Large Intestine Removal w/Permanent Ileostomy

[angdee1975]

I have had Crohn's Disease since age 14. I'm 34 and am having a proctoloectomy in 2 weeks ( removal of large intestine, rectum, anus) and currently have an ileostomy. I have had the ileostomy for 18 months or so and have been doing okay w/it. I've been told I'll be in the hospital for 7 - 10 days and that the incision might be the toughest part to heal. I'm not knowing what to expect with having ALL of the stuff removed. I'm not going to hook up the small intestine/stoma to the rectum because of my Crohn's Disease being so severe and active. I recently had a colonoscopy to see about reversing what was supposed to be the temporary ileostomy and my intestines were so narrow they couldn't scope me and in the process the air that they tried to put in to see when they tried to scope me caused my colon to perforate and all the air was trapped in my upper body, putting a ridiculous amount of pressure on my lungs and chest so I couldn't breathe. I was hospitalized for a week and took about 5 weeks to recover from that. They told me that they best thing I could do would be to remove EVERYTHING since I'm at a high risk for cancer with the crohn's so active even w/the ilestomy and there's now no way for them to scope me.

I don't know if I'll lose a lot of weight and if I'll have trouble with getting dehydrated or how I'll be now. I already don't use the large intestine as I"m diverted with the ileostomy. I'm also concerned because I have a small hernia to the right of my stoma and this is the 2nd time in a year and a half that I've had one. I'm worried that i'll keep getting them. They are going to move the stoma lower down to see if that helps. I know recovery is supposed to take about 4 -5 weeks. They told me I'm supposed to be on leave that long and hope that I'm fully healed in that time to go back to work. I really hope this is the last time I'm in the hospital. I'm so used to little things cropping up all the time that I don't know what to expect and want to stay positive about this procedure, but am aprehensive.



Let me know if anyone has any advice. I read the other posts however my situation is a bit different.  The ileostomy helped for sure. I'm so nervous about the surgery though because I don't know what to expect. Weight loss, healing trouble w/the incision? I was very thin when I had hte ileostomy, but have since put some weight back on after being able to eat again with the ileostomy, but don't know how much weight I'll lose iwth this surgery. If i'll be able to eat the same or be easily dehydrated.

Let me know if anyone out there has any similar experience with the ileostomy and the large intestine removal.

[TrudieC]

I had UC and had a total colectomy about 16 years ago.  A little over a year later they closed the temporary ileostomy and I had another surgery to create a rectum out of my small bowel and connect into my anus.  I know you can't have this with the Crohn's but the nutritional and weight issues and healing will be the same.

I was the same age as you when I had this done and I healed very well.  You will be very weak initially.  I lost a bit of weight initially, largely because of not eating much with the operation and taking a bit of time to build up.  But it was only about 5 lbs. or so.  Drinking is terribly important and ensuring you get enough sodium, potassium and magnesium in your diet.  Without a large colon you don't absorb these as well and without them you can feel very tired and achy.  Plan to include foods that give you these and if you get leg cramps quickly eat bananas, gator-ade or potato chips.

They will initially start you out with foods that will eliminate the liquid stools such as oatmeal, marshmallows, applesauce and rice.  Over time you will be able to handle almost anything but you will need to work up to it.  I can now eat spicy foods and beans.  After all those years of not being able to put on weight I actually have an excess weight problem now and actually smile when I think of it since it means I am healthy (just need to exercise).  

Good luck with everything.

[marymagdeline]

Hi.  First of all, I applaud you for your positive attitude in spite of all your going through.  I am having my colon and rectum removed in a few weeks, and I will be wearing a bag permanently.  I'm 47.  I have studied which nutritients are needed by men, and which are needed by women, and I've already started taking them in liquid form every day (I mix them in a glass of soymilk with 1/2 cup of blueberry's).  If you'd like to know what ones they are, just ask (and tell me if your a man or a woman.)

Also, make sure you post this question in the Gastroenterology section.  You can post it in the GI forum that costs $16 and a doctor will answer your questions, along with lay people.  Or, you can post it in the free GI forum and lay people will answer you.  A guy named Morecombe answers people in the free forum often.  He is very knowledgable and has had the same surgery.  Good luck!

[cka58]

hi mary  
i am a 50 yr old male and i have a j pouch,, cant seem to get the right nutrients,,always tired,,seems like nutients don t stay in my system long enough for my body to absorb,, going to bathroom   8 - 12 time s per day  ,,any advice on diet that you were giving to angd1975

PS Considering going back to permanent bag,,,to many problems,i have had j pouch12 yrs

thanks chuck
cka58

[TrudieC]

Chuck, have you had a complete blood work up done?  You need to determine if perhaps you are deficient in iron or B12 and do ensure you are getting enough potassium and magnesium.  Are you upping your salt content (necessary) and drinking enough non-caffeine fluids.  Don't give up until you know why.  I go 8 - 10 times a day and could reduce that if I chose to adjust my diet but I do enjoy my spicy things, sugar, caffeine and red wine so live with the frequency but I am definitely getting my nutrients and do take a good multi-vitamin every day.

[eastmancrew]

Hello, My brother-in-law is as i write this going through the surgery to remove his large intestine and make his ileostomy permanent. He Has had Crohns Disease for about 18 years now and he is only in his early forties. He has been at times gravely ill fromt the crohns and its many complications. He has had the ileostomy for about 12 years I think... So enough was enough and today they are doing the surgery that we hope will be life changing for him. Were all just very concerned as his body usually doesnt handle surgery very well and the days to come after are very unerving. So I will keep you posted as to how this goes for him. which might help eliminate some questions.