Red raw skin – my body’s rejects another ostomy appliance

Right now it’s 1.25am. I’m sat propped up in bed, exhausted, nauseated and feeling groggy as hell. I probably look like I’ve been dragged through a hedge backwards at least 15 times, and would hate it if any firemen or police needed to break into my flat and see me this way. Lets just say thank god my boyfriend isn’t here to see me like this – he would probably fall out of bed in fright of waking up next to the monster from the black lagoon, and, to be honest that swamp creature is probably better groomed than me right now.

I feel like I am slowly going back to square one. Tonight, and last night, feel like the evenings of days gone by. Tonight feels like the weeks following my operation; where I couldn’t lie flat; had to stay perfectly still all night; lived in fear of explosions and leaks; and could feel every tug and pump of my tired and hacked up bowel – oh, and how can we forget, the agonising skin problems. 

Most of that was caused by my mucus fistula, which has thankfully now departed, but – if you can bear it  – you can read about that nightmare here.

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Ok, so things are nowhere near as bad as they used to be, and I feel pretty weedy for moaning about a few nights of sleep deprivation, for years I survived on potentially two-three hours a night if I was lucky! But having got used to living a slightly average life this is starting to feel like torture.

I used to get so little sleep that my nighttimes were almost as productive as my working day. While my boyfriend slept soundly next to me I would pain my nails, read novels, write blogs, record video blogs, write stories up and go into the other room to wash pots and dust etc. Tonight I have started to do the same. But, as I’m no longer used to this lack of sleep (well I am now, for the first time since I was a teen used to more than four hours, be it broken by toilet breaks, of sleep a night), I’m going to be a waste of space by lunchtime at work tomorrow. 

If you’ve been following my pretty feeble attempts at writing my blog while balancing a hectic work schedule and trying to help my boyfriend move into his new house (sob) you will know that I have had a fair few infections (rather unpleasant) ones recently, but apart from that things, health wise anyway, have been finally looking up. But over the past week or so I’ve started to feel run down, exhausted and, to un-sugarcoat things, shit! 

My skin tonight!! see what I mean

My skin tonight!! see what I mean

A lot has got to be said for the fact that I have managed to go without a single day off sick since I returned to work following my operation. Ok, so I don’t get some sort of medal or certificate for that (boo, I totally should!) but I feel pretty proud. But now the signs are starting to show that going at this hell-for-leather might not have been the best thing to do. But, there again, this happens every time I’m starting to get well, so I guess somethings will just never change.

My problem tonight is my skin. It had to happen but my skin has decided to reject my ostomy appliance. You would think this was something that could be easily fixed. WRONG. For most people it is, but I have rejected each and every one that my stoma nurse has tried – this was the only one that didn’t cause a very unsightly and painful rash. Now my body has decided it wants some drama, and decided that it is time to throw a paddy. This is not unusual. My body can’t live without drama, it doesn’t enjoy being well, it likes to be at the centre of attention. And right now it is dancing around in a sparkly spandex suit shouting ay attention to me, look at me, look what happens when you ignore me – and I’m having to sit up and take notice.

I’ve always struggled with my skin, especially around my stoma and other more intimate areas. It has been far, far worse than this in the past. But this time I just can’t handle it. My skin is oozing like crazy, and it looks almost burnt. My bags are struggling to stay on due to how damaged my skin is, and the wound is weeping all over the appliance in a truly revolting manner, which is making me feel smelly and sick.

I feel like I can constantly smell it. I think the smell simply gets in my nostrils and I can’t get it out, meaning I’m constantly paranoid that I’m having a leak, and that other people can smell it – most of the time it is other people farting or drains! 

I’ve changed my appliance to a smaller one for tonight, in the hope of drying out some of the skin, but I’m struggling to sleep. I can feel the itching starting to creep in and I’m terrified I’m going to end up like a recovering crack addict wearing mittens on my hands to stop me itching like I had to last summer during the heatwave to stop me getting at my weeping surgical scar. I simply can’t stop going at it; god knows what people during the day think I’m doing – I don’t want them to think I have lice, or worse!!

I can’t leave the bag off for even a second as my stoma seems to wait for the very moment of liberation to go into overdrive. The only time I can get any sort of relief is when I’m in the shower letting the water seep down into the bag and wash the build up away.

So I think the time has come to give in. Tomorrow I will ring my stoma nurse and get an appointment to try and get this sorted. I want to get some sleep and to stop living in fear of my bags simply sliding off, and wanting to walk around with a peg on my nose. Unfortunately, I think me and my Manuka honey bags (which I’ve been literally attached to for about a year) are going to have to finally wave goodbye, that is before I end up in court for indecent exposure, stripping off and jumping into a nearby fountain simply to ease the non stop itch. I don’t fancy that one going in the press!

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5 thoughts on “Red raw skin – my body’s rejects another ostomy appliance

  1. I’m sorry to hear you’re feeling so rough. I’m a fellow young Crohney and bag lady and I can appreciate what you mean about Crohn’s not letting you ignore it for long! I’m currently still up because I have a Uni deadline tomorrow, which I don’t think I’m going to meet due to my symptoms getting worse again over the last few weeks. I think you’re doing amazingly well and you should be really proud of getting back in to work so quickly. I also have sensitive skin and it seems to get more aggravated with the bags in the summer when it’s hot. I noticed that salts have bought out a new bag with aloe Vera in it that might help? When the skin around my bag was really sore covering it with the secuplast hydro aloe strips really helped mine. I also found putting aloe Vera gel on it and drying it in front of a fan is really cooling and helped to reduce the inflammation and it dries slightly tacky so you can do that before putting the bag back on. And dabbing calamine lotion on can help the itch. When my skin is weepy I found putting some soft Tesco microfibre cloths over the skin under my underwear was quite absorbent and soft and comfy too. I hope you get some relief and things improve. Your blog is great.

    • Thank you so much.
      I’m really sorry about what you are going through, it is really hard when you are struggling at uni but even worse when you’ve got a condition like this to put up with too. I was seriously ill in my final year of uni – it was seriously hard just to graduate. You will get there I promise and you will be surprised what strength you have 🙂
      I have got some scalp cream which is helping – thank god.
      Keep me posted – let me know how uni goes.
      Rachel

  2. have you tried aloe vera gel on the skin, i know people have said that has helped with irritated skin around the stoma bags, also bathing without the bag on to ease the skin, not worrying if the stoma starts working

  3. An excellent way to eliminate possible offensive odors, is to include cranberry juice in your diet.
    Im an American and has an colostomy years ago. One of the first things shared with me was the cranberry juice trick. It works in top fashion.
    God bless you,
    Michael

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