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Ulcerative Colitis



Jim Van Winkle

Well-known member
Jul 14, 2010
3,125
Hawaii
I've just caught up with this thread and on reading some of the posts, the above in particular, I need to be thankful that nothing like this has happened to me. I got diagnosed almost 29 years ago not long after my 17th birthday. Bizarrely I first started having symptoms on the day of the trip to Anfield for the cup game in '83! I had to go in to the Sick Kids just up from David Rose Sports at Seven Dials to have a massive carbuncle removed from my rectum. The consultant thought I was suffering from cancer (although I only found out about that later!) and it wasnt until I went in to the Royal Sussex to have an impacted wisdom tooth which was showing up on dental x-rays but wasnt giving me any gyp that the oral surgeon sussed that I was suffering from Crohn's Disease. I was then started on Prednisolone and Salazopyrine as well as loperamide.

I've had a few flare-ups over the years, the worst one resulting in me being kept in hospital over a weekend but really I've been very lucky by the sounds of things. I now take Azathioprine and Pentasa as well as Loperamide to cope with the inevitable shits. I've been on Azathioprine for about 5 years and it really is a wonder drug. I suffer from eczema as well as CD and this has really cleared up my eczema. Unfortunately I'm going to have to give it up soon as you can't be on it long term as there are some indicators towards cancer etc.

I live a very normal life. I drink (to excess at times) and eat curries and all manner of food. I know if I go on a bender I will feel like shit(ting) the next day and that I will be spending a lot of time on the bog but all in all, I can't complain.



The disease itself really is a strange one, you can read as much literature on the illness as you like but what i've noticed is every case is unique. It really is trial and error in terms of what medication(s) work for each individual and which foods effect the bowel.
For me personally i find the booze gives me a really bad gut ache the next day so try and limit myself to a couple of sessions a month.
 




airman

Patriae Fidus
Jan 25, 2012
96
Salisbury Plain
Infliximab proved to be a wonder-drug for Mrs Airman for a good couple of years, in 17 years of marriage I think that was the wellest I've known her for such an extended period. Very expensive though (for the NHS).
 


beefypigeon

Well-known member
Aug 14, 2008
972
Infliximab proved to be a wonder-drug for Mrs Airman for a good couple of years, in 17 years of marriage I think that was the wellest I've known her for such an extended period. Very expensive though (for the NHS).

I was infliximab too and it was brilliant, but due to the fact it had a certain type of mouse protein in it, it had to be given in hospital which was a bit annoying and given over a couple of hours. It became less effective for me a few years after starting it and had to have an op to get the infected area removed. I'm now on humira (abdunilumab or something? I like to call it Adam el abd!) its a drug i give myself fortnightly injecting myself using a pen diabetic style. Been on it for 6 weeks now and feeling the best I have for years :)
 




leigull

New member
Sep 26, 2010
3,810
Is this similar at all to IBS? Sounds like some of the symptoms are the same, but obviously more extreme if people have to have a bag etc
 




airman

Patriae Fidus
Jan 25, 2012
96
Salisbury Plain
Is this similar at all to IBS? Sounds like some of the symptoms are the same, but obviously more extreme if people have to have a bag etc

I understand that UC and Crohns are often misdiagnosed as IBS on initial presentation as indeed the symptoms are very similar.
 


leigull

New member
Sep 26, 2010
3,810
I understand that UC and Crohns are often misdiagnosed as IBS on initial presentation as indeed the symptoms are very similar.

Ta. I was diagnosed as having IBS after suffering painful stomach cramps for a while. Have had two bouts of it which lasted around 6 months each but am currently ok. Just never heard of UC before and it wasn't mentioned by the doctor when doing blood tests etc
 


beefypigeon

Well-known member
Aug 14, 2008
972
Ta. I was diagnosed as having IBS after suffering painful stomach cramps for a while. Have had two bouts of it which lasted around 6 months each but am currently ok. Just never heard of UC before and it wasn't mentioned by the doctor when doing blood tests etc

Both chrones and UC are forms of IBS, so whilst they do have their differences they are quite similar. Also it is one of those things that flares up and down seemingly at will, so one day you'll be fine and the next you may not.

It took drs 3 years to diagnose me as every time I went for a blood test I was conveniently feeling okay and the inflammatory markers in my blood were low!!
 




