Crohn's Disease Forum » Surgery » Strictures & Obstructions » Small intestine resection - glad you did it?


05-22-2017, 09:13 AM   #1
rorho19
 
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Small intestine resection - glad you did it?

I'm newbie facing first surgery for two strictures suffered 4 yesrs of constipation etc am in inflammatory remission on AZATHIOPRINE but need surgery for pain of food going through strictures ....let me know if you had this done and were really glad you did...
05-23-2017, 06:30 AM   #2
DEmberton
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I'm really glad I did it. I couldn't have carried on like that.
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Diagnosed May 2014
20cm Terminal Ileum and Ileocaecal resection July 2014
125mg Azathioprine
05-23-2017, 06:45 AM   #3
B-chole
 
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I had to have an emergency reduction surgery when I was 17.(3 1/2ft removed) The hardest part for me is dealing with malnutrition and the fact that I can't be away from a restroom. My surgery was 18 years ago. I was completely in remission for 12 years. I don't regret having the surgery because I was on deaths door
05-24-2017, 02:48 PM   #4
The Real MC
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No regrets on my resection. The alternative would had been far worse.
05-25-2017, 02:38 AM   #5
rorho19
 
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Yeah I guess I have to realise that I am getting to the point where there is no alternative, I have dropped from 14 1/2 stone to 13 over 3 years and being 6 foot 3 tall 14 stone was thin. Guess I'm going to starve to death if I don't have the surgery.

RR
05-25-2017, 03:58 AM   #6
DEmberton
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I'm a 6 foot tall man, and I went from about 13 stone to 9 over 2 years, and was seriously skinny, as well as anaemic and pretty ill. After surgery I gained 2 stone back in the first 2 months just eating normally. Amazing really. It would have been nice to have stayed about 12, but now I'm back to 13 and feeling like I need to lose some flab.

I would avoid things getting that bad.
05-25-2017, 06:45 PM   #7
Layla
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Yes, I'm glad I had the surgery. Like you I had trouble eating due to strictures and I was very pleased to avoid emergency surgery which would have been inevitable if I hadn't had the planned operation.
This way I could make sure I was as fit as possible and could also choose the surgeon so I could get laparascopic surgery rather than open. It was a no brainer for me.
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Layla
Diagnosed with UC in 1994, CD in 2014, "IBS" in between
Lactose intolerant, IgA deficient and Arthritis.
Resection due to strictures in 2014
Currently taking: amitriptyline, zinc, multi vitamin, b12 shots, Vit D, B complex, magnesium, calcium, Psyllium and the occasional iron infusion.

Previously on Remicade, Humira, Prednisone, Azathioprine, MTX, Pentasa, Asacol, Salofalk
10-19-2017, 03:42 PM   #8
Nadene
 
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To Layla,

Was you surgery laproscopic? I am having the laproscopic surgery in a few weeks, for the same exact reasons, it would be inevitable for me also. Did you have to do a low residue diet, and what to expect after surgery.
10-19-2017, 05:52 PM   #9
Layla
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To Layla,

Was you surgery laproscopic? I am having the laproscopic surgery in a few weeks, for the same exact reasons, it would be inevitable for me also. Did you have to do a low residue diet, and what to expect after surgery.
Yes it was, that's why I preferred a planned surgery, rather than as an emergency which would have been open surgery most likely.

No I didn't need to do anything diet wise, before or after. I didn't even need to clean out my bowels before surgery!

Good luck with it all.
10-20-2017, 04:15 PM   #10
Nadene
 
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I don't have to clean out my bowels, but I do have to do a clear liquid diet the day before. How was your recovery?
10-20-2017, 06:55 PM   #11
Layla
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I don't have to clean out my bowels, but I do have to do a clear liquid diet the day before. How was your recovery?
I was off work for about 2-3 weeks and then did some work from home. I was pretty weak the first week but after that I started improving rapidly. I can really recommend to get as fit as possible before the op, it makes a big difference in recovery time!
10-21-2017, 06:56 AM   #12
Nadene
 
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I already eat right and work out, what else do you recommend, to prepare, to get fit?
10-21-2017, 06:55 PM   #13
Layla
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I already eat right and work out, what else do you recommend, to prepare, to get fit?
Seems you're already doing all the right things!
The only other thing I remember doing was preparing soups and other easy to digest things in advance and freezing them, to use for after the op in case I couldn't be bothered to cook. That was very helpful, it made life much easier just defrosting something.
10-22-2017, 06:56 PM   #14
lgpcarter
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I had a laparoscopic resection last July and am really glad I did. I had been dealing with partial obstructions for a year, and I couldn't stand it anymore and scheduled the surgery.

