Please help: serious problems with ileostomy

[penelope]

Dear Friends,

I’m writing you all in a great deal of distress and angst and would deeply appreciate any wisdom, conjectures, suggestions, and advice you all might have to share. I apologize in advance for the length of this message.

First, because there are a variety of different circumstances and underlying conditions that eventually bring us to a place where we require an ileostomy, I want to share some quick background information. I am a 57 year old female. While in my 20s, I developed a spinal cord tumor. Doctors would operate and then it would grow back and they’d operate again. Over and over. The combination of both the tumor itself and the repeated surgeries permanently destroyed my bowel and bladder function, as well as did some additional neurologic damage. I have what is called “neurogenic bowel and bladder,” which in practice means that I have to manage my bladder through catheterization, and my bowel (up until the ileostomy) through strong stimulant laxatives. I’d only take the laxatives every 5 days because when they would eventually kick in, my condition meant I had no control whatsoever and would need to be at home near the restroom. The laxatives could continue to produce output for up to, say, eight hours or so, intermittently. I considered an ileostomy in my 30s, but never went through with it.

About a year and a half ago, my laxatives stopped working. It became ever more difficult to have any bowel movement at all, no matter what I did. I truly tried everything. I finally decided to go through with the ileostomy in March of this year. Friends, it was liberating. For the first time in 30 years, I did not have to carefully manage my schedule and work life around laxative days. I had ease of output. I learned very quickly how to manage my bag and other appliances. I was looking forward to traveling to Europe with my husband this summer. I had a perfect porridge-like consistency to my output, and while I was still being cautious with my diet, was managing well.

About a week ago (hard to precisely reconstruct dates), everything changed. I began having a very hard time with output: it became much, much too thick–globules with no liquid coming out of my stoma that couldn’t slide down my bag—and food would sit for hours and hours in my system with nothing happening. After about two days, it got so bad that I reached for the Miralax my surgeon had prescribed for emergencies. That basically did the trick, but the next day I had no choice but to do it again. It got so bad by day 3 I drank fiber-free green juice–which I knew had a laxative effect on me–to try to propel food from my system before taking Miralax for a third time. The next day I woke up, changed my bag, and headed to the ER. I didn’t eat anything. I strongly suspected I had no blockage because I had been using emergency techniques to keep from having one. I had to wait for hours and hours at the ER. I kept sipping on beverages, keeping well-hydrated, alternating between water and some electrolytes. By the time I got home some 14 hours later, I hadn’t emptied my bag even once. There was some brown viscous fluid that eventually filled my bag up to a third of the way that was clearly the Ensure drink I’d had two days previously. They did a CT scan with contrast at the hospital, found no obstruction, and sent me home. By this time–because I’d been eating so little the previous few days–I had also lost substantial weight. I am naturally very thin and small, and had lost weight in the aftermath of the ileostomy as I tested foods, etc. and learned to eat again. Anyway, the next day I had some toast and applesauce. Several hours later, nothing had come out. I drank some green juice, and after a while, a spiral of my toast came out with the applesauce, hanging down almost like solid poop. After several more hours, some of that was on the inside of the bag, but none of it had traveled to the bottom, and it was a very, very small output. I took pictures for my surgeon and sent them to her. She called me that night. The first thing she did was berate me for going to the ER. I explained that I did so only because I couldn’t have any output without Miralax after three days. She said my picture looked fine: a very, very thick toothpaste coming out of my stoma. I explained that hardly anything came out, and it was only because of the green juice. She told me to eat more fiber and to make an appointment to see her in a few weeks. (I should add that nothing about my diet had changed during any of this). Now before my surgery, we had worried a little bit that perhaps my small intestine had also been compromised by the tumor, so we did a small bowel follow through test before the ileostomy. I couldn’t drink barium because it would make me too constipated, so we did an iodine-based contrast instead. It is not as thick as barium and has a slight osmotic effect. I was taking Motegrity before the surgery–which helps with peristalsis (helps propel the gut)--so deliberately didn’t take any the morning of the test so as not to affect the outcome too much. Results were fine. Now back to the present: when I talked to my surgeon on the phone–when she told me to try eating more fiber–I asked her if I could try Motegrity instead of Miralax if I needed to. She wasn’t thrilled with the idea, but said yes. The next day–it had been at least 19 hours since I’d taken Miralax–I took a Motegrity. And things started working right away. Dinner was some pasta with a lemon butter sauce and maybe a third to half a cup of canned green beans. It came out way, way too thick, but a tiny bit of green juice took care of it. Today I took Motegrity again, ate some scrambled eggs and toast–and . . . nothing. After six hours, none of it had come out. I took green juice, and the green juice came out, but nothing else. And so here I sit. Tomorrow I have an appointment with the ostomy nurse. I will prepare a list of questions to ask her, and also ask her to physically examine my stoma.

Final details: I am very, very small–my normal weight is 95-98, but I probably weigh in the 80s right now. My stoma is very, very small: near the very bottom size on the Hollister template. I have a loop ileostomy, not an end ileostomy. So the inactive stoma sits on top, and the active one on bottom. You cannot see the opening of my stoma at rest.

And that’s the full update. Any thoughts, suggestions, advice so very, very much appreciated.

