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bowel resection any advice

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Posted 9/16/2008 1:32 PM (GMT 0)
I have recently had bad flareup of crohn's and they are talking about a resection, this would be some of small bowel, a bit of large intestine and i supppose the appendix as well. My question is to anyone whose had one did it help? did it make a difference (worse or better)? can you describe operatio, eg do they pump your stomach full of air which souds painful and do you wake up with a tube in your nose? Also how long did it take to recover?

I am not happy about the idea of an operation, I have had crohn's for 15 years and managed without one so far. I was originally told that the success rate was 30% which sounds like a failure rate of 70% to me but what have others found?

Posted 9/16/2008 2:07 PM (GMT 0)
I had it done i felt good for about 5 years and i think it was worth it. It took about 2 months to get pretty much back to normal, i mean for the big D to slow down. You do get blockage's at where they join it together, but i don't anymore since i have been on Remicade. My advice is get it done if there is no other option, its worth the 5 years of feeling good.
Posted 9/16/2008 5:29 PM (GMT 0)
I had my resection 2 years ago.  Still in remission.  I had to have a full abby incision because they needed to repair my bladder.   I didn't have a ng tube down my nose but did have to have a catheter to give my bladder a break.  Even had to take it home with me.  Fun....not.   I was back to work in 4 weeks but didn't get my strength back for many, many months.  But I did end up in the hospital again 3 months after surgery for 2 weeks because of a bad reaction to 6-mp, so that might have been the reason for the delay.
Posted 9/16/2008 5:43 PM (GMT 0)
I think the 30-70 rate probably means that only 30% of people never get Crohn's bad enough to need another resection. I had one a year ago and the active disease is back. But it was worth it, I was very sick and getting worse all the time. Just like any major surgery it wasn't fun, but definitely bearable.
Posted 9/17/2008 12:30 AM (GMT 0)
Hi I had one in Jan. and darn glad I did because nothing was getting out. Had the nasal tube and it was only in for a day or two. Hoping all the best to you and keep us posted any idea when you need to have it done?lgail
Posted 9/17/2008 1:15 AM (GMT 0)
I had a resection 10 years ago. After recovering from the surgery I was in remission for 5 years then only had mild symptoms until a year ago.
I am starting Humira in the next coupld of weeks and if that doesn't work I will be having another resection.

It is definitely worth the surgery to have a normal life for a few years.
Posted 9/17/2008 12:07 PM (GMT 0)
I want to thank everyone who took the trouble to answer. I can see how it might be worth it if necessay but I cant be sure it is necessary. plus it seems very scary! And its not a permanent solution, youre still left with whatever gave you Crohns in the first place. I dont have a total obstruction but a stricture. so Im not sure. Docs not saying a resection is essential but its an option. anyway thanks again.
Posted 9/17/2008 2:08 PM (GMT 0)
Hi Penelope-Marie,

I had the same exact problem as you for years. I had Crohn's for over 15 years and had a constant bowel obstruction. After taking prednisone i'd feel better but my doctor told me i can't stay on prednisone forever so i finally decided to get a surgery done.

I think you should ask for laparoscopic surgery. In this type of surgery they only make 3-4 small incisions as opposed to opening your whole stomach.

When i woke up i had a tube in my nose for 2-3 days but was able to go home after 4 days. I didn't leave my house for a whole month because i was feeling too weak. So complete recovery might take a good couple of months. I remember having a hard time just walking for more than 5 min.

However, the only downside i see is that now i have short-bowel syndrome. My body is not absorbing fat properly which causes constant diarrhea. But i can control it pretty well with one pill of immodium.

Unless you're in constant pain i think you should wait. If it was had been upto to my doctor i would have gotten it done years ago. I got it done almost 2 years ago now and feel great since then. No pain nothing.

