Op 7th February now 3+ weeks post op

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Hi All, last Tuesday, 28th February, I was 3 weeks post op. Always had feeling in rectum after op that could pass something from there even though not connected to bowel anymore. Had pain from trapped wind & passed a lot of mucus. The consultant had mentioned before op that I

Might pass mucous but I was surprised & to be honest disappointed that it was a lot & I now had bag & rectum active. I wondered if it was 'draining' after op. At the stoma nurse appointment the next day I was told this was to be expected & sometimes could form a ball. So needed to be cleared. Mm, not sure I appreciated that Before the op. So, early days, but as least I've got the option later to reverse stoma or remove rectum that's left if it becomes troublesome. I certainly had the urge to pass something a lot last week, which reminded me of how it used to be not sure if could leave the house. Has anyone else experienced this? How do you deal with it?

The stoma nurse said my skin had healed really well & quickly after leak & burning week before. 'Stanley' the Stoma had shrunk considerably & also said that I'd cut the hole for the bag perfectly! Setting up home delivery of bags & supplies now & don't want to see me again until June.

So last night went to bed at 9.30pm, extremely early for me & started to wake early morning aware that my bag was inflated like an airship, but ignored it as was tired. Then awoke feeling wet inside pjs & bag was leaking, dramatically, more like an explosion. It was 5am so quick dash to the loo to get bag off & clean up & fit new bag. Managed it all in 20 mins.

New lesson learnt- don't ignore Stanley!

Apart from general aches & pains after op & feeling very fed up last week because hadn't been out, except hospital visits, all progressing well. Any more advice on what to expect or hints & tips welcome from those ' that have been there' welcomed. B x

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  • Posted

    Hiya - in my experience things will settle down. I'm operation plus 17 Months and pass something from my rectum 3 or 4 times a day. I'm not sure if you're a lady or a gent (I'm the latter) but I find going for a pee means having to sit down just in case there's something to pass, not always, perhaps 50% of the time. It's a minor inconvenience. I've had no issues managing the bag and get up once in the night to empty it. To be honest I could go through the night if I had a very light dinner. Only on couple of occasions has the bag partly peeled away but I've had no disasters and am confident with it. I eat a normal diet which for us includes lots of vegetables, fruit, fish, pasta, chicken etc. Only on one Occassion did I have the Crazy Zeppelin Syndrome after a supper of Baked Beans. I've actually eaten an Indian Meal on a few occasions without issue. I'm sure this is different for everyone. I'm sure it'll settle down for you and you'll grow in confidence. If you can try to get a flexible hernia belt; they're flesh coloured, stretchy and apart from the obvious help with the prevention of Hernias it hold the bag nicely to your stomach when you go out. You can get a prescription for this. I walked the dog after 4 weeks and started driving after 2. 

    Take care, I'm sure things will inprove.

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    • Posted

      Hi Darasdad1

      Thanks for your reply. I'm a female(60). I get the zeppelin most mornings! I do think it would be better Not to eat the main meal in the evening but easier said than done as husband still working & we've always done it like that. I also know I ate too much the other evening so need smaller amounts. I've got one of those flesh coloured stretchy bands for tummy but forgot about it.

      Your digestive system sounds stronger than mine as lots of things I couldn't eat before op.

      I've walked the dog at week 2 but not driven yet.

      I still need to drink more water!

      It doesn't come naturally to drink loads of water.

      B

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  • Posted

    Hey....glad to hear things are moving forward. To be honest having mucas coming out is not that bad, I've got blood every time....ive had it since my opp in Nov so the rectum will defiantly need to come out!

    I was told that I will still have the sensation to sit on the loo and go and that I should.

    And yes, never ignore an inflated bag.... I change mine in the evening now so I don't need to get up in the middle of the night, it's working well so far. I have had an incident like yourself where it was very inflated in the morning and I ignored it and the bag came away from my skin. Sometimes I just open the bag and let the gas out but the last time I did that I was half asleep and yep you guessed it...total mess everywhere! Lessons learnt I guess!

    Take it easy your still in early days, maybe go for walks everyday....

    Sx 😊

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    • Posted

      Hi Shal75

      Thanks for your reply. I'm still on steroids so once I'm steroid free I'll have to see if bleeding returns. Then I'll make decision regarding future of rectum.

