Parastomal hernia IMMEDIATELY after surgery? Tips on hernia management?

[carinberk]

Hello fellow ostomates. I have Crohn's disease (and have had it for 30 years) and had a total proctocolectomy w end ileostomy in 2009. About a month ago, I had another foot of small intestine removed because of unresponsive disease/narrowing and the stoma was relocated to the other side of my abdomen because the skin around the stoma had become irritated/broken down. When I left the hospital after my most recent surgery (three days after the surgery itself), I had a large lump/bump next to the stoma. I assumed it was swelling from the surgery (I've never had a hernia before and wasn't particularly concerned it was that, since the surgery was so recent), so I tried icing it. It didn't go down, so at my postoperative visit with the surgeon two weeks later, I mentioned it to the medical student who saw me (the surgeon followed and spent approximately 2.5 minutes in the room with me, praising his own beautiful work and saying he wasn't concerned about any "swelling"). It has been a month now and it is still there, so I sent pictures over the hospital's portal to the surgeon and got a response from his nurse saying that it looked like a hernia. In the meantime, I feel vaguely queasy and full all the time and am not eating much and the area of the lump is somewhat discolored; I've come to believe that my digestive problems might be associated with this lump, if it is indeed a hernia. I have scheduled a follow-up with the surgeon on Jan 7, which he is back in the office from his holiday break, but I felt like I was treated so dismissively at my follow-up that I'm not sure I have a lot of confidence in him.

Has anyone ever left the hospital with a hernia after surgery? Any thoughts on how to manage it? I have a rigid coloplast hernia support belt that I've been trying to wear, but it actually leaves the area of the hernia more tender/painful, so I'm not sure if it might be doing harm? Does anyone have a favorite belt?

I have to say, and perhaps this is a stupid response, I feel absolutely crushed that I still can't eat after the surgery and that I have a hernia that has been in place almost from the time of the surgery itself. I feel like I was mistreated and perhaps mistakes were even made. I live an active life usually, with two small children and a husband who has MS and cannot handle the physical aspects of caring for them, so the hernia scares me. I want to go in and ask the surgeon to fix it, but I have read that surgical fixes like mesh aren't particularly reliable.

I'd be really grateful for any sympathetic or similar responses. I am not usually so emotional about disease-related things, but this has really knocked me for a loop. Thanks in advance! And happy new year!