Crohns / ulcerative colitis sufferers

Soldato
Joined
24 Dec 2004
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18,874
Location
Telford
My surgery was done yesterday I’m now officially gutless... lol... Feel a bit rough but at leat the horrid cramps have stopped. Everyone was fantastic especially the anethitist who was very calming....

Last night was my first night not having to get up for the toilet in months.... :)

Just need to get the recovery out the way now...
 
Soldato
Joined
24 Dec 2004
Posts
18,874
Location
Telford
Sorry for the lack of updates had a rough couple of days including my first experience of passing out. Things are better now and going ok. It’s 5 days since my op and I’m about to start eating small amounts of low residue food, after being on sips of water since the op due to my stomach taking a while to wake up and causing a bit of a low grade fever. I was sick twice as the little bugger was enjoying its time off. Not a nice experience when it’s just green bile. Much better now it’s passing through the guts and out the stoma.

It’s definitely not been an easy experience so far but even now very early on things are much better than before. No cramps is heaven alone at the moment. And not forgetting not needing the toilet 30 times a day is a bonus.

The surgeon said my bowl was in a bad way and although not ruptured yet he did not think it would have been long. So lucky it came out when it did really or things could have got a bit messy.

Just need to settle my stoma output down and get used to everything but doing ok so far. Everyone in the hospital are fantastic so no complaints....

Cheers
 
Associate
Joined
12 Apr 2019
Posts
2
I've only just come across this forum. First of all, my deepest sympathy to anyone suffering from Crohns or UC. I hope that Moogleys is recovering well.

I won't bore everyone with my full story but UC hit me out the blue 4 years ago, I've always been fussy with my food, have no family history of UC, have never smoked (although apparently some say smokers are less likely to get it) and only really drank alcohol in my uni days. I've been really suffering with it for a long time. I don't get any stomach pain or bloating but my colon has acute pan colitis. I've tried pretty much everything apart from the SCD diet. I've narrowly avoided surgery but even when I was far better than I am now my consultant pretty much tried to pressurise me into removing my entire colon. I totally appreciate that some sufferers prefer this but the thought of this type of surgery petrifies me (unless it was a matter of life and death, I cannot imagine consenting to having it done).

I couldn't get on with Azathioprine or Mercaptopurine at all, both totally knocked me out within hours of taking one tablet. Methotrexate hasn't had any side effects but I'm not convinced it made any difference. I'm fine on prednisolone (which is bizarre really as many sufferers cannot get on with it at all) but it's nowhere near as effective as it was at first. Infliximab didn't make much difference. I am supposed to be trying Vedolizimab soon but I don't hold out high hopes. I was interested to read about Beclometasone and Budesonide on this forum - I haven't heard of these before, maybe I should try them.

I tried a gluten-free diet last year and at first, it seemed to help but after a while it didn't seem to make any difference so perhaps unwisely, I reverted back to my usual diet with the exception of coffee, alcohol and steak which I have completely cut out for the last 2 years.

I have read a fair bit about faecal capsules and faecal implants but there isn't much information about this in the UK and it sounds as though very little is known about potential side effects and the chances of success.

I've spent most of the weekend researching the SCD Diet and to be honest, I'm kicking myself that I haven't tried it before. Of course it may not work but there is a lot of logic in it from what I've read so far re: starving the colon of the carbs that cause the immune system to attack and the diet doesn't sound impossible to stick to. I'd be very interested to hear fellow sufferers thoughts on colon removal (as I say, for me it's an absolute life of death last resort - I've had very minor non UC related surgery before and that brought on complications so a massive op like colon removal scares me to death!) and also if anyone has tried the SCD Diet. I'm definitely going to start the diet ASAP.
 
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Soldato
Joined
24 Dec 2004
Posts
18,874
Location
Telford
I’m doing good thanks. Tbh having my colon removed has been fantastic so far especially compared to what I had before. I really did not realise how ill I was and how much it affected my life and my family’s. I have had a bit of a complication since surgery as my wound opened up a bit so is now healing as an open wound but it’s not too bad and being monitored by the nurses.
The stoma side of things I have found really easy to adjust too the bag fitting is easy and tbh I don’t hardly notice I’m wearing it most of the time. Once my wounds have healed I think it will be even easier.

I’m pretty much eating anything I want now whereas before I had constant cramps and trips to the toilet if I ate anything even slightly funky. Being able to eat pasta and pizza again is great before tomato sauces would destroy me. I even had a McDonalds yesterday which was enjoyed without pain and worry.

Even the simple things like in the morning before once I was up that was it my bowls would open constantly for hours. Now I get up, empty my bag and go back to bed it’s heaven and I’m still enjoying being able to doze back off for the first time in years. I also managed to attend my kids Easter play too again not something I have done in years due to the panic of needing the toilet. I’m now also walking more, slowly building up a slow plod but it feels good not needing to try and find a toilet or having cramps every time and being able to enjoy the outside world in slow time.

