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How many of you have had section of small bowel removed???

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Posted 3/29/2011 1:50 PM (GMT 0)
Hello everyone

Hope life all ok. Just got home from hospital and got results from MRI Scan which shows section of small bowel is very scared and they need to remove this using key hole surgery. Dr said may not feel any diffrent after which does not seem very good so want to know about others expereince.

I am just wondering how many of you have had section of there small bowel removed?

What was the reason you was told for this?

How did the surgery go?

Do you feel better or worse now?

Thanks

Kaylea x

Posted 3/29/2011 2:08 PM (GMT 0)
Hi Kaylea,

I have had two "open" bowel resections. In the first one which was an emergency surgery they removed 12" of small and large bowel. In the second resection they removed another 5" from the same area because I had developed another stricture at the reconnection site. I believe the reason the second one developed is because I was told that I no longer needed Crohns meds because of the first surgery. I now faithfully take my maintenance meds and have been in remission for quite awhile.

After my recovery from both surgeries I did feel alot better. Although sometimes you have to deal with some changes. For example, some foods irritate me alot more than they did before and I am definetly now lactose intolerant, where I wasn't before. So yes, there will be some changes, but nothing that you can't learn to deal with by avoiding your trouble foods etc. Hope that helps. Hugs!
Posted 3/29/2011 2:10 PM (GMT 0)
I had surgery about a week and a half ago to remove a foot of small bowel near the terminal ileum. This was due to it being so scarred that food was no longer passing and instead food passed thru fistulas that had been created. Surgery was not a matter of choice but I'm glad I'm on the other side of it now. I'm no longer at the hospital and am now passing food the proper way. I still have a long way to go since I'm on a low res diet I'm letting things heal down there but challenged since my diet is minimal and diarrhea is a daily occurrence. I suspect that it's just a waiting process and allowing things to heal. Patience is tried but I just keep looking forward to the day I am back to "normal" and feel better. That is what you have to hold on to when surgery is the choice at hand. The expectation that the quality of life will be improved is what carries me.
Posted 3/29/2011 2:21 PM (GMT 0)
You poor thing. But don't worry. I had a fistulae from my bladder to my intestine and was told the only way to fix it was to operate. I put off the surgery as long as I could, but after I finally had it, I wondered why I had waited so long! The pain disappeared, I could eat again, I could live again, my husband and I even went on a trip. I have since had 3 surgeries since then, 4 in total, and each one after that I looked forward to, knowing I would feel better afterwards. So don't worry. Having Crohn's, we are faced with surgeries. This will be your first, so this is why you are scared. But think of it this way, it can't be any worse. Good luck to you.
Posted 3/29/2011 3:34 PM (GMT 0)

hey conker, like nanners, I've had total of 9ft, now short bowel syndrome.(borderline). I got remission from all of my srugeries. the first one lasted 19 years, just afew gas blockages. My first one was emergency type, after that, more on elective side, but again found remission. that one lasted 20 years as well. no med's.(mistake). now rem and oxycodone's. lots of cd issues now, night sweats, plenty of arthritis, and pain issues. I wish you the best

AG

 

Posted 3/29/2011 3:42 PM (GMT 0)
I have had various amounts of small bowel removed due to abcesses and stricutures and also colon and rectum so I now have an ileostomy. Best thing I ever did. My colon was so badly scarred that I had no choice but tbh wasn't a difficult decision anyway as was so ill. Only food I can't eat now is mushrooms but apart from that everything else is ok. No pain anymore and aside from a major flare recently which is now at long last getting under control, can live my life as I want to. The ileo was done 19 years ago so have had plenty of time to get used to it.
Posted 3/29/2011 3:52 PM (GMT 0)
I've had two resections for scar tissue causing obstructions. It had to be done.
Mine were also open abdominal surgery, which is a fairly rough recovery, minimum 6 weeks, but just another hard part of this DD.

