Crohn's Disease

n1ck · 15-12-2008 12:59am

Dan133269 wrote: »

you've the right attitude alright but it'll probably slow you down for a bit sooner or later, good to hear it's mild though. I'm on the first type of steroids as well.

Funnily enough now that I remember it, was in america for the summer, and they had this ad on telly looking for donations i think for some medical research thing to do with crohn's disease, and in typical american fashion they made the whole ad like a sob story for terminally ill people, they honestly gave the impression to the layperson watching it that crohn's disease ended in death of the sufferer in the majority of cases. Says a lot about a society that they could release such stuff.

I've had it ages, was quite a pain in the arse for a few years but actually only got off my arse and got diagnosed with it there last month. To be really honest, i haven't felt as good as i do now in a LONG time, going out meeting new people cause i don't have this crap baring down on me anymore, i know what it is and the medication is doing its thing so i'm out enjoying life!

It is a pain but if you can get past that it's grand really, at least in my case.

Colmm23 · 16-12-2008 5:15pm

Woohoo,

Just been at the clinic today and I'm off that bloody elemental diet after 7 weeks. What a lift to spirits:D:D:D
Taken off the anti biotics as well.
Was also stopped by the guards on the way home for an out of date insurance disc and he just told me to get it sorted, good day all round really.

The_Conductor · 16-12-2008 8:35pm

Nice one Colmm23- long may it stay that way. I love when you have days like that!

MORISH · 18-12-2008 1:35am

Colmm23 wrote: »

Woohoo,

Just been at the clinic today and I'm off that bloody elemental diet after 7 weeks. What a lift to spirits:D:D:D
Taken off the anti biotics as well.
Was also stopped by the guards on the way home for an out of date insurance disc and he just told me to get it sorted, good day all round really.

I'm so happy for you getting off the elimential diet it's no joke, i hated every drink of it!! just in time for christmas too. I hope you enjoy the silly season, and try a drink or two, personally beer is a no no for me but whisky is my choice that doesn't seem to bother my chrons, JD is great!! and what you've been through it sounds like you could do with one.:D

LegacyUser · 18-12-2008 10:04pm

Hi everybody

A few of us people that suffer with Crohns disease that have started up a group on Facebook called Crohns Ireland,

We plan for this to be a meeting point for people with Crohns to discuss everything from operations, medications, lifestyles and diet etc

hope to see you there, follow like before and join

allan

http://www.facebook.com/topic.php?topic=6904&post=34431&uid=106491930028#/group.php?gid=106491930028

Colmm23 · 22-12-2008 11:07am

MORISH wrote: »

I'm so happy for you getting off the elimential diet it's no joke, i hated every drink of it!! just in time for christmas too. I hope you enjoy the silly season, and try a drink or two, personally beer is a no no for me but whisky is my choice that doesn't seem to bother my chrons, JD is great!! and what you've been through it sounds like you could do with one.:D

I tried a couple of beer shandys over the weekend and so far all still feels fine but I'm just wondering does it affect you straight away or take a few days? Whats your experience Morish?

The_Conductor · 22-12-2008 11:21am

Colmm23 wrote: »

I tried a couple of beer shandys over the weekend and so far all still feels fine but I'm just wondering does it affect you straight away or take a few days? Whats your experience Morish?

To be quite honest- if you're just off the elemental diet- you really shouldn't be going anywhere near beer shandies at all. Alcohol effects different people in different ways- but if my Crohn's is active, it can take a day or two for the effects to kick in........

colsers22 · 23-12-2008 3:02pm

Hi guys, My name is Colin. I haven't posted here before, I didn't realise this forum existed and I'm delighted to have heard about it.
I found out about this through the Crohn's manifesto for young people forum, which I was supposed to attend recently, but unfortunately couldn't.

I just want to share my experience in case people might find it useful
I first presented symptoms in 2003 (22 years old). I had severe diarrhoea along with frequent vomiting. This was the first thing I noticed.
Later I had started to lose a lot of weight, couldn't face food and had torturous abdominal cramping. I had also started to get really stiff and sore joints. It felt like I was getting arthritis.

I let this go on for a while before I did anything about it. I was up to 9 or 10 episodes a day before I finally plucked up the courage to discuss with my friends and parents and to see my GP at home in Mullingar. I was so scared as I had never had problems like this before. People didn't know what to make of it all and thought I had an eating disorder or something.

My GP did many tests, bloods, stools sent to labs etc. She really didn't know what was wrong with me and didn't feel qualified to give treatment.
She had suggested Colitis (My Aunt has UC for many years). I was then sent to Mullingar General Hosp for further tests.
I was put under the care of a surgeon who was not a gastroenterologist

I met with the surgeon in Mullingar and he arranged a number of tests on an out-patient basis.
The first test was colonoscopy. To prepare for this, I had to take kleen prep, which is quite difficult when the slightest intake of food is making you vomit.
I tried to take as much as I could, and went in for the test.
My Dad had to carry me into the hospital that day and we were all very scared.
I really feel I should have been admitted in Mullingar that day. It was obvious I was very ill and very weak.
I was sedated and given the test and sent home a few hours later.

My test results indicated inflammation of the bowel. I had to have a second colonoscopy for further examination and to have biopsies. I only given a child's dose of sedative as I was "too weak" and I felt and could see on the TV screen everything. It was the most painful and uncomfortable thing I've ever experienced.
I had a barium follow through a couple of days later which was also unpleasant.
After all my results were collated, the surgeon diagnosed me with Crohn's. Fortunately, my small intestine was unaffected. The inflammation in the large intestine was affecting a few areas, so this is why I was diagnosed with Crohn's and not Colitis.
I am still not 100% convinced I have Crohn's to be honest, but that’s for another day..

