Meet Dallas:
Married father of 3. I have been flirting with flares on and off since I was diagnosed back in the summer of 2011. I have been spared the true nastiness of this disease–I realize it could be much worse.
Some more about me:
I enjoy reading, hanging out with the family and early morning walks. I used to run long distance, but that started forcing me to make bathrooms where there were none–had to give that up because that can cause a problem in broad daylight. I live in the Florida panhandle and have access to one of the most beautiful beaches in the world, so I take advantage of that any chance I get.
Current Colitis Symptoms:
A little bit of blood, mucous, and gas.
6MP
In a bit of a flare at the moment. About a month ago both of my daughters came down with Strep and that sent me into a tail spin. Before that, I had been in a 6 month remission so to speak–no blood, mucous, or any of the nasty stuff. My gastro calls my condition mild to moderate, but stubborn–it involves the rectum and a little of the sigmoid colon. I am currently going 3 to 5 times in the morning. Just a little bit of blood in an otherwise decently formed poo. For this flare, I have noticed more mucous and gas. Luckily, I am an early riser, so I am usually done with the toilet trips by 7am. After that, I have a pretty good day with relatively no symptoms until the evening when I get gassy and I have to clear out the mucous–usually just a couple of quick trips to the toilet takes care of it. I able to sleep through the night with no problem. No cramps, no pain.
I went for my quarterly visit to my gastroenterologist and told him what was going on–just a small flare that I am getting through. He now wants me to try 6MP or Imuran and get “completely symptom free”. I told him I didn’t want to trade colitis for cancer and he just smiled and said there was only a “small” risk of that and that leaving a colon inflamed has risks too. I don’t know if I am quite ready for that yet. My family doctor, who I have known for years said in the past not to go on immuno suppressants unless it was absolutely necessary and to try everything else first–there are some bad side effects. He is under the impression that diet, anxiety, genetics and environment play more into this condition than the medical profession lets on–just no research (I agree with him). I had mixed results with Enemas–hydrocortisone seemed to make it worse while the mesalamine enemas seem to frustrate my colon, but eventually they get me to a recently better state. I think I struggle with the preservative in those things. I asked my gastro to let me try the foam and possibly switch me to Apriso just to see if that gets me completely symptom free. I have never fully devoted myself to the SCD or any other type of diet, although I have recently cut out milk products and that has made a huge difference. Probiotics have also been beneficial.
The way I see it, I don’t know if I will ever reach a perfect state. Even when I am in remission (no blood or mucous and formed poo) I still go to the bathroom 3 or 4 times in the morning, but it doesn’t interfere with my life. I feel like if I take 6MP/Imuran that it would be like turning a water fall on a match.
I really need to know what other UCer’s experience has been on these drugs good and bad. Is this the route I really need to go?
Colitis Medications:
Lialda 4X daily
15 billion Probiotic
Fish Oil
written by Dallas
submitted in the colitis venting area
34 year old married father of 3 who I adore. I have had some sort of issue or another with poo since I was Diagonosed with Ulcerative Proctosigmoiditis in June 2011.
Hi Dallas,
You have very much the same symptoms as I did at one point. When I was diagnosed with Ulcerative Colitis (Proctosigmoiditis) back in 05, the mornings were awful, but as soon as I got out of the bathroom I would have an excellent day, until evening, when I kept running to the bathroom. I was on Lialda 4/day. Things were fine. The problem was that as time went on, I got progressively worse. It was very gradual, but around 2010 going to the bathroom in the morning no longer guaranteed that I was going to be ok the rest of the day. My doctor wanted to put me on 6MP and I was so fed up with my situation I wanted to try it. My parents convinced me not to. I’m glad I didn’t. The thing with these medications is that while they do make you feel better, they don’t address the problem you are having. It’s like painkillers. If you hurt your arm and they give you painkillers you think you can do whatever you want with your arm, but sooner or later the painkillers will wear off and your arm will be worse than before because you haven’t address the issue and allowed it to get worse. My point is that I don’t recommend you go on 6MP. Try the natural way. You have cut out milk products and you have noticed a difference. That’s great! Try gluten free. Try grain free. Try SCD. This stuff works because it addresses the problem. I’ve been on SCD for 7 months and it has changed my life, very slowly, but very surely. Take a good (lactose and bifidus free) probiotic. Look into fecal transplant therapy. Try Low Dose Naltrexone. There are many options you can pursue that will not damage your immune system. I strongly recommend SCD to you because I have the same diagnosis as you and I had exactly the same symptoms and saw tremendous improvement with SCD. Best of luck to you in whatever decision you make!
