Ostomy: Adapting to life after colostomy, ileostomy or urostomy

My husband was diagnosed with bladder cancer in 10/2011. He had neoadjuvant chemo for several months, his major surgery including formation of the ileal conduit for ostomy in spring 2012. Lots of complications, and ureter revision surgery in summer 2013. He’s been on the kidney transplant list for a couple years now, though is currently inactive on the list because his GFR is at 24...higher than when he was first places on the list.

@darin Welcome to Mayo Connect,

I am sorry to hear of your longstanding problem with colitis. I can understand your concern regarding surgery.

We do have a discussion group on Connect that deals with ostomies I would encourage you to read those posts. Here is the link to those discussions, https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/

If surgery seems to be your only option, will you be getting a second opinion?

Yes. I am trying to see my doctor in mayo to see if there are any other options. I currently have been seeing a gi doctor at sanford in fargo

I'm glad to hear that, @darin. While I'm sure each individual case is different, I've noticed that a lot of people who have colostomies, etc. tend to have it reversed after 6 months or so. It is not always permanent.

We also have a discussion group on colitis, here is the link, https://connect.mayoclinic.org/discussion/recurring-diverticulitis-colitis/. I would like to invite @suez and @lisabeans who have both discussed colitis treatments and meds they have taken.

I would like to know how this all works out for you. Will you keep in touch?

I have no input/experience with colostomy. I take Lialda for my colitis and it seems to be helping in that my flares are not as painful and intense as in the beginning. And, of course, I watch what I eat. Sorry not to be of more help. Good luck.

Wondering if theres any good reports of this. Have had colitis for 5 years and tried alot of drugs but the only one that worked was simponi. Unfortunately I was diagnosed with skin cancer after being on it. So after 3 surgeries to remove my melanoma and glands from my armpit, I am on entyvio and it is not working very well. So now I am worried I may need this procedure and I have a very physical job, and worried I will have to carry a bag the rest of my life. I'm only 43 and wondering if anyone has some advice or maybe something like this.

Hello,
Is there research, professional opinion or any personal experience regarding doing a Keto Diet with an ieostomy? I worry about not getting enough fiber and staying well hydrated. Thank you

Welcome to Connect, @mrigs.

You may notice that I moved your message to this existing discussion titled, "Ostomy: Adapting to life after colostomy, ileostomy or urostomy”
I did this as I thought it would be beneficial for you to be introduced to the many members who are talking about much of what you are experiencing.
If you click on VIEW & REPLY in your email notification, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences.

Here’s some information from Mayo Clinic about "What is a good ileostomy diet?” that you might wish to view.
https://www.mayoclinic.org/tests-procedures/j-pouch-surgery/expert-answers/ileostomy-diet/faq-20322775
May I ask if you would share more about why you've chosen to follow a ketogenic diet with the ileostomy, @mrigs?

Thank you @kanaazpereira for responding so quickly and guiding me in the right direction. Honestly, I’m only doing the Keto Diet to support my husband because he wanted to jump start his own weight loss. He understands if I can’t do it fully with him. I just wasn’t sure if ketosis was a good idea for me, although I’m sure I’d benefit from just cutting back on carbs and sugar.

Four years ago I was discharged from the hospital without a third of my GI track. The sigmoid was gone and most of my ileum had been removed because my pelvis had received radiation in the 80's. Dead and scar tissue had been removed from the GI track that had been radiated.

I now live with a forever ostomy. Without the ileum my diet means limited nuts, seeds and no skins. Fruits have to be peeled, so I eat canned or dried. Tomatoes need to be peeled and seeded. Beans are iffy, corn has to be white young corn. No corn on the cob or yellow corn, my body cannot process it. Animal flesh is hard to process, I can do eggs and yogurt. Yogurt is my go to food, without the added fruits. If I want fruit I will add it myself, without the sugar. With an ileostomy foods are not fully processed so I take pills or shots to make sure I get the vitamins and minerals I need.

If your husband wants to loose weight the best way is not a diet but a forever lifestyle. It will be heavy in fruits and vegetables, low in fat, sugar, and sodium. Pasta and animal protein are limited to a small portion of your intake. Beef should be limited to once a week or every other week, fish, chicken or turkey can fill in the rest of the week.

When my urine is strong that means I am not getting enough water. Water should always be our beverage of choice, minimum 8-8oz glasses each day. Everything else has something added to it that is not good for the body.

If you can accept that you have a new lifestyle and it will be forever, your body will be happy. If your body is happy you will be happy. Good luck.

mlmcg