Crohn's Disease

degrassinoel

Hello,

Just noticed this thread now (hadnt been looking), i've had crohn's disease since my mid-twenties,(now 32) diagnosed after about 2 years worth of testing in the stephen doyle endoscopy unit in beaumount.
I lost about 5 stone in weight at my sickest, couldnt eat or drink anything, ended up being hospitalized, dripped and put onto steroids.
I cant remember the name of the drug i was prescribed afterwards, but it was about the same size as a digestive biscuit and cost about 100 IRP per month - to which end, it actually made me sicker than i had ever been.
I was taken off that drug and given the option of surgery, i chose not to.

Basiclly i was given a speech by the doctor that did not convince me that the disease would be eradicated, and was given a 50% chance of having no relapses. So i was afraid to get the operation done, for many reasons, including my weight, mrsa, and even vanity.
After all that i pretty much gave up on traditonal medicine and decided to find my own diet.
I'm aware that my current diet which is basiclly just meat and pasta/rice and chocolate is unhealthy and wouldnt suit everyone who has the disease.
I probably sound like a loony living like this the past few years, as i'm exhausted tired constantly, losing and gaining weight & muscle every few weeks from diaherhea attacks, but i am scared to death of the surgery and will only use it as a last deathly resort.
The thing is, with how i live with this disease, i cannot keep stable employment due to periods of sickness/fatigue and even embarrassment. I've lost three decent jobs in the last three years, and on top of the disease, depression is now a factor.

Are there any other options other than surgery for me?

Sorry for the huge post, i know most of it is kind of frenetic, but i dont get to talk to people who know what its like to have this disease very often. Guess i just need to vent a little

The_Conductor

Welcome Degrassinoel. Its not a hugh post by any means! Feel free to vent or discuss to your hearts content.

Best wishes,

SMcCarrick

degrassinoel

Cheers
I've actually found it very awkward to talk about having crohn's to anyone, but it is good to see that i can talk about it without having such a red face as i would in person lol

lip

Hi,degrassinoel,vent away,we all need someone to rant to and sometimes its easier to do that with strangers.Sorry to hear that you haven't been able to control the disease.I learned a long time ago that if I don't take my medication,I will suffer the consequences.There are a few treatments,which have been discussed here.I am now on Humira injections,Imuran and entocort,but will be having another operation soon as nothing seems to be working and surgery is my only option.I am not happy about it,but TBH,I willl let them do anything at this stage so I can get my life back.Unfortunately,there are no gaurantees that it won't come back again,but if I even get a few years symptom free I'll be happy.You should talk again to your GI,you may respond well to other treatment.
Good luck.

degrassinoel

Heya's thanks for the welcome and the wellwishes

Just curious about the humira injections, has anyone had any negative experiances/side-effects with this treatment?
How often would an injection be needed?
and would it be administered by a gp or taken by yourself at home?
is it available on the medi-card - if not how much does it cost?

probably should be asking my doctor these questions lol

kildareash

smccarrick wrote: »

Its not the case that life goes back to normal after surgery

Hi Smccarrick,
Sorry to hear you're having a flare up at the minute, I really hope it eases soon.

I wasn't clear on my post...we realise we are going to have to find a new "normal" but I think that once he is back on his feet, we won't be so restricted by the condition.

I didn't mean that he'll be back eating and drinking all sorts, I'm not that niave.
But we're in our mid-twenties and he hasn't been able to socialise with his friends much in the last year.
Even before his op when they wld call over to the house, we had to make sure there was someone with him so he didn't feel bad about running to the toilet every five minutes and leaving his friends to entertain themselves.

This wasn't a decision that he/we made lightly, but we didn't feel like there was any other options. And after all the complications since the surgery, sometimes I've been left wondering is it all worth it.

But for us, the operation offered some freedom from the symptoms of the condition.

The_Conductor

kildareash wrote: »

Hi Smccarrick,
Sorry to hear you're having a flare up at the minute, I really hope it eases soon.

I wasn't clear on my post...we realise we are going to have to find a new "normal" but I think that once he is back on his feet, we won't be so restricted by the condition.

I didn't mean that he'll be back eating and drinking all sorts, I'm not that niave.
But we're in our mid-twenties and he hasn't been able to socialise with his friends much in the last year.
Even before his op when they wld call over to the house, we had to make sure there was someone with him so he didn't feel bad about running to the toilet every five minutes and leaving his friends to entertain themselves.

This wasn't a decision that he/we made lightly, but we didn't feel like there was any other options. And after all the complications since the surgery, sometimes I've been left wondering is it all worth it.

But for us, the operation offered some freedom from the symptoms of the condition.

