Crohns / ulcerative colitis sufferers

mattyg said:
No reaction it just wasn't doing anything. They add the allopurinol to shunt the aza into doing what it should do.
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yeah I know it sort of magnifies the effects of it - actually it was mercaptoprine I had in the end... similar to AZA

first had a normal does of AZA - side effects...
then they tried me on mercaptopurine , though apparently a 50% chance of the same side effects with that one if you had them with AZA... unfortunately I did

then lastly I went to the low dose mercaptopurine to lessen the side effects (had to faff around with a pill cutter and take 1/4 of a tablet) + the allopurinol to boost it, was on that for a while until they switched me to humira
 
Yeah thye cut my AZA does into 1/4 of what it was as the allo bumps up the amount the body absorbs....Or something like that.

I respond really well to the Pred. 3-4 days and I'm symptom free...Its just a can have a rebound flair when I taper, and the docs don't want me on it for long. This course is for 8 weeks but I'll string it out over 10 or so as they want me to drop from 5mg to nothing in the last week. I normally respond better 5mg>3mg>1mg over a couple of weeks
 
ah I've never had Pred, I've had entocourt a few times, it's supposed to be a bit milder/lower dose as it just targets the small intestines so fewer side effects - fortunately I don't have many issues with the large intestine
 
MOOGLEYS said:
Thanks I hope so too. I can’t have any more advanced meds for my colitis until this has cleared up.
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I've got one forming on my bum at the moment. It's not painful or anything, but it's got to the stage where I'm fairly sure it will have to be drained. I've had that done 3 times and, honestly, it's the only thing in my life that really scares me. Safe to say I'm bricking it.
 
dirtychinchilla said:
I've got one forming on my bum at the moment. It's not painful or anything, but it's got to the stage where I'm fairly sure it will have to be drained. I've had that done 3 times and, honestly, it's the only thing in my life that really scares me. Safe to say I'm bricking it.
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If they mention laying it open, run for the hills..... lol
 
dirtychinchilla said:
I've got one forming on my bum at the moment. It's not painful or anything, but it's got to the stage where I'm fairly sure it will have to be drained. I've had that done 3 times and, honestly, it's the only thing in my life that really scares me. Safe to say I'm bricking it.
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I've had a permanent seton for acfew years for a recurrent abcess and a new one since November. It can be horrible sometimes so I'm so grateful when i barely notice them. They are a lot to deal with mentally.
 
DB_SamX said:
I've had a permanent seton for acfew years for a recurrent abcess and a new one since November. It can be horrible sometimes so I'm so grateful when i barely notice them. They are a lot to deal with mentally.
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I'm sorry to hear that, sounds deeply uncomfortable and painful. For me, it's not the abscess that ****** me off, it's the recovery after the operation. So bloody awkward.
 
I had to stop the antibiotics as they made my guts go insane, Yesterday I was on the toilet pretty much all day. Hoping there is no infection or will need to look at other options. I don’t think I have ever had success with antibiotics tbh.....

Thankfully things have calmed down today and it’s not as painful as it was but still ruddy sore but bearable with lots of hot baths...
 
MOOGLEYS said:
I had to stop the antibiotics as they made my guts go insane, Yesterday I was on the toilet pretty much all day. Hoping there is no infection or will need to look at other options. I don’t think I have ever had success with antibiotics tbh.....

Thankfully things have calmed down today and it’s not as painful as it was but still ruddy sore but bearable with lots of hot baths...
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What might help a lot, if you don't already do so, is to ditch toilet paper. As unpleasant as it may seem, the best thing to do could be to jump in the shower after a **** and avoid the friction of wiping...
 
dirtychinchilla said:
What might help a lot, if you don't already do so, is to ditch toilet paper. As unpleasant as it may seem, the best thing to do could be to jump in the shower after a **** and avoid the friction of wiping...
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I do if I can make it upstairs my notice at the moment is pretty much non existent so have to go downstairs. I do use moist wipes which help a lot. Also using Sudocrem has helped too although the surgeons would rather I did not use and kept it dry but the stinging/Burning is to much.

It’s certainly better now than it was last week. Being in a flare up and having fistula surgery would not be recommended by me..... lol
 
I had an infection over the summer, it wasn't nice, three days in hospital, had to come off the Crohn's meds and go on antibiotics which then just caused problems with the Crohn's
 
Apologies if this has been posted before but I've recently been reading up about something called Bile Acid Malabsorption, which can cause chronic diarrhoea and it's common in Chrons sufferers apparently, same as IBS sufferers. According to the stats there's up to 1/3 of people diagnosed with IBS have BAM (or BAD). The way it works is if your body can't properly absorb the bile salt when it moves into your colon your body then sends water to the colon and causes diarrhoea. I think if you notice after eating fatty food a bout of diarrhoea that's a good sign that you may have it.

I've only just heard about it, going to go to my GP to see if I can get a SeHCAT scan for it, thought I'd let people know in the off chance it helps someone out.
 
Just back from the doc and they say I have a fissure and small pile which could be why I’m having so much pain and bleeding still..... Blehhhh I’m pretty sure the work experience kid must have done my op.
 
Question for all:

1. Have you noticed an increase in travel insurance recently (assuming you are declaring your conditions)?

2. All providers are asking me the question "have you had any unplanned hospital admissions in the last two years?". I have no idea how to reply as I can't find out from their (tried a few) policy documents what is classed as "unplanned". Anyone come across this before?
In November I phoned my IBD nurse as I was feeling unwell so they asked me to come in the next day for admission and examination, so I don't know if that is classed as unplanned. Whether it's planned/unplanned can virtually half my quotes!
 
DB_SamX said:
Question for all:

1. Have you noticed an increase in travel insurance recently (assuming you are declaring your conditions)?

2. All providers are asking me the question "have you had any unplanned hospital admissions in the last two years?". I have no idea how to reply as I can't find out from their (tried a few) policy documents what is classed as "unplanned". Anyone come across this before?
In November I phoned my IBD nurse as I was feeling unwell so they asked me to come in the next day for admission and examination, so I don't know if that is classed as unplanned. Whether it's planned/unplanned can virtually half my quotes!
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My travel insurance is obscenely high, around the £250 to £300 mark for 10 to 14 days. The cover for existing conditions is less than ideal.

I have quite a few systemic auto immune diseases on top of the UC though.

An unplanned admission is one without an appointment, usually A&E. What you describe above just seems like a classic overbooking to me, you had an appointment so it's not unplanned.
 
Aedus said:
Apologies if this has been posted before but I've recently been reading up about something called Bile Acid Malabsorption, which can cause chronic diarrhoea and it's common in Chrons sufferers apparently, same as IBS sufferers. According to the stats there's up to 1/3 of people diagnosed with IBS have BAM (or BAD). The way it works is if your body can't properly absorb the bile salt when it moves into your colon your body then sends water to the colon and causes diarrhoea. I think if you notice after eating fatty food a bout of diarrhoea that's a good sign that you may have it.

I've only just heard about it, going to go to my GP to see if I can get a SeHCAT scan for it, thought I'd let people know in the off chance it helps someone out.
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Appreciate this thanks, always attributed these symptoms to my pancreatitis but I will investigate.
 
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