Motility disorder? Multiple stomas?

Just wondering if anyone here has a motility disorder and/or multiple types of stomas (gastrostomy/jejunostomy/ileostomy for example). I'd like to compare war stories, if you're willing. 

Yes!!!!! If you read my profile I have Ehlers-Danlos with the GI conditions of Esphogheal Spasms, Gastropareiss, Pancreatic Insuffiencey,Chronic Intestinal Pseudo Obstruction, Colonic Inertia, SIBO, and Pelvic Floor Dysfunction. Then I also have a ton of other co-morbid conditions. I have an Ileostomy and a GJ tube and I am about to restart TPN (Had to stop due to a very bad line infection that killed) or IV fluids/therapies at the least. I have found no one else on here with multiple stomas or people with motility conditions because having an ileostomy due to motility issues is very uncommon. I got my ileostomy in November 2017 when I was 18 and it will be permanent so I can relate to being a young person with an ostomy

Pseudo-obstruction sucks. The worst part was how long it took to get diagnosed and that adult GIs (or physician who will even look at your case or understand what pseudo-obstruction is) are super difficult to find. Yeah, I was told it was an unusual procedure. My ileostomy was placed by Cleveland Clinic last August. They also moved my g-tube that I had placed in 2011. I have gastroparesis too so they also did a pyloroplasty and placed a separate J-Tube site for meds and feeds (I had a previous j tube that was placed in a bad area of bowel in 2011 so it had to be removed after two years along with the bowel and the G/J's I had after that kept ending up curling in my stomach vir vomiting). I'm still on TPN but trying to wean down. I've lost track of the number of times I've had sepsis since I've been off and on TPN for a decade now but an all silicone Hickman with alcohol locks seems to be much better - only one line infection in two years versus 5 per year with a PICC and heparin locks. I'm unofficially diagnosed with EDS. And yeah I have the super fun comorbidities too. Do you find that the SIBO is like way more painful that makes sense? Like, it's just bacteria but I always have so much more pain and fatigue when it's acting up. 

I agree things are  worse when I have  a SIBO flare. Just symptomatically a lot more pain then I already have.  Yeah my colorectal surgeon said he had never put an ileostomy that was going to be permanent in someone as young with me and due to motility issues only. I have had a ton of issues with my GJ tube since I got it in December 2017. The ballons keep on deflating really fast it seems like and I had two sutures holding in my tube but they tore through my skin so no my tube is literally being held in with tape. I see a new GI tomorrow. 

Do you mind if I ask who you see? And try the large Grip-Lok https://www.healthproductsforyou.com/p-grip-lok-universal-catheter-and-tubing-securement-device.html for holding the G-Tube. Sutures, in my experience, just rip through you. I use my G for drainage 24/7 and with the weight it takes two of the large Grip-Loks to hold it in place. I'm allergic to a lot of adhesives at this point but I don't have any trouble with those.

Living with Your Ostomy | Hollister

I am using the grip locks and it definitely helps make it feel more secure since tape around the bumper of the tube is the only other thing holding it in. I have been waiting a month to get it replaced. I am seeing a Doctor nomed Richard Sadowitz today. I am just estbalishing care again. I moved about 2 months ago and this was the soonest a GI doctor could see me and my primary care doctor sends all their patients to them. I was in the hospital last week for a GJ tube infection, malnutrition, and dehydration and they want me to go to Emory to see a motility specialist. The GI team also wanted to place a port and start home IV Fluids and nutrition but the internal medicine doctor(who I was admitted under) refused to do anything. 

Hi Maddie &"  A stoma by any other Name".....

I'm Marsha, and I have my ileostomy ( for Ulcerative Colitis) for more than 50+ years....since I was a child of 15.   I didn't have my final surgery until I was  19, which is when they finally removed the diseased anus and rectum, which would not heal.   

But compared to what you two are dealing with.....the ileostomy seems like the least of it....   at least it was for me. 

  THe UC was so bad, that I lost track of all the blood transfusions I had ( one gave me Hep C   which wasn't diagnosed until 40 years later)   For the 4 years I was sick, I was in and out of hospitals, out of schools, on bed rest, and on all kinds of experimental medications....that caused other complications ( calcium deficincy....in a back brace )     I probably had about 20 relatively  healthy years....between 20 & 40, but then old conditions, and new ones (  kidney failure,  blood pressure, diabetes from too much steroids ) started to flare up.    I had gone through 2 pregnancies in my 20sm  and managed to have 2 beautiful boys......who both have inflammatory bowell disease.....one has UC, the other Crohns.   But thankfully, their conditions are being managed by medications, and so far, they've avoided surgery.  But they are both raising young children so I/ we worry about their future as well.  

It's really good that the two of you found each other...   as it''s good to have someone who understands what you're going through.  There are so many people on this site......who have their own " war stories to tell", but to me......( now 69, ) that I managed to live a full and active ( although not so healthy life) is a miracle....   I'm grateful every day, for the time I've had...    And when I read what others are going through.....I reach out in understanding and compassion.....   mostly to say  that each day is precious, so make the best of it, even when things are not going so great.   Easier said than done.!!!!

Last week, I went for an exam of my back ( MRI of my long standing degenerative disc disease),   went for a breast biopsy (  unusual spot on my mamo) and   had to go for a colcospocy,  ( for a less than perfect pap smear).    My blood work was also eratic....with the potassium too high ( dangerous for the heart....   Sigh!!!   All I wanted to do was cry.....and I don't drink....but I wanted to eat...    Thankfully, all the tests were negative.....or jusst " need to be watched".   I'm grateful,   but I don't think I'll  ever have a " medical/ problem free life".   Such is life....   So enjoy what you can, when you can.   Well being can be fleeting.      Best regards.   Marsha    

Hi Marsha,

Haha I agree, the ileostomy is the least of it. By the time I got my surgery last August I could hardly care less about the idea of having a bag. I've had to get used to having an external appliance to help make my GI functional in the forms of central lines and g and j tubes, so this wasn't as tramatic as it would have been had I not been dealing with obvious GI complications for over a decade. I agree that life's about enjoying what you can while you can. You are given certain choices and you just do the best with what you have, and who you are, at that moment. 

I'm glad the tests were negative/ok for now and I hope things continue to improve for you!

AJ

Thank you so much!