Ulcerative Colitis Tips


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Still Not Quite There Yet…

Introduction:

I am a female age 59 & have had Ulcerative Colitis since 1998.

My symptoms started the first time I tried to quit smoking. I was successful at quitting when I was 53 yrs old. I have had UC everywhere (at one time or another) left side right side, rectum, etc. I currently have proctitis. For just a little over a year I’ve been in this flare. When it started I had pain in abdomen, extreme urgengy, and blood. No diarrhea. I was able to get better with a suppository prescribed by my doctor, and get at a compounding pharmacy. I still have not achieved full remission but I am much better. My doctor also told me to smoke 3-5 cigarettes a day to get in remission. I tried it & even that did not work, and I really hated smoking again, so I stopped. My new Gastro Doctor wants me to try Imuran.

My Ulcerative Colitis Questions:

My questions are to the proctitis people, have any of you gone into remission? With what drug? I am thinking about the SCD diet, has that worked for anyone with proctitis? Has anyone with proctitis tried Imuran?

I really want to be able to take a vacation next year and I so want to be in remission. Thanks for any help & answers to my questions.

Ulcerative Colitis Medications:

At one time or another I have pretty much been on all the standard pills potions & enemas.
Currently on:
Apriso – 8 a day
Budesonide 2mg/ASA 500mg suppository – once a day, going to try twice a day

 

Submitted by Suzy OC in the Colitis Venting Area

 




female, imuran

5 Responses to Still Not Quite There Yet…

  1. Hopskotch October 31, 2011 at 4:15 pm #

    Hmm, AFAIK, proctitis is just colitis that stays near the rectum. I started with that (though it was apparently before they made a distinction between that and full colitis), and some years later it spread to pancolitis (all over.) I’ve always had an easier time controlling it near the rectum, since there’s less area to deal with and you can at least hit it with a suppository.

    Anyway, my control of that has been Asacol for maintenance + Canasa suppositories for flares. Canasa is 1000mg (they used to come in 500mg but I think those were discontinued.) Sounds like roughly what you’re taking but in possibly higher doses – so perhaps 2x/day on your suppositories will help. One strange note about this: Canasa usually give me the runs, so sometimes I can’t tell if they’re working! So if I’m using them, I try to take a day off here and there to assess things.

    There are also hydrocortisone suppositories which I’ve taken for hemorrhoids and fissures in the past, but I recently discovered they’re also prescribed for UC. I’ve never been prescribed them for UC, but planning to ask my own doc about them.

    Hope you feel better soon!

  2. cocorose October 31, 2011 at 10:44 pm #

    What about trying the nicotine patch instead of smoking? My Doctor put me on 7mg for 12 hours a day and I have noticed a HUGE improvement. Just a thought.

    I’ve tried Imuran but experienced terrible joint pains from it, to the point where I had difficulty walking. Apparently this is a rare side effect though.

    Besides the nicotine patch, I also take 4800 mg of Asacol, probiotics, omega-3 oil and a plethora of vitamins.

    Best of luck to you!

  3. Suzy November 1, 2011 at 4:57 pm #

    Thanks for all the replies. I did forget to list probiotic’s in my med list, I do take them twice a day, once in morning & before bed. They have helped significantly. I tried VSL3 but quit because at the time I was in the worst part of my flare they didn’t seem to work, maybe I didn’t give them a chance. I am using Trunature, I get at Costco. It has Lactobacillus acidphilus & Bifidobacterium (The bifido is the one recommended I think for UC)Has anyone heard of this? It’s so confusing, because my old Gastro Doc, told me none of that stuff works, special diet, probiotic’s etc. My new Doctor told me to take probiotics. And all agree smoking helps.
    At one time I was taking the same meds as you Hopskotch, Canasa & asacol, the canasa did not work for me, then I was put on cort enemas, they did not work and I had side effects.

    Cocorose, I asked about the patch or the gum, and this Doctor said no, I had to smoke cigarettes, because there are so many chemicals in cigarettes and they don’t know which one cures UC, so I had to smoke them. I’m really sick of doctors advice right now. The smoking instruction came from the Head Doctor of Gastroenterology at University of Chicago. All I know is at 59 yrs old I don’t need to start smoking again. I did not go back to him, but he did fix me up with those suppositories.

    Graham, what harm does bacteria strain overgrowth cause? I’m going to research this.
    Thanks again for your thoughts & feedback.

    Suzy O’Connor

  4. moxie November 1, 2011 at 5:20 pm #

    I was diagnosed with proctitus and went into remission twice with the SCD alone. I did flare after going off the SCD the first time about a year later. SCD worked very quickly the first time but took more time the 2nd time. I tweaked the diet a bit and then I seemed to improve. I now eat all foods on the SCD. Feeling 100% right now.

  5. Jimmy November 2, 2011 at 8:08 am #

    To Suzy,
    I have had UC since 2008, and my doctor prescribed prednisone, asacol 4800, and was very cautious about food ( back then there was no UC diet ) and have achieved full remission, however, since then I stopped alcohol, and spicy food. However, I had another flare 2 months ago,had an endoscopy, and this time it was only proctitis. some diarrhea, pain and blood, and feel the urge to rush to the toilet even if I drink water. This time my doctor prescribed predfoam 20, asacol foam 1g, and asacol tablets 4800, followed by asacol suppositories 1g. In addition dicycloverine hydrochloride which worked miracles in reducing the pain. I did not yet reach full remission, but the blood stopped,however, if I had spicy food, fruits , or red meat, the symptoms are back again. It is true that stress plays an important role, this recent flare came right after stressful time when my mother passed away. Interested to hear that smoking works, and will give it a try.

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