I’m a 22 year old female and I was diagnosed with ulcerative colitis a few weeks before finals in the Spring of 2009. I’m a recent graduate from the University of Montana and I’m currently working as a freelance graphic and web designer.
One thing you should know about me is that I absolutely LOVE to travel. I studied abroad in Mexico the summer before I was diagnosed in 2008. At the very end of my travels, I had a severe case of Montezuma’s revenge for an entire week. I thought I was going to die, I had never been so miserable. That was the first time I became well acquainted with the porcelain throne. Little did I know we’d get to know each other even better less than a year later. The reason I’m telling you this little story is because my mother’s convinced this is where it all started. I think it was the water. She thinks that maybe some parasite started this whole thing.
Currently, I take lialda twice daily and 6MP.
Lialda once daily – relapsed a week later
Prednisone – worked well after I was released from the hospital the, but my face swelled up, I couldn’t sleep for more than 4 hours every night, and I was hungry all the time.
Lialda twice daily + 6MP + probiotics – has been working for me the last year, but I don’t want to be on anything anymore. HELP!
Here’s My Problem:
I don’t want to be on any medications. I’ve heard of people controlling UC through probiotics and diet. The thing is, I’ve also heard that if you go off of 6MP you’re likely to relapse. I don’t know what to do! Has anyone gone off of this drug before successfully?
My thing is, I want to be able to travel without worrying about having a flare up in a non-English speaking country. I want to be able to drink alcohol and not have to prepare myself for diarrhea the next day even though I know I shouldn’t drink on 6MP. I want to not worry about being hospitalized and having to pay hospital bills for the rest of my life. I want to have a child within the next 5 years and not worry that it will have a birth defect because of my medication. There’s so many things that I want without worry, if only I didn’t have UC, or if I could at least control it in a way that wouldn’t do more harm to my body than it does good.
I was diagnosed in the Spring of 2009, right before finals (that I missed) during my Junior year in college at the University of Montana. After three ER visits, a one-week hospitalization, Lialda, Mesalamine rectal suppositories, Entocort, (and some Hyoscyamine, Loperamide, and Loratab to ease the pain), a relapse a week later (2 weeks in the hospital this time), Prednisone, Lialda and 6MP, I am now (pretty much) symptom free. I graduated from the University of Montana in May of 2010, and I’m currently working as a graphic and web designer. I want to go OFF of Lialda and 6MP and live my life as a normal person.
I find it interesting that you had been to Mexico prior to being diagnosed. The year I started having trouble I’d been to the UK and Guatemala. I drank the water in both places. A lot of people have had success with SCD diet. I think your Dr. will tell you that if you go off 6-MP then you will need steroids or remicade if you relapse. I could not take 6-MP – made me very sick.
Paul, That is interesting you were also diagnosed after traveling and using the water. I really do wonder if there’s a connection. Thanks for your thoughts and advice! Much appreciated :)
Hi Sarah, I love how you have goals and don’t want to stop traveling! Doctors are a cautious bunch, understandably! I have Crohn’s but started having probe after getting giardia from water! I went on Cipro even (which helped for a time of three weeks). Eventually, I had surgery for Crohn’s. I would talk to your doctor to see if you can gradually wean off 6mp. There might be other posts about this on Ada
‘s site…I weaned off Prednisone over the course of three weeks so I was cutting the tabs in teeny pieces(!), then my doc said I cd stay off 6mp IF I stayed in remission…fours years have passed! I did the SCD at the beginning, too. Naturopath, acupuncture…all that holistic aryvedic stuff is awesome, being super disciplined & keep a food journal. You look super fit, so exercise, sleep, etc… Practice all this in preparation and maybe the GI will let you try! Good luck&you are on a good site.
That’s really interesting, Dede. I also went on cipro while I was in Mexico because I was NOT getting better. And then about 7 months later I was diagnosed with UC. Surgery sounds scary to me but I’m glad it worked for you!! :) I’ll just have to see what I can do about 6MP.
I love to travel too! Don’t give up one of your passions.
Try the SCD out, I have had great results and am currently in my 4th month! I am travelling to South Africa for 2 weeks and dont really have to worry bout my UC, which is such a relief!
Good luck :)
I as on 6MP for 5 years and was fine, but then I got a basil cell skin cancer that had to be removed and they said it was because of my lowered immune system because of the 6MP. So since I was doing fine as far as my GI symptoms at the time, I decided to go off of the 6MP. I did not want more side effects, and like you, I want to have children with no birth defects.
I’m not sure if it was just because of going off meds or the combination of stress and taking antibiotics for the surgery to remove the skin cancer, but I went into a flare soon after and am still in one (have been since February). I am on prednisone right now and still have bleeding. I am hoping I will get better with the SCD, but it doesn’t look like it is helping to put me into remission fully. I’m about ready to just say F-it and go back on 6MP. I’m tired of this crap! literally!
I am so glad you have found websites/support. These people are so nice who replied. I am sure it helps to hear similar stories…
I am so proud you,
Not saying much here…nothing to prove it…but I too began having symptoms a very short time after returning home from Cancun, Mexico! Bowel issues/diseases don’t even run in my family…mom nor dad’s side. Like I said, I’m not concluding anything here, just the facts. Makes one wonder though….hmmmm….
That makes me wonder too!! Did you take anything for it while you were there? I took cipro because I wasn’t getting better and didn’t know where to start as far as seeing a doctor. Then about 7 months later I was diagnosed with UC!
My 20 year old has uc since she was 13. She is currently on lialda and 6mp and a 3rd year undergrad. She is losing hair and weight but her uc has been in control for 2 years now. Previously on asacol and prednisone. LDN therapy seems to work great for some. You should talk to dr. Jill Smith at Hershey medical center to wean you off 6mp. That is our next plan after my daughter finishes her undergrad.Good luck to you and stay in touch.
I was wondering if hair thinning and weight loss is a symptom of 6-MP or lialda. My hair used to be so thick and over the last few years I’ve noticed it’s just not anymore. And none of my jeans seem to fit me anymore either and a lot of people comment on how thin I look.
I goggled 6mp in regards to a face rash my 6 year old daughter got after going off 6mp, and for some reason I got this website at the top. Anyways, she was on 6mp for almost 2.7 years due to cancer and yes 6mp does cause hair loss or thinning. You will especially notice it if your dose is increased or if you have been off it for awhile and then go back on it. hope your doing well
Hi Ive had UC since I was 12 and I flared up yearly until I started 6mp at 19 and for the last 2 years I havent flared up but for the last year I have noticed my hair thinning and falling out and I noticed that other people have been having the same problem and I completly understand where your coming from when you want to drink and you know your not supposed to. I just turned 21 so its hard to moniter everything and now im starting to loose my hair as well even though its great not flaring up the side effects from this drug are killing me so i decided to take it only 3 to 4 times a week and I havent had any problems but I am also trying to find another med that is just as effective with less side effects.
I’ve had UC since I was 13 (just turned 24) know exactly what you’re talking about. I started with 6mp but ended up having a toxic reaction to it, then switched to methotrexate and honestly its just as bad (and it didn’t work either). So I’m on remicade now. I’ve been on it for 9 years with no side effects and have had very little problems with my UC. A lot of people think remicade is really dangerous (which it is a serious drug) but honestly I’d rather be on it than any drug that’s used for Chemo.
I have also been diagnosed with UC. I am tapering off Prednisone and my doctor has recogmended Entocart EC and 6MP. I am wondering what kind of success you guys have had with this drugs?
Sorry I’m so late to your response. I didn’t have any success with Entocort (I was diagnosed with severe UC) but have had success with 6MP and Lialda. I take both of these every day and have been in remission for almost 3 years now.
My 13 years old son has UC also and he is taking 6MP ( 50MG )and Lialda ( 2 pills a day ) everyday.
I want him to go off 6MP but his Dr. told us NO….According to Dr., Remicade is worse than 6MP and more dangerous.
After the second flare up, steroid did not work for him at all last year. So he did not have any choice but to take 6MP.
I refused first but no choice.Did you go off 6MP ? How you are doing lately ? I really want to hear from somebody who stopped 6MP and successfully under control without this chemotherapy medicine-6MP.
I went to Cancun in May and was diagnosed with UC in October of the same year. Could it be the water or food in Mexico?
I am on 6MP (100mg) and it works fine but I want to stop taking them before I have kids. Doctor doesn’t want me to stop it. Not sure what to do.
I was diagnosed with UC ealier this year & am also struggling to come to terms with the thought of being on drugs for the rest of my life & the side effects.
My symptoms also appeared after getting ill whilst travelling in Russia about 6 years ago. I was told I might be a ceoliac but couldn’t handle the high gluten diet required to be diagnosed. After 4 years on a completely gluten free diet I only had symptoms when I ate something with gluten accidentally. Then after quitting smoking and having some quite stressful events in my life the bleeding started and I was diagnosed with UC.
I think getting sick in Russia was definitely the trigger as I out of habit ran my tooth brush under the tap in St Petersburg where they say the sewage system leaks in to the water supply. When I had my scopes done I also had erosion of my stomach caused by bacteria which was treated with antibiotics. Let’s hope they find a cure for this too soon because I really don’t want to be on drugs for the rest of my life either.
