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Panproctocolectomy with permanent ileostomy

Posted , 9 users are following.

Maryjo
Maryjo

Hi ... Yes I hav surgery behind me Friday past. I was mentally in good place for it . I was in theatre for approx 6 hrs and had it by keyhole . 5 pin prick holes and a really neat stoma and short suture line at my butt where they took my colon through and then stitched . My consultant told me my colon was extremely inflamed and he wondered how I had any function with it at all ,he could c no sign of any tumours thankfully , but will hav to wait for histology results to b sure to b sure...at least I know I made the right decision so I hav no misgivings about it . After theatre went to recovery for approx 6 hours where I was extremely well cared for . Pain relief is by epidural Which has worked well to date . I then returned to ward .. I had tea which I drank few mouthfuls of and toast of which I chewed 3 mouthfuls ...stops wind and gets system going .Very sleepy post anaesthetic ,dozed off and all nite and was relatively comfortable . I have a drip up ... I hav 1 drain from abdominal cavity , an epidural and a catheter all very comfortable . I was out sitting for hour yest morning . I had meals all day yest just 6 mouthfuls so I didn't sicken myself . Wind builds up easy and I discovered that having couple rich tea plain biScuits An hour b4 my meal and some water lifted wind and I didn't feel nauseated . Had visitor in afternoon , was back in bed then back out sitting for 3 hours yest evening . Slept fairly well last nite. Up and out washed and sitting for 9am and had breakfast . Stoma bag is operating , passing wind and some sticky matter , it appears ok . Day 2 have been able to eat low residue diet ... Pain has been well controlled with epidural and catheter running well. Drainage tube draining well from abdominal cavity. All in all feel well. Slept fairly well last night. Up this am had epidural down . Catheter removed , drip down showered and hair washed and feel so much better. Pain now controlled by OxyContin long action so am pleased with my progress. Managing stoma bag ok .

0 likes, 23 replies

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  • claire-mar29574
    claire-mar29574 Maryjo

    Posted

    Wow, sounds like you've really been through it..well done for staying strong, my uc isn't too bad fortunately..at the mo.

    Wish you all the best in your recovery...

    I know someone with chrons who is awaiting surgery..she has it real bad..

    Let us know how u get on in the future.

    Good luck

    😃 xx

    • Maryjo
      Maryjo claire-mar29574

      Posted

      Hi ... Shall keep all posted as it's comforting to no progress of others if anyone is contemplating it. When my consultant told me he did not no how I had any bowel function at all at least I was reassured I had made right choice but I should made It long time ago ! The thought of it is worse than the procedure ! X
  • jill18833
    jill18833 Maryjo

    Posted

    Hey MJ,so nice to hear from you,been on my mind last few days! So glad it's over for you and that you are comfortable and coping. Get well real quick and will speak again soon xxxxxx
    • Maryjo
      Maryjo jill18833

      Posted

      Yeah. Very long speech but put up details for anyone else contemplating it whilst details r all fresh in my mind lol xx
    • jill18833
      jill18833 Maryjo

      Posted

      Sure everyone appreciates it MJ...sleep well xx
  • chris91672
    chris91672 Maryjo

    Posted

    WELL DONE MARY!!

    The worst is over now, you can start to live your life again, so glad it went well.

    CW

    • Maryjo
      Maryjo chris91672

      Posted

      Hi Chris. Thank u. Into day 5 now and feel I turned corner today after few postnatal blips . Getting home Friday 😃. Take u r progressing well !

      MJ

  • sillip2007
    sillip2007 Maryjo

    Posted

    Hi Maryjo

    Glad your operation went well and that you are coping with your recovery. Thank you for keeping us informed with your progress which I personally find reassuing as I am currently discussing surgery this month, with my consultant.  

