The Official MT Colitis & Crohns Sufferer's Thread

ORIGINAL: richyd
The medication james has mentioned help im currently on quite a strong dose. Dont know bout james but also makes me very hyper sought of like taking efedrine

Are you referring to the prednisolone here or the mesalazine?

JAMES??? Your flair up that went on for months how bad was that was it just loose stools and regular??

Some days were bad, others were not so bad. It was frequency, blood, cramps, loose stools. Some days okish, then periods of bad

When you have a flair ul know mate with out these meds i dont think id be able to train. I remember when i had my last flair up i could sleep on 3 efedrine ( i didnt know what was wrong with me at the time )

I could train, but it would mean a poo break mid workout and I was uncomfortable. Plus my motivation to eat was low. I had a good appetite, but it's off putting to eat when you know there's 3-4 trips to the loo following it!

ORIGINAL: richyd

One thing i couldnt get my head round james/les

Is even though you use the toilet very frequently your body still absorbs the nutrients from the food you eat. Is this correct???

Just seems strange to me as your using toilet so much how can your body have time to absorb it???

Obviously i know fro experience that in a height of a flare up a lot of it wil be blood and not the food consumed.

CHEERS

Food transit is the same time, you just go or feel the need to go because of the inflammation. Plus the high blood content and water meals you produce more, though most of the visits are actually only small amounts of poo - but you have to release them. So you need more fluid.

If you guys are feeling tired this is a combination of the extra work your gut is doing, but moreso the blood loss - get checked out for anaemia. or take some ferrous sulphate iron supps - you may feel tons better

ORIGINAL: richyd

What do you mean the pred was preventing things???

Im still worried bout mine ive been let out of hosp but im still passing blood. No where near as regular but still bit worrying.

As regard to the doc i dont see the point hes a clown!!! but more the fool me as im still with him. I think he feels bit guilty as anything i ask for he does with out even questioning it.

Dont think i bother with a food allergy test m8 apparently my specialist is won of best about in wales. I ask him does my diet effect my colitis?? He said i dont know, i then asked does training hard and hard work effect it?? He said i dont know.

He basically said he know how to treat it to a certain extent but not what causes it, why you get.

Forget the food intolerance tests - they will be of no help. He is right though, he doesn't know if diet or training will affect it. If I were asked the same I would answer the same TBH!

Yes we don;t really know what causes it, but treatment can be successful.

Rich - which part of your colon is affected?

(BTW I got your email - I'm away and will reply when back in the office over the weekend)

I had the colonoscopy when i was in hop but not with the flexi cam as it was to inflamed. It was with the rigid one and he said they can only go half way with this one. But the doc said as he got to half way round it was getting worse. So he went further than he should and said it was getting worse and worse the further he went on.

He said he cant be fully sure without doing a full one but is 99% positive that my whole colon is now effected and gets worse the further round


The prednisolone i was on about do you find it makes you feel strange?? Makes me feel really lively and dont sleep much on it. Also i come up with crazy ideas of things im going to do

Im getting bit worried bout mine if im honest. Last time i had a flair up and i was let out of hop the blood stopped. This time im still passing blood after more than a week out of hop. It also seems to be getting slightly worse by the day and im on 4omg pred which i believe is quiet strong and should be working

ORIGINAL: richyd

The prednisolone i was on about do you find it makes you feel strange?? Makes me feel really lively and dont sleep much on it. Also i come up with crazy ideas of things im going to do

Yes mate, there are strange side effects of a psychological nature.

Possible side effects include fluid retention of the face (moon face, Cushing's syndrome), acne, constipation and mood swings. Ocular Side-effects if taken;

Systemically: Posterior subcapsular cataracts & papilledema

When I thought I had candida I put my mood swings to that but now I now about the sides of pred I'm all the wiser.

TBH dude you have it far worse than me, kinda makes me feel like mine isn't worth grumbling about. I've heard in worst-case scenarios that it has to be operated on and I think it may be for the best.

James: you say the tiredness is due to and bleeding. As I don't bleed anymore and haven't done for a while, do you know why I feel worse than I have done? Can I ask how the gut is 'working harder' when you have colitis?

When I try to do heavy deads I can actually feel the weakness in my muscles and they just refuse to work in terms of lifting capacity, things like that.

I also find my worst time for going is in the morning, even though I haven't eaten! It's at this time that I also have a really, REALLY nasty gut ache (even though the mesalazine is taken the night before and lasts 24 hrs, and gut gets better as day goes on - normally).

