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I'm one of the people that was diagnosed with UC. 14 years ago I had my colon removed for the supposed cure only to have the pathologist say signs showed that I had Crohn's Disease. The surgeon was kind of pissed at me since he had already put a j-pouch in place for another surgery in six months for the reversal from my stoma. He went on to say that a j-pouch just wasn't done for a Crohn's patient at all, except maybe in France. I did know this guy from Adam. It was an emergency surgery. Fourteen years later I have been going to the VA for treatment for my anemia. I was treated with Humira, Remicade, and the 28th of April with something new. Anyway, I have been getting some bloating and told my gastro doc that I was starting to hit the Phillips and taking some Budesonide in the mornings of late. He asked if I was visibly bleeding and I told him I wasn't, but that I had black stools which was probably bleeding. Anyway, today I was bloated and now have passed a bunch of bloody stool BMs. Six months prior I told my specialist doctor I was really tired of wasting my time and theirs sticking Iron Sucrose in me every few months that just seemed to go right through me. That maybe we should do some surgery to cut out the ulcerated tissue that my most recent colonoscopy showed was worse than in 2009. I told him I didn't think this stuff would heal on its own.  He talked me out of surgery scaring me with the likelihood of me having to have my j-pouch redone and possibly having adhesions again, which was probably a worse hospital stay than my colectomy. He took me off the weekly Humira shots and back on Remidace, which I told him probably wouldn't help. He said it might heal things up and lets try this for six moths and then put you on the new stuff. So...I'm swigging the Phillips thinking what would my fellow j-pouchers do?

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According to my GI, there is more data out there indicating efficacy of Remicade over Humira. I had been on Humira at one time and told him I was willing to return to it, but he preferred to try Remicade. The next step is Entyvio, if Remicade does not work, or I have to stop it for side effects. But, Entyvio is not approved for arthritis, so I am unsure if it would be useful.

Letlive, in your case, there could be issues, since you are returning to Remicade, as opposed to first time use. Testing for antibodies in advance would be useful for dosing and additional meds, like methotrexate or Imuran.

I suppose you are swigging antacid due to upper GI involvement, which could be from small bowel involvement. It won't heal anything, but just treat symptoms.

Jan

Last edited by Jan Dollar

Thank you both for your responses. I'm sorry my post was so cryptic. I've been swigging on the Pepto-Bismal to relieve the bloating. The 28th of April I'm going to get my first infusion of Entyvio after six months on the Remicade and several years before on a two-week regiment on Humira, which became every week. I went to taking once a month injections, two shots at a time, with something, but it didn't work either. The doc talked about some pills coming our way in a couple of years if this doesn't do the job.

I finally called the VA gastro doc, he called me back ant told me that he knew I must be in bad shape since I never call. He said yeah keep taking the 9 mg. of the Budesonide, and take 30 mg. of the Prednisone for a week and then go onto a taper. Usually, he says a person would take one or the other, but in my case take 'em both and then stay on Budesonide when I'm done with the taper. I go down to the VA Friday (tomorrow) for my third in a series Iron Sucrose Infusion, so they'll do some CBC blood work to see where I'm at. I'll pick up a prescription for more Prednisone. Yesterday, after about 30 hours of bleeding it just stopped, so I hope I'm on the mend, but I'm still going on the meds. I did take a Xanax and 2 grams of Red Vein Borneo Kratom - perhaps it helped. 

I went to the gym today on my 30 mg. of Prednisone and I had to cool it since I wasn't getting tired doing stuff I normally don't do, and I certainly didn't want to overdo it and be sore as hell. I hope I sleep okay tonight, but I've got a ton of energy. I have bad memories 15 years ago before the j-pouch using this stuff and never sleeping. I have permanent bags under my eyes from those long nine months of high dose of prednisone, then taper, taper, taper and the bleeding would come back and back up to the higher dose and taper. At least I'm now retired Floridorian.  

Doing the taper off the Prednisone. I'm down to 20 mg. but my guts are killing me. Is it the Prednisone.? I eat before I take it. It's like my food is killing me. I go down to 10 mg. Thursday and then the following week I get my 2nd infusion of Entyvio. It was a surprise that the infusion only last a half hour. I'll stay on the Entocort for a good while afterwards. Still feel weird in the stomach or guts, but I'm not presently bleeding, so all is good on that front.

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