Crohn's Disease Forum » Surgery » Stoma Subforum » Rough recovery from surgery

01-30-2016, 05:14 AM   #1
Join Date: Feb 2015
Rough recovery from surgery

I had an ileostomy done on 20th of this month and for the first few days while I was is hospital everything was going great and on the up. But since being back home I seem to have countless issues and I'm just getting a little scared and upset that I don't seem to be getting better anymore.

Since being home I developed a urinary infection which doesn't help! ( I'm now on antibiotics). I also noticed that I have got separation of my skin and stoma which scared the life out of me! I am seeing my nurse on Monday to hopefully sort it out but I'm really aware of stool getting in there and my stoma can be quite painful, stinging and itchy at times.

I am also malnourished so I have oral thrush and mouth ulcers and have been finding it hard to get rid of a cold. My muscles in my back are in pieces as I have been unable to lie flat 1) I can't get back up 2) it hurts my stoma. Because of this I am finding it difficult to sleep and I am unable to get comfortable plus I have been setting my alarm for 4am ( unless I am up till then anyway) to empty my bag as I do not want it to leak or explode in my sleep.

I've also been experiencing rectum issues. I have uncomfortable pressure all day from sitting on some small hemmorroids, but atm I am sit on my side without it irritating my stoma. But I've been getting the urge for a bm several times a day ( which I expected) but rather than seeing mucus, I am seeing a cloudy red water. It started on the day I was discharged and I told my surgeon and he said its normal. But the blood worries me. Also this morning I felt a large amount of pressure, went to the bathroom and fresh blood poured out onto the tissue along with a blob of blood. I also have lower tummy pain. ( I still have my rectum sewn up, no colon)

I just don't know what is normal or not after surgery. No one told me what symptoms to expect and what I should look out for. I'm exhausted and yet I can't get comfortable and I'm tapering steroids so it's difficult to sleep anyway.

I just feel like it's one thing after another and I don't know what to do anymore. I knew what to expect with my IBD symptoms but I'm completely lost now and nothing is healing.
02-01-2016, 09:47 AM   #2
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Join Date: Jan 2015
Location: Fife Scotland

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Hell you are having a rotten time of it
I had my illeostomy done just over a year ago and I wasn't told what to expect either.
It's still very early days so I'm not surprised you have stomach pains, I was still taking paracetamol at the same stage.
Your body has taken a heck of a pounding, it takes a surprisingly long time to fully recover.
I can say that the rectal issues are normal, mine was really very painful when I needed to pass mucous ( I still have a rectal stump ) and I did pass a fair bit of blood, but it soon passed. I do still get the odd twinge and just go to the loo for a squeeze.
I wonder if what your seeing round your Stoma isn't just irritated skin, it can look very red right up against the Stoma and does look like red raw flesh, and would, if your not accustomed to it, look like the Stoma and skin had parted.
If you haven't got a good seal round the Stoma and pouch, this can happen very quickly, if it is just raw skin, using a mouldable seal should fix it.
I guess you just have to work through all your various issues one by one, hopefully the malnourishment will resolve itself, mine certainly did, and now I've put on too much weight !.
Like you I was really worried about getting a leak during the night and set my alarm to go off during the night, I never did have a leak and eventually, my guts slowed down enough that I can usually get a full 8 hours. You can also tinker about with when you eat, I usually have my evening meal early ( around 4pm ) which usually means I empty my pouch before bedtime.
You could also try flange extenders, which are just extra security in case you do get a leak, I slept on a towel for months just in case I had a leak.
I got a dog for my husband
It was a fair swap

Crohn's since 1988
Ileostomy since 12/12/14 and loving it.
Med free for now
02-01-2016, 10:30 AM   #3
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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I'm sorry your having a rough time.

As Grotbags mentioned, it's still VERY early in your recovery. It's major surgery.
I had my first ileostomy surgery in the mid 1980s. It will get better.

Keep in close contact with your stoma nurse. Your stoma will change over the coming months.

Sending you my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

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02-01-2016, 03:59 PM   #4
fuzzy butterfly
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Join Date: Jul 2015
Location: manchester, United Kingdom

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Hi marmalade, so sorry you are having such a rough time, it does take some getting used to, but things will get better. Keep in touch with your stoma nurse they are usually a great help in helping you get the right products that suit you n your stoma best. Hang in there. 💕

6yrs since dxd. 4yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
02-02-2016, 05:55 AM   #5
Join Date: Feb 2015
I saw my stoma nurse yesterday and I do have seperation she gave me some powder and paste and said it should start healing in a few weeks, so that has put my mind at ease! She also said I'm experiencing pain by my stoma because my stiches are dissolving and they are tugging everytime I moved. She offered to take them out but I was in so much pain by this point I chickened out!

Since the last post I have also developed a sore heat rash ( I hope) the starts on the left hand side of my chest and spreads around to the middle of my back so leaning on my left side is now painful. I have also developed a chesty cough with phlegm which isn't helpful after having abdominal surgery and I'm having mysterious lower abdominal pains ( where my colon used to be)

I just can't seem to catch a break! My bladder infection appears to have almost gone though so that's a plus!
02-02-2016, 11:57 AM   #6
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Join Date: Dec 2015
Location: Northwestern Ontario

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I went through this 15 years ago for a colostomy. It was rough and almost died from infection. Hang in there, life quality will improve with time. It is a big adjustment, hard at times, but I try to remember that it had to be done to save my life. While my life did not return to normal, I still engage in outdoor activities and cut and stack all the wood to heat my home as I could not possibly afford to heat with oil. Life can be good even with the bag.
02-03-2016, 01:46 PM   #7
Join Date: Feb 2015
Turns out my 'heat rash' is shingles and I may have also developed an anal abscess from the tube they stuck up my bum after surgery and left in too long. I'm seeing my surgeon now on Monday for an emergency appointment after speaking to my GP just to have a check over because of all the complications I am having.
02-03-2016, 01:55 PM   #8
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Location: Northwestern Ontario

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I hope the Shingles pass quickly.

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