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Original poster

Anyone else with Crohn's Diease or IBD?

63 replies

roseylea · 27/12/2006 09:40

I have Crohn's and I'm having a nasty nasty flare-up atm.

I'm just so sick of it. I'm in pain all the time.

I just wanted to see if there's anyone else with this...

OP posts:
myturn · 27/12/2006 10:08

My dad has Crohns and I know what he goes through so I can really sympathise with you.

lulumama · 27/12/2006 10:24

i have crohns..luckily not had a bad flare up for a number of years...but i was very poorly with the last one...BUT that was before i had been diagnosed...so was told i had IBS or food poisoning you have my total and utter sympathy,.it is a wretched, painful , embarrasing and nasty illness to contend with and i know i am so lucky mine is under control...

are you taking meds, steroids etc...is surgery an option> hae you seen a gastroenterologist?

Original poster
roseylea · 27/12/2006 10:42

Hi and thank you!

Thank you for your sympathy Myturn!

Lulumama, I've had Crohn's for over 10 yrs now. I was taking prednisolone for a lot of that time (on and off) but it got to the point about 2 yrs ago when I felt that I couldn't do that to my body any more, what with all the side-effects and the worry of long term damage to my health. So I'm just on Pentasa now which is kind of effective but certainly no miracle cure. I've tried other drugs like Azathioprine but they made me very sick.

Thankfully I've never needed surgery. My gastroenterologist is lovely - I'm seeing him in a couple of weeks' time.

I've not been well for the last few months, but it's been the last two weeks that I've been relly ill. I just feel so drained!

Are yo on any meds Lulumama or do you not need them?

OP posts:
lulumama · 27/12/2006 10:55

i;ve not been on meds for over 2 years now, i was on mesalazine.....

when i was trying for DD, i came off them, that was 2 years and 2 months ago....ahd the odd bout of it, but only for a day or two, and some pains, but nothing like as bad, i know i can;t get away with it for ever, but i have been lucky so far..

i think people forget it is a chronic, incurable disease..and it can comeback anytime.....that is the horrible bit, that it never goes away permanently..

a few people have recommended aloe vera....don;t know if it does any good..., might be worth a try? in addition to the meds

i am due another colonoscopy as was due one when pregnany..,and DD 16 months old !

i have had crohns for 15 years, only diagnosed for 4 years though....

Original poster
roseylea · 27/12/2006 11:02

Aloe Vera actually makes me much much worse! Liqurice and peppermint oil help. Over the last couple of yrs I have gone on various dietary treatments. I did one meat, wheat, dairy, processed, sugar etc free diet
which did make a difference. I've also done on diet where you only have special IBD drinks and no food at all for a couple of months. Not much fun but if you're really poorly it's worth it.

Yuk...coloncoscopies!

OP posts:
lulumama · 27/12/2006 11:21

you must have it very badly to have the 'no food' regime......

i know there are others with crohns & IBD on mnet.....i think it is just quiet at the moment , because of christmas..you could see about an on-line support group?

do you belong to the NACC?

Original poster
roseylea · 27/12/2006 11:49

Well, I don't know about 'very bad'...from the pov that you never know the extent of others' suffering.

Bizarrely, my Dad works for NACC! Not in any medical sense, tho, but as a buildings engineer. So yes we are members!

OP posts:
DingDongDraculaOnHigh · 27/12/2006 12:29

hi roseylea, I have had crohn's for about 18 years - I have been on azathioprine for about the last 10 which fortunately I tolerate well - am allergic to sulpha drugs so can't take asacol, sulfasalazine etc.

Have you tried Budesonide - it's a newish steroid which doesn't cause the same side effects as pred. It sort of targets the colon and is more local, less systemic.

It is also worth looking into Infliximab (I think it is called) which is a steroid-sparing infusion - I have not had it yet but due to my bones starting to thin with prolonged steriod use they have said that they will give me this if I have another attack, it is supposed to be very good. more info here

I feel so sorry for you it is MISERABLE when you are in the throws of an attack. Do you have plenty of support and help?

Original poster
roseylea · 27/12/2006 14:45

Hi Dracula!

Good to know it's not just me.

This is my first big flare-up in a couple of years - recently Pentasa has been enough to keep things under control. I went back to work in Sept after 4 yrs as a SAHM and I think it's the stress of work that has set this attack off.

Support and help...hmmm...dh finds it very draining going through it all with me! He suffers from depression and he's pretty low atm...

So I always find myself playing down how bad it really is, even to him and certainly to the dcs (who are only v. little still). My mum is supportive but she finds it knackering being with the dcs so I don't feel I can ask her too often. It's like people always ask how I am, expecting me to say 'oh, much better, thanks' but when you have to say, yet again that you're still feeling rubbish people do tend to lose interest somewhat. Or maybe they just don't know what to say.

I'll have a good look at the stuff you linked for me, and think about it...I've got an appt with my gastro soon so it'd be good to have something to suggest. Thanks!

OP posts:
apartridgeinapeachygirltree · 27/12/2006 15:08

Hi rosylea,
My DH has Crohns and was diagnosed in 2000. He has been really well for several years now, he's on Azacol and was on immunosupressants. However in the last two days he has had a bit of blood and has been saying he feels a bit 'crohny'.
Really sorry to hear you are having a bad time of it.
He does find it useful to take a good multi vitamin with probiotics in it.
Thinking of you

strawberrydream · 27/12/2006 19:51

Hi roseylea. Sorry to gatecrash your thread but can you tell me the symptoms of Crohns. I have a colonoscopy booked for 3 weeks time and i am dreading it. i saw a Gastro last week and he diagnosed IBS but I am being checked for crohns as it runs in my family.

my symptoms include, feeling constipated and then days later feeling loose and needing to rush to the nearest toilet, but when i go to the loo there isn't much there IUKWIM. i get the need to rush to the loo whenever i am out shopping or in social situations, i also suffer with bad trapped wind and my stomach makes very loud grumbling noises which can be embarassing. not sure if it is IBS or crohns, I have also had blood in my stools once or twice and have mucus when I wipe, sorry to be so graphic but i know this cannot be right.

i guess i will know in 3 weeks time, just wanted to know what your symptoms were before you were diagnosed. If anyone else with crohns reads this can you tell me what your symptoms were please. Thanks.

Original poster
roseylea · 27/12/2006 20:03

Hi Peachygirl and Strawberrydream!

Multivits with probiotics do sound like a good idea. Does your dh use the drink type probiotics (like Yakult etc) or something else?

Strawberrydream, you poor thing. Yuk yuk yuk. My symptoms went on for ages before I was diagnosed but basically were to do with huge pain in my stomach, stomach cramps, total loss of appetite, diarrohea (sp?!?) and vomiting after eating, feeling weak and faint (due to lack of nutrition) and being very tired all the time. At one point even water made me sick and I could hardly walk because the pain in my stomach was so bad.

Thankfully it's never been that bad since I've been on meds but I am keen to avoid steroids as they can lead to other problems even tho they do deal very efficiently with the inflammation.

So I hope your appt goes well and that you get some good answers! Let us know how you get on. Don't be alarmed by other people's experiences tho - what I've said here is just me. The bowel is so sensitive and there are so many things that can make it go funny. Let's hope yours is not too bad!

OP posts:
DingDongDraculaOnHigh · 27/12/2006 20:15

strawberrydream I'm afraid mucus and blood and the symptoms you describe do sound like Crohn's or UC However there are a lot of other things they could be. Fingers crossed for you xx

Roseylea you could also ask about Elemental E028 drinks - they are great - you don't need to eat anything and they are absorbed in your stomach so you get your vits and minerals even when you are really bad. I have used them many times when eating is just too painful or horrible.

strawberrydream · 27/12/2006 20:20

Thanks roseylea. some of the symptoms you describe are similar to what i have experienced although i am not experienceing them at the moment. i tend to get symptoms like you described every few months, the loose tummy, loss of apetite, weight loss, fatigue.
thanks for your reply. i will let you know how i get on.

strawberrydream · 27/12/2006 20:24

Dracula where can I get the Elemental drinks from? Is UC and Crohns the same thing?

DingDongDraculaOnHigh · 27/12/2006 20:27

You can ask your gp or consultant
Mine referred me to a dietician who gave

The NACC site will help you
this explains the differnces

apartridgeinapeachygirltree · 27/12/2006 20:29

My dh has the multibionta vitamins with the probiotics. They are quite expensive but he gets them in the Boots three for two offers. There has been quite a lot of recent research about probiotics and IBD.
manuka honey is also thought to be very good but you need to get a high strength jar and eat quite a lot of it
We are also members of NACC and last year did the sponsored walk in london which was lots of fun. We will probably do it again this year (hopefully with a new baby who will have arrived by then)

Original poster
roseylea · 28/12/2006 08:56

Hi Dracula!

I was on the Elemental drinks last year - they are still on my repeat prescription list so I might think about doing that again.

Still painful this morning but not quite as bad...

OP posts:
lulumama · 28/12/2006 09:49

strawberrydream.. i replied on your other thread..hope you are ok.let us know how you get on x

Simplyred · 28/12/2006 18:42

Hello!

Have been having intervals of bad stomach recently - 6 months good - 6 months bad! It started with high dosage of antibiotics 18 months ago. My doctor says ibs and is not very helpful - it still troubles me that more serious illness have the same symptoms. How were you good people diagnosed? {sp?}

peachygirl · 28/12/2006 18:45

simplyred, Dh had a colonoscopy. the ulcers connected to Crohns and colitus are very obvious. Maybe you should ask for a second opinion as I believe DH's IBD stems from prolonged antibiotic use when we were at uni

strawberrydream · 28/12/2006 18:51

simplyred - sounds like IBS although until you have a colonoscopy you won't know for sure. i have one in 3 weeks time. i was diagnosed last week with IBS but the gastro is checking for Crohns as it runs in my family.
another thing you need to check for is Candida overgrowth, this can cause the symptoms you describe especially from the over use of antibiotics.

lulumama · 28/12/2006 18:54

colonoscopy after a sigmoidoscopy....

years of intense stomach pains, like labour,

nausea, vomiting, low grade fever, extreme tiredness, blood and mucus loss when going to the loo, and lots of trip s to the loo .

Simplyred · 28/12/2006 19:15

Sorry to hi-jack the thread roseylea - it sounds like many of us suffer.

What is a sigmoidoscopy? Can't say the pains are any way near as bad as labour - more annoying rheumatics in lower tum and around my lower back. Not been sick but do fell nausea sometimes. Yucky mucus is not too good - but not sure if I've seen any blood -probably not - however, I am developing a very embarrassing 'catch it on tissue and stare at it' fixation - which is not at all sexy!! Sorry far TMI!!

lulumama · 28/12/2006 19:18

it is an investigation into the first part of the bowel, done at the docs, whereas colonoscopy explores much more of the colon and done in hospital under sedation