Inflammatory Bowel Disease

Nightmare Walking

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27 May 2014
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3,238
Does anyone else suffer with it? I have Crohn's in my rectum and multiple patches throughout my large intestine. Unfortunately I am going through my 2nd major flare in 8 months. At the minute I am severely constipated and not eating much due to the pain. Can't have prednisolone as I have had too much over the last 18 months, so I am having to grind it out.

Should have had my medication changed early last year but then Covid struck and I have unable to see the consultant.

Anyone else on here suffer with it?
 

bobmcfc

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6 Nov 2007
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41,549
I’ve suffered with ulcerative colitis for 15 years now. I’m lucky I have a very good consultant at tameside who was very swift in finding medication that worked for me. Steroids never worked so he put me on Azathioprine which worked for 6 years. He changed me to infliximab in 2016 and I’ve been ok ever since. I have that every 8 weeks and touch wood I hope I stay ok on it. Mine was moderate to severe so I’m really lucky to have stayed in remission so long

what are you on ?
 

bobmcfc

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41,549
Do you have an ibd nurse ? I’d call if I were you as you certainly do not need to grind it out !

if you are in a flare you’re at greater risk of developing infection. This is a life threatening illness so if I were you I’d get on that phone and demand to be seen. If you’re suffering and bleeding then they need to get your medication sorted

You deserve a quality of life.
 

Nightmare Walking

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27 May 2014
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3,238
Do you have an ibd nurse ? I’d call if I were you as you certainly do not need to grind it out !

if you are in a flare you’re at greater risk of developing infection. This is a life threatening illness so if I were you I’d get on that phone and demand to be seen. If you’re suffering and bleeding then they need to get your medication sorted

You deserve a quality of life.
Yes I am under the MRI. To be fair, the nurse told me to go in hospital last week, but I refused. Don't fancy being in there with Covid flying about and I have an exam next week. I did not think this flare was going to be too bad, but I have nose dived over the last week. I had been in the week before for bloods and x-rays. My inflammation marker was elevated, but not enough to admit me. The x-ray shown that I was totally bunged up. Now nothing is coming out at all apart from blood. It seems all the inflammation is in the rectum at the minute and it is tricky to heal.
At the minute I am on Aza, the pred enema in the morning and the mesalazine enema at night. Am also on 3 sachets of movicol per day for the constipation.

Have you any idea what causes yours to flare up and how does diet affect you?
 

bobmcfc

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6 Nov 2007
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41,549
Yes I am under the MRI. To be fair, the nurse told me to go in hospital last week, but I refused. Don't fancy being in there with Covid flying about and I have an exam next week. I did not think this flare was going to be too bad, but I have nose dived over the last week. I had been in the week before for bloods and x-rays. My inflammation marker was elevated, but not enough to admit me. The x-ray shown that I was totally bunged up. Now nothing is coming out at all apart from blood. It seems all the inflammation is in the rectum at the minute and it is tricky to heal.
At the minute I am on Aza, the pred enema in the morning and the mesalazine enema at night. Am also on 3 sachets of movicol per day for the constipation.

Have you any idea what causes yours to flare up and how does diet affect you?
No issues with Diet. I don’t seem to have a trigger, when my meds stop working I just get very sick and stay that way. Eating anything while in a flare caused me to be rushing to the loo and staying there for hours on end. Just before I started infliximab I had 2 weeks in the Dominican Republic. It should have been amazing but I had to sit next the the bathroom in all the restaurants, by the pool etc. I started the drug about 2 weeks after I returned home and it was an instant improvement to the point you wouldn’t think anything was wrong at all. No tiredness, no accidents, no sitting on the loo for hours. I’m suffering abit these last few days but I have my treatment on Thursday coming so all should get back to normal after I have it. It’s called inflectra and it’s an infusion drip I have every 8 weeks. Takes about 2 hours the first few doses because they have to take it slow incase you react. Once you’ve had a few it takes less time and they get it down to about 30 minutes. They do humira too which is a needle you do yourself, they deliver it to your house and it’s more or less the same drug (TFN blocker)

I have oral tablets mesavant xl, IMURAN which is the branded azaphioprine and lansoprazole because of acid reflux issues. I don’t do steroids or the foams as they just didn’t work. My consultant is DR Gregory Whatley and he’s just been a lifesaver for me.
 

Man_City_Loyal

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All Over
I feel for you, i was diagnosed with IBS over 10 years ago and thankful its just that.

it does seem to calm down in recent years, avoiding certain food triggers
 

kaz7

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Joined
4 Feb 2010
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Trolls and bullies love me
Does anyone else suffer with it? I have Crohn's in my rectum and multiple patches throughout my large intestine. Unfortunately I am going through my 2nd major flare in 8 months. At the minute I am severely constipated and not eating much due to the pain. Can't have prednisolone as I have had too much over the last 18 months, so I am having to grind it out.

Should have had my medication changed early last year but then Covid struck and I have unable to see the consultant.

Anyone else on here suffer with it?
You can ask your gp to re refer you to the consultant , they are doing telephone calls if you cant go in , i went in for tests on my lungs and see mine the first time them he called me to discuss treatments , they are still there
 

MCFC1993

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5 Dec 2008
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19,419
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.
 

Nightmare Walking

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Joined
27 May 2014
Messages
3,238
No issues with Diet. I don’t seem to have a trigger, when my meds stop working I just get very sick and stay that way. Eating anything while in a flare caused me to be rushing to the loo and staying there for hours on end. Just before I started infliximab I had 2 weeks in the Dominican Republic. It should have been amazing but I had to sit next the the bathroom in all the restaurants, by the pool etc. I started the drug about 2 weeks after I returned home and it was an instant improvement to the point you wouldn’t think anything was wrong at all. No tiredness, no accidents, no sitting on the loo for hours. I’m suffering abit these last few days but I have my treatment on Thursday coming so all should get back to normal after I have it. It’s called inflectra and it’s an infusion drip I have every 8 weeks. Takes about 2 hours the first few doses because they have to take it slow incase you react. Once you’ve had a few it takes less time and they get it down to about 30 minutes. They do humira too which is a needle you do yourself, they deliver it to your house and it’s more or less the same drug (TFN blocker)

I have oral tablets mesavant xl, IMURAN which is the branded azaphioprine and lansoprazole because of acid reflux issues. I don’t do steroids or the foams as they just didn’t work. My consultant is DR Gregory Whatley and he’s just been a lifesaver for me.

I just bleed incessantly Bob, then as the day goes on, I start to feel rotten. My mid riff feels really sore and my back side is like hell on earth. The last 2 flares have caused constipation, which I had never had before. Now I can't get anything out, there is just blood that has pooled up from the inflammation right at the bottom of my back side.

Usually the only thing that gets it under control is steroids, but they will not let me have pred at the minute. To be fair, this flare probably does not justify them at the minute as the inflammation marker is not actually too bad. My main concern is that they are unsure what is causing the constipation. They think the inflammation is damaging the muscles. I am stuck between a rock and a hard place at the minute.

No idea what triggers mine, although stress does not help.
 

Nightmare Walking

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Joined
27 May 2014
Messages
3,238
You can ask your gp to re refer you to the consultant , they are doing telephone calls if you cant go in , i went in for tests on my lungs and see mine the first time them he called me to discuss treatments , they are still there

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.
 

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