Do they usually take part of your colon with crohns in the ileum?

[sdexter]

I met with a surgeon yesterday. I thought they were just going to take out the strictured part of my small intestines, so I was surprised when he said he was going to take the cecum too. Is this "normal"? It scares me to think of how my digestion will be if he takes that, too. Any other stories of ileocolectomy? He also mentoned the possibly of an ileostomy bag. Would that just be temporary, and how often is that needed? This is more complicated then I thought it would be, and I am starting to get cold feet.

 

[JThorn676]

I had emergency surgery (didn't know I had crohns until they opened me up) but they removed my cecum along with other stuff. I don't know what my "normal" is supposed to be... I do know that my stools are still pretty loose but my endoscopy/colonoscopy/blood work always comes back normal.

I don't know much about ileostomy because I haven't had one.

good luck with everything. When is your surgery?

 

[DustyKat]

Hi sdexter and :welcome:

If the last part of your terminal ileum is affected, which it sounds like it is in your case, then it is very common to resect the caecum as well.

The problem with a resection in this area of the bowel is the differing size between the small bowel and the caecum, The caecum is a pouch like structure at the start of the large bowel and it is not possible for a surgeon to connect the small bowel to it as the size difference is too great. Also they need to be able to connect two healthy ends of bowel.

An ileostomy is usually mentioned as a possibility because all the imaging in the world doesn't necessarily give an accurate picture of what they may find when they get in there. If there is too much inflammation present they will often do a temporary ileostomy as a bowel saving measure. What I mean by that is, to have successful surgery you must join two unaffected ends of bowel together. To do that with extensive inflammation means taking out a much larger amount of bowel. So to avoid that they will create a stoma and so allow the bowel to rest and the inflammation to settle. They then go back in 3-6 months later and reverse the stoma, that way you only have resected what absolutely has to be taken out.

Both of my children have had the surgery you are facing and neither ended up with a stoma. I don't know how often it actually happens but under controlled circumstances, as in not emergency surgery, and with the surgeon confident of what he will likely find it would be on the rarer side.

Bile salt malabsorption diarrhoea is a very real possibility post surgery but for most people they are able to control it with either prescribed medication or something like psyllium. Both of my children suffer with this to varying degrees but they have it well in hand and it does not affect their quality of life unduly. I personally believe there is some natural take up over time and bear in mind not everyone has this problem following surgery.

The other thing you will have to be mindful of is your B12. The terminal ileum is the only area of the bowel that it is absorbed. You must ensure that you have your levels checked regularly post op to stay on top of what may become a deficiency. I would also recommend that you also have your Iron Studies, Folate and Vit D checked at the same time.

Good luck and welcome aboard!

Dusty. xxx

 

[sdexter]

Wow. That is all such excellent information. I guess the whole thing just kind of threw me. My doc says it would be a good idea to get this done before it becomes an emergency, since it appears I have scarring as opposed to inflammation from years (30+) of bouts, and not being on meds for the majority of the time. I thought I was being a trooper, but it turns out I was doing myself more harm.
I didn't schedule the date when I was at the surgeon's office, but I really feel better about doing so now.
Thanks!!

 

[Feather]

I had this surgery last year. I had my terminal ileum removed, as well as the cecum (only about 25cm/10in total). I didn't require an ileostomy, and my surgery was not emergency, but very urgent (I spent a week in the hospital beforehand for an obstruction, and for a few days between that and my surgery I was on a liquid diet). I also have not experienced differences in digestion -- with that part of my intestine removed, I have been much more nourished because I don't have the stress of a severe stricture anymore. My stools have also been normal; I haven't experienced more loose stools since surgery (which could be the result of a small amount of intestine being removed). I was also very worried about my surgery, but it ended up being the best decision for me -- my quality of life and health is greatly improved. Best of luck!

 

[highlandsrock]

Removal of the terminal ileum is pretty common in Crohnies. I had elective surgery almost exactly two years ago and that's the bit that got taken away, about 140mm. I also had an ileostomy to give my large bowel a chance to recover and that has since been reversed. Because it was elective surgery it gave my wife and I time to get prepared mentally for what lay ahead and by the time the operation came round I was positively laid back. As Feather commented - you can get very worried about having surgery but the outcome is worth it.

One thing I have found very therapeutic, throughout the whole process, is writing a diary of what you are going through and how you are feeling. I have since been back though it, done some editing, added some photos and decided to join the wonderful world of blogging. I've organised it into a series of pages covering each stage of the process so it can be read in small bites. I would recommend trying something like it yourself, if nothing else it gives you something to do whilst sitting in a hospital bed and you can pass your experience on to others who are about to follow the same route. It helps demystify the whole thing.