# Terminal ileum resection survey



## ny_sooner

My wife will have a TI resection of about 7-10 inches including valve. She is currently in the hospital with a drain and taking antibiotics to combat a large internal abscess in her lower pelvic area probably  caused by a fistula.  To help her get a better grasp on what to expect after the resection , I have the following questions.  I am looking for only after first resection.  

1) how much of terminal ileum was removed?

2)Was your crohn's the fistulizing type or the regular inflammation type.

3) What were your symptoms that led to the resection?

4)Did you ever have a internal abscess or fistula prior to resection?

5)After the surgery,  how long were you symptom free before CD returned and did it return to the same site or a different site?

6)Were you taking any maintenance drugs after surgery to help stay in remission.

7) How long did it take for normal BMs to return, if they ever did?

8) was your surgery open or lathroscopic?

9) did you have a lot of pain and how long before you felt good again


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## DustyKat

Both of my children have had ileocaecal resections. My daughter was undiagnosed at the time of her emergency surgery and although I do believe she also had an abscess/s her complications are not clear cut.

My son however was diagnosed at the time of his surgery and has the same complications as your wife so I will primarily answer in response to his experience.

*1) how much of terminal illium was removed?*

Sarah: 69cms (27 inches)
Matt: 28cm (11 inches)

*2)Was your crohns the fistulizing type or the regular inflammation type.
*
Both have fistulising

*3) What were your symptoms that led to the resection?*

Sarah: Vomiting, severe abdominal pain, sepsis. 
Matt: Psoas abscess with fistula originating in the terminal ileum. 

*4)Did you ever have a internal abscess or fistula prior to resection?*

Sarah: I believe Sarah and it had ruptured along with her bowel. 
Matt: As above. He had a pigtail drain in for 3 months prior to surgery while they waited for the inflammation to go from acute to chronic.

*5)After the surgery, how long were you sympton free before CD returned and did it return to the same site or a different site?*

Sarah: Has been in remission since her surgery which will be 6 years on the 10th July.
Matt: Has been in remission since his surgery on the 7th April last year.

*6)Were you taking any maintenace drugs after surgery to help stay in remission.
*
They are both on Azathioprine (Imuran). 

*7) How long did it take for normal BMs to return, if they ever did?
*
They have both been left with bile salt malabsorption diarrhoea. Sarah worse than Matt. I do believe both have had some natural take up in that time. They both use psyllium with to control it with great effect. 

*8) was your surgery open or lathroscopic?
*
Sarah: Emergency surgery so open.
Matt: They didn't think they would be able to do laparoscopic but they tried any way. It was unsuccessful so they went to open. As it was they found another abscess and fistula that had adhered to the abdominal wall, hence why laparoscopic wasn't able to be continued with.

*9) did you have a lot of pain and how long before you felt good again*

Sarah: Was in very poor condition prior to surgery so I won't discuss her. 
Matt: Had pain on movement until about the beginning of the 4th week post op. It was at this point that everything turned around. He could move freely and psychologically he was a different boy. He was doing light training at soccer by 5 weeks and also driving distances at this point too. He did return to school 3 weeks post op. Really from 4 weeks on he was he went back to the boy he was well before he got sick. I think it was at that point that I realised just how long the disease had been present without any of us ever being aware of it, it was such an insidious thing. 

Hope that helps!

Dusty. xxx


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## ny_sooner

Thanks for the in depth reply, it helped a lot. The thing that scares me is the Bms. Right now, even though she has CD in the illium and the fistual and abcsess, prior to going into the hospital for the abcess, her BMs were 100% normal since her diagnosisi in Jan. She has been in a lot of pain, but never once had a problem with BMs.  The surgeon says since he is only taking 7 o8 inches, BMs should be normal and no problem.  This gets me scared now.


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## DustyKat

My two never had issues with BMs prior to surgery either. Matt doesn't have huge issues with it and as I said I do think his has continued to improve. 

This is just the story of my two. I know there are others here that have had the same amount of bowel removed as Matt and have continued to have normal bowel motions post operatively. The main thing is, if your wife does have issues with chronic diarrhoea it can be dealt with and it won't impact on her ability to get out and do things. Both of my children go to university full time, have part time jobs and lead very active lives outside of study and work, my daughter with politics and my son with sport. 

It really will be okay hun, honest...:hug: 

Dusty. xxx


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## Slim Johnson

ny_sooner said:


> My wife will have a TI resection of about 7-10 inches including valve. She is currently in the hospital with a drain and taking antibiotics to combat a large internal abscess in her lower pelvic area probably  caused by a fistula.  To help her get a better grasp on what to expect after the resection , I have the following questions.  I am looking for only after first resection.
> 
> 1) how much of terminal illium was removed?
> 
> I think I lost all of it, along with my cecum, sigmoid colon, and part of my ascending colon.
> 
> 2)Was your crohns the fistulizing type or the regular inflammation type.
> 
> Yes.
> 
> 3) What were your symptoms that led to the resection?
> 
> Multiple fistulae, stenosis, obstruction, inflammation, abscess, cobblestoning.
> 
> 4)Did you ever have a internal abscess or fistula prior to resection?
> 
> Yes.
> 
> 5)After the surgery,  how long were you sympton free before CD returned and did it return to the same site or a different site?
> 
> 6)Were you taking any maintenace drugs after surgery to help stay in remission.
> 
> Not medically confirmed, but around two months.
> 
> 7) How long did it take for normal BMs to return, if they ever did?
> 
> Normal would be a relative term, but about a month before things started looking normal.
> 
> 8) was your surgery open or lathroscopic?
> 
> Open.
> 
> 9) did you have a lot of pain and how long before you felt good again


Yes, and about two weeks.


