Advice needed, long read.

Than you before hand for reading this. I could use advice from people who have suffered from bowel disease.

I am a 49 y/o Male. Eight years ago I had my first UC flare when I stopped smoking. For some reason smoking had kept my UC in check. After a few weeks in the hospital and countless drugs I was released and started on remicaide. I got a little better but developed an allergic reaction to remicaide and a liver toxicity to 6MP. Nothing would stop the bleeding. My GI doc sat me down and said "it would be unethical to tell you to start smoking again, but this is not a smokers disease" I started smoking again and within three weeks all the bleeding stopped. I was also taking Lialda.

Fast forward eight years. I am an endurance runner. Running 40-50 miles a week and wanted to get faster so I said "hey lets stop smoking and get faster. I stopped smoking and 6 months later I started to have issues. First the colitis came, then the blood. Took about eight months for me to get to full blown UC again.I went to the doctor and got started on prednisone. 40mg a day seemed to keep the blood to a minimum and I continued running. The bleeding got worse and on October 10th I did my research and found a great colorectal surgeon. I went in to the hospital October 10th to have my colon removed.

They had me on 180 MG IV steroids for a week while they did another scope and made sure it was really UC and not chrons. o_0. Silly GI doc. GI doc that was on rotation for that week was new to the practice and one of those drag your feet unsure of themselves physician. Everything good to go and Had my colon removed on October 27th. Two days to recover in the hospital and I was home that Friday. Two weeks later I ran a 5k in 32 minutes. I put that in there because I recovered really well. A month after surgery and I run again without any pain and am learning all sorts of this about my ileostomy and how to work with it when it comes to exercise and sweating.

The problem.

They left 8" of my rectum in just in case I wanted the take down, which I told them I would never have because my rectum was diseased. Why wold I want to keep it in. I understand from a medical point of view that they want you healthy when you make that call because of the risks involved with that surgery. Bottom line is that i am cool with the bag. I am ok with the 2% chance of impotency if you get your rectum out, and not ok with the 10% chance of rectal cancer if I have a diseased rectum.

The rectum has to come out.

Because I do not have enough leave saved up and because my company was just bought out I do not qualify for FMLA until March I have to wait at least until March until get get the rectum removed. I work for an outpatient radiology practice as a chief nuclear medicine tech. Been with the company for 13 years and we were bought out by a large hospital.

Here is the decision I have to make.

I am bleeding. I did not know 8" of rectum could produce so much blood. I produce about 8 bowel movements a day and at about 4pm they start to get really productive with lots of blood and mucus. Cortifoam gives me about 2 hours of relief and steroids enemas keep me cool for 5 hours so I can sleep. I have to stop the bleeding until i can get surgery, or keep it to a minimum. I am going to start back up to 40mg of prednisone today.

What keeps my bleeding down? 40mg of steroids a day and cortifoam when needed. I also have noticed that teh volume is reduced when I take 5mg percocet. Percocet can cause constipation because in some people it reduces or stops the production of gastric mucosa. I am one of this people. I can take a percocet and not have a bowel movement for 8 hours. Go figure. It is kind of funny when you think about it.

What would you do for the next 5 months?

40 mg of steroids a day to keep the bowel movements down to 4-6 a day?

40mg of steroids a day with 1-2 percocpts to almost eliminate them?

open the discussion with my gi doc about biologics for 5 months? I am open to humaria but not entyvio.

Long term steroid use or long term narcotic use.

I have lab work today with my FU on Monday.

Thank you so much for reading. And thank you more for giving me your honest opinion. I am in an "ok" mental state as I go through this. Part pissed off and part depressed.

blueglass said...
Zaneluke -- what a drag. So sorry. Crazy that you have to wait for surgery all this time.

I'm wondering about a nicotine patch. That is in fact a treatment for UC, and your trajectory w/smoking is not uncommon. Just seems like 5 months of nicotine would be less dangerous for you than 5 months of steroids or narcotics. I don't know if that's enough to stop bleeding or not.

Thank you for the response. I have been vaping for about 5 weeks. I am doing the 18mg juice and it really does not seem to do the trick, but I do enjoy it. No medical MJ here because of my job in health care.

What about Imuran? Before I went from a temp to a permanent ileo I was on a combination of Imuran and Cipro to help with the rectal issues. I did not have extensive bleeding but did have varying degrees of stuff (for lack of a better word)/bowel movements. The combination worked for quite a while and I would only have a bowel movement 1 to 3 times per week (versus anytime without control).

Imuran does require blood tests and I stayed away from sick people...but it was better than the alternative. Not sure if you see a lot a patients with your position...that would have to be considered if it's a possibility.

Even though I have Crohn's my biggest flare (that lasted about 5 years with varying degrees of intensity/drugs/surgery) started within a month after I quit smoking....and I am still glad I quit