Crohn's Disease

Berty

On Monday my Fiancee was having major issues with her stoma because of the after effects of stomogram/gastrograph. She was very upset and didn't know what to do.

I rang the switchboard at the regional in Limerick(desperately rude people - renowned for it) and they put me through to Marys extension. Answered first time and called my Fiancee at home(I was 460kms away) within 5 minutes. Assured he what to do and everything was ok. Simply the after affects of an enema escaping any which way. :rolleyes:

There is also a Chrons/Stoma support group and I originally spoke to a woman in Waterford/Wexford. She did give me a lot of information but frankly too much. I was only anxious for my partner and wanted some information but she dwelded way too much on the potential disaster situations.

Pinch of salt.

LucyBliss

Berty wrote: »

There is also a Chrons/Stoma support group and I originally spoke to a woman in Waterford/Wexford. She did give me a lot of information but frankly too much. I was only anxious for my partner and wanted some information but she dwelded way too much on the potential disaster situations.

Yeah, sometimes too much information can be a bad thing. I know I had to limit what I told my mother prior to my surgery because she was freaking out and I would have to tell her sternly that it was all for the good and that no matter what, I was having the surgery. When it comes to medical things, she is not in her comfort zone, but if you ever need someone to cut through bureaucratic nonsense and get information for filling out forms and whatnot, there's no better woman!

I have actually been thinking about setting up a Crohn's and/or Stoma support group here in Galway because there doesn't seem to be one (if there is, I'll gladly stand corrected) and Crohn's can be a very isolating disease. I've been to hell and back with it the past few years and I do strongly believe that when we're in remission, if we can at all, we're the ones who can best appreciate what people who are flaring are going through and can help support them.
I know it's easy to be cynical these days, but I managed to get to the other side of the flare up and through surgery with my mental state (relatively) intact so if I can help other people in any way, I'd certainly like to.

HigginsJ

What are the possibilities of having to get a stoma when suffering Crohns? When would it be required/reccomended?

Berty

HigginsJ wrote: »

What are the possibilities of having to get a stoma when suffering Crohns? When would it be required/reccomended?

Of course we can mostly only speak from experiences with ourselves or my partner in my case.

The surgeon himself didn't know until he basically performed the operation but her condition was so advanced there was no other way around it. The Stoma was guaranteed for her.

Like I said previously one other girl had the same operation that day whom was the exact same height, weight(probably) and age as my partner. She had 30cm of small intestine and her right colon removed(from memory) and my partner had 40cm of small and her right colon removed.

She didn't get a stoma but my partner did.

Who knows, I'd say until the operation.

Ask your Surgeon / Gastroentroligist.

HigginsJ

Thanks for that.

I had Op in October but didnt have nearly as much as your partner removed so guess im lucky.

LucyBliss

For me, it was that my intestine was such an ulcerated mess. My bloods showed that I had no inflammation, but the damage was done to such an extent that it just had to come out because it was causing me so much pain and I had no quality of life.

HigginsJ, how are you feeling since your operation?

HigginsJ

Since January i have been great. Bit tired from time to time (too long between my b-12 injections on occasion) but no problem after that.

Remained on low residue diet until about a month ago when finally went to dietician and she said i should look at resuming a normal diet. I have tried most things and been fine.

Not brave enough to try nuts or apples yet as i had horrible experience with them on separate occasions last year.

Hersheys

Hi folks, sorry if this is the wrong place but...

Is it possible to have Crohn's without the diarrhea? I've lots of the symptoms except instead of diarrhea I've severe constipation. I'm on the waiting list to see a consultant gastroenterologist so will hopefully have some resolve. I've chronic abdominal pain - it's really awful sometimes, I can barely get out of bed. I regularly go over a week without having a bowel movement, and that's with me being on a massively high dose of various laxatives. My tummy gets massive sometimes. I get blood in my poo (not from straining/piles - it's the wrong colour). And mucus too.

It's incredibly frustrating. And painful.

The_Conductor

Hersheys wrote: »

Hi folks, sorry if this is the wrong place but...