i have taken 6mp twice. i had to stop the first time due to high liver enzymes and the second time i stopped, it was because my neuropathy was getting worse. my enzymes were also high the second time, too, but i just couldn’t deal with numbness/tingling in my feet and legs at ALL hours of the day. i don’t know if it did anything for my UC the first time just because i was on it with a lot of other things. the second time i took it, i had no decrease in UC symptoms.
i haven’t met anyone that has gotten cancer from 6mp and i talk to a lot of people who are on it. the most common problem seems to be with the liver.
Hi Dallas…
I would say…NO!! Those drugs are dangerous, and although they may stop the flare, it is simply masking the UC, and it will return. Usually, the drugs will fail after that. Our bodies tend to build up antibodies to these drugs, and they stop working.
Then, all you are left with is whatever short and long term side effects may come with it. Is it worth it? No!
You mentioned your daughters getting strep…why did that cause you to flare? Can you elaborate? Did you get strep as well, and have to take antibiotics?
I am only taking probiotics and L-glutamine powder. No more meds. They stopped working, and the side effects made me feel terrible.
Just my two cents on these ‘cancer’ drugs that are used to treat UC. I don’t believe in them. That’s just me.
Cheers and good luck:)
Hi Bev!
I think what Dallas was trying to say, reagarding his daughters strep, was that it really stressed him out to deal with their illness. Thus, aggravating his UC problems. Don’t you think that’s what he meant??
Hey Natalie!!
Could be…I thought he might have got the strep from his girls…and then had to take the dreaded antibiotics…lol
Stress is definitely a biggie!
Happy holidays to you my friend!!
You may be right Bev! Dallas never did answer so we’ll never know.
Happy Holidays to you too Bev! May you CONTINUE to enjoy good health into the New Year!!
Hello there.
i havent gone on 6mp yet but ive been on plenty of other immunosuppresors. Im 19, diagnosed at 17 with severe ulcerative colitus and have never been in remission even with those drugs. with my experience thus far i would hope that u wont take that medication unless you absolutely have to. immunosuppressives have soooo many side affects and a lot of them are verrrrryyyyyyy dangerous. Way to come up with it is it worth the risk? is your disease to the point where youd do anytthing to get rid of it? is it ruining or threatening your life? or is it just an annoyance? think it all thoroughly through first and then decide :)
I am in the hospital right now after being on 6mp for 3 weeks. I had blood work done last week and levels were fine. This week I got fever and severe body aches. I thought maybe I had the flu, but I started to get pain in upper stomach under chest andvwentbto ER throwing up and diarrhea , I even fainted from the pain! Ends up that a side effect is pancreatitis and my levels were out of control and I have been here in pain for 4 days!
Of course the took me off the 6 mp but I refuse to go back on any of these immune suppressant drugs. I am down to 15 mg of prednisone and not sure what to do. What kind of diet do you all suggest? Probiotics? I am so tired of not getting better!
Laura…I am so sorry to hear this. These drugs are so precarious and dangerous that I would never take them either. My doctor tried to get me to take them after the asacol failed to work and I said I would not ever take them. I would have surgery first…
I have pancolitis…and have had UC for 15 years. I am in REAL remission for the first time in that 15 years and am on NO meds at all any more. I had been on asacol in varying amounts for 13 years straight and it steadily made me even sicker…nausea, weight loss, increased looseness and bleeding, hair loss, acne…etc. It never really even helped, but I kept taking it cause the doc said that I HAD to…forever…he blamed all the side effects on the UC itself…HAH! As soon as I stopped taking it, I felt normal and human once again!
Now, I definitely recommend a good 50+ billion probiotic (I take ULTIMATE FLORA CRITICAL CARE by RENEWLIFE). Along with that, I take L-glutamine powder everyday (which actually HEALS the mucosa of the colon), and 4000 units of vitamin D.
