Hi all. I am sorry if I'm posting in the incorrect place...struggling a bit to find my way around.
Just had a second opinion and the second opinion officially changed my diagnosis from UC to Crohns. I was in hospital in December to drain an abscess, tighten my seton stitch and had 5 days of iv antibiotics. I'm barely out of hospital 4th week now, still on cortsone and the next abscess have formed.
Doctors are really pushing me to do a colostomy. I don't feel that I'm emotionally ready for it. Doctor can't/won't give me any guarantees that with a colostomy the fistulas and abscesses will heal and go away.
I am scared that if I go ahead with the op and nothing improves that I will not cope with it.
2 questions -
1. How do one prep yourself to get ready for this big change?
2. From your experiences, does a colostomy help to allow for healing of the fistulas and abscesses?
Hi Madelein,
Everyone's experience will differ but here's the salient points of mine;
I had relapsed and was progressively getting worse without any action from my original gastro team until I eventually started getting abscesses. First of all it was down below, so I had to do the seton thing which I was very unhappy about. I asked to get rid of it and seemed to carry on ok (as far as one can in relapse mode).
Anyway, I think a year may have passed of being very ill, but managing to function. My aim is always just to be able to go to work - even if I drag myself there - so I just let the relapse slide further and further until I ended up with another abscess on the site of a previous anastomosis. After antibiotics and drains aplenty, I wasn't very happy about it but surgery to form a stoma but it was the only way I was going to walk out of hospital again. (By this point I had a new gastro team in London who looked a bit more proactive).
One very important point: The original surgeon I spoke to was more or less going to remove everything so the stoma would have beeen irreversible. The second said that he would retain everything he could to allow a reversal to take place. Second opinions are very valuable!
Post-surgery there is a lot of support. I wasn't allowed to leave hospital until I could use and change the bag myself (which is very easy). I have a nurse in my area who I can contact anytime by phone if I have any problems and she'll usually have some extra gadgets or products that help. The weakest link for me was my GP who just couldn't seem to deal with the prescription requests from a third party. (You essentially contact a company directly for your supplies and then they request the prescription... In Britain you also get a medical exemption certificate, which - from memory - entitles you to free prescriptions for 10 years at a time). My advice is to try and find a GP with an electronic prescription service.
Physically, it's all very easy (apart from the odd leak or skin irritation here and there, but these are generally pretty easy to solve). The difficulty for me was the psychology of it. The only positive I had from it was that I could go back to work but I was quite terrified of everyone knowing about it. This meant that I was constantly distracted by trying to hide any evidence of it (generally a bulge under my clothes or noise, etc.). Again, there are products to solve these issues (belts/ waistbands/ etc.) but I could never seem to get over the fear of it. I hate being trapped in little meeting rooms with people - especially around lunchtime - in case I make a strange noise. The funny thing is, after two years nothing ever really happened like that, but it still distracts me. I tried an approach of beginning to tell some of my friends but I didn't find their reactions, attitudes, or just their knowing to make anything easier in that respect.
To answer your original question, I don't think you can prepare for it. It may come off as incredibly cliched, but you do just have to take it one day at a time. It's good to find someone that you can explain the issues you face to. For me, it was the girl in my HR department - but really what I think it comes down to is that once you vocalise a problem to someone you feel duty bound to find a solution. For example, once I found that I was becoming more socially anxious, I explained the situation to HR and with only really a kind few words of support I became quite determined to force myself into social situations with the expectation that I would begin to relax more with time.
All I can say for the second question is 'yes - it worked for me'. I've had a bunch of tests recently in the run-up to getting a reversal and everything that was in extremely bad condition previously seems to be completely normal now. I have suffered for a while now with a number of extra-intestinal manifestations, which seem a lot more difficult to control but I have been described as being in 'deep remission from the intestinal perspective'. It should be noted though that as part of my surgery the offending abscess was completely removed. I'm not sure where I was in terms of abscesses/ fistuals further down - but at the time it was described as 'being in a very poor state'. Presumably these issues have more chance of healing once the back end is allowed to rest without the continued interruption and infection from fecal matter.
Hope this helps.
. Hope all goes well for you and things improve no end.
. Hope your doing ok 
. I think I will know which direction I'm gonna go within the next year. I'm seeing a new GI soon. Not happy at all with my current one. After two years he still would not consider surgery and just kind of brushed away everything I said. Now we're at 3 years. Still in the same boat. So we'll see where it goes. I think I am mentally/emotionally prepared for surgery at this point.
I know people who have been in the same or similar boat are the only ones who can give me a real opinion on this. No one else is speaking from experience.
. How long do you feel like it took you to adjust to the new lifestyle with the ostomy? Have you had flares since and how was it dealing with them?
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Feeling better.