Thanks Ash- I'm back on prednisolone again, and have an appointment with the consultant for next week- so fingers crossed. I've been on Imuran for ages- so its high times I had a FBC done.

The surgery I had was well worth while, and gave me an entirely new lease on life. My standard of living before the op and the constant pain- cannot be expressed in words- suffice to say- I often didn't sleep for days with the pain and would sit looking out the window willing dawn to come, so other people would be moving around again, and it wasn't so lonely.

Its not possible to suggest that one person's experiences equate to anothers, or to suggest that my experiences with remission and recurrence will have any bearing whatsoever on those experienced by your other half. All I can really say- is that I was an entirely different person after the surgery- and the psychological boost along with everything else- made facing further surgery years later- far easier than it otherwise might have been.

The very best of good luck to your other half- sorry I'm not as chirpy as I normally am.

Shane

lip

Smccarrick,know what you mean about not feeling very chirpy.Ido try,I'm normally a very optimistic person,but lately I'm becoming more and more negative.
In for barium follow through tomorrow,really not looking forward to it,YUCK.I tend to just drink it as quick as possible,get it over with fast.Still no date for the other test,long story,but basically,as soon as I left the hospital,I think they forgot about me.Got the bill today,can't believe I am expected to pay for 10 days in hospital when they did absolutely nothing.I was on the same meds,including pain killers.
Anyway,hope everyones well today.

LegacyUser

Hi my bf had a colostomy a few years ago, it's not well placed on his stomach, and is often visable hanging out the bottom of his tshirt. i'm not joking! I've tried taking a sensitive approach, but am met with anger because he takes it personally. i know it may sound harsh of me but it is embarrassing and he says he doesn't care anymore and i'm rude to mention it. we have young children and i think he is rude not to consider that their friends might see it and make fun of our kids. not to mention the fact that this is a private thing and most people do not want to see it. i'm at my wits end. i really try not to go anywhere now because i'm too mortified when the bag is hanging out. sorry, i'm just getting really down about it and i know its not going to change. he just doesn't see that there's anything wrong with people seeing it!

5k runner

Hi bernie Iam a 23year old male with a colostomy bag just over a year now. While I am not ashamed about my bag at all. It is something I keep completed covered from people. Obviously my family/friends know I have it+thats fine as they understand why I have it and how it has given me an opportunity of excellent quality of life. However I feel if strangers where to see it hanging out they would not understand +look at me differently until it was explained to them.

So I really dont think you should feel bad for the way your feeling you have every right to be angry. A suggestion I have is that when I first was getting used to the bag I went to the chemist and bought 7pairs of special tight boxer shorts especially designed to cover up my bag. These are so good that even when I am in the gym/out running (i wear shorts and singlet while doing this) there is know way to see my bag at all to a point where loads of my good friends have said to me do you really have a bag!!? Which obviously made me feel great. As already stated above I am not ashamed of my bag at all am actually very proud of it however as you said yourself its a private thing and not for strangers to see. Maybe suggest the boxer shorts to your husband? Hope that helped.

kildareash

5k runner wrote: »

I went to the chemist and bought 7pairs of special tight boxer shorts especially designed to cover up my bag.

Hi 5k runner,
Just a quick question did you chemist readily stock those boxer shots or did they have to order them?

Also, does anyone know of any Irish companies that do colostomy belts and other accessories? I've found a few American companies, but obviously we'd prefer to buy Irish.

Choice One

Hi All,
Bit of a long post..........
Have decided that its time for me to start eating properly and am just looking for any advice you may have…..
Just a bit of background, when I was 17 I was diagnosed with Crohns disease which is now about 12years ago.It was eventually treated by surgery and although I was cured of crohns is still suffer from stomach cramps,diarohha,tiredness etc…..

So anyway I was always a fussy eater and now my condition does `t help as certain foods can disagree with me such as some fruit and veg.But being a fussy eater I didn’t eat veg anyway.I don`t take any medication although I should be getting b12 injections, just some multivitians. Heres basically what I eat:

BREAKFAST
Tea and toast
Tea \ toast and cereal (at weekends )

Tea and couple of biscuits and 11am

LUNCH
Crisps and bar of chocolate or
Sausage sandwich or sometimes I skip it all together

Tea and couple of biscuits and 3 pm

DINNER
Chicken fillet, roast potatoes and gravy
Chops roast potatoes and gravy
Mince roast potatoes and gravy
Steak roast potatoes and gravy
With glass of 7UP followed by tea and couple of biscuits

I’d pick at food for the evening such as crisps\biscuits\peanuts

WEEKENDS
Take always , bottle of wine or cans of bulmers

Generally have tea \toast and cereal before bed.