Unfortunately, surgery is not a cure, but is often necessary. It can help with symptoms and stop obstructions. Some people go into remissions for years, others don't. Docs can't always tell who gets the goods...;-)

Best wishes!
Posted 3/29/2011 5:28 PM (GMT 0)
Those responses that surgery provided a lengthy remission are inspiring. I pray and hope that I'm included in that category and anyone else that decides to have surgery.

Just thinking outloud. Thanks for that good feeling.
Posted 3/29/2011 8:59 PM (GMT 0)
I am just over 3 weeks post surgery from my 4th resection. 2 of my resections were for active disease that could not be controlled with medication. One was for scar tissue and my most recent one was because I had adhesions wrapped around my anastamosis site. I had 13+ years in between my last surgery and this last one, and the pathology report showed NO active disease. I am expecting to get a lengthy stretch of time before I have to even think of surgery again.

Surgery is something that most CDers eventually have to consider, but as most have posted, you do have a better quality of life after.
Posted 3/29/2011 10:55 PM (GMT 0)
I had open surgery and a foot and a half of my small bowl removed. I needed it done because after 6 months of trying to avoid surgery I was in desperate need. I felt fantastic after the surgery.. well not right after. after I healed up and such. It's 4 years later exactly and am having my first real flare sense then..
Posted 3/29/2011 10:55 PM (GMT 0)
I forgot to put that my bowel had a stricture & scar tissue that would not go away with medication.
Posted 3/30/2011 9:35 AM (GMT 0)
Thank you everyone who has replyed to my thread i have private messaged some of you.

Some of you said you surgery was done cause of a emergency. What made it to you a emergency? Sometime i am in so much pain i think i need to go hospital but then just put up with it.

How long did it take you to recover at hospital then at home? I run family business and can’t even take weeks holiday as they depend on me so much.

I been told it will be keyhole surgery how many of you have had this and do you have any scars?

Thanks Kaylea
Posted 3/30/2011 10:59 AM (GMT 0)
Conker I had my second open resection a year ago January. It was supposed to be laproscopic but there was just too much scar tissue. Since they removed a very small section this time and I wasn't in a major flare recovery went rather quickly. I did have to take off 6 weeks at the doctor's orders. If I didn't have such a long commute to work I could have easily gone back in 4 weeks.

That said, don't push yourself to get back to quickly -- someone else will have to step up and cover you while you recover. It could make things worse. Not trying to scare you just trying to give you a realistic picture of how it will be. Even with lapro surgery you have to remember it is still major surgery, just less invasive.

There are some small scars with lapro surgery. I have 2 small ones where they tried and failed, but what the heck I also have a 9 inch scar. All battle wounds in my mind.

Good luck to you.
Posted 3/30/2011 11:49 AM (GMT 0)
Thanks for quick reply

There is no one else just me, my brother and father and neither of them know hot to operate computer!
I just work from home i suppose.

Thanks again
Posted 3/30/2011 12:58 PM (GMT 0)
My story is old hat around here now. But what the heck:

My Crohn's first struck in mid-1975. I was Dx'd in early 1976. The only medication offered back then was asulfadine which I couldn't tolerate so I went unmedicated other than ER trips about once a month (menstrual period aggravated the Crohn's) for a shot of phenergan and demerol for 2 1/2 years.

Early 1978 I obstructed, the locals said perforated as well. I'd blow up like a balloon, excruciating spasms and the usual nausea and often vomiting. I ended up in ER one night vomiting what tasted and smelled like feces and was admitted.

I spent 6 weeks in hospital on IVs w/a naso-gastral tube. At 6 weeks when I complained about its causing pain I was told TS you gotta have it. I pulled it out myself. Sure enough 3 bloody rings right where I said it was hurting. When they said they had to put another down I panicked. I called Mayo Clinic, they told me to report to St Mary's Hospital's ER there. I called the airport, made a reservation, called hubby at work and told him he had 2 hours to leave work, go home, pack some clothes for me, pick me up at the hospital and get me out to the airport.

