Ileostomy for Slow Transit Constipation - Seeking Advice and Reassurance

 

Hello All,

My name is Molly. I'm a 43-year-old mother of 3 young boys and live in Michigan.

I'm new to the site and really appreciate how informative and supportive everyone seems to be. It's heartening to know there is an outlet like this, especially for someone just starting the journey.

I've suffered with slow transit constipation as well as a significant amount of gas in my large intestine for almost 5 years. My quality of life has deteriorated to the point that I'm looking into surgical options, including an ileostomy.

I have an appointment at Mayo Clinic in Rochester, MN, as well as a series of tests beginning June 5th. 
I have a pretty severe anxiety disorder which is exacerbating my fears and doubts, to say the least.
My biggest fear is that while the ileostomy will alleviate the constipation, it won't do anything for the gas in my bowel, which is a significant part of the problem.

Has anyone experienced a similar situation and achieved relief with an ileostomy?

Does anyone have any thoughts?

Hoping for some reassurance.

Thank you all,

Molly 

With an ostomy, instead of pain, gas causes your pouch to balloon.

Have you tried peppermint tea or IBgard for your gas?

https://www.yourgard.com/products/ibgard

 

I hope you're able to afford a psychiatrist/therapist to help with your anxiety. I have

GAD (generalized anxiety disorder) and am lucky enough to have a shrink who prescribes meds but also provides talk therapy. She's helped me since 1986.

I think the talking helps more than the meds.

As for the gas, each person is different. I manage to keep my filter clean and also use Gas-X. I have a colostomy.

Truly, I know the agony of anxiety.

Don't give up. You're young. Good luck.

Yes, I also have slow transit constipation along with gastroparesis! I got my ileostomy in 2017, and let me tell you, it changed my whole life! I don't mean in a negative way at all. Once it was in place, I could eat and had no belly discomfort! Now, since 2017, my gastroparesis has gotten slightly worse, so I have a pretty thick output for an ileostomy. I just recently, in 2023, went back to have my large bowel removed and just have a straight ileostomy instead of a loop ileostomy. I would highly recommend it with your situation being so close to what I experienced and still do, but at a lesser cost to me! When I say at a lesser cost, I mean I'm not bloated, in massive pain, doubled over, and all that good jazzy stuff.

Ah, yes, I've tried everything. Thank you for suggesting.
It makes sense that the gas would end up in an ileostomy bag if it originates in the stomach or small intestine.

For me, the gas seems to originate in my colon.
If my doctor trials a loop ileostomy, do you think I would still experience colon gas since it will still be intact?

Thanks

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Awe, thank you for your understanding.
I am fortunate to have excellent practitioners treating my anxiety.

Hi Molly!

I have a couple of younger children, as in not old enough to drive but guessing not quite as young as yours ☺️. There are a few women currently active on the site who have struggled with slow transit constipation; you're not alone. The nerves in my colon were killed by an autoimmune reaction (the why is the bit they're unsure of). I had my surgeries at Cleveland Clinic. They outrank Mayo as far as colorectal surgeries go. I have a relative who visited both Mayo and CC for an unrelated medical issue, and they preferred Mayo's approach. If after testing and consults the word surgery is mentioned to you, I have an amazing surgeon at Cleveland Clinic 😉

 

If you have an ileostomy, you probably will not have gas coming from your colon. Gas comes from bacteria breaking down certain foods. With an ileostomy, the output exits before it reaches the colon. Therefore, no gas from the colon.

G'day Molly, welcome aboard. Ask your surgeon about a total colectomy and having your colon removed. It will make life a lot better, as well as a Barbie butt. I know this sounds dramatic, but talk to the surgeon. It could make your life worth living. Regards, IGGIE

Thank you for responding.
I have a few follow-up questions if that's OK?

Prior to your loop ileostomy, did you experience a significant amount of gas (specifically in your large intestine) that accompanied your constipation?

When you had the loop and not the end ileostomy, did you continue to experience the gas, or did the loop stop the gas?

You mentioned being bloated and doubled over in pain. I'm not sure if you're referring to your experience prior to the loop or after as well? 
Thank you again!

Hi Molly, welcome to the site. I've had an ileo for 30 some years, and gas isn't a problem for me as my ileo has uncontrollable output, so is the gas, so I don't get a build-up of gas and the cramping it might cause.

How do you keep your filter clean?

I had slow transit constipation. I can't remember if I had gas or not. I went on for 4 years like that and I feel your pain. If you have gotten checked for everything else such as tests with your gastro system, have seen a urogynecologist to rule out female prolapse, then you may want to try a temporary ileostomy to see if that works out for you first.

