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colostomy with ileostomy and stoma

Posted , 4 users are following.

Shal75
Shal75

Looking for some advice and feedback from others who have had to have a ileostomy.

I've been bleeding since April 16 and tried everything to get it under control, my last option before surgery is to now try vedolizumab as an alternative to infliximab. But I'm preparing my self that I may need to have surgery to remove my colon!

I guess I'm just asking for any experiences - good and bad, that people have had and what I might have to expect after surgery and how have people coped with having a bag on the outside and not being able to go how nature intended.

Thanks in advance, slightly scared of having to face this now!

0 likes, 13 replies

13 Replies

  • Darasdad1
    Darasdad1 Shal75

    Posted

    Hi Shal - I had an Ileostomy a year ago almost to the day. To be honest I'd followed every course of drugs including a last ditch infusion of Infliximab and I ended up in a desperate state. Since the operation I've managed to get my life back on track and there's little I can't do now that I did before. I have an allotment, large garden, walk a boisterous dog, go fishing and am part of the village Marquee erection team. The recovery is slow and the surgery is about 5 hours. I eat what I want and the only nuisance is having to get up once in the night to empty my bag. I wear a flexible hernia belt under my clothes and now feel lost without it. My wife accepts my Stoma and we navigate around it. It is worth bearing in mind that you will be face with a later option too of either making the Stoma permanent or having a reconnection. Good luck. BTW it's likely you'll be drug free.

  • sheila91262
    sheila91262 Shal75

    Posted

    Hi Shal, sorry about your IBD. I have written loads on here about UC, stoma and j pouch as my son has been through the wars with this over the last 2 years. Can I ask you to read my notifications as i have gone into lots of detail and many people have written on there too. To summarise he is very healthy now and has a very successful j pouch and a normal pain free life. he looks well now as he was very underweight with the UC. Some people do not get treatment that works as well as he has but it can be a very positive outcome. 

    If we could learn from the past it would be that we would have gone to St Mark's London hosp at harrow at first diagnosis as most up to date. Or John Radcliffe Oxford are as good. My son's local hosp were rubbish in every way, just not enough info and he ended up with an emergency ileostomy. Also beware IBD sufferers are up to 3x more likely to get a DVT so research on this and ask questions if you have surgery. Best of luck and ask me anything you like, my son has no idea!! Sheila.

    • Shal75
      Shal75 sheila91262

      Posted

      Thanks both for your replies and experiences.

      Glad your doing so much better 3Darasdad1! Seems like things have got so much better.

      I think I've read one of your posts Sheila but been trying to find them all.

      My local hospital isn't bad but whenever I've had to be admitted I end up with another complication but I'll look up those hospitals and see if I can get a referral there.

      But what I did want to know was how does it feel after surgery, how easy or difficult is it to get used to and did you - Darasdad or your Son have any struggles when you got home? Unfortunately my family don't understand this illness, I've spent the whole day in bed as I'm bleeding constantly and become quite enemic and I've got no real support!

      Thanks.

    • Darasdad1
      Darasdad1 Shal75

      Posted

      It's major surgery and will knock you sideways. I drove after 8 days, walked the dog on my own after 3 weeks but did not lift anything heavy until after I'd been back to see the Surgeon after 3 Months. It's slow gradual improvement. Using and changing the bag is straightforward as is ordering supplies. You'll have the help of a Stoma Nurse. You will need support and time. It's a real shame those around you don't understand. I remember my Sister in Law insisting Manuka Honey would cure me. UC is a terrible thing.

    • Shal75
      Shal75 Darasdad1

      Posted

      I've had all sorts of wives tales, eat this drink this..... after a while it really does get annoying and I'm sure I'll have that after surgery too!

      I didn't realise the recovery process is quite so long! I've had my brain operated on twice for a removal of a cyst and this actually sounds worse in terms of what you can and can't do.

      Glad that there is a stoma nurse to at least offer some initial support.

      I was actually hoping I could be back to work as I've been of since June but sounds like I could be off for quite some time if they do decide I need surgery!

      😭

    • sheila91262
      sheila91262 Shal75

      Posted

      Hi, There is a facebook page where people share lots about their disease, it can be a bit scary reading but it shares positive things too. Crohn's & Colitis face book. Worth showing your family to help them understand. The reality is that people die from IBD when things go wrong. My son went into A&E as he was losing loads of blood and going to loo 20 times a day. He was so malnourished his body was shutting down, he may not have made it 24 hours later. He then perforated in 2 places when the meds didn't work quickly enough and they left him too long as they were trying to save his colon. As others have said, the ileostomy saved his life.

      If you have surgery by choice they can operate by keyhole surgery and recovery is quicker and less scarring. 

