Here’s the picture Paul Sent in!!! (thx Paul:)
I live near Boston, MA and am a male who just turned 60.
Happily married for 32 years with 3 great children:).
I work in high tech and do consider my working life to be pretty stressful, but with age comes wisdom and the ability to keep things in perspective, so I feel I manage the stress pretty well, but i am looking forward to retirement before too much longer.
I was diagnosed later in life, at about age 43 with UC
Something Interesting:
I have been pretty active as an athlete all of my life, a college soccer (I know, football!) player, who also played hockey and baseball back in the days when you didn’t have to concentrate on one sport in school. I was a runner for years, but now enjoy bicycling and yoga as my main training regimen, much easier on the joints. Golf is a hobby, but I am not very good at it, so I don’t take it too seriously. I also love to ski, and reading is a passion for me.
Symptoms Currently:
My UC is a long story, right now I have been battling a flare for almost 5 months which was caused by my trying to stop taking Imuran and stay in remission naturally. I am back on the Imuran and trying to control things with that and my diet, but it’s been frustratingly slow. I am having about 3 bloody diarrhea (mostly) BMs per day, but am able to continue working and exercising. I had shoulder surgery in August, and refused antibiotics due to a bad history with them, and the surgery has gone great, but I was not able to follow my exercise regimen during the recovery for 22 weeks and I think that has not helped my UC.
Paul’s Story:
Mine is a long story, so I will try to summarize as much as possible.
Diagnosed with a mild case of UC about 17 years ago. Was given Asacol enemas and my colitis exploded, landing me in the hospital on high dose prednisone and being fed via central line TCP. I spent a full month in the hospital, they could not stop the bleeding, but I have always been determined to not go the surgery route. We finally decided to feed me while weaning off 80 MG of prednisone and starting 100MG Imuran. This put me in remission within a month. I stayed on the Imuran for about a year, and not liking the side effects was able to return to a normal diet and stop the Imuran after a year.
I stayed in Remission for about 12 years after that!!!
Unfortunately, I was diagnosed with pneumonia about 4 years ago and took a heavy dose of antibiotics to cure it (not the greatest decision of my life) the Z-Pack and it cured the pneumonia, but landed me back in the hospital with UC and what also turned out to be C-Diff.
Vancomycin resolved the C-Diff, but I had to go back on the Imuran as it seemed that the C-Diff flared my UC.
The C-Diff also recurred on me, and I have had 2 fecal transplants which worked wonders for me. I think that was the primary reason i was able to stop flares, not the Imuran.
Since that time I have had flares off and on. I was feeling great on just Imuran, eating well and exercising, so I again tried to get off the Imuran as I am concerned about it’s side effects and as others have mentioned, taking something that suppresses my immune system. I believe that the Imuran causes me to have joint pain, mainly in my knees when i ski or bike. I also believe that having had to take prednisone in high doses was a contributing factor to the reasons why I had to have shoulder surgery this year.
I have been flaring for 5 months. I am pressing my GI doc for another fecal transplant, but it seems that these are only approved to be administered to resolve C-Diff. I would much prefer to have these done by a hospital than doing it myself. I am only taking Imuran right now, and still bleeding more than I would like. My GI says the bleeding is only a sign that inflammation is still there, but none of us like to see 5 months of bleeding! She has asked if I want to try low dose prednisone, I am hoping to NOT do that, but I am now considering trying a short course. I really do think that a transplat is my answer and go back to see her in 2 weeks. I am going to press for the transplant at that time.
Medications / Supplements…the rest of the story:
I’ve tried quite a lot of things. They tell me I have a sulfa allergy, so Asacol is not an option for me.
Imuran and fecal transplants seem to work best for me and I am very hopeful that the transplant research and microbiota research will help all of us in the near future.
I take Florastor to keep the C-Diff away and VSL-3, though I can’t tell you that either have helped a lot, but I also don’t think they hurt.
Prednisone has helped stop flares, but I hate it with a passion due to long term and side effects. I’ve spent a total of 59 days in the hospital on high does Prednisone, plus time on it outside the hospital, so I’d rather not take any more.
I make my own yogurt and I think it helps. I eat a smoothie every morning with my yogurt, strawberries, blueberries, a banana, L-Glutamine, spinach, ginger root and a small amount of fruit juice. I believe it does help my symptoms, and even if it doesn’t it really makes me feel good every day.