Let’s all make 2013 a UC FREE year!! Everyone should at least try a good probiotic…first thing in the morning, on an empty stomach…I think this matters!! This, along with the L-glutamine, and getting your vitamin D levels up…try it!! Please!!
All the very best to you,
Bev:)
What brand of L-glut amine powder do you take Bev?
Thank you Bev! I just got out of hospital tonight and I am going to health food store tomorrow. Do you follow the restricted carb diet as well? I was reading it, and seems very hard to follow. My follow up is next friday at the gastro and wants to discuss Remicade and absolutley do NOT want any more meds, just want to wean off prednisone and change diet. How long on probiotics until you see a difference?
Laura :)
I actually don’t follow any diet. I’m lucky that way. Only too much wheat seems to bother me, so I don’t eat too much of it.
As for probiotics…believe it or not, for me, it only took days to notice the difference. When you take them seems to matter as well…first thing in the morning, on an empty stomach, with water. Then, don’t eat for awhile…like an hour or so. Also, the probiotics took every symptom away(pain, urgency, gas, bloating, etc) except for the bleeding. That’s when I went to the health/vitamin store and was recommended the L-glitamine. Within two days, the bleeding had stopped. I never forget to take either of these…I am very stringent. I think that’s important.
My vitamin D levels were very low, which I was unaware of. I found out after a blood test. I started taking 4000 units, with fats, because they are more easily absorbed with fat. I think vitamin D is important for inflammation.
Good luck Laura. I hope this works for you as well.
WOW Bev! I have the same story with the asacol as you. I believe my original symptoms came from heavy doses of Ibuprofen foe a pinched nerve in my back, then i was prescribed asacol and it all went downhill from there, when i told my doctors (after landing up in hospital because my symptoms got out of control after they bumped up my asacol dose for the third time in a month due to my condition deteriorating each time they increades my asacol dose) that i was sure asacol was the PROBLEM they told me it was all in my head and if i didn’t take it they would have to cut my bowel out within a week. I refused to take it and WOW. within 24 hours my flare up had stopped. within 48 hours, I had no symptoms at all. close to a month on, and I have had absolutely no symptoms at all. Then my specialist rings me up and says he wants to put me back on Asacol because i HAVE to be taking SOMETHING to be in remission? To my mind, this is just sheer idiocy. Taking pills when i have no symptoms…. Most of these doctors should just admit they don’t know anything and leave the patients to sort what works for them….. as for 6MP etc, unless you’re flaring like crazy all the time, it’s like nuking an ant in your own kitchen, the side effects are absurd. I bet the doctors wouldn’t take them if they had U.C and the info thay are privy to……
Gus…isn’t that unbelievable? That the doctor contacted you and said that you HAD to be on SOMETHING for maintenance?? Even though you are having NO symptoms at all anymore??? Same thing happened to me. All of a sudden, the loss of my $400+ per month asacol habit at the pharmacy was noticed, and not only did the doctor contact me, but the specialist AND the pharmacy did as well! All within the space or two days…made me wonder why the heck I was so important all of a sudden…mmmm. That was a huge monetary hit for the pharmacy, I guess, my monthly put out for the asacol. Also, the specialist (who, by the way, you can’t even get an appointment to see for 3 months at least)was suddenly contacting ME to see me ‘right away’! When I went, there was the admonishment for discontinuing the meds on my own, and 100 questions about what I was taking, and why I was feeling so good again…it was the weirdest thing ever!
This is precisely why I will NEVER take UC meds again. I mean never. What you said about nuking an ant…lol…really! Exactly!! It is truly absurd, as you say.
That is my story in a nutshell. After meds like asacol stop working, or make things even worse, there is the spiel about immune suppressors like Imuran and Humira…and MP6…what a load…overkill on how to treat UC…so danberous…and they never work for very long either…so sad. We just believe it because we are desperate and don’t know any better. What a huge f-around! I am so happy I took my treatment into my own hands, otherwise I too may not have a colon any more.
How many more people have to go through this three ring circus????
Cheers:)
Hi Laura,
I don’t think the brand matters, but it’s North Coast Naturals and it is fermented. I think fremented is important.
Cheers:)
Hi Bev,
My parents just went to healthfood store snd got me everything you listed. Im so eccited to start. Do i take all 3 together on empty stomach in morning? Thx!
