Feeling lost

[LeyCrohn]

Long story short I've had crohns for 9 years now. Flared on and off first three years (was in middle school then high school). 6mp put me into remission, my surgeon hdd me come off it four years ago (year 2 of remission). I'm 22 now and have been flaring over a year now. Have had to delay my senior year of college due to this episode. Out of work since August when I was put on remicade in hospital. Worked part time in November before ending up in ER with blockage and had 1 and a 1/2 feet of ileum/large intestine removed first week of December. A month later 4 day hospitalization. A week after hospitalized 8 days for abscess. Pain is finally starting to subside some but it seems like I get a decent few days then a bad week back and forth. Biggest concern is diahrrhea since surgery. 6 to 10 times a day. Also nausea daily and heart burn when lying down and fatigued of course. I really want to get back to work and living my life. I feel like a bum sitting around my parents house. The diahrrhea just won't go away. If it did I could handle all the other stuff. GI had me try questran and it worked the first day then hasn't since. Been taking it almost three weeks now two packets a day. Also gives insane embarrassing gas. Prior to this surgeon had me try immodium up to 3 times a day, it did nothing. I fear that I will have diahrrhea forever like this due to the surgery, but I can't give up hope yet that I can get into remission like I was before with pain being the only symptom. Any suggestions??? Have small bowel follow through in a week. On highest dose of remicade every six weeks, next infusion is in three days but to be honest I don't think remicade has ever worked. Also I had blood work taken and it came back normal??? There's no way I don't have some sort of inflammation going on with all these symptoms. It's been a long year. P.S. sorry for poor structure typing this on my phone and can't figure out how to start new paragraphs.

 

[LindaS]

I'm sorry you're going through all this.

I must have missed what type of surgery you had. I've had two bowel resections, and while I have looser stools than a "regular" person, I don't have debilitating diarrhea when I'm in remission. If the remicade isn't working, your doctor should try something else. Could you go back on the 6MP? I'm not sure why your doctor took you off it in the first place without any other maintenance medication.

Can you get a second opinion from a different doctor?

 

[SDS]

I have had Crohn's since 1982 - thankfully no surgeries. I have had issues with diahrrhea for the past 4 months - my doctor got me to try Olestyr - Cholestyramine for Oral Supsensen USP. It is a powder and dosn't taste great but doable. Apparently this helps with the absorbtion in the bowel. It does seam to work for me - at least it is better. It may be worth looking into.

 

[LeyCrohn]

LindaS - In 2008 I had surgery to remove an anal fissure/fistula. Then just four months ago at the beginning of December I had a resection spanning from the ileum as well as some of the large intestine, removing the ileo valve I think it's called? In total the surgery removed 1 and 1/2 feet of intestine. Surgeon took me off 6mp years ago because my parents and I wanted to try the no medication route since I was doing fine and because we read that 6mp is one of the more toxic of the immunosuppressant agents. I'd like to stay away from it if I can as it made me tired all the time. Have very good GI and surgeons here in Nashville, but might be consulting with a doctor up in Boston if things don't get better soon.

SDS - Yeah Questran is also a brand name of Cholestyramine, which I actually have the generic, label reading: Cholestyramine Packet. It's the yellow powder tastes kinda like orange juice but gritty. My GI thought I might have a bile salt issue from the surgery which is why he prescribed it to me. The first day I took it I had 1 solid bowel movement the entire day which was great. Then ever since then back to D everyday.

I try mentioning Humira to my GI and he just kinda ignores it? But I haven't really pressed him about it. I've been on Remicade almost 9 months straight with the exception of December when I had the surgery. Could it need more time to start working?

Thanks for the replies

 

[LindaS]

Your resection sounds a lot like my first one. Looser stool is normal after that kind of surgery, but it shouldn't be debilitating.

If I recall correctly, Remicade should start working pretty quickly. It worked for me for a few months, then stopped. Humira never worked for me. I take Mercaptopurine, which is 6MP. I get regular blood tests to check for side effects. For me that is the only thing that works over time.

 

[LeyCrohn]

How long did you have D after your first resection? The thing that is confusing is that the pain is much better than before the surgery, but I have all the other symptoms. My stool smells very foul and is yellowish. My gas is also very foul. They checked me for c-diff twice but neither showed I had it. It's hard for me to tell if this is just post surgery stuff or inflammation. The surgery was done laparoscopically and it's already been four months. Guess the small bowel series will show what's going on next week. Maybe I will go back to 6mp.

 

[LindaS]

Have you been checked for Small Intestine Bacteria Overgrowth? That can happen when the illeosecal valve is removed. SIBO causes diarrhea, gas, bloating and fatigue.

 

[LeyCrohn]

Not that I know of thanks I'll definitely ask my doctor about that. It would make sense