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Crohn's Disease Forum » Surgery » Strictures & Obstructions » Getting surgery to remove structure in ileum!


06-28-2014, 08:11 PM   #1
BenM
 
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Getting surgery to remove structure in ileum!

First off, I am new to the forms and wanted to know how others have recovered from having apart of there small intestines removed.

Some general info about me: I'm a 23 year old male who was diagnosed with Crohn's disease at age 21, had my birthday in a hospital when they found out that I had a giant abscess on my ileum, boy was that fun! Then after 3 months of antibiotic's, through the IV. I was able to get a colonoscopy and was diagnosed with Cronh's disease, there was a lot of bruising in the ilieum. Two years later, just recently I had another colonoscopy. This time it revealed that a good amount of scar tissue had replaced the bruising. Now that scar tissue is obstructing my blow movements and making really hard to live effectively. I get pain almost all the time whenever I eat stuff. Witch really sucks and I'm always sleepy, like right now typing this post is tiresome. Anyhow my GI doctor says I need surgery to remove about 4 to 6 inches of my ilieum. I already have an appointment with the surgeon and I am both excited and scared about the surgery. What I would like to know is if anyone else had to get the same thing and what there recovery from the surgery was like, did overall quality of life get better? If so was there any regressions? Or how did you or they feel after recovery? About how long did it take to recover from surgery? Also I'd be happy to join in on any focus groups regarding Cronh's disease within the Huntsville, AL area. I just wanna talk to others who have it like I do.
06-28-2014, 08:32 PM   #2
DJW
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Hi Ben and welcome.

I've had a couple of resections due to strictures. My last one was a year ago last May.

Keep in mind I'm older. Recovery is longer. They could due mine laproscopicly. I was in hospital 4 days. Took a couple months to recover. It's important to keep the pain under control. You'll heal quicker.

After surgery I was given ice chips. My bowel started working quickly which is why I was out in 4 days. Usually it's 7-10 days for me.

I had a pain pump to manage pain. Within a couple days all the tubes were out ( catheter and iv). No NG tube - you may have one but it goes in when you're asleep. Fairly easy coming out. Just weird.

Hope all goes well.
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06-28-2014, 08:33 PM   #3
vtfamily
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Hello Ben.

My son has had surgery twice to remove strictures. We tried to resolve with medications for quite some time (about a year) first, with no improvement. The (laproscopic) surgeries were very helpful. Recovery was very quick, a few days in the hospital and a few more at home. He was back to his usual routine in about a week.

He also started a new med each time. The first surgery was followed by Remicade, which worked for 18 months. Next came Humira, which didn't help much. The second surgery was followed by Stelara, which is working great...17 months and counting!

Remicade and Humira are highly effective meds for most people. It is important to have a post surgery treatment plan for long term success.

Good luck to you.
Cheryl VT
06-28-2014, 08:57 PM   #4
BenM
 
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Thanks for the quick reply's! From what my GI doctor said, I should be able to have laproscopic surgery, witch is good.

@DJW I was in the hospital for about 2 weeks when I initially found out I had crohn's. Was NPO, no food or drink, for the whole 2 weeks. So they gave me a picc line to feed me through the IV. I wouldn't be surprised to get another one after surgery. Doctor said I'm young so should heal quickly. I'm hoping to recover in about 4 weeks. I just got a job and would like to start it soon.

@vtfamily I'm on Cimzia and from what my doctor says, you have to stay on this until a cure comes along for cronh's. I can't tell if it does anything but i suppose that's because of the structure always causing me pain. Just know that it blocks the TNF protein to stop inflammation. I too tried medication for 2 years until we found out about the scar tissue, so the only way to fix it is to remove it. Also how old was your son when he had surgery? You said he recovered in about a week or two. I'm 23 so just trying to get a good idea of how long I might take to recover.

Thank you again for talking to me!

Edit:
One more thing, before surgery did you have to take the prep stuff that you would have before a colonoscopy? I hate that stuff...

Edit2: Fixed typo with TPN to TNF.

Last edited by BenM; 06-28-2014 at 09:40 PM.
06-28-2014, 09:04 PM   #5
DJW
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I don't have much intestine left so I was put on clear fluids the day before. The surgery prior to that (2 summers ago) was emergency surgery for a perforation. No prep there.

You may need to do prep but I can't say for sure.
06-28-2014, 09:07 PM   #6
BenM
 
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I don't have much intestine left so I was put on clear fluids the day before. The surgery prior to that (2 summers ago) was emergency surgery for a perforation. No prep there.

