Any Colitis sufferers?

[alexa1]

Hi. I have recently been diagnosed with Colitis, although at this stage I am not sure what type, I am waiting to see a Gastroenologist.
My symptoms are quite debilitating. I have Diarrhea with mucus and blood in stools for about 1 week, then I will be constipated for about 4 days, it so awful and makes it difficult to go anywhere.

My brother suffered with Chrohns disease (which is similar) when he was born and only lived 2 months. My sister also suffers bowel problems (similar to mine) but she Just puts up with it and hasn't actually had a diagnoses.

Has anyone got any info on this condition. I also feel extremely tired all the time and have aching Joints. I have also lost my appetite and lost some weight.

Hi alexa

I have Crohn's (have had it for 15 years, so sorry about your brother, that is extremely rare).

A really good place to go for advice is the NACC

You may well end up on steriods as it is an autoimmune disease your body attacks itself causing inflammation. The steriods dampen it down. The side effects from these can be quite upsetting (weight gain, hair loss, face puffing up etc) but tbh are worth it to feel well again. They will probably also give you some mesalazine or similar which can help a lot. If it doesn't you may end up on immunosurpressants (I have been on them for years) which are vg at keeping you in remission.

The aching joints are very common, you do get secondary arthritis and other inflammations sometimes like iritis. This should go when you start the drugs.

The tiredness may be due to the fact that you are not absorbing your vitamins and minerals as you should be. You can ask to be given a drink that gives you everything you need to live (Elemental E028) which will give your colon a rest and also is fully absorbed in the stomach so that helps a lot with the tiredness.

Feel free to ask me any qs

I hope you get seen soon. How did they diagnose you?

Hi I havent got much advice but my mum was diagnosed a couple of months ago and I know how much she has been suffering so I really feel for you
She has been given tablets which are helping but it can take a long time to sort out but once it is the tablets should keep it under control.
My mum struggles to eat cos of it but the doctor has recommended buid up drinks (on the NHS) to help give her the vits and nutrients she needs.
Hope they can sort you out soon x

countess - do you have to follow a special diet? Do any particular foods or drinks set it off?
I hope I haven't got Chrohns, my GP examined me with a camera thingy and just said colon was inflammed and referred me on. The thing with me is, although there is bowel problems in the family, I really am a born worrier and worry about everything. I probably worry about stuff most people wouldn't. I also suffer with panic attacks. I know it's a separate condition, but I read on the net that colitis problems do happen to people who tend to worry a lot (not sure why) it also said it can make a person depressed. I phoned the hospital earlier to ask how soon I can see a gastro and she said about 3 months if I'm lucky. Do you know if I can go private?

Yes of course you can go private, just ask the gp for a private referral. Where do you live I can try and find out the best person in your area. Still go on nhs waiting list and then transfer once the appt comes up. I would also say to the gp that with your family history you should get an emergency appt on the nhs as you can become terribly ill and dehydrated if you are not careful

I don't know about the worrying I think that is IBS they are talking about. That is often seen (unfairly I am sure) as related to stress. I am not a worrier and I have it!

I really wouldn't worry too much, I know it is hard. It does take a while to settle down and get the drugs right, but I and many other people I know with it lead a normal life

Very fibrous food and things like nuts do certainly exacerbate it when I am having an attack. I would try and stick with low fibre stuff and get something like complan or ask your doctor for Elemental E028 (orange is the least revolting) then at least you can give your colon a rest and get some nourishmnet.

Alexa1-my mum finds drinking milky drinks (flavoured milk) helps but can only have the odd tea or coffee cos it makes it worse.
I dont know if it would work for you but cos my mum is in her 50s she got a 14 day referral to rule out cancer(her doc didnt think she did but its a fast track way and he wanted to put her mind at rest and get a diagnosis).
Talk to your GP cos if it is making you ill in other ways they might be able to speed things up

Thanks for you advice Countess and Sarah.
I will let you know what happens.

yes pls do

if you want to email me i am
countessdrac at gmail dot com

Alexa - how long have you had it and how old are your kids? I ask because had really severe UC for about a year after both my pregnancies. Anyway - A few courses of steroids sorted me out and i'm not having any more kids. Take care of yourself and DO NOT WORRY. Reflexology, Acupunture and Yoga can all help - the stress if not the symptoms. Good luck.

Sibdoms - My children are aged 4 and 1. To be honest, I have suffered piles since my DD's pg 4 years ago and worse after the birth. Not sure if there is any link between piles and colitis.

Are you off the steroids now?? If I have got UC and need steroids, I don't want to be on them long term. I hate taking medication of any kind.

As for the relaxation, I Have reflexology once every 3 weeks. I TRY and excercise refularly, but the last month I haven't even got to the gym (way too busy). I am a worrier and can't handle stress very well. I'm also doing a course at college which is stressing me out, I'm thinking of packing it in as my health & wellbeing has got to come first.

bump