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Original poster

Does anybody else have Crohn's Disease?

26 replies

baggybear · 17/11/2004 22:39

Hi! I'm pretty new to MN and so far i've had great fun chatting to lots of you. Thanx for the company on these long cold evenings

Just wondering if any of you out there are Crohn's sufferers. I've been diagnosed for about 3 years now (although i had been suffering much longer than 3 years, but doctor was not very helpful).

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CountessDracula · 17/11/2004 23:13

Hi baggybear, yes I have Crohn's, have had for about 15 years and yes it was a nightmare getting it diagnosed too!

I control it pretty well most of the time with azathioprine as I am allergic to the sulfa drugs eg asacol, salazopyrine etc. Still have bouts on steriods esp when I was pg with dd - spent 18 months on prednisolone which was vile.

How are you with it? What meds do you take? And who is your consultant?

mummylove · 17/11/2004 23:33

sorry being nosy - what is crohns disease?

Original poster
baggybear · 17/11/2004 23:41

disease of the bowel, although apparently it can effect anywhere from the mouth to, well, the other end! I am in "remission" at the moment, but it can flare up at any time. After i had ds2 i had a flare up and i lost nearly 2 stone in 2 weeks, couldn't eat, was vomitting and was visiting the toilet about 12-15 times a day plus i had side effects such as arthritis in my hands and feet, blurred vision and very painful lumps on my lower legs. and all this happened when ds1 was 18months and ds2 was 4 months old.

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Original poster
baggybear · 17/11/2004 23:46

sorry countess, missed your bit (half asleep ). i'm taking nothing at the mo, but was on asacol. i'm touching wood and crossing fingers and toes whilst saying this but i've been free of symptoms since i fell preg with ds3 (he's 16 months now)

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Original poster
baggybear · 17/11/2004 23:47

countess- and why do drs always think it is "just ibs"??????????????????? it makes me cross

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Original poster
baggybear · 17/11/2004 23:52

countess- i am off to bed now (cream crackered after the day i've had) so i will catch up with you really soon. its nice to find somebody to chat to about this and how it affect life with a family.

catch up v soon xx night night xx

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fisil · 18/11/2004 07:32

I've not got Crohn's but I had five years of surgery associated with Crohn's (Drs and nurses kept stopping by my bed saying "ah, you've had such-and-such done, so how long have you had Crohn's?). I can't imagine that kind of discomfort on top of the bowels symptoms too. I think you're amazing to cope with something like that.

lou33 · 18/11/2004 10:10

I don't have crohn's but i have ulcerative colitis.

NatureDoc · 18/11/2004 11:49

There are loads of natural remedies - get in touch with Guild of Naturopathic Iridologists (www.gni-international.org) - herbs such as slippery elm, marshmallow root, aloe vera really help to control Crohn's and Colitis - I have had huge success with people with this condition.

Original poster
baggybear · 18/11/2004 18:29

Fisil - thanx hun . Just get on with things day to day, but as i said, touch wood i'm symptom free at the mo (thank goodness!) now i have 3 to run around after i think a flare up would really set me back. wot surgery did you have done?

Lou33 - how do you deal with your UC?

NatureDoc - thanx for the advice. will be taking a good look at that website tonight i would rather try natural remedies than pump a load of chemicals into my body.

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Twiglett · 18/11/2004 18:36

I don't... but DH has ankylosing spondilitis which is one of the family of illnesses grouped together with chrons (he's also got psoriatic arthritis)

Just wanted to extend a hand of friendship

If there's anything you'd like to know about the secondary arthritis side .. we've kind of BTDT

But most importantly WELCOME

Original poster
baggybear · 18/11/2004 18:46

thanx twiglett, it is REALLY nice to know there are others out there that understand. the arthritis was awful because my ds2 was just 4 months old so picking him up was so painful, esp 1st thing in the morning. was frightened to take the painkillers incase i didn't feel the pain and i fell down the stairs with him or somethng. very scary. how is your dh at the mo?

and lou33 and fisil - how are you both at the mo?

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fisil · 18/11/2004 19:12

my surgery was succesful (in the end - took several attempts over the five years to sort it out). And as the problem was caused by my failure to heal after cysts were removed, I reckon it shouldn't happen again (unless I get another cyst, or tear really badly down there - fingers crossed!).

Do you have special dietry stuff you have to follow? A student of mine once told me what she had to do, and it sounded awful!

Original poster
baggybear · 18/11/2004 19:32

fisil - no not really. talking to different sufferers, different foods affect different people. when i'm not too good, i have to steer clear of spicy foods and greasy stuff gives me the trots even when i'm well lol! so curries are out of the question. but i still eat them sometimes and just except the outcome. i'm ok on wheat tho which some people have to watch. and (bit controversial) milk can aggrivate crohns so if i get badgain i will cut dairy out - will try anything!

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pebbles2004pebbles · 19/11/2004 09:51

Hi there, Sorry, I'm new to this site, but this thread interested me. My mum was a long term sufferer of Chron's and sadly died of the condition in early august... that to deal with when baby daughter was only 2 weeks old was a nightmare and i still find it really tough. I know this isnt really related to being able to assist but feel for you terribly as I know what my mum went through for a good 18 years.

Original poster
baggybear · 19/11/2004 19:25

pebbles2004- i'm really sorry to hear about your mum. what a terrible time for you it must have been. i don't mean to be rude and intrusive (and tell me if you'd rather not talk about it) but my consultant told me that crohns is no longer considered fatal. reading your terrible news has worried me slightly, and i am interested to know how the crohns caused such an awful outcome. like i say, if you'd rather not say, then i totally understand and respect you for it.