Is it possible to have Crohn's without the diarrhea? I've lots of the symptoms except instead of diarrhea I've severe constipation. I'm on the waiting list to see a consultant gastroenterologist so will hopefully have some resolve. I've chronic abdominal pain - it's really awful sometimes, I can barely get out of bed. I regularly go over a week without having a bowel movement, and that's with me being on a massively high dose of various laxatives. My tummy gets massive sometimes. I get blood in my poo (not from straining/piles - it's the wrong colour). And mucus too.

It's incredibly frustrating. And painful.

You really need to go to a gastroenterologist and get it properly checked out. It really wouldn't be appropriate for any of us here to comment on what it might or might not be- to be honest.

S.

The_Conductor

Had an FBC done along with my forthnightly INR at the phlebotomy clinic last wednesday. Results back in- since I had the transfusion in February, I've lost so much blood, that my haemoglobin is back below where it was when I got the transfusion....... :mad: No wonder I look like a pale zombie and feel so knackered all the time........ Wonder what they're going to do this time- I can't go for transfusions every 6 weeks, that'd be insane.......

Hersheys

smccarrick wrote: »

You really need to go to a gastroenterologist and get it properly checked out. It really wouldn't be appropriate for any of us here to comment on what it might or might not be- to be honest.

S.

Yeah I'm on the waiting list. My GP sent me on. I've been in and out of hospital for the past few years with no joy. Incredibly frustrating.

CarrickMcJoe

HigginsJ wrote: »

What are the possibilities of having to get a stoma when suffering Crohns? When would it be required/reccomended?

I agree with Berty here as the treatments available now seem to be more advanced since I had colitis.
When I was first diagnosed my surgeon said that it would be approx 10 years before I would have op, and 10 years I had that op.
Thats 14 1/2 years ago now and I have no regrets.

code187.2010

I had one of the worst cases of colitis my consultant had ever seen, nothing for it but a full colostomy, I did my research and forced him into trying a high dose of cyclosporine followed by immunosuppressers.I'm still on a wagon load of those with all the problems they cause but my colon on my last scan was perfectly normal.

HigginsJ

smccarrick wrote: »

Had an FBC done along with my forthnightly INR at the phlebotomy clinic last wednesday. Results back in- since I had the transfusion in February, I've lost so much blood, that my haemoglobin is back below where it was when I got the transfusion....... :mad: No wonder I look like a pale zombie and feel so knackered all the time........ Wonder what they're going to do this time- I can't go for transfusions every 6 weeks, that'd be insane.......

that's not good. Any idea what they are going to do?

kildareash

LucyBliss wrote: »

I have actually been thinking about setting up a Crohn's and/or Stoma support group here in Galway because there doesn't seem to be one (if there is, I'll gladly stand corrected) and Crohn's can be a very isolating disease. I've been to hell and back with it the past few years and I do strongly believe that when we're in remission, if we can at all, we're the ones who can best appreciate what people who are flaring are going through and can help support them.
I know it's easy to be cynical these days, but I managed to get to the other side of the flare up and through surgery with my mental state (relatively) intact so if I can help other people in any way, I'd certainly like to.

Hi everyone, long time since I posted here but my boyfriend had his colon removed in June 09. He had major major complications afterwards He had five major surgeries and countless other procedure between June 09 and January 10, and he will need more surgery but the surgeons are hoping to put this surgery off for as long as they can.

Anyway, I'm an information junkie and I came across the ileostomy association website just before he had his first op. I think it wasn't until he came out of hospital last year that he really got involved with the forums and as a result he met a few other Irish people on the site. They have arranged a couple of meet-ups since. I think the last time they were actually in Galway. Although they're all at different stages in their lives/illnesses etc, my OH really enjoyed the night.
He did find it a little strange at first that the others were so liberal, but it was refreshing for him too. I think there were about four or five of them that met up. They seem like a great support group for one another.
If anyone would like to get in touch with them just drop me a PM, I'm sure they would welcome a few more.
Maybe this could be the start of proper support network developing in Ireland.