UC came into my life about around the same time and its been rough, I understand exactly what your going through, the painful cramps, painful bowel movements, the urgency to go as soon as you wake up, not being able to eat and drink what you want, not to mention the bloody mucusy %@&*….. its all hell. The diet is key! If you want to get off those drugs! Now, Ive tried the pro biotics and frankly I didnt get any results(VSL3, various yogurts). I only eat oatmeal,chicken, beef, pasta, rice, diced fruit, potatoes, bread and drink water(everything plain!) not to mention all the vitamins. After suffering with flareups from eating pizza, chinese food, fast food, alcohol, soup, doughnuts, chocolate, candy, chips and dairy I finally figured out that if i veer away from my diet,.. I suffer. Its hard, it takes discipline, and you really have to question what you want, out of life. I wake up every morning and the first thing i do is exercise(usually cardio), I find this helps for some reason. I also try to exercise again in the afternoon(usually weights), exercise and diet help control the symptoms for me. Now I understand that every individual is different but once you figure out what works for you do not veer away from it because as soon as you cheat… you will suffer, and be back on prednisone again.
I wonder how you are doing, Sarah? (and everyone else!)…I just got back from Honduras, and I did not drink ANY water at all, only from the huge plastic jugs that we had at the house we rented… so far not sick! I wrote a long blog post about traveling–but suffice it to say: be careful of water. I am so saddened by what has now happened in Haiti–just over a year ago from when the quake hit, and now cholera. So sad for the people there. And they say the infection began in the water where the UN peacekeepers were stationed.
I forgot the rule for travel and what to eat: something like, “boil it, peel it, or forget it!”
Hi Dede, I’ve been in remission for almost 2 years now (so I’d say I’m doing great :) knock on wood. But I haven’t traveled south of the border since! Which is both good and bad in my book. I definitely didn’t follow the rules as I should have (I liked those street tacos! And may have brushed my teeth with the water – I can’t even remember…). I talked to a new doctor recently, about whether or not he thought my illness in Mexico could have brought on my UC, and he said something really interesting. He said that it IS common that a previous infection (such as what I had in Mexico) can cause or bring on UC because (something along the lines of) your immune system is still working to get rid of the infection that isn’t even there anymore, therefore starting UC. He also said that antibiotics (like cipro) can bring on UC. (I took this drug without being prescribed it – big no, no) Ugh it’s so crazy. To think that one illness or decision can bring on such a disease. I’m glad you were able to travel to Honduras and stay healthy!! It gives me hope for my next trip :) Too bad I didn’t even know this disease existed before my trip to Mexico.
Hi Sarah and everyone!
This conversation is so interesting to me! I was diagnosed with UC in 2000 (at 20 years old) after getting Giardia and being treated with Cipro. I have always wondered what the connection was between the parasite, antibiotics, and the UC. The theory that the immune system never “turned-off” is very reasonable and I have had doctors mention that to me. Though, I cannot find any studies on it. If anyone knows of any, please let me know.
It has been a long 10 years for me, to say the least! I have never really figured out the right treatment to stay in remission because I am constantly going off my medications or am finding that they do not work for me. I believe strongly that my body can heal itself but I have not figured out the right plan of action yet. At this point my doctor wants me on Remicade but I am still resistant. Even after 10 years with this disease I think it is hard to admit that this is something I will have to live with. I am getting to the point where I have to figure something out because my body keeps flaring and I am getting prednisone dependent (Lialda and 6mp have not worked for me).
I am gluten and dairy free, take VSL #3 and do yoga/excersize regularly. This helps reduce the symptoms of my flares but does not eliminate them. I think diet is essential, as it is what your colon will have to deal with. There are many foods that act to help to reduce inflammation and others that increase it.
It is best to meet with a Naturopathic doctor who specializes in this type of disease before you go off meds. They can guide you through the process. I personally had to give that a try because I needed to know if I could do it on my own or if I really needed the meds. But it is so risky. You have to accept that you might flare and have to go through that again. Come up with a game plan in case that happens. Talk to your doctor and get a regiment ready for you if you have any symptoms. The earlier you catch them the easier it is to kick into remission. Unfortunatly for me, I will need meds with a combination of alternative therapies.
I wish you all the best!
I know your post was made over a year ago but I wanted to respond to a lot of things that you had said. Like you, I wish that I could not have to rely on medications to function normally as everyone else takes for granted, I have been in denial a long time about needing meds, I was on so many pills everyday the minute I felt better I would stop taking meds. Now I get Remicade infusions every 6 weeks and it works very well for me. I was first diagnosed with UC when I was 18 and I am now 25 and I am thinking about having kids in the next Few years but I cannot receive infusions while pregnant which is a scary thought because when I relapse it gets very bad very quickly. I hope that you continue to remain in remission and are able to travel and have children safely. Also,to this day I try to find a reason or a trigger for why this happened to me and you can try to blame this or that but it is what it is, when I got sick I was so healthy, I went to the gym everyday, I was in the best shape Of my life – didn’t drink didn’t smoke and I got sick. I’ve given up asking why and I embrace how this illness has shaped me as a person,if I never was sick I wouldn’t be compassionate or understand chronic illness ,two things that have influenced me to become a nurse. I hope also that you can move back your getting sick in mexico and go there again because it may not have caused it and what’s done is done you shouldn’t not enjoy going there because of that. All I know is I am a type A personality and I stress way too much about things and I think UC was in my genes and bound to happen one way or another.UC is a terrible disease that other have trouble really understanding but hopefully you can extend that understanding to others and I think that’s the best thing you can make out of this situation.
Thank you for your post! I’m still on the same meds and thankfully also still in remission.
I’m so happy you reached a point where you stopped trying to blame the disease on something in your life and that it you can find the good in it, like bringing you to become a nurse. I think I am also coming to terms with the disease. I know that I will still travel to Mexico and other third world countries, but I think in the back of my mind there will always be that thought, “what if I get sick!?”
It seems we’re about the same age (I’m 24), and I’m also already worrying about pregnancy in the future. I recently got engaged and having children is really important to us. Although we won’t be trying for another 3 years or more, it’s a huge concern for me. I’m one of those people who wants to not be on any meds during my pregnancy, have a natural birth and breast feed and already I’m worried none of those things will be options. What do you think you will do since you can’t have Remicade infusions while pregnant?
I know these posts are more than a year old, but I had to share something with you. I was diagnosed with uc 11 years ago…in what I consider the “prime” of my life. I had finished college, had a good job, was very fit and full of life. In the early part of my diagnosis I took prednisone, entocort, and lialda. They worked for the most part at getting the disease under control for me, but true remission came when I became pregnant. It sent me into a state of complete wellness while taking no medication!!! It was amazing..my doctor told me that that is not uncommon, and if it occurs, remission will continue through the term of your pregnancy and even for as long as you are breast feeding. I thought I was cured! I nursed my son for a full 13 months, and was symptom free the whole time, 22 months. When he was about 2 symptoms recurred. Meds weren’t helping. I suddenly started feeling better, and SURPRISE I learned it was because I was pregnant! Again, complete remission, with NO MEDS, for the whole time I was pregnant and nursing! 25 months this time.
My youngest is now 6, and I am in the middle of a 10 month flare. I have never been so unhealthy!! I was on prednisone for 8 months, big weight gain, loss of energy, and still no remission. I had used this off and on for flares in the past for short amounts of time, but had never continued that long. I am on remicade and lialda. They are trying to keep me off of 6mp, and started me on uceris. It is a brand new drug, approved for uc in feb 2013. I’m praying that it will start helping.
I have read about success with the SCD diet, and would love to hear from anyone that has strictly followed it. It would be difficult with my family, but I have to save my colon,,not to mention my sanity!! I want to be healthy again. Wish they could bottle whatever hormones you produce during pregnancy.
I hope you are doing well:)
The hormones you produce during pregnancy is progesterone. It seems to have a good effect on us maybe lowering the immune system (so the baby will stay in the womb). For women in relapse, we often fall in progesterone and DHEA and high levels of estrogene receptors. In one study the gave 7 Crohn’s disease persons who did not respond to any treatment 200 mg DHEA for 59 days and five went into remission, one dropped out first week and one got a relapse on day 59.
Have you looked into Fecal Microbial Transplant (FMT)? My daughter was diagnosed 2 years ago with UC and we were treating it with a raw vegan diet (which will work), but she is a teenager and gave in to temptation. Anyway, I’d read about FMT years ago, but it fell under the “Alternative Therapy” and sounded risky to me. Now, however, the medical community has embraced it as a 90%+ cure for c.diff and are currently running studies for Crohn’s and UC. There is really no risk in trying it as long as you know your donor and have the required tests. I have found a pediatric GI who has agreed to oversee the process for my daughter. I hope it works!
Hi Elizabeth! The more I hear about others treating an infection with Cipro that ultimately leads to UC, the more curious I become! I even took Cipro without being diagnosed with anything!! I just knew SOMETHING was wrong and cipro eventually worked. Now I sure wish they required a prescription in Mexico and didn’t just let anyone get whatever they wanted. I just listened to a fellow traveler who suggestion the medication. Ugh. This is so interesting though!
I haven’t yet met with a naturopathic doctor, but would like to look into it. Does insurance cover those doctors? My own doctor recommends that I just stay on the 6MP and lialda since I’ve been in remission for almost two years now. He doesn’t think the SCD diet is for me. (but what doctor does?) I try to eat gluten free when I can, but I still eat bread. It’s so hard to avoid! I have heard though that some people who completely rid gluten of their diet who haven’t been diagnosed with celiac can have some problems. That’s something you may want to look into. I also don’t drink milk, which is a product that’s ALWAYS affected me, even before I was diagnosed with UC. But I still eat cheese… And I also exercise several times a week.