    All the best with the rest of your recovery and I hope that you get home soon.x

     

  • bustergut1
    bustergut1 Maryjo

    Posted

    Hi maryjo thank you so much for sharing your experience. First time I read it I was a bit scared but made myself read it several times & considering what you've been through the outcome is very positive for anyone contemplating surgery. I'm seeing my surgeon today. Not sure what questions I should be asking other than guarantee you'll get me well? I've already thought about the practical stuff at home like on line shopping, get help with housework etc. when I had hysterectomy over 10 years ago had no help & it was too stressful. On a very happy note my daughter is about to give birth any day (in early signs of labour as I write) & my daughter in law told me Sunday she's  expecting baby in November. Yay! If that's not an incentive to get well & live life I don't know what is! Just got to get the timing for surgery right now! Lol. 
    • sillip2007
      sillip2007 bustergut1

      Posted

      Hello Bustergut

      I hope your appointment with the surgeon goes well today and if you dont mind me asking, if you have thoughts about what things I can ask mine in a few weeks time, I would be very grateful.

      It would be great to have our symptoms vanish and be able to live normally again.

      It is good to read that Maryjo is doing well and is extremely positive about everything.  I am hoping to take some of her inspiration with me.  I need to positive in my thinking before embarking on the surgery.  I just need to know, that now I am not responding to any drugs and I have a featureless colon, if I continue the way I am, will I be doing more harm?  I have just come off infliximab IV and started on the Adalimumab injections so it wouls be good to see if that helps.

      Congratulations on (soon) becoming a grandparent x

    • bustergut1
      bustergut1 sillip2007

      Posted

      Hi sillip2007 thank you for the congratulations. I thought it would be nice to share some news other than bowels! Went to see the surgeon today took my husband with me & a notebook with questions. The surgeon was very nice & in talking covered most of my questions. Things like why do I need surgery? What's involved? How long is operation & recovery? How soon would the operation be? I ended up talking a lot at the beginning about me, my life & what was happening to me before the symptons began. I needed to offload this for some reason I don't know if I thought he'd say Ah, that's why you're ill, well we can easily fix this! You haven't really got U Colitis, you don't need an operation! He listened & said stress definitely plays a part in this disease, but because I started with it so severely & I haven't responded to any medication there's a lot of damage to my bowel. He said I don't think you realise how unwell you are. In my meeting he said there are 3 options for surgery for me. He drew a little picture of abdomen to explain.1. Removal of colon & a permanent stoma bag. Outcome no more U.Colitis! Yay! 2. Removal of bowel.stoma bag & a J pouch formed inside like a reservoir to connect to rectum later & reverse stoma bag. Outcome no stoma bag but trips to loo frequent & maybe urgent. This is surgeons least preferred for me as my muscles may be weak & I could have incontinence( as I have at times at the moment). 3. Complete removal of bowel, stoma bag & section of rectum left like a stump inside with top end stapled at top end so might reconnect later. Outcome reversal of stoma. as rectum can still be active with U Colitis will need ongoing checks. It was a lot to take in & at one point felt like we were talking about somebody else! I still can't believe this is happening to me. He is going to give me a date when I could have the operation, could be in a months time. I can accept that date or delay or refuse. I have asked to see the stoma nurse again. I have seen one already & they gave me an information pack & a  practice bag. I have also asked to meet  someone via the stoma team who has a stoma bag a will talk to me. I recommend you meet the stoma nurse before surgery. It is entirely my decision which operation I go for & whether I have this op. When I came out of room had a few tears. I guess I'm worried that I'll have the stoma bag but still have colitis. They have told me I'll be rid of it. So My take on it at the moment is have the op & get on with my life. As for the reversal of stoma I'm not sure knowing my luck I'll get ill again if passing waste through rectum! I've had a full hysterectomy about 12 years again so am no stranger to operations & I was sad but also glad to get rid of my womb! Now they'll be nothing left inside! Very strange concept. Hope this hasn't worried you. You're advice might be different. My other doctor said at the clinic last Thursday that in the past 8 years that he's been helping patients with colitis no one has ever come back after surgery & said they wish they hadn't had it. 

      I guess once the op is over & I have my stoma bag its nobody business except mine. Lol! 

