Anyone know anything about ulcerative cholitis?

A friend of mine has it. Hers is mostly controlled by diet, but she does have sudden attacks that often need steroids. I know she has had a few operations, but I don't know how major. She's 30.

Look out for Monkey Fingers, im not sure if thats what she has or something else but its that area of the body.

Hi Clairebecky,

I had ulcerative colitis when I was fiftheen resulting in the whole of my large intestine being removed and me having an ileostomy- this is possibly what your friend has rather than a colostomy. The difference being an ileostomy is a piece of small bowel (The ileum) being brought to the surface of the stomach, a colostomy is the large bowel (The colon) being brought out.

A colostomy is easier to manage as it works a certain amount of times of each day,so you can have some sort of control over how to plan your routine. An ileostomy is constantly working resulting in the bag needing emptying multiple times throughout the day.

Although it is all very daunting, your friend should hopefully be feeing much better, as the surgeons would have removed all of the bowel that was diseased (if it is a colostomy he has, they may have left some of the large colon that was no severly diseased, and may treat this medically)

Colitis more frequently flares up in peoples 20's and onward.

It is a very similar disease to Crohns, however, Crohns can't be cured by taking away the large bowel as it can affect the small bowel too and any other part of the digestive tract.

Life with a bag isn't ideal, but it is managable and there is no reason why he can't get back to his normal lifestyle.

Life with a bag is preferable to life with Ulcerative colitis when it is a flares up (for example a good day for me with colitis involved at least 24 visits to the bathroom, with extreme pain and lots of blood and mucos) you are constantly fatigued and can sometimes have accidents as the pain and urge to go comes on so quickly not leaving you time to make it to the toilet.

He will need some time to adapt to life with a bag, but there are some great support groups out there including the NACC, and also the IA (they have a great forum which offers some really good advice.)

I hope he is feeling much better soon and that his life is much better for him now he has the bag, if you need to know anything more or if you think he may like to speak to someone else who has had the disease and now lives with a bag, please pm me.

Also, it is possible that the bag may only be temporary- if there is a significant amount of large bowel left they may try to reconnect things when it has settled down with drug treatment, or he could have an internal pouch made- this is very large operation and not one to rush into having, but I had my pouch for 10 years and it worked really well for me.

Take care

(sorry for any spelling mistakes have had my tablets as I was just off to bed, but saw this and had to reply, so I am a little more dopey than usual)

MF XXX

I really hope he makes a good recovery. He's really into his football, so it'd be a real shame if he can;t get fot again. My Mum said he's been told he can have a sports bag or something that might make it possible eventually but at the moment it sounds like he's in a bad way. I just hope he is able to attend the birth because he'll be devastated of he misses it!

No reason he can't play football, and unless he is still hospitalised there is no reason he can't be at the birth. I know it sounds daunting, but life can get near enough back to normal. He and the people around him need to have a positive attitude and he musn't let the bag control his life.

xx

Thanks Monkey Fingers - I think we cross-posted!

I think it is a colostomy cos my Mum told me that apparently there is some undiseased large intestine left and there is a small chance they could try and reconnect it at some point, but that if they did there were likely to be lots of complications so it may not be feasible. They aren;t yet 100% sure whether it's colitis or crohns disease.

He has apparently had a great deal of pain, and has lost lots of weight. He had complications after surgery too because a stent or something got blocked and nobody noticed, otherwise he's be recovering better by now.

Just seems so unfair, when he has a baby on the way and a new wife etc!

You must have been thorugh a very rough time too - it sounds a horrible disease.?

Makes me feel v lucky to be healthy. The thing is my Mum told me, but apparently he doesn't want it widely known, so I'm not sure whether I should send a card or anything or just pretend I know nothing.

He is still in hospital - that's why there's some doubt over attending the birth, it depends whether he still needs nursing care or not.

He probably doesn't want everyone to know he has a bag, when I had my first one, no one except for family and one friend knew, I was deeply embarrassed by it. This time round everyone knows.

As I have been so open this time, I notice people discreetly (and sometimes no so) glancing at my stomach trying to see if they can spot the bag. I hate this and it does make me feel very insecure and paranoid that people can see it.

You could send a card saying you heard he has been unwell, just not mention the surgery.

He needs to take one day at a time and concentrate on building himself up ( I was 5 stone when I eventually had the surgery)

Hopefully it will come back as colitis but if not, Crohns can be managed very well medically, and sometimes people only have one major flare up.

Crohns and Colitis are very similar and can be hard to diagnose- I have borderline Crohns/Colitis, with lots of debate over the biospsies. Many of my problems now are symptoms of Chrohns, but recent tests came back clear of the disease, so it is all a mystery why I have the problems I do.

The pains should start to ease and he can start to get back to normal x

Take care.

I expect you're right about the embarrassment. I might send a generic get well card.

Let's hope it's cholitis and the op has sorted it out!

I think the doctors must be quite confident that either the remaining bowel isn't diseased or that it is, and they can treat it medically- otherwise they would have removed the whole bowel and quite possibly the rectum too (if the rectum is removed the bag would be a permanent fixture)

I hope he is feeling much better soon, if the surgery was done as an emergancy, it may take him sometime to accept the ostomy as it will be a huge shock.

I will keep him in my thoughts x

Lots of love to you and your family.