Jeff's Story

I'm a 26 yr old male, I was diagnosed with crohns at the age of 19. In 1994, I was a very healthy child with no problems or eating problems.

Then I would have to say around the age of 18, I started getting sick. It started with diarrhea, then intense pain in my hips. My doc thought I was getting arthritis so he put me on Relafin and Naprosin. Big mistake! I think that stuff caused me a lot of damage. I was on that stuff for over 8 months and got worse and worse.

Finally, I had a Catscan and it revealed a massive abcess and my appendix ruptured. So they rushed me to emergency surgery and removed the appendix and abcess and did a resection, about two feet of small bowel. Also, before the surgery I had a fistula too. Then in the summer of '94 I felt better and recovered into full remission. I gained my weight back and was eating anything. The weird thing is when I'm fine it feels like I don't have any symptoms at all and no foods bother me.

Then I was fine for 5 years with occasional joint pain. I exercise so that helps. Then in spring of '99, it flared up again. I had no health insurance at the time because of this temp job I took after getting out of school and I thought I would never get sick, but bam it hit me hard. The pain was chronic and my abdomen and legs were so sore I could barely walk. Then one morning I woke up and a fistula had bored its way through my gut and I woke in horror. At that point I went to the Mass General in Boston, which is a very good hospital, where they did numerous tests and I got admitted and they cut me open a little more to help the fistula drain and then put me on prednisone and antibiotics. I was in for about 14 days then released and the fistula closed up and I was better again.

Then a month later the fistula came back, and at that time my surgeon wanted to do another resection, but my GI doc wanted to give me Remicade, so he played with my mind and got me all psyched for it. I took two rounds and it did nothing, it actually made me worse.

My doc was an a**hole, an extreme a**hole! He ignored my symptoms and never gave me any catscans or nothing. For two months I battled him and he just said it was side effects from prednisone and not to worry, it will pass. BULLS**T! I got so sick I almost died. In fact on August 16 1999, I woke up one morning with what I thought was a gas pain so I rolled on the floor to see if it would burst and then the pain shot to my chest and I thought I was having a heart attack. I rushed back to the emergency room and they found I was severely dehydrated, had lost so much weight and was hangin by a thread. I had a major abcess and my colon was f***ed. Again, up to emergency surgery. They had to put an NG tube down my nose prior to surgery to pump bile out. DAMN, that was the worse thing ever that I went through - I had it done while I was awake, mind you. Then to my surprise, I awoke with an ileostomy. I was in horror. I had no idea what it was and though it was just a temporary thing, but later found out exactly and I was pissed, so pissed I wanted to kill my doc...because that could have been avoided if he responded sooner with tests and that resection. I was so depressed I didn't want to live.

But as time went on I talked to some guys from the Ostomy Association and they showed me it isn't so bad and the nurses there were great. So here I am, 25 and an ostomy... but at first it was only temporary as they only removed 9 inches of colon and about 8 inches of small intestine. So there I was getting better again and was fine till this past spring in 2000 I got pains again, and again this doc f***ed around and did no tests till the pain got worse in June and finally he gave me another CT scan and it showed I had massive strictures in my colon and that it would have to be resected. So at first my GI doc was like only about six inches in my sigmoid, then my surgeon was like mostly the whole thing. Also there was this massive abcess brewing in there too, but my quack doc disagreed with the radiologist and said it was my colon. So I had the surgery and they left my rectum in and about a foot and a half of colon... then they sent me home. But little did they know they didn't do anything about the abcess so two weeks later I got deathly ill and got majorly dehydrated, so back again I went, and they drained the abcess and put on IV antibiotics. Luckily it was not a fistula or connected to my bowel, so after they did that I was fine, and they left a catheter in my stomach to drain any remaining fluid since I had such a large pocket of fluid. I still have it in as I write this and hopefully will get it removed next week. I have been going for X-Rays every two weeks to follow its progress. It's healing so that's good. I am much better though and have my appetite back and gained some good weight back, and have started exercising again, and met this beautiful compassionate excellent woman who knows about everything and is supportive and ok with it.

But I'm gonna sue that doc and I might just have to have this ostomy forever. They might be able to reverse it but after research I found that, without your colon, the food will not digest and my rectum will be destroyed, so as it stands now I function well, and my output is firming up since I take two tablespoons of Immodium every morning and it helps keep my stool firm, and I eat lots of rice and fish, pasta, drink Ensure, take zinc, folic acid, B-complex, Ginseng, and occasionally Flax Seed oil. I am doing good and hope I go into remission for a long time.

Just some advice, if you have an a**hole doc fire his a**, don't be intimidated by them, they are there to serve us. Ask many questions and force them to do tests. If they give you s**t then tell them to f*** off. Basically, you're the boss and don't take any bulls**t. Those overpaid sons of bitches are worthless at times but then again the surgeon I had saved my life, so its a draw. I fired that Doc and have a much better one, a younger more compassionate Doc who is the leading guy in the study of Crohns and is better than that other a**hole.

Well, Peace to all you Crohnnies and keep your heads up and never give up. I also found that smoking Marijuana helps too, helps relax and gives you the munchies and found it is an anti-inflammatory in nature so its good for crohns and I know other people who have crohns who use it and feel good. Its also good to take the edge off when you have a flare up. WELL, PEACE OUT and good luck and HEALTH and Happiness to all. Later.

Jeff:)

Please note that I do not endorsethe use of Marijuana or any other drug. Jeff has found that it helps him and that is all that matters. - Shaz

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