Laura
Hi Laura,
I actually only started with the probiotic…however, if I had have taken the L-glutamine right away, it may have taken the bleeding away sooner…I’m not sure! I took the probiotic for about a month and every bad symptom of my UC went away, except for some bleeding…then I started taking the L-glutamine, but I am sure you can start them on the same day. Why not?!
Take the probiotic first thing in the morning, empty stomach, with water. I don’t eat for at least an hour after that because I exercise. I take the L-glutamine (about two heaping scoops, the scoop is included in the tub of it)mixed with a bit of juice(because the L-glutamine doesn’t taste that great alone)about a half hour before I eat lunch.
Then, I take the vitamin D right after I eat lunch, because it is absorbed better with some sort of fat or fattening food.
Man, I hope this works for you too. I’ll be thinking about you! Give it a good week…and PLEASE let me know what happens, okay?
Cheers,
Bev
Hi Laura,
I am curious to hear if you have had any improvement with the combination of Probiotics, L-glutamine and Vit-D that Bev has been so successful with? I know it has only been about a month since your last post here, but perhaps you have already seen some positive changes? I hope you’ve had a good reaction thus far.
Has anyone else has been following this same regimen of supplements? There seems to be a whole bunch of supplements that people swear by, making it somewhat difficult to try everything out.
Mark
Yes, Laura, how are things going? We all want to know!
Cheers,
Bev
:)
Hello. I am 46 year old lifetime sufferer of UC. I was living in the UK when I was diagnosed at the age of 23 or so, and tried various different drugs over my 11 years there, none of which really seemed to help (except Paxil which is an antidepressant and was prescribed by one GI I had – totally worked but who wants to stay on those all their life?!). Had a really fun time in a Leeds hospital one time too, having a sigmoidoscopy with nary even a muscle relaxant – seriously would not recommend that to anyone and I hope they have since discontinued that barbaric procedure. Have been in the US for 11 years now and have had much better treatment. Or maybe the treatments have just gotten better.
At the age of 41, after yet another attempt to quit smoking (had smoked since 12 but only 1-3 cigarettes a day) I had a severe flare-up. After my regular (and completely useless) GI gave me the equivalent of “take two aspirin and call me in the morning” even though it was so bad I couldn’t go to work for the first time in my UC life, someone got me in to see another GI who took me more seriously. I was even getting a swollen ankle which is a sign of additional inflammation in the body so first he had me checked for blood clots in my legs just to make sure it wasn’t that (it wasn’t). If you can believe it, he said the flare-up came from quitting smoking, as UC is one of the few diseases that are helped by smoking. Crazy, eh? He recommended I try nicotine patches (since obviously he didn’t want me to start smoking again) but they just gave me a headache as I wasn’t a heavy smoker. Additionally he put me on steroids for 6 months or so to get it under control (it worked). He then put me on 6-mp and Lialda. For the first time in my life my UC completely went away, and stayed away. I go for regular blood tests to make sure everything looks okay and so far so good. I suffered absolutely no noticeable side effects from 6-mp. He was also the first doctor to tell me that UC was an autoimmune disorder, after all those years.
After a couple of years I decided to wean myself off all meds and did so successfully. I was drug-free for maybe around a year until a trauma in life caused a flare-up and I had to go back on. I am already lowering my dosage and working towards getting off again as obviously you don’t want to be on that stuff forever if you can help it.
I do yoga 4x a week, eat extremely healthy, take several supplements, and try not to get stressed. UC is completely related to stress, and I believe people who internalise rather than deal with their emotions are often sufferers. This has certainly been my experience.
All in all I would say that if you are really suffering it wouldn’t hurt to try 6-mp. It totally worked for me and I was able to get off it eventually, and am confident I will again.
Cheers,
Colleen
Also – wanted to point out that I have been following Dr. Gundry’s Diet Evolution since 2010 with great success. He is working on a new book as his latest belief is that lectins are the cause of inflammatory diseases. There is a Facebook group for “Dr Gundry’s Diet Evolution” if you’re interested.
I should also point out that when I had the major trauma in my life I dropped everything for about a month – no supplements, no yoga, no nothing good for myself – just stress stress stress. That’ll teach me!