Thanks for the comment! Let me know if you find something to help you! I’m surprised 6MP and lialda didn’t work for you, they’re practically miracle drugs for me (aside from prednisone to get me out of a flare). I was even diagnosed with severe UC.
I hope you’re soon in remission!
I was just hospitalized for a week after having a flare up that was really bad. It went on for two weeks and the doctor put me on lialda, predisone, cipro, 6mp and another med i think for antibiotics. None of them really helped and over the course of 2 months it got so bad i was in the emergency room 4 times and they finally admitted me to the hospital. No one knows the cause of UC just how to control it. There is no cure for it. When i was in the hospital they gave me a new medication the last step before removing my cologn. It is called remicade. It did wonders for me and by the next day i was going number 2 half as many times as before, had very little blood in my stool. By day 2 it was almost all cleared up. I would talk to your doctor about remicade if you still have problems. Downside is you have to go in every 8 weeks for an infusion of it which is just like getting an IV but also talk to your insurance company first and make sure they cover it cause i heard that some dont. This medications saved my life. I had to have 2 blood transfusions while in the hospital of 3 units of blood total. Good luck and make sure you stay on a good low fiber bland diet. Talk to your doctor about remicade!!
Hey I am in a flare and I am taking pred, which works, but also sucks. I am having another colonoscopy in 2 weeks and my doctor mentioned putting me on 6mp? what are some side effects of 6mp. I can’t really go on as my wife and I are trying to have another baby, so I want to get off this pred and try to stick to the SCD diet so I don’t have to b on these horrible drugs that doctors love to prescribe. Also cheese and bread are the hardest things to kick. Sarah any luck with a naturopathic doctor or anyone else out there, I am sick of colonoscopys and doctors.
Hi Zark, I haven’t had any side effects with the 6MP. One thing I can tell you is that it works! But they’ll have to test your blood levels frequently to make sure it’s not causing any toxicity. I still haven’t seen a naturopathic doctor. I currently don’t have health insurance and I’m living on a tight budget. But I hope to see one at some point! I’ll let everyone know when I do.
I was diagnosed with Crohn’s Disease in 1990. I have always had flare ups but not so bad that I had to be admitted to the hospital. I was recently admitted to hospital for three weeks in February with a severe flare up. While I was there, I had a colonoscopy and and endoscopy. They found a large bleeding ulcer and ulcerative colitis. I was on 6pm, prednisone, asacol, sucralfate,pantoprazole.
I was introduced to the 6 mp in the hospital and as time went on I started to develop problems with my legs. We first thought it was from all of the fluids that were being pumped into my veins. When I went home the leg problems only got worse. The pain from the bleeding ulcer and Crohn’s was gone but I could not walk. That is when I started researching each medicine and what side effects each one had. After days and nights of severe pain in my knees and ankles and a trip to the E.R., the docs decided to take me off of the 6 mp. I still have joint pain and the docs said that it should go away but it has been a month and a half since they took me off of the 6mp so I don’t know when or if my knees will go back to normal.
hey, you should never take Cipro without Flagyl. I did not know this either until recently, but Cipro without Flagyl can sometimes cause the overgrowth of C diff !!! Also, my Chron’s was after a one week bout of food poisoning also. Take probiotics: acidophlous, lactobacilus, and Bifidum !!! You need all of those. Eat a simpler diet temporarily to give your guts a break while you rebuild. Research Glutamine, eat fatty fish a few times a week, MOST IMPORTANT: drink half your weight in water a day. 100lbs you drink 50ounces of water. You cannot heal if you are in a constant state of dehydration. Slowly wean yourself off the 6mp but tell your doctor. they weill get pissed and say you are going to relapse. Take psyillium supplement with slippery elm and marshmallow root that you can find at whole foods. Exercise and sleep well and you may have a chance at getting off the meds.
check out braggs apple cider vinegar diet. sounds crazy? as crazy as taking leukemia meds for diarhea? what about Rat DNA transfusions aka Remicade? How about the other favorite biological Humira which is made from human DNA? Try the natural stuff too and do it gradually. Drink lots of water and get sleep and exercise. Your body can heal itself with some help. Make sure everything you eat is nutrient dense. Don’t eat dinner late. Try not to eat after 7pm.
I was diagnosed with UC after cipro use and a long battle with C-diff bacterial infection. My doctor said they had nothing to do with each other but I say they are wrong. I have since learned that once the immune system is turned on (to rid the bacteria), it can not shut itself off and that’s why the colon is also purging itself. My story is a nightmare so I won’t bore you but remicade is out due to side affects and mp6 is now being used. We’ll see what happens. It’s all a crap shoot..sorry..but that’s what it is. One thing I can say is that we are not alone. I understand what you are going through. Thank God for web sites like this…I would think i was the only one! It’s impossible for anyone who is not suffering from this illness to understand. Good luck, everyone, let’s push for a cure!!! In the meantime..whatever works..stick with it.
hi sarah, did you ever get off the 6mp??
i am currently on 6mp and remicade but my digestion is fine. i have other side effects like feet numbness, chest cramps, rashes, and acne. i hate being on the meds and want to get off them, but my doctor says i’ll be on them forever. this makes me so upset because he doesn’t believe in natural ANYTHING. he says my probiotics won’t do anything even though they’ve helped me with my bloating.
just curious if you weaned off your 6mp or stopped cold turkey?? i just stopped prednisone last week and am already feeling 1000x better. it really messed up my body and mind.
Unfortunately I am still on both 6MP and Lialda, my doctor doesn’t advise going off the meds, and since I’ve been in remission for almost 3 years with them and currently don’t have insurance, it’s really not a good idea for me to stop using them :(
Maybe the side effects your experiencing are from the Remicade? The only thing I’ve experienced is weight loss and my hair is also a lot thinner than it used to be. Not sure which med is to blame for that though.
My daughter, who is 23, was diagnosed just before her senior year in college. After a year of trying to only use Apriso with limited success, her doctor put her on Imuran. Unfortunately, she immediately got sick from the Imuran, so they took her off. After her last bad flare-up this fall, he put her on 6MP. So far, she has tolerated it (so far, she’s on 75 mg with the hope of getting her to 100 mg). Since going up the 75mg, her hair has been falling out. Seems to be a side effect that the doctors don’t think is very important (unless you are a young woman with previously beautiful hair). Here’s my question–does the hair loss slow down as the body “adjusts” to the 6MP, or does it just get worse? Is there anything that will help with the hair loss? It’s just another crummy side effect of this disease. I, too, am concerned about being on this drug for many, many years and what happens when she is ready to have children. It’s a crummy disease, and I’m sorry that all of you are having to deal with it.
Since it has been a few years later, how did this work out for your daughter and her hair loss?
I am experiencing the same right now and I am wondering is this will reduce as your body adjusts or will it stay this way?
Since it has been a few years later, how did this work out for your daughter and her hair loss?
I am experiencing the same right now and I am wondering is this will reduce as your body adjusts or will it stay this way?
Sarah – My 11 year old son w/Crohn’s did many drug trials, 4 rounds steroids and Remicade infusions only to go from mild to severe diagnosis. Started SCD 100% and deleted all meds over 3 years ago and he’s been healthy. I was diagnosed w/UC and hospitalized 1month until starting SCD – after IVsteroids and Remicade infusions were weaned, SCD has kept me 100% healthy too. SCD ROCKS but you must do 100%. Looking into LDN for my son as he’s headed to college and looking forward to traveling.
I took CIPRO and was diagnosed for UC after 5 months !!! there is certainly connection between CIPRO and UC. they must do more research on this and find out how CIPRO is causing UC. If they can find that, probably they can find how to reverse the effect and cure UC permanently.
I was on asacol for long time, than predisone for short time and then again on asacol only. In next flare prednisone did not worked so they tried MP-6. It worked. I am using it for last 4 years and have no problems yet.
Hi Sarah and everyone else – I was diagnosed with UC a year ago…only trip south of the border i had prior to was a trip to Cancun but that was about 10 months prior to problems. Since diagnosis I have been hospitalized twice because the first two drugs my GI put me on gave me pancreatitis with my flare ups. I was on apriso first (aka lialda, asacol) then they put me on sulfasalzine (def spelled that wrong). Both drugs gave me pancreatitis so my new GI put me on imuran (azothiaprine) which I have been on for 5 months and am having side effects of losing my hair and severe joint/muscle pain. I am so frustrated because as far as my UC symptoms go, I have been in remission for 5 months. My doc is now going to put me on a lower dose of 6MP…I am afraid I will continue to have the same side effects? Like a lot of people on this blog I am very active, run and do yoga frequently. I am very curious about the SCD diet but I know my doctor will not support that decision. Thanks everyone.
I have had UC since I was 17 and I am now 32. I had a period of remission for 5 years in my early 20’s I have tried to come off of meds but I always relapse. I think from experience a diet can not quiet the immune system. I currently take, cultuerelle (probiotic) and ASACOL HD and Rowasa. Just recently my body has not been cooperating with these meds and I can’t achieve remission. The Dr wants to use 6MP after he gets BT results. I know it is frustrating living with this disease but if you have achieved remission I don’t understand why you would want to come off the med if it works. I would not suggest traveling anywhere without being on meds with this disease. Whenever I travel my UC flares and I always have Rowasa on hand to quiet things down. We may be different but I have had this disease for 15 years and tried to come off meds and it never works. My sister suffers from this as well, she doesn’t like to take meds and just recently she developed blood clots in her legs that almost killed her. Needless to say she has been diligent about taking her meds ever since. UC is autoimmune and unpredictable. I wish you luck but caution you about coming off of this drug or any drug. Ask your dr about Asacol HD I was on Lialda years ago and once that stopped working the Asacol worked for a few years.