Best wishes,

Penelope

[ot dave]

Hi Penelope,
Welcome to the boards. Sorry to hear about your struggles. You've got a lot going on.... I have a colostomy, so my experiences are different than yours. To me, in my limited frame of reference, it doesn't sound like you have an obstruction. You don't mention any cramping/discomfort, just a lack of "typical" output. That said, typical output for you may be changing. You're just now around 3 months out of the procedure. It's probable that your system has adjusted to the bypassing of your colon, and that your small bowel is now adjusting to your nutritional needs differently than what you initially experienced right after the surgery. If I'm not mistaken, I think that this is pretty common. It also doesn't sound like you consume a lot of food either, so output might be slow to make its way to the end, again, an adjustment to what you initially experienced. Your body was used to not having bowel movements for up to 5 days...which isn't typical either! You may just be settling into a new pattern of normal for your body.
I know this is all new and sometimes disconcerting, but absent any other physical symptoms, as I said, your body may just be getting to the right adjustments for your nutritional needs. With ileostomies, I know you need to be more vigilant about not getting dehydrated, so continue to consume an appropriate amount of liquids. Keep your doctor and ostomy nurse appointments as they will know you better than I/we do here on the interwebs!
Hope that helps some.

David

[Shamrock4806]

Green beans + small stoma, not a good combination.

Not a solution to your overall problem but I think perhaps your diet needs some further refinement to ensure consistency and ensuring a more liquid like output. Little chunks unfortunately can clump together and cause a blockage.

What I suspect is you indeed had some blockage from the green beans but it was so small as not to appear any different on the scans.

Certainly one can have veggies with an illeostomy, just for some it needs to be pea soup or as a juice to ensure a timely exit from the stoma. I've noticed very thin potato skins (sometimes digestible) will come out LATER than the actual meat of the potatoes themselves which digest fully rather quickly. So extending that theory to the green beans could mean they haven't exited when expected.

Review these two posts:

This one gives the best list of problematic foods and drinks for an illeostomy I've ever found and it's not available online.

viewtopic.php?t=27735


This is my personally tested diet based upon the list above. Other than mashed skinless potatoes there are almost no solid veggies on my list for a good reason, they don't fully digest into a near liquid. Neither do fruits for various reasons. But applesauce is fine. So you should get the idea.

viewtopic.php?t=27738

Hopefully both will get you back on track in that regard as I've found research into what foods and drinks from other sources woefully inadequate.

My thinking is if you can ensure a consistent liquid output through better diet control that can weed out one part of your overall problem so you can focus on other issues.

Being dehydrated doesn't help neither, water, milk and a little fruit juices are the ideal solution. Nearly everything else causes issues. Also if it's very warm can reduce water and cause thicker than normal output.

And one more thing reviewing this post should explain the illeostomy eating cycle, when you don't eat the body still produces bile which can be a light green or tan to even jet black depending what is mixed into it. Always black stool is indicative of bleeding and you should see a doctor right away.

viewtopic.php?t=27743

Hope this all assists. Good luck and sorry about your condition. I will pray for you.

[penelope]

Thank you both! I particularly appreciate the diet advice. Yes, first thing I noticed on your list is very few non-pureed fruits/vegetables. That's quite helpful. It's frustrating, because so many ostomy nurses and surgeons tell you you can start to eat most anything after two months. My ostomy nurse this morning told me to go eat whatever I want, but to chew really well. I am starting to realize that while I could tolerate cooked, peeled carrots/canned green beans/canned beets initially, maybe I can't anymore.

Thank you again

[penelope]

Shamrock4806,

Based on the list of foods you provided that work well with an ileostomy, would you mind terribly posting what a semi-typical day might look for you in terms of diet? Since solid fruits and vegetables are so difficult, do you make a point of having fruit and/or vegetable juice daily? Or do you sometimes go a whole day with no fruits/vegetables?

Thank you so much for these terrific resources!

[penelope]

Oh, also meant to ask about bread--I didn't see it on your list, but maybe I missed it. Thanks again!

[Shamrock4806]

I was fortunate and was referred to see an otosmy dietician which had an entirely different opinion and better experience on what a person with an illeostomy should not eat. She provided me with that list.

And chewing very well doesn't always do the trick. I've chewed extremely well and still find chunks in my output. I found it better to ensure it's fluid or will digest fully before eating it.

As far as my daily diet, it changes depending upon cravings. I eat whatever whenever I want but try to eat larger meals during the day before 3 pm and smaller meals afterwards to keep hunger at bay and not trigger an overfilled bag while sleeping.

The main thing is portion control and spacing smaller meals more often over 24 hours, not just slam three large meals a day like a normal diet is. Certainly avoiding mixing potentially diarrhea causing foods and drinks at the same time.

I drink fruit juices quite a bit, but only a small glass once a day. If I drink more it triggers a runaway diarrhea condition that I have to stop eating or drinking anything to get it to stop several hours later. God forbid if my bag leaks during an episode like that, I'll have to put a chair in the shower and wait it out.

I do a V8 juice once in awhile if I crave it, but prefer pasta with tomato sauce and mashed potatoes with butter, perhaps some refried beans. That's about my limit on veggies.

Another factor I look at is because I need to eat small portions, I prefer meals that pack a lot of energy punch. Proteins and carbs mainly. So this negates a lot of veggies as much of it doesn't digest or doesn't pack much of any energy. I eat or drink just enough veggies for nutritional purposes and take a good multivitamin multimineral.

I keep a variety of different acceptable food around me and just eat whatever whenever. Preferring little preparation or involvement, boil some water or microwave already cooked meals.

[Shamrock4806]

By the way one can train themselves to sleep only on their backs by putting a pillow under each arm.

Helps a lot to keep from blowing a leak during the night.

[Shamrock4806]

Bread is on my list, it's an energy food with carbs, but I avoid those with grains. I avoid cornbread as corn doesn't digest fully and very dry bread by itself less it causes pancaking.

[penelope]

Thank you so much for taking the time to respond--this is all so helpful!
Best wishes,
Penelope