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Total Colectomy, now proctitis...need some help!

Posted , 8 users are following.

JonWHut
JonWHut

5 years ago I was diagnosed ith UC completly out of the blue...had no idea I had it! 7 days later I was blue lighted to hospital and had my entire colon removed. Had a Ileostomy until a reversal a year later. I hated the Ileostomy...

Any way now a few years down the line and I'm struggling. Proctitis flare ups, had steriods and on mezasaline, bit it doesn't seem to be making any difference. Bowel movements around 12+ per day with 3 or so at night.

So I'm knackered, down and tired of it all! 

Any words of wisdom??? Diet's that may help, anything else to try???

Waiting for an appointment with another specialist as the surgeon has passed me on...

Anything please???

0 likes, 18 replies

18 Replies

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  • DrColenzo
    DrColenzo JonWHut

    Posted

    Hi John,

    That is a bad set of luck you have there, I genuinely feel for you.

    Before someone erroneously mentions diet in a self-referential way, if you have a JPouch it will not make a difference as to what you eat as this is effectively an extension of your inner bowel and acts in the same way. Diet can make a difference in UC if you still have a colon and you are not in an acute phrase of disease but not when it comes to Proctitis, which is related but separate and in a way a remnant of the genetic condition that causes UC. Any mention of not eating x/y/z is wrong, plain wrong and will not help you.

    Rather, I would recommend how you feel not being on a stoma bag vs. taking the drugs that have nasty effects on your body. As you went from one week being diagnosed, one week having your colon removed, a bag and then JPouch you missed out (thankfully) on years of steroids, asacol, azathioprine, cyclosporine and other nasty drugs. For me, having a stoma bag is no different from putting my pants on in the morning – it is just another article of clothing and believe me when I say I suffered from not only UC but a massive drugs load than knocked me out for over a year. I believe you are in that place, what do you decide for your future? Persevering with the drugs or going back onto the bag, either for a while or for good is your choice although it is not my area and I strongly recommend you look into it or get your consultant to lay out the options.

    However, as for the Proctitis it actually sounds like you might also have pouchitis (but again do not take my word for it) and it can be dealt with by antibiotics.

    You are in my thoughts buddy, no one deserves to go through all this again after surgery that should make you better.

  • steph63308
    steph63308 JonWHut

    Posted

    I too have a colostomy due to colon cancer following years of ucI still have UC in the resection basically just above rectum, but my surgeon told me my loo visits would still be frequent, as the colon removes water thus making things solid, unfortunately without the colon you will still be liquid so even without pouchitis/proctitis/uc it will be hard to tell what is normal due to colectomy or what is disease, blood, mucus means inflammation but you won't ever have "normal" bowel habits. I am taking a medication break at the moment, due to start mycophenolate before getting the ok to start vedolizumab, but whilst waiting a decision I realised I felt better than I had in a while, not taking uc into account which was bad with or without meds, but bloating, extreme fatigue, nausea, headaches and general illness seemed to subside. Maybe one if those things but maybe no immune suppressants is the reason. Although 5 years is a long time to suffer, take into account hitting on right meds, surgery etc it may be a while before it settles, I'm 26 years down the uc line and 8 cancer free, it is a long term fight, sometimes you're winning others you're not, but don't suffer in silence, go back to your surgical team for qualified advice.
  • steph63308
    steph63308 JonWHut

    Posted

    That was colectomy not colostomy but my spell check changed it!
  • Maryjo
    Maryjo JonWHut

    Posted

    Oh dear...sounds as if u r having a flare up in rectal area as that is always possibility or u could b having pouchitis  I'm sure u r tired of it all. There r plenty diets out there which u can google. Also look up psyllium husk and psyllium seed. I found it to be useful. I however eventulally had to hav ileostomy after 26 years of uc about month ago and I must say my life is vastly improved....I would prefer not to have had uc obviously but I prefer to hav ileostomy than the constant symptoms of uc which r so debilitating. Wonder why surgeon passed u on...could he not have did tests or whatever to discover reason why this was happening ?? MJ
  • bob1234
    bob1234 JonWHut

    Posted

    I dont know but my heart goes out to you because you have been really put through the mill.

    Diet and meds for colitis and its nasty sister proctitis. Is individual. However remember what you ate when you had colitis and go from there.

    IBDs are so debilitating. I have indeterminate colitis and it rules my life.

    An answer maybe a permanent colostomy bag.

    I have heard that the bag isn't so bad.

    Best wishes bob.

