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anyone recommend surgery?

Posted , 9 users are following.

bustergut1
bustergut1

Hi I became ill in June 2013 was diagnosed with UC in September 2013. I have been on steroids high to low & back to high dosages since then. Had pentasa foam, pentasa tablets, azathioprine,  Humira & now infliximab. Every time my steroid dosage becomes lower I bleed & ended up in hospital just before Christmas. I have had diarrhoea since June 2013! My consultant says i have never been in remission & I should consider surgery. Has anyone any ideas or advice. I'm really fed up with this but surgery is scarey & drastic. Anyone been in same situation & would recommend surgery?

1 like, 35 replies

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  • sillip2007
    sillip2007 bustergut1

    Posted

    Hi Bustergut1

    I am pretty much at the same stage as you.  I have built up an intolerance to all drugs and infliximab and just started Adalimumab (Humira).  My consultant is usually adverse to surgery but feels that we have reached a point whereby surgery could be the best option for me.  I also suffered a Pulmonary Embolism in November and it looks like this may have come from my UC as I had no DVT symptoms.

    Surgery for me would prevent me from having another PE in the future aswell.  

    I have been reading different blogs and forums but the more I read, the more I become nervous about it all.

    I do know that a positive mind makes for a positive recovery and people that have had the surgery have never looked back, in respect of being able to eat and not having to run to the loo every 5 minutes.

    Good luck with whatever you decide to do.

    Sue

  • sheila91262
    sheila91262 bustergut1

    Posted

    Hi I am sorry to hear your problems.

    My son was in your position in December 13 after being diagnosed in October 13. There are lots of posts I have written on UC. There are also lots of posts by people in your position or further on who have had the surgery. My son had an emergency illeostomy after the doctors waited too long and he perforated in 2 places. Luckily he was in hosp when it happened and the surgeon was on standby.

    He has recovered well and eats anything and copes well with the stoma and mucous fistula. Do speak to your docs about possible reversal in the future. My son has started that process at John Radcliffe Hosp Oxford.

    Remember being pain and disease free is great after the pain and symptoms of UC. He has opted for reversal because he is so sporty and because it is possible.

    Good luck to you.

  • kerry_63543
    kerry_63543 bustergut1

    Posted

    Hi, yep I'm in ur boat also! Gets you to rock bottom hey?? I've been 4 years an still no control or reimission, hav to young children under 4 , trying to work part time always bloody liquid stool rushing to go with abdo pain many times incontient!! I'm also dependent on steriods I get to 20 and start to get really bad, on mezalazine and started three weeks ago methotrexate ! But I'm now at an all time low going every 5 mins for 48 hrs day an night scared to eat even drink coz hav to rush, now in hospital having iv fluid, steriods and ab. Waiting for plan Monday! It seems I hav to really push these Drs to get somewhere I be only now last month changed to a gastro medic I was under a surgical team errrr prob why it's got to this?? So fed up!!! Sorry to go on, but good to vent to others in same position, I feel my family just don't get it 😞
  • bustergut1
    bustergut1

    Posted

    Sorry haven't posted my own question before & then tried to reply to other contributors so don't know if I've done this wrong! Thanks for all your replies. I appreciate any support. It's good in a horrible way to hear other people in the same situation. Some people worse than me & still struggling on. I don't understand this illness. Why can't we know what causes it & why can't it be controlled? I don't think I'm bad enough to need surgery but perhaps I'm in denial? Had lots of stress in the last 18 months perhaps as time goes on & things settle my illness will as well? 
  • Maryjo
    Maryjo bustergut1

    Posted

    Hi ...I have uc over 25 years and am going for surgery Friday coming. I think of all the months over all the years I have wasted being ill or just not up to a level of energy even ! I am fed up of running at about 40 to 60%  of how I should be. I have read so many peoples experiences on so many forums and the greatest majority have been very positive . I do think u have good to b in a good and accepting state of mind when u go for surgery and I hope I have reached that place. Only thing I'm Prob a bit jittery about the surgery . I'm just thinking all being well I will have it behind me this day week ! As long as it's successful and good post op period and I can manage my stoma well I will b thankful ! MJ
    • sillip2007
      sillip2007 Maryjo