I attended the surgeon's clinic for a few weeks, still on no medication.
The surgeon decided to put me on Asacol, nothing changed and my condition if anything worsened.
I was then put on steroids (pred) and which I responded to immediately. Had I not been put on steroids I think I might have faded away to nothing.
I remained on steroids on and off for a year, along with Asacol.
Every time I came off the steroids my symptoms would return, so my surgeon decided I needed to have the inflamed part of my colon removed.

I refused the surgery and got my GP to refer me to a Dublin specialist. I was so disappointed with how I had been treated and was also very worried about my long term outlook with all the steroids.
There's a history of osteoporosis in my family.

The more I learned about my disease, the more confident I became that the treatment I was getting was totally inept.

Anyway, I attended the Mater GI unit. They were excellent. They changed my meds to Imuran and Salazopyrin. This seemed to do the trick. All my joint problems went away and my other symptoms subsided.

Over 5 years later I am in remission and feeling healthier and happier than ever.
It really pays to be with doctors who know the disease and know what they are doing.

Happy Christmas to you all, and a healthy new year :-)

Regards,

Colin

MORISH · 29-12-2008 3:55pm

MORISH wrote: »

I'm so happy for you getting off the elimential diet it's no joke, i hated every drink of it!! just in time for christmas too. I hope you enjoy the silly season, and try a drink or two, personally beer is a no no for me but whisky is my choice that doesn't seem to bother my chrons, JD is great!! and what you've been through it sounds like you could do with one.:D

Hey!! Hope your all well and had a good christmas,

Colmm123 to answer your question about alcohol, its different for everyone, i do drink and sometimes it can effect me the next day but only in a very minor way and to be honest if i'v indulged that much my chrons is the last thing i'm aware of. I dont think a few shandys can hurt although as i said i cant take beer in any form cos thats what really upsets my chrons, you might find that its too early after you'v been sick to be taking alcohol and might have a set back for a few days but just wait till your better. If it helps i'm only recovering from my flar up and i drank over the christmas too, life is for living and i try not to let my chron's stop me from enjoying life.

ladybirdirl · 31-12-2008 9:41pm

Colmm23 wrote: »

Thanks S.

My fear of going back eating again is that this bloody fistula will open up again. Am I fretting over nothing or do I actually need to be carefull.
I'll tell you one thing its a tough time of the year to be not eating, but at least I've no fear of been poisoned by the pigs

colm

Hey Colmm23,

Was just reading your post re Crohn's....hang in there!! Brought back memories for me I can tell you,I finally got diagnosed in 07 after 2 years of being told I was depressed with IBS!!! Currently on IMURAN which seems to be working a dream

1 thing I wanted to pick up on was the fear of eating... I had that after my first episode. Just take it day by day.If you're still in a flare up then all the dietiticians will tell you to eat whatever you think you can stomach,believe me the weight will come back. I lost nearly 3 stone first time, then got put on steroids, your weight will yo yo. BE thankful for the good days & do post on here.

I've found the guys on here fantastic

LB

Colmm23 · 02-01-2009 2:55am

Hey guys,

Happy new year to all and hope yee all had a good christmas, I know I did. Had the turkey and trimmings and it caused no problems, either did any of the other grub I ate. Didn't go over board eating but feel so relieved that what I did eat was trouble free. Had a few more beers as well and no problems at all either. I can notice the weight increasing too.:D

I really have a new lease of life after what I went through for the last six months, it feels great.

Ladybird I have to agree with you the people on here are fantastic for giving that lift when your a little low.

ladybirdirl · 09-01-2009 6:07pm

Hey Colmm23,colsers,norish et al

How are you doing now?

I must admit I am totally fed up today. I got put on Imuran which I thought was working a dream...got bloods done today, B12 is still awful, white cells are down & inflammatory markers are up far too high:( I'm hoping he'll leave me on the Imuran for a while longer, I know it's only been a month but I sooo need this to work

LB

PS I do realise some people have it a lot worse than me but I'm just having a moan..

Colmm23 · 10-01-2009 12:04am

Hey Ladybird,

I'm feeling fine now appetite is well and truly back. When I eat a dinner I feel like eating another one an hour later. Weight is increasing, starting to grow out of the small jeans I bought a few months ago. Still know there is something wrong inside all the same but I'm on the mend I'd say.
Have a check up next tuesday so hopefully everything will go well, I think I'll be started on some other medication inflixamab or whats the other one called??
Anyway chin up, if I can see improvement in myself after the crap I've gone through in last six months anyone can get through it. I bet there's a few more people that can say the same about themselves.

I'll let you know how I get on tuesday.

watsgone · 15-01-2009 4:29pm

Hi,

I am on humira working grand at the moment. Have the bad odd day but who doesnt.
Maybe I am on my own on this, while crohns has brought me to increbily painful and lonely situations I think all I see here is a lot of bravery and strenght in people.
I try not to allow myself to be be held to randsom, afraid of my own body okay sometimes I am plain stupid when I should rest.
Does anyone think it makes them want to prove to thems that yes we can do that do something

watsgone

ladybirdirl · 15-01-2009 9:41pm

watsgone wrote: »

Hi,

Maybe I am on my own on this, while crohns has brought me to increbily painful and lonely situations I think all I see here is a lot of bravery and strenght in people.
I try not to allow myself to be be held to randsom, afraid of my own body okay sometimes I am plain stupid when I should rest.
Does anyone think it makes them want to prove to thems that yes we can do that do something

watsgone

Couldn't agree more well said:)

I do think it also allows us humour about your own body, how many people get embarassed around dodgy tummies....when you've had as many colonoscopy procedures as you need to diagnose Crohn's that embarassment is gone!!

