Seeking Advice on Managing Parastomal Hernia and Prolapsed Stoma

Hi All! I could really use your advice! I'll try and make it short! Back in June, I noticed my output was a couple of hours behind. I went to several doctors since then (PCP, Gastro, Colorectal Surgeons), and things have progressively gotten worse. I now have a hernia bulge above my stoma, and a prolapsed stoma. My output is almost nonexistent most of the day... drippy. He moves, but slower and nothing comes out. Once I eat solids, he stops going completely. I've been taking laxatives to get him to go when things get extremely painful. I feel constantly full. Even on just a liquid diet, my output is 8 hours or more behind my old normal. I changed my diet to eating soft flaky foods. The doctors say the hernia and prolapse aren't causing my symptoms. They say it's a motility issue. I don't disagree on having a motility issue, but for things to take a turn so quickly, I disagree on the fact that the hernia/prolapse aren't the cause of my symptoms right now. I have had CAT scans, but they all showed up normal. The contrast has a laxative effect. What do I do? How do I maintain and live well staying like this? Is this normal? What do I avoid so the hernia doesn't get worse? Can I still weight train? I haven't since I realized I have a hernia. I'm afraid to but also have been feeling unwell because of all of this. I don't know what to do and feel I'm not being taken seriously. But I do know I can't stay like this…
And if anyone that lives near Northeastern PA knows of any doctor that may help, please let me know!! Thank you to anyone who took the time to read my worries!

I have a hernia and all of my doctors have basically said if it's not physically hurting me in some way to try and live with it as long as possible because fixing them has a very low success rate for the long term. So, I'm waiting. Get a belt, Cplumber will probably chime in here because he's had several hernias. As far as restrictions and since you do weight training, you know which moves exert extra pressure on your abdominal muscles. For example, you know regular old-style sit-ups put a lot of stress on your stomach compared to doing things like planks, leg lifts, etc. Squats with heavy weights for your legs put extra oomph on your abdominals compared to using light weights like your warm-up sets or leg extensions and curls. Maybe try resistance bands (maybe you do already) instead of heavy weights. Basically, adjust your exercises to avoid too much added exertion on your abdominals. Go mow your yard. Instead of going up/down the incline, can you go across to avoid added exertion? One of the few requests I had when I bought the house we live in now was a flat yard because my first house had a terraced yard and I had to pick the mower up a couple of steps to get it in the backyard and had to deal with retaining walls. 😡 Anyway, don't stop living, just adjust how you do things and be happy, you now have 7-pack abs. 😁

Hi Gemini,  Alex has given you good advice on your hernia, but obviously there are other issues.  How much of a prolapse do you have?  I had a prolapse that was so bad it totally stopped my output, so I find it odd that they are telling you this is not at least part of the cause.  Not having output for 8 hours with an ileo is not normal, and you shouldn't be in pain.  Keep advocating for yourself until someone listens.  Can you see a different doctor?  Are you keeping well hydrated?  Drinking plenty of water and other liquids is essential for an ileo, and should help get things moving as well.  

Terry

Your best type of doctor to go to is a colorectal surgeon. If one colorectal surgeon doesn't listen, find another one until you find someone that listens. I've been in your situation quite often. You've got to advocate and don't stop until you find someone who will listen and take you seriously. You know your body best and you know what doesn't feel right or isn't working right. And tell these doctors exactly that: you know your body and you live in it every day and you know what's right and wrong. Go get 'em!

Maybe you can go see a general surgeon who's familiar with patastomal hernia for a consult and see what they say. 

Is there a way to redo your stoma and close that one up? 

My Ostomy Journey: Kimberly | Hollister

Hi Gemini, welcome to the site. Like Beth said, you need to find a different gastroenterology health care team. When I had my last blockage and got it cleared at the hospital, the surgeon came in and said I needed to be scoped to see why I was getting blocked. As it turned out, it was scar tissue from Crohn's, and surgery was set up and done. So, I'm surprised they didn't do a scope if the issue was resolved.

Have you gone to the University of Philly? I think it's called U.P.A.

When you say northeastern PA.

That's still a huge area. Are you talking about Delaware Water Gap? Rt 80.

I had this, and it resulted in frequent bowel obstructions. The surgeon I chose was Dr. Benjamin Poulose at Ohio State. He is the chair of Abdominal Reconstruction. He basically narrowed the muscle opening for the stoma, so the intestines can't push through anymore. It has been 6 months now, and nothing has recurred, despite heavy weight training. Good luck!