Question regarding living with Ulcerative Colitis and HIV?

[Delby]

Hi everyone,

Its been a while since i last posted. Had a lot going on re my health. I've been really struggling with my Ulcerative Colitis. Funnily enough, i seem to be having more day to day issues with my UC than HIV. I was diagnosed as having Pan-Ulcerative Coliits, the worst form of it as it extends throughout the whole colon. This was about 2 yrs ago. Anyway, since then i have been on Asacol 3 x per day and have just finished a high dose ,12 week course of Steriods (Prednisolone). Unfortunately the steriods didn't work and i am still suffering from daily diarrhea and urgent bowel movements. It is making my life a misery as it really effects the quality of living. I've had constant diarrhea from my UC for over 2 yrs now and its taking its toll on me more mentally than anything else.

Anyway, my question is, the Dr has suggested that since i was a poor responder to the steriods that the next line of therapy is Azathiopine. Now Azathiopine (also known as Azasan and Imuran) is an immunosuppressant. I am obviously very reluctant to go on them due to the fact that they are immunosuppressants. However, i am running out of options as the next port of call is surgery to remove my colon and perform a colostomy. Not pleasant to defecate in a bag attached to your abdomen and also a very serious surgery.

Has anyone got any experience about using Azathiopine or any advice?

Really feeling dispirited since my colonoscopy yesterday as this is a really 'shitty' way to live at the moment.

Thanking anyone in advance.

D 

[Ann]

Hi Delby,

I'm sorry, but I don't know anything about UC. I DO know about chronic diarrhea though, and believe me, I feel your pain. They've decided that I've got hiv related chronic diarrhea and the only thing that works for me to keep it under control (and allow me to leave the house!) is daily dihydrocodeine. I hate having to take it, but it does work. I have to be careful to take regular breaks so my tolerance level doesn't go up. I can't take Imodium, it makes me permanently nauseous.

I don't know if codeine would work for you, but it might be something to discuss with your doctor.

Hang in there. What you're going through sounds terrible and hopefully this new drug will work wonders for you.

Hugs,
Ann

[minismom]

I was diagnosed with UC when I was 18.  I was quickly re-diagnosed with Toxic Collitus then colon cancer.  I had an illeostomy done just after I graduated from highschool.  I, too, was on high doses of Prednisone (6 pills 2x/day for 3mths, then IV prednisone for 2mths, back to oral for a 2mth walk-down)  I hated every minute of it. They didn't do much in way of helping. All they did was make me jumpy and wanted to eat everything in sight.  Unfortunately, I was NPO and out of luck. I totally feel your pain and frustration.

Has anyone spoken to you about switching to a low-residue diet?  I found that helped a bit and gave my poor system a rest.  Also, when was your last scope and biopsy?  I had them every month for 18mths even after my surgery .  If it's been a while, you may want to speak to your gastrointerologist about having one done.  And, have you been tested for Crohn's Disease?  This can also effect the system, but is found in the small intestine (I'm pretty sure).

I hope you find answers and relief soon.  UC can be very debilitating.  I wish you health and peace.

Mum

[tommy246]

My wife has it and just been in hospital 3 times in 18 months each time for 3 or 4 weeks. She was on steroids and in the end they took her spleen out due to her destroying her red blood cells and  since then things have picked up 18 months clear.She eats a healthy mediterenean diet ,only the odd glass of wine ,loads of natural bio yogurt takes two immurel tablets daily and 6 clavesal she is doing well with no real side effects.I am convinced stress brings on the attacks she also says time of year effects her usually going from spring to summer.i forgot to say she is hiv neg.