      In the search section on the right hand side put in J pouch, probably the most I have written, as I first researched about others experiences and then fed back  his progress. 

      When he had a stoma the most important thing was to drink plenty of liquid and not eat difficult to digest foods such as sweetcorn but he ate a normal diet really, sometimes eating veg that was cooked a little more so it was softer going through. The colon reabsorbs water from the food to go through to the kidneys instead of out the end of the colon and stores digested food. So you can do without it, the stoma will act as your new small storage and exit. 

      We were at first so upset for him to lose his colon but in the end it has been a wonderful result. He is disease and pain and medication free and leads a normal life. 

      Don't forget the DVT risk, he had a massive DVT after the ileostomy as the hosp didn't send him home with blood thinners and he could have died. Do ask, if you opt for surgery, they will inject an anti coagulation in hosp but not always see you as high risk at discharge. He has had 2 surgeries to sort out the after affects of the clot in his leg but it could have been avoided.

      Your GP can send you to have an iron infusion if you get too anaemic, do watch that. Sheila. 

    • Shal75
      Shal75 sheila91262

      Posted

      Thanks for the information/advice Sheila and sharing your Sons experiences. It's a lot to take in but I guess if I'm going to feel better than its worth considering. ?

  • rachelle52846
    rachelle52846 Shal75

    Posted

    Hi Shal75

    I had UC for 11 years always managed ok but had a major flare while pregnant at 7 months going to the toilet 20 times per day bleeding feeling like death it was a living nightmare I also went through the motions of medications prednisone humira enemas and so on they said my flare would go after birth but afraid it never did went on for a total of nine months was a prisoner in my own home with a new born by the time my baby was 6 months I ended up in hospital and spent 16 days at the uclh London I had my colon removed and was petrified of what was to come .. but a year on like the others have said life is so so much better !!

    My stoma saved my life yes I too have to empty once a night and it's not easy at first it's a lot to get your head round but time is your greatest healer after the op I drove after 3 weeks I didn't lift my baby till 5 weeks which was extremely difficult being a new mummy but that's over now and this year been on holiday twice swimming diving and even back to a bit of running the stoma nurses are amazing and if you follow what they say you will be ok about eating etc it's just baby steps .. but if someone said life on medications or with a bag let me tell you a bag is a doddle compared to all the other stuff I know you say about getting back to work but your health is the most important thing get that sorted and the rest will fall into place.

    I know it's so scary I did everything I could to avoid surgery but for me it was the writing on the wall and the best thing I too am looking to have a j pouch and reversal one day but with wanting another baby I've had to hold off .. I wish you all the luck and best for what's to come and my faceless friends on here have been so helpful and understanding so we are here to support you whatever happens take care Rachelle x

    • Shal75
      Shal75 rachelle52846

      Posted

      Ahh Rachelle, sounds like things are really great for you now after going through what sounds like hell and all the while being pregnant too! Amazing!

      I think sometimes you just need to know the good with the bad so you know what's to come and to be prepared.

      Thanks for the encouragement and reassurance. ?

    • rachelle52846
      rachelle52846 Shal75

      Posted

      Hi Shal75

      It was a dark time of my life I remember seeing my stoma which I named Tinker for the first time and it's a bit alienated this thing on your tummy and when I first changed my bag with my stoma nurse I thought I was going to faint ! I still get rare moments where I don't feel attractive but it's hopefully not forever but I definitely have more better days than bad you can't control the noise though which I just talk or cough over yes the farting noise which me and the Hubby laugh he's very supportive ..

      as for changing the bag etc it's like anything practise makes perfect at first I was like how do I do this can I will I leak etc .. but keep on top of it and don't neglect your stoma with cleaning and looking after your skin.. eating and chewing well is a major factor I had an slight obstruction on Sunday and was in agony but given that was the first time in 13 months I feel proud !! pain was awful but tinker started working again and the pain went .. and there are loads of waist belts or underwear to hold your bag in so tight clothing is more than possible no one will know .. x

    • rachelle52846
      rachelle52846 Darasdad1

      Posted

      Arh thanks Darasdad so is yours !! Glad you are doing well I'm still trying for a baby so keep your fingers crossed for me .. do you know what I find that amazes me the most that my 19 month little boy doesn't batter an eyelid when he sees my bag or tinker even got one of my bags the other day and tried to stick it on his tummy and also tries to help me while on the loo which obviously 🙄 is weird emptying and a toddler isn't ideal but so beautiful to see him accept that's just how I am x 🙏🙂

    • Shal75
      Shal75 rachelle52846

      Posted

      That's really lovely Rachelle, fingers and toes crossed for you! 💕

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