My Struggle with Crohn's

[jvc7477]

I was diagnosed with Crohn's in 1975 and have really stuggled with the disease since. In 1980 i had developed several fistulas which, in my case, were small tubelike stuctures from my colon to the outside. In May of 1988 I had to have surgery to remove my colon and some of my small intestine. I was in the hospital approximately 10 days and sent home. I had to have surgery again in June of 1988. In the course of 2 years adhesions had formed and caused a slight blockage, so back into surgery i went. Everything was as good as it could be, but again 2 years later I was back in surgery. This time adhesions had caused a blockage and had cut off the blood supply to a part of my small intestine. The surgeon ended up having to do a small bowel resection. I was in the hospital for 5 weeks with a 1/4 inch plastic tube ran though my intestine. Everything seemed to be ok. I wasn't taking any meds for Crohn's until May of this year when it really got me down. I spent 2 weeks in the hospital but luckily did not have to have surgery. I am now taking 2 500 mg 4 times a day of Pentasa. Proronix 40 mg twice a day and Dicyclomine 10 mg 4 times a day. Oh, also since i was diagnosed with Crohn's I have developed arthritis in just about evey joint in body and have several surgeries for that too. Pretty bad when people working in surgery knows you by your name .

 

[Angrybird]

Hello and welcome to the forum, I am sorry to hear that you have had so many struggles with this nasty disease :hug:

How long have you been on the meds? Have you felt any improvement yet? What symptoms did you have that led to your admission to hospital?

AB
xx

 

[Jenamonkey]

Hi jvc7477!

Welcome to the forums. Thanks for sharing the story of your battle with Crohns. I was diagnosed about 3 years ago, and while it's daunting to hear about all the surgeries you've gone through, it's also good to hear from someone who's dealt with this disease for such a long time and still manages to have a sense of humor about it (although I'm sure you weren't kidding when you said the surgery folks know you by name!)

May your guts be kind to you today!

-Jenn

 

[Ckt]

Amazing story!you have to be a really strong person!i was diagnosed in 2000 but have probably had it since 1983 when I had a ruptured appendix. In a foreign country): I too have had several biwel obstructions due to adhesions and I have often wondered if having an ileostomy would take care of those every two year surgeries!
I has never had fistfulas and I have always been so grateful for that. Thank you so much for sharing your story!!

 

[jvc7477]

Angrybird this last flareup started probably last year sometime. I was admitted to the hospital this last May because of severe abdominal pain, severe bloating and constant diarrhea. While in the hospital i was fed intraveneously for a week and started on Pentasa, Bentyl, Protonix and Carafate In the beginning.after I was diagnosed I was put on 60 mg of Prednisone, Imuran, Flagyl, 6MP and Azulfadine. The prednisone was the worst of them all. What i read of prednisone was that you generally take it 2 maybe 3 weeks the you're weaned off of it. I was taking 40 to 60 mgs a day for 20 years. I had to go to the eye doctor once a month because prednisone if i remember right can cause glaucoma.

 

[jvc7477]

Jenamonkey, You have to have a sense of humor about this. You can't let it get you down emotionally. If you do then the disease has won and I refuse to let that happen.

 

[jvc7477]

has anyone seen pictures of what Crohn's looks like ? My last visit to the hospital the dr did a scope down my throat and through the stoma and i have pics of what crohn's looks like

 

[David]

Hi jvc and welcome.

With all those surgeries, are they monitoring your vitamin B12, folate and magnesium levels? And how about vitamin D? If not, I'd strongly suggest discussing getting those tested with your doctor as there's a decent chance you're deficient and proper supplementation can make a big difference.

Again, welcome to the forum

 

[jvc7477]

Hey David, blood work once a month since last April and everything is fine. One thing to know and remember (what i have been told by several Drs.) is that the large intestine (colon) is what absorbs the moisture from the stool. Once that is removed the small intestine has to take over for the colon. This time could be short or long. That's why with an ilieostomy the stools will always be somewhat watery. Also that the stool from an ilieostomy is packed with enzymes from digestion and can cause up to 3rd degree burns so care should be given to make sure you apply the aplliances correctly.