Looking at it now I realise how bad my diet is! By the way I take tow sugars in my tea!
I`m not a food person, it is just a means to en end for me, I do occasionally eat pasta or rice, I just find them really bland as I don’t like the sauces with them so eat them on their own. Also I don’t exercise at all as I’m too tired in the evening and can’t motivate myself to do anything.
So has anyone advice on where to begin?????

5k runner

Hi, em no they didnt stock them+unfortunetly I dont think many of the irish chemists do. They had to order them in for me from the UK. Only took about ten days to get. There are a couple of different styles so be careful when choosing so that you get the right one that you will feel comfortable in.

Would highly recommend them tho, have been brilliant for me.

The_Conductor

Give the pharmacy on the corner of Aungier Street as you're heading up towards the canal (sorry I can't for the life of me think of its name) a try. They have loads of unusual medical related paraphrenalia- I've found them very useful.

LegacyUser

Choice One wrote: »

Hi All,
Bit of a long post..........
Have decided that its time for me to start eating properly and am just looking for any advice you may have…..
Just a bit of background, when I was 17 I was diagnosed with Crohns disease which is now about 12years ago.It was eventually treated by surgery and although I was cured of crohns is still suffer from stomach cramps,diarohha,tiredness etc…..

So anyway I was always a fussy eater and now my condition does `t help as certain foods can disagree with me such as some fruit and veg.But being a fussy eater I didn’t eat veg anyway.I don`t take any medication although I should be getting b12 injections, just some multivitians. Heres basically what I eat:

BREAKFAST
Tea and toast
Tea \ toast and cereal (at weekends )

Tea and couple of biscuits and 11am

LUNCH
Crisps and bar of chocolate or
Sausage sandwich or sometimes I skip it all together

Tea and couple of biscuits and 3 pm

DINNER
Chicken fillet, roast potatoes and gravy
Chops roast potatoes and gravy
Mince roast potatoes and gravy
Steak roast potatoes and gravy
With glass of 7UP followed by tea and couple of biscuits

I’d pick at food for the evening such as crisps\biscuits\peanuts

WEEKENDS
Take always , bottle of wine or cans of bulmers

Generally have tea \toast and cereal before bed.

Looking at it now I realise how bad my diet is! By the way I take tow sugars in my tea!
I`m not a food person, it is just a means to en end for me, I do occasionally eat pasta or rice, I just find them really bland as I don’t like the sauces with them so eat them on their own. Also I don’t exercise at all as I’m too tired in the evening and can’t motivate myself to do anything.
So has anyone advice on where to begin?????

Sorry to hear about your diet issues, am not in a position to help I'm afraid but I was just wondering....I don't think Crohn's is curable, you have it forever as far as I know,my OH has it for just over a year, please someone correct me if I'm wrong, do they consider it cured if you have surgery?

The_Conductor

OH wit Crohns wrote: »

Sorry to hear about your diet issues, am not in a position to help I'm afraid but I was just wondering....I don't think Crohn's is curable, you have it forever as far as I know,my OH has it for just over a year, please someone correct me if I'm wrong, do they consider it cured if you have surgery?

One of the big differences between Ulcerative Colitis and Crohn's is that UC only occurs in the large intestine, and if the large intestine is surgically removed- you are cured of UC. Crohn's unfortunately can occur anywhere at all in the gastrointestinal tract, and surgery is a tool for alleviating the worst sympthoms. You can get long periods before recurrence (several years), and in best possible scenarios- it may possibly never recur to the same extent as previously- but what tends to happen- is a recurrence where the gastrointestinal walls are rejoined together (although- it can pop up again literally anywhere from the mouth to the anus).

Crohn's Disease is *not* curable by surgery- surgery is a management technique for alleviating the very worst case symptoms.

The_Conductor

Choice One wrote: »

Hi All,
Bit of a long post..........
Have decided that its time for me to start eating properly and am just looking for any advice you may have…..
Just a bit of background, when I was 17 I was diagnosed with Crohns disease which is now about 12years ago.It was eventually treated by surgery and although I was cured of crohns is still suffer from stomach cramps,diarohha,tiredness etc…..

Choice One- first off- we're not allowed offer medical advice in this forum. However, I would urge you to make an appointment to see a gastrointestinal consultant at your earliest opportunity- as what you are describing are some of the symptoms of active Crohns. Further- contrary to the information you appear to have been given- Crohn's is an incurable autoimmune disease that can recur at any time- surgery is simply a management tool (of last resort).