By some miracle we made it!!! Plus, keeping in mind this was BEFORE the days of 'puters, the local hospital managed to have all my medical records and xrays ready to go!!! I've always been impressed by that, even now.

I flew to Mayo the same day and had emergency open abdomen surgery the next day. They removed 18" of the mid-ileum.

AND I WAS BLESSED W/A 20 YEAR REMISSION!!!!

Since its return the Crohn's had been very mild. I'm on Pentasa and Imuran. Neither one can seem to do the trick on its own. Most all of this time since its return I've been in remission or symptomatic remission and the couple of flares I've had have been very mild.

The recovery from the surgery was actually pretty much a piece of cake. I credit that to the 6 weeks of hospitalization prior to the surgery as well as the Mayo surgeon. There wasn't any active disease at the time of surgery which I think made a world of difference and increases your chances of a long remission. I was walking the halls of St Mary's the day after the day after surgery pushing my IV pole, pump, etc. I was off pain meds well before being released and never needed any at home. I was at Mayo a total of 10 days. AND I didn't have an NG tube after surgery during recovery. I did have a tube running out of my left side for drainage which sure beat having an NG tube!!!

I do have a high grade obstruction now at the old anastomosis that Mayo would like to get at before it causes some serious problems - but I also have a benign simple cyst on one ovary that they would like to remove as well. Since neither is causing any symptoms I'm opting to wait until one or the other does and then have a two-fer surgery and get them both taken care of at the same time.

I also have COPD from 50+ years of smoking 2 packs a day and I'm gambling and figuring I'll croak from the lungs before I need the two-fer surgery. smilewinkgrin

May your surgery be as easy on you as mine was on mine, your recovery be as easy and uneventful as mine and your remission be even longer than mine!!! Good luck and God bless. yeah

Posted 3/30/2011 2:21 PM (GMT 0)
Conker,

My emergency resection was because of a complete blockage. Nothing was going to move thru that thing.

My biggest mistake was not staying on my Crohns meds. If maybe I had done that I wouldn't have needed that emergency surgery. Was told after the first resection no longer needed meds, so didn't take them. Ended up with another surgery only 3 years later. So if you do have surgery, make sure you get back on your meds.

Hugs
Gail*Nanners*
Posted 3/30/2011 5:55 PM (GMT 0)
I was diagnosed in May of 2008 and had surgery in November of 2008.  They removed 18 inchest of my small intestine.  I believe it was one of the best choices I made.  Not having had Crohns very long, I knew very little about the disease.  All I knew was that from May to September I was in the hospital 3 different times, sometimes as long as 8 days at a time for the pain.  I missed my daughter's 4th birthday and my 10th wedding anniversary with my husband.  I have four kids and knew that I could not continue to go be in the hospital so much.  I don't know that I ever went into "remission" but I feel so much better.  Except for a surgical hernia surgery, I have not been in the hospital for my Crohns since my resection.  I still have the big D, I still ache all over and have random things that make me feel just "off" that I blame on the Crohns.  I still even have pain but not to the extent that I had before my surgery.  My doctor tried to talk me out of the surgery and I am so glad that I didn't listen.  Doctors only know so much.  They don't know what it is like to live with it and they didn't know the emotional pain I was in every time I was stuck in the hospital and away from my husband and children.  Good luck to you!
Posted 3/30/2011 11:16 PM (GMT 0)
I had "keyhole" surgery to remove my ileocecal valve with some of the small and large intestine due to a small tumor near the valve. The scars from the holes are small and barely noticeable but you still need a larger incision so the surgeon can actually remove the part of the bowel being cut out. I ended up with an incision about 3 inches long under my belly button.

That surgeon did a phenomenal job with the incision - it is very difficult to see.

I had surgery on a Monday and got out of the hospital on a Saturday. I couldn't leave until my intestines woke up and started working again. I was out of work for 6 weeks but that was mostly due to my job, I worked with violent children and needed to able to protect myself if necessary.