Thank you Jessi,
It’s nice to hear your perspective. You’re right in a lot of ways, why would I want to go off of meds if they work?? And that’s the #1 reason I’m not going to stop taking them any time soon – both my doctor and I fear I will relapse without them.
However, my biggest concern is in the next few years when I am ready to have a child, that the meds or UC will affect my pregnancy. That’s one of the main reasons for wanting to discontinue the meds, plus I just hate thinking about the toxic drugs I’m feeding into my body every single day.
I just found your posts as I am considering 6-mps. I have had UC for 20 years, since I was 10 years old. For most of my teenage years, I was in remission on dipentum. Later, I used pentasa, colazal and lialda. I can no longer tolerate any of the mesalamine drugs. It’s very frustrating!
I wanted to respond to your worries about pregnancy. I have two beautiful boys. My UC never really caused any major problems for me until my first pregnancy. I ended up hospitalised with a flare at 20 weeks pregnant. This was turned around quickly with IV steroids. It scared me a lot, but my OB was fine with the steroids. My first son was born 5 weeks premature. I think if I had a better plan to manage my illness before the pregnancy, he would have made it full term.
I had a miscarriage a few years later, which was followed a few weeks later by my worst flare ever. My hormones seem to really drive my flares. That time, the IV steroids had no affect, and I eventually need Remicade to get me home. I hated the idea of being on Remicade. I hate the idea of medication in general. But it really worked. After the miscarriage, I was determined to quickly and my doctor believed that with my history of flares during pregnancy, I was going to need the Remicade to get there. I had a full term, healthy baby boy a year later.
You can have children on medications. I was constantly worried about it, but I do think the risk of flaring during pregnancy was worse than the risk from the Remicade. For all my complaints and misgivings about Remicade, I got my healthy baby and I have no legitimate complaints about it.
So, then I made the decision to quit Remicade so I could nurse. It seemed like a great decision at the time. Now, I can’t go back on it. And a year later I had another flare. The only option left seems to be 6-mps. I’m terrified of them. I’m wondering if I am being irrational, as I was terrified of Remicade also. I’m scared to lose my hair too. I lost a lot of hair on Remicade, and it is just now coming back. Do you feel okay on 6-mps?
And to make matters worse, my 4-year-old has recently been diagnosed with UC. He is far sicker than I have ever been. He was diagnosed after having Giardia. There is debate about whether the infection triggered the colitis or he was susceptible to the infection because of the colitis. He was treated with flagyl. Now, he is on Remicade. I have serious misgivings about a 4-year-old on Remicade, but there was no way to get him out of the condition he was in.
I’m seriously debating starting the 6-mps or giving it one more go on my own. I’m on a lot of prednisone right now and I think that is clouding my judgement.
I sure wish this site would notify me when people comment on my posts, sorry it took me so long. It’s really good to hear your story! But also scary! I’m so concerned about pregnancy in the next few years. It scares me to death. And I’m one of those “all natural” kind of girls and really hate the idea of being on a drug of any kind while pregnant or breastfeeding.
But in answer to your question, I would MUCH prefer to be on 6MP than prednisone, or remicade for that matter. Prednisone works wonders to get you out of a flare but it seriously is the devil. I had much worse side effects on prednisone and it is very dangerous to stay on for an extended period of time. The hair loss on 6MP isn’t THAT bad. I just used to have a lot thicker hair, so I noticed it’s thinner. I don’t look like a cancer patient or anything of that sort, so don’t let that scare you. Most people I know can’t even tell. Let me know what you decide to do and how it goes!
I am a 43 yr old male with UC diagnosis for 20 years, with long term remissions but increasing bouts in conjunction with this wonderful stressful recession. However, I am convinced UC is a medical, not food, water, or environmental, based disease.
The last episode was long and very difficult. 6MP stopped working and I could not ween off the steroids. 12 months ago my doc recommended Remicade, but my wife and I resisted. However, I had no other choice 6 months later. (Long episode and very draining.) Fortunately for me I have had no adverse reactions. Fortunately also the Remicade worked quickly and wonderfully. I get my “juice” every eight weeks. The remistart assistance program paid my insurance deductibles. Make sure you register immediately after your first infusion and have your doctor help. I am also on a reduced 6MP dose. Its great now, so long as it keeps working. I eat anything I want, do all my swimming and biking and surfing that I want and can. While the siliac test was negative, I avoid bread/gluten products. I have my life back. I have my energy back. Remicade is much safer that the steroids. Oh yeah, I have my sleep back. For a while, I couldn’t remember the last time I slept through the night. Now, I am good with 7 hours and ready for the day, after a nice cup of strong coffee, which I can now drink again as well. Good luck. the remicade, so far, has been great.
Sarah, I’d fly out to San Francisco… or write to Dr. Uma Mahadaven at UCSF. She specializes in UC and pregnancy. At this time, I don’t think there is enough evidence to say that it is safe to be pregnant while on Remicade. The drug is too new to produce a a few good 10yr or one 20-year study. I don’t know about 6MP. As for prednisone, it is so horrible as you know. I had to go on it while pregnant…I went into early labor at 7 months and had to get some kind of drug to stop the contractions. Dr. Mahadaven will have all of the updated research (she is a research and clinical Dr.).
Are you tired on 6MP?
Hi, I was diagnosed 11 years ago with UC. I live in Kansas and had gone to Florida for a week. I drank the water there and when I came home it was less than a month that I got Ill. I have no idea if the two are related or not. I was under a lot of stress at this time in my life. I had a nine month old son, so had recently gone through labor. I got married just a year and a half earlier. As well as many other very big life changing events that caused lots of stress for a long period of time. My life was just starting to d-stress when I got sick. It took almost three months for them to diagnose me and I got very thin and anemic. I was not able to start seeing a specialist till just 4 months ago. I had always been on Sulfasalazine and Prednisone off and on for all those years. When I finally got to go to the specialist he told me that I had been in a continued flair up for the last 11 years and so then he put me on a long, high dose of prednisone taper to try and get me in remission. I am always fine while on Prednisone but as soon as I get down to the really low doses I start flaring up again. So Now he has just changed my meds to Prednisone and 6 MP. I have not even been on it a week and already feel so much better. I will be off the prednisone in 5 more weeks hopefully. I hate the stuff. I feel it has caused me to get cushings but my doctor does not think that is the case. I have a round face now when I have always had a heart shaped face, I have facial hair that I have to use cream to get rid of. I have a buffalo hump in between my shoulder blades from it. Plus so many other symptoms, But for what ever reason he does not believe that I have it. I have also worried about having Gluten intolerance but eat lots of it. I have a very swollen abdomen. Not sure if this is due to the intestines being swollen all the time or what. I have gained 30 lbs over the last 5 years and can not stand that.
I hear ya sister, that Prednisone is bittersweet! It works to stop a flare but has the worst side effects. I too had a very round face and ate all the time. Fortunately, at that time I needed to gain weight after losing so much from a flare. I can’t believe you’ve been on Prednisone on-and-off for 11 years though, I think that’s pretty dangerous to be on for long amounts of time. Let me know if I’m wrong, but that’s just what I’ve heard.
Both 6MP and Lialda taken daily really did the trick for me after I was tapered of the Prednisone way back when. I’ve been in remission for almost 3 years. Have you asked your doctor about taking Lialda too? It’s expensive but there are websites where you can qualify to get it for free.
could you list the sites that offer free lialda if qualified?
I get Lialda for free through Shire Cares Assistance program, just download the PDF form on this web page: http://www.shire.com/shireplc/en/contactus/patientassistance
You will need your doctor to fill it out, proof of income (copy of most recent tax return), and a copy of your insurance card if you have it.
DeeDee, I agree with Sarah and hope that you get off prednisone asap. Ask your Dr. about Remicade to get the flare down to zero then treat without prednisone. It has long-term dangerous effects and you are already experiencing some bone issues. It robs the bones of calcium among other side effects. Use weights and work out to put the calcium back in. Your doctors sounds like he/she is not up on the latest treatments/findings about prednisone. As for your initial flare, most likely you had it lingering around and the pregnancy and multiple stress issues put you into a full-blown UC.
The guy below says that we are robbed of vitamin D but I live in sunny CA and I have UC and my CBC test have never shown vitamin deficiency. Hopefully you are getting CBC tests done and other tests while taking prednisone.
I know this post is pretty old and you may have already resolved this, but I just wanted to put my two cents in. I was diagnosed with UC as well, but not after going to some foreign country, in fact I’ve never been out of the US, but my doctor perscribed me 6mp and Colazal, I am only 15, I was diagnosed on my 14th birthday actually. and being a kid I didn’t want to have to take pills 3x daily while my friends did whatever, I wanted to sleep in and not worry about morning pills and not have to go to the nurse in the middle of a school day, so I took myself off 6mp, gradually I would reduce my dosage and it has been about 3 months and I haven’t had any negative side effects, it’s weird how fine I feel actually, my doctor does know and he said if I was gunna do this, there was no stopping me, that “teenagers will be teenagers.” Just my experience, I hope you work something out keep going for your goals :D
I should say that I’m currently on those two medications, I did take prednisone for about 4 months with 2 pills 3x daily and some other pills that I can’t remember..
