No more colitis, know living with severe crohns.
Mon, June 30, 2008 5:10 PM
Hi,
Well it all started back in 1988. I was 17 years old. Well 10 plus years after having ulcerative colitis, I was starting to have alot more problems. Lots of bowel movements, pain, cramping, and all the crap that all goes with it. I ended up getting my whole large intestine removed, in 1999. And i ended up with 12 surgerys from then to 2000 or alittle in 2001. I was very ill. I was only 80 pounds. I had a fisthula in my pouch that they made. I had stool leaking inside me for over a year, before they finally gave upp on trying to find the hole in my pouch. I ended up going to Madison, Wi. Hospital. Where a wonderful surgern and professer of surgery, took over. I was on tpn, there and at home for 6 months. He found the hole. Stiched it up. A week later got really sick again, with obstructions, and the fishtula, came back. So i then had to get the pouch removed. And know have a illestomy for life. Not long after the pounch was removed they sent it away. Its show it had crohns. So pretty much after that, i started have more systems of crohns. And that was back in 2001-2002. I have sence then, been fighting lots of bleeding in my small intestine. Every 3 months at least i need a iron infushion at the blood doc.I can not get this to com down. Im on 6-mo, Humira every week. And pain meds. Live with alot of lower back Pain. And mid- pain. I have to be very careful with the foods i eat. A lot of foods that are soft, and easy to digest. But i still keep bleeding. Last year i had another surgery, in madison. Its my 13. I had a really bad stricter, and had a couple more inches of my small intestine removed. Im worried if i keep bleeding the same thing is going to keep happening.
Joined Jun 29, 2008
Mon, July 14, 2008 9:33 PM
Reply posted for annapolisfox.
Hi
I was on Remicade before, I was on it in 2002- 2007. And i still had bleeding, and last year ended up with a really bad stricher. Which they to remove more small intestine. I am on humira shot once a week. I take 100mg of 6- mp. (mercaptatoprine). They do not want to give me pills, for crohns, because of my small intestine. Theres not enough there for the pills to stay in me long enough. My doc, is not sure to putting me back on remicade, because of the side effects after a person stops it, and goes back on it. Im getting a second opinion this weds. Thank you for your output. cindy
Joined Jun 29, 2008
Mon, July 14, 2008 2:33 PM
Reply posted for Cindylou.
You have to be on Remicade, how they haven't suggested this is malpractice. It specializes in stopping fistulas. I was on your track when I started it 10 years ago and haven't had a fistula since.
Joined Jun 19, 2008
Tue, July 01, 2008 12:03 PM
Reply posted for Cindylou.
Good afternoon,
I have had Crohns now for 33 years, Bleeding is not something you should not mess with, I would call your doctor asap and find out what else is going on. Also have you gotten a second opinion?. This is something that I would think about doing. Also there are plenty of other meds out there like 6mp, pentasa, entocort etc. Please get yourself checked out. and let us know how you are doing, be well and you are in my prayers.
Littlestar
Joined Jul 26, 2008
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