Lb

nerdysal · 19-02-2009 4:39pm

I totally agree with you there. I honestly believe that I wouldn't have got as good a leaving cert as I did if I hadn't got crohn's disease. It prevented me from doing other things like sports so I focused more on studying... it has given me sheer determination!

waterford1988 · 22-02-2009 4:16pm

I was diagnosed with chrons when in 2003 when I was 15 years of age, a few weeks before my junior cert. For years I have never let it hold me back, I always played sports escpecially hurling to a very high level. However I was always very secretive about my condition. My parents were the only ones who knew.
Recently I've been very down, I'm depressed all the time. I'm in college away from home and this is not helping. I opened up to my best friend recently about having the condition and it has helped but I'm still very down. I have felt like this since about october. Also recently I have been dumped by my girlfriend and the crohn's has been flaring up. Consultant is thinking of putting me on remicide.
Does anyone else feel this down about haveing this f***er of a disease? I really feel like giving up.

E.T. · 22-02-2009 7:52pm

I've gotten very down at times when I'm having a flare - I suppose feeling like crap isn't exactly going to make you feel very cheerful. It is depressing, especially if it's interfering with your day to day life, and with your social life. It's hard when you're young and your friends are heading out for drinks or dinner - if I'm sick I still want to go out, but end up in bed instead. I do find that once I'm feeling a bit better my mood starts to get better too though. Exercise really helps me (if I'm able for it) - I lay in bed til 2 today cos I felt so crappy then I made myself go to the gym and I felt way better for a while.

Letting other friends know could help too. I told my friends and close work-mates when I was diagnosed - they all knew I had something wrong because I was always sick anyway! If people know it makes things easier because you don't have to make excuses for feeling tired/crappy/running to the bathroom! Good luck and hope you feel better soon.

waterford1988 · 22-02-2009 8:42pm

As well as the flare up in my intestine, I have been suffering ffrom bouts of arthritis in my joints, which is curtailing the sport I can play. Sport is the one thing positive in my life.
I don't think I want to open up to other people regarding my condition as I don't want them looking differently at me. I was so positive for such a long time but I feel like this has been emotionally beaten out of me!
I was recently told that I need to reconsider my choice of career as a result of my condition. I am currently studying civil engineering andI have been told now that I will most likely not be healthy enough to work as an engineer on sites ect. I just don't know what to do!
Then on top of all this I got dumped by a girl I was really into a few weeks ago.
Is anyone else in a similar situation?

LuckyLloyd · 23-02-2009 11:05pm

Hiya man,

I think a lot of people will read your two posts and be able to empathize an awful lot with your predicament. I was diagnosed in Jan 2007, a couple of years after I finished college. I had suffered all the way from 5th year in school but was misdiagnosed / didn't really push hard enough to find answers for what was wrong with me. I remember feeling the same way about my condition and how I related to others - not wanting to tell people because I didn't want to be a 'victim' or to be treated or viewed any differently by my friends / colleagues.

I can only speak from my own experience (and if you read through this thread one of the things that stand out is the fact that everyone's experience with Crohn's is unique) of course, but I found it so much easier to get on with life when I simply allowed myself to accept the limiting nature of the condition. Stop worrying about things you can't do, and try to really enjoy those you can.

I have always found that things tend to snowball when dealing with Crohn's. Getting dumped is difficult for anyone to deal with, add in the stress of worrying about long term career plans (judging by your age I'd guess that you are maybe in final year in college?) on top of daily pressures and symptoms will intensify. E.T. is dead right when they say that flare ups make everything in your life seem worse.

I can only advise that letting your close friends know that you aren't very well and that if you sometimes fail to make a night out / seem a little off it's because of the condition will help. I know it's hard to do this, but when you keep this stuff bottled up and internalized it only serves to make you feel more isolated and depressed when you are experiencing symptoms. Being able to say to a mate that 'can't do that today, I'm not feeling great' and to know that they know has always helped me psychologically. For me, it's always made things seem less hopeless, less disastrous. Open up to the people you love, who love you. No - one should have to wage a battle against this all on their own.

Secondly, I would urge you to use your consultant as much as you can and be willing to try whatever treatments they suggest. Again, if you read through this thread you can see that many people have had a few things fail them before something works and they gain some longterm relief. Remember that if you miss a couple of months of this season, or end up dropping down a level it doesn't mean that you won't be able to get back playing later on in the summer or come back at full tilt next year.

Finally, keep trying. I know it is easy for me to type that, but I have been there - in agony for days on end not knowing when I'll get a break and feeling stressed about all the things I am unable to do when feeling ill. If you keep plugging away things will get better, and you'll reach a balance with life that works for you.

I sincerely hope things look a little brighter for you. Best of luck,

Lloyd.

LegacyUser · 24-02-2009 2:33am

Thanks man, If you dont mind me asking you what do you work as and what type of career would suit someone with the conditon? Im actually only in first year as I took a year out last year and did nothing...actually turned out to be the healthiest year since I have been diagnosed prob due to me for once not putting myself under stress.
Finding it very hard to be away from home at the moment, I'm considering starting a course in WIT and living at home next year.
My Consultant is talking about putting me on remicide. Anyone have any personal experience on this drug?

LuckyLloyd · 25-02-2009 12:54am

Unregistered wrote: »

Thanks man, If you dont mind me asking you what do you work as and what type of career would suit someone with the conditon? Im actually only in first year as I took a year out last year and did nothing...actually turned out to be the healthiest year since I have been diagnosed prob due to me for once not putting myself under stress.
Finding it very hard to be away from home at the moment, I'm considering starting a course in WIT and living at home next year.
My Consultant is talking about putting me on remicide. Anyone have any personal experience on this drug?