This is what they did with me and it worked. After 2 years of having my temp ileostomy and during a colonoscopy, they determined my colon was not working at all, so I opted to have the whole colon and rectum removed. As that was the original plan me and the surgeon had before doing the temp. The temp was a test of sorts.

Wearing a bag has its own challenges at the start, but after time goes on and finding the right products and pouches, it's easy. We are here to help you as well. Just ask.

During the time before my ileostomy, I suffered terribly. On about 6-7 laxatives and in the ER sometimes 2-4 times a week to get unblocked. Even the colonoscopy drink Gavolyte was no longer working. At one point, I developed ileus and could not eat for months leading up to my surgery.

In the end, after they removed my colon, they could not determine any reason why it was doing this, but I was on a medication for anxiety that could have ruined my colon, or later in a hernia surgery, they found loads of adhesions that could have caused it.

Sorry, Traveler, but this is inaccurate. I have an ileostomy, and my gas problems didn't start until I got it! When I had my colon, I would get gas, but it would exit in the form of farts and would not cause me any pain. Now, with an ileo and the same diet I had previously, I get very painful gas that sometimes has a hard time getting out. It eventually does make its way out but does cause me pain. My theory is (and it's just my opinion) that the amount of gas produced is still going to be the same, but with a colon, the gas has lots of room to expand on its journey to your rectum. With only your ileum, it's very confined in a tight space and causes pain while making its way out.

Terry

Thank you so much for this advice. Your timing is incredible. I was just today telling my dad that I think I should consider Cleveland Clinic as well. After hearing from you, I'm sold.
Do you think it's okay to have all the testing done at Mayo, e.g., transit study, defecography, and the surgery at Cleveland Clinic, or should I get the testing done where I plan to undergo surgery?

Thank you

Thank you, Ron. I appreciate you responding.

I haven't had surgery yet. What do you mean by filter?

Hi Mollo, I suffered for decades with what was always described as constipation, but eventually correctly diagnosed as colonic inertia, or slow transit time. The muscles of my colon just didn't work properly. I was given a colostomy to start after my colon perforated, but that did not solve the problem. After a proper diagnosis, I got my ileostomy, a loop to start, and then an end with my colon removed. It was the best thing that ever happened to me and my quality of life has improved 100%. So, in this regard, I would encourage you to go for it. On the subject of gas though, not so sure. I never had a gas problem pre-ostomy. I do eat lots of gas-causing foods by choice, because I like them and they are good for me. My gas would come out without causing any pain before. Now, I do get painful gas (see my reply to Traveler for my theory on why) and although it's not all the time, it does happen. Often the gas will come out without pain, but then I'll eat exactly the same thing a couple of days later and I'll get painful gas. I know I could change my diet to avoid this happening, but I'm not willing to, so I have no one but myself to blame. I don't know what your diet is like or how willing you may be to adjusting it, but it's something to consider. I would never go back, gas or no gas. I used to say that my bowels controlled my life. I feel like I'm in control now, and I am not in constant discomfort and pain like I was pre-ostomy. Good luck in your decision making!

Terry

Hi Iggie,

Thanks for the welcome and the advice. I'm certainly hoping this surgery will make life markedly better. It's been a rough 5 years.
May I ask why you suggest the total colectomy & Barbie butt? In what ways will that improve quality of life over the alternative?

I'm sorry about all the questions. I have a lot to learn & consider.

 

Thank you,

Hi Hibiscus

Thank you for your message. It sounds like you made the right decision to have surgery.
Although I haven't met with a colorectal surgeon yet, my regular GI doc mentioned a loop ileostomy as a test as well.
Do you feel any different with one over the other?
Are there fewer complications, discomforts, etc. with the end ileostomy vs. the loop?

Thank you

Molly, I would have the testing done at CC if they can get you scheduled in a reasonable amount of time. For me, when they were trying to figure out what was going on with my colon, they did collaborate with Mayo. Both research hospitals are trying to figure out this sickness they are seeing in women primarily starting in their early 20s. A lot of places like their own studies too; surgeons are very particular with imaging studies.

Terry

Thank you. Your response was so helpful. And I can 100% empathize with your bowels running your life. It's no way to live. I have a couple of follow-up questions.
The first one is pretty dumb, but I'm going to ask anyway. Since having both your loop and permanent ileostomy, when you do get gas, it's only in your upper GI tract, correct? That is to say, you can't feel it in your lower abdomen anymore, can you? What about when you had the loop and your colon was still there, could you feel gas in your colon still?

Finally, besides the anatomical difference, what differences have you noticed between the loop and end ileostomies?

