Crohn's Disease

LegacyUser

Has anyone been to the IBD Clinic in Tallaght hospital, does anyone know anything about Dr Ryan there?

LegacyUser

yes & yes & i can highly recommend both - they'll look after you really well

SQ80

Hi All,

I have just discovered this forum today. I find it very comforting hearing other peoples stories because i have only ever met one or two people who also have crohns.

Here is a little bit about me! I was diagnosed in Aug 2000 age 20 with Crohns disease. Had been unwell for about 6 months previous to that - main problem was abdominal pain, loss of appitite and weight loss. It was the weight loss mainly that triggered me go to the doctor. As i have always been very slight when i began to loose weight i became concerned. At the time i had dropped to almost 6 stone (but bearing in mind my usual weight is just under 7) I was put on Deltacortril and within a month had put on almost 2 stone because i was eating rings around myself. It felt great to be able to eat for a change. For months before i would eat 2 mouthfuls and then be full, unable to eat followed by severe pain. Was on the steroids for about 6 months. I found it very distressing because of all the weight, more so bloatedness....hated having to leave the house or go anywhere. I was then prescrised entocort and imuran which i have been on since 2001.

Had a relatively easy few years after I went into remission in 2001. At the end of 2006 had slight flare up - back on deltacortril for about 2 months. Watched what i ate this time!!

June 2008, another flare up, was prescribed colofac and buscopan to deal with the cramps until my appt with consultant (due mid July) but by end of June was in so much pain was admitted to hospital for tests to ensure it hadnt spread. Had the usual tests, colonoscopy, barium, ct scan..... Back on deltacortril (i call them fat tablets now!), until feb of this year.

Have been in remission ever since until a couple weeks ago when i havent been feeling the best.....on/off abdominal pain, difficulty eating, but dreading going back to doc again! Really dont wasnt to be put on the steroids again as i find the side affects - particularly the weight gain extremely difficult to cope with. I know people say "but if they make you well arent they worth it?". I dont feel this way at all.....doesnt do my self esteem any good and even dread going to the local shop!

The biggest problem i have and i dont know if anyone has the same is trying to eat. I have no appeitite at all and the thought of eating makes me feel nauseus. If food is put infront i me, i will eat some of it but very rarely manage to finish it. Im starting to loose weight again and am trying my best to force myself to eat 3 meals a day but finding it so hard.

Also find the tiredness very difficult to deal with, not many people are understanding when you have to cancel plans at the last minute due to tiredness or not feeling well.

Sorry the rant but nobody seems to understand!

Also on another thing i spotted about mortgage protection.....i also had an awful time getting this sorted at the end of last year - especially because of recent flare up.

S

nerdysal

For everyone who uses Twitter you can now follow the IBD For Long Term Illness campaign @ www.twitter.com/ibdforltischeme

Also, for those who have friends and family who don't have access to the a computer we now have a template for a petition. If you wish to get this email us @ ibdcampaignforrights@gmail.com and we can forward it on to you. Once it has been filled in you can post it back to us.

For more info about the campaign don't forget the website www.ibdforlongtermillness.weebly.com and also, if you haven't already signed it, please sign the online petition now http://www.ipetitions.com/petition/ibdforlongtermillness/index.html

For people in the Westmeath area, Ann Marie Gavin was interviewed by the Westmeath Independent. It was in yesterday's paper.

stickyviki

Hey guys,

Hope you are all keeping well. After having a pretty crap week myself. Started on Imuran 3weeks ago, but my body did not like it and for the last two weeks. I have not been able to eat anything, just feeling nauseous and vomitting non-stop. Also got a serious pain just below my breast bone, could barely walk, even lying in bed was extremely uncomfortable.

I am very lucky to be on good terms with Dr.Breslin up in Tallaght hospital and after leaving a voice-mail on thurs morning for him, he gave me a call at home thurs evening telling me to stop takng the Imuran asap. I was delighted, i thought i was going insane on that drug.

So i seen Doctor B. yesterday and he think's it's best if i go on remicade(infusion) once every 2months. I was just wondering if anyone has any info on this for me??

