Advocating for ileostomy

Hi everyone, I’m new here! Sorry if this isn’t the right topic to post under. I’ve had GI issues my entire life but they became truly horrific about 7 years ago. I’ve seen some people on here who were able to get an ostomy due to low motility / severe constipation. I was wondering if anyone here could help me advocate for the same.

I’ve tried all the meds, dietary changes, even tried enemas and routine bowel cleanses but nothing is working or I can’t tolerate it. I’ve been to two motility clinics that were pretty useless. I recently made an appointment at Cleveland Clinic; they paired me with a regular GI and my understanding is they’d refer me to a colorectal surgeon if they see fit.

I’d really appreciate any guidance from anyone who has gone through this! I feel so lost and have no idea what to do at this point. I’d be devastated to go to Cleveland just to be told to keep trying the same meds I’ve already attempted or to go to pelvic floor interventions I’ve already been through.

Update: I called Cleveland Clinic and they agreed to switch my consult to be with a colorectal surgeon. Wish me luck and I’ll still take any tips y’all have!

Hi Shortstack and welcome. I know there are several folks on here who have ostomies due to motility issues, hopefully they’ll chime in. I had bad UC for only a year and a half and tried everything to prevent surgery with no lasting success.My gastro at the time said it was time and referred me to a surgeon. It seems to me that surgery would be indicated for you since you’ve clearly exhausted everything else with no positive result. I hope you get what you want but be prepared to advocate for yourself. That’s a lesson all of us on here have learned and it’s a good skill to have.

Good point. Also, which ostomy? Ileo or colostomy? Are u better for. ? Colostomy is much more forgiving than an ileostomy.

Gosh, only if I had that choice!!! 😞

And. 100 other peeps, too.

Hi shortstack, welcome from Oz 🇦🇺

Hi Shortstack, I'm sorry this is an ongoing struggle for you, and I hope you receive the treatment that gives you relief.🌻🌻🌻

My Ostomy Journey: Jearlean | Hollister

Hi Shortstack,

What eefyjig is saying is true. Be ready to advocate and speak up for yourself. In order to be able to do that, you'll need to be prepared. Learn all that you can about colo and ileos. Let your new GI know everything you've been doing including the meds and pelvic floor therapy. Let them know that none of it has been working and that you're still having problems. Make sure all of your medical records and imaging have been transferred over at least a week before your appointment so that your GI has time to review them. Ask if there's enough info in your records; imaging and tests and which ostomy they would recommend (as Warrior mentioned). (Your GI will likely want new images and tests before being able to go forward.) You'll, of course, need to say all of this in your own style but let them know that you're very receptive to surgery.

Excellent reply,. So true. U can also refuse to take tests and meds which had been taken and done before. Be smart about this by being prepared.

Thanks for your response and I’m sorry your UC pushed you to needing surgery. I know it’s nobody’s Plan A. Learning to advocate for yourself is invaluable but so difficult (especially with multiple chronic illnesses, it’s just exhausting).

Hi LittleButton! Thanks for chiming in :). I’ve seen 6-7 GIs, two of which were at motility clinics (UCLA and Cedars Sinai). They both kind of threw up their hands and said to drink more miralax despite my lack of response. I also requested more motility studies (like the capsule one or barium swallow) and they said they’d treat me the same regardless so why bother. I’ve requested surgery and was ignored. So at this point I was just hoping anyone could tell me exactly how they got referred because the path I’ve taken has not worked🙃

May i,ask if u have a primary care doctor? This is who should be advocating for you and with you. Sup with that?

Hi. I hope that you can get the thing that works for you. I had suffered from colitis only twice before the final bout. 1st time i was hospitalised for 10 days on heavy I.V antibiotics, second time, the minute it started i caked my gp and got oral antibiotics. They did the job that's time. The last time was this Feb. But i knew it was worse than before.. they tried the I.V route but too no avail. I knew the way it was heading. I kept telling them I was getting no better.. ended up with an 8hr emergency surgery fighting for my life. Lucky for me I had a great surgeon.

Rest is history lol

be safe and well

Tony

Hi Shortstack, I see from your bio that you are only 29, so I'm thinking the reluctance to recommend surgery for you might be at least in part, due to your age. I struggled with what was called 'chronic constipation' for decades, and tried all the latest drugs as they came on the market, to no avail. I even had motility testing which showed I was in 'normal' range. I knew I was anything but normal, but couldn't convince the medical profession. I was in constant discomfort and pain. It wasn't until I was 67 that my poor colon finally perforated and they had to give me an emergency colostomy. It didn't work, because it was my colon that wasn't working properly, just as I had tried to convince my doctors for years. I was in and out of hospital with obstructions, and was finally correctly diagnosed with 'colonic inertia'. I got my ileostomy, which changed my life for the better instantly. I had my colon removed, and I function really well with the ileostomy. No more pain and discomfort and I now control my bowels, instead of them controlling me. Hopefully you will get the right diagnosis, and if your situation is like mine, don't bother with a colostomy, as it won't solve the problem. From what you describe, it sounds like you may also have colonic inertia, and bypassing the colon entirely is the only way to solve it. I wish you the best, and let us know how you get on.

Terry