Ileocecal resection (first time)

[Evenstar]

Dear forum members,

I hope everything is going well with you! And if not I hope things get better soon. I’m a Crohnie from the Netherlands, and in a few weeks I’m getting surgery to remove my terminal ileum, the ileocecal valve and a little bit from the large intestine. I’m really looking forward to it because I can’t go to work anymore and since December / January I’m not able to eat decent meals (only liquids and yoghurt) and although the pain is a lot less since I’m not eating any solid foods, it’s still very bad sometimes.

I have to say I’m lucky that the affected area is only in my terminal ileum, and not in large parts of my bowels. The only bad luck is that I’m allergic or not responding well to the available medicines, only Humira was going well for 4/5 years. Now I’ve built up too many antidotes for that.

I have a few questions I was hoping you could maybe help, because I’m quite curious what to expect after surgery and what your final step to surgery was:
- It appears on the MRI I have an affected terminal ileum with wall thickening and edema, I have to say I was expecting much worse due to the pain etc. - but was it also indicative for surgery if all medicines already failed in your case(s)?
- The surgery is laparoscopic, doctor says I will need 4-6 weeks to recover. Is that a good indication?
- Is there a good chance I will remain in remission, even without medicines?

Thanks a lot for your help!!!
Xx

 

[Flap Jackson]

Hi Evenstar,
I can't answer your first question, or your third question for that matter. As far as taking time off, I recently went through laparoscopic ileocolic resection. My surgery was on August 1, and I went back to work on September 10. I work in a restaurant, and am on my feet for 10 hours a day. I started out the first week working about half the day, and slowly increased it by the end of the week. Six weeks was plenty for me. If you're not on your feet all day, four weeks may be good enough.

As far as going in remission, all I can say from my experience is that I didn't take any meds from August 1 until I went on Remicade the end on October and I felt good. Since I've been on Remicade though I've been working out 5 days a week and feeling great most of the time.

I did post kind of a journal on this forum of what I went through with my surgery (in the surgery section) that might give you some insight of what to expect.


Good luck with your surgery, it's pretty simple with minor pain. Just remember to walk often afterwards.

 

[Evenstar]

Thanks a lot for your reply Flap Jackson!
It’s very reassuring. I have an office job so maybe I can slowly go back to work after 4/5 weeks, that would be great, I’m lonely at home.

Remicade is great, unfortunately I developped allergic reactions so can’t use that anymore. I will probably attend a trial for the medicine Vedolizumab. 50/50 chance I will get the medicine or either the placebo, and it’s only for 6 months, but hopefully worth the try.

Thanks a again for your reply!! It’s so good to hear you are in remission since then. I will try to walk as much as possible indeed.

 

[SLakes]

Hi Evenstar,

I had my terminal ileum / valve and about 60cm of small intestine removed in Nov 2017. My Crohn’s had developed a ‘tennis ball sized growth of fatty scar tissue’ around the terminal ileum plus scarring along the small intestine. I’m male and was 58 at the time of surgery

Because of the size of the growth my surgeon decided I would have full open surgery rather than ‘key hole’. Of course the prognosis is a longer hospital stay and recovery for this than a laparoscopy however it couldn’t have gone better.

I believe the typical hospital stay for laparoscopy for terminal ileum removal is 3-4 days and up to a week with open surgery. This is how mine went

Saturday - Stop eating and take a preparation formula

Sunday - Into hospital late morning, had an epidural fitted into my spine for pain relief after the surgery, had surgery, woke in recovery room. No apparent pain. A ‘dull’ sensation if anything. Moved to intensive ward. Visit from surgeon who asked if I could try walking! I said I’d go for it. So with a frame and a nurse either side I managed to get up and walk maybe 20m to the corridor and back. Tiring. They had me do this once more that day.

The worst part is being attached to a three wheeled stand containing your epidural pump and a catheter dangling between your legs. Erm! Interesting!