wild_swan

Hey - I see mention of a support group in Galway. A few of us have met up informally in Athlone a few times & are meeting in Galway on the 30th April (The Skeff Bar, Eyre Sq) & then again in Athlone on the 21st of May (The Prince of Wales Bar). If anyone is interested in meeting up drop me a pm & I'll give you my contact details!:)

hugo32

Hi i am new to this thread. I am 23 years old and i was diagnosed with UC in September '08. I have been reading all your replies and posts and i am intrigued with what everyone has had to say. It seems from a general standpoint, that not alot of people on here are getting much joy from their prescription drugs. I for one am one of those people. I am on the verge of getting surgery due to a lack of success with all types of drugs and treatments. (Humira, predsol, imuran, methotrexate, prednisilone, asacolon, predfoam to name a few.)

I am just wondering if anyone has tried alternative routes to western medicine. I have researched many things and the raw cabbage juice fast seems like a cure to these horrible digestive diseases UC and crohns.(And yes i did use the word cure.) The idea is to go on a juice fast of just cabbage and water. Juicing 3-4 cabbages daily and consuming. Nothing else for a period of 10-14 days or so depending on the severity. The intestines recover from ulceration due to rest from solid food and the cabbage is a super food that provides nourishment and healing properties, BM's become normal and people go back to living their lives. Don't know if it works myself but i'm willing to try soon enough. Western medicine isn't always the answer especially involving digestive problems. I know this because it hasnt given me a moment of relief.

Anyone try this cabbage juice fast or anything like it? Supposedly its very successful.

After all.. you are what you eat... or in this case juice!

The_Conductor

I haven't tried cabbage juice (to be honest- in my own particular case it would quite pointless- as fluid pretty much flows right through me). The issue with me (and lots others) is that by the time we are actually diagnosed the damage is done. UC tends to be easier to diagnose- and affects a particular part of the gastrointestinal tract- whereas Crohn's can occur anywhere at all in the gastrointestinal tract- or outside. In cases where there is limited damage- perhaps a fluid diet can be beneficial- and indeed I guess most of us here have some experience of low residue diets- the cabbage juice one is just a new one on me.

Low residue diets tend to be tailored to the specific person- for example, when I have a blockage- I have a total blockage- and can't even drink water (never mind cabbage juice or anything else). In cases like that- you get put on a drip pronto......

Also- regardless of how nutritious cabbage juice is- are you going to further run down someone who has no reserves, if you're removing a large segment of high calorific foods from their diet?

My own parents were big fans of trying alternate medicine- hell, as a kid I probably took more alternate medicine than conventional medicine- but in my case- it culminated in being sent to a shrink, being told my sympthoms were psychosomatic - and eventually when I was diagnosed (at just over 6 stone in weight at totally emaciated at the age of 20)- surgery was the only option open to me. My initial 9 hour surgery had upwards of 17 separate resections- and the removal of over 14 feet of large intestine, small intestine, illeum, and further up- part of the stomach.......

What I am trying to say is- while there is a valid case for giving your intestine a chance to recover when you're in a flareup situation- you are threading on very dangerous ground if you decide to eschew conventional medicine in favour of alternate treatments.

For the record- I am certain that there are people out there who do benefit from alternate treatments- however to blindly assume that it is a panacea to illhealth is dangerous, and very worrying.

Even conventional medicine advocates low residue diets for Crohn's sufferers- normally suggesting Ensure and other 'recovery' foods in lieu of a regular diet for a period of time. I've found it helpful- after receiving surgery or other treatment- but in conjunction with these treatments, not instead of them.

Cabbage- thats a new one on me.......

E.T.

Does anyone else get flare-ups without weight loss? I've had extremely bad pain, exhaustion, bloating, diarrhoea for the last 2 months, but my weight actually goes up by a pound or two when I'm bloated. It's very uncomfortable to wear jeans, or to sleep on my side. I've finished a course of budesonide without it making a difference.

Berty

So............................ we are flying out Friday and of course the missus has a Stoma. We have not been through airport security with it before.