I have been reading up on low dose Naltrexone and am interested in what others think about that. I’m also interested in getting the IGG food allergy test and wondering if others think it is helpful, seems to me that it is.
Adam, I can’t thank you enough for putting this site together. I’ve been searching the internet for years and I find this by far the best site out there. Keep up the great work.
As I said, I’ve tried a lot of things. I believe that there are different things that work for different cases, unfortunately, but I am hopeful that I might be able to help anyone out there if I can.
I would also like to echo what others have said, don’t let UC control your life, take control of it and live your life!
written by Paul S
submitted in the colitis venting area
I live near Boston, Ma and am a male who just turned 60. Happily married for 32 years with 3 great children. I was diagnosed later in life, at about age 43 with UC.
Hi Paul!
I was diagnosed with UC in Oct 2014. Currently on Azathioprine for one year and have had a lot of success with it apart from a few mini flare ups.
I too am allergic to Sulfa and had a nasty reaction to rectal Mesalazine before Christmas.
I since tried Predfoam rectal meds and they worked a treat…is this something you have tried?
Laura
Laura,
It’s great that Azathioprine is working for you, it’s done the trick for me before so I believe I just need to get past the most recent flare. I have not heard of Predfoam, so thanks for the recommendation, I will discuss with my gastro who I see this week.
Paul
Had uc for 4years just bin put on azathioprine whats the best time to take it if I take it in the morning some days feel dizzy in aflare up but getting there slowly
Susan,
I had some of the same problems taking Imuran in the morning, so I switched to taking it in the evening and that did resolve the daytime problems. However, I was questioning the effectiveness of taking it all at once since my flare is healing so slowly. I take 200mg per day, so I recently started taking 150 in the evening and 50Mg in the morning with breakfast. The 50 in the morning seems very tolerable and my symptoms are getting better, but I am not sure I would credit he improvement on splitting the dose, it’s more on some diet improvements I have made, cutting out coffee altogether and cutting down on sugar. I asked my doctor about splitting the dose via email and she hasn’t replied yet, I will try to pass this on when I get an answer.
Good luck,
Paul
Thank you I am going to try 1 in the morning and two at night I just feel dizzy and spaced out also on prednisone down to 5 a day not sure which ones are affecting me more thank s
If you are allergic to sulfa,you cannot take mesalamine (sulfasalazine) but you can definitely take other aminosalicylates (eg balsalazide and many others) which have no sulfa and are as effective as mesalamine. You can try budesonide which is safer than prednisone but perhaps also less effective..Prednisolone enema also may be tried.
sulfasalazine has sulfa molecule while mesalamine,,balsalazide etc do not have sulfa molecule and were developed to remove sulfa molecule which does not have therapeutic effect and has multiple side effects.You are allergic to sulfa or salicylates?
Ravi,
Thanks for the info, I recently tried budesonide and it did nothing for me, so we stopped it after a month. I actually thought it made things a bit worse. I will check on the possibility of aminosalicylates. I know for sure that I am allergic to sulfa as that is what landed me in the hospital on my first go round with UC. We are not sure if it is just sulfa or salicylates so I need to be a bit careful there.
I have tried LDN but had no effect on me. Maybe I didn’t use it long enough or maybe my flare is too much for it. Taking Lialda and Entocort (budesonide) now. I’ve been in a flare for maybe 4 years, but never any blood. Refusing infusions due to side effects. Trying 50 billion probiotics at night, also Turmeric. My problem is mostly in the small intestine so I don’t want to take probiotics too much for fear of overgrowth as they are best for colon. My days are best when I take my meds earlier in the day. I feel better on non-working days. I am a software engineer. My mind loves the stress and multitasking but my body can’t handle it. Started seeing a chiropractor who also specializes in GI. I had no idea spinal issues were related to intestinal issues. I read daily for info on my disease. So much to learn and understand…too many variables to dissect each one separately…very frustrating…
Laura,
I tried budesonide and it did not help my flare, so discontinued it. I also take turmeric and I think that has been helpful. I take both VSL3 and Florastor, but it’s hard to say if they have had a positive effect, but they certainly haven’t hurt me. Being in software/high tech does add stress, but I think it’s helpful as you have to be a problem solver, and as you say, there is so much info out there I bet your software experience helps you to patiently sift through what works and doesn’t for you.
Good luck, I hope you can stop your flare.