Well, I did an Arts degree in college and then fell into working as a VAT Consultant for just short of three years after I finished. As I said above, I wasn't diagnosed when I was in college but obviously suffered symptoms at the time. I got lucky in being able to get accommodation right beside UCD during my final year and a job on campus which meant that everything was within walking distance. That made things easier, cause if I ever felt unwell I was never too far from my base.

My job was office based, so sitting down in front of a computer. I moved back into my parents house when I finished college and was fortunate that my employer was based a 10 minute walk away from there. Again, this made things all the more manageable for me.

I don't doubt that a desk job is more realistic when you are suffering with this condition. I mean, I was able to show up for work (most of the time) during flare ups, and just suck it up. But at the end of the day, when you are experiencing horrendous stomach cramps / obstruction your performance in anything you do is going to be adversely affected. It's going to be extremely difficult for anyone to be focused on the vast majority of mental or physical tasks in such a state - unless they have an unbelievable threshold for pain or cast iron will. Or both.

So, when suffering flare ups I would show up for work - but my performance was poor on such days, and I would invariably clock in and clock out for the minimum eight hours. Of course, there are few jobs that will pay good money to employees who show up as little as they have to and do sub standard work when they are there. As such, I had to force myself to put in the extra effort on days I was symptom free.

Through work and a couple of other things, I managed to put a decent amount of money together and was able to quit last April. Rested up for a few weeks and then did a bit of traveling. Like yourself on your year break, I have felt as good as I can remember over the past 10 months with the pressure of work and the daily grind removed. I think it helps aswell when you can properly rest up and take care of yourself during a flare up - and not be worrying about how that lost time is going to effect things in your study / work life.

So, on the whole, I have been lucky in a few respects - and those breaks have helped me to make a fist of the condition. The path I've gone down over the past few years has allowed me to function with Crohn's. And that is probably what you need to keep in mind with the decisions you make over the next few years.

Living at home and having a short commute into WIT may not be a bad idea. Having the support structure of your family and the comfort and familiarity of your parent's house as a base could be a huge help for you as you take on the challenge of a multi year degree. Of course, living at home has it's drawbacks (:rolleyes:) but anything that increases the chances of you feeling better for longer periods of a week should be weighted heavily in your decision making process.

I would also say that if you are still at a stage where you get to choose the course you are going to attempt over the next few years, try not to be worrying so much about the potential career at the other end just yet. Try to pick a course you have an interest in, at a college where you can work out a good living situation. That should reduce to a certain extent your weekly stress levels - which should in turn make everything else a bit easier. If you can get a good support system around you and work yourself into a situation you feel comfortable in - you will be able to get through a degree course. And once you've done that, you'll know that there's nothing that is beyond you.

You can't know right now how you will be affected by Crohn's in three or four years time (i.e. when you are ready to get into the fulltime employment mixer), so maybe your focus should be centered more on the short and medium term.

Finally, I have never been on Remicade, so can't give you any detailed commentary on it. I'd say there is no harm in reading up on it, figuring out the questions you have on it, and then asking your consultant for more indepth information on why he thinks it might work / potential side effects while you are on it. Again, as I said earlier, there isn't one cure all. But a lot of people who are willing to be brave and try a couple of different treatments have eventually been rewarded with some long term relief. What have you got to lose?

I hope my ramblings are of some help. Just remember that even if you don't get to control when you feel ill - you have the power to decide a lot of other stuff for yourself. Think about your options. Work out a few potential plans for yourself. And then talk it over with family, friends - even your consultant. Hopefully then you will be able to get yourself into a living situation that works for you.

Again, I wish you the very best of luck with everything,

Lloyd.

silversurfer · 25-02-2009 1:16am

I've been on Remicade in the past, I must say I found it excellent, really got things under control for myself.
The only thing is the remicade has mouse proteins in it and this seems to result in a small percentage of people getting reactions to the treatment.
I unfortunately was one of these few and have finally been put on Humira, which for me is not the magical treatment the remacide was.

methotrexate or imuran or something similar is usually taken alongside the remacide and humira (i.e. I'm on methotrexate tablets every week at home).

Here's how the remicade goes:
Remicade infusions are done in the Hospital, these take about two hours for the actual infusion and lots of waiting around, bring a book or laptop and catch up with something you've been putting off.

You normally get one infusion every two months.

I started these in Feb 07

Brfore the Remicade infusions are done they need to do a Manuoux test, this was done a few weeks before the remicade, to check for TB.
This is where they inject a small solution under the skin of the arm (and mark it)
only takes a few minutes and three days later, at the same time of day, the specialist/ doctor checks the location on the arm to see how big the reaction to the solution is.
I've since found out that the Mantoux is normally checked every few hours or something like that.

The 1st the Remacide Infusion
Arrived in the hospital at 09:00
Checked in (with a book to read) and waited
10:30 doctor placed needle in arm (one of the things they place for attaching a drip later)
11:30 Went for chest x-ray, if this not clear they will not give the infusion.
12:00 Lunch Provided, quite nice actually
Saw specialist and given information on things to watch out for during infusion.
15:30 finally got all-clear from x-ray
Remacide infusion started
5mg of Remacide per Kg of weight (I'm 80kg)
400mg total and some saline, all in a small drip bag
Doctor flushed vein (through previously placed needle thing) with a small syringe of saline solution to make sure the vein was ok.
Then the drip was attached.
Two and 1/2 hours later the infusion was finished (fell asleep for a hour), no side effects noted except for a headache and had my tea near the end of the infusion.
Monitored for another hour and went home on the bus, as you're not allowed to drive afterwards.

Here's how the humira goes:
Before starting Humira you need to have no chest infections and have had a Mantoux test.
I've had the mantoux and my chest is clear, so off we go.