  • JonWHut
    JonWHut

    Posted

    Thanks for the replies. I don't have a J-pouch and things have been, apart from the toilet trips, bearable up until recently.

    I have had courses of steriods recently which may have helped somewhat but know I don't want to be on them long term. I also don't think the mesazaline actually makes any diference to me.

    I do think that long term I need to have another op to get the stoma again, as I can't go on like this. I'm 40 and struggle to go out, makes spending time at the park etc with the kids impossible and I only really want to stay at home as this is a "safe zone". It also then casues arguments....

    Think I was hoping someone else may have tried something that may have helped a little. Maybe I was clucthing at straws a little hoping someone may have something that could help me. Just feel at time its falling on deaf ears with the doctors etc...

    I also think that having had more time to think about the stoma again changes things. I did suffer from depression last time round as it was thrust onto me, but then some days now I feel completly fed up.

    I had hoped to go private, but am not covered, and can't seem to get hold of my surgeon to discuss the options...I've been chasing an appointment since Feb!

    Oh well onwards and upwards...Thanks everyone

    • Maryjo
      Maryjo JonWHut

      Posted

      Hi.....if u have to have stoma again it may not b as bad as u would hav had more time to think about it and u r bit older even though u still young ! Can u not get speaking to consultants secretary re appointment...don't no where u live of course and if other country they may hav different process.  Keep pestering  whoever u need to pester to get some action ! MJ
    • JonWHut
      JonWHut Maryjo

      Posted

      Hi Maryjo,

      I’ll give you a shortened version of how I came to have an ileostomy…out of hours doctors on a Sat morning, with high temps etc. Kept in hospital, treated with antibiotics, steroids and enema’s told I had UC, came out of the blue…stabilised due to get home 9 days after I went in, temp spiked and went through the roof, blue light job to a larger hospital, 5hr op and woke with an ileostomy. No time to think about it or get used to it, hence my struggle with it to start with.

      You are most probably right, I 'm now thinking the best way forward is the stoma again. As I said to someone else, accepting it is the first step...I didn't have a chance or time the first time, but deep down know whats probably best.

      I have tried the secretary and left message by no response...its just a slow process to go through the doctors...

  • 28thJuneMummy
    28thJuneMummy JonWHut

    Posted

    Sorry to hear this John. Have read about aloe Vera drinks don't know if it will help... I've started pro biotics too but not been on them long enough to give a verdict yet. Hope you get sorted soon. Take care & sending healing thoughts your way.
  • brightside2016
    brightside2016 JonWHut

    Posted

    hi, john

    I hope you dont mind me asking but I was diagnosed 2 years ago with uc then had a flare up and the removed my whole colon & gave me a illostomy bag which I have had for 3 weeks..so still all alien to me. I am 40 next year with 2 young kids, its bloody hard isnt it, you are going thro so much aswell, I just wondered if you regret having the reversal? everyone says to me oh dont worry the bag wont be forever but I am starting to have doubts obviously I have loads of time to think. what are your views?

    • JonWHut
      JonWHut brightside2016

      Posted

      Hello,

      Not a problem at all to ask. I know where you are coming from.

      I’ll give you a shortened version of how I came to have an ileostomy…out of hours doctors on a Sat morning, with high temps etc. Kept in hospital, treated with antibiotics, steriods and enema’s told I had UC, came out of the blue…stablised due to get home 9 days after I went in, temp spiked and went through the roof, blue light job to a larger hospital, 5hr op and woke with an ileostomy. No time to think about it or get used to it, hence my struggle with it to start with.

      Hindsight as they say is great thing. I desperately wanted rid of the stoma when I had it. I gave it a shot and things seemed ok for a time, but I constantly had to plan and think where a toilet was anytime I went out.

      I found summer the hardest as you wore less clothing and obviously you want to hide it.

      Saying that, and this may sound strange but I wouldn't say I regretted having the reversal. I tried and ultimately for me it probably hasn't worked out. At least I didn't have the “what if?” But looking back I now wish I had stuck instead of twisting.

      I probably always knew deep down I would end up with an ileostomy again at some point in my life.

      Looking at how things have panned out, and ultimately knowing the next step for me is to have another op as there probably isn’t a magic cure, I'd say the benefits would be getting a life back again, being able to go out and visit places on my terms and not have to worry about where the nearest toilet is. I might not be able to go swimming or things like that, but having some control again will be a big plus. It'll need emptying, but that can be done more on my terms to some extent.