It went very well, 25 cms removed of mostly large bowel. In hospital 5 days (took a while to poop!) and back to eating normally only a couple of days out of surgery.
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Diagnosed in with Crohn's in large and small bowel in 2000. Fistulas followed soon after.

Seton placement (2) and fistulotomy December 2013. Setons removed July 2014. 3 more setons June 2018.

Laparoscopic Right Hemicolectomy July 2016, 25 cms removed

Current meds: Entyvio every 4 weeks, Vitamin D 2000 IU

Previously: Remicade, Simponi, Pentasa, Sulphasalazine, Entocort, Stelara, Methotrexate, Prednisone, Imuran, Humira, Cipro and Flagyl.
01-23-2018, 02:16 PM   #15
bleigh
 
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I too am having my first resection surgery but my Doc tells me I will have a stoma bag for 3 or more months afterwards. They have not told me how much they plan to take out. I feel like this may be one of those situations where they don't know until they get in there. I don't think I read anything in your posts about a stoma bag. So I guess a stoma bag isn't always used. Did your Doc ever mention a stoma bag?
02-08-2019, 05:19 PM   #16
musikmaker1
 
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Hey all, new to this forum. Looks like a lot of good people here, all of us suffering in one way or another with this (as I call it) "disease from hell".

I'm scheduled for resection the end of this month Feb 28th, I think the ileum is where the stricture is. Was diagnosed with Crohn's when I was 25 yrs old, I'm now 60, and this is my first surgery for my intestines. I did have a fistulectomy many yrs ago.

I'm really not looking forward to this. In all the years I have had Crohn's, I've been able to eat a good variety of foods, as long as I stayed with low residue diet. About 3 yrs ago I started having a lot of trouble with fats, and any food that had a substantial texture to it, like beef or steak. Things seemed to get worse and worse since then, and my diet is consisting now of mostly fish and ground chicken. It was really strange because it seemed to happen suddenly. One day I was enjoying a pretty wide variety of foods, even steak and some low fiber veggies, then the next day I had a flare up. Usually I can recover in a few days, but this time it didn't happen, so I knew something was different.

I'm hoping this surgery to get rid of the stricture is going to open up my diet again. No grown man should have to eat like a bird. Can anyone offer any advice? I've got a few questions for the surgeon, but probably won't get much diet advice from him. What do they give you in the hospital to eat right after surgery the first few days? I would think mostly liquid diet, or at least low res? How long before you are allowed to eat solid foods again?

Even though I had a kidney removed 5 yrs ago, I'm kinda worried about doing this one, since I've managed to avoid intestinal surgery all these years, but I think the possible alternative of getting a blockage and emergency surgery seems worse, so I'm going with the lesser of two evils. The surgeon mentioned that a lot of people that get this surgery wish they had done it years ago because they felt better afterwards. That sounds good, but I've also heard some people end up needing further surgeries because they got this surgery.

Thanks for listening, much appreciated. I have more life to live, so I'm going to fight this **%$% disease all the way! God bless all of you, be healed!
02-08-2019, 08:28 PM   #17
Merv S
 
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Good luck MM,
Hopefully, there will be a dramatic improvement post op.

I had my resection about 6 years ago. The procedure was done by laparoscopic surgery. One incision through the navel and a further two either side of the lower abdomen. A bit painful, but nothing that could not be handled.

Post-op, a liquid, then a soft food diet until you have a B/A. I did have a few complications, but that was my problem, which you're unlikely to experience.

Was it worth it, yes, but I still have structures and need a further metre of ileum resected. There are risks from other comorbidities, which I won't bore you with. Plodding along on 2/12 Sterlara and at 74, can't complain! Not entirely a cure, but generally I felt considerably better for quite a while.

As in your case, I was a late onset candidate at the age of 58, following an appendectomy that morphed into peritonitis.

PS Having the surgery is not going to increase the likelihood of more strictures. They may or may not develop as the disease progresses. When I had this operation, I mentally prepared myself for the possibility of an ileostomy.

Again, Good Luck.
02-09-2019, 06:56 AM   #18
DEmberton
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Good luck.