The 1st the Humira injections are completed in the hospital, in case you have any problems.
And I have to get the injections from the chemist, using a form from the specialist.
So I've already read up on the Humira injections and had asked for the 'Pens', as these are an automatic dispense pen and easier than an injection. Medicine is kept in the door of the fridge at home, between 2 and 8 degC?

Arrived in the hospital at 09:00, and back out by 12:30
Checked in (with a book to read, I always take a book) and waited
A humira rep arrived and go's through the humira and gives a nice big folder with loads of info to take home.
The nurse demonstrates the use of the 'Pen', with a fake one she has.
and proceedes to show me how to inject my stomach. It's quite easy and not very sore.
I've 4 injections to get, and I do the last two.

I've to wait for two weeks to get the next two injections and then every two weeks it'll be 1 injection.
Your local doc can give these if you're not looking forward to this.

Have fun
s

ladybirdirl · 27-02-2009 7:18pm

Hi there Waterford1988,

Just wanted to emptahise with you re your flare up.. the arthritic type pains are probably related to the flare up(they are for me anyway) & when that subsides the pain will too.

For me, I try to manage it by doing alternative therapies like reflexology & massage & that & am also on Imuran & Entocort steroids. I'm also trying a food combining diet

Anyway, the main thing I wanted to say was perhaps look at changing your course,especially if you're in first year. The reason I say this is.. I wasn't diagnosed until I was working but I had done computer science.

I work for a good employer & can work from home for a bit if I have a flare up. Now you don't have to do the real techy degree if that's not what you're into but you could do business or something

Hang in there, I know it's rotten but I think lucky lloyd said it right when he was saying that stressing tends to make it worse( I'm paraphrasing there;))

Good luck, if I can be of any more help please post/pm

LB

Rocky7 · 04-03-2009 10:41pm

A friend of mine suffers from Chrons. He followed a REALLY restricted diet for a long time and then gradually started to reintroduce things. He's really healthy now fro the past year and a half - touch wood!

lip · 18-03-2009 11:20pm

Hi.Haven't posted on this thread before but just wanted to ask a question.First I'll give short version of background.33 yrs old,diagnosed with Fistulising Crohns 15 yrs ago.Had large bowel removed and fistula closed 10 yrs ago.Having flare up at the moment and after being taken off pentasa,imuran and remicade I am now on Humira.Also been on and off steroids.Had Dexa scan for bone density last week,was told today I now have osteopenia.Has anyone else been diagnosed with this.I was in so much shock that I didn't ask any questions.I am not allowed to eat food with fibre,no fruit or veg and dairy kills me too.Anyone know of good exercises to build up bone density?Appreciate any feedback.Thanks.

silversurfer · 19-03-2009 12:15pm

I had a bone density scan and was confirmed with Osteopenia a few years ago, due to all the steroids (in one 52 week period, 1 year, I was on the steroids for over 36 weeks). Steroids leach calcium from the bones.

[Osteopenia is the term used for bones that have become somewhat less dense than normal, but not as severe as in osteoporosis.
A person with osteopenia is at risk for getting osteoporosis in later life].

So I was put on Osteofos D3 sachets (Calcium and Vit D3 supplements) and a once weekly
Foxamax Calicum absorber to help with the bones.
These days I take Ideos chewable tablets (Calcium and Vit D3) daily and the fosamax weekly.

High impact excercise like walking and jogging are supposed to be very good.
Cycling is not supposed to be much use.

kildareash · 19-03-2009 1:12pm

Hi all,
I've read alot of posts in this thread.
About year and a half ago, OH was diagnosed with colitis about a year and a half ago.
He seemed to be doing well, until last September.
He got a throat infection and it just snowballed from there.
I ended up bringing him into casualty one night, because the symptoms were so severe.
He spent eight weeks in hospital over the next three months.
Apparently, he was the sickest person in the hospital at one stage, and the doc told us that at one stage they were fighting for his life, not just to save his colon.
We've been told that he could still need to have his colon (or part of it)removed within the next year.
When he came out of hospital, he was on a strict diet...no fruit/veg, brown bread etc.
He's been doing well ever since, things "normalised".
He attended an out-patients appointment at the end of Jan, and they were happy, blood test all came back clear.
Two weeks ago, he attended dietician who told him he could start introducing fruit and veg back into this diet.

To me this seems a bit too soon, considering how sick he was, but I'm not an expert.

I know, since he's been feeling well he has been cheating a little bit, with no side effects. But for the last two weeks, he's had the symptoms of a flare up.
I'm trying to persuade him to go back to the diet he was on when he came out of hospital, and he does while I'm there but then he was working late last nite and had a chicken burger for his tea.

I'm so frustrated, we're about to move into our first house together and he's saying he might have to go back into hospital.
I know, I don't know or probably understand the full extent of what you go through during a flare up. And some of the things he went through in hospital were so humiliating, but he got through them and came out all the stronger on the other side.

Basically, I want some advice on what I can do to make him eat properly again, and not be lazy about his food.
How do ye cope with the strict diet?

Every time we talk about it, it almost ends up in an argument, I feel so bad about stressing him out and give in!

Any advice would be really appreciated
(sorry for long post)

The_Conductor · 19-03-2009 1:37pm

To be honest- when you have a flareup, your diet becomes so restricted, that once you do have the ability to eat again, it is very very hard to not sometimes allow yourself to eat things- even though you know you will pay for it in a days time (or whenever).

There are lots of very tasty things you can eat- that should be fine- you can be really inventive with herbs and even a touch of some spices can make a massive difference to some dishes.

Instead of arguing over it- I'd suggest perhaps enrolling both of yourselves on a cookery course- you might be very pleasantly surprised.