Hi all. I am a 49 year old woman who just started 6MP about 6 weeks ago. I was diagnosed with UC 8 years ago. I know it sounds crazy, but I think I felt better before all of these drugs. I have noticed strange aches and pains, bumps on my face and exhaustion. I am supposed to be on prednisone, but I just refuse. Not that I will tell my doctor. When I went to the doctor yesterday, he said I needed to go to a dermatologist because the bumps couldn’t be from the 6MP. Since I started this drug, my earlobe and a cut on my hand have become infected. I am currently on Cipro to heal those. My gastro doesn’t want to deal with anything but my UC so I’m worried that there are too many doctors in on my case.
I guess I’m writing because I am scared I will never be well. My bowel is somewhat better. But am I just trading that off for other problems? No hair loss yet, just hate feeling ancient. Maybe it is my age? Has anyone been able to go off 6MP and remain in remission with Lialda?
Your doctor may be right. I’ve never experience any skin issues with 6MP. Unfortunately, I too have yet to go off 6MP, and I haven’t heard anyone successfully go off of it yet! Fingers crossed.
hey, I know it’s pretty late but I’m just looking at this now, I am 18 and have crohns for about 4 years, last January my doctor told me that I no longer had crohns but he wasn’t sure what I, I went through the next 4 months in and out of the hospital no meds seemed to be working the only meds my doctor new that worked for me are steroids and 6mp, when I was first diagnosed I was put on 6mp and steroids after 8 months or trying to get off of steroids my mother heard about a diet she want me to try it. just after 1 month I was off the steroids and slowly getting off the 6mp I got off the 6mp and I complete fine for about 3 years until I stopped the diet. if I hasn’t of gone off the diet I would have been in remission on no meds and only a simple diet. I am currently on 6mp and I have tried new steroids and remicade which both didn’t work. my doctor still downt know what’s wrong with me but I just wanted you to know that you can get off 6mp and be totaly fine. I would just go on I diet it might be hard but I’m sure it’s better then being on 6mp and I have travel the world after that being on the diet and being on meds and ts not a problem you just have to listen to your body and take care of your self!
Tracie, I just started 6MP 2+ weeks ago and I am tired all of the time on 50mg. I lowered it to 25 without getting permission and I feel better but still tired. I think all of these drugs will eventually kill me before UC. I’d like to wean off all (or just LIalda or Sulphasalazine), go as natural as possible, and search for a surgeon that will hack off my left sided UC and leave the right side in place.
The best response I’ve read in this thread was the first one, from Paul Willoughby. He recommended the Specific Carbohydrate Diet (SCD). I’ve been on it for a year, I can tell you that it’s the only thing in 30+ years that has relieved my colitis. Lialda, Asacol, Asulfidine never worked for me, and I am scared to death of 6mp and remicade, so I never took them. But you don’t need them, or anything else, if you follow the diet and read the accompanying book, called “Breaking the Vicious Cycle.”
Here’s the web site:
You can get the book on Amazon for a few bucks. It’s the best $15 you’ll ever spend, becaue it will cure you:
The book explains the physiology and biochemistry of the bowel, particularly the metabolism of carbohydrates in the bowel and how they cause/contribute to IBD.
Also, see a naturopathic doctor. I know it sounds crazy, and I was the most skeptical person in the room, believe me. But now I’m a believer. Conventional doctors know nothing about diet and will tell you that diet has nothing to do with IBD. They are absolutely wrong. In fact, there is tons of science out there demonstrating that diet has everything to do with colitis, and it’s all explained in an easy-to-understand form in Breaking the Vicious Cycle.
Anyway, what the doctors don’t know about diet and nutrition, naturopaths make a career of. My naturopath put me on the SCD and gave me high doses of Vitamin D, Omega 3s, and digestive enzymes. Within 4 days, I was about 90% cured from the worst flare-up of my life. A year later, I’m still good to go. It has been nothing short of amazing! I just wish I’d gone to a naturopath years ago.
IBD is primarily a disease of Western nations in northern latitudes. There are primarily two reasons for this: our highly processed, grossly unhealthy diet (the Standart American Diet), and the lack of year-round sunlight. We in western nations are not living in the manner we evolved to live in. We evolved in tropical latitudes (plenty of year-round sunshine exposure) and eating a diet of mostly raw vegetables and occasional animal flesh. Now, however, we live in northern latitudes and don’t get sufficient sunlight exposure, and we eat highly processed foods made mostly of grains, sugars, and dairy products. These foods are not physiologically healthy to consume, nor are our digestive systems physiologically evolved to process them.
Think about it: UC, Crohn’s, and other IBD is virtually unheard of in rural, tropical, mostly vegetarian populations, like tropical South America, Africa, Western China, India, etc. There’s a reason for that: diet and sunlight. Multiple studies have been done on these phenomena; the most famous and comprehensive one, done by Cornell and Harvard, is called the China Study, which you can also get online:
I hope my suggestions help bring you some relief. I’m confident they will. But you have to realize that making these dietary changes will involve substantial lifestyle alterations. I know you would like to be able to drink alcohol, but you should do it in great moderation because it is a bowel irritant. And if you do it, avoid beer and wine, which contain carbohydrates of the type that irritate the bowel and cause colitis flares. Stick to distilled spirits instead.
Let me know how you do with all this, if you decide to pursue it. Cheers, and to your better health!
YOu can get it for a few bucks on Amazon:
What digestive enzymes specifically are you taking??? My naturopath already has me on high doses of Vitamin D, Omega 3s, and probiotics… I’d love some more info/advice/recommendations on digestive enzymes. Much appreciated, thanks!!!
I appreciate your comment! I actually bought the SCD diet book when I first found this website. I haven’t tried it yet because my doctor doesn’t recommend going off the drugs and I’m scared to do so in case I have a flare (My insurance doesn’t cover my “pre-existing condition” and I cannot afford any large hospital bills).
I don’t know much about UC in rural or underdeveloped countries such as you write, but I definitely know what you’re saying. There’s a lot of diseases in countries like ours that do not exist in places that don’t consume the types of foods we eat. You’d sure think our doctors would realize this!
I hope to find a natural pathic doctor in the future to hear what they suggest I do!
Thank you for your insight! Keep in touch!
Steve, I’m curious to know what the worst flare up in your life was? Were you hospitalized? Did you nearly die of loss of blood? That was the worst flare up in my life…just curious what your scale is when you tell people not to take Remicade or 6MP. They may have run out of options. I like the idea of the naturopathic doctor and I’m going to look into this further although I already take probiotics and fish oil. We as a society don’t have the answers yet and what might work for a segment of the population may not work for another segment of it. I believe this disease is complicated and dangerous, and we must press for real answers. Good luck with your natural treatment and I’m glad it’s working for you.
Hi. I’m three weeks into 6MP. Not crazy about it at all but not as scary to me as Remicade and nothing else is working. Question: For those of you who have had success on 6MP, how long did it take to start? My GI is saying 2 – 3 months. Sound right? Thanks.
I started 6MP and Lialda as I was tapering off prednisone, which is what stopped my flair. I believe I was off the prednisone after 3 months with the other two drugs. So basically as soon as they released me from the hospital with those drugs and the tapering off of prednisone, I’ve been in remission ever since.
I’m sorry but drinking a lot of water, downing glutamine, aloe, slippery elm, eating paleo, scd etc is not going to work for everyone. Have you looked into something like fecal transplant? This makes a lot of scientific sense and some have had good success with it. Otherwise, I know that some GIs are now practicing what is called the “top down” approach to IBD treatment – to start with the bigger gun drugs and then if/when they can wean off and onto the lesser drugs or nothing at all. If you’ve been on 6mp for 3 years and are in a solid remission confired by scopes, you might be able to get off of the 6mp without flaring. It has been done and most docs wait 3-5 years before weaning – so you could be in that category. It would be important to confirm remission by scope though?
Thanks, SC! I think my doctor said we can “talk about” weaning off after 5 years (or was it 10…?) I can’t remember, only remember being disappointed. But I will make sure to bring it up again at my next appt. this fall!
Sarah, I am a graphic designer with UC also and want to get of 6MP, I was told it is lifelong……I will be reading your posts to see if anyone has more info…hang in there
Thank you, Barry!! I keep checking back to this blog post hoping to see someone who has successfully tapered off of 6MP! How long have you been on it and been in remission? P.S. Are you on Twitter? I love following other designers, and I’ve never met one who also has U.C.! :) @SarahNoni
I completely agree Graham! I wish I knew how to push for research of this kind.
I’m 31 and at the point where my doctor is suggesting that I start 6mp. My last colonoscopy revealed significant inflamation (which I could have told him without the procedure). The latest flare up has been going on for about 5 months and prednisone doesn’t seem to be getting it under control either. I’ve ready the SCD book but find it very difficult to follow, especially since my wife cooks dinner for my 1 year old son and myself and following the SCD cooking would be such a burden for her. I started taking probiotics and would like to try some of the SCD diet just not sure which foods I should definitely cut out. I’m really nervous about starting 6MP but after reading of the series of posts in here it doesn’t sound as dangerous as I first thought.
