Permanent ileostomy recovery time

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Hello

I had UC for 15 yes and had a j pouch for 13 years. It never really worked well and ended up requesting my surgeon to let me go back to a stomach. 2 weeks ago I had the pouch and rectum completely removed, yes it was painful but am off pain killers now and have started walking around the block and a bit further everyday. I am really pleased with my stoma now, it has been the best thing I have ever done, no pain, no rushing for the loo. I can sleep, I have never slept so much. What I want to know is when can I start doing things, you know like lifting the kettle for starters! I haven't been given specific exercises or instructions on when I can do what. I want to get back to normal family, you life with husband and kids, what is everyone else's experience. I have looked on line but tend to end up on sites selling stoma products which aren't really helpful. It would be great to hear from anyone that has been there or going to be there. Thank you in advance. Alison

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  • Posted

    Hi Alison

    I haven't got a permanent but had my op in sept 2015 and have a baby boy who as you can imagine was desperate to pick up still I did as I was told and waited for at least 5 weeks but I would say by the 6th week you will be able to lift the kettle etc what you are doing is great little more day by day just don't over do it as its only been 2 weeks now I'm back to normal sorry to hear the j pouch didn't work for you but great news that you will have no worries and will be able to sleep good luck X

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    • Posted

      It must have been very hard not picking up your baby, both for you and him. I know it's only two weeks but I am going stir crazy. I have 2 teenagers and it's tricky getting them to behave at the best of times, especially since they know they can get away with stuff☺ pouch surgery has moved on good luck with yours. I think I was just unlucky. If it works it can be life changing. I am really looking forward to making myself a proper brew! Thank you x
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    • Posted

      Hi Alison

      It was very hard as he is my first and was only 6 months at the time of my op still it's given me my life back so just keep in mind once you are recovered you can enjoy life to the full remember early stages of recovery you are more prone for hernias so take it easy I'm normally 100 miles an hour but the thought of more problems made me take my time you can get these support belts I can't say the name on here as it will get blocked but do some research keep us posted on how you get on xx

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  • Posted

    I'm waiting on the same operation...but the surgeons dont seem to think its urgent.

    From my previous ops, stoma after my colon removed then the reversal i was up and about after a few weeks, but took things as it came. I wasn't heavy lifting or anything strenous for months afterwards, but was driving after 6 weeks and doing pretty much most normals stuff.

    Your body soon tells you if youve over done it...

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    • Posted

      Hi Jon, it's good you can take your time. It really is the best thing I have done. No more rushing to the bathroom, no urgency, no interruptted sleep. Finally I don't have colitis. I can wait 6 weeks before I drive. You are quite right I am just going to take my time. Thanks
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    • Posted

      Hi Alison

      So did you suffer bad before the j pouch and having 13 years was it always difficult to manage that's my fear I was so ill Toliet up to 20 times per day and heavily pregnant which my flare never went until i had my colon removed.. Also did you take any medication as I was on everything and wouldn't ever want to do that again lost my hair had hives night sweats life was a living nightmare.. Having a stoma life is so much easier and stress/ drug free any tips or advice would be great X

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    • Posted

      Hi Rachel le

      Yes I was on everything going before my original surgery. At the time treatment for colitis was pretty minimal. Steroids and mesalazine. I was in constant flare, the only time I was well was when I breastfed my youngest. So much so that I kept it up for a year, not sure what was going on but it kept my symptoms at bay. It was only after my second was born that I got seriously ill, I went down to about 36kilos. Not good. Once I got the j pouch I had a few weeks where things improved but then very quickly I got pouch it is. The rectum became very sore and still had ulcers. I think if the rectum had been removed I might have got on better. There wasn't much that could be done other than anti biotic, I was on them almost permanentlyrics, I was going to the toilet 10 to 15 times a day. I found it couldn't sleep at night, anxiety about the pouch failing and just going to the bathroom. I was completely exhausted. Where necessary I asked to go back to a stomach, had to jump through lots of hoops. I took VSL a prebiotic, very hard to get, it didn't work. A period of very intensive antibiotics, ciproflaxen and metronidazole. I felt awful, terrible side effects effects, the worst being constant stomach cramps and nausea. I didn't lose my hair fortunately but I wouldn't want to go back to that period of my life. As you say life with a stomach, even after just 2 weeks or so has changed my life for the better. Obviously I have pain from the surgery but no colitis pain at all. I feel free for the first time in in over a decade. I take 8 loperimide a day but that is no hardship. I have never met in person anyone else with a pouch. So really only my own experience go on. Having the stoma is easy and not to put to fine point on it access is much more straightforward. I can see my skin and look after it more effectively. Some people must have had success i am sure, but for me I wish I had done this sooner. If I were you in would get as much I formation as possible, see if you can find out howhat many pouches your surgeon has done, success rates that sort of thing. It would be good to know whatever you decide, good luck Alison

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    • Posted

      Progress at my end already! Hassled the surgeons and I now have my pre-op on Thursday for the op next week! 