Paul
Hi Paul, 6MP (similar to Imuran) is my miracle drug as well. I also get fatigue and joint pain with it, but it’s better than flaring. I’m working on my diet as well. One thing you might try instead of Pred is Uceris. It’s more topical than systemic so you don’t get as many of the bad side effects. It’s the only steroid I will take now – Pred rips up my stomach and Entocort does the same while also not working. Uceris is great though! Another thing that helped me is Curcumin supplements. Hope you can get some relief soon.
Shannon,
Thanks for the tip on Uceris, I will look into that as well with my gastro. I take curcumin daily and agree that really helps. I also make a smoothie every morning with yogurt that I make myself and fruit and veggies, I would highly recommend trying that as you work your diet and see what helps you. Mine is similar to what Adam has posted on the site, but what works for me is a combination of: homemade yogurt, spinach, blueberries, strawberries, banana, fruit juice (pomegranate, cranberry, orange) fresh ginger, L-Glutamine. I tried adding curcumin for a while, but it overpowered the flavor, so I now take the curcumin as a supplement.
Good luck,
Paul
Here is something interesting if you make your own yogurt and take curcumin:
http://suppversity.blogspot.hk/2016/02/want-to-home-brew-your-own-15x-more.html?m=1
A home hack to increase bioavailability.
Also there is a clinic in the UK that will take uc patients for transplants called taymount clinic outside london. Also doing it at home is really not that bad, check out the power of poop site.
Also predfoam has worked well for me too in the past.
How do you make your own yogurt? I was diagnosed about a year and a half ago with UC and have only been flare free for one 6 month period. I usually flare each month, but Mesalemine enemas heal it within a couple days, in addition to my daily Lialda, but this last flare has been going strong for over 9 weeks now. We tried 60 days of Uceris but didn’t really see a change. Now I’m on Flagyl, an antibiotic, to see if that helps. I eat clean, drink a gallon of water a day, and work out, plus I’ve been gluten free for 3 years. I’ve been bleeding 3-5 times a day for the past 9 weeks and it’s worrying me…
Andy,
I read the link, maybe you can help me translate it a bit, as I certainly can’t centrifuge my yogurt, but I believe they are saying that if you make your yogurt with buttermilk (or maybe just add some buttermilk to regular milk?) and then add curcumin to it, you will get a much more impactful way of absorbing the curcumin? Is this how you read it?
Also, thanks for the reference on the taymount clinic, but I am in the US on the east coast.
Candi,
Making your own yogurt is simple and has the added benefit of no added sugar and being much more cost effective. You can check the SCD diet for specifics, but it’s really very simple.
Buy a yogurt maker, I have a yogourmet that I bought on Amazon as I couldn’t find one in a store. Also buy the culture from Yogourmet, also available on Amazon or at most health food stores.
The yogurt maker comes with instructions and a thermometer for boiling and cooling the yogurt, but all you need to do is bring the milk to 80 degrees F, just to the boiling point. Then you cool the mixture to 40 degrees, I just immerse the pan in cold water in my sink after heating. You then stir the culture in with the cooled milk/yogurt, and place it in the yougurt maker for 24 hours. After the 24 hours you just need to place it in the refrigerator and after 8 hours you have some tart, delicious yogurt.
Good luck, I was never much of a yogurt lover, but I am now hooked on the homemade stuff.
Paul
Paul,
ive been in remission now for 11 months on the back of a constant 18 month flare. I had left sided
UC all the way inside my colon anx bowel
I managed remission through FMT only. I was never on any medication prior to transplant as i believed the drugs made me sicker.
It is groce to do FMT for sure but its free and if you could be in remission why wait.
use your partners poop and get well again
up
Jay,
Thanks for sharing your experience. I have an FMT scheduled for this Thursday and am fortunate that my gastro will do this for me by way of colonoscopy in the hospital using their donor bank. I’ve had this done twice before, both times after being diagnosed with Cdiff and it worked both times. This time around I have had 2 negative tests for Cdiff, but it feels about the same to me. Both times it took a month or so to get completely back into balance, so hoping it works for me this time.
Imuran has seemed to work for me in the past, though I have been taking it for 6 months since this flare started and it hasn’t been able to bring the flare under control by itself. Part of this is probably because I refuse to take any more prednisone unless I am desperate, and this flare has not pushed me to desperation just yet.
I am questioning the effectiveness of the Imuran and my doctor is suggesting I move to Remicade, partially because she has said that recent studies suggest that the incidence of a nasty form of lymphoma as a side effect of Imuran may be higher than previously thought – has anyone else heard this?