How do we handle it if she happens to need a pat down?

LucyBliss

Well, I went to Boston the year before last - my first ever trip with an ostomy - and I got through airport security no problem. May I recommend emptying the bag before going through security so that it is nice and flat?
However that isn't what you asked so here goes: do you have a travel certificate from the IA. I think Hollister do them as well, possibly all the big companies provide them. They're in different languages and just state that you have this appliance and the reasons why. That's one thing you can hand the person if they pat down and notice something amiss.

Now, you are quite entitled to say 'this is an ostomy bag, I wear it because of blah blah blah and if you don't mind, I'd rather not have this conversation out there in the open' or words to that effect so that you can move to a more private corner. If, and I'm just saying this so that you're aware of your rights, not to put the frighteners on, if they say 'come along to this room so that we may look into this in more detail because we have never heard of such a thing/have not filled our quota of people who must be questioned/are bored', then you just say "sure, but I'm not showing you anything until there's a doctor present". You are entitled to have a doctor there because this is a medical issue.

Oh, and I may be preaching to the choir here, but you know to put some supplies in hand luggage, yeah? Just in case the luggage gets delayed and then where will you be.
I carried my ostomy supplies, my tablets, and my box of absorbagel sachets with me to and from Boston. Both in Shannon and in Logan airport, they were more interested in the bottle of water I was drinking than anything else I was carrying!

Berty

Thanks Lucy.

We are only going as far as Glasgow and the missus is rather anxious. I googled the subject and get hearsay comments from around the world.

I thought DAA would have some information. I even went to the Heathrow website and thought "well they must have something on this".

I have already told my "missus" that if the metal detector goes off(and we will do everything to prevent this, short of walking through naked) and she is requested for a pat down then I have told her to openly tell them she has it, to point to its location and tell them "if you want to look into it then I would prefer it done in private".

As much as it is a case of anxiousness she is very shy about the Stoma let alone some DAA worker pulling and dragging at her.

The horror story of the man(google it) who was patted down wearing a Urinary bag and they squeezed it and it burst.

As we are only heading to Scotland we only have one checked bag which has only clothes and a box of spare bags. Everything else including all the "accessories" are in the carry on.(Minus the scissors which will be stowed). Bags have been pre cut already.

uuuummmmmmm one last silly question. I haven't even told her about this because I'm not sure about it. Things expand in the air in a pressurised cabin. Is it a stupid question to wonder if the stoma will actually expand or is it only air tight bags that expand?

CarrickMcJoe

Yes Berty, I was pulled asidde and patted down on my first flight in dublin.
As soon as he touched the bag I said quietly I had a stoma and that was it , every time else I was never challenged, but those cards are a great idea and I will be looking into it before I travel again.

We have sailed to France and theres no patting down there;)

Berty

Thanks Joe.

My Fiancee is very shy and very quiet and although I don't like speaking for her sometimes needs must. However, in a security queue security are very touchy and don't like being challenged by anybody but the person they are dealing with then and there.

This is why I'm asking the questions here, to inform my other half so she can be armed with the authority and conviction to say "I have a stoma, if you want to look into this then please make it private".

I googled the Stoma travel card and the little card you can put in your luggage which says "please carry out this search discreetly as products in here are for medical use blah blah blah".

Feck, we are only going with Ryanair to Prestwick. The worst that can happen to our bags is low paid staff flinging them around the airport. (or end up in Peru)

We went to France last year and the only time we were searched was a dog sniffing around our car in Pembroke on the way home. She didn't have a Stoma back then just incredibly bad cramps.(advanced chrons disease)

Concensus seems to be. If you are stopped for a frisk then quietly tell the security person " I have stoma, *point" and deal with the response "

LucyBliss

uuuummmmmmm one last silly question. I haven't even told her about this because I'm not sure about it. Things expand in the air in a pressurised cabin. Is it a stupid question to wonder if the stoma will actually expand or is it only air tight bags that expand?