Any last words of wisdom :-)
I’m 36 and have just started the 6-MP for CD 3 months ago. I was diagnosed when I was around 15 years old. I did not do any traveling at the time, nor drank any weird water that I know of. I’ve done all the treatments possible except surgery, and the 6-MP is the last attempt at controlling my CD. I’ve had 2 major flairs in the last 2 years, the first of which took an entire year to get under control, only to have another flair as soon as my doctor thought I was finally doing ok. It took 6 more months to get the second flair under control, and now have been on maintenance (6-MP) for 3 months. The only downfall of the 6-MP is hair loss, which I am trying to deal with as best as I can. I would like to get off the 6-MP due to this fact alone, but know the reprocussions of that may mean relapse. In the beginning, I had a very negative relationship with food. I hated eating, and feared the worst every time I put food in my mouth. I may have even bordered on having eating disorders at certain times of my life. I’ve had to learn to turn this negative thinking around and start forging a more positive relationship with food. I adhere to a strict Paleo Diet and that seems to help. This includes not eating any rice, bread, grains, oats, refined sugar, starch, or dairy, as well as eating gluten free. Gluten intolerance has recently been connected to CD and UC. I take a pretty hardcore regimine of vitamin supplements every day to help give my body the complete nutrition it needs, which I may be lacking in diet. CD and UC is a very hard disease to live with, but we’re all stuck with it. If there’s anything I’ve learned in the last 20+ years living with CD is that Diet Is Key. Reducing stress, staying positive, and learning to listen to the signs your body is giving you helps a ton. One of the first signs my body gives me before a major flair is joint pain. I know my body is not happy when my knees or shoulders start aching. If I back off of food, start a clear liquid diet, and baby my body as soon as my joints start hurting, I can sometimes avoid a major flair. I Hope this helps. :)
LA, what dose of 6MP did your doctor start you on?
He started me on 50mg. I am a small female 5’2″ and 113 lbs. I’m not sure if your Dr. would give you a heavier dose. Dosing should be at 1.5 mg/kg/day. I technically should be taking 75mg, but my Dr. started me out lower to see how I would handle it first. I am torn about it, because physically I feel so much better! But my hair is falling out by the handful. This didn’t start until recently though. It took 3 months before this started happening.
It’s hard to follow the diet, but I’d honestly say if you just cut out the bread, grains, rice, and oats, (gluten) you will notice a significant difference. That way, your wife can cook mostly anything, and if she has these things on the side, you can choose not to eat them, and your wife and son will not have to go without. For me, my basic rule is: if it’s not fresh don’t eat it, and chew everything really really good. I can’t remember the last time I ate fast food, or anything in a can. But even though I’ve still had flairs, I still feel much better than when I do eat those things. It’s bitter sweet, because I get cravings bad sometimes just to eat a giant sandwich or a bowl of cereal.. lol, but you do get use to it after awhile.
LA, try remicade. My last two bouts were horrible. No diet worked. I just eat bland nothing tasting food and nothing worked. I became steriod dependent, which was not good. Mood swings, irritability. The remicade got me off the steriods and I have been in remission for 6 months, no steriods and reduced 6MP.
I spoke with my doctor a couple days ago, and have convinced him to let me go off of the 6-MP. I can’t handle the hair loss. This is day 2 without and I’m taking it really easy on the food. He said he didn’t want to put me on anytihng else right now to replace it, and wants to see how my body does without anything. Wish me luck.. My body does respond well to steroids, but he obviously doesn’t want me to have to take that longer than necessary. I wish we all could find that magical combo of food, exercise, or whatever it is, to not have to take any of these harsh drugs. I’m suppose to call him immediately if I flair again, and we will start the vicious cycle again. Hopefully my body will cooperate. Thank you for the suggestion of remicade. I haven’t taken it yet. I will ask him about it on my next check up, and see what he says. I am hoping and praying I can keep my body in check without any of these drugs, but we all know that sinking feeling, knowing it’s only a matter of time.. None the less, I will stay positive, listen to my body signs, and hope for the best, and you bet I will let you know how it all unfolds. Lol, I kind of feel like a ticking time bomb, but I’m going to try extra hard to keep my body happy. We’ll see. :)
6 days after stopping 6-MP, and my immune system is kicking into overdrive… My knee is killing me and I’ve dropped 4 pounds. This could get ugly.
Hi, Remicade is a wonder drug, in my opinion, but it has a limited lifespan of help. It was the cure for me for five years then I developed an antibody to it. I also hear that Humira is better for CD. For me (UC), Humira gave me horrible skin rashes and peeling…and I could not recover from a simple cold. Had nasal congestion for four months and lung issues.
Do you take probiotics?
Hi Marie, sorry for the late reply. I am scheduled to see my doctor in the next couple weeks again for a follow up. I’ve had some ups and downs since stopping the 6-MP. The worst being that I have lost quiet a bit of weight – 18 pounds in about 2 1/2 months. I’m hoping when I get my blood draw for SED and CRP that it is normal or as close to normal as possible anyway. I’ve never tried Remicaid. I will look into this as a possibility if my blood work comes back with elevated inflamation levels. I do take probiotics daily. I can’t really tell much of a difference between when I was not taking them and when I started though. So far, it’s been a couple months now and things are still going OK. I’ve had my days, good and bad though. Thanks for you’re reply. I will make it a point to do better at checking back more often.
Hi there, I’ve just come across this post and it’s great to read people that are going through the same worries as me. I’m 19 years old and have crohns disease. I have been on multiple medications but unfortunately keep having severe allergic reactions that usually end up in long stays in hospital and as a result 6mp is one of my last options. Like you I struggled with the high doses of prednisone and had the puffiest face ever! Along side the sleepless nights massive weight gain and I was always hungry! My moods from the medications are out of control at the best of times and while taking imuran i lost almost all of my hair! I’ve have only been on 6mp for a week or so now but after reading all the side effects people have experienced I’m not sure I want to continue it. Like a couple of people I also fear about deciding to have children. When I think of the medications all I can imagine is the toxic substances I am feeding my body. I can’t be good. It would be great to talk to anyone who has questions advice or tips and are going through a similar proces!! you can email me at firstname.lastname@example.org
Hi Sarah, I’ve been to at least six sub-specialists from Stanford to UCSF over the past ten years. My UC officially started in 2005 but I never made the Mexico connection until your post. I know they don’t have a cause…but that they know there is a combination of factors that make the pre-disposed susceptible to UC (one which is bacteria, another is antibiotics five years prior to UC, etc.). I went to Mexico with friends just before the major UC start. Doctors say that it really was started in 1991 (college years for me) and paused for four years. I don’t believe it.
I’ve been on everything from LIalda to Prednisone to Remicade, then Humira and now 6MP. If you can tolerate Sulphasalazine, it is the most recommended drug by sub-specialists for moderate UC. Lialda is the lowest on the totem pole of help and may not even be necessary if you are on 6MP. You must not be allergic to Sulpha in order to take this. I’ve had long stretches of no symptoms and also the worst UC ever right after having my daughter. Pregnancy can take on three forms: It can quiet UC, it can help it get better, or it can worsen it dramatically. Mine got worse and they threatened surgery. That’s when I had to go on Remicade which worked for almost five years.
I find that probiotics and vitamin E pills help. I’ve had the gluten scope test done and I’m not gluten intolerate but my blood tests show ‘could go either way.’
I think we should all keep trying to make the connections and put out what’s working. Humira and Remicade are Billion dollar businesses and not incented to cure. We need to push for the cure (or prevention) and I believe it’s out there. I personally feel (through research) that it’s a combination of genetics (predisposed to get it), diet, some kind of ‘start’ such as bacteria overload, yeast, or possibly environmental aspects. What’s bizarre to me is that this is a Caucasian disease (Europe, Canada, Australia, US) and people from other countries that come to live in the US are now getting it younger and younger. So either the other countries are treating it better with diet and homeopathic ways, or we provide the environment, antibiotics, and/or diet to get it.
I’m so happy to have found this website!! It really helps reading about everyone’s experiences with UC.
I am a 23 year old who studied abroad in Argentina 2 years ago and started developing symptoms down there. I was there for 6 months and did drink the water, eat the fruit, etc. I came back to the States and was misdiagnosed for about a year until I ended up in the hospital in March. FINALLY they figured out that I have a moderate case of UC. I have been on Lialda since March, had a bad flare in May-spent a week in the hospital and on Prednisone (which helped me go into remission quickly, but was an awful drug). I hate Prednisone. I had many symptoms- hungry all the time, puffy face, acne, joint aches, mood swings of anger and depression, couldn’t fall asleep, and just overall restless and irritable. Right after I weaned off, I felt UC come back little by little and was put on Rowasa. My Dr. wanted me on Rowasa for two weeks, then after the two weeks, to take it once every three days. Instead of three, I just tried once every other day and don’t feel as well. So, I will keep taking it daily. If the Rowasa doesn’t help, my Dr. wants me to start the 6MP. I am very hesitant about the 6MP as I am with taking all these drugs. My body is very sensitive and I am likely to feel all the side effects. Has anyone had any success from Rowasa enema??
