Colon or No Colon: Seeking Advice from Fellow Ileostomates

Merry Christmas to all.

I would like to ask as many of you fellow ileostomates if you still have your colon, or have you had it removed?

I have had GI issues for a long time, and do not have a colon. The theory here is a part of the small bowel will function as a colon, however, the bacteria are different in the colon than in the small bowel. I am being told that is my problem with the cramping etc I experience on a daily basis.

I also have been told that I could not get rid of these bacteria or it could affect my immune system to the point of death.

I am wondering if anyone else has this problem, and what you are doing about it?

Thanks to everyone in advance for your replies.

Elaine

Hi Elaine, I've had an ileo for 35 years. No colon or anus anymore, total proctocolectomy. I was told by my doctor to eat yogurt every day to help the good bacteria in the gut.

If you're having a permanent ileostomy, the colon should be removed to prevent any problems in the future. I did have my rectum and anus left in after my ileo. The rectum was removed a few years later, and for some reason, the doctor decided to leave my anus in. Luckily, I had few problems from it, but the best procedure is to remove all.

Hi Elaine, I have a loop ileostomy and still have my colon, but it has been bypassed, so it is not functioning at the moment. I do know that good gut bacteria is important, that you don't want to get rid of it. I don't understand why gut bacteria would be causing cramping. I was not told to eat yogurt or anything specifically for gut bacteria, but it seems like a good idea, or taking a good probiotic. Maybe it's a good idea to speak to an ostomy nurse or dietician who is attached to the hospital. I've received some good advice from the hospital dietician where I had my surgery. Good luck.

Terry

Thanks Terry for your reply. I have tried yogurt and prebiotic, but not much difference.

I don't want to get rid of the bacteria, but I'm guessing it has something to do with different bacteria in the colon vs small bowel.

Do you have lower abdominal cramping?

Thanks.

Hi Ron,

Thanks for your reply. Do you have problems with lower abdominal cramping?

If you have an anus, that is where the bacteria found in the colon may be.   So your small bowel does not have any. That is what the docs are telling me is my problem with the cramping.  

Hi Elaine, I don't normally have cramping, but if I overeat something like tacos or pizza, then I might get some. But I usually just drink more fluids and it passes.

Hi Elaine... I have an ileostomy. My surgery 1 1/2 years ago was due to infection over a period of 19 years of suffering. I had my large intestine, 1/2 of my small, my colon, rectum, anus, appendix... all gone, he closed up my entire lower cavity so my remaining organs don't drop as I have had a total hysterectomy years ago as well as my gall bladder and 1 kidney. It was a complete success and saved my life. Periodically I have cramping, but that's due to my eating too much and not enough water to plumb it through. My rare case of microscopic collagenous colitis is gone due to removing all of it. Although it could return in the rest of my small, the likelihood is very very small. Although I like yogurt, it's not in my daily diet as it doesn't need to be according to my doctors. I eat things that are high in potassium and sodium as my body does not reproduce them. Good luck, I hope my experiences have shed some light upon you...

Ritz

Thank you Ritz,

Although one of my docs thinks it is because I have bacteria found in the colon actually in my small bowel, which turns into functioning as a colon, I am beginning to disagree. I like you think it is related to food, either the amount of certain foods. If I just knew, I could prepare before I ate.

Are there specific foods that bother you, or is it the amounts?

Have you had anyone tell you it is wrong bacteria in the wrong place.

Thanks

Elaine

Mine has always been the wrong bacteria. I still have a compromised immune system and full of inflammation somewhere, but none anymore in my intestines. nbsp
What I eat is not an issue, yet I cannot process many foods like beef, unless it's ground up. I take small bites and try to chew, but at times I eat too much as food now tastes so good and I won't be in my bathroom with the runs and extreme pain as before my surgery. I just introduced salad into my diet...lettuce chopped up. I do not tolerate any raw veggies. Grape juice helps plumb through and that I can't eat. I eat fish and crackers mostly. And soft apples sliced very thin. nbsp

You mentioned the wrong bacteria. Is that what is causing cramping, or is it the food?

For me now...today, it's the food 

Tangleloft 06

I have had an ileostomy since 2014. I have no large colon. I have never changed my diet, never added any supplemental intake other than electrolytes, and never had a problem. I drink way way way more, and I don't mean alcohol:-). I believe if you are having cramping you have an issue. Who was it who told you it was possibly the difference in large and small colon bacteria? I can't imagine it would be all that different as they are attached and related? I never heard that before. Good gut bacteria is a major part of the body's immune system. Our bodies are amazing, with built-in preventative measures like pain to protect us from ourselves. We tend to ignore discomfort and pain, and consider ourselves "stronger and braver" the more pain we can tolerate. Pain is not good. Discomfort is also not good. If your medical provider is not concerned, I would probably try a soft diet for a week to see if the discomfort goes away. If liquids and liquid and/or soft foods (soup, mashed potatoes, oatmeal, applesauce--you get the idea) don't cause you any pain or discomfort but larger more solid intake does, I would consider an adhesion, scar tissue, or a small blockage. Any continuing discomfort or pain should be discussed with your surgeon because he is the one most aware of any possible locations for scar tissue, adhesions, and tight spaces will be. If he is unconcerned and you are still symptomatic after trying a soft diet, I'd seek a second opinion. My surgeon insisted that the bulge I showed him was not a hernia. I insisted on a CT scan. It was a double ventral hiatal hernia with three loops of small intestine caught up in my stomach, so they make mistakes too.

PEACE

Dadnabbit