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Original poster
baggybear · 19/11/2004 19:26

by the way pebbles2004, i too am new to this site just this week. you'll love it and get totally addicted

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CountessDracula · 19/11/2004 20:11

Hi baggybear - you sound like you get all the same symptoms as I do, ie arthritis, iritis, erythema nodosum (the leg lumps) etc.

It is v. dull, I can remember getting very depressed at the steriods - when I was first diagnosed I weighed 6 stone and came out of hospital 3 weeks later weighing 11 stone!!! And I hadn't been allowed to eat for most of that time - the IV steroids had just puffed me up so badly. That is really what I hate about Crohn's, I can cope with most of it but the side effects of the steriods make me really unhappy

Must say, no-one ever mentioned IBS to me - was it recognised as a condition in 1989? I had been ill for months but for some reason attributed it to a dodgy curry in Stoke Newington (I know how thick)

Pebbles that is awful for you about your mum. How sad. And what a terrible thing to have to cope with when your child was so newly born.

Baggy what did you do about MMR? I opted for single vacs in the end as I was so worried about the crohn's issue.

pebbles2004pebbles · 19/11/2004 20:19

Hi guys. Dont worry about coming accross as intrusive, its not a problem. Mum basically just got up off the sofa and collapsed and died, later found out (thanks to coroners report) that her intestine had burst and this was as a result of her Chron's disease. I would reccoment speaking to the National Association for Colitis and Chron's (NACC) as they hold a lot of info on this sort of thing. I didnt want to worry any of you, my mum had it very bad and was very poorly on her bad days and just in mild pain on her good days. It was a total shock to the system, luckily she managed to see my gorgeous little girl when she was born and had spend the day previous to her death showing Jessica off to all her friends at work, so at least they remember her as a proud Grandma. I feel for everyone with the condition, and hope that with the help of the NACC we can one day get a cure so that no-one else has to ever suffer... a long way off yet I know but we all have our dreams. Hope this answers some of what you wanted to know - dont feel bad about contacting me, I find it helps to talk to strangers about it to be honest!

pebbles2004pebbles · 19/11/2004 20:20

SORRY - was a bit long winded!!

Original poster
baggybear · 19/11/2004 22:17

countess- we're like peas in a pod!! the one good thing about crohns is i get to do a lot of reading (on the toilet on my MANY trips to it!!!!) I went back and forth to my GP for 7 years complaining of stomach cramping, diarrehoa (spelling???), terrible wind, and generally feeling crpy most of the time. I wasn't until i fell really ill in nov 2000 that things started to get noticed. Loads had happened in my life (had ds2, moved house 4 days after birth, nan who i was v close to died and also had a 18month old ds) so i had a lot of stress. Got really ill with sickness and diarreha, lost loads of weight v quickly and had those lumps all over my lower legs, went to one GP told me it was a virus and gave me antisickness pills. went back week later no better and just gave me different pills. got fed up so saw another doc and she referred me (thank God). that was xmas 2000 and was finally diagnosed june 2001. gave me asacol and things improved straight away. never (touch wood) had to have steroids but understand the side effects so sympathise with you. funny you saying you htought you'd eaten a dodgy curry coz i thought i had eaten a rough mcDs burger!!!!

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Original poster
baggybear · 19/11/2004 22:23

pebbles - i'm glad your mum got to see your dd. im sure she was a very proud grandmother. I find it helps to talk to strangers about things too. thats one of the reasons i posted here. if ever you want to talk i'm a pretty good listener

I've made a few friends through having CD, and we try to laugh about it to make it easier. I think if i didn't laugh i would probably get extremely depressed. I worry about things like ending up with a bag and what my DH would do if that happened or being so ill i can't take care of my kids. So to get me over these worries i just laugh about it. Silly, I know.

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Original poster
baggybear · 19/11/2004 22:28

countess - about MMR. didn't know I had CD when i had DS1&2 vaccinated but I decided to give ds3 the MMR. I am breastfeeding him (now 16months) to give him a good start. He never had any formula (not that i am knoking bottlefeeding - not getting into any heated discussions like i found myself in on my first night on MN!!!! ) so i hope i have done a good thing there. I worry about my ds's getting measles mumps and rubella where we are as we have a very low vaccine rate in our area so there are a lot of cases of these diseases.

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spartamum · 20/11/2004 22:42

Greetings BB and good on you for getting on with life and kids regardless. I've been diagnosed for 20-odd years now and had ds 15 weeks ago, whoopee! Am now doing pelvic floor exercises as if my life depended on it.
Sounds as though you're having no probs breastfeeding - anyone else out there with CD having interesting times? Call me feeble, but I'm on the point of packing it in.
Agree with you on the MMR vaccine and will do likewise. I was unconvinced that there was any link between MMR and Crohn's before I saw C4's Dispatches prog a few nights ago, twice as unconvinced now. GP Mike Fitzpatrick has written a decent book on the subject, MMR: What Parents Need To Know, if you fancy a good read.

CountessDracula · 20/11/2004 23:42

Hi Spartamum - didn't realise there were so many mumsnetters with Crohns.

FWIW I made my MMR decision after talking to a number of Consultant Immunologists who said that if they had Crohns they would definitely NOT give their kids MMR. Now what exactly they based that on I can't tell you as I am not medical, however they had very convincing sounding arguments! This was mainly in social situations, one, however, was on the phone at St Georges in Tooting - I called to make an appt to see an immunologist to discuss this and ended up on the phone for half an hour to a bloke who agreed to give me his opinions on a strictly no names basis.

Don't know if you have seen the thread on the terrible dispatches programme here. Personally I thought it was a pile of crap! Not that I agree with Andrew Wakefield, I just thought it was so badly made, one-sided and sensationalist that it was not worth watching.