You may need to do prep but I can't say for sure.
Prep... I figure that I would need it, will ask my surgeon when I see him. How much intestine have you had removed? I know that you can have up to 2-3 feet removed before having to go on a special diet.
06-28-2014, 09:19 PM   #7
DJW
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I've got a little over a metre left. Thankfully what I have is absorbing nutrients well. But I can't have more surgery. At this point don't need a special diet. Dehydration is always a concern.
06-28-2014, 09:33 PM   #8
vtfamily
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Gus is 14 years old. Dx at 6 yrs old. First stricture surgery at 9 yrs old (ileum, about 18" of super mangled, multi-strictured intestine). Next stricture, duodenal and inoperable, resulted in emergency perforation surgery following balloon dilation attempt at 11 yrs old...followed by duodenal bypass surgery and implant of a g-tube. Most recent event, ileosecal stricture surgery (last year at 13 yrs old), removed about 18".

Cizima, Remicade and Humira are all variations of anti-TNF meds. If Cizima stops working, one of the others might work for you. The new direction is anti-adhesion meds like Tysabri, Stelara and Vedolizumab. Gus has been on Stelara for about 17 months and is doing GREAT! No new strictures and disease under control, for first time in 10 years!!

Also, Gus eats what he likes...no special diet.

As far as prep went, he just had a clear liquid diet the day prior to surgery.

Cheryl VT
06-28-2014, 09:34 PM   #9
BenM
 
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I've got a little over a metre left. Thankfully what I have is absorbing nutrients well. But I can't have more surgery. At this point don't need a special diet. Dehydration is always a concern.
OH man my heart is out to you. And I hope than never happens to me!

Last edited by BenM; 06-28-2014 at 09:57 PM.
06-28-2014, 09:39 PM   #10
BenM
 
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Gus is 14 years old. Dx at 6 yrs old. First stricture surgery at 9 yrs old (ileum, about 18" of super mangled, multi-strictured intestine). Next stricture, duodenal and inoperable, resulted in emergency perforation surgery following balloon dilation attempt at 11 yrs old...followed by duodenal bypass surgery and implant of a g-tube. Most recent event, ileosecal stricture surgery (last year at 13 yrs old), removed about 18".

Cizima, Remicade and Humira are all variations of anti-TNF meds. If Cizima stops working, one of the others might work for you. The new direction is anti-adhesion meds like Tysabri, Stelara and Vedolizumab. Gus has been on Stelara for about 17 months and is doing GREAT! No new strictures and disease under control, for first time in 10 years!!
That's good news! And yes I meant to say TNF not TPN in my last comment. I might take longer than 2 weeks to recover but I feel like I'll recover in 4 weeks, of course that's all speculation at this point. Will update my status later, propably after I have the surgery.
06-29-2014, 05:07 AM   #11
DJW
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Thanks. With drugs like remicade and Humira treatment options are much better.
06-29-2014, 02:03 PM   #12
BenM
 
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Yeah I'v heard that there is a lot of reaserch going into crohn's as of late. Who knows there might be a cure to it in the next ten to twenty years!
07-10-2014, 05:16 PM   #13
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I had about 6 inches of the terminal ileum removed about 27 years ago, when there was no way to diagnose except surgery and no treatment for Crohn's except prednisone, which might have killed me if it was any of the other nasty things they suspected.

Besides the usual post op problems - I got an incisional hernia few years later - active Crohn's almost always starts up again from the surgical cut, so medical treatment before it starts to scar is important, even if you feel OK.
07-11-2014, 01:05 PM   #14
BenM
 
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Good to know, just had my surgery and now recovering in hospitol. My gut kinda hurts. Hmm clear liquid diet is great (rolls eyes). Lucky for me i haven't had any complications yet so should heal nicely.
07-11-2014, 02:55 PM   #15
Daisy123
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My last resection was open surgery just because I have had quite a few previous ops. I was on the enhanced recovery plan. No prep, fluids the night before and then two high energy drinks before the op. I had PCA although I was offered an epidural instead. I was in six days and it took me a while to recover but was back at work in two months. I am now on a mainly vegan diet which seems to be helping. You should be able to eat pretty much anything. Make sure that you continue treatment after surgery.
07-11-2014, 05:11 PM   #16
BenM
 
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I will keep up my treatment, never want to go through this again. Well know if i get discharged tomorrow.
07-18-2014, 01:27 AM   #17
vtfamily
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I will keep up my treatment, never want to go through this again. Well know if i get discharged tomorrow.
How are you doing post surgery?
07-18-2014, 08:04 AM   #18
BenM
 
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It's going well. I'm at home now and can now eat mostly anything, within reason. I'm showing signs of a fast recovery and will probably be able to drive in a weeks time. I can eat ice cream without pain now!!!! Havent had one flare up since I had the surgery, so it was worth getting it. Thank you for all the support!
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