Feb 2, 2007
1,694
Japan
Both chrones and UC are forms of IBS, so whilst they do have their differences they are quite similar. Also it is one of those things that flares up and down seemingly at will, so one day you'll be fine and the next you may not.

It took drs 3 years to diagnose me as every time I went for a blood test I was conveniently feeling okay and the inflammatory markers in my blood were low!!

I have been led to believe that IBS is generally down to a poor diet, while that is not the case with UC and Crohns. Mind you there is so much conflicting information out there it is hard to know what to believe
 


leigull

New member
Sep 26, 2010
3,810
I have been led to believe that IBS is generally down to a poor diet, while that is not the case with UC and Crohns. Mind you there is so much conflicting information out there it is hard to know what to believe

I haven't changed my diet much at all between bouts of IBS and now. The main changes I have made which I think have helped is drinking a lot more water each day, and not many fizzy drinks or alcohol.
 


sebtucknott

Active member
Aug 22, 2011
317
Shoreham-by-Sea
Both chrones and UC are forms of IBS, so whilst they do have their differences they are quite similar. Also it is one of those things that flares up and down seemingly at will, so one day you'll be fine and the next you may not.

It took drs 3 years to diagnose me as every time I went for a blood test I was conveniently feeling okay and the inflammatory markers in my blood were low!!

I have been led to believe that IBS is generally down to a poor diet, while that is not the case with UC and Crohns. Mind you there is so much conflicting information out there it is hard to know what to believe

IBS = Irritable bowel syndrom
Crohn's & Colitis are IBDs - Inflammatory Bowel Diseases

The both have similar symptoms but with IBD the bowel is actually inflamed and damaged which can cause bad complications such as perforation hence people needing surgery.

It sound's like everyone has different ways of dealing with it and has different symptoms. This has always been my frustration as it feels like the doctors kind of let you get on with it an learn for your self.

What medication are people on?

I've been on Pentasa (Mesalazine) since I was diagnosed. Now on 2g/day seems to keep thing fairly stable but doesn't have a big impact when things are bad.

I've been on Prednisolone on varying doses for 4 years. It's a wonder drug pretty much works instantly if I have a flair up. Seem to be lucky and not have any noticeable side effects either. Need to come off them though I know they're not good long term.

I've just started 6MP (Mercaptopurine) in my 3rd week. Difficult to say yet whether its working as I've been feeling run down with a bad cold since I started it and I've upped my Pred so my stomach is doing alright.


How do people with stomach issues find the football? The Amex (or any ground I've been) is the worst place I've been in terms of worry about needing the toilet. I can't believe there are only 6 cubicles in WSU!!!

I usually pop some anti diarrhea tablets before the game and hope for the best!
 




IBS = Irritable bowel syndrom
Crohn's & Colitis are IBDs - Inflammatory Bowel Diseases

The both have similar symptoms but with IBD the bowel is actually inflamed and damaged which can cause bad complications such as perforation hence people needing surgery.

It sound's like everyone has different ways of dealing with it and has different symptoms. This has always been my frustration as it feels like the doctors kind of let you get on with it an learn for your self.

What medication are people on?

I've been on Pentasa (Mesalazine) since I was diagnosed. Now on 2g/day seems to keep thing fairly stable but doesn't have a big impact when things are bad.

I've been on Prednisolone on varying doses for 4 years. It's a wonder drug pretty much works instantly if I have a flair up. Seem to be lucky and not have any noticeable side effects either. Need to come off them though I know they're not good long term.

I've just started 6MP (Mercaptopurine) in my 3rd week. Difficult to say yet whether its working as I've been feeling run down with a bad cold since I started it and I've upped my Pred so my stomach is doing alright.


How do people with stomach issues find the football? The Amex (or any ground I've been) is the worst place I've been in terms of worry about needing the toilet. I can't believe there are only 6 cubicles in WSU!!!

I usually pop some anti diarrhea tablets before the game and hope for the best!

Altough suffering from U/C i have never ever had to use the sit down toilets at any ground,unlike my roomate in mexico 86! he was going 30 times a day!:rolleyes:
 


sebtucknott

Active member
Aug 22, 2011
317
Shoreham-by-Sea
Altough suffering from U/C i have never ever had to use the sit down toilets at any ground,unlike my roomate in mexico 86! he was going 30 times a day!:rolleyes:

Only had to once as a precautionary measure before a game!

I find it's very psychological and if I even start thinking I need to go that makes it worse. Luckily we've had mainly interesting games this season so it's kept me occupied!
 


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