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!

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….

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 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!!

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

Sara,

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:

http://www.breakingtheviciouscycle.info/index.htm

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:

http://www.amazon.com/Breaking-Vicious-Cycle-Intestinal-Through/dp/0969276818

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:

http://www.amazon.com/China-Study-Comprehensive-Nutrition-Implications/dp/1932100660/ref=sr_1_sc_1?s=books&ie=UTF8&qid=1329668840&sr=1-1-spell

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!

Steve

YOu can get it for a few bucks on Amazon:

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?

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. :)

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 beckstacey@me.com

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.

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

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.

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.

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.

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.