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## nogutsnoglory

ny_sooner said:


> My wife will have a TI resection of about 7-10 inches including valve. She is currently in the hospital with a drain and taking antibiotics to combat a large internal abscess in her lower pelvic area probably  caused by a fistula.  To help her get a better grasp on what to expect after the resection , I have the following questions.  I am looking for only after first resection.
> 
> 1) how much of terminal illium was removed?
> 
> All of it.
> 
> 2)Was your crohns the fistulizing type or the regular inflammation type.
> 
> Regular.
> 
> 3) What were your symptoms that led to the resection?
> 
> Pain and obstruction.
> 
> 4)Did you ever have a internal abscess or fistula prior to resection?
> 
> No.
> 
> 5)After the surgery,  how long were you sympton free before CD returned and did it return to the same site or a different site?
> 
> 3 months different area.
> 
> 6)Were you taking any maintenace drugs after surgery to help stay in remission.
> 
> Humira but allergic to it.
> 
> 7) How long did it take for normal BMs to return, if they ever did?
> 
> They never did.
> 
> 8) was your surgery open or lathroscopic?
> 
> Lap.
> 
> 9) did you have a lot of pain and how long before you felt good again


Very soon after surgery.


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## Slim Johnson

nogutsnoglory said:


> Very soon after surgery.


Yeah, my version of Crohn's is pretty aggressive. :ymad:


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## bumble_bee

1) How much of terminal illium was removed?

_2.5 feet/76cm_

2)Was your crohns the fistulizing type or the regular inflammation type.

_regular inflammation type_

3) What were your symptoms that led to the resection?

_constant pain, diarrhea, weight loss, failure to improve on any medications_

4)Did you ever have a internal abscess or fistula prior to resection?

_internal abscess - this is actually what directly led to surgery, not because I had complications or anything with it but because it got me speaking with a surgeon and we both decided surgery was my best option to get my life back_

5)After the surgery, how long were you sympton free before CD returned and did it return to the same site or a different site?

_about 6 years, returned in the same area_

6)Were you taking any maintenace drugs after surgery to help stay in remission.

_Pentasa for about two years (but I don't think it did much) and then nothing_

7) How long did it take for normal BMs to return, if they ever did?

_I don't remember exactly how long but they did return to normal_

8) was your surgery open or lathroscopic?

_open_

9) did you have a lot of pain and how long before you felt good again

_I remember when I woke up after surgery I was in a lot of pain that I confused with nausea but then after that, not that I recall so much. I had a morphine pump and remember the nurses telling me to use it more as I wasn't going to 'win any prizes for not using it and being in pain' but the reason I didn't use it was I wasn't really in pain! I was back to work in 8 weeks but I'd say I felt pretty good by about week 4_

Hope this helps!


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## spcwife23

Hi ok i just had my surgery so some of the questions ill try to answer to the best of my ability

I has 10cm taken out ...

Regular inflammation.

I had narrowing from when i was flaring and the doctors took a year to say it was crohns.

No i never had either one thank god...
That i cant answer since i just had mines, but the pathology shows no crohns or inflammation..

Right now while im healing im on entocort and pentasa, but next month i will be on humira and imuran...

I was shock but mines start back turning normal last week my 3 rd week after surgery..

mines was both started out lapro but had to go open they foubd i had 4 hernia

Umm it was painful as hell i didnt have the epidural i had the pump.. trust me every 6 mins i press that button lol im 3 weeks out and im feeling alot better thab the first week..you just gotta remember everyday it will get better.


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## Lisa Marie

Hi I am a crohnes patient in Remission but I have narrowing if the intestines..they want to remove a part of my small intestine along with my appendix then respecting it.. What's your take on my situation should I do it? Can I end up worse than I am?  And how big are the scars?


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## Slim Johnson

Lisa Marie said:


> And how big are the scars?


About this big:






This was taken on the day I was discharged.
Here is what it looks like today:


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## Lisa Marie

Thank you slim Johnson.. Mine is supposed to be part liposcopic part open I'm Soo nervous..was your emergency? See I'm in remission the only reason I should o it s because there is narrowing of my intestines andi can't go to the bathroom much so that's why this is a hard decision


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## spcwife23

Wow they really cut you long, mines was under my belly button to a little lower but not as far as yours went... I told them the only way im ok with doing the surgery is if they never use staples , so they use the steri strip, they starting to fall off now and the outside is healed up but inside will take longer to heal.


