Large Intestine Removal w/Permanent Ileostomy

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.

[pkay1]

I am nearly 50 now and have had most of my small intestine removed since 2002 when my small intestine perforated and had 3 operations in a space of a month. I have had an ileostomy ever since.

The first thing I asked my specialists was is the Crohn's a dietary disease and they said no.Well they are way off the mark.

I have put in countless of hours of research into the causes of not only Crohn's, (which I have been diagnosed with)  IBS, IBD,cancer and most diseases.I have bought books on these diseases, and have discovered that main stream medicine has no idea on what causes disease and how to actually help us.

To my surprise I recently discovered that just about every disease is curable.But not with medication. Most diseases occur due to our diets. How can people expect a pill (which only just masks the problem) to treat diseases when they are consuming  thousands of toxic substances in the food that they are eating?.People that have changed over to a healthy raw food diet have made miraculous recoveries from all sorts of diseases including cancers', (that doctors had declared incurable)  diabetes, to Crohn's and Colitis.

Watch  how six obese and unhealthy people with diabetes ( diagnosed by doctors incurable as diabetes is) were cured in just 30 days when they went on a raw food diet.It is  a documentary called Simply raw reversing diabetes in 30 days.Here is the trailer on YouTube for this documentary  http://www.youtube.com/watch?v=bzdhBo4pbgE

I recently bought an excellent book called "Self Healing Colitis & Crohn's '  by David Klein who was advised to have his colon removed due to Ulcerative Colitis who not only recovered but has since helped thousands of sufferers recover. This book is so informative and goes into the physiology of why disease comes about and how to regain your health.

I highly recommend that you watch these series of videos on YouTube ( this is the first one).   http://www.youtube.com/watch?v=X23o3RzJuPo&playnext_from=TL&videos=8pmvuPvubIw    A talk given by Max ******'s daughter Charlotte on the healing effects of a healthy diet that her father (also a doctor) had used to save hundred of so called incurable patients beginning almost 100 years ago (with many of them on record and still alive today after many decades after having been sent home by doctors to die),and how congress had put a halt to a planned talk that was to be given by him to them on how his simple diet worked.The pharmaceutical industry took care of that.

Another great German doctor who healed many terminal ill patients (mostly cancer patients) was Johanna Budwig.Google her name and you will find how this extraordinary woman helped thousands of patients recover using simple dietary changes.

Mainstream media doesn't report these easily accessible facts as the pharmaceutical industry controls your FDA (in the US) and most media networks ,and have no desire to help cure anyone.They are there for profits only.Just like banks that don't care if you lose your house.  

As I said earlier, I have spent hours on my pc to come across this useful information.Having this disease myself I want to reach as many people as possible so that they can get the other  information (that has been suppressed from mainstream media) and to have an alternative to allopathic mainstream medicine  to truly be able to get their lives back on track.

[pkay1]

I have just joined and noticed that the name ****** has been blanked.I hope you can see it on this post.

[pkay1]

Let's try again   G  e  r  s  o  n    

[TrudieC]

I've been reading the Lupus Recovery Diet and it talks about different studies and has many testimonials from people with Lupus, rheumatoid arthritis, and fibromyalgia that went into remission by eating a low fat vegan (no animal foods including eggs and dairy) diet with some excluding wheat and corn as they can also cause issues.  This greatly reduces inflammation and stops the intestines from being permeated by the foods that then cause issues.  It does make a lot of sense.  I'm not sure if I'm ready to do this though.  I think if I got to the point where I needed a lot of steroids or chemotherapy drugs I would give this a try.  

[debono236]

i had an ileostomy and my rectum closed up and have a bag.
I had the operation in 1974 when I was 40. I am now 77 very fit play tennis to a high standard. I have 14 grandchildren and one great grandson.
I had Crohns and the opertaion got rid of the problem  i have never looked back.

[BeckyBoo1985]

Hi I'm 28 had crohns for 22years. I have ileostomy for 7 years which has completely changed my life!for the better. I have had several perianal abscesses and fistulas the most recent being an agonising fistula which had to have a new seatin put in. After having discussions with my surgeon I have decided to have the proctoloctomy. I am also having my bag redone as it has prolapsed for the 2nd time and I have to change it every day or sometime two or three times a day! I'm worried as I saw my plastic surgeon the other day and I'm not to clear as to what exactly they will be doing. I'm worried that my bum will be really deformed and that it will take long time to heal as whenever I have surgery I get infection :( if any one who has had it done let me know how they got on an what to expect I would be very grateful.