I’ve been doing research on Remicade and don’t like what I am reading from other patients in regard to side effects. Thanks again to Adam and the people who contribute to this site, it was the best source I found to hear from patients who have tried Remicade!
So, my current thought is that I will do the FMT and see how I progress for 30 days or so. If the FMT is the assist the Imuran needs I may stay with Imuran, as I know that my body tolerates that well and I don’t know how I will react to Remicade.
I welcome any other comments about Imuran/Remicade while I try to decide. When I was first diagnosed, about 15 years ago, I was on Imuran for about a year, and was able to taper off of it, and then went about 12 years in full remission, so I am hopeful that if this works, I could think about tapering in a year or so and getting off all drugs. I am also going to a nutritionist next week to try and identify food triggers.
I am concerned about 2 additional things, one being that having had CDiff recur on me twice, that my UC may be worse than it was before, so remission will be harder to attain, and also I have heard that Imuran’s effectiveness lessens the longer you are on it, and that it may not work for me anymore.
Jay, Thanks again for sharing and I hope you can stay drug free and in remission!
Yes, hello Paul, Richard here from England. Very informative reading through your thread, so thank you.
Was diagnosed about 15 years ago age 35 but only had colonoscopy a few months back. Turns out I have Crohn’s Colitis or Pancolitis. Have suffered from really chronic arthropathy.
Tried a million things over the years – you name it! Managing pretty well at present with 10mg Pred (GR), mesalazine, celebrex, calcium supplement & high quality probiotic. Good quality of life.
I am extremely tolerant of steroids (no side effects apart from feeling of well being mostly). I am however worried about bone weakening & glaucoma
My consultant is desperate to get me onto Imuran, but reading your experience and many others (quite a few on this site) it just seems so toxic & risky with unpleasant and health threatening side effects.
Any thoughts?
Hope you improve soon and thanks for your positive attitude.
Richard,
I would tell you that Imuran worked well for me for a long time. When I was first diagnosed and had to be hospitalized for 29 days, I was weaned off prednisone and on to Imuran and I was able to achieve total remission for about 12 years. I have never liked the thought behind Imuran, that I am tinkering with my immune system, so 2 years into that remission I was able to taper off Imuran and I was fine for the next 10 years with no drugs at all. I went back on Imuran after my bouts with C-Diff that caused colitis flares, and it again worked for me, but both recent times were after fecal transplants, so I wasn’t sure if it was one or the other or the combination.
The doctors are split 50/50 on whether my shoulder surgery caused my most recent flare, or whether trying to again taper off Imuran caused the flare, but either way I have been in this flare for 7 months now, and though it is a livable flare that I feel is healing very, very slowly, the Imuran does not seem to be as effective for me as it once was.
My doctor is pushing me towards remicade, but I feel like that is a last resort before surgery and I still feel that I can resolve this with diet and perseverance. I’m just not sure how long I should let a flare go, though I have4 read people’s experiences on this website where they flared for a year and a half.
I also want to give my nutritionist a chance to resolve this. I just started seeing him a week ago and he believes he can stop the bleeding in 2 weeks! We’ll see, my body can be stubborn.
As an aside, when I went to see him I was feeling terribly fatigued and he told me it was because I was taking folic acid without B-12. My gastro has had me on folic acid whenever I am on Imuran. The nutritionist gave me the B-12 and my fatigue improved in 48 hours. Great, that the nutritionist did that, but very concerning that the gastro didn’t know that that was my issue.
I wouldn’t be afraid of imuran, and I have always felt like it was the lesser of 2 evils vs. prednisone. I have taken a lot of prednisone and I do believe it can have a very negative long term effect, so I try to avoid it all costs.
Good luck with your decision.
Thanks for your reply Paul, good tip re folic acid & B-12. I hope that you are winning the battle against the bleeding.
I am 84 years and diagnosed with U.C, in my early 50’s. After many flares, many meds, treatments asacol, etc and much too much prednisone (which has caused continuing issues) I began taking Imuran, 150 daily, and it worked. I have been on Imuran for over 10 years. My only flare was when I tried to reduce to 100 per day. After 4 months flare was controlled, back up to 150 of course. During 2022 I self dropped to 125, no flare but other increasing joint arthritis issues. I remain on 125, took all Covid vaccines and am currently seeing rheumatologist and neurosurgeon for spinal issues – caused by prednisone, imuran, AGE, genetics, who knows.
Thankful for Imuran and staying with 125 daily!