What a long few months

My story all started when I was 19. I became constipated to the point where I had not had a BM for 2 weeks. So, off to the docs I went and after a stay in the hospital, was told I had crohns. Did about 6 weeks of prednisone and that was it. I was sent on my way. Fast forward to March of of 2011 and I again found myself constipated but had long since forgot about the incident when I was 19. My dad had just died from colon cancer so I was worried about that and went to my GP. She referred me for a colonoscopy. During the exam, they could not get past the terminal illeum. So off for a MRI or cat, whichever one it was and they found a mass and thought it looked like a carcinoid tumor. They sent me to the Mayo Clinic. After the GI doc looked at the films, he seemed a bit perplexed as to what it was but thought carcinoid might be the best explaination. He said whatever it was had to come out and scheduled a resection with what I think is the best surgeon at Mayo Rochester, Dr. Cima. He expected to do it all laproscopicly. Not so. When he went in, he found a mess of fistulas connecting my bladder, one kidney, large intestines etc. and had to open me up just to get the ball of stuff out. In all, 3 feet of small and about 1 foot of large intestine removed along with my terminal illeum. I was also treated a stoma. Yippie! It got took down though. So now, I am trying to get used to the "new normal" and on pentasa and chlorestramine. We will see how it goes from here. Hopefully it will be another 25 years before I have issues again.:lol2:

:welcome: Hello there. So glad you found us and thank you for sharing your story. Crohn's can be such a sneaky disease and it's scary what it can do when it's left unchecked. But it sounds like your doing well and I wish you many more years of happy remission.

Hello and welcome to the forum

I am glad you were finally able to get to a good doc. How are you doing now on the current meds? Will certainly be keeping fingers crossed that you can go problem free for a long time to come!

AB
xx

I am doing well on the Pentasa and chlorestramine. Still watery most days, but getting better. The new normal will never be normal from what i can tell. Thanks for the welcome

Wellcome, clad you find us!

You have such a mess inside of you, did you have any other symptoms than constipation?

Just to confirm your BM's are getting better and less watery?

I only had the consipation issue, no pains, no blood in stool, nothing. That is why I thought I might have cancer. Finland! I bet that is a nice place to live.

And as for the watery stools, I have been getting better IF I remember to take all 4 doses of pentasa and 3 doses of chlorestramine. I am having firm BM's twice a week now. What an accomplishment! . But, I would rather have something coming out than nothing, so my quaity of life is pretty good. After 9 months, I am getting my energy back and feel like doing things again. I am also bi-polar and have depression. I am sure the joint pain that goes along with this little treat I have is not helping that issue although I am good now in that area as well. Seems like I see med lists on folks profile and a lot have some kind of anti deressant.

I am glad things are improving for you hun. One thing I meant to ask is do the docs ever check your vitamin levels? People with crohn's can have deficiences in this area especially after having part of their bowel removed.

When I was on Imuran, they did weekly blood tests and I guess I assume they were checking all those things. I do feel run down and maybe I should insist on a bllod test for vitamin levels? I had to quit Imuran because of the side effects. My feet broke out in major blisters that itched like heck! Glad to be off that stuff. My doc said that there was nothing else he would put me on in the line of immune supressors as they just are not as effective. Anyway.....

Definetly ask to have these checked, they are not usually done as part of normal monitoring so it would best to have these done from now on every once in a whle.