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Original poster

Anyone have Chrons Disease or know anythign about it???

19 replies

jessicasmummy · 23/01/2005 20:30

My mum was a sufferer and sadly passed away due to it in August last year. I have suddenly started getting symptoms over the last few weeks and am scared it may be the same thing. From the very few websites i can find it says it can be heriditory (sp) Just wondered if anyone has any other personal experience....

OP posts:

Frizbe · 23/01/2005 20:53

Not me, but a friend has it, is on a gluten free diet, which luckily is getting easier as most supermarkets are getting better at labelling for this and you can even get good ranges of ready made food in it now! bump and get the quack to check you out {{Hugs}}

Original poster

jessicasmummy · 23/01/2005 21:24

im scared of going to docs as scared it will reveal that i have got it and i really dont think i could cope with that news at the moment. My dad is still in a bad way and i couldnt tell him.... it would pull him apart. im scared of dying i guess......

OP posts:

CountessDracula · 23/01/2005 21:30

Me, I have crohn's. I didn't know you could die from it I'm so sorry about your mum

What are your symptoms? Yes, it can be hereditary. But I must say I know of a lot of people who have it and they are all fine (as am I) - once they get the drugs right it is ok, it can take a while to get the right ones for you though.

Pls feel free to CAT me. xx

Frizbe · 23/01/2005 21:31

Oh {{{{HUGS}}}}} I'm sure the countess can help you

Original poster

jessicasmummy · 23/01/2005 21:32

symptoms at the moment are

aneamic
tired - constantly
tummy pains - constantly
tummy upset bouts lasting a few hours every couple of days

i didnt think you could die either, but basically her intestine burst due to all the pressure and bang... gone. very quick but devastating as exactly 2 weeks after dd born.

OP posts:

Original poster

jessicasmummy · 23/01/2005 21:42

bumpty bump x

OP posts:

CountessDracula · 23/01/2005 23:10

Oh god how terrible and what a dreadful time for you so soon after dd's birth (not that there is a good time for something like that).

Not so sure about your symptoms - the every couple of days bit sounds a bit odd, if I have it i just have it, there is no respite IYKWIM. Have you bleeding at all? (sorry gross I know).

However, you MUST go to the doctor as they will put you on steriods (prednisolone) immediately for a short course, if that helps then I'm afraid may be crohn's with your history. Don't be afraid of going, I cannot stress enough that what happened to your Mum is very very rare (as I'm sure you know). The sooner you can get it under control the less dangerous it is. I can honestly say that it doesn't adversly affect my life, I have short periods of illness and longer periods on the drugs afterwards, the worst thing is the side effects of the drugs tbh.

A really good source of info and support is www.nacc.org.uk

Pls do feel free to CAT me, I would be happy to talk to you on the phone/meet up if you are in London. I have done this several times for people when friends have called me to say that they know someone who has been diagnosed, it really helps to have someone to call.

NatureDoc · 24/01/2005 21:27

Its a horrid thing to have but can be helped BIG time by a good naturopath or herbalist - try Association Master Herbalists.

Levanna · 25/01/2005 01:05

jessicasmummy, my brother is convinced he has Crohns (he has had an upset tummy for the last 6 years, pretty much non stop.) He can't bring himself to go to the doctor either . (He unfortunately lives so far away from me that I can't get to him to drag him there, because I would!).
I'm so sorry to read about your mum passing away.
Please seek help, for the chance of help and relief it must be worth it?
xx

CountessDracula · 25/01/2005 10:44

jessicasmummy?