      Posted

      Good Luck Maryjo with your operation on Friday.
    • Maryjo
      Maryjo sillip2007

      Posted

      Hi......thank u for that.... Be nice to have it behind me 😊 MJ
    • bustergut1
      bustergut1 Maryjo

      Posted

      Hi maryjo sorry I didn't reply sooner I've  been unwell & at the clinic. By now you've probably had your surgery. I hope it went well. You are free from all the illness! I am facing surgery & although apprehensive I know I can't carry on as I am. We have to be brave & make the right decision. Get well soon x
    • Maryjo
      Maryjo bustergut1

      Posted

      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 . To date am very happy and rid of my crippling cramps lol x
  • 2daloo
    2daloo bustergut1

    Posted

    Hi Buster,

    Have you recently packed up smoking? If so, Google search "can nicotine cure colitis" have a read make up your own mind and get back to me. Im in the same boat as all of us on this site, rushing to the loo 15/20 times a day blood, mucus the full nine yards.And the meds just ain't doing it for me.

    Chat soon Terry.

    • sheila91262
      sheila91262 2daloo

      Posted

      Hi all, They say that there are new drugs and treatments being developed all the time but there are so many people out there with this disease and struggling to cope with the problems, not only the symptoms but the also the sideaffects as well. We were told that 2 thirds of patients have surgery either almost straight away because the disease is so severe or after a while as life is too difficult with so many flare ups. At least if you choose surgery then you can plan what happens and have keyhole surgery if feasible.

      Good luck all.

    • bustergut1
      bustergut1 2daloo

      Posted

      Hi Terry & all on discussion ,

      no, I've never smoked. Ok, so for anyone out there not responding to any drugs you could be facing surgery like me? Had the most clear & informative meeting yesterday with doctor & consultant at ibd clinic. I've been on steroids since September 2013 & ill since June 2013. Tried all the medications & nothing putting me into remission. I was determined Not to have surgery but now it's coming up for 2 years, diarrhoea ,blood, mucus, urgency & now incontinent. I said to doctors I feel like I'm taking the easy way out to which the astonished doctors replied just have a look at pics of your bowel on our computer. My bowel is damaged, unhealthy & is not going to get better quite the reverse. I can't stay on steroids because they also damage your body & can shorten your life. So what I realised is while we all try to cope with our condition, try different drugs, start or stop smoking & change our diets or don't eat, we forget that inside our body is a bowed that is very sick. I've had a wake up call. I am going to have surgery because I don't want to reach emergency situation & also want my life back. If I could really have what I wanted it would be Not to have UC but there's no point dwelling on that now. Hope medications work for other people but if not don't carry on being ill life's too short! Barbara x

    • 2daloo
      2daloo bustergut1

      Posted

      Hi Barbara,

      That was quiet a sad read! But as you have said you have had enough and its time for hopefully a new begining for you. Seems like you are maybe one of the unlucky few that has'nt developed UC seeing as you are a non-smoker. Well dont start now because it wont work! From what i have read on the internet it only or maybe works for ex-smokers. I really dont want to go back on the ciggies after not having one for over 3 years now but i soooooo desperate to get my life back if the patches and the vaping thing dont work for me i may have to consider it. The best of luck to you and fingers crossed that all goes well on your up and coming and possibly life changing op. Bless your heart.

      Terry x

  • bustergut1
    bustergut1

    Posted

    Was going to see stoma nurse thiis morning but have had a fall & now have a broken left wrist! Grateful  as am right handed & a broken wrist & trips to the loo tricky! Am due for second vedolizumab infusion next Tuesday so will have one arm plaster & in the other with canula! All good fun. Can't drive now for at least six weeks & have new granddaughter to visit. Why do these things happen? 
    • sillip2007
      sillip2007 bustergut1

      Posted

      Morning Barbara

      Sorry to hear about your wrist.  How have you been, apart from the fall, since your first Vedolizumab?  Be good to know.  The adalimumab is still working ok for me at the moment, so fingers crossed this will stop another flare up.

      Take care

      Sue

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