Colitis

[Mum2Ela]

My brother (17 years old) has just been diagnosed with ulcerated colitis and I was just wondering whether anyone has any success stories / useful advice. He is really quite poorly atm

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Sorry to hear this M2E. My FIL has also recently been diagnosed with this. I can't give you any advice really but at least this will bump up the thread. There is a patient's association website here .

I have it, but don't have much time to post now (sneaked on quickly while supposed to be doing something else). Will be happy to answer any questions though.

My friend's dd was diagnosed at the age of 11 with severe UC. It's been a long hard path (she's now 24) but she's living life to the full now. My friend would say to keep up to date with the latest thinking as it has changed quite dramatically over the years. Also, don't be afraid to ask for more info/referrals/whatever you think you need.

M2E, what treatment has he been given so far?

i have a reflexology client who also takes aloe vera juice, along with various other medications. i actually am of the opinion that hers is caused by an traumatic event that still has deep emotional links.

but she would certainly recommend the aloe vera juice. i believe some talk of honey being added.

My dh has Crohn's disease (which I believe is a form of ulcerative colitis). He's been on a few different types of medications now and nothing seems to really be making a lot of difference - it's been going on for a long time and the medication also costs a LOT of money. I've tried to encourage him to look into alternative treatments/naturopathy but don't really know much about it at this stage, so I am also really interested to know what suggestions come up here.

that should be 'see what suggestions come up here'

Gingernut - he had a colonoscopy (sp?) yesterday and they have given him steriods to calm it down which he will take for about 2 weeks. They'll get him in again then and have another look as it was very severe and they couldn't put the camera very far up iyswim.

He is very weak atm. He's been like this for about 5 weeks now and has lost sooo much weight and as he was a beanpole to sart with, he looks soooo ill.

He was meant to start an apprenticeship course at college at the beginning of Sept and he hasn't yet been able to go, so he'll prob miss out this year which is such a shame.

My mum has colitis too and she thinks hers is triggered by stress so mostly manages to keep it under control, and I think she drinks aloe vera juice too.

Does anyone know anything about whether colitis may be linked to food intolerances?

i have had the same treatment as your brother. The steroids did eventually calm that particular flare up , but I was quite ill as well. I get recurring bouts of it from time to time, most recently a couple of weeks ago.

I've had it on and off for about 4 years. the first bout , I lost a stone in 10 days, then it was failry mild for a while, then it came back again, and it took about 6m for it to calm down again,after more steroids and increasing my mesalazine. At the moment I have only mild symptoms of it, which makes it bearable, but it can make me feel dreadful tbh, and I have lost more weight.

I was told by the consultant that there was no real link to avoiding certain foods, but when you are having a flare up, fruit and veg are likely to aggravate it more. There is also a familial link, and in my case this is the case, as both my sister and my brother have had similar symptoms in the past.

Meds I take are Mesalazine (asacol), everyday, steroids when needed for bad flare ups, and sometimes, as the mesalazine can make you feel nauseous, esp if like me i have recently upped my dosage, I take an anti sickness drug.

It can make you feel really bloody awful, colitis, but when it has stabilised, hopefully he will go into remission for a long time, and will start to feel better. Once the inflammation in the bowel has been calmed, he should find himself returning to normal.

Hth.

my client takes codeine when she is say going on a long journey... its known for its constipation effects.

there does seem to be an hereditary link, although thats not the point. it may be worth looking at diet, even if consultant says it will make no difference. wheat is another obvious irritant.

have you checked out that website that was posted earlier in the thread? i did have a look round it awhile ago when i was researching the condition. also, if you put ulcerative colitis into google, you will get many real life stories, that are often more helpful than doctors opinions.

look into all areas of the individuals life. for instance, was your son getting edgy about starting a new college/ course? perhaps it was affecting him more than he was letting on? from what i gather, the doctors do not know what triggers it or why one person would get it.

certainly look to reducing stress factors in the first instance.

M2E, my FIL has had this for about a year although the first really serious bout was about 3 weeks ago. He ended up in hospital for a week with severe dehydration. He was treated with steroids and was feeling very much better within the week, so hopefully your brother should respond fairly quickly. He is now reducing his dosage gradually. He has been on mesalazine since the first bout last year, and although he found the side effects unpleasant at first they did settle down after a while.

AFAIK there is a hereditary element. Like lou, FIL has been told there's no real link with eating particular foods but he's been advised to keep a note if certain things do seem to aggravate it.

As I said, I can't really offer you much in the way of advice. We didn't realise till FIL was so very ill recently how serious this was, and we live a fair distance away. FIL hasn't really come to terms with it yet - we offered to pay for him to join the patient's association but MIL said no because he hasn't yet accepted that this is a chronic illness. I think we'll probably just join ourselves because we hope it may prove a useful source of information. At the moment I just feel I know so little I can't do much to help.

So, sending my sympathies and I hope your brother feels better soon and doesn't have frequent relapses. Sorry I didn't post more yesterday but I was feeling shattered (as ever)!