admitted to hospital with colitis.....any advice?

[cardy]

My bil was diagnosied with colitis about 5 years ago. Since then he's had a number of flare-ups which have been managed quite well by steriods. However he's had a bad bout over the past 2 weeks and today was admitted to hospital as the doctor said he was 'very poorly'. Understandably my sister is very worried and has no idea what 'very pooly' actually means. He'll undergo a number of tests and a colonoscopy, to check the severity I assume.

Has anybody experienced this ot know of anybody who's colitis has become so servere?

I should imagine it means he is not responding to the oral treatment and might need IV steroids to settle the flare down.

Is it ulcerative colitis or Crohn's? Poor him

also he could be very dehydrated from the diarrhoea so need a saline drip

it's ulcerative colitis. He been on high dosage of steriods for 2 weeks, they don't seem to be making much difference. my sister is worried that it'll end up with surgery.

Yes I guess that is a risk

I would have thought they would try a high dose of IV antibiotics first

Have you looked at the NACC website?

No, will do.

Thanks

Your poor poor BIL. I was in hospital before christmas and diagnosed with the same. It's really painful and draining. I was on a drip for a few days while I drained away. For me it's still early days and I don't know what sort of future the disease holds for me.

I found this website quite helpful. I hope the drugs start working soon.

My friend's dd had this at the age of 12. She was admitted to hospital for tests and to 'rest' the bowel by being fed IV nutrients as well as a/b's and steroids. In her case, it did end in surgery but she later had a pouch operation and now, 15yrs later, is travelling the world and lives a normal life!

Hi - my DH suffered with ulcerative colitis for 20+ years. His flare ups were always bad. In fact when I gave birth to DS1, DH was on a bed in the delivery room because he was that poorly but determined to be there. He had come out of hospital about two days prior to me going into labour.

He has been colitis free now for 5 years. He had an ileostomy and had a pouch formed and then after 6 months he was plumbed back in - so to speak.

He does a lot for the IA charity and did a visitors course.

If you need any help, I am sure he would be only too pleased.

Thanks for all you reponses, they ae really helpful. Bil is always reluctant to talk about so I wanted to find out more in order to be supportive to him but also my sister.

What is the pouch?

cardy - DH just walked in. He said after his tea he will give you the full lowdown and point you in the right direction and give you the correct website you/bil should be looking on.

Some people are very reluctant to talk and DH sometimes talks to the relatives rather than the patients and answers their queries.

Will be back soon.

The internal pouch, aka the ileo-anal pouch, ileal pouch anal anastomosis, and j-pouch amongst other things is the 'Gold Standard' surgery for ulcerative colitis. It is a bowel continuity and continence restoring surgery and avoids the need for a permanent ileostomy. The surgery can be performed in 1, 2 or 3 stages depending on the health of the patient and the surgeons preferences. It effectively cures the disease by removing the colon and rectum, the last part of the ileum is formed into a reservoir to replace the rectum and this is normally stapled to the anus. The loss of the colon and rectum means the patient does not have the capacity of a 'normal' person and will have to go the toilet more often, on average 5-6 times a day. This might sound a lot, but trust me due to the lack of urgency, it isn't.

The best place to go to find out more is the IA website, the forums that can be reached here will provide access to lots of people with internal pouches. Be warned this is a support site so you should expect to see lots of people with problems, do not deduce that this is how it is for everybody - it isn't. IA will arrange for a trained visitor to speak with anybody who is considering this or ileostomy surgery (they will also speak to a close family member or partner too if the patient does not want to), simply contact IA National Office and they will arrange it.

P.S. previous post from DH. Hope this helps.

Thank you for that link Bellavita. I've got a follow-up appointment on Monday. I had a horrible time with the steroids although they are incredible drugs. At the moment I'm just on Asacol for however long it takes... The main problem I find with gut problems is that they are SO undignified! I am also having an operation to get rid of piles. Sometimes it's hard to know what the problem is.

No problem.

Thank you so much Bellavita and DH. This information will be very helpful to my sis (she'll talk to her dp about it I'm sure). BIL had a colonoscopy yesterday but they could see very much due to the larage amount of inflamation. As CD predicited he is on IV steriods and saline drip.