Monday - moved to an observation ward. Still only numb sensation around midrif. The surgeon insisted I get up and go for regular short walks, with assistance. Catheter removed on surgeons insistence

Tuesday - moved to standard ward. Encouraged to sit in chair rather than bed. Demon surgeon now bullying me to walk a hundred steps around the corridors preferably every hour or so. Still attached to epidural wheely stand

Wednesday. - visit from surgeon in morning who suggests I have epidural removed (the dose had been gradually reduced and I wasn’t experiencing pain) after lunch. This was done, another visit from surgeon who said I could go home if the physio nurse approved. She gave me so e exercise tests. I was given the option of staying another night or going home so I went home. So just over three days

I was very stiff at home Wednesday night but quite a bit better Thursday. The surgeon had insisted that the more I move the better it will be and I was walking a few hundred metres out of the house within a few days and going further each time

It’s hard to remember now but I think I was driving after about two weeks. I’d been a passenger after a week.

So I can say with some conviction that the worst thing is the natural anxiety of surgery. As for Crohn’s symptoms - all gone for me since the surgery. Fingers crossed!

What I didn’t know about before was - I had to self inject with an anti-coagulant for four weeks. Not sure but I don’t think this applies to laparoscopy surgery. I never thought I’d be able to inject myself but it was a doddle. Just a fine short syringe specially designed for ‘do it yourself’.

This next part is vital. My GI team didn’t tell me this and it should be compulsory. If you have your terminal ileum removed you will need to take a medication after to stop you having diarrhoea. Without a terminal ileum valve you will get bile malabsorption which creates an excess of fluid in your large colon and as a consequence, diarrhoea

Fortunately there are drugs that deal with this very effectively which are all variants of cholestyramine. They come in powder form and tablet form. The powders trade names are Questran and Questran Lite and the tablets Cholestagel - this is what UK NHS prescribe.

Cholestyramine was developed to reduce cholesterol before statins came along so now there’s a beneficial ‘side effect’ when taken for bile malabsorption

So I started having diarrhoea after the surgery and called my specialist nurse who casually said something like, “oh! We can trial you on powders which may help”.

“Trial”? “May help” Nonsense! Something like 97% of terminal resections result in bile malabsorption so they know perfectly well you will need this. The good news is the powder work, instantly.

Your GI team will probably advise you about bile malabsorption before hand but I think it’s best to know so that you can mention it if they don’t

I prefer Questran powder. I take two sachets a day and it doesn’t really matter when you take them although I prefer mornings. If you take other medication it can prevent absorption so take other meds five hours after Questran

Questran Lite is finer powder but doesn’t dissolve in water as easily as Questran. It’s annoying to use so I get Questran if I can (they’ve been having supply issues recently and sometimes I’ve had to take the Lite).

I’ve also tried the tablets and they work just the same. You have to take six of those

In the UK the NHS has a slight preference to give you Questran, probably because it’s cheaper at about £10/month as against £100ish for the tablets. My GP is happy to prescribe either but I’m happy saving the NHS money where I can so go for the cheap option

Best wishes for the surgery. I’m sure you’ll be fine and can look forward to being symptom free for years to come!

 

[Evenstar]

Wow very detailed reply thanks a lot SLake!! I will indeed be around 3-4 days in the hospital, because they don’t have to remove a lot of my small intestine. When I researched this forum I also read a lot about diarrhea afterwards the removal of your ileocecal valve, my GI and surgeon didn’t mention that so I will certainly bring it up myself. If those meds work properly, I will be happy to take them. So far I only had 1 flare with severe diarrhea, the other ones (including this one) contains obstipation so that differs a lot lol.

Thx so much! This is again reassuring for the future!

 

[SLakes]

You’re welcome. Let us know how you get on!

 

[Evenstar]

Well, this went really well. Beyond my expectations. They removed about 10-15 cm, a little bit more because from the outside of my bowels they couldn’t see very well were the Crohn ended, but when they pinched the surrounding fat it began to bleed quicker and apparently that’s a sign. The first two days were quite awful, vomiting, lots of pain and nausea. But from day 3 the improvement was amazing, I started eating a bit and began to walk a lot more and I could sit for hours in a chair. I’m already at home for a few days and I can eat normally again, like solid foods, LOVE it! I hope this will only improve more and more in the coming weeks. Thanks for all the support again!!

