It's been a really long time since I posted. I really just need to vent. Sorry for the Rant.

I have been on this UC/Crohn's road for 16 years . I currently have been told that my UC is really Crohn's. No biopsy has ever proven Crohn's. I have had my Colon removed and a J-pouch which currently has multiple fistulas.I have had 6 major surgeries (3 stage colectomy,  3 stage pouch redo), as well as 4 seton placements, 3 abscess drains, blood clot in my liver's portal vein.I also have been told I have Hasimoto's and Mixed connective tissues disease as well as Raynauds. I am allergic to Mesalimine(5-ASA Drug have this ingredient),I've tried Remicade - which I now have antibodies against. Rituxan - Which did'nt work.  6mp which gave me pancreatitis. Enytivio - which I pretty sure a have antibodies against (I felt progressively worse after each infusion),Now I am on Cimzia. I don't have many options left except for surgery. I really don't want to have another surgery to remove my pouch - and I am not even sure if that will fix the problem. The last time I had a bag it was as problematic - I had leakage issues, skin issues, and still had pain. I am not sure what to do....I am tired of this awful road, and tired of the doctors that don't seem to care.I have had so many issues dealing with the GI doc's now I'm to the point I don't trust any of them.

I don't know what the next step is or what I should do at this point. I am almost out of options. I don't know if there is a solution to all my issues. I am just hanging in there.

Thanks for Listening,

Carolyn

 

 

 

 

 

Last edited by Croachpa
Original Post

Sorry you seem to have been dealt a terrible hand. I haven't had all the surgery you have had, but I understand the biologic merry-go-round. I also have not had the side effects, and I do consider myself lucky for that. 

My arthritis responded reasonably well to Cimzia, but pouchitis persisted. There's also Simponi and Entyvio before you throw in the towel and talk about ileostomy. But, if you have to go there, understand that an end ileostomy is much easier maintenance-wise, as compared to a loop ileostomy. We have quite a few members in that category and are doing well.

As for uncaring docs go, they don't hand out personality in med school. It is an inate ability. More than likely, they care more than you know. Believe it or not, they get frustrated too when their best ideas don't work. They feel like a failure. So, for self presrrvation, they practice detachment and aloofness. The net result is sort of a cool demeanor that seems uncaring. If you find a doc who is both a skilled practitioner and someone you can build a rapport with, you have found GOLD!

Jan

 

Carolyn, 

i have similar issues with reaction to medicines. I have trouble  preventing inflammation. I'm going into a clinical trial for Alicaforsen on 8/3. I need something for pouchitis. This is the only enema that is designed specifically for pouchitis . Also I have spent a lot of time working with ND's on my nutrition & supplements. I'm hoping eastern & western protocols keep me from the bowl. A month ago my small intestine perforated & I had 18 cm removed. I thought I had crohns but labs came back negative twice. I definitely think what we eat & drink control the pouch despite what surgeons say. My inflammation was so bad it traveled into my ankles & knees & was on crutches for 2 months. As soon as infected intestine was removed all inflammation left my lower extremities. The pouch worked great for about a week at home after surgery & now I'm back to 10-12 bm a day. I can't live on antibiotics so I'm trying everything else. But I will admit it is hard to be disaplined with food ,beverages & supplements. 

Kim

Carolyn ,

forgot yo mention , allergic to remicade & humeria. Canassa never helped. Had the worst year of my life with stoma. Allergic to adhesive on bags, leaked all the time, and I suffered from burning rashes. So I feel your pain about reversal it's not an option for me. I'm willing to try everything . 

Kim

Hi Kim,

Very sorry to hear your in the same boat. I would not wish this on my worst enemy.

Keep me posted about the Alicaforsen. Best wishes for the trial to work for you.

Take care of yourself and try to stay well.

Carolyn

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