I had my first real flair up in dec 05 that needed a week in hospital (I was ill for 4 weeks prior to this but nothiong major then it exploded in early dec). I was on prednisolone for that time and for a few weeks after then I came off and I was free of anything for a year. I had a major attack in January this year that required 2 1/2 weeks hospital stay, off work for 2 1/2 months and I was on prednisolone again for that time. I was also given 3 types of Mezalazanine but I never took to it, I was always worse on it so I'm never taking that stuff again. I was also put on Azothiaprine which supresses your immune system and stops your body from attaking the inflammation, or at least reduces what It does because we know that the body can't cure it but it still tries! It takes about 3-6 months for it to work properly and it is long term medication but so far so good, incident free for 6 months, could be coincidence but could also be due to the Azothiaprine!

One thing is a dead cert no one is operating on me that would end my life as i know it in so many way.

Gothic i was put on Azothiaprine in hospital but had one SERIOUS!!!! headache off it did you have this prob???

I have had colits for abour 8 years now, I had a bad flare up which lasted for over a year, they were so bad I was on the toilet about 7 to 10 times a day passing blood and brown water. I felt weak, and had bad flu like symptons when it was at its worst. It would calm down with the prednisolone, but come back once I was down to 2 tabs a day.

My Consultant decided to put me on infleximab which I get given through an infusion every 2 months, I feel better than I ever have and can even eat some of the foods that used to cause problems. In addition to the infleximab I take 3 Tabs of Azathioprine daily and 3 tabs of asacol 3 times a day.

The prednisolone used to give me spopts on my back and dry skin, it is also bad for the bones if you're on it for to long.

My Colitis effects most of the large intestine, but after 8 months on infleximab the last camera up the bum showed a near perfect picture, where as before it was so inflamed they couldnt get the camera around one of the bends.

The problem with Colitis is that different foods effect different people, Peanuts was one of the trigger foods for me, and sweetcorn would pass through me undigested.

Got to say mines really getting me down now and im a really positive guy its just getting worse and worse.

Windlespoons do you finds its the foods that passes through you that makes you worse??? I know im not digesting a lot of veg.

How do you know what kind of foods effect you???

I thought food wasn't an influence and cause was unknown. Perhaps I should start playing around with foods. Which I'm really not looking forward to. I like knowing what I've got to eat and varying things a little with fruit and veg but that's about it.

Same as me groove i really cant see the point. How are you suppose to isolate one food and blame that?? Far to complicated imo, but if its a case of food you know you dont digest i know what they are for obvious reasons

Sweetcorn passes right through me when I have a flareup, but it doesn't actually start it, I know peanuts cause it because everytime I ate some I would get really bad overnight (I could eat nuts with no problem before i got colitis). Lettuce also used to cause some issues if I ate it. Someone else I know is unable to drink milk because it causes flareups.

It did clear up for about 4 years, but something I did or ate brought it back with a vengance, I have been told that colitis will never completely go, and will only go into remission. I know stress used to cause a flareup (which didnt help me because I would get stressed over how I feel and only made it worse), and I think excersize used to be a factor although I cant prove this now as I am on infleximab which is allowing me to do a lot of things I couldn't.

Mine started because of the amount of fresh orange I used to drink, at first I thought it was just a regular case of the squirts, but 3 weeks later I still had it and decided to go to my GP. I then went private through bupa or something like that and paid to see a proper consultant. He told me he thought it was either Chrons or Colitis and arranged to see me through the NHS. I now see him at queen elizabeth hospital every 4 months, and have my infusion every 2 months.

I'm thinking I may have a problem with chicken - anyone know if this is possible? This is bad news as it means I stuck with only tuna as no other protein source is in my price range (bar dairy which I can't do).

OK, so a few nights a o I had a few drinks with some people down the road. I seldom drink and thought I'd test the water given my condition. Since then (3 days later) I've felt nauseous all the time. This isn't good news. Apparently colitis can cause nausea anyway. Anyone aware of anyway to relieve this?

Windlepoons what is this treatment your having m8??

Could you explain a little more please??

Did they ever mention to you about operating??

CHEERS

I am on Asacol and Azathioprine, I have been on these for many years although I personally don't think they are helping me, I was put on Prednisalone which was an excellent short term medication, but it had to many unwanted side effects and isn't something you can take long term.