      Looking forward to to no more rushing to the toilet and getting some life back again.

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    • Posted

      Thank your for sharing your story with me means a lot since being on this forum feel like I've made some faceless friends but great support and advice I wish you all the best xx my friend I've met along the way since my stoma has had hers for 23 years now and lives very happily so no more pain and sleepless nights you have your life back and live it to the full!! Take care X
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    • Posted

      Hi Alison

      Sorry for my late reply thank you so much for taking the time to explain your journey so far sounds like you have had a tough 13 years if not longer did you have your babies before the j pouch may I ask ?

      Your advice and help is great much appreciated and day by day you will feel better and be like you did 15 years ago I never thought I would ever feel my old self but I do now it's very liberating xx

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    • Posted

      Hi Rachelle thanks again for your support. Regarding my children, I was told that I had little chance of having children as I was so very ill. A friends wedding and a lot of gin resulted in child number one!☺. She really was a miracle baby as far as I was concerned. Colitis symp6were bad during my pregnancy, but as I mentioned before, as soon as I started breast feeding it was incredible. I was relatively well. I can not explain it. I kept it up for 12 months and then got pregnant with my son. The second time I was well during the pregnancy but had a serious flare after he was born which led to my initial surgery when he was 9 months old. My surgeon told me that having the pouch shouldn't affect my ability to have more children, but after years of trying I gave up. I honestly think it was more to do with the 2 emergency cesareans I had than the pouch that affected my fertility, just too much scar tissue I think.

      I know it's only been 3 weeks now, but I can see and feel that I might just have got my life back, I know there will be set backs but for now I feel good! You are right it is very liberating☺xx

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    • Posted

      Hi Alison thank you for sharing did make me smile I carried on 9 months of a flare while heavily pregnant and there after till I couldn't anymore I was so ill prisoner in my own home I think it's the mother instinct that kept us going for so long but I'm the same if I knew what I know now I would of done it earlier still it's still a big op to decide on..so maybe the time comes when it's meant to. Glad you are feeling better and wishing you all the best xxx
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  • Posted

    Hi Alison, hope you are healing well. Did you have open surgery or keyhole? Whatever way I suppose light exercise is in order. Did they say no driving for 6 weeks? My son had open ileostomy surgery so had rather painful recovery as abdo muscles cut. He walked as much as he could, which was what was recommended. He went back to work after about 4 weeks but then he was young and stubborn. I think you need to follow your body and do what you can. My son took painkillers as movement was painful.

    There are a few discussions on here post ileostomy. 

    I am sorry your pouch didn't work out, my son had his connected last July and it is very successful but then I think the treatment has moved on. He only uses toilet 3 to 4 times a day and is pain free and in control. His only problem is remembering to drink enough liquid and avoiding cramps.

    I wish you well, this UC business is a bi*ch isn't it?

    Sheila

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    • Posted

      Hi sheila, it started as keyhole but I had a lot of adhesions and sepsis so ended up with open surgery. I was a bit surprised when I woke to find a 2 hour op had turned into 8. I had an epidural which worked really well as pain relief for the first couple of days, then morphine am now down to the odd paracetamol, it is amazing how quickly the body recovers if you spend a lot of time sleeping! I am aiming to get back to work in 8 weeks, 6 weeks is impressive, your son must have recovered well. It looks like walking is the thing to do so I will keep up with that.

      It's great your sons pouch is working, it can be life changing.

      Yes UC is a complete effing bi@ch!

      I will look up ileostomy posts thanks.

      Alison

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    • Posted

      hii sheila

      sorry to hear about your son's age that he is very young to face all this.

      I just want to know that what type of ileostomy your son got at that time? do anyone know is end ileostomy reversible or it is permanent?

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    • Posted

      Hi Kang, He had an end ileostomy as his UC was so severe that he wasnt absorbing food and was losing lots of blood. He also perforated in 2 places. It was deemed temporary as they left the end of the colon, the rectum and all of its muscle. The end was brought out to the front as a mucous fistula which still had UC and produced mucous and some blood. The end of his small intestine was used to form the pouch and then this was joined to the rectum as the exit of the waste.  They removed all of the remaining colon so no UC and no more disease. Ask anything you like. He was operated on at John Radcliffe Oxford by Prof Mortenson who is world famous and helped to develop some of the pouch surgery techniques. They were excellent.

      He is now 12 months post j pouch and still doing fantastically well. 

      Do all remember IBD patients 3 x more likely to get DVT after surgery as my son did after his ileostomy.

      Good luck to all and keep us informed. 

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