I really hope my body doesn't reject this one too. Really tired of feeling like this. Weight just keeps dropping off me.

Cheers,

-Viks

nerdysal

Whe I was on Remicade I got the first 3 infusions every second week and then after that it was every 8 weeks. Unfortunately for me, I would only feel well for about 4 weeks and miserable for the other 4 while I waited for the infusion.

But then I have been on imuran for a year and a half and feel great. Everyone reacts so differently.

Hope you feel better soon and the remicade works out for you.

Just on a side note, don't know if you've heard about our letter writing campaign (to get crohn's on the long term illness scheme). You can get the links to our website below (in my signature) and also a link to a petition- would be really grateful if you could sign, takes half a minute!!

Sal

LegacyUser

Cheers for the reply.

Just signed the petition, and will forward it to friends and family. It is terrible that Crohn's is not recognised as a Long term Illness. When I told my doctor that my application for a medical card had been declined, he was so surprised that Crohn's was not recognised. He classifies it as a definate long term illness.

-Viks

lip

SQ80,know how you feel about steroids,but they are necessary.I have been on and off them for 15 years,and find that its easier to lose weight than gain it,I have been everywhere between 6 st and 11 st over the years,Im now 9 and quite happy.GP put me back on them again this week,didn't want to cos I was diagnosed with osteopenis a few months back,but I would take anything to get a few pain free days and get my appetite back,miss my dinners.
Stickyviki,I was on the infusions for a while,it made my symptoms worse unfortunately.After having them,I would feel extremely tired and nausious for 24 hrs after.Like Nerdysal says,everyones reacts differently,I have been on imuran for years on and off with no side effects.
Hope the petition is going well,must make sure my friends and family have signed it,did tell them.

E.T.

Hi, just wondering if anyone else gets kidney infection type symptoms with their Crohn's? I'm female with mild crohn's and I'm taking 3200mg asacolon and 4-8 buscopan every day which has the worst of the symptoms under control. Every so often I'll get what seems to be the typical mild flare lasting between 2-6 weeks - running to the loo, pain, very uncomfortable abdominal swelling, nausea and awful gas, but I also find that I have pain when urinating and get a stabbing/sharp cramping pain down into my groin. I've gotten tested for a kidney infection when these symptoms have occurred before but it's always been negative. I had a very bad kidney infection when I was younger and ended up in hospital and this feels really similar. I haven't slept properly for the last week - I actually couldn't sleep at all last night because I was up and down to the loo so often. Naturally I've never had these symptoms anytime I've gone to my consultant and he has said that he doesn't think it's related. Just wondering has anyone else experienced urinary symptoms like this? It kind of feels like everything inside me is so swollen and spasm-y and toxic.

The_Conductor

E.T. wrote: »

Hi, just wondering if anyone else gets kidney infection type symptoms with their Crohn's? I'm female with mild crohn's and I'm taking 3200mg asacolon and 4-8 buscopan every day which has the worst of the symptoms under control. Every so often I'll get what seems to be the typical mild flare lasting between 2-6 weeks - running to the loo, pain, very uncomfortable abdominal swelling, nausea and awful gas, but I also find that I have pain when urinating and get a stabbing/sharp cramping pain down into my groin. I've gotten tested for a kidney infection when these symptoms have occurred before but it's always been negative. I had a very bad kidney infection when I was younger and ended up in hospital and this feels really similar. I haven't slept properly for the last week - I actually couldn't sleep at all last night because I was up and down to the loo so often. Naturally I've never had these symptoms anytime I've gone to my consultant and he has said that he doesn't think it's related. Just wondering has anyone else experienced urinary symptoms like this? It kind of feels like everything inside me is so swollen and spasm-y and toxic.

Yes- I've constant kidney problems, which is very unusual for a guy, and the protein dip test is always mildly positive. I'm not on anything for it- as if I were I'd be on antibiotics pretty much indefinitely- which would wholly defeat the purpose of them. Sometimes one is worse than the other- but thankfully, painful as it is, its nothing in comparison to Crohn's cramps.

