Inflammatory Bowel Disease

Nightmare Walking

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27 May 2014
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3,234
I've had IBS for 10 years now, haven't had a bad flare up for a few years now but still get uncomfortable moments and uncomfortable goings tot he toilet every now and then. Thankfully I know which foods trigger it now.

OP given your situation is worse, I wouldn't just grin and bear it. Make sure somebody is trying to do something about it for you.

They are mate. Unfortunately I have had a couple of nasty flare ups over a short period of time. I was popping steroids like smarties at one point, plus on I/V steroids. You can't keep having them as they mess you up. They done my bloods a few weeks ago and the inflammation marker did not justify putting me back on steroids, it is definitely a last resort. So at the minute I do have to grin and bare it. Its not nice, but if I am going to be ill, now is the time to be ill.
 

kaz7

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4 Feb 2010
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Trolls and bullies love me
My doctor is a waste of space. 4 times I went to see him over a 10 year period, complaining about losing bloid from rear end. He just stuck his finger up there, told me it was probably piles. I was a nervous wreck through losing all the nutrients out of my body, plus being unable to absorb anything as everyrhing was running right through me.The doctor said I had anxiety. It took me collapsing in work and being packed off to hospital before anything was done. It was actually then the nurse at my doctors surgery who sorted out the colonoscopy and I managed to get diagnosed.

As Bob will tell you, we have our own dedicated IBD nurses and we deal directly with them. My GP has nothing to do with my Crohns anymore.

I will ask for an appointment with my consultant. I want to try and do everything to stop myself going up the treatment ladder. The next step is the biologicals that Bob is on. They are pretty horrendous things themselves. But my life can't carry on like this, so something needs to be done.
I am sorry you are still suffering , i remember your posts from before
 

Nightmare Walking

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27 May 2014
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I am sorry you are still suffering , i remember your posts from before
I was a lot worse last time.

Thought I would make the thread just for tips for dealing with it and a bit of support. Am a bit surprised there is only 2 of us on here with it as it seems a lot more prevalent in society now.
 

mcfc1996

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31 May 2007
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I was diagnosed with Crohns about 25 years ago. Throughout my 30's I felt terrible. I've had pretty much all the medication and treatment mentioned. Came off infliximab just over 12 months ago in advance of what should have been an operation to removed a stricture and colon. It's been cancelled twice with all that's going on. I was great on infliximab and felt better at 49 than I did at 29 and 39.
 

Nightmare Walking

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27 May 2014
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I was diagnosed with Crohns about 25 years ago. Throughout my 30's I felt terrible. I've had pretty much all the medication and treatment mentioned. Came off infliximab just over 12 months ago in advance of what should have been an operation to removed a stricture and colon. It's been cancelled twice with all that's going on. I was great on infliximab and felt better at 49 than I did at 29 and 39.
How come they have taken you off the biologicals mate? You had a reaction to it?
 

mcfc1996

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How come they have taken you off the biologicals mate? You had a reaction to it?
All down to the operation I was due to have. They wanted my immune system to be as strong as possible so I had to come off the infliximab. If it was up to me I'd still be on it.
 

Nightmare Walking

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All down to the operation I was due to have. They wanted my immune system to be as strong as possible so I had to come off the infliximab. If it was up to me I'd still be on it.
How have you been for the last 12 months?
Are you having a permanent bag?
Can I ask if you ever had any issues with constipation? I am having issues now where just a bit of inflammation right at my rear end is causing everything to stop working. It really is a nightmare. It get whistling in my ears due to pressure building up.
 

mcfc1996

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Overall I've not been too bad. I had a bit of a rough time one morning and ended up in A&E but everything was fine eventually.
The surgeon told me I wouldn't require a bag after the operation. However that was for the original date which should have been last April (it was cancelled again in Nov). At the minute it's elective surgery so I'm hopeful that still remains the case. I've had a conversation today with my IBD nurse following a few recent tests. All my bloods, etc are fine and a recent MRI scan showed that the stricture hasn't worsened for quite a while now.
I can't recall ever having any problems with constipation. Apart from the Crohns I'm pretty healthy and have no other issues. I do feel diet does help and have cut out a number of things like red meat and dairy.
Having read your posts you seem in a lot worse position than I have been in for quite a while. Your consultant or IBD nurses can't leave you like you're explaining.
 

Nightmare Walking

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27 May 2014
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3,234
Overall I've not been too bad. I had a bit of a rough time one morning and ended up in A&E but everything was fine eventually.
The surgeon told me I wouldn't require a bag after the operation. However that was for the original date which should have been last April (it was cancelled again in Nov). At the minute it's elective surgery so I'm hopeful that still remains the case. I've had a conversation today with my IBD nurse following a few recent tests. All my bloods, etc are fine and a recent MRI scan showed that the stricture hasn't worsened for quite a while now.
I can't recall ever having any problems with constipation. Apart from the Crohns I'm pretty healthy and have no other issues. I do feel diet does help and have cut out a number of things like red meat and dairy.
Having read your posts you seem in a lot worse position than I have been in for quite a while. Your consultant or IBD nurses can't leave you like you're explaining.
To be fair to my nurse, he tried to get me to go in hospital last week. I said no as I don't want to be anywhere near a hospital at the minute. I am not sure what they can do. I was in 2/3 weeks ago for an x-ray and bloods. My inflammation was raised but not ridiculously. They could see I was all bunged up though. I emailed them today, but have not received a reply.

I am going to see a dietician and sort my eating out. To be fair I don't eat much crap. Problem is that I do 12 hour shifts and sometimes it is easier to grab a take away on way home rather than eating properly. Other than that I am pretty healthy and get enough exercise. I think stress plays a big part with me and I have had a couple of stressful episodes over the last couple of years.
 

dadnlad

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13 Aug 2005
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Clifton Village
quick question ive got bad guts and have been same for years.I drink gallons of tea, ive this week gone on decaf tea and guts are better not perfect but improvement and tea tastes same just dearer
 

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