So anyway I was always a fussy eater and now my condition does `t help as certain foods can disagree with me such as some fruit and veg.But being a fussy eater I didn’t eat veg anyway.I don`t take any medication although I should be getting b12 injections, just some multivitians. Heres basically what I eat:

Vitamin B12 plays a vital role, you *need* to get an immediate appointment with a Crohn's specialist, and organise an assessment of where you are at.

With respect of not eating fruit and veg- unfortunately its not unusual for fruit and veg to be lacking in a modern diet. You need to get your core underlying medical condition properly assessed though- before mulling over the sins of eating or not eating fruit and veg. I would also suggest making an appointment to see a dietician/nutritionalist recommended by a gastrointestinal consultant, they will be in a better position to explain to you the sort of diet that might be appropriate to you at this point in time.

Note- there is not a one size fits all diet for Crohns- and indeed- your diet can vary vastly depending on how you feel almost on a day to day basis. You need to be able to recognise this.

At present you need to have your Crohn's assessed- an evaluation of where you should be with your diet can follow as a part of this process.

BREAKFAST
Tea and toast
Tea \ toast and cereal (at weekends )

Tea and couple of biscuits and 11am

Carbs (cereal is polluted with processed sugars too- unless you go for mueslis and even then you have to be careful. A better idea would be porridge. You might have probs with fibre- but there is no protein there at all either. If you are eating lots of carbs- try to make them complex carbs.

LUNCH
Crisps and bar of chocolate or
Sausage sandwich or sometimes I skip it all together

Tea and couple of biscuits and 3 pm

Bad idea skipping lunch- but you really need to get the fats down and protein in. How about substituting the sausage sandwich for a ham or cheese sandwich, and instead of crisps- something thats easy to digest, but more nutritionally useful- such as a banana or something?

DINNER
Chicken fillet, roast potatoes and gravy
Chops roast potatoes and gravy
Mince roast potatoes and gravy
Steak roast potatoes and gravy
With glass of 7UP followed by tea and couple of biscuits

I’d pick at food for the evening such as crisps\biscuits\peanuts
[/QUOTE

To be honest- the gravy would have me in trouble in no time flat- but different people have different trigger foods. Obviously you need to explore a more appropriate diet with a dietician. Until such time as you have your appointment- perhaps try experimenting a little?

WEEKENDS
Take always , bottle of wine or cans of bulmers

Generally have tea \toast and cereal before bed.

You really need to look at this. Even if you didn't have Crohn's- constantly eating take aways and alcohol- and backing it up with simple carbs- is a bad diet for anyone- totally ignoring your underlying medical condition. You *need* to see a dietician who is recommended by a gastrointestinal consultant.

Looking at it now I realise how bad my diet is! By the way I take tow sugars in my tea!
I`m not a food person, it is just a means to en end for me, I do occasionally eat pasta or rice, I just find them really bland as I don’t like the sauces with them so eat them on their own. Also I don’t exercise at all as I’m too tired in the evening and can’t motivate myself to do anything.
So has anyone advice on where to begin?????

Bland foods, despite being unexciting, can make life bearable at times.
I know how difficult it can be to exercise- when you're feeling so run down- you do need to bring all this up with a consultant though. Personally I find some simple exercises such as long walks and swimming helpful- and to be perfectly honest- once you do a little exercise- it actually gives you the energy to do a little more.

Motivation is a big factor- and when you're in a rut- you need to figure how to get out of it.

Please, please, book an immediate appointment with a gastrointestinal consultant- you need an assessment.

Sabre0001

Well it's been a while but after a flare-up I was scheduled to go for another scope. Even the memories of 'Klean-Prep' made me shudder and it lived up to that image. Nearly made me physically sick but I soldiered on (may or may not be a good tip but I found it more bearable to take a drink or two and then swish my mouth with very diluted lime juice).

Scope revealed an inflammation so I'm back on plenty of steroids. Most worryingly though is that they are now relooking at the prospect of it being Crohns. Perhaps I won't be able to post in this thread again Just under a week to find out the results of the biopsy. Just getting back to my regular self now (somewhat).

The_Conductor

In Vincents they seem to have stopped using Kleenprep altogether in favour of Picolax. The ersatz 'orange' flavour is nauseating, but at least its more drinkable than the Kleenprep........

lip

Hi.Oh God,even the word kleenprep makes me gag.I'll be getting my EUA in 2 weeks,not sure if I'll need to drink that.Have to go for pre assessment next week,so I'll know then.I had picolax before,and yeah,its definately easier,still not nice though.
Entocort seems to be working well for me,only have bad pain every couple of days now,but appetite still not great.Started reducing today,so hopefully it doesn't go back to the way it was.