      I put loads of questions pre op to stoma nurse but don't recall them saying still have to sit on loo because of mucous clearing. The consultant mentioned mucous & possibly bleeding but I thought that was if having a colitis flare in rectum. My fault for not understanding. If it's really troublesome or not to my liking I guess I have the option for final removal.

      Yes, I do need to go for walks each day but been feeling really tired. I asked stoma nurse if possibility of being anaemic & she said to contact my doctor for blood test if I thought I was. Thought they might do it at the hospital but no. I'll follow it up if continue to feel fatigue but early days I guess. B

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    • Posted

      Why have they kept you on the steroids?

      There are certain things they probably wouldn't tell you, I picked a lot up from forums and it kind of made sense.....i get a stomach ache sometimes like I used to when I need to 💩 go to the toilet pass some blood and I'm fine. Funny how that works!

      The nurse said I'm still bleeding as I may still have colitis in my rectum but I can't actually use anything, suppositories won't stay in!

      It's best to get a blood test done, since my opp I'm lacking in various vitamins especially iron.... they do usually do it at the hospital strange why they wouldnt! My GP is a bit hopeless in telling me if something is missing or I'm lacking!

      Hope you continue to improve.

      Sx 😊

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    • Posted

      Hi Shal75

      Been on steriods from September 2013- February 2016. Then October 2016 until now. No other drugs have brought me into remission. I was quite poorly before op. They wanted me not inflamed before op & had been reducing steriods from 60mg a day to 20mg. Held me at that before the op. Then increased to 30mg on discharge & been reducing every 5 days by 5mg. Presently at 15mg & reducing to 10mg tomorrow. Until steriods stopped, about a week before seeing consultant. Fingers crossed no bleeding as usually only get to 10 mg & then problems start.

      Didn't think it particularly helpful couldn't do blood test at hospital but guess stoma nurse didn't have authority to order one?! Surprised it's not part of a post op pre consultant check.

      I might follow it up with my doctor although maybe quicker to wait until see consultant. B

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  • Posted

    Hi Bustergut

    And welcome Stanley 😉 I agree with Darasdad same experience on a lot and mine 18 months and still have the urge and sometime pass some muscus however after the op it will happen quite a lot due to things need to settle which don't worry time is your greatest healer.. I had a 6 month old baby boy which I wasn't able to carry or drive for 5 weeks but it will go quick just don't overdo too soon.

    As for your bag yes I always empty at night in fear of leaking and it gets full and find it's more windy of a night as your body is relaxed when sleeping so for the sake of not an explosion best to get up annoying sometimes but better than the whole changing the bag and bed sheets.

    I find the more I eat the more I empty I love food so probably empty around 5-7 times in 24 hours that's even if I just eat 3 meals per day but to be honest you want it active than not as blockages are extremely painful.. make sure you chew really well and the only things I don't eat are mushrooms unless chopped in a processer and steak and runner beans and bean shoots be careful with skins tomatoes apples I'm sure you have been told this but for me I removed everything at the start then slowly added but if not sure just spit it out same for oranges I love them but afraid of them getting stuck so I chew then spit not the nicest but least you still get the goodness.

    My other tip I was told was get a plastic small jug as when emptying i fill it half way give it a swish and presto a nice clean stoma and bag but look everyone is different just do what works for you..

    Good luck and any thing else just ask.

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    • Posted

      Hi rachelle52846

      Thanks for your reply & advice. Hopefully things will settle as early days.

      I think your tip on washing bag out is really useful I wondered the other day if it was ok to do that. I empty the bag every time I go for a wee & always empty thoroughly before bedtime but a lot of filling up in the night & with air & that's probably due to main meal being in the evening. B

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    • Posted

      Hi B

      Your more than welcome just makes you feel cleaner obviously it could fill up 10 mins after but better than squeezing it out and I find it's got so much of an odour with water my only thing I would say is if you have just changed a bag and it fills up give it 30 mins so your mouldable ring and bag has had time to stick properly then washing out after is fine. Then went im out I just carry an empty water bottle with me.

      Yep my bag always fills at night beat running to the toilet every 5 mins though ..

      Hope you get on ok Remember practice makes perfect 👌

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