 

[lgpcarter]

Sorry you have to have surgery, but you will feel loads better after! I had a very similar surgery - ended up taking 25cms out with the valve, though I had more large bowel removed (6 cm small, 19 large, I think). It was laparoscopic and went well.

I had mostly failed all medications before my surgery in July 2016. Surgery was because the obstructions I was having were due to scar tissue, though, so not medicine would have helped that.

Yes, 4-6 weeks is a good estimate. I was off work for 4 weeks and probably should have take another week or so to get my strength back fully. I was in the hospital for 5 days - had to stay until I had a good poop and pain was under control!

You should talk to you doctor about medication after, but I strongly suggest you take something. Have you tried Entyvio or Stelara?

Dear forum members,

- It appears on the MRI I have an affected terminal ileum with wall thickening and edema, I have to say I was expecting much worse due to the pain etc. - but was it also indicative for surgery if all medicines already failed in your case(s)?
- The surgery is laparoscopic, doctor says I will need 4-6 weeks to recover. Is that a good indication?
- Is there a good chance I will remain in remission, even without medicines?

Thanks a lot for your help!!!
Xx

 

[lgpcarter]

Hahah! I see now that I was too late with my last reply, but glad it went well!

Well, this went really well. Beyond my expectations. They removed about 10-15 cm, a little bit more because from the outside of my bowels they couldn’t see very well were the Crohn ended, but when they pinched the surrounding fat it began to bleed quicker and apparently that’s a sign. The first two days were quite awful, vomiting, lots of pain and nausea. But from day 3 the improvement was amazing, I started eating a bit and began to walk a lot more and I could sit for hours in a chair. I’m already at home for a few days and I can eat normally again, like solid foods, LOVE it! I hope this will only improve more and more in the coming weeks. Thanks for all the support again!!

 

[Evenstar]

Haha thanks! No worries your reply is still very helpful, because of the medication advice. I hope you are fine atm and I’m going to do a trial with either Entyvio or a placebo (for half a year). Entyvio isn’t that common to give in the Netherlands but I hope they might give it to me permanently after the trial. Never heard of Stelara but will bring it up! Thanks!

 

[OlegSh]

Hi all, i also want to make terminal ileum resection. I want to ask you:

1. Did you have chronic fatigue? Did you get better after surgery?

2. Did you have a SIBO? Did you get better after surgery?

3. How did you manage to check that inflammation is only in the terminal section?
Thanks

 

[Evenstar]

Hi all, i also want to make terminal ileum resection. I want to ask you:

1. Did you have chronic fatigue? Did you get better after surgery?

2. Did you have a SIBO? Did you get better after surgery?

3. How did you manage to check that inflammation is only in the terminal section?
Thanks

1) I did not have chronic fatigue after the surgery, after 3 weeks I felt great. I could eat what I wanted, and my general condition also improved very quickly.
2) Every morning I received visits from several doctors, so I guess I did.
3) During the surgery they checked each inch of my intestines, and also during previous research (MRI, echo, colonoscopy) they only detected inflammation and a little bit of prestonic dilatation in the terminal (ileum) section.

 

[SLakes]

Hi all, i also want to make terminal ileum resection. I want to ask you:

1. Did you have chronic fatigue? Did you get better after surgery?

2. Did you have a SIBO? Did you get better after surgery?

3. How did you manage to check that inflammation is only in the terminal section?
Thanks

1. I had chronic fatigue and severe weight loss before. Much improved after surgery and gained weight. If the terminal ileum is removed you will likely have low B12 absorption and need intramuscular B12 injections quarterly. Low B12 can cause fatigue

2. I didn’t have SIBO

3. I have recently had my 1 year post op check by ultrasound which can see the entire small intestine. MRI can also be used or colonoscopy to check the site of the section