You might be able to work from home on the computer shortly after your surgery IF you can do the work in short bursts. I was so tired for weeks after the surgery that I took multiple naps during the day. I had even more brain fog than usual too. If you push yourself too hard, you could end up needing to miss more work than if you had taken it easy for the first few weeks. You can expect a lot of urgent diarrhea for weeks after the surgery.

You won't be able to lift much weight either. The limit depends on your surgeon. Be careful and follow this rule for even longer than your surgeon recommends because you don't want a hernia.

Hope this answers some of your questions.
Posted 3/31/2011 12:03 AM (GMT 0)
With all of my surgeries I had open incisions so I have a large scar running down my stomach. As to when you can return to work, well it depends on how you normally bounce back from things. After my first surgery I was back in a month. My second I went back to work after 10 days, my third it took 2 months as large open wound being packed. My fourth was 6 weeks and my fifth was 2 weeks and my last was 6 weeks.

It also depends on how well you are before the surgery and what operation you have done. My first two were for ileostomy - loop then end. My third was abcess around stoma so had to resite it. My fourth to remove colon and rectum. My fifth and sixth for stricture and abcess.
Posted 3/31/2011 3:40 PM (GMT 0)
Sometimes it is hard to remember that those who have been most successful w/maintaining remission of their Crohn's have no need to be here and are off in the big world living their lives. That it is mostly those who are having difficulties w/their Crohn's that NEED to be here for empathy, encouragement, advice, support, etc.

I know I tend to get lax about coming to the forum and lending my support due to other interests at times.
Posted 4/11/2011 6:59 PM (GMT 0)
Thank you all for your replies and your stories.
I got my date thru today going in next Wednesday the 20th so going to miss Easter and all those chocolate eggs :-( and bank holiday get togethers.

And tips on how to fight boredom on a properly gastro wards with every over age of 80 to keep me company!
Posted 4/11/2011 7:47 PM (GMT 0)

conker21 said...

And tips on how to fight boredom on a properly gastro wards with every over age of 80 to keep me company!

PSP :-)

us.playstation.com/psp/
Posted 4/11/2011 7:49 PM (GMT 0)
The first few days you are going to be trying to recover from the surgery. I won't lie there is gonna be some pain, plus you are really tired and weak. By the third day you might be able to walk around some, and might be able to play some games on the computer or watch a movie. I never had much interest in doing much, as I was just trying to recover. Just watched alot of TV and visited with friends and family that came to see me. Hugs!
Posted 4/12/2011 4:04 AM (GMT 0)
This is my first post here:

A year ago I had an open abdominal surgery (April 2010) and being 25 at the time it clearly was the worst time of my life. However, only 6 weeks after that (once I was able to get back to my daily routine) things got better exponentially.

I have always been under-weight. So far under-weight that doctors at one point insisted that I eat ANYTHING (fast-foods included) just to gain weight. Now, I am just ever so slightly under the average weight for my height and I'm eating healthy.

It's been a year since my surgery (only one in the 16 years since being diagnosed) and I have not been on any medication.

If I had to do it again, I would do the surgery. It has changed my life. It wasn't all good (especially during that first few weeks) but over all it has had a positive affect. There was some severe pain (mostly only the first day or two) and lots of re-learning of what I can and cannot eat. But that's just something we all have to deal with.

I know it must be scary and worrying, but you've got to focus on 2 months after the surgery, where you will be mostly recovered and can continue on with your life.
Posted 4/12/2011 1:42 PM (GMT 0)
Get up and walk, Walk, WALK ASAP after surgery. The more you walk, the sooner your intestines wake up from the anesthesia and start working, the faster your recovery, the sooner you go home. So WALK those halls of the hospital, day in and day out, just don't overtire yourself. Short, frequent trips at first. And there's nothing like holding a pillow tight over your tummy to help w/the discomfort when first starting to walk. Worked great for me! I was off pain medication well before being released and never needed any pain medication at home. And mind you, my surgery was way before there was laparoscopic surgery and was an open abdomen from above naval to "just" above the pubic bone.
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