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## CLynn

ny_sooner said:


> My wife will have a TI resection of about 7-10 inches including valve. She is currently in the hospital with a drain and taking antibiotics to combat a large internal abscess in her lower pelvic area probably  caused by a fistula.  To help her get a better grasp on what to expect after the resection , I have the following questions.  I am looking for only after first resection.
> 
> 1) how much of terminal illium was removed?
> 
> Just over a foot.
> 
> 2)Was your crohns the fistulizing type or the regular inflammation type.
> 
> Inflammation, no fistulas.
> 
> 3) What were your symptoms that led to the resection?
> 
> Partial obstructions every so often. Pain, bloating, little to no bm's.
> 
> 4)Did you ever have a internal abscess or fistula prior to resection?
> 
> No, I didn't.
> 
> 5)After the surgery,  how long were you sympton free before CD returned and did it return to the same site or a different site?
> 
> 7 years, made it till this last fall. Returned to the same area.
> 
> 6)Were you taking any maintenace drugs after surgery to help stay in remission.
> 
> Made the decision to not use maintenance drugs.
> 
> 7) How long did it take for normal BMs to return, if they ever did?
> 
> A few months, as normal as mine get, not pre Crohn's normal.
> 
> 8) was your surgery open or lathroscopic?
> 
> Both
> 
> 9) did you have a lot of pain and how long before you felt good again


 Felt tired for a few weeks, about the same with pain, but the pain was pretty managable.


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## Manzyb

Lisa Marie, Are you feeling bad?  

If you have narrowing from inflammation then nothing will fix it but a surgery.  Or, have they talked to you about stricturoplasty?  Where they go in there and open it up a bit more?  It's not a permanent fix, but may help alleviate some of your symptoms.


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## Lisa Marie

Manzyb I am currently not in pain just often gets backed up and it is uncomfortable. I am narrow due to scar tissue even though I nobility remission th only wy to take care of it is surgery..but i have to say they  haven't talked to me about a stricturoplasty..what's that?


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## JMC

1) how much of terminal illium was removed?

About 30cm of terminal ilieum/cecum/ascending colon

2)Was your crohns the fistulizing type or the regular inflammation type.

fistulizing

3) What were your symptoms that led to the resection?

Years of fatigue, head aches, diarrhoea and generally feeling unwell most of the time.  I had a bad flair and obstruction which caused me to have a MRI scan which confirmed I needed surgery.

4)Did you ever have a internal abscess or fistula prior to resection?

I had internal fistulas (shown on barium meal) as early as 2005 (probably earlier)

5)After the surgery, how long were you sympton free before CD returned and did it return to the same site or a different site?

Surgery was in March 2012, still symptom free

6)Were you taking any maintenace drugs after surgery to help stay in remission.

150mg Azathioprine

7) How long did it take for normal BMs to return, if they ever did?

I had my ileostomy reversed on 27th June, BMs are still getting back to normal, but improving every day.  While I had a stoma, I actually passed the most "normal", firm stool I can remember during my adult life from the residual that was in my bowel after surgery!

8) was your surgery open or lathroscopic?

Open, they could not get the large mass out laparoscopically

9) did you have a lot of pain and how long before you felt good again

I had a lot of pain for 3 to 4 hours after surgery, once that was under control I had no pain at all.  Within hours of the surgery, I knew I was feeling better and three months down the line still significantly better.


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## ny_sooner

JMC,,,thanks for the info,,,I am just curious why you had a  ileostomy ?


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## JMC

ny_sooner said:


> JMC,,,thanks for the info,,,I am just curious why you had a  ileostomy ?


Because I had two fistulas originating in my ileum that penetrated my sigmoid colon which resulted in two small sections also being removed. Because I would have had 3 joins, my surgeon felt it was safer for me to have a temporary stoma. 

You can see the details of what was taken out of me during surgery in this thread.


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## Slim Johnson

Lisa Marie said:


> Thank you slim Johnson.. Mine is supposed to be part liposcopic part open I'm Soo nervous..was your emergency? See I'm in remission the only reason I should o it s because there is narrowing of my intestines andi can't go to the bathroom much so that's why this is a hard decision


The surgery was not an emergency procedure. The reason the scar is so long is due to having my sigmoid colon removed along with a right hemicolectomy, and the removal of my terminal ileum. 

My feeling is that if I had another surgeon do the surgery, I would have had temporary stoma. Dr. Kim told me that he took a chance on me, by skipping the stoma, and reconnecting everything in one procedure.


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## JMC

Slim Johnson said:


> My feeling is that if I had another surgeon do the surgery, I would have had temporary stoma. Dr. Kim told me that he took a chance on me, by skipping the stoma, and reconnecting everything in one procedure.


I would agree.  We seem to have had very similar problems and open surgery and I ended up with a temporary stoma. 



---
I am here: http://tapatalk.com/map.php?0mmk2m


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## Slim Johnson

The first surgeon I consulted told me that I would have wound vacuums, on top of the laparotomy. I have no doubt that had he done the procedure I would have had the temporary stoma as well. 

Dr. Kim was the former Chief of Surgical Oncology at the University of Utah. He is freakin' AMAZING!!! Here is a link to one of his blurbs.


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