Community Forum

In October 2005 I was diagnosed with Crohns, had a really hard time for 2 years and this past December had a bowel resection. Everything was going really great for 10 months until I started having stomach pains again and flares so I went to see my GI, had another colonoscopy and found out my crohns is back and now it's in my colon too. Oh and I also have ulcers around my surgery site. I was told I would have at least 2-3 years in remission and now a year later I'm back in the same boat. I'm having a really hard time dealing with this and was wondering if anyone knows how I feel and can help me with this. My boyfriend and family are trying to help but since they dont live with the disease they dont really understand and would love to talk to someone who does. Sorry to vent just want some help. Thanks!

 Reply posted for minnie.

I understand how u feel completely. I had a resection in Nov. of  07 and had my Crohn's back six months later. I had a second resection in Nov. of 08. My recovery is slow, but I'm hoping for a break. Hang in there. You're not alone.

 Reply posted for nana.

 Reply posted for cassiew.

Hi there

I have spoken to some people who have had multiple resections done and I'm not sure about the nutrional aspect.  I know that I have to take B12 all the time now.  The one lady I know of is very skinny though - so I wouldn't be surprised if she has issues.

I had a rough night last night too.  Flaring on my ride side and I try not to take pain pills unless I absolutely need them - but at 4:00 am I took one so I could at least get confortable for awhile.  I guess I'm going to have to call my doc on Monday.  I really don't want to end up in the hospital for Christmas.  What do they do when they give you the Remicade ?  Are there any bad side effects from it.  I'm afraid that I might be the same as you and have too much scar tissue and be blocked.  I have 3 C-Sections for each of my children now 28 and 25 and 19.  I have heard from people that they feel their best when they are pregnant - :) so speak to your doc about that.  I'm 49 and holding and a nana now :)  I do alot of fundraising because I don't want my grandchildren stuck with this.

It's nice to have someone to talk to.  I find it helps me when I know I'm not the only one and that I'm not crazy or being a whiner.  Sometimes I think "normal" people would probably be on the floor screaming if they were us.  My doc says my pain threshold is way up there.  But it is easy to get depressed - so we have to not fall into that trap !! 

I need to get stronger and better - I'm holding Xmas for 35 family members next Saturday :)

Take Care

Joanne as Nana

 Reply posted for nana.

I did remicade for a couple months and it actually worked. There was just to much scar tissue and I had a blockage so I needed surgery. I was put back on entocort which doesnt seem to be working for the 2nd time and 6MP. I agree with you completely, I'm so tired of being sick all the time. I'm tired of waking up in the middle of the night with flares like I did last night. I'm tired of it all in general. In regards to food, I stay away from the foods that I know will make me sick. Dairy, steak, fast food, salads, etc. I'm scared I might need surgery again soon but I was told that if they take more than a foot, you can start to have nutritional problems. Do you know anything about that??

Just curious do you have kids? I'm worried I'm not going to be able to have kids one day. I hope you feel better soon too! And that you dont have to have surgery again.

 Reply posted for nana.

I did remicade for a couple months and it actually worked. There was just to much scar tissue and I had a blockage so I needed surgery. I was put back on entocort which doesnt seem to be working for the 2nd time and 6MP. I agree with you completely, I'm so tired of being sick all the time. I'm tired of waking up in the middle of the night with flares like I did last night. I'm tired of it all in general. In regards to food, I stay away from the foods that I know will make me sick. Dairy, steak, fast food, salads, etc. I'm scared I might need surgery again soon but I was told that if they take more than a foot, you can start to have nutritional problems. Do you know anything about that??

Just curious do you have kids? I'm worried I'm not going to be able to have kids one day. I hope you feel better soon too! And that you dont have to have surgery again.

 Reply posted for cassiew.

Hi there

I don't go on this site very often - so sorry I'm a bit late in replying.

I know EXACTLY how you are feeling.  You are not alone.  Your story sounds just like me.  I was diagnosed 4 years ago - went through a year of pain and 5 hospital stays.  I had the surgery done (resection) and now here I am a little over a year later and the Crohn's is back at the resection site.  Just last week my specialist put me on a new drug (steroid).  I did not want to go back on prednisone - I've had enough of that !!  But I've been taking this new drug for about 1 1/2 weeks and I'm still having alot of pain of my right side.

I really really get sick of being sick.  My family is concerned - but your family can't really understand.  I'm a bit depressed right now and thinking that I may have to get surgery again.  I've talked to some people who have had resections done 4 - 5 times.  I've also had some people say that I should be trying the Remicade but I don't know......

What do you do ?  I try to exercise and watch what I eat.  I don't eat any fruit (except bananas) no fresh veggies - just really well cooked mild ones.  Carbs - that is what I eat. 

Hope you can get feeling better and avoid any more surgery.