Struggling with Pain Relief and Post-Surgery Complications

Pain relief not working, at wit's end, and a few other problems too. I've had enough and don't want to live like this anymore.
Had surgery before Christmas to repair sphincter and perineum, but it got infected and ended up with a colostomy on New Year's Eve, a fabulous start to the year.
I have been on morphine as tramadol, Voltarol/diclofenac, and paracetamol didn't work.
Today, I have had feces leak from the bottom when the stoma is still working, which shocked me this morning. So now, I am scared of leaking when in social situations and being around my two very young children.
Why has this happened? Not only am I in severe pain, but now I have to worry about being incontinent when the stoma should have stopped the feces. It's not fair; I really am having a bad day and don't want to eat now, just in case it happens.
Hubby just gave me a cuddle and said he can smell poo on my breath. Feeling really bad, I don't want this to ruin my marriage or the rest of my life. Stoma nurse said she has heard of this happening with the loop variety of stoma. Just had enough and want this to end now. Aaaaaaaaaaaaaaaaaaaaaaaaaaaarrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrggggggggggggggggghhhhhhhhhh

jenaustin26,

That really sucks. I'm sorry you are going through this. You really need to speak to your doctor or surgeon and get this fixed. Perhaps your rectum needs to come out. I had a similar problem and I had to have my entire rectum removed. Pain stopped as did the leaking. After all, I wasn't using it anymore and I was at a higher risk for colon cancer as it runs in my family.

Please see your doctor and get this taken care of; you can't go on living like that. Until then, all I can suggest are Tena or Depends to avoid any embarrassing blowouts.

Good luck!

Jen - Your story seems very much like my own - you can find it on my blog - a bit long, but start at part 1. I have sent you a message too.

Rach xxx

Jen - Maybe you want to consider a different doctor. I put up with a miserable situation for years until my wife convinced me to go to the top doctor in the country. I did. I went to see Dr. Henry Janowitz at Mt. Sinai in NYC (RIP). He was one of the founders of the Crohn's & Colitis Foundation of America. Within a week I was feeling 100% better and the quality of my life went uphill ever since then. His rates were average, but he  gave me the whole hour exclusively with each visit and he knew all my issues. That was quite different from my previous gastroenterologist who scheduled 4 patients at a time as he bounced back and forth between examining rooms during the 15 minutes he alloted. Good doctors don't accept patient misery as a positive outcome. Look elsewhere if your MD isn't making you better. Good luck, and know you have caring friends here.

Thank you, people. I really just had a bad day; it started badly and went downhill from there, but thank you for your replies. They have made me see there is light at the end of the tunnel. x

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

Hi, maybe I am missing something here, so feel free to set me straight. You have a colostomy and you are experiencing some rectal discharge. If that is the case, then that is not surprising. The colostomy is looking after the processed food; the remaining rectum, although not connected, has mucous membranes which are active. The fecal material is, in fact, mucus and will be discharged through your rectum. It can be uncomfortable for sure, smelly like regular poo, and with other complications, I expect very uncomfortable, but rectal discharge after a colostomy in the form of processed mucus, and maybe some residual blood is common. But see your doctor for sure, and if he is giving you a brush off, look for another. All the best, Scotiaman.

I'm sorry you're having so much trouble. I know what it's like to feel like you're at the end of your rope. And living in chronic pain shades your whole world. I live with a lot of pain too. I have gotten better relief using a patch which supplies a constant steady stream of pain medication. Mine is a fentanyl/Duragesic patch and I supplement with oxycodone for breakthrough pain.

Just remember that there are choices in doctors and surgeons and don't accept answers like "this is just how it's going to be". A pain specialist may also be helpful for you. Also, by the way, often antidepressants are used to manage pain. They do a world of help for a lot of people. Hope this helps a little.

Thanks, LivingAndLearning. I have had a really sh*t day today.
It started with pancaking, which has made the site so sore I can't touch it, and it's weeping. I have very sensitive skin.
I cleaned it and put powder on, but it was too sore to wipe with Cavilon (skin protector wipe). I put the bag back on and have been in pain all day. Then, I sat down to eat some tea, and yuck, it starts to ooze out of the top side of my seal.
I was already really sore, and now it is worse than ever. What am I doing wrong? Too much powder, not enough Cavilon, or is it just that every time I go to eat, it starts to ooze and puts me off food? I am now scared to go out tomorrow night in case it happens again. Rant over, sorry guys.
PS: I can still taste poo, so I am guessing it's something I have eaten, as brushing my teeth hasn't helped.

I don't know what is going on with your breath, although I know when I was really ill I had chronic bad breath (but I also had ulcers in my esophagus).  Once the skin around your stoma is irritated, it is much harder to form a good seal.  It's a catch 22 because having a poor seal causes stool to come in contact with your skin which then irritates the skin more.  Your surgeon should be able to put you in contact with an ostomy nurse.  They are experts in getting the skin healed.  For me, I have found you really can't use much powder.  Put it on and then brush off as much as will come off.  My ostomy nurse told me the same thing.  I then use an adhesive paste and hold the base against my skin for several minutes before moving.  I have a spray to put on after the powder when the skin is irritated, but I find I don't get a good seal when I use it.  Ultimately, you have to prevent skin breakdown or catch it early and get professional help.  Take a deep breath and do what you can to relax.  I find a heating pad helps me a lot.  Sorry I don't have my magic wand today. lol

I don't know if this will be of any help but I found when I had problems with leaking, pancaking etc. a pouch with convexity solved that problem completely.  Haven't had any leaking since.
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I have a convex bag with a belt, and it's a harder seal, not as sore anymore, but I am scared of getting leaks, which will make me sore. However, I have just had my first 24 hours without changing, only emptying, and am a bit happier. I am really hoping that just spending an extra 10 minutes holding my bag on while lying down, so my tummy was flat, and I was able to get a better seal into my belly button. Thank you for your tips and hints; they have helped. I did use powder to dry up the weepiness but didn't use a Cavilon protector wipe and wonder if that could have been the problem. xxx