any experience with colon removal surgery?

[karliebug]

My 18 year old daughter has suffered from ulcerative colitis for about 10 years. She at first responded well to medication but the last couple of years she has had many flares. The dr. is encouraging her to think about surgery to remove her colon as he feels it would improve her quality of life. She doesn't want to do it because she is scared and because she thinks it may threaten her future fertility. Has anyone had this type of surgery that can shed some insight for her to help make this decision?

 

[CoP Luv]

We are almost at this stage with my husband. He could not get off of his meds and we found some research that showed a possible link with eliminating all gluten foods from the diet and people have had decreased symptoms. We are going to try this before making a decision on the next step. I would talk to your doctor about other alternatives!

 

[BeckyScott]

CoP, it may be the Specific Carbohydrate Diet ("Breaking the Vicious Cycle" by Elaine Gottschalk) I don't follow it exactly but do let it influence me, if that makes any sense. Especially if I am flaring up. No gluten, no dairy except for her special yogurt, no processed sugar. Anyway, the book came out several years ago so most libraries should have it. It's pretty extreme, but has been successful for many people.

 

[mechurchlady]

I have celiac and each time I have gluten my stomach is damaged so I cannot absorb minerals, vitamins, fats and other stuff. I have heard of the author's theories that when a person with IBD, colitis and other stomach damage eat certain carbs they cannot absorb them. Elaine's daughter was born about 1952 and had ulcerative colitis. At the time psychiatrists blamed parents for the disease in kids.

http://books.google.com/books?id=Ge...cious+cycle"&ei=c-KRSYegIorONdDVxJwK#PPA14,M1
read the first 20 or so pages of this book. Page 14 explains that the damaged cells of the small intestine are damaged and cannot absorb stuff. In time a build up of unabsorbed carbs leads to bacteria growth. For protection the body adds mucus. By eliminating the carbs that feed the bacteria and reducing mucus forming foods like milk one can give the body time to heal. In time the immune system stops alerting and triggering because of the damage and in time the body heals and then can absorb the carbs.

From my viewpoint that is what I do basically. I am on a dairy free diet due to allergies. I avoid chips and some carbs because of my allergies. I am reading her list of things not to eat to see what may I should try taking out of my diet for a while.

http://www.breakingtheviciouscycle.info/
She is like the ladies here in that she fought the doctors and went to a person with the right answers then went back to school and got a educated when most ladies are knitting booties for their grandchildren. I like her approach and she seems to have sound reasoning behind what she does.

 

[jda327]

A friend's daughter just had surgery to remove her colon. The biggest issue for her is nutrition at this time and the need for a hospital type bed for her caregiver to be able to change the bag.

 

[TheDisneyGirl02]

My little cousin had it (OK...my little cousin is a freshman in college now) done 5 years ago and she is 100% better now than what she was before the surgery. It was a long recovery but I'm sure she is glad she had it done.

Good luck to your daughter.

 

[ToddyLu]

IF it is true ulcerative colitis and not Chrohn's disease than this surgery would cure your daughter of UC. They would creat an ileostomy (opening from the small intestine to the outside of the body), requiring her to wear a pouching device on her abdomen. However in the past 20 years they have almost perfected continent diversions where the surgeon removes the colon. Make a pouch out of ileum and keeps it inside the body, then the way it is constructed the patient would use a catheter, insert it into the open beneath the bikini line and drain the stool. This is called a Koch pouch. There are also continent diversions made where they creat a pouch out of ileum and connect it to the anal opening. THe pouch matures and collects the stool. Then several times a day when the pouch is full the patient goes to the bathroom, sits on the toilet and defecates normally---no pouch needed on the abdomen, not catherter needs to be inserted....this is called and ileal-anal anastomosis or "J" pouch. I am a registered nurse who specailizes in wounds, ostomies and continence. We were formally known as Enterostomal Therapists.

None of these procedures affects sexuality or prevents pregnancy. The baby simply moves the intestine over when it needs the room- and the mom just empties the pouch more often or maybe can't hold as much stool and has to use the restroom more often.

Please, please know that there are nursing professionals who specialize in this area alone---I am one of many. If you need to PM me, maybe I can get you the name of one in your area. If not then please contact Emory University--Woodruff School of Nursing and speak to the Director of the WOC Nursing Program so they can help you get the info you need.

 

[ToddyLu]

As far as nutrition goes. She will continue to have her small intestine where the nurtrients are absorbed. THe colon is used by the body to basically absorb water and remove waste. People with an ileostomy have to watch what they eat because certain foods like peanuts, celery and other fibrous foods can get lodged in the ileostomy opening causing a food blockage. The blockage can be irrigated out of the body. The trick is for the patient to introduce these foods slowly and one at a time in the diet following them with plenty of fluids--she can have the foods she enjoys, just make sure that she chews them well and drinks afterwards. People with ileostomies are also more susceptable to dehydration because the small intestine has more liquid contents that come out, more frequently during the day--so staying hydrated would be improtant.

She would be taught to perform self care and be independent with her own care, no need for a hospital bed unless there were other medical conditions that qualified her for one. Have an ostomy would not quaify her for a hospital bed. Barbara Berry is a actress who had an osotmy and Ralph Benershe (I just murdered his last name) also had an ostomy and he played in the NFL. I am not violating HIPPA since these people have made themselves know to the world as ostomates. Take it from me--there are enough of these procedures done to give me a full time job and I live in Mississippi....

 

[littlewitch34]

I am 20 and have had 2 out of 3 surgeries that I needed to combat UC.

Please PM me if you want to chat. Please. I want to help.

 

[mdsouth]

We are almost at this stage with my husband. He could not get off of his meds and we found some research that showed a possible link with eliminating all gluten foods from the diet and people have had decreased symptoms. We are going to try this before making a decision on the next step. I would talk to your doctor about other alternatives!

I agree, you should definitely try the gluten free diet FIRST!

My husband's cousin had the surgery when he was young. Due to this, he has had troubles (social and physical ones) that you could possibly avoid through a change in diet. Remember, once the surgery is done, it cannot be undone. So, check out alternatives and especially the change in diet first.

So many, many people have had great success with a gluten free diet.

 

[WDWFOREVER]

I had to have my colon removed in April 2006 following a very severe flare up of Ulcerative Colitis. I was supposed to be having a reversal surgery after about 3 months but then developed insulin dependent diabetes. This was caused by long term, high dose, steroids which I had prior to the surgery. Because of various other problems, I decided late last year that I would never have the reversal surgery and I made the decision to stick with my bag. I find the bag has made my life so much easier - no more dashing about trying to find restrooms and the pain that goes with it. About 11 inches of rectum/anus had been left after the first surgery which would be needed for reversal surgery. Once the decision had been made that I would not have a reversal, my surgeon recommended that this final 11 inches of plumbing should be removed as the colitis was still active in that portion of my body. I had my rectum and anus removed in April 2009 and I can't begin to tell you how much better I feel for it.

Of course, what you have to bear in mind is that I am now 50 years old, far different to a young 18 year old. It would be wrong of me to profer an opinion on whether she should have it done as she will have different reasoning criteria than I had. However, for me, it is the best decision and one that allows me to live as normal a life as possible.

Sadly, the diabetes has wreaked havoc on my body and I also suffer from diabetic neuropathy - a painful condition in my feet. It is nerve damage caused by high dose steroids and immuno suppressants which gave me artificially high blood sugars, despite the best efforts of me and my surgical/medical team to control my levels.

Jackie