Hi all -I haven't been on the site for quite some time now but thought I would check in and tell my story on a resection I had back in Feb 2011. Best wishes to everyone on this site and to those that are struggling with the DD. I do want to say that this story or at least this chapter of the story has a happy ending. Some of the details may be a bit gritty but you know how it is....
So last February I was treating my DD with Remicade which seemed to help at least on the surface. I had been on Humira before that and it was what seemed to be an incredible wonder drug until it's effects wore off. One night I was in significant pain the kind of pain that pushes you to go to the emergency room. Once they ran some tests and mri I believe it was determined that I had an abscess. They checked me into the hospital were I stayed for 4-5 days being treated with antibiotics I believe. This helped in healing the abscess but in the meantime it was determined that I had further complications. My terminal ileum had become scarred and inflamed. In addition there were a couple fistulas that went from my small intestine to my large intestine essentially bypassing a portion of my digestive tract. These complications would only be resolved thru surgery. At that point I was fine with this recommendation because I had reached that threshold of just wanting to do what ever helped my situation.
So they scheduled me to come back in two weeks and in the meantime my diet consisted of primarily liquids or low fiber items...dull. That two weeks seemed to stretch forever.
Well the day of the surgery came and I almost had a sense of anticipation rather then anxiety. It's weird when you feel so bad that you are willing to do what ever it takes to find relief...you do what it takes. Hope that makes sense. I looked forward to feeling better and turning the page. I didn't focus on the surgery or what it included I anticipated what it meant and would provide.
The surgery apparently went well according to the docs. They resected the small intestine to the large intesting removing my terminal ileum and appendix..(free bee). They also removed the fistulas and stitched the small intestine and large intestine. When I woke up they were actually shaking me to wake up. It was kind of funny because I almost woke up swinging since for a moment there I was pleasantly knocked out with out a care in the world and now I have this huge zipper running down my gut. But I digress.
They kept me in the hospital for another 4-5 days and actually had me up and walking the very first day I recall. I thought they were crazy but that's the protocol. It was painful but not too the point that it was overwhelming. I also had the handy dandy pain med push button that helped alot. I used that the first two days but after that the usage diminished.
Over the next few days I'd be out in the hallway in my hospital issued gown pushing my iv around. Walking at first was less then easy. But it progressed in a very short time where I was doing laps around the hallways by the last day. I'd say I was more in discomfort by the last day then pain.
A couple of side notes that those that are squeemish may want to skip.
I had to have a catheter for most of my stay but on the third or fourth day the removed it with the stipulation that I go pee. I couldn't pee for the life of me and trust me knowing what was going to happened...I tried with all my heart. Not a drop. Back in goes the catheter. I was lucky to have three nurses reinsert it while I was on display so to speak. Talk about
a humiliating experience. Now us Crohnies have been exposed to our fair share of humility but that took the cake.
Another experience is when they removed the staples from the incision. It only took a few minutes but considering there were around 30 of them I could have done with out that experience as well.
So after that it took another week at my brother's house to recoop and get around. Steps at first were challenging but after awhile a breeze. The doctor started me on Imuran a few months after the surgery since I balked at it at first. I've been on it for the last 7 months and had a scope in December with zero Crohns noted.
Since the surgery my diet has increased dramatically. I still stay away from certain trigger foods but I can eat alot more then I was before. I stay away from grease, spicy and fast foods but I have to admit I had an orange for the first time in 10 years(seriously) and it was the best orange I have ever tasted.
I also get around no problem. I've regained full mobility and don't have any gut pains for the most part. One problem though that is a daily battle is the big D. I've had D since shortly after the surgery. It doesn't matter what I do it's always there. I rely on Immodium way too much and it just prolongs the inevitable. The doctor seems unfazed by it and he put me on Colestipol which has the same effects as the Immodium. I can't gain a pound if I tried and trust me I've tried. I know for some people that is a dream come true but I'd just like to get to a normal weight.
If the Crohn's was removed and not a whole lot of intestine with it...why can't I gain weight. I'm not losing weight which means I'm absorbing but the D keeps me in check and any weight I gain is flushed at some point. It's very frustrating. I know that most people have D after surgery which can last for a long time, it varies from one case to another.
Considering I had some pretty serious surgery may draw out the time to recover. Does anyone have any thoughts on this?
Again I don't want to diminish how grateful I am to feel better every day, to be here typing this right now. From where I was last February to where I am now was a long haul but I am grateful every day D or not.
If anyone who reads this is facing surgery in their future and wants to ask questions please do. I'm happy to answer. I've been thru alot with this DD and it's had a significant impact on my life but I'm grateful everyday I can roll out of bed!
Thank you everyone on this site for helping me with my questions in the past and when those times were tough, lifting my spirit. This website is a true blessing.