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Is a resection worth it

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Crohn's Disease
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Posted 8/29/2012 8:43 PM (GMT 0)
I have been fighting a strictor since the beginning of the year. I have been trying to stick with a low fiber low residual diet and was doing really well until I had a little ham two nights ago. I have been struggling ever since. Called in sick to work today and finally got an apt with my doc tomorrow. A few months ago he mentioned that a resection might be next on the list, and I'm just wondering how it went for some of you. I've heard people going years and then again some only lasting months without pain. Any info would be great.
Posted 8/29/2012 9:03 PM (GMT 0)
Hello Firefighter11,

At the point of having Crohn's for 22 years, I had a lower bowel resection and it was for me, the best thing that could have happened. Having Crohn's for the amount of time that I did, scar tissue built up, flare ups easily caused blockages, immense amounts of pain, vomiting, weight loss and it was just time to have it done.
Within a few months I felt amazing, took a medication (Questran) to aid in bile absorption, that lasted about a year. The only issue I had all along, for the most part, had still been urgency issues.
Besides the urgency, the pain was gone, I had been able to gain my weight back and then some. It was a much needed procedure, medically, physically and emotionally. I had an awesome 15 years before the Crohn's returned but I am nowhere near the point I had been for those 22 years.
Now I take maintenance medications.

If you decide to have the procedure, I wish you the best of luck!
Posted 8/30/2012 12:20 PM (GMT 0)
I've had cd for 42 yr's every resection brought yr's of remission. now I have short bowel syndrome, cd is in remission with unorthodox med's. I'm on ssdi. my med's are illegal to talk about on HW. have to e-mail me to find out, I believe it's in my profile

AG
Posted 8/30/2012 1:10 PM (GMT 0)
It so depends on the quality of life or lack of it that you are willing to tolerate and the risk(s) you are willing to take. We are all different as is our disease progress.
Posted 8/31/2012 12:04 AM (GMT 0)
Wow AG

you have a lot of experiance....
Posted 8/31/2012 2:34 AM (GMT 0)
I've had three resections. Each one was worth it, and each gave about 10 years of relief. Well, has been only seven years since the last one, and so far, so good. I might have gotten more mileage out of my first two resections if I took the medications, but I didn't. I figured that the surgery "cured" me, which of course it didn't. So yes, after surgery you should still be taking some sort of anti-inflammatory drug so that the scar tissue doesn't return, or at least returns very slowly.
Posted 8/31/2012 2:45 AM (GMT 0)
Hi AG,

Have a question since you're a long time sufferer of Crohn's like myself, 39 years here.
How many resections did you have?
Posted 8/31/2012 2:53 AM (GMT 0)
I've had 3 resections. The first 2 gave me 15 years of remission each. It's been 4 years since the third. I tried to avoid the 3rd, but after 10 months of heavy pred use, it was necessary because the stricture was close to an obstruction. The scar tissue is not going to go away with meds, and the risk of total obstruction is very dangerous. Have the surgery. Feel better for what could end up being many, many years. Good luck!
Posted 8/31/2012 4:45 PM (GMT 0)
My cousin had a resection in july after suffering with pain since Jan and it was well worth it and she even said she had wished she had pushed the surgeon to do it earlier, rather than listen to the GI who wanted her to go on hard core drugs and avoid surgery. They took four inches of the TI including valve and appendix. The appendix and valve were all bundled in a mass of inflammation about the size of an orange. Pathology tests taken during surgery showed no active CD upstream of inflamation, none downstream, none in colon or rectum, and only a little in the TI part removed. The surgeon suspects her problem all along was the appendix and not the CD , and the CD just came for the ride. Now she is 100% better, no D, no pain, feels great expect for pain in muscles from predisone withdrawls.
Posted 8/31/2012 5:06 PM (GMT 0)
I've had two resections and I can definitely say that, aside from the recovery period in hospital, those surgeries are the best thing that happened to me since my diagnosis. After you've recovered from the surgery you won't feel the pain that comes with Crohn's, a large number of my own symptoms disappeared afterwards as well. I was in remission for four years following the surgery and the only reason I needed a second was because of a rare complication with Crohn's Disease.
Posted 9/2/2012 1:34 PM (GMT 0)
Hi there.i am unfortunately an old pro at resections having had six of them during my lifetime.i had 4 when undiagnosed with crohns then have had two more since 2000 when I was diagnosed. I kinda feel like a freak of nature! On resections..I have usually felt better following my resections(although to be fair 4 of them were done emergently so I could only go up from there!)I have had 4 other abdominal surgeries that were probably crohns undiagnosed..
Although it is in no way curative for crohns and I have also been on biologics following them,I believe it did improve my quality of life for a time. I do have short bowel syndrome now and am pretty much having to stay at home because of unpredictable bowel incontinence and diarrhea which for me is extremely painful. I am going to a very renowned IBD clinic this month to lobby for an ileostomy.
I don't take this decision at all lightly believe me. But I have reached my limit on what I am willing to put up with. I cannot work,I cannot have a social life although I am blessed to have a very loving family and group of friends.
I have tried all sorts of anti diarrheals and bile binding agents. They do not work for me. I am a nurse and know how to keep myself hydrated thank goodness and I also know no one will advocate for me as well as I can for myself. I just hope I'm heard and feel I will be.
Listen, you are doing the right thing..research as muc as you can, ask ppl here their experiences and list the pros and cons...I asked this on another forum about the ileostomy and will be sure to present my case in an articulate, non emotional(as muc as I can) way..it's your body and your life! The doctors do not live in your body.you do. If you do not get the advice you need find another doctor. My gi doctor here is fantastic and welcomes the second opinion..but she is incredibly conservative. To the point of prolonging my pain. Nuh uh! I'm done.and done! We all have our limits!
More surgeries can cause..well..more surgeries!adhesions form with each one but if this is your first and your quality of life isn't acceptable, it can make a huge difference. I would also suggest asking about new techniques like laparoscopic surgery for resections and robotic assured ones..they find that less manipulation of organs decreases adhesion formation . Just something to consider.
Posted 9/3/2012 10:05 AM (GMT 0)
For me it was the best thing I could have done, my quality of life was so poor. I had my resection Feb 2011 and as far as my crohns was well worth the 3 month recovery
Posted 9/3/2012 1:03 PM (GMT 0)
sooo - firefighter11 - did any of these comments help you make a decision? What did your doctor say?
Posted 9/3/2012 5:48 PM (GMT 0)
Thank you very much everyone. My obstruction passed on Thursday so i went back to work on Friday. Stayed on a liquid diet till yesterday and then started getting back to normal and I'm doing fine now. My doctor told me he would rather weather these small storms than make a bigger one. He mentioned that a resection may cause people to to have more urgent bathroom visits and with my job that's really not an option. I just have to be carefull of what I eat, which is anything processed and with no fiber. Kinda stinks but it works . All the healthy things are bad for me haha. just gonna stick with my Cimzia and azothiapran for now. This is the longest I have made it without trouble for along time and he said my blood work looked good exept for the inflammation of course. So that leads me to think that if I'm carefull for awhile my inflammation will go down and I might start to get back to somewhat normal life. Thanks again
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