       

    • Maryjo
      Maryjo bustergut1

      Posted

      U hav lots to look forward to ! I'm now into day 4. Developed a uti yesterday ......post effects of having a catheter in but I'm now on abs so hopefully should settle. Got trapped wind today but these r usually hiccups that can develop along the way. I had stoma nurse into showing me my pack and how to cut opening for bag. That wAs the easy bit ! Lol so shall c what tomoro brings 😊 x
    • sillip2007
      sillip2007 bustergut1

      Posted

      Dear Bustergut,

      Thank you for sharing the information, following on from your appointment yesterday.  I am sure your head is still in a spin!  When I have my appointment I will make sure I also take a note pad as I am sure somethings will go in one ear and out the other...

      Good luck with whatever decision you chose to take.  Oh by the way....any sign of 'baby' yet? x

       

    • bustergut1
      bustergut1 sillip2007

      Posted

      Hi sillip2007 no baby yet or even trying to make appearance! Thought of some more obvious questions I should have asked so put these to Maryjo.

      im still not really registring that this is happening to me. Not good timing!

      Barbara.

  • bustergut1
    bustergut1 Maryjo

    Posted

    Hi maryjo wow only a few days in & you're doing so well. I saw my surgeon & asked questions but then realised today there were some obvious questions forgot to ask! Can you tell me when they do keyhole surgery where they go in? Do you have a stoma bag attached when you wake up from op? Do they control pain discomfort? What should I take with me? Sorry so many probably silly questions. 
    • Maryjo
      Maryjo bustergut1

      Posted

      Hi. ... No those r all very important questions . I have 5 tiny pin prick wounds on my tummy where the instruments go in. It is actually amazing how they get them into something so tiny. After surgery they have small piece of tape on each of them which works its way off with showering . Then ther is the stoma itself and my colon rectum were all taken through my anus and it is then stitched up so I minimal scarring which is great. Pain relief I had by epidural if Which is very effective . Had it for bout 60 hours. U hav catheter in for urine and u r able to move ur legs . U hav a clear bag over ur ileostomy so staff can monitor ur output colour and texture. U feel little to no pain and on day 3 after I had it out I was able to have 12 hour long acting morphine tablet and if need be

      to top up the other a short acting morphine tablet and paracetamol

      which I do not rate as a great painkiller . I took long lasting 10 am and 10pm approx. short acting I took bout 2pm and 6-7 pm and bout 3am . Do not do without regular pain relief . It makes life so much easier. I developed a uti after I got catheter out which was very very painful as I think my bladder also went into spasm ... It doesn't happen to everyone and I got started on antibiotics and now feel so much better . Stoma nurse shows u how to change ur bag etc. It's actually been very easy that part. Trapped wind in ur tummy and upper part of back was bothersome but I got peppermint capsules for it . I'm getting home today which is day 6 following surgery. I was admitted this day week ago so time has flown. Re the stoma there r some utube sites wher guys and girls show u how to change and care for them clothes to wear etc. They r very good. I watched quite a few. Knowledge is power and u should self empower urself b4 surgery and self acceptance of the situation helps ur head deal with it so much better . Even though I'm not long over surgery I feel much better than b4 . If u hav queries feel free to ask me anything anytime x MJ

    • Maryjo
      Maryjo bustergut1

      Posted

      Sorry forgot to answer what to take with u. --- usual toilet bag stuff I got a simple shower gel and added 20 drops t tree oil and 5 drops lavender oil and shake well to keep bugs away off ur skin. 10 pairs pants , bed socks , nightdresses and pyjamas ... I actually wore hospital gown first 5 days saves on laundering ur own lol. Few towels , big face cloth, shower wash puff , moisturiser hand cream etc. Eye mask for nite time with all the lights and ear sponges block out noise. U really only need one them as one ear is usually on the pillow which cuts out noise lol. I had some relaxing music on my fone which was great to listen to at nite to chill u out b4 sleep or at any time u wer feeling uptight . It was prob day 3 by time I needed it . Magazines .. I had book and sudoku but wasn't able to concentrate on it . Make sure u eat as soon as possible after surgery even if it's only couple mouthfuls and some t or water or whatever to keep ur system going and keep wind out of ur tummy. Take some plain biscuits in too. I hav been eating all my meals but still lost weight and realised after I had seen dietitian I should had snacks in with me ! Slippers cardigan and dressing gown. Tissues. Baby wipes . Think that's bout it. If think of anything els will tell u x MJ
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