I have been on the SDC diet (no gluten,starches,sugars, and only some dairy) since I ended the Predisone, (almost 2 months now) and feel like it has def helped me regain a bit of my energy and stay clear of GI pain after eating. The other day, I ate something that had a tiny bit of sugar on it (which I found out after I ate it) and ended up extremely tired. I slept all day, had a bad head ache, and could barely get up. I am also taking multi vits, vit c, vit d,cod oil, digestive enzymes, glutamine, and probiotics. My nutritionist told me to the most important thing is to drink 80-100 oz of water and 16-30 oz of watered down cabbage, green apple, fennel, parsley juice a day on an empty stomach. He also recommended adding 1 oz of whole leaf aloe vera (bc inner leaf aloe is a laxative) and glutamine powder to the juice and drink on an empty stomach in between meals. ALSO- to avoid drinking anything that is cold because it will shock the GI track. Acupuncture has also helped me deal with the emotional distress that comes along with UC. Before I got sick, I used to run and jump rope at least 3 times a week,and was in overall great shape and health. Now, I find it very hard for me to find the energy to exercise. Walking and yoga is about all I can do, but even that wears me out. I know that running will help me feel much better and will help me deal with emotions but I just don’t know if my body is ready for that just yet.
UC is just awful. We need to stick together and get through this. Researching/preparing meals/getting enough rest is my full time job now.
There has got to be a cure to this.
I have found this website to be very helpful: http://www.easy-immune-health.com/index.html
Hi I have had UC for 15 years now & have found amongst so many other things that doctors stay on the safety net side of prednisone by giving 50 mg orally max, usually this leads to hospitalization and IV pred for two weeks as the lower dose does not work in the short term.
Gluten and Lactose are a problem & smarties who claim to cure it naturally do not know that are dealing with a genetic disease. UC can be controlled through diet but you have to know what you are doing as every person ‘flares’ to different things – it is individual.
To claim to be able to cure a person and risk putting them through the ordeal of a flare up, courses of pred and the loss of ‘life’ as Sarah puts it acquainting herself so regularly with the porcelain throne is simply not justified in comparison to using methods known to work.
The intestine is soft, moist and relatively thin so repetitive ulceration ‘flare ups’ are not good for it at all, how may people want to have their large intestine removed through negligence?
Any way I have alot to say and can be blunt about it but over the years it have really given me the Sh!+S the treatment dished out by professionals and snake oil sellers.
Oh my apologies I am a 41 year old male and had the disease since 1995
3 months off of 6MP, and my bloodwork is in the normal range. My CRP’s were at 3.9, so a little inflammation going on, but that’s normal for an active disease, so I’m told. I am sticking to my instincts of “diet is key”. I agree with Ben, These diseases are genetic, but can be regulated better if you adhere to a good diet, one that works for you as an individual. My doctor was mad at me because I lost 25 pounds total in the last 3 months. He called me anorexic because I was honest with him and told him that I usually eat only when I’m hungry, and snack mostly on small stuff. I don’t know, my bloodwork shows that I’m doing well.. so what does he expect? I don’t believe you have to eat 3 large meals a day and 2 snacks in order to be labeled as “healthy”. Maybe that’s why 80% of the population is obese, actually.. ?? I suppliment with vitamins and minerals every day, so it’s not like I’m lacking in nutrition by any means. I’m torn.. mostly because I feel good physically and my blood work shows I’m doing good, but my Dr. hurt my feelings by saying that to me, when clearly he doesn’t understand how it actually “feels” to have CD or UC himself. So do I eat more, and risk a relapse just to make him happy? Or do I keep on guard and continue to do what I’m doing to keep feeling better physically? So frustrating!! :(
LA if you would like to know what I use in my diet you can email me & correspond that way, simplest things are often the best.
Ben, I would like that very much. My email is email@example.com. Please identify yourself in the subject line, as your first email would probably go in my junk mail until I add you to my contact list. Thank you very much!! I really do appreciate it. :)
My grand daughter (12 yrs. young) was recently diagnosed with Crohns or similar intestinal malady and has been prescribed 6MP which to me is scary stuff. I have encouraged her parents to seek alternative opinions and possible cures before starting her on the drug. I have read recently that fecal transplants have a 90% success rate in alleviation of some of the Chrons/collitis symptoms. From reading the many posts above it seems to me that many sufferers have had major disruptions to their digestive micobial ecosystems, either by water borne pathogens and or/ by subsequent antibiotic treatments and that restoration of the “normal” or healthy ecosystem might be a relatively effective cure. See (http://www.azcentral.com/12news/news/articles/2011/10/31/20111031arizona-fecal-matter-transplant.html) for a sample of this alternative to drugs. Wishing you all well.
Grateful to know we are not alone as there is healing power in story telling.
Today I am frightened about the negative reaction I now have from 6MP.
I was diagnosed with UC in March of 2008. I started to feel pretty sick in Dec of 2007. I also traveled, and was in India a few months prior to getting really sick. Yes, I believe it is all connected, something of a perfect storm when the body cannot fight off the infection and then it mimics itself even when it is gone. I too, do not like taking any kind of medicine.
I have been on all of them. Was allergic to Remicade (mouse component!) I go in and out of flares over the past 4 years.
The last 6 months I have been on 6MP with folic acid (as this helps to avoid the pancreatitis assoc. with 6MP). For the last 4 weeks I have noticed an alarming amount of hair loss and went form 62 mg down to 50 mg and now today my doctor said to go down to 25 mg. I want to go off immed as all of my arm hair is gone, and my head hair loss is so bad I have to consider a wig soon. The issue is, this is the only drug that has worked and after weaning off the prednisone in April this is the first time in 4 years where all of my energy is back and I feel great, blood work is great etc…
Has anyone else had severe hair loss on 6MP and found another drug that has worked as well besides Cimzia and Remicade?
Swift Nutrition is a great site, Kathie Swift is an amazing nutritionist who works with Dr Mullin (head of GI at Hopkins) who wrioe this great book on food and GI issues. Eating a low FODMAP diet I know has been critical to my success. I am wondering if I go off 6 MP and keep on this diet will it be enough? I have to get off 6MP and am concerned about a flare up.
I have terrible headaches, a rash a round my nose and this hair loss.
Am open to your thoughts on this..has anyone gone off 6MP cold turkey and not had a flare up when blood work was good for 6 months or so?
Thanks and wishing you all Great Health!
I didn’t read through everyone of the comments but thought I would share my story with those women who are worried about have children in the future. I was on 6mp and Lialda for a little over a year when I decided I wanted to get pregnant. I was in remission and feeling great so I went off the medication and 2 months later got pregnant. I remained symptom free without medication throughout my whole pregnancy and while breastfeeding (I think it had to do with the hormones). Once I stopped breastfeeding the symptoms slowly returned so I am now back on the medication. But, I have a beautiful and healthy son! If you are symptom free during pregnancy do not let doctors convince you that you need to stay on the meds!!!! This happened to me and I couldn’t believe they would suggest that. I hope this gives peace to some of you!
My 19 year old Daughter Kelly was diagnosed with UC about 3-4 years ago. After an initial hospital stay and 6 colonoscopy’s since, she been on many drugs including prednisone, pentasa, multiple antibiotics etc. For almost 4 years she failed to enter remission. 2 months ago at her last colonoscopy she was not only diagnosed with a major flair-up but also tested positive for C-Dif bacteria in her G.I. Thankfully an agressive round of antibiotics knocked the C-Dif out of her system. Her Dr then started her on 50mg/per day of 6MP which she did not tollerate very well as her liver enzymes began to elevate. So off the 6MP she went until the enzymes returned to normal. Now she is back on 25mg/per day of 6MP and for the last 10 days I have heard her say each day that she “feels fine and no bleeding.” I struggle with the thought of her being on this drug but at the same time it warms my heart not to see her so sick as she has been for so many years. This week we’re getting her blood levels checked again so hopefully she is tolerating this lower dose.
I was also in Mexico shortly before being diagnosed with UC. It was a short weekend trip to Rosarito. I don’t remember if I drank the water but I was definitely drinking. Wouldn’t that seem to indicate that it’s some type of infection or parasite rather than an autoimmune disease? Since doctors have no idea as to the cause, I just don’t know.
As for me, I’m 30 years old and I’ve had UC for 8 years. I’ve been on Asacol 4.8g/day the entire time. I’ve tried both Imuran and very recently 6MP. Both were absolutely terrible. Extreme fatigue, feeling sick all the time, loss of appetite, and my god the metallic taste in my mouth! So bad. I’ve had plenty of rounds of prednisone use with flare-ups. Miracle drug that one. I’m also trying out 2g/day of Curcumin (active ingredient in Turmeric) after reading that it’s got some really positive data in maintaining remission.
I stopped taking the 6mp 2 weeks ago because I couldn’t handle it anymore. Haven’t told my doctor yet because he said if I did stop it, he recommends that I start Remicade. I am weaning off prednisone right now, currently down to 10mg/day. I started the Curcumin a few weeks ago. So I kind of want to see how I do once I’m off the steroids, maybe I stay in remission? Remicade seems really intense, having to go in for infusions.
Anyway, just trying to stay as stress free as I can! Thanks for reading.
I was diagnosed with UC when I was 12 (I am now 28), went into remission and flared pretty bad in 2009. After a year of flaring and having bad reactions to all of the 5-ASA drugs I went on azathioprine. Went into remission like a champ for a year on the meds, got off the meds and stayed in remission for another year. Just flared again in November 2012 and landed myself in the hospital last week. I am now on prednisone and 6mp. Ready to feel healthy again! I do believe that you can come off of 6mp and stay in remission. I did it for a year and believe the only reason I flared again was because I got a stomach virus and it threw everything out of whack. My plan is to stay on 6mp for a year and then get off again. Wanting to start a family with my husband.
