losing my mind! (newish member)

hello, I've only posted once on this forum so I guess I'm still a new member. I've been living with Crohns for about 5 years now and things have gotten worse!

I'm currently on 6mg of entocort per day, humira once a week, and iron suppliments. Things have been horrible for the past 2 years.This year I found out that I have a fistula(and then a second one popped up 2 months later) and I need to get a resection surgery. I've been waiting so long for a date and finally got on for May 25th, however, my nurse called today saying it has to be pushed to a later time. I can't live with this pain anymore. As much as I want to feel better I'm scared to death for this operation, my last operation (and how they diagnosed me with crohn's) was a nightmare and long story short I had to get cut open three times in the same place. So I'm scared and sort of in denial because I dont want them to remove parts of my body, I'm 22 and I'm afriad that once they start cutting away it's never gonna stop. Now recently the area around my scar from the first operation I had is very sensitive and I can feel a bump right under it.   The pain I go through everyday is unbareable that sometimes I end up vomitting. I can't eat, sleep, or walk! I'm in bed everyday and it sucks. I know that it sounds like I'm nagging because I know that a lot of you have gone through the same thing, and I apologize. I just need to vent to someone who understands what I'm going through. I don't know what to do to control the pain so I just take it, It feels like knives stabbing me, I think it might be gas, but it feels like im being gutted like a fish and it never goes away, it's just day after day.

I was wondering if anyone could tell me  more about bowel resection sugery so I can know want to expect. How long does the recovery period last? how bad is it after the surgery? does the area hurt? do I need a bag connected to my intestine for a couple of days (even if its gonna be done by laser)? I'm really distressed.

thanks for reading/listening.

i am so sorry for all you r going thru
i really think pinfram has great advice n input
let us know how you are doing
lyn

I had 3 resections of terminal ileum. They were all open incision from stem to stern and didn't hurt much at all. Especially after the staples are removed. I had pain meds in the hosp for 5 days but none at home. One important thing to remember is that you must take it slowly when you return to eating. Start with soft bland stuff the first day at home and work your way up to regular food as you can tolerate it. Oatmeal or cheerios for breakfast because they are soluble fiber.

You will feel so much better right away. I always felt like a new person. Be prepared to be tired alot. Abdominal surgery really takes the wind out of your sails for awhile, but look at it this way. All you have to do is eat, sleep and get well. Do you have someone to help with shopping? You won't be allowed to drive for 2 wks. Best of luck. I know you are going to feel so much better!

I have had 2 open resections myself. Have the docs said whether they are doing the surgery open or laproscopic? With the open you will be in the hospital at least 5 days and it is a little more painful, but definetly you will be given good pain meds to help. Your recovery will be about 6 weeks. Now with the lap the hospital stay is a little less and the recovery generally about 4 weeks. I agree with Dunny, try to walk as much as possible afterwards, it helps to wake the bowels back up and running again. Do expect some explosive d for awhile until your body adjusts to the changes. And most importantly be sure you get back onto maintainence meds afterwards so you don't have to have a repeat. Heres to a long long remission. Hugs

thank you all for responding, it means a lot to me.
My surgery will be done laproscopically.
to hldwodrgs: howfar apart were your three surgeries? was there a good amount of years in between?

thanks again for all your support and kind wishes!
xoxo

The reason your GI can't tell you what to eat is because people differ so much on this disease. I could tolerate things others on here couldn't, even when I was in really bad shape. During my flares, I stuck with a mostly liquid diet but still lost a tremendous amt of weight (but in my case, I can stand to lose weight so this wasn't all together a bad thing!). I found I could tolerate mushy Easy Mac (mac and cheese), cup of noodles (ramen noodles in broth), along with Boost/Ensure, iced coffee (but I had to do soy milk for some reason), chicken broth... The pain did not go away but it made it a lot more tolerable. I just tried different things a little at a time.

Do you have good pain meds? This last flare, I took Vicodin for pain and still was able to eat most anything.

I had a resection on Feb 3. I really fought if for years before and now that I'm on the other side, I'm glad I did it. I had a lot of damage that could have gotten really bad really quickly. I thankfully did not have to wait long for mine, though. As soon as I gave in, I saw the surgeon within 2 weeks and mine was scheduled a week later - as soon as they could get an OR scheduled for me. I hope you can get in sooner...

Aimee =) said...
The reason your GI can't tell you what to eat is because people differ so much on this disease. I could tolerate things others on here couldn't, even when I was in really bad shape. During my flares, I stuck with a mostly liquid diet but still lost a tremendous amt of weight (but in my case, I can stand to lose weight so this wasn't all together a bad thing!). I found I could tolerate mushy Easy Mac (mac and cheese), cup of noodles (ramen noodles in broth), along with Boost/Ensure, iced coffee (but I had to do soy milk for some reason), chicken broth... The pain did not go away but it made it a lot more tolerable. I just tried different things a little at a time.

Do you have good pain meds? This last flare, I took Vicodin for pain and still was able to eat most anything.

I had a resection on Feb 3. I really fought if for years before and now that I'm on the other side, I'm glad I did it. I had a lot of damage that could have gotten really bad really quickly. I thankfully did not have to wait long for mine, though. As soon as I gave in, I saw the surgeon within 2 weeks and mine was scheduled a week later - as soon as they could get an OR scheduled for me. I hope you can get in sooner...

I dont take any pain medication except for tylenol. my doctor gave me one kind, I don't know the name but it's a mix of tylenol and codine. it doesn't really help and it makes my heart race, so I only take it on ocassion.

you're lucky you got your surgery within a couple of weeks. I've been waiting for over 2 months. My doctor and I agreed to wait til after I finish my semester of university but I was under the impression that as soon I was done in May, the surgery would happen, guess not.

pimfram said...
Crohn's is very individualist, you need to determine what you can tolerate and what you can't. Dietitians won't be able to tell you what you can handle, it's pretty much trial and error. What I consider a liquid diet is basically living off apple sauce, pudding, Ensure, etc. It should be tolerable and will hopefully make things less painful until you can get the surgery.

That sounds really tough, I'm verrrry stuborn and usually give in to my cravings even though I can feel the pain a couple of minutes after. But I'll give it a try!

 thanks.

Hi Cats_eye,

Your concerns are normal.  My daughter has been in remission since her resection in February, 2005.  She has been on Imuran as a maintenance drug.  She feels fine most of the time and is living a normal life.  We've had some scares, but have been lucky.  Actually, since she has Crohn's I know we react more to GI issues than we would if she didn't have it.  After all, even people without Crohn's have GI issues at times.  She does watch her diet somewhat in that she doesn't eat high fat foods and eats two salads a day.  That's where Crohn's is very individual because some people can't eat fiber but she feels she needs it.  Her GI monitors her fairly closely.

I hope that your resection will also put you into a long-term remission.  Like I said, your fears are normal.

Please feel free to ask questions and to vent.  I know resection surgery is very scary.

Debbie in Chicago

Walking really helps me. I don't know why but when I have alot of gas I start walking around the house or office (wherever I am at the time) and it seems to help me burp or fart it out. Also, gas X helps some too. Good luck!