Hello Everyone ~ My Story

[kappi]

Hello Everyone ~ Kappi's Story~ Crohn's 41 years

I was diagnosed with Crohn's when I was 11 y/o. For a couple of years after high school there was some remission. However, at age 22, My small intestine burst and I had a resection and temporary colostomy. My medication has been very low prednisone and as of 2 years ago Entocort was added.

Now I am 52. Surgery is recommended again for a partial blockage and two small tumor/lesions that showed in a recent CT scan. I am scheduled for surgery. Kind of scarey to go through the surgery again because with the years of Crohns and steroids, I am not sure what to expect. I am staying positive.

Over the past 2 years I have been losing weight slowly. The last 2 months I have lost more weight. This was a problem when I was first diagnosed and now it is again a problem. I have been referred to meet with a nutrionist.

I have a great job (Vocational Rehabilitation Counselor) and am grateful. Everyone at work is supportive as are family and friends. Last year I completed a Master's Degree in Rehabilitation Counseling and passed the CRC !

Remicade is recommended after the surgery so that I will stop taking the steroids...and remain in remission. I have read this has been helpful for many and am hopeful it will work the same for me..

I am looking forward to hearing and learning from all of you, and will be happy to share what I have learned along this journey...
Thank you for visiting my post. Kappi

 

[David]

Hi Kappi and welcome! Wow, you're quite the Crohn's veteran. I bet you could share a lot of wisdom with us.

I can understand how scary the idea of surgery is but I have no doubt that you're going to be fine. Do you know specifically what area of your intestine they are going to remove? With that information, we might be able to share additional insight with you including questions to ask and possible need for supplementation after surgery.

I wish you all the best. Please keep us updated

 

[kappi]

Thank you for the warm welcome David.

I know they are removing a section in the small intestine. I was overwhelmed during my visit last week so when I go next week I will write down the specifics.

Currently I am drinking Resource Breeze (ordered on Amazon.com) and Ensure to help keep up my weight. It has dropped siginificantly the past few months.

Since I went to a conference on IBD held at UC Irvine last October, I have been perusing this forum. Glad to be here.

Again, thank you and I will post when I have additional information. Kappi

 

[Angrybird]

Hello Kappi and welcome to the forum :bigwave: Has the doc said if they will be doing this via key hole? It is definetly good to try and get off steroids before the op as it will help with the healing to be off them. I am glad you have decided to join us hun, let us know how you get on next week.

xxxx

 

[kappi]

Good afternoon Angrybird

Hello Angrybird, Where did you come up with your screen name? I am curious because I have had birds over 20 years and they make me feel happy.
I don't believe the surgery is keyhole. The surgeon said it would be an incision on the one I have already, but smaller. I am on 5 mg pred and 2 Entocort. I see a GI tomorrow..I am not sure if I will go off any, but will certainly ask. I went from 2.5 every other day to 5 pred because I was so miserable. Now, I am not perfect, but comfortable enough to go to work.

From the CT contrast report it appears the inflamation segment is in the illeium. We are not sure if the Cecum valve will stay or go. That will be determined when in surgery. Also not sure if there will be an ileostomy, also to be decided during the surgery. But the surgeon assured me this would be a temporary thing. I had this 30 years ago and it was temporary. The reverse surgery was very hard for me. Then, the two small tumor/lesions will be removed (hopefully nothing cancerous).

thank you for making me feel so welcome...regards, Kappi

 

[Angrybird]

Hi Kappi, I got the name from the game, it also suits my temperment at times :biggrin: One thing about the pred is at least you are not on a really high dose.