When you are having a flareup- it is diffferent for everyone- but the constant pain, lack of sleep, and general lack of any energy whatsoever- can be not just demotivating- but can be very depressing. It can reach the stage where you don't even have the energy to sit and watch tv- you just want to curl up and try to minimise the pain by doing whatever you can. It is different for everyone- and is very difficult to try to impart what you're going through- but to be honest arguing about what he can or cannot eat, shouldn't really enter the equation.

It might be helpful for your other half to sit down and chat with other people in a similar position- if he hasn't already done so- I'd suggest joining the Irish Society for Ulcerative Colitis and Crohns.......

It is difficult- and sometimes the most difficult thing of all, is that those who are near and dear to us do not understand what we are going through.

Kind regards,

Shane

kildareash · 19-03-2009 2:04pm

Thanks Shane,

I do try and avoid arguing with him over food, beacuse it only make matters worse.
But sometimes I get so frustrated by him.
I know I don't understand or know the full extent of what he's going through, and I wouldn't pretend to ever know.

He also says, not being able to have a few drinks is nothing. He will quiet happily stay out all night drinking water, and drive us drunken fools home at the end of the night, but not being able to eat what he wants affects him more.

The cookery course is a great idea tho thanks.

As for joining the Irish Society...the docs in the hospital suggested it to him. He said when he came out of hospital first that he would, but I think he's trying to come to terms with what he's been through himself first.
But I will suggest it to him again.

From reading other posts, some people seem to have suffered for years before they got a proper diagnosis.
Although we knew he had colitis, he never really suffered that badly until last September, when everything kinda happened at once.

Thanks for the advice tho.

lip · 19-03-2009 7:42pm

Thanks Silversurfer.I have to take calcium tablets but just haven't had the chance to go to chemist yet.Don't think I'll be jogging but I go for walks a lot so hopefully that will help.
Kildareash,I was told after my op that I would be able to start eating fruit and veg ect again but soon realised that I couldnt and 10 years on I still can't but I do indulge every now and again.Sometimes I pay for it but sometimes I'm ok after so its hard to judge.But I would go mad if I couldn't havecertain foods ever.You'll just have to let OH eat and drink whatever he wants really,hes an adult afterall.
best of luck.

kildareash · 20-03-2009 11:32am

Thanks Lip,

Reading the thread, has made me understand a little bit more of what he's going through.

This is his first flare up since he came out of hospital, so I suppose we've been lucky in that sense.
He just needs re-assurance from his doc that it's just a flare up and that he won't need to be hospitalised again.

He's cut back on his food and his GP gave him antibiotics and some other powder that you mix with water and he's starting to feel better.

Thanks all.

LegacyUser · 20-03-2009 11:00pm

Hi everyone,

I am knew to this board and have just recently started reading this thread. Would like to share my story with everyone.

I am twenty three years old and around march of 2008 I started getting blood in my stool on a daily basis. I thought nothing of it as i was training for a half marathon(8 runs a week) and I was in my final year in college. In June 2008 I decided to go to my GP and he decided just to be safe I should go to hospital and have a endoscopy done. I had no pains or weight loss or anything really accept for the blood in the stool so I wasnt expecting to find anything serious. After the procedure I was told I had colitis, was put on a dose of steroids and sent home.

About a week into taking the steroids i started to constantly vomit and became very dehydrated, I went straight back to hospital and was admitted straight away and put on a drip. This is when the fun started!! Over the next 3 weeks I was tried on countless amounts of drugs, none of them worked and my bowl motions reached around 20 times a day and I was also continuing to get sick. They finally tried inflimab however this didnt work. Finally after 3weeks I had to have surgery. I had the majority of my large bowel removed and I now have a stoma. Quite a lot to handle considering a month before I was completly healthy.

After 10 days post surgery I was released from hospital and thought the worst was over! However after a week of being home I had constant diarrhea through the bag and started to vomit again. Once again I went back to hospital and after numerous tests it was revealed my small bowel had become inflamed and it now looked like it was infected with Chrohns disease, on top of that I also had contracted MRSA and C-diff! The next 2 months were spent trying to treat the chrohns however I was on a lot of antibiotics to treat the C-diff and therefore was getting no where. I went down to six stone (i am 6ft tall) and I also spent time in ICU as i nearly died from all the complications.

Finally the antibiotics took care of the cdiff and a mixture of methotrexate and a high dosage of steroids took care of the inflamation of the small bowel. I was finally released from hospital in October 2008.

Its now march 2009, I am finished with all my steroids and I am just taking the methotrexate once a week. I am back to my athletics training full time and I am hoping to run a few races on the track this summer. This past year has been a massive shock. However I believe it has made me a much stronger person and I believe now I can handle anything. Although I have to live with a stoma for the rest of my life, this doesnt bother me at all because I just thank god/the docs in james hospital/my family and friends that I am still a live.

I wanted to post my story for two reasons:

(1) To see if there are many other people out there who have gone through similar experiences.
(2) To help those that are going through bad times that there is definitely light at the end of the tunnel, just stay positive.

nerdysal · 21-03-2009 5:48pm

I really never thought I would be making a post like this. I have already posted my story on this so I won't go into it again... but believe me there was a point when I never thought I would see my 18th birthday (19 now

). Anyway, I'm in fantastic health now... it appears that I am going to have to start watching my weight (which makes a change) and for all those people on a restricted diet- I could barely eat anything when I was really bad. But of late, I have been reintroducing foods like green peppers, brown bread, pasta sauces etc and NONE of them have been affecting me. I can't believe. But the most shocking thing of all is that lately I have been trying different fruits and some of them haven't been affecting me. Mainly plums and peaches... I'll never be able to eat apples or oranges (or popcorn- which kills me- I love that stuff) but at least I can eat something refreshing like a peach!
I wanted to post this because I was like so many of you only last year wondering if life would ever be normal, if I could ever eat a meal and keep it down- and if I did keep it down would it hurt me?! But now- in the past 2 months really, I can't believe the change of me... trust me (and more importantly trust your consultant) things WILL get better... but I'll be honest it takes a LONG time!