Hope it helps & keep us posted!
Posted 9/17/2008 2:37 PM (GMT 0)
I went 5 years undiagnosed and 6 months after Dx I was on the OR table. Full ab incision and nasal tube for 2-3 days. I didn't have a problem with the tube cause you don't have to worry about barfing on yourself. The incision was a piece of cake compared to the gas pains but they do have drugs to ease that if not knock you out for some reprieve! Had to get creative and throw in a staff infection complements of the hospital so my stay was 3 weeks due to that! Best advise...go for it. It's hard, it's scary but I do feel soooo much better. All that infection isn't good for a person's other body parts either! WALK, WALK, WALK as soon as you can put your feet on the floor. Start solid food verrrrry slowly after surgery and don't expect to eat anything green or leafy for about 4 month (if you can even tolerate it now). Good luck!
Posted 9/17/2008 3:33 PM (GMT 0)
It's definitely worth it. My mom and I (I was 16 at the time) fought against having a resection as long as we possibly could, it was only as a last resort that we agreed, but after I had recovered I wished we had done it earlier. I had the last 8 inches of my small intestine removed, along with my appendix (the doc said it was removed so that I didn't pass off a case of appendicitis as routine CD pain) I was pain-free for a few years after that. I did wake up with a tube down my nose (to help drain any fluids, mostly blood), but only for a few days, I also had a catheter, which was fine for a few days, I was too doped up to notice anyway. My only complaint was not being able to sleep on my stomach for months. I'm a stomach sleeper, it was rough for me to learn to sleep on my back.
Posted 9/18/2008 10:10 AM (GMT 0)
thanks again for replies I feel better now. One thing is that It does seem like a last resort and at the moment I do not have an obstruction in fact fairly normal BMs. Also I have realised that with a stricture you cant eat what is normally considered a healthy diet. ie you cant eat lots fibre and Ive cut down drastically on veg lentils chickpeas - all the healthy things. instead juices and soups are my only option. One thing ive learnt from this website is with crohns you have to eat what works for YOU.
Posted 9/21/2008 9:25 AM (GMT 0)
Thanks penelope-marie. I have same situation as you. Yes, live with stricture make us lose quality life, surgery can give us temperary quality life but surgery cann't cure this disease and also lead some risks of complication. I am now pain relief after one month steroids, but I cann't take steroids longer. And I just eat soft food, juices, soups and nutritous power. I will see my surgeon in next week and discuss that's the next. Best wishes!
Posted 9/21/2008 4:31 PM (GMT 0)

I have a stricture in colon which they just found last July and diagnosed with Crohn's then. Probably has been developing for quite a few years but still do not have usual symtoms. Yes, it bugs me to not eat things that I think are healthier (fibre, fruits, raw vegetables, nuts) but as far as quality of life, if this as all I had to do I would feel fortunate. I have seen two surgeons and if either had recommended or thought this should be operated on now I would have gone for it. (Told it should be able to be done laparoscopically and 6 inches of colon removed). So I am going to start methotrexate by injection tomorrow for four months and then check again. I wonder if this is going to compromise my immune system if surgery is necessary later on? Tough call but get the impression that the majority think surgery is the last resort?

Good luck and will be watching for updates! I have found this forum extremely helpful but in the end, everybody has do you what they think is best for them.

Posted 9/21/2008 4:54 PM (GMT 0)
How many areas of disease activity are there? Just one? Have the surgery!!! Skipping areas of disease activity?? Don't be too quick to agree to a resection. Ask about strictureplasty. Its surgery but it is also bowel saving surgery.

As far as the NG tube - when I had my resection I pitched a fit and REFUSED an NG tube. God bless the Mayo docs I had a tube coming out my left side attached to the pump. No big deal to remove that tube when it was no longer needed. No scar either! Ask about that. IF they could do that 30 years ago they can do it today.

And, by the way, I enjoyed a 20 year remission after my resection. So a LONG remission CAN happen. BUT - I had only ONE area of disease activity and it was resected. God is good and has blessed me many times over.
Posted 9/21/2008 5:17 PM (GMT 0)
Thanks ChronieToo. Good advice. I too know someone who had a bowel resection 20 years ago and has been symptom free and not on any medication since. So why did I agree to the methotrexate?? Any decision is tough when you are feeling good and my GI realizes this.

Posted 9/22/2008 12:15 AM (GMT 0)
I had my first resection almost 30 years ago. It got rid of the terrible bouts of cramping pain and vomiting that I'd suffered with for almost 20 years. Yes, it was worth it in my case. I basically traded that pain for chronic diarrhea and occasional adhesions and strictures, but I think I prefer those to the terrible pain.

Posted 9/22/2008 12:49 AM (GMT 0)
I had a partial bowel obstruction about 4 years ago from a stricture caused by scar tissue. Because it was scar tissue and it could not be healed, I opted for the resection. My other option was to eat soft foods until I couldn't take it any longer.

I had a wonderful surgeon, so I knew I was in good hands. It took some recovery, but not as bad as I thought it would be. Would I do it again? Yes. Unfortunately, surgery does not cure Crohn's disease. WHile I had 4 great years, it has come back recently.

It is a personal decision - good luck
Posted 9/22/2008 8:43 AM (GMT 0)
Penelope-Marie. The surgery is NOT as bad as you are imagining it! IF the surgery is done laparoscopically, then yes, they do have to pump air into the abdomen to lift the skin and fat off the organs to allow them to SEE what they are doing. There isn't that need if the surgery is open abdomen. When I had my resection 30 years ago you were not released until you had your first BM. I was off of AND HAD NO NEED FOR pain medication several days before I was released and I HAD NO NEED FOR THEM once I was released and home. And I had to make a 5 hour flight w/a layover and flight transfer at Chicago's O'Hare to get home. By myself. I was so geezly sick BEFORE the resection that I felt better the second day after surgery than I had at ANY TIME during the previous two and half years!! Just grab a pillow to hug to your abdomen when you laugh or cough and get up and start walking. The more you walk the hospital halls the faster and better you will feel!!! I was bound and determined I WAS going to the national speciality in Louisville two weeks after surgery so I had incentive to get up and moving to regain my strength. The more you lay around the weaker you are and the longer it takes you to regain your strength.
Posted 9/23/2008 12:49 PM (GMT 0)

CrohnieToo said...

