Complications and Frustrations - Abscess before Reversal Surgery

Hello all. Just a bit of venting on my part. I'm just two weeks away from having my reversal surgery. I thought my complications were over after the skin around my stoma healed up and all my stitches dissolved or were pulled out.... boy was I wrong. After a month of wearing high-waisted clothing and maternity wear that wouldn't irritate my incision site... or my 'scar' as I refer to it, I decided to switch back to regular clothing. After all, I'd be living with the ileostomy for a while more yet and the ostomy nurse supposedly put my stoma in a good place so I could wear jeans. BAD FREAKING IDEA. 1) I was irritated to find I couldn't button or zip my pants as my pouch was in the way. "Can wear regular clothing" my ass. 2) My incision didn't like my normal low-rise and started to thicken and get wider. Not a big deal, I can deal with a small splotchy scar. WRONG. 3) My incision site therein started to grow more painful to the point I was back in nightgowns and laying down because sitting hurt... 4) Surprise surprise! That part of my incision site had not only been irritated, but was infected. Ladies and gentlemen, behold the negative side effects of an abscess. Pus and everything.

Luckily I've dealt with cystic acne before and found the most painful point of my incision site, and used a diabetic lancet to poke a hole and drain it myself. I massaged the painful tissue and applied my usual lavender oil (a natural topical antibiotic, it doesn't sting and is pleasantly pungent), and covered it with a cute little bandage. Awesome. The docs called me in, said I did a lovely job draining it and put me on antibiotics.

Problem solved, right? I thought so too.

Not two hours later the site goes black and green, and flakes. I automatically have nightmarish visions of necrosis and go to the emergency room since, hell, urgent care clinics here know nothing of ostomies, and the doctor on call was less than helpful. Luckily only the first layers of skin had died and after a swift and slightly painful debriding, I went home.

Now I'm just laying around, sleeping 14 hours a day with zero energy, a constant headache from one antibiotic, a bad taste in my mouth from another, and vomiting because of both. I think I preferred the abscess. It had the manners at least to not cause me to puke all over myself in the middle of the night.

I swear, if one more thing goes wrong, in the mere 2 1/2 months with an ostomy, I'll wave a white flag and just settle myself in the ER permanently. At least there I'll be drugged up enough not to care, or at least enough to feel a bit more like myself again. To be honest, I can't imagine living with an ileostomy for much longer than I am, it's so exhausting. I applaud and sympathize with anyone who has a permanent ostomy. I thought I was strong after battling severe total UC, but this? This is far out of my league. Hell I can wave off pneumonia, crippling menstrual cramps, or a colon that is completely ulcerous, even my 3-year war with c.diff... but this is probably my personal hell. I probably am too self-conscious of my bag and that is what makes it so hard. It was much easier before. With UC, I could become accustomed to pain, running to a toilet, even worrying over incontinence. Now I worry about all of the above since my jpouch is active, blowouts, stoma dermatitis, an embarrassing sound coming from my red tummy friend, and feces leaking onto my clothes when I decide to get out. Seriously, to all with ostomies, and all those on ostomates... I don't know how we make it day to day.

Well... I suppose I do have one or two good things to put out there. 4 days without my hydromorphone for pain. No withdrawal symptoms or nightmares from it. And I'm finally off prednisone for the first time in 5 years. Yay! I will be so happy once I'm recovered from my reversal and can start up school or a job. I know school is important but I'm so tired of being a big financial burden to my parents. Being 20 without disability, a job, or a degree, is not a very good thing.

Thanks for listening guys, I just have had too much on my chest lately.

We've all been right there, girl!!! That abscess thing is the pits - been there, done that. Regular clothes were a joke for me too. Praying for your successful reversal SOON!!!!

Thank you. I'm finding abscesses are more common than I originally thought. I still don't know why they bothered to tell me I can wear my jeans if I could only wear maternity pants. I probably wouldn't be half as slighted if they had just told me what to expect.

Hello Simiberry,Thanks for sharing your story. I can't begin to understand what you must be going through physically and emotionally but my thoughts are with you.I actually prefer to wear overalls /boiler suits as they have been the most comfortable thing to wear since I had the ostomy. My wife is the one that doesn't like me wearing them all the time and thinks I should be wearing 'normal' clothes. I keep telling her that she should be proud that it makes me look as if I work for a living! Best wishes Bill

Hey Simiberry, I always really enjoy reading your posts, you just let it all out and I know that's what we need sometimes! This post in particular brought a tear to my eye. I've spent quite a bit of time in the hospital and while there, I wanted nothing but to get out. But like you said, I've sometimes wished I was back in there so I could be drugged up to the nines, not have to change the bed when my bag leaks, and not have to wash all the clothes that are dirty! You sound like a really strong person and I was wondering if you have ever considered not having the reversal? At first, I was sure that I wanted it done, but now I've had it a few months, I'm not sure it's worth the effort! I have Crohn's and right now I'm enjoying not having my symptoms. If I had the reversal, I would have to be on tablets forever to stop it flaring up again and, to be quite honest, I'm not sure I can deal with that again!! X

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Hey Sophie, changing the sheets at 4am is never a personal favorite, especially when the boyfriend comes by and spends the night. He's understanding and sweet about it, but I still find it embarrassing. For me, this J-pouch surgery was a last resort to put my ulcerative colitis under control. No medicines worked for me. I think I will go through with the reversal, though, for more or less my sanity's sake. I'm very self-conscious of my pouch, and that's no good for anyone. I'll brave the hospital again, most definitely.

I can understand you being conscious about it. When I first came out of the hospital, I thought that everyone knew and was looking at me! My partner is quite good with the bed sheets, he tends to do it for me while I go and sort myself out! x

Hi everyone, my father is a cancer patient and they have an organization whose members are wearing colostomy bags. Can anyone here help them to give free colostomy bags? Thanks...