If I remember correctly: my surgery was on the Monday; on Tuesday I just sipped water, on Wednesday I was able to drink tea and I think they gave me some jelly. But on the Thursday I was able to eat a tuna sandwich, which took me about an hour because I had zero appetite, but suddenly felt much much better, and then later on a proper meal (as proper as you get in hospital - chicken and something). And the Friday I'd had BM of sorts and they let me go home.

The surgeon said I could eat whatever I was comfortable with. His only suggestion was to avoid any really big meals for a couple of weeks.

I wish I'd gone to the doctor years before; been diagnosed years before, and had the surgery years before. I cannot say enough how much healthier I've been in the last 4 and a half years.
02-09-2019, 06:15 PM   #19
Merv S
 
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I think there is some confusion here! MM posed the question, not me. I'm Merv, not 'Good Luck'!
Cheers,
M
02-10-2019, 03:05 AM   #20
DEmberton
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I think there is some confusion here! MM posed the question, not me. I'm Merv, not 'Good Luck'!
Cheers,
M
My "Good luck" was for MusikMaker, but I'll wish you good luck too Merv.
02-10-2019, 04:28 AM   #21
Merv S
 
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QUOTE=DEmberton;1017019]My "Good luck" was for MusikMaker, but I'll wish you good luck too Merv.[/QUOTE]
Not a problem, Mate. Good Luck to you too. I was brought up ( more like dragged up) in Kingston upon 'Ull. Eyup , me duck!
Cheers,
Merv
02-12-2019, 05:14 PM   #22
musikmaker1
 
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Hey thanks guys, I appreciate the support! I am getting a little nervous about all this. I guess that's to be expected, considering. It's just that I seem to get a mixed bag of opinions on this, probably because we're all different and it's not a cut and dry scenario for everyone, so the outcome post surgery is going to be a little different for each individual case. In general though, I've noticed most comments seem to indicate an "improved" quality of life after this surgery, so that's promising.

I had a good friend who had this done many years ago, I guess he was in his 30s then. He can eat just about anything now, and has never needed another surgery, so he's one of the lucky ones I guess! I'm hoping for the same.

Merv, sounds like you had a rough go of it when you were in the hospital, but again, you seem to think the surgery improved your quality of life at least, so that is encouraging, thank you for replying. Hope you continue to live as healthy as possible for a long time to come! Nice to know that the surgery doesn't promote further strictures, hopefully this is the only one for me. They didn't say they saw any additional blockages when they gave the test results, so....

DEmberton, you had a very good result with your surgery, that is also very encouraging to me, thank you also for the reply. And thanks for the rundown of what each passing day was like in the hospital, that helps a lot because those are the things I get concerned about, ie...what will I be able to eat, how long will I be in the hospital, etc....so thanks for the info! (lol, yeah I've eaten that "chicken and something" before, not food for the fittest by any means!) It sounds similar to how it went for me when I had the kidney taken out, it was rough for a couple days for sure, and as Merv mentioned there was some pain too. The first few days my abs felt like I had just done 1000 sit-ups at the gym or something! I could barely sit up in bed, so I suppose it's a similar situation with this one. Oh well, here we go again, not looking forward to it, but praying for improvement on the other side of all the trauma.


Can you tell me how long it was before you felt like you could start experimenting with foods that you were unable to eat prior to surgery? I'm just curious because I'm thinking I'll likely be uneasy about trying to begin eating foods that I've missed eating for so long now, like pizza, red meat, veggies, foods with a little fiber, etc....well you know what I mean. Were you guys able to expand your diets at all beyond the foods you ate before surgery that you knew to be "safe" foods, or is your diet still pretty much restricted?

Last edited by musikmaker1; 02-12-2019 at 05:47 PM.
02-12-2019, 07:16 PM   #23
Merv S
 
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Hi MM,
In answer to your question, once I returned home I resumed my normal diet. My discharge was delayed due to a complication, so I guess it was about four days post op until I was able to eat what I wanted.

As you quite rightly state, we are all different in terms of what we can or cannot digest. To be honest, both my wife and I are curry freaks and cooking various dishes has been my hobby for decades! It really doesn't matter to me what I eat, bland food will produce the same outcome as a hot Madras curry! I use a lot of root ginger in my dishes, and as you probably know this rhizome does have anti-diarrhoeal properties. One of the first things that you are taught at a Jungle Warfare course is to chew raw ginger for outbursts of 'Dehli Belly'!

It comes done to individual choice really. If what you can eat is not causing too much discomfort other than the usual bloating and unfortunate flatulence then so be it. Although Stelara has greatly improved my situation, there are still times when I need to take anti-diarrhoeal medication, although far less frequently than before.