adelemouse · 25/01/2005 12:54

Hi
My sister has got Crohns disease and has had it about 3 years now.Shes 34.She was told its not hereditary but it ususally runs among siblings,not parent to child.She was on steroids etc and an anti-cancer drug for about a year until she had surgery last July to remove quite a lot of her bowel.The surgery was a success but unfortunately she contracted septicaemia which is a common thing with bowel surgery and we almost lost her.She was on life support for over 2 weeks.However,she feels great now with no sickness,bloating,constant bouts of constipation and diahrroea and she can eat what she likes now.Apart from the awful episode of nearly losing her,shes still glad she went for the surgery as she couldn't cope with the drugs making her sick and tired all the time.She tried a few different types.I hope this helps you to make the trip to the GP as its reasonably controllable if you get the right drugs but they don't work for everyone.Surgery is done for quite extreme cases only and if its ruining your life.I asked my own GP about Crohns and if it was hereditary and they said the same thing as my sisters consultant.Both me and my brother also have bouts of tummy problems but nowhere near the scale in which my sister did.She can now get on and hopefully enjoy the next ten years of her life(the average for recurrence after surgery)until she may have to have surgery again.Keep your chin up and please go to the doctors.It must be a rarity for someone to atually die from Crohns unless they contract the septacaemia like my sister and it would be most unlikely it would happen to you.
Adele

adelemouse · 25/01/2005 12:56

Hi
I forgot to mention that I read about taking turmeric tablets from a health food shop for Crohns as they work great for all the nasty symptoms.I told my sister and she said she'd try them if her syptoms returned.
Adele

Original poster

jessicasmummy · 25/01/2005 13:03

thanks for all this people!!! The chron's website had a news report that i had a 25-35% chance of contracting chrons from my mum. havent felt too bad the last few days, but havent been able to "go". im at docs next week for check up for another issue so will mention it - but im scared....

OP posts:

miam · 25/01/2005 13:04

My dad has Crohn's. Unfortunately it was misdiagnosed for years and it was only when he almost died and was admitted to hospital that it was properly diagnosed. He had part of his bowel removed (now has a colostomy bag) and is on medication. He has to avoid certain foods - mainly starches I think, but that is probably due to the colostomy. Don't want it to sound all doom and gloom, because he is doing very very well considering he was so desperately ill. Things would have been much better had the doctor diagnosed it years before though so I would say please, please go to your doctor, if only to put your mind at rest. I do know how you feel because I am always looking for symptoms in myself and the girls (one has recurring mouth-ulcers which can be a symptom) but would not hesitate contacting a doctor asap if I was worried. xx

CountessDracula · 25/01/2005 23:30

jessicasmummy I wouldn't wait. Go and get it checked out now. I don't want to scare you but when I first had it I was ill for ages, they told me when i was finally rushed to hospital that I would have died of dehydration in the next 24 hrs.

Original poster

jessicasmummy · 25/01/2005 23:31

ok.... ill call docs tomorrow. im just so scared, and tbh the thing that scares me the most is that it is confirmed, telling my dad. He has just lost my mum to it and is not coping at all well... how on earth would i tell him ive got it too. really want to cry now....

OP posts:

CountessDracula · 25/01/2005 23:38

Maybe you don't have to tell him yet. It will take quite a while to get it confirmed if indeed that is what it is.

I know it will be very hard, but I'm sure he would want to help you through it and be there for you. What do you think?

miam · 26/01/2005 09:54

JM - I'm so glad you have decided to go to the doctor. CD is right - you do not need to tell him yet, but I am sure he will be much happier knowing that if it is Crohns that you have caught it early, rather than suspecting it for a while and not going for treatment because of risking upsetting him. I think he would feel terribly, terribly guilty and upset if that had happened. I hope it all goes well for you. Hugs. xxx

caz61 · 21/04/2005 23:32

Hi JM
So sorry to hear of all you've been going thru - you haven't updated so hope you got to the docs okay. I have Crohns - have had since 1992 but took a couple of years to diagnose.....the worst part is not knowing and once I had a diagnosis I stopped fearing the worse and was able to get on dealing with it. Also, apart from the first hospital I was under, I have been looked after so well by the doctors - this has really helped me manage it as knowing you are being cared for makes the burden less. Would love to know how you got on. Sending you lots of positive and healing thoughts!!

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