And, by the way, I enjoyed a 20 year remission after my resection. So a LONG remission CAN happen. BUT - I had only ONE area of disease activity and it was resected. God is good and has blessed me many times over.

wow, 20yrs remission! That's really encourage me a lot! I wish I can have that luck. what medication you took after your resection? diet? nutritious supplements? Thanks a lot!
Posted 9/23/2008 12:59 PM (GMT 0)

nruth said...
I had my first resection almost 30 years ago. It got rid of the terrible bouts of cramping pain and vomiting that I'd suffered with for almost 20 years. Yes, it was worth it in my case. I basically traded that pain for chronic diarrhea and occasional adhesions and strictures, but I think I prefer those to the terrible pain.

30yrs! Your case encourage me a lot! I wish I can have that luck! My terminal ileum is narrowing with scar tissue and ascending colon is also scared. Although I feel better at the moment after 1 month prednisone, but I only eat soft, low fibre food and I cann't continue steroids. I think finally I have to get operation.

what medication you took after your resection? diet? nutritious supplements? Thanks a lot!

Posted 9/23/2008 4:52 PM (GMT 0)
I had a resection in Aug of 07 and they took out 18 inches of large and small along with the appendix. I have been pain free up till a few weeks ago when I had a small flare. It was so worth it to me. I had the ng tube and it kept getting clogged so they took it out the day after because it was causing a fever, i have a scar on my nose because they had a hard time, in fact the dr said I bled more from the nose then the belly. I had the full incision and glad I did because I had a cyst on the intestine that was about to rupture....I was 98% blocked from a stricture and the dr said it looked bad and he was glad I went for it when I did. I hope all goes well and you make the choice that is right for you.

Posted 9/23/2008 5:05 PM (GMT 0)
Well, at the time of my first Crohn's activity the only medication offered to me was asulfadine which I could NOT tolerate, it made me as sick or sicker than the Crohn's! After my resection Mayo offered me the opportunity to take part in a clinical trial to test asulfadine's effectiveness in prolonging remission after resection. HA! Like I would NOT take that stuff again no how!!!

I went w/o Crohn's meds the entire 20 year remission. (I don't recommend that, I would AT LEAST take Pentasa or even Imuran and that is what I INTEND to do after this pending surgery).

As far as what I ate those 20 years? I asked Mayo after my resection about what I could and couldn't eat. They told me to eat anything I wanted to, my gut would tell me what foods it did and didn't like - and they were right!!! I eventually learned to eat raw veggies only in moderation, cheeses and dairy products only in moderation. Other than that .... oh, and careful w/popcorn. Don't go overboard and don't crunch on the partially popped kernels. I could get by w/half a medium pizza one day IF I didn't try to have a slice for breakfast the next day too. On the other hand my gut has hated sour cream to this day. (And, of course, I love it - the sour cream, that is). Use some common sense and don't go overboard on seeds. Chew everything thoroughly.
Posted 9/23/2008 5:22 PM (GMT 0)

Pearl said...

nruth said...
I had my first resection almost 30 years ago. It got rid of the terrible bouts of cramping pain and vomiting that I'd suffered with for almost 20 years. Yes, it was worth it in my case. I basically traded that pain for chronic diarrhea and occasional adhesions and strictures, but I think I prefer those to the terrible pain.

30yrs! Your case encourage me a lot! I wish I can have that luck! My terminal ileum is narrowing with scar tissue and ascending colon is also scared. Although I feel better at the moment after 1 month prednisone, but I only eat soft, low fibre food and I cann't continue steroids. I think finally I have to get operation.

what medication you took after your resection? diet? nutritious supplements? Thanks a lot!

It probably sounds unbelievable, but I did not take any sort of medication after my first surgery. The doctors I dealt with at the time seemed totally clueless about Crohn's Disease; I think I was one of their first cases. They basically told me that I was "cured". Haha. I eventually was told to take Questran for my diarrhea, that helped for several years, but eventually I had to stop using it.  Ended up in the hospital once with an obstruction, another resection 3 years ago, took Pentasa, tried Remicade, to no avail...but was ultimately told that my surgeries were responsible for my diarrhea and discomfort. Right now I'm just watching what I eat, and trying to maintain. I still am grateful for the years of no more cramping, nausea and vomiting.....I went through hell with that before I had the first surgery. I was basically diagnosed by accident; they thought I had a growth on an ovary and that was why I was being operated on! Boy, were they surprised when they opened me up. My doctor said, "I can't imagine what pain you had to have been in all those years". I was just relieved to finally have a name for what I'd been through. Thank God that medically, times have improved. I wish you luck.

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