Apparently its not unusual in Crohn's patients- though more common in women than men.

E.T.

Thanks it's good (in a very strange way!) to hear that it is just another fun part of crohn's.

lip

Hi E.T.,have you had your kidney function levels checked?I was taken off Pentasa last year as my levels were high.Could be totally wrong,but worth a mention.
GP increased deltacortril on Monday.Hes giving them a week to work and if not I will have to be admitted and be put on IV steroids,and discuss surgery as obviously Humira isn't doing the trick.Its almost certain I will need a colostomy,do any of you have a stoma?I am very nervous,not of the surgery,but living with a stoma.I worked as a nurses aide years ago and remember caring for a patient with one.I believe the bags have come a long way and are very discreet,but don't know anyone who has one to ask.Any info would be great,I have visions of being in a pub and leaking,or out shopping.Probably ridiculous I know.Thanks.

Peadar87

Hey just discovered this forum today think its very good

Have had crohns since was 15 now 22. Been in remission for last couple of years although sometimes get stomach pains. On pentasa and iron tablets every day. Consider my self quite lucky in comparison to other suffers as ive been in very good health for the last few years. When I was diagnosed it took months to actually find out what was wrong had been feeling very tired pains in my stomach, gettin sick not able to keep food down etc. but luckly diahorrea was never a problem:D. Had loads of tests done but it wasnt until i had a colonoscopy that they figured out it was crohns.

Sure i said i would share my experience with everyone. All the best.

LegacyUser

lip - what dose of humira are you on & have you been on it long?

ladybirdirl

Evening all,

Just had to type a quick post re the Humira

Started a few weeks ago & it's been a god send. I must admit when I do the injections it stings & I end up using language that would make a sailor blush:rolleyes: but it's helped so much.

Still on the Imuran with it but here's hoping

LB

lip

Hi,I'm on 1 injection twice a month,and have been on it since February.GP told me to go to A&E on Friday.After 7 hours sitting around,got called in.Had stomach and chest xray done.Nurse told me the doctors said there was nothing they could do as there was no GI doctor on and my condition wasn't life threatening.I couldn't believe it and said if I had a broken toe they would try to fix it even though its not fatal.Insisted on seeing the doctor so reluctantly he saw me.He decided to admit me,but only for pain relief until my consultant came in Monday.I didn't want to be stuck in there all weekend as I have 4 kids,so he gave a script for durogesic patch.Got bad reaction to that Sunday morning,tongue swelled up,numb all over and itch all over,so had to take it off.Rang doctor and was told to take a piritan.OK now TG.Waiting on GP to fax letter to hospital now again and go through the whole saga of A&E again today.Hopefully this time something will be done.

LegacyUser

lip - you can increase to 1 a wk of humira -loadsa people with arthrithis take this dose - check with your gastro asap

LegacyUser

Lip - I hate going to a & e - so totally can get where you are coming from - can your gp get you an appointment with your gastro any quicker to save you going through a & e

BrianJD

Hi.

You can def take humira every week as i am doing. Just quick question, I will be travelling to Florida on Sat and it'll will mean taking 2 humira pens which will be away from a fridge for 15-16 hrs. Any suggestions how to keep it refrigerated? I was wondering if a lunch box being topped up with ice would work. I could get more ice on the plane. Would ice in contact freee the pens. Last year I had a sandwich sized cooler bag but can't seem to find it. I've got two ice packs from the chemist which i will probably wrap around them. Any advice would be really helpfull.

Thanks

LegacyUser

Brian - have you considered asking the flight attendants to put it in the fridge on the flight - thats what the nurse told me to do before - also i remb asking what would happen to my humira if the fridge broke (as the electricity has often cut out overnight on us, being in the country were not a priority to be fixed!) - she said it actually keeps for 12 hours out of the fridge fine - its sunlight thats a no no - maybe phone the humira nurse and check how long it'll keep out of the fridge just in case i heard her wrong - but