I can't speak for the others that have had, as I, decades of CD, but I can tell you that the avoidance of stressful situations is paramount. Philosophically, one has to arrive at the realization, that despite the'inconvenience' (sorry) there is still a life to be led. At moments when I get a bit down, I consider all the people around that are so much worse off than me!
Merv
02-13-2019, 01:37 PM   #24
DEmberton
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Hi MusikMaker,

I think I was pretty much eating normally as soon as I got home from hospital. In fact I was intentionally eating more than usual because I wanted to regain the weight I'd lost (which didn't take long). Being able to enjoy eating again was really great.

On the subject of pain, yes there was pain, but it wasn't as bad as what I'd been experiencing before surgery. They gave me codeine and paracetamol to take home, but I only needed the latter and then only up to about 10 days after surgery. I'd get the odd stab of pain after that, mainly when standing up, or getting out of the car, so you will need to take it easy. They told me I couldn't work for 6 weeks, and shouldn't drive for 4. Well I gave it two weeks, and then as much out of boredem as anything went for a tentative drive, felt fine, and then went back to work the next day.
02-14-2019, 06:11 PM   #25
musikmaker1
 
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Went for my pre-admission testing today, so it won't be long now.
I'm not liking that I can't drive for 4 weeks! I think when I had my kidney removed they told me about 2 weeks no driving and I was on the road in a few days, so I guess we'll see. I don't see much difference in sitting on my couch or sitting in my car, but I guess there must be a reason, maybe the turbulance?

DEmberton, sounds like you really had a very good result with your surgery, that's awesome, I'm hoping for similar results. So you increased the volume of intake of food pretty soon after your surgery. You weren't afraid if you ate too much that you might damage the area of the surgery?

Merv, about what you said...."root ginger in my dishes, and as you probably know this rhizome does have anti-diarrhoeal properties"...I didn't realize that it helped with that symptom. I usually make my own bone broth and I do add Ginger root powder to it, as well as sprinkling on some other foods. In earlier years with CD I used to have loose BM a lot, and still do now, but it seems to have changed to more bouts of mild to strong constipation in the last couple years. I know Ginger is very good for you, I'm wondering if it has any bearing on my symptoms. I'm not into Curry myself, but I do like mildly spicy foods now and then, but the past couple years I've had to back off, maybe I'll be able to enjoy some of that post surgery. I used to use Cayenne pepper but have backed off that as well.

Your comment about stress Merv...."I can't speak for the others that have had, as I, decades of CD, but I can tell you that the avoidance of stressful situations is paramount. Philosophically, one has to arrive at the realization, that despite the'inconvenience' (sorry) there is still a life to be led. At moments when I get a bit down, I consider all the people around that are so much worse off than me!".... Man, you really said a mouthful of truth there! I know first hand about how quickly stress will aggravate the CD symptoms. Just about every significant flare up has been after a stressful time in my life. This time is no different. I've noticed now that I have to avoid it at all costs. I agree, it does help to consider those worse off that me, and yes, there is a life to be led, and I hope to get back to some semblance of a more normal life soon.
02-18-2019, 03:46 PM   #26
DEmberton
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DEmberton, sounds like you really had a very good result with your surgery, that's awesome, I'm hoping for similar results. So you increased the volume of intake of food pretty soon after your surgery. You weren't afraid if you ate too much that you might damage the area of the surgery?
Not really. I did feel a bit anxious about something going wrong in general, but not really related to eating. After months of being a sick person I really wanted to feel normal again, and being able to eat properly was a big part of that.
02-18-2019, 05:55 PM   #27
musikmaker1
 
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Yeah I'm getting those same concerns about something going wrong, but I don't really have a choice but to get this fixed.



So, would you say that you've been feeling "normal" again?
03-15-2019, 05:28 PM   #28
musikmaker1
 
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Hey guys, had my surgery, spare you the details, but I was in hospital for a week. They took out the stricture, but also found an abscess that had to be drained, and a fistula needed repair, so they took a small piece of colon as well. Needless to say recovery was/is pretty brutal. Now gradually trying to get my system to stabilize again, and making diet adjustments. I barely ate or drank anything for almost a week in the hospital. Only been home a week, so it's gonna take time. Have to say this recovery is much more difficult than when I had my kidney removed.

Here is a very encouraging 17 minute testimony, worth watching, and worth considering his advice to bike it....

https://www.youtube.com/watch?v=KTT7...ature=youtu.be
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