My OP went fine it’s definitely a big one and I have had a bit of a rough ride especially the first week after surgery which was a bit of a mess. But once everything calmed down it has been getting progressively better each day. I’m now 3 weeks and 2 days post op and pretty much pain free I don’t take any pain meds other than the odd paracetamol but that’s mainly for my back more than stoma surgery. I’m still weaning off the Prednisolone which tbh has caused me far more issues than the surgery and the daily injections of blood thinners is a pain but I suppose better than having clots. As mentioned my wound opened up a bit and has required daily dressings but tbh it’s not that bad it will just take a bit longer to heal and I get to go and chat with the nurses each day. There is also a nice tea shop close by and I’m working my way through the menu.

So far the surgery has both saved and changed my life completely. Tbh I wish I had it years ago as it’s only now I’m really realising how bad life was trying to cope with the U/C and all the drugs diets etc. I really cannot wait until I’m all healed and really looking forward to catching up on the last ten years of life that I have missed or experienced in a less than great state.

Hope all is doing ok and thanks everyone for your support.....
 
Associate
Joined
12 Apr 2019
Posts
2
That's fantastic news Moogleys, I'm really glad to hear you are doing so well. I must admit I haven't really researched the surgery too much as I've always been so scared of it. It's very encouraging to hear you are doing so well. It's so good to hear you can eat what you want too - when I had a meeting with a stoma nurse a couple of years ago I was told I'd still have to be careful what I eat.

One strange thing I didn't mention in my first post is that when I'm out and about, I've only ever needed the loo relatively urgently about 4 times in the last 4 years. However, if I'm at home there are times when I've gone to the loo about 15-20 times a day! It is extremely strange as I've never come across anyone else who's experienced this. Although my colon is currently in a very bad state, I drove for 4 hours a few weeks ago and didn't need the loo and I can usually stay out and about for about 6 hours before needing the loo. It's almost as though when I'm outdoors my brain can switch off the need to go to the loo! I've mentioned this to a few doctors and consultants and IBD nurses but none have given a reply.

That's superb to hear you are pretty much pain free already. I had a small hernia op a few years ago and developed a massive haematoma - I couldn't walk very well with it for months but thankfully it eventually settled down. It's great to hear that the nurses are so supportive. I must admit I've dealt with 3 consultants and I've found all of them really negative generally and dismissive of most of things I suggest such as diets or how I think having a positive attitude helps.

It must feel awesome to get your life back after all this time - as you say, I guess it's only afterwards you realise how much you've gone though. Although I still can't quite believe I have UC, I guess I have pretty much got used to the symptoms so it's only if they went away I'd realise how bad they were.
 
Caporegime
Joined
29 Jan 2008
Posts
58,912
Since it is summer I was just looking for travel insurance, I'd previously booked with Tesco (the provider I'd used before being diagnosed) and they were fine last year as I'd not had any (unplanned) hospital admissions in the previous year, though the quote was a bit expensive regardless IIRC (didn't bother shopping around). This year a couple of places wouldn't give me a quote though perhaps as I've had a recent unplanned admission for a bowel obstruction.

I've ended up going with "free spirit" this year, got a Europe package for just under £100 as no long distance trips planned (It is the US that can really **** things here).

Anyway just thought I'd mention them as others might be looking for similar given the time of year, might be worth throwing in any other providers you've had success with in the thread... don't want to just promote one company (or indeed make them subject to adverse selection from a bunch of really, really sick internet users... I'd quite like them to stay in business so I can use them again next year!).
 
Soldato
Joined
17 Jun 2007
Posts
9,295
I get it with my Barclays account.. I've told them and theyve added it to my policy for no extra cost.....Apart form the £15 per month or whatever it is to have the account... Which with the rewards and phone insurance I think I'm still up..

Its always worth checking with the bank too
 
Caporegime
Joined
29 Jan 2008
Posts
58,912
Good point, that could vary depending on recent hospital admissions, procedures etc.. but definitely seems like it is worth checking first.
 
Soldato
Joined
17 Jun 2007
Posts
9,295
Good point, that could vary depending on recent hospital admissions, procedures etc.. but definitely seems like it is worth checking first.


Its life insurance that dont want to touch me...

I should be ok now as I've been steroid free for over 12 months but before that was a big no
 
Soldato
Joined
17 Jun 2007
Posts
9,295
An aunt of mine has been diagnosed with Crohns. Any beneficial tips guys?

This disease is so individual that specific tips are difficult.

However tell her its not the end of the world even though sometimes it may feel like it. It may take a while before they find a combo of drugs that work for her but they will generally find a combo.
Tell er to keep a food diary. Chances are food wont be a trigger but if she does flair then food can make that worse.. She could do with finding her trigger foods.

She may not have any but it can't really hurt

Oh

And pass on our thoughts
 
Associate
Joined
10 Jul 2012
Posts
1,463
Location
So where?
Thanks guys.
She is having a rough time of it, in so much as she is a chef and a solid grafter, being slowed down is getting her down. She is still smiling and getting on with it, but you know how you want good people to not suffer.
 
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