Sis doesn't live close by to me or other family so it feeling a bit isolated I think.

Glad you found the info helpful.

In some ways we are lucky that DH did not have surgery at the very beginning when he was diagnosed (around 25 years ago now) as he would have been stuck with a permanent ileostomy. Although he really did suffer with every flare up. His weight used to drop dramatically and then of course he had no energy so much so that he could not even stand up in the shower.

In the end for DH, the steriods no longer worked.

The operations have come on so much, DH had his done in 2 steps.

Having said that though, we did get used to him having the ileostomy and yes he did have accidents and quite a few times in the middle of the night I would be changing the sheets on the bed, but in the end we just used to laugh about it.

Like DH said, if your sister wants to talk or to meet someone, just get her to contact the IA and they will arrange it.

Good luck and keep posting and let us know how they get on.

I've been told my grandma had colitis. Dh's son was diagnosed with Crohns when he was about 14. It's pretty horrible draining away. I lost a stone very quickly. I put it back on nearly as fast as I lost it. It can't be good for one!

Bellavita, your info is very interesting and it's great to see that the pouch is now the gold standard treatment. My friend's 12yo dd's pouch op was pretty pioneering as I think there'd only been nine previous ops in the UK at that point.

What sort of 'shelf life' does a pouch op have, do you know? Back in the early 90's they said it would last about 10yrs but df's dd has had hers 15yrs and is very well.

Suedonim - the first ones were done in 1976 so are over thirty years old, but to answer your question - nobody knows.

There was a study done in the British Medical Journal last year that looked at over 200 pouches that were over 20 years old, so shelf life is pretty high.

Are you sure it wasn't 9th in the hospital?

No, not 9th at that hospital, Bellavita. Maybe it was 9th in Scotland, although the IA had to refer my friend to England for more info. Whatever, it's been a success for her dd and that's the main thing. Good to know there are 20yo pouches still going strong, as well.

It's weird, looking back, on how difficult it was to get info and support then, without the internet. My friend was always awaiting packages in the post and so on. Now, it's almost at one's fingertips and you can usually find someone who's BTDT for moral support.

Cardy - has your sis been in touch with anyone?

this has happened to me twice - I have Crohn's.

If he can avoid the operation, then he shoukd - its pretty major, but undoubtedly beneficual

There are still a few options left - he can try the elemental diet. Its three months drinking gunk, but it works.

But there are loads of great new treatments about - he should just be relying on a steriod drip.

I know he has crohn's but for anyone else reading this there is a bloodwashing treatment called Adacolumn that dampens down the faulty immune response

then there is the TNF treatments - Infiximab and Humera -they are incredible. Tell him to ask for these

he should also ask for blood transfusions - there is a doctor in Birmingham who is research how this can be used to maintain stability

crohn's is a bloody horrible disease, hope he gets well

sorry, typo - he shouldn't just be relying on a steroid drip

also - is he on mesalazine, or immune suppresants: 6-mercaptopurine or a related drug, azathioprine

unless there is a good reason he can't take any of the stuff I said steroids are a very poor front line defense

I know as I've not been able to tolerate some of the other treatments (very rare thing to happen so don't worry) and I'm much worse when I have to rely on steroids alone

to all of those who suffer from this difficult condition.

Thanks everyone. I shall pass the info on weejie, it sounds a bit like a foreign language to me but I am sure he'll find it useful.

Update - he is still in hospital and although there was some improvement he seems to have take a step backwards. They have taken him off the IV steriods in favour of oral steriods and some other drug (sorry I don't know what they are - this is all second-hand from my sis). It seems in terms of treating him there is a large amount of trial and error in terms of what works/what doesn't.

Fingers crossed.

Quick update - BIL is coming home today. They are happy with the blood tests and say that the amount of protein in his blood has been reducing (don't know what this means myself) but it is clearly an improvement. Hopefullt he will be closely monitored over the next few weeks and everything will settle down.

Thanks to those of you with great advice.