waterford1988 · 22-03-2009 9:35pm

Great to hear someone is doing so well.
I'm still unfortunatley struggling. My joints have flared up in my wrist, knee and hip. Stomach is'nt great either. And I have just been perscribed anti-depressent medication, which I am unsure if I will take because in my eyes they will not change the reason I have become depressed. Facing into college exams in a few weeks after missing a quarter of the year due to illness.
Still waiting on my consultant to get the ball rolling on starting remecide. The sooner the better and I hope things will then begin to turn around for me.
Anyway i'm not looking for sympathy just using this as a forum to vent:mad::mad::mad:

LegacyUser · 23-03-2009 5:28pm

Ye keep the head up, trust me once you get the medication that suits, you will never look back+will be able to lead a completely normal life. Try not let the disease get you down or depress you. In the end it will make you a stronger person. Was just wondering from all the people who have chrohns on this board did many of you end up getting a stoma? Many people have told me that my situation was very unusual, in that i have one at twenty three years old and only had the chrohns a few months before i had the surgery. Was wondering if anyone else experienced this? Also how are you adapting to life with the bag?

Thanks
Ken

lip · 23-03-2009 9:15pm

Hi,its nice to hear good stories.Good for people who have just recently been diagnosed to know its not all doom and gloom and you can lead a normal life.
Talking to a 20 yr old girl a while back and it came out she has Crohns too and was very upset,talking about never being able to have a family and a normal life.Was telling her about myself and think she felt a bit better.
I have 4 children,and although I have had my share of pain and flare ups,and have to watch what I drink and eat my life is just like my friends.

kildareash · 07-04-2009 10:21am

Hi Everyone,
My OH is experiencing a bit of a flare up at the minute.
It's been going on for about three/four weeks now. Some days he feels fine, other days not so good.

The thing is, it's only two weeks since he was with his consultant and he podded and poked at him and told him he was doing well.
I think he feels like a bit of a hypochondriac and is obviously fed up of not feeling well.

As i mentioned here previously, he was doing really well since he came out of hospital in December, and then all of a sudden he's feeling unwell.

Just wondering what to ye do to manage your flare ups.
For the last few days he's been drinking plenty of water and took yesterday off work to rest. He's an appointment with his GP this morn.
I'm also trying to encourage him to eat plainer food, more like his diet in hospital for a couple of weeks, give his body a break.
We can't pin-point anything in particular that be causing it and he really doesn't want to go back into hospital again.

The_Conductor · 07-04-2009 11:30am

Aside from medication (and a flareup will normally involve medication), management of Crohn's does change in a few different ways.

1. Sleep requirement may increase substantially.

2. Concentration may be worse- do your best to not insist on having him drive etc, unless its necessary, if this is the case.

3. Crohn's by its definition is a narrowing of the gastrointestinal tract. During a flareup its inflamed (hence medication may be required). You can minimise the potential for even more pain by eating foods that are as low residue as possible (if you're up to it). So- lots of Jelly, low fibre soups, liquid foods etc.

4. Different people have different 'trigger' foods (totally aside from stress etc). Mine is sweetcorn/maize etc. Most people learn to recognise what causes them problems and then avoid these items. When you are feeling well- you may be able to eat these foods without any problems at all- but when ill, they can be catastrophic.

5. Stress is a massive factor in Crohn's- minimising stress or removing the source of stress can be very helpful. This may involve changing work practices, or changing jobs.

6. The fact that you may have had a recent consultant's examination is wholly irrelevant. Many Crohn's sufferers are paranoid about being viewed as hypochondriacs- especially as in many cases diagnosis can take a long time, and the various manifestations of Crohn's can be viewed by many GPs as psychosomathic (especially given the random nature of flareups etc). Talk to him and convince him to ring his consultant for another appointment. Its possible the consultant may not wish to see him- and may be satisfied to prescribe on the basis of the recent visit. Its irrelevant though- the consultant is there for a reason- avail of his services.

7. Re food- the appropriate type of food will differ significantly from person to person. Plainer is not necessarily the answer. If the consultant feels he is not getting sufficient nutrition- your OH may be advised to take nutritional supplements. Thankfully these have improved significantly in recent years- Ensure and its competitors are now reasonably palatable. The cans are easier than making up the powder.

Feel free to post back here for any suggestions we might be able to offer- but make sure you convince your OH to ring his consultant.

kildareash · 07-04-2009 11:46am

Thanks...

Stress is probably a big factor right now...we're in the process of buying a house.

I think if we could figure out the trigger foods, it would be a great help. Right now there's no pattern to it.

Also the fact that it's been going on for a few weeks now intermittently, is kinda worrying.

I'll encourage him to ring the consultant again, for reassurance if nothing else.

Thanks again, your advice is really appreciated.

Green Hornet · 08-04-2009 9:16pm

My brother has recently been diagnosed with Crohn's. I suspect he's had it for a long time and the doctors missed it but I guess thats another story!

He's been on oral medication of increasing strength for the last few months but was really suffering. This week thay have admitted him to hospital and are using intravenous steroids to try and combat the swelling (he's very blocked up) and will do a CAT scan in a couple of days.

The hope is that they will not have to do an ileal resection if the steroids work. Does anybody have any idea of the success rate for the steroids?

Thanks!

The_Conductor · 08-04-2009 9:46pm

Green Hornet wrote: »

My brother has recently been diagnosed with Crohn's. I suspect he's had it for a long time and the doctors missed it but I guess thats another story!