Thank you so much

Well, I felt better with both actually. I could finally poop! We all get gas and our bags will blow up like a balloon, especially when asleep for some reason. You just carefully open it and push on the bag a bit to let the air out and close it back up. The only thing that was giving me trouble is I was producing hardened mucous balls because I still had my colon and the colon was not working. I was still getting the rectum spasms, but I could poop and I no longer felt like I had a 1000-pound weight bearing down on me. So... the test result for me was to go for the end ileostomy.

With the end ileostomy, I feel 100 percent better. My whole colon is removed and the rectum. Barbie butt, they call it. Sewn up. The only downfall is no reversal possible with the end ileostomy. In my case, I had no choice and my quality of life is so much better. Sometimes it gets to me having to wear it, but then I make myself remember what I went through before and I settle down.

Now there are female problems like prolapse that can cause slow transit as well. You might ask for a referral to rule out that first because if that is the cause, they can fix the prolapse. Sometimes a prolapse can even be in the pouch of Douglas in our female organs. Rectal prolapse, etc. Then there is a special CT or MRI, I can't remember which one, and they fill you up with this stuff and watch as you're emptying out. This was checking for prolapse.

Have you had all the testing like CT scans, Crohn's, all that? They had me do a test where I had to eat radioactive scrambled eggs and they scanned every hour or so to watch how I was digesting. Then another test with these pills that looked like bullets I had to swallow and then you go back in to see if any are still there. I could not finish that test though because you can't take laxatives for a few days and I wound up curled in a ball in pain on my bathroom floor from being backed up. Those tests were after I got to the colorectal surgeon and they did some tests to check my rectum also.

So as you can see, there are a lot of tests to rule out other causes before you make that move to the ileostomy. So yes, get to colorectal but also see a urogynecologist. The urogyn specializes in female prolapse. Mine is who first brought up the bag and referred me to the colorectal surgeon. At that point, after 4 years of suffering, I was begging for a bag anyhow.

About the third year into my severe constipation, a hospital determined I had ileus by CT scan and my gastro who works at that hospital saw that and she was a witch. She had my colorectal surgeon appointment I set canceled and sent me to a psychologist. Told me she wasn't doing any more tests on me even though I had ileus and could not eat while losing massive amounts of weight. I called her bluff and went to the psychologist who, when I came in and sat down, asked me why did she send you here? I'm looking in your chart and you have an ileus. I said yes, I know. She said to me, they are not doing you right here and we are lucky to have so many good hospitals here in Cleveland. She said please go somewhere else who will help you. So off to Cleveland Clinic and that is where all my testing came up. They immediately started taking care of me.

I feel your pain.

Came back to add that the temp was easy. The end ileostomy, of course, I had a bit of pain in my Barbie butt for a while but nothing compared to those horrible rectum spasms I was getting before my surgeries and bonus, no more colonoscopies to get ever again with the end.

If you go to Cleveland Clinic, I highly suggest Dr. Steele. He's the head of the department. He has a great bedside manner and is very caring.

Hi Mollo, First of all, there are no dumb questions! When I get gas, it is only in the lower abdominal area that I feel it, like it's trapped right in my ileum. Sometimes just walking around will work it out, or sometimes I'll lie down and use gentle pressure around my stoma. When it comes out, it's pretty obvious, as in loud! Stoma farts will rival regular farts any day! I found no difference between having the loop and then the end. Keep in mind, when you get a loop, the colon is bypassed, so nothing is going through it. It's only there in case you need to hook things back up again. Having my colon removed was a big relief because I had to live for around six months with two stomas, one my colostomy stoma on the left-hand side, which was inactive, and my new loop ileo on the right. When the surgeon gave me the end ileo and removed my colon, he took down the old stoma and I have a small scar where it used to be. The only other difference I've noticed is that my belly is a little flatter, never a bad thing, and I lost around three pounds because I'm missing an entire organ.

Terry

Thank you, Terry, for the reply.

Perfect. I'm calling my doctor tomorrow for a referral.

I appreciate this advice.

If you have a total colectomy and Barbie butt, all you have to worry about after is the stoma. And with just the odd leak, it's a lot more life-friendly than all the other life-threatening things. I had 18 years of problems with a J-pouch, but 3 years ago I asked my surgeon to get it out, and I got a full colectomy and Ken butt. Life is now just perfect, and as I have said before, I love my stoma. Regards, IGGIE

Terry, I think you misread what I said. Molly was wondering if she would still get gas from her colon if she had an ileostomy. I stated she would not be getting gas from her colon since it is being bypassed. I never stated you couldn't get gas from an ileostomy.

You're right, Traveller, I did misunderstand your meaning.

Terry