      I don't have to pump my body full of drugs constantly and I'll be able to do some exercise again (hopefully) cycling, running, and out walking, and spending some time with the family, which I can't do at the moment. I don't do holidays at the moment as I just want to be in the safe place of home.

      The biggest downside is another op with several weeks off work. The reality is that even with the reversal you'll still have numerous trips to the toilet and the stools will always be watery as it’s the colon that absorbs most of the water. I do get very sore down there at times due to the number of times I end up at the toilet and I won't miss that either.  

      My advice...it’s your choice, it’s what you feel comfortable with, don't rush it and see how you feel when you get used to it. Having the reversal isn't perfect and it may work for some people. I heard people say you won't have the bag forever also or, the bag will become second nature to you.

      In essence I’d say think about it and don’t rush it. Both have downsides, and it my case I’d say now I probably have more positives towards an ileostomy, but that might not be the case with you. Time is also a great healer! Accepting the ileostomy makes a difference – I couldn’t accept the first time due to the nature of what happened, but now accept it’s probably the best way forward for me.

    • Maryjo
      Maryjo JonWHut

      Posted

      Yes that would been horrendous shock to system esp when younger . I was offered surgery in my 30s but would not hav it..self Image and Prob fear of unknown etc. This time round I was told I had to hav it due to stricture in colon. I'm 61 and I must say it was still a great shock...but at same time my condition was worsening over the years. It took me one week getting over shock and I must read about every forum on Internet and all info I could find on it till my brain was oversaturated.Also looked at a lot of utube videos on it too. I must say all the info was very useful and did help prepare me. I think we r so lucky nowadays that we have the Internet facility and sharing of info and support from so many people on the forums . I had couple meetings with consultant surgeon re op and probably I knew it was inevitable and had mentally well accepted it b4 I had surgery. I had no problem from i had it. I just got into emptying and changing it as soon as I was personally able to manage it which was from about day 3 post op. I am trialling out different bags at mo...I use the drainable ones which I change every other day. I've narrowed it down to 2 bags ..don't no which one of two I will use regularly yet. I have no bother with emptying of them..poss 4 times during day and once early hours of am . The output is normally porridge like consistency unless I eat something or drink something which makes it more liquid.eg I drank few mouthfuls of my husbands Guinness other nite lol and it was more liquid..I'm normally glass wine drinker which appears ok. Im on low residue diet at present and then gradually introduce other stuff slowly after 6 week period.It only takes me couple minutes and changing them every other day takes me less than 5 minutes. Once recovery period is over I will b able to do anything I want to do ...even swimming not that I'm that fab a swimmer. It's amazing what people who hav had to hav stoma bags r able to do...it gives so many of them a new lease of life and they seem to take a whole new approach to it and take up new and challenging hobbies. It's great no more cramps bleeding and I now can eat all the stuff I had to avoid b4. U should def read through the different forums for it . I no occasionally u get some people who hav some problems or who hav difficulties accepting it but u get that with a lot of things in life. i hope it all works out for u ! MJ
    • Maryjo
      Maryjo brightside2016

      Posted

      Hi carlycolitis..I had surgery month ago...hav a read of my reply to John and if u hav any ?s I would b happy to answer them MJ 
    • brightside2016
      brightside2016 Maryjo

      Posted

      thanks MJ I am getting used to my bag I suppose, I just get down about it sometimes but I suppose we all do. I did read your blog thank you
    • Maryjo
      Maryjo brightside2016

      Posted

      I had read up on both methods re ileostomy but had chosen to go route of permanent ileostomy as I did not want problems with pouchitis etc and possibly further surgery down the way. One op was enough for me..do not like hospitals even though I was trained nurse and midwife lol. U r week to two weeks behind me with young children..I'm sure u r feeling low. Tiredness in itself with young family would make u feel low mood never mind the post surgery tiredness. I still feel tired but Prob well improved from week 3 . I hope u hav good support cos u def need it at this time plus as much rest as u can manage. When u feel a bit stronger and ur mind has processed it all later in year ...it may not feel as bad. I feel when u r tired and exhausted we as human beings tend to b less logical and our emotions play havoc on us. I hope as time passes, u become stronger both physically and mentally and just think no uc to wreak havoc on ur life ! 😊 MJ
    • Maryjo
      Maryjo

      Posted

      Sorry Carly just saw ur last message re ur stump...didn't realise that..that was Prob another reason I decided to go route of other as I had read people hav issues with that also and after suffering with my uc for 26 years I wanted finished with the symptoms  MJ 
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