Help Needed for Sister's Ileostomy Obstructions

Hi everyone,

I joined so I could reach out for my sister who is having an incredibly difficult time right now with her ileostomy.
She is 27 years old and has a complicated health history including POTS, EDS (Ehlers-Danlos syndrome), and mast cell activation syndrome.

Her large bowel is practically non-working, with very little to no motility.
In October 2021, I believe it was, she had an ileostomy done.
To my understanding, the hope of the ostomy was to give the medical team time to figure out what's going on with her bowels and systemic symptoms and health issues.
This poor thing has been through SO much.
Pretty much since day 1 after the procedure, she has been experiencing non-stop obstructions.
Her stool is incredibly thick.
She sees SEVERAL specialists including an EDS specialist, endocrinologist, gastroenterologist, allergist, etc.

They all genuinely have NO clue what to do with her, and it's heartbreaking.
She's been told that she has inflammation around the inside of the stoma, and that's the reason why she keeps getting these obstructions.
These obstructions also cause her POTS to flare up as well, leading to a possibly serious health situation.
She also has to take Miralax daily, which doesn't seem to help.
When having an obstruction, she does do extra Miralax and then does the straw/tube method to open back up her stoma. To my understanding, this doesn't work in the moment and seems to take a couple of hours to get any stool out. She said it also prevents her pouch from sealing, and thus making a huge mess and whatnot.

She's also recently been experiencing hypoglycemia episodes as well as weight gain.

Is there anyone out there who has similar circumstances and/or has any advice I could give her?
She's been bounced between so many doctors and specialists, but no one can really provide solid advice on what to do during these episodes or what a plan can be for her long term.

Thank you so much!

Hi Sisterof,

Where does your sister live (which state) and where is she being treated at? If she's not at one of the larger teaching hospitals... she should be. Let me know.

;O)

Bob

We are in Maryland. And she's been to one of the bigger hospitals in DC; I want to say MedStar Washington Hospital.
But I wonder if she could get in at Georgetown or Johns Hopkins. Maybe they would be better hospitals.

Hi SisterOf,

My ostomy surgery was done at MedStar Washington Hospital. The surgical team was impressive (which is why I chose them), but I wasn't impressed with their gastroenterologists. But that was almost 8 years ago and doctors come and go.....so all bets are off. If I were you, I'd get your sis up to both Georgetown and Hopkins for 2nd and 3rd opinions. She sounds like a very complex case and the more docs that put eyes on her, the better. If they all come to the same conclusion and path forward, then you know you're on the right track. Everybody is pretty jammed up with the COVID backlog still having an effect, so getting an appointment in person may be a bit difficult......at least anytime soon. Your other option is to schedule a tele-visit as soon as someone is available at both places and take it from there. Once you do that, the doc (or nurse practitioner) you talk to will be able to get her in much quicker than the scheduler you'll talk to on the phone. The last option is to just have your sis show up in each place's ER. I'm not kidding. It's sometimes the fastest way to be seen by the right folks........and I've done it....and it works. When you show up there, they're obligated to take care of you...........so do it if you have to and don't feel bad about it. It's great of you to be helping your sis! Let me know if there's anything else I can help you with!!!

;O)

Bob

Bob,

Thank you so very much for the advice.
It's so hard and just overwhelming seeing her go through so much.
It's like even though she sees such an enormous team of doctors, nothing definitive is ever done or advised.
I'm definitely going to pass this whole reply on to her.

I'm also curious about your diet. What foods do you eat to avoid obstructions?

And lastly, who/what type of specialist do you consider your go-to when something comes up or an issue arises?
I know that's kind of a tough question because it may completely depend on what the underlying health conditions are that caused the need for an ostomy in the first place; but just out of curiosity, I'm curious because I don't know which specialist should be her go-to. If that makes sense?

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hi Sis,

As for my diet... being short-gutted, I can eat what most can't. Meaning what most consider to be 'bad' things, like fats and cholesterol, as they simply aren't absorbed. Those parts of my intestines are missing... so I eat whatever I want with no ill effects. What I've learned recently is that sugar causes bowel inflammation. I'm going to elaborate more on this when I get the time, but in short, we've poisoned our own food supply. Autoimmune diseases didn't really exist until the 1950s when we started f*cking with our food. Our bodies weren't designed to deal with processed food (i.e., carbohydrates and sugars) and it's slowly killing us. The medical community is just starting to realize it now, and I've been involved with some testing that proved to me (using myself as the guinea pig) that sugar wreaks havoc on our intestines. The problem is sugar in all its synthesized forms is now in all our food. All the **ulose and **tose ingredients are sugars. Same with fructose. Docs still think it's the fats that cause heart and liver problems... but it's been proven it's not. Our bodies can process fat very well. It's the sugars we weren't designed for and can't handle. That's the cause of all the obesity, diabetes, fatty liver disease, heart disease, etc. Anyway... I'm digressing. I can eat anything and my blood pressure, cholesterol, albumin, etc., always stay perfectly middle of the range. I've astounded quite a few folks. But that's me, and it's because I'm short-gutted. Your sister will need to figure out what works for her.

In terms of obstructions, I can obstruct if I don't follow the cardinal rule of ostomates... chew, chew, chew. In my case, having very little bowel means whatever I eat doesn't have the time to fully digest like it would in the normal 20+ feet of bowel in a normal person. So when it gets to the end of my 3 1/2 feet of bowel, some things just aren't digested. So chewing is my only real option. Last night I obstructed because I didn't chew two plums I ate earlier, and I had to pop my bag off and reach in there and pull out a wad of undigested plum skins. So tell her to chew until she's sick of chewing, no matter what it is. Right now, I've gone KETO to avoid all the carbs, which are the complex sugars, fiber, and the simple sugars. So it's fatty meats, fish, poultry, butter, coconut oil, mayonnaise, cream, etc... avoiding all carbs and the plant-based oils (canola, vegetable, corn, etc.), as those are purely processed foods that cause trouble. We can chat more about the diet thing whenever you want... but keep her away from all sugars.

When an issue arises, my go-to is my Gastroenterologist... who just left the state due to family issues... so I'm in the process of interviewing prospective GI Docs now at Georgetown. I've also got a number of Gastros at Hopkins I've made contact with and have no problems going to see them if no one at G-town pans out. I spend a bit of time trying to find good Docs... because we ultimately rely on them for our health if it gets past the point that we can fix it ourselves... and you won't have time to find a good one when you're in a bed in the ER. I also stay in close contact with the Small Bowel Transplant team at G-town as well, since they deal more with short-gutted patients than most Gastros. And I have a dietician who specializes in IBD patients that's on my team as well. I find it's actually hard to find Docs that are well-versed in actual ostomies. Seems the Gastros don't deal with them as frequently as you'd think and generally send you to see the surgeon who did the operation when specific stoma or ostomy-related issues arise. So I also know the Ostomy Nurses at both Hopkins and G-town pretty well. You can never have too many people on your team... cuz you only have one shot at playing this game right. And we all know how it ends... it's just a question of when. I'd start with a quality Gastro for your sister's main point of contact. A good one will know when her problems are beyond him and will not hesitate to bring in others onto the team.

I hope that helps!! Let me know what else I can help you with!!

;O)

Bob