I just wanted to share my story because I believe everyone with UC has a totally unique story. I am sending virtual hugs to all of you!!!
I have CD since I was 13. Had quite a lot of problems as a teenager and went for homeopathy when I was 20. I got into remission after a year and was in remission for 15 years taking probiotics and sulfa (later Asacol). I travelled a lot to China and even to Egypt twice without problems. Then I went to India, but was only a little ill. Some years later I was in Moscow and got ill, and before getting well I went to India and got super ill. Because I have CD my Swedish docs never did a serious investigation into parasites, but put me on Remicade, which suppressed the flare. But I got heart problems from remicade and also the problems with my stomach continued as I ate Imuran/Azathioprin. After eating at a bad Chinese restaurant I got a severe flare, which ended up with the MD giving me Remicade, me getting a bad allergic reaction to it and after 3.5 weeks in hospital they finally gave me Cipro and Flagyl and my colon got happier. They also gave me Humira but it didn’t have any effect.
Recently I went to a naturopath who used bioresonance therapy. Acvording to him I had 5 different parasites which he gave me treatments for. Three days after the first treatment I got super ill for one day, then stable again. I have been super ill once again but last time I saw him, he only found one kind of parasite. It seems like I picked up Giardia in India.
Parasites are nasty to us with bad guts. They go into hiding, procreate,laying eggs in your intestines which crack open every month (at full moon according to Hulda Clark), which means that you need to take parasite medicines for at least three months to make sure that they are really gone. This is probably why naturopaths are so successful in treating CD and UC, but also why diet helps so many. The entire idea of SCD is to starve out patogenes in our guts, and that also explains why I can’t take gluten or casein /cow milk protein despite the fact that allergic test say I should be able to eat it. Especially wheat is known for being bad for those of you with UC and also CD in colon. Thus also means that unless you skip gluten totally you will not get well.
My point is that it is probably not Cipro that got you ill but the fact that you still have those nasty parasites from Mexico or wherever you picked them up. This is why Crohn’s Boy drinks highly poisonous collodial silver every day and Why Listen2yourgut-Jini Patel Thompson recommends wild oregano oil to be taken for months: they kill of germs and parasites. You can read more about SCD on SCD Lifestyle. They recently wrote about parasite tests which could be done to find out more: http://scdlifestyle.com/2013/04/6-gut-infection-case-studies-why-you-should-get-stool-testing-done-asap/ Good luck everybody!
And one more thing: I think azathioprin works with UC/CD because it keeps the parasites and patogenes under control.
I was diagnosed with UC when I was 20 (almost 23 now) after having a bad bout of the norovirus after a soccer trip to Florida in December 2010 (I played soccer and ran track in college). It took a couple months to diagnose but by the next April I was on asacol which seemed to rid of my symptoms. When they came back after a few months i ended up on 40mg of pred and 50mg 6mp which i wasnt happy about. My senior year of college I had a major flare during soccer season that landed me in the hospital twice, one time having hand foot and mouth disease due to no immune system protection and the other just really bad flare symptoms. The pred was awful. I got no sleep for months, had achy joints, my face was huge, just terrible. Trying to finish school was the worst, but I managed it somehow. I wasn’t getting better and switched GI doctors last summer and found out I had CDiff which was most likely the cause of my flare that my other GI completely disregarded so I got treatment for that. Since then, the CDiff is gone, I have been off the prednisone and have been in remission for almost a year (at least I think so!). I even started grad school and have been doing perfectly fine! My doctor did try to start me in lialda instead of the 4800mg of asacol i take a day, but i broke out in a rash which ended up being rosacea so i wwent back to asacol and have been fine. My concern now is that I don’t want to be on 6mp forever. I am a young adult and want to be able to drink socially without worrying about feeling terrible the next day and be able to sit out in the sun and not burn to a crisp even with sunblock on. I also get mystery bruises from this stuff! I have read about some of the issues and just don’t like what can happen with this drug even though it has done so well for me. I want to be able to have kids someday too and not have to worry about this medication. So I agree with a lot of these posts that if someone successfully weens off this drug let us know! My doc has said I’m on it pretty much until I have issues with it. :(
I was diagnosted in 1988 with UC. I fought with it for 10 years. I am in remission since 1999. Some flare ups for no relapse. Two weeks ago I took myself off 6MP. It was my option. My doctor doesn’t know. I haven’t been able to see him in 2 years anyway because he can’t have appointment for me. I figure if I relapse then I do. I don’t recommend to do what I did in any means. I am a happy father of a 2 year old or almost 2 year old daughter. I was on 125mg of 6mp for 20 years. Good luck.
After reading through this – I wanted to add my experience which is very similar to many of yours. About 3 years ago, I travelled to China – while there I picked up giardia (didn’t drink the water, but got it somehow anyway).
A couple weeks of symptoms, finally got tested and I was put on Flagyl to eradicate the Giardia. Flagyl was horrible, made me feel sicker than ever. Things went downhill and I ended up in the hospital. Within a month of the onset of Giardia symptoms I’d lost 30 lbs and was diagnosed with UC. Finally brought the flair under control with prednisone and lialda.
Was on liada for about 1.5 years and it was working great until I relapsed last April 2013 (i do think the latest flare was stress related). Spent nearly a month in the hospital (and extra 2 weeks due to getting Cdiff when in the hospital).
Back to the point – I definitely think there’s a correlation between Giardia (or similar parasites) and the onset of UC symptoms. It’s like the immune system turns on full-bore and doesn’t shut off. Before this, I never had any sort of UC symptoms (for the first 41 years of my life – now I’m 44). I strongly believe there’s some connection with Giardia and UC, wish we could push for more research in this area.
Due to the last flare – I’m on 150mg of azothiaprine, and take 2 liada pills per day. I also take a probiotic every night before bed. I don’t like the thought of taking meds for the rest of my life but I feel like i’m doing pretty well with little to no side effects from these meds.
I was diagnosed with UC 4 years ago after a trip to India. I also was convinced it was a parasite since my symptoms started as soon as I got back from that trip. I saw a Naturopathic Physician and after a few tests, including a colonoscopy at the Gastroenterologist, we put together a treatment plan. This included a strict GAPS diet, avoiding food allergens, herbs and nutrients to heal the gut lining and an anti-parasitic treatment (medications). After 9 months of all this, I went into remission and have been in remission ever since (4 years). My last colonoscopy (a month ago) was completely clear. If you can get to a licensed Naturopathic Physician who specializes in digestive issues, I would recommend it highly!!!
hi all and thank you for your interesting and informative posts and stories.
just wondering i this thread is still active?
I’m curious to her how you’re going?
I’m 42 have CD for 10 years now, going on almost 3 years of 50mg MCP daily.
I’m 39 and was diagnosed with UC when I was 15. I feel like I have taken the gamut of drugs. My recent flare was about two years ago. It was brought under control with 6mp and prednisone, but I was still riding the thin line of health. After weaning off the steroid, I stopped taking 6mp.I hate to be on any drug, especially immunosuppressants. I have turned to a more natural theropy of kombucha, which maintains a colony of healthy bacteria in my gut, and gelatinous chicken stock made from chicken bones which is great for the lining in my colon. I can’t remember ever being so healthy in my adult life. My guess is that something you ate or drank in Mexico blew out your good bacteria in your gut and then your lining of your colon became comprised. That could lead to the absorption of food or whatever in your blood which should have been processed by the bacteria which wasn’t there. That leads to your immune system attacking these things leading to more irritation and more immune response ultimately leading to ulcers, a difficult cycle to break. We need good bacteria colonization and robust gut lining. Anywho, kombucha and bone broth, which contains great proteins contemporary people don’t often get, are healthy and not addictive . It couldn’t hurt.Give it a shot for a couple weeks, oh, and refined sugar and processed foods are your enemy. Good luck!
Hi all, my name is John and I reside in the North of Ireland where IBD is quite common, particularly among the twenty somethings! I have been living with this disease for the past 32years, I am 52years of age now. In many ways I have struggled to live life to its full capacity, however, I am thankful to have had the opportunity to have come this far. By no means am I unscathed, UC has cost me an awful lot including marital breakdown and some short-lived mental health issues. Despite these challenges I have managed to navigate my way through difficult times and do not blame UC as the sole cause of misfortune. I started out on salazopirine and onto pentasa before eventually commencing 6MP some 9 years ago. In my view 6MP is inclined to maintain stability, however, for the past 4/5 years I’ve struggled with nausea, peripheral pain in my neck and back, hair loss, lethargy and overall, pushed to the limit. As a result I recently persuaded my GP to stop 6MP and recommence 5ASA. I’m nervous and fearful that I could relapse and suffer the consequences of a flare up at my age. Nonetheless, I intend to remain positive and accept whatever outcome materializes, I am fed up with feeling unwell and believe now is the time to change as I enter the statistical last 3rd of my life, so here’s hoping. Good luck and God bless to all of you IBD sufferers who have a long life in front of you. Do not let UC stand in your way, some day we will conquer it altogether. To conclude, there is no history of UC in my family, although one of my daughters has been recently diagnosed, modern living perhaps, or maybe additives and preservatives in our water systems, can’t be right drinking re-cycle sewerage!!! Yep, man will destroy himself.