Hi! My name is Katya. I’m a 26 year old artist and dog lover living in the South East. I’ve had UC since I was 19. I’m allergic to most of the medications for this disease and right now feeling surgery more imminent than ever. Would love some female perspectives about surgery…
This is a past post about my allergies to Remicade, Humira, and Azathioprine from Dec 2011: https://ihaveuc.com/scary-remicade-experience/
Some more about me:
I make paintings and have dabbled in stand-up comedy. I have a very multi-cultural background, with family across the globe and have been lucky to travel to visit family since I was young. Dogs help me through tough times, and I have a soft spot for mangey mutts. Hiking with my dogs is the ultimate.
I’m currently having the worst flare up in at least 5 years, or maybe ever. BMs up to 25x a day, though it’s hard to keep track. Sorry for the graphic details, but my flare-up stools range from weird mucus and blood pellets to split pea soup looking mush to formed BMs that are soft and ochre colored, sometimes with mucus and blood. Sometimes there is just mucus in the toilet. All stools feel pretty urgent. I haven’t had a colonoscopy since January 2011, and at that time I had just proctitis.
What scares me right now is that I don’t have good insurance until next January, I don’t have a relationship with a doctor where I live, and my case is complicated because I am allergic to Remicade, Humira, and Azathioprine.
After turning 26 in May and losing awesome coverage from my folks, I got on my husband’s insurance, but it barely covers anything and the deductible is $3000! I had been doing so well for 2.5 years that I thought a few months on bad insurance wouldn’t be a big deal as I have been medication free for some time. Also I moved to the South East from NYC and haven’t seen a GI in over a year. I had been managing my UC for 2.5 years with the SCD diet with great success, and this flare up came out of left field. Actually, it started at my wedding this summer. My usual tricks to stop it in its tracks haven’t been working (SCD intro diet), so I started taking some left over Prednisone. I’ve been on 40mg for over a week and barely see any improvement, still running to the bathroom 6+ times when I first wake up and at least 10 – 20 times a day total. I also restarted Apriso, 8 pills a day, and am trying to use Mesalamine enemas but can’t hold them in.
There’s lightly less blood in the toilet, but the BMs are keeping me up at night. I’ve been eating early stage SCD foods for weeks now with little improvement. I have a new GI doctor’s appointment at Emory in 3 weeks, it was the soonest available when I called weeks ago. Till then, I’m doing all in my power to avoid the ER by staying really hydrated and sticking to soft, bland foods like chicken soup and some fish. I was hospitalized following my initial diagnostic colonoscopy 7 years ago, but otherwise have been lucky and haven’t had to go to the hospital.
I do feel guilty self-prescribing the prednisone, but I didn’t feel I had much of a choice. I’ve taken it so many times in the past that I feel confident about tapering it, controlling side effects, etc….
Any Female Perspectives on J-Pouch Surgery?
This is the first time in a long time that I have been really considering surgery. Seeing as I’m not responding to Prednisone and Apriso, I am allergic to biologic medications, and also allergic to Azathioprine (6MP), I don’t see many options. I’m willing to try Cyclosporine for a short period, but with my history of bizarre drug reactions, I am not interested in playing around with any new novelty medications.
When I first considered surgery in January 2011, after a terrifying Remicade drug reaction https://ihaveuc.com/scary-remicade-experience/, a really great IBD specialist at University of Miami gave me a real talking to about the risks. He stressed that the surgery is particularly complicated for women.
The doctor said that infertility is a real risk from the J-Pouch surgery.
Also, it can make intercourse painful because the anatomy down there shifts.
To top it all off, according to the doctor, some large percentage of J-Pouch patients still need medication for the rest of their lives because of Pouchitis.
I would really love to hear from some females that have had the surgery.
Did you have trouble becoming pregnant since having the surgery?
Did the surgery make intercourse painful?
These are embarrassing questions, but I know these issues would have a great impact on my quality of life. I’m recently married and would like to start a family in the next decade…
And to both men and women who have had completed surgery, do you have to take medications and/or deal with Pouchitis?
Does anyone have experience with Cyclosporine?
Living without medications and feeling great has been a gift the last few years, but the constant threat of a flare-up is something I could easily learn to live without! I think everyone with this disease is a survivor in so many ways. The symptoms of IBD are not pretty and are generally regarded as taboo, but we have to keep on keeping on. Our disease is often “invisible”, so people don’t even realize how we suffer running to the bathroom, dealing with scary medications, losing organs, losing sleep. I commend everyone with this disease that has learned to keep their chin high even through the worst flares!
And thank you to Adam for this site, which always cheers me up when bathroom horror has kept me isolated!
Currently taking: 40 mg Prednisone, Apriso 8 pills a day
Allergies: Remicade, Humira, Azathioprine (6MP). Allergy to Azathioprine was a short lived drug skin reaction, about a week. Allergy to Remicade and Humira was a brutal rash that persisted for well over a year after stopping the drugs.
Tried with few results: Asacol, Lialda, Cellcept
Helpful before a flare gets out of control: Canasa, Foam enemas, Mesalamine enemas, hydrocortisone enemas
Supplements/Lifestyle: Calcium + Vit D, L-Glutamine, Saccyrmces Bouillardi, Yunnan Bayou, Turmeric, dairy-free SCD diet
Other: I took a potent cocktail of Dapsone, SSKI and Prednisone for 2 years due to a skin reaction to Remicade. The SSKI caused thryoid problems, now I take Levothyroxine 75 mcg.
written by Katya
submitted in the colitis venting area