He's been on oral medication of increasing strength for the last few months but was really suffering. This week thay have admitted him to hospital and are using intravenous steroids to try and combat the swelling (he's very blocked up) and will do a CAT scan in a couple of days.

The hope is that they will not have to do an ileal resection if the steroids work. Does anybody have any idea of the success rate for the steroids?

Thanks!

Its impossible to extrapolate the success of steroids for one person with the likelyhood of surgery not being necessary in another person. In Crohn's the swelling and blockages are one aspect of the disease. Another aspect is the scarring, and often recurrent scarring, which can both thicken the cell walls, and contribute towards blockages in its own right, even when the disease is in a less active phase.

Your brother really needs to discuss his own particulars with his consultant, in order to best explore what his options are. I would suggest he sit down and make a list of questions that he would like to discuss with the consultant, and bringing the list with him- as its very easy to intend to bring all manners of questions- and then forget them once you are there.

Shane

nerdysal · 09-04-2009 4:56pm

I believe steroids are generally quite good (except in my case- which was quite rare, so I won't scare you with it) but only in the short-term. My consultant was on The Afternoon Show there recently and was saying they are just not an option for long-term. They do some serious damage to the bones.

The_Conductor · 09-04-2009 5:20pm

nerdysal wrote: »

My consultant was on The Afternoon Show there recently and was saying they are just not an option for long-term. They do some serious damage to the bones.

Tell me about it. I'm 34 with osteoporosis, my last dexa scan was like something someone in their 80s might expect......

There are modern steroid drugs available specifically for Crohns- such as Budenofalk- which do not have the side effects associated with long-term steroidal use- but they are not suitable for everyone (and are also shockingly expensive). It might be something that could be explored with a consultant.

The big difference between Crohn's Disease and Ulcerative Colitis, and also why surgery is more often prescribed in UC patients- is surgery is a cure for UC- if the diseased tract is removed, the disease does not tend to recur. Unfortunately in Crohn's- this is not the case- it can recur at any time anywhere in the gastrointestinal tract, but more commonly at the joints of resections. Surgery is thus a 'last resort' rather than the first implement in the armoury when considering longterm control of the disease.

S.

Kevster · 11-04-2009 1:50am

smccarrick wrote: »

The big difference between Crohn's Disease and Ulcerative Colitis, and also why surgery is more often prescribed in UC patients- is surgery is a cure for UC- if the diseased tract is removed, the disease does not tend to recur. Unfortunately in Crohn's- this is not the case- it can recur at any time anywhere in the gastrointestinal tract, but more commonly at the joints of resections. Surgery is thus a 'last resort' rather than the first implement in the armoury when considering longterm control of the disease.

I know that this is regarded as a 'cure' for UC, but I've never seen it that way. I mean, you are always going to carry the UC genes in every other cell in your body anyway. The disease is still with you, but it just can't act. I know that I'm being pedantic here, but it's just that surgery isn't an option I ever want to have to take for my UC... ...:(

LegacyUser · 11-04-2009 5:20pm

Just a note regarding long term problems and steroids mentioned in previous posts. any form of steroids long term has consequences - entocort does not reduce osteoporeosis risk - if you have a look at the leaflet that comes with it - it states that long term it can cause the same side effects - also entocort is not proven to work to prevent flare ups if taking longer that three months. I'm just saying this as I was guaranteed that entocort does not cause the same problems as ordinary steroids - when in fact long term use of it is proven to cause the same damage as ordinary steroids - in fact I got osteoporeosis (excuse my spelling!) while on it long term(at age 23), even though I took calcium tablets! So be wary of long term use of ANY STERIOD, please!

Kevster · 11-04-2009 10:00pm

That's true. I'm 26 now but have been on steroids (Deltacortril (Cortisone)) a few times in the past. After a few weeks, the kness start to feel sore and your face kind of 'puffs' out, which isn't very nice indeed! We should always take a Calcium supplement when taking steroids because they (i.e. - steroids) increase the deabsorption of CAlcium from our bones.

watsgone · 12-04-2009 1:05pm

I have have problems with my knees for a while now, I was wondering if the steriods might have something to do with it.
I am taking calcium and pharmaton as well as meds, so many pills a day

The_Conductor · 12-04-2009 6:41pm

watsgone wrote: »

I have have problems with my knees for a while now, I was wondering if the steriods might have something to do with it.
I am taking calcium and pharmaton as well as meds, so many pills a day

You need to make sure that your consultant is aware of any issues you might be having, irrespective of whether its directly related to the underlying complaint you are visiting him/her for. Certainly- it could be as a result of the treatment you are- but it also could be any of a large number of other conditions- you need to get it checked out.

Saruman · 12-04-2009 10:00pm

Kevster wrote: »

That's true. I'm 26 now but have been on steroids (Deltacortril (Cortisone)) a few times in the past. After a few weeks, the kness start to feel sore and your face kind of 'puffs' out, which isn't very nice indeed! We should always take a Calcium supplement when taking steroids because they (i.e. - steroids) increase the deabsorption of CAlcium from our bones.

Do you suffer from UC on a continual basis? with the exception of one minor flare up last year, I have been drug free and UC free since I got out of hospital after being diagnosed in 2003 (maybe 2002).

I just avoid certain foods that I know are not the best for me, In fact the last flare up was because (I believe) I seont two weeks actually eating breakfast every morning and I had weetabix. I am not a milk drinker and I think whole wheat is probably not so good for me either after that.

I would say I have very mild UC, though it did not seem like that when I was weeks in hospital and pretty much lived on the toiled shíting blood. I still have scars on my hands from the IV lines as I could not eat or drink.

Crohn's Disease

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