I am now on a medication called infleximab, I have to go to the hospital every 2 months and they give it to me via an infusion (drip), at first it takes 2 hours to do, and then you spend another 2 hours waiting to make sure there are no side effects. After a couple of treatments they do it within an hour and you only wait an hour after. They said to me that if this didn't work they would consider operating, but they said an operation is something they don't want to do unless it is the very last option.

Infleximab hasn't long been licensed for Colitis, it is an anti inflammatory drug which is also used for arthritis and Chrons, I started feeling the effects within a week, but didn't start getting full benefit until after the second session. My last session is in November, after this they are taking me off it to see if it returns, if it does they say they will put me back on.

During my last visit I was told they are trialing a new drug in the US which is given through an injection, apparently they are trialing this on people who had no positive results with Infleximab, something that we probally wont see over here for a couple of years though.

Next time you visit your consultant it might be worth mentioning that you want to be put on it, he will probably want to have a look with the camera first, and if they do put you on it they will have 3 more looks during a 12 month period. Not very pleasant but the invasion is something I can put up with if it means living a normal life.

groovemeister: I only really felt nauseous during a bad flareup, it is possible chicken may be a trigger food for your individual case, but if feeling nauseous is the only effect you are seeing it could be something else. I am by no means an expert, I can only talk from personal experiance and what my Consultant has told me over the years.

JAMES???

I know your not a doctor mate but what are your thoughts on low fiber diet when its a bad flair up??? Last time i did the low fiber diet and my colitis cleared up. This time i havent fold it just eat healthy foods.

And this time its been nearly 2 weeks out of hop and im still passing blood an its getting worse by the day. So much so ive rang today to see my specialist tomorrow my colon hurts when i walk and my bodys aching all over.

Do you think that diet is good on flair up?? Im also thinking that the pred might not be working as i wasnt off it long before i got this flair up. I suppose its probably like any steroid or drug your body adapts to it?? CHEERS

Im well annoyed now was hoping to get back to work this weekend and start training properly.

ORIGINAL: Windlepoons

I am now on a medication called infleximab, I have to go to the hospital every 2 months and they give it to me via an infusion (drip), at first it takes 2 hours to do, and then you spend another 2 hours waiting to make sure there are no side effects.

Wrong spelling mate - it's Infliximab

I had a course of 4 infusions a few years back for my Ankylosing Spondylitis - knocked it straight into remission where it stayed.

How many infusions are you down for, or is it a case of every 2 months ad infinitum?? Just asking as I know it's bloody expensive stuff, and I didn't realise it was licensed for UC (it wasn't licensed for AS, I was part of a study).

Nice to know it's got multiple applications, just keep an eye out for anyone with TB!!!

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ORIGINAL: Tony Barnes

ORIGINAL: Windlepoons

I am now on a medication called infleximab, I have to go to the hospital every 2 months and they give it to me via an infusion (drip), at first it takes 2 hours to do, and then you spend another 2 hours waiting to make sure there are no side effects.

Wrong spelling mate - it's Infliximab

I had a course of 4 infusions a few years back for my Ankylosing Spondylitis - knocked it straight into remission where it stayed.

How many infusions are you down for, or is it a case of every 2 months ad infinitum?? Just asking as I know it's bloody expensive stuff, and I didn't realise it was licensed for UC (it wasn't licensed for AS, I was part of a study).

Nice to know it's got multiple applications, just keep an eye out for anyone with TB!!!

Opps for spelling ;)

Ill have been on it for a year, every month for the first 3 months, then every 2 months after that, my last infusion is in November. If after this my colitis flares up again they will put me back on it, but from the last camera he said everything looked healthy so fingers crossed.. I was told it has only been a short time since it was licensed for Colitis.

ORIGINAL: richyd
The prednisolone i was on about do you find it makes you feel strange?? Makes me feel really lively and dont sleep much on it. Also i come up with crazy ideas of things im going to do

No I felt good on it - I honestly loved it (apart from the acne and water retention)!

James: you say the tiredness is due to and bleeding. As I don't bleed anymore and haven't done for a while, do you know why I feel worse than I have done? Can I ask how the gut is 'working harder' when you have colitis?

Hmm - hard one. There still could be some bleeding - however get an anaemia test and this will exlcude this as a cause. Also remember the bowel has to work harder. This can lead to tiredness. This is because the inflammation, basically causes a blockage and motility has to work harder to puch the poo through