Papillon!

gosh i wish all you people suffering with crohns at the mo good health in the future
i have crohns since i was seven but wasnt diagnosed til i was about 9 or 10 and spent a lot of time in a out of hospital on several different medications

thankfully when i was about 14 one worked for me which i dont even know the name of cos my mum took care of all that for me since i was so young. if any1 wants the name of this i can find out and you could ask your GP. im 19 now and thankfully in good health. really nervous in case it comes back though cos its kind of inevitable but praying i stay well
so thankful for the last few years

good luck everyone

cee_jay

lip wrote: »

Hi.Oh God,even the word kleenprep makes me gag.I'll be getting my EUA in 2 weeks,not sure if I'll need to drink that.Have to go for pre assessment next week,so I'll know then.I had picolax before,and yeah,its definately easier,still not nice though.
Entocort seems to be working well for me,only have bad pain every couple of days now,but appetite still not great.Started reducing today,so hopefully it doesn't go back to the way it was.

Trying to stomach and keep down kleen prep as I type. Only on my first 250ml (have 4 litres of the stuff to drink), and am already gagging with the taste. Anyone any tips on how to stomach the stuff and get it all drank?
Have a colonoscopy tomorrow morning at 9:30 - hoping they can finally give me answers as to what is wrong after it. Crohn's has been mentioned but they don't think it is at the same time.

The_Conductor

4 litres????? Fecking hell!!!
I've Picolax to take here- its 2 glasses- one in the morning and one in the afternoon.
4 litres is a totally unreal amount.

You're really going to have to just take your time and slowly drink it- until you've managed to get through it. 4 litres is a bit ridiculous though.......

cee_jay

Yeah been reading about Picolax on the web this morning - seems much easier and hassle free than this Klean Prep.
I have to aim to drink 250ml every 10-15 minutes. Took me 35 mins to drink the first glass, here looking at the second glass trying to get the courage to taste it again. Tried rinsing my mouth with mouth wash to dilute the taste before drinking it, have got a drop of cordial in this glass to see if it helps.
The instructions say I should aim to have the 4 litres drank by 8pm tonight - can see me still struggling at midnight at this rate Just need to start knocking it back now I think.

LegacyUser

klean prep is absolutely awful have had to do it 4 times this year and i nearly get sick even drinking disprin!!first time i was drinking it till midnight. next time i mixed it with blackcurrant mi wadi or whatever cordial u can get and it makes it much more bearable!!hope that helps!!

cee_jay

Thanks - still here, still drinking it. Only just finishing my 2nd litre, and still no movement (sorry to be so graphic) - so don't know what the story is. Am mixing it with Orange cordial and washing every mouthful down with sprite. If nothing happens I really don't know what the story will be in the morning - am dreading it now.
The weird thing is my cousin has been admitted to hospital in London, suspected appendicitis yesterday, today it looks like Crohn's disease, so she is drinking it at the moment to in preparation for tomorrow's colonoscopy. She is having as much difficulty as me by the sounds of it.

The_Conductor

Best of luck Carol- let us know how it goes.

cee_jay

smccarrick wrote: »

Best of luck Carol- let us know how it goes.

Thanks for that.

It was actually ok in the end - don't remember a thing. Got sick from the sedation when I came around but its not Crohn's anyway which going for the stories on this thread I have to be extremely grateful for. He has taken a biopsy to check for colitis, so will be going back in another few weeks.

Told them straight out I couldn't drink the stuff and they didn't seem too surprised.

Sleep time now

lip

cAROL,you poor thing having to drink that.I found knocking it back was the easiest,taking 10-15 minutes between each glass.but everyones different.I knock back barium too,get it over with as quick as possible.When I was in hospital years back,I couldn't even keep water down and they expected me to drink all that.Think I got 2 litres down and it done the trick.Not suggesting that anyone not drink the whole lot,it was probably enough for me at the time cos I wasn't eating.Good luck with your results.

Rimbaud

I was diagnosed last June with Indifinate Colitis - but going on my current condition i got - im having a baaad time with bleeding from what i think was my bowel initially, then in the middle of that a flu, and now stomach bleeding - its Crohns morelikely
Pale, weak, really sore knees/joints, bleeding after eating - can't really eat well at all.

Doctor closed the weekend
Good idea to go to casualty if the bleeding keeps up??
Its been 3/4 weeks now.Doctor gave me pentasa last week.calmed for a day or two and then got bad again with headaches(from bloodloss i presume)

Feeling sick as s*&t
Can't travel home at the moment, just staying in my rented accom waiting to get better.

Damn straight it should be on the long term illness list - its got me broke from meds/doctors.
Its affecting my job too - cant do much some days just sleep it out if i can sleep.