Ulcerative Colitis Tips


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Help with Ulcerative Colitis

Bio:

I’m a 42 year old male that has been dealing with UC since I was 15 years old.
I’m from Maine and has always lived in NE.

My Colitis Symptoms:

I having the bloody,mucus, loose,and 6-10 movements a day.

My Story:

I have been on prednisone since May 2011 (60mg). My doctor started to take me off of the prednisone about four months ago. I just had an appointment last week and he had to up my prednisone to 40mg, and my 6-mp from 100 to 150m. He told me if this does not help he would like me to try Humria, after that if that does not work try Remicade. I do not like the meds Im on now, because 6-mp has the same warnings of Humria,and Remicade. The warnings on all three of these drugs are really bad. I’m thinking of having surgery. That is just as concerning as the meds. Does anyone have thoughts about medications or surgery would help out alot.

Like I stated above. I have had Ulcerative Colitis since I was 15, and now 42. During this time I have never had more then 9 to 12 month of no flair ups. I have lived with this so long you would think the problems that comes with UC wouldn’t brother you after 27 years. I’m thinking of going to Maine medical in Portland, Maine or down to Boston, MA. Each of them are about one hour away from me. I think a second opinion might help me out. Has anyone been to either of these hospital? The hospital in Boston I would go to Mass General. I’m thinking of these hospitals because a mass general has one of the best programs in the country and Maine medical is pretty good also. If anyone has any thoughts I welcome them. Thank you for reading my post and also thanks for any thoughts in advance. In closing I hope you all out there in UC land are doing good. I’m hoping for some good feedback and more posts in the future. thank you all for your time.

Where I’d like to be in 1 year:

I would love to be off all medications and no surgery, but I know that’s not likely

My Colitis Medications:

So far prednisone has worked the best , but also has not really worked

written by Chuck

submitted in the colitis venting area




5 Responses to Help with Ulcerative Colitis

  1. Adam
    Adam July 29, 2012 at 8:26 am #

    Hey Chuck,

    Thanks for sharing your story. I’m very sorry you have been dealing with the UC symptoms for so long.

    One thing that definitely concerned me when I was reading your story is the amount of time you’ve been apparently taking high doses of prednisone. I’m no doctor, but I think you should definitely bring up with your treating physician some questions about what might be the long term consequences of a high steroid dose on your health. My uncle who lived up in Maine was also taking steroids for a very long time in his battle with Crohn’s Disease (which you know is quite similar to UC) and he often told me that he wished he had gotten off that particular medication do to some related issues which popped up later in life for him.

    So that’s just a suggestion.

    Also, I’d encourage you to read the “remicade survey” that we conducted here on ihaveuc. You might be surprised with the results, or maybe not, but either way the few minutes to read through what others had to say about their experiences with remicade. here’s the link to that:

    http://www.ihaveuc.com/remicade-infliximab-reviews-and-survey-for-ulcerative-colitis/

    Good luck with everything. Wishing you the best,

    -Adam

  2. OrdinaryWorldWhereRU July 29, 2012 at 1:12 pm #

    I concur with Adam in that it seems like a long time to be on pred given its side effects. My doc only used it one time and won’t use it again. For me, surgery is my last option. I am on Remicade. I didn’t take the survey but I have had no side effects from it so far and it has been a year now. It has helped tremendously. My doc chose Remi first since he said the studies shows it has a higher rate of success for UC patients than some of the others. If you have access to those terrific hospitals and can afford it, I say go for it. And, if you are willing, share your experiences there with this site. I am so sorry you have had to endure this for so long with little relief. You and everyone else are in my thoughts. It is my sincere hope that they find a cure.

  3. shelly in maine July 29, 2012 at 5:51 pm #

    Hey fellow Mainer,
    Wow, I agree on the prednisone…your doctor should always be trying to get you off that asap! Perhaps your first step is getting a new doctor? Not sure if you read my recent update/story…The Grimm Reaper UC…? I’m a longtime UC’er-30+ years diagnosed I’m 44…and most importantly MED. FREE for over a year and counting! I have a great longtime GI and a fantastic primary care doctor who is a D.O.-they treat the whole you!!
    People were always pushing me to travel to Leahy Clinic or MD. , Portland or wherever, (I’m up near the Bangor area) but honestly when your stuck in the bathroom you can’t even think of going elsewhere and how? Not to mention the medical protocal is always the same. Just my opinion. I do not regret most the meds. Except Humira and 6mp…which I had an allergy to being masked by the prednisone-as i started to taper the rash, etc got worse and worse and still have it permanent on my forehead from several years ago!
    Anyway, that’s where I would start. Read about SCD, gaps and paleo…diet is important I do not keep strict, but closer to when having more symptoms. Probiotics,probiotics, probiotics…good quality and omega 3’s! Keep a journal of foods, bm’s, etc to find triggers etc.
    Read the surveys and stories…I did not take the remicade or prednisone survey, but agree with most.
    Any questions just ask…
    Best and good health, Shelly-fellow maine-ah!:-)

  4. Bev July 30, 2012 at 5:06 pm #

    Yes…probiotics first!!

  5. Catherine July 31, 2012 at 2:39 pm #

    My daughter was on colozal, 6MP, Remicade, steriods. She was in a yearlong flare, and taking prednisone the whole time. Everytime she tried to taper down the flare would rage again. remicade was the last resort, and it didn’t work for her. She had a colectomy in January and jpouch surgery in May. She couldn’t be happier. I am so happy to have her off the scary medications. She is well, and takes NO medications.

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