Not silly at all. Yes, things will expand due to air pressure: your insides, my ankles... Most people just burp and they're fine. With an intestinal complaint, it makes your insides uncomfortable, and when you have a stoma, the gas simply passes into the bag.
They do recommend popping into the bathroom to 'burp' the bag while on a flight. Sometimes when you're sitting down, the bag can seem fuller than it is. I mean, I got up to the airplane toilet convinced the bag was full to the brim and was fit to explode and when I got in there, it was just a bit of wind. :rolleyes:

You're quite right, Berty, to check things out before hand. After all, forewarned is forearmed, as they say. I hope you both have a lovely time in Glasgow! I find it very liberating these days to be able to go places without pains and cramps and toilet dashes and general unpleasantness and I hope it turns out to be the same for her.

beetlefan

bigbadcon wrote: »

Bit of a longshot here....

Myself and my wife are thinking of applying for an australian visa (skilled Migrant Visa 175) and im wondering has anyone by any chance had to do a medical for an australian visa and failed due to crohns disease?

I found one case online where someone said that they failed the medical but were on Infliximab which is quite expensive and they were guessing it was because of the price of medication that the aussie government refused the application.

Im currently on Imuran 150mg and entocort 6mg and have quite mild crohns disease.

Thanks in advance...

Hi, i have had this lovely disease for the past 15 years or more. i had an operation 14 years ago and have been relatively ok since but my mortgage insurance was doubled due to having it and travel insurance companies will exclude it from cover also. Has anyone found any company willing to cover crohns for holidays?

CarrickMcJoe

LucyBliss wrote: »

Not silly at all. Yes, things will expand due to air pressure: your insides, my ankles... Most people just burp and they're fine. With an intestinal complaint, it makes your insides uncomfortable, and when you have a stoma, the gas simply passes into the bag.
They do recommend popping into the bathroom to 'burp' the bag while on a flight. Sometimes when you're sitting down, the bag can seem fuller than it is. I mean, I got up to the airplane toilet convinced the bag was full to the brim and was fit to explode and when I got in there, it was just a bit of wind. :rolleyes:.

On a lighter side, I took my son to a Liverpool game and on the coach on the way back the bag was full of wind. We were sitting faciing the toilet but I didnt want to use it due to the (well) odour.
Anyway there were guys from Drogheda who had a few in them and one of them went to the bog. I released the excess air and said nothing.

When the guys were dropped off, some other fellas from Belfast started talking about them, about how loud they were etc. Then one said, "Jesus what about yer man that went to the jax, fcuk me, something must have crawled up him and died!

Bodhidharma

Hi everyone. I was diagnosed with Crohn's Disease yesterday. I was expecting it as I had surgery a few weeks ago and it was suggested by the surgeon that it looked like Crohn's as I had quite a few strictures in the small intestine, of whch a part was removed.

I have only begun my research and I intend to read through this entire thread, but I was wondering if perhaps some people could give me a short response about how they are living with the disease, the initial difficulties you faced, and how you look at it now. Any help would be much appreciated and I am glad to see that there is a thread for this as it looks to be very helpful.

I have not yet met my gastroenterologist since the surgery so I have not been told what treatment I will be given.

alexjk

I am going to be cooking for someone with Crohn's and I wanted advice/opinions on what is ok to cook. I am coeliac myself so I was wondering if I make the recipes dairy free as well would that be suitable or are there other things I should swap around? I plan on making bread and possibly lasagne.

The_Conductor

alexjk wrote: »

I am going to be cooking for someone with Crohn's and I wanted advice/opinions on what is ok to cook. I am coeliac myself so I was wondering if I make the recipes dairy free as well would that be suitable or are there other things I should swap around? I plan on making bread and possibly lasagne.

Ask them- Crohn's affects different people in different ways- there isn't a definitive good food or bad food list- it depends on what they can eat- and a lot of that will only be determined from trial and error. There isn't a list of food to avoid- indeed many foods that he/she is not able to eat when their Crohn's is active, will be just fine when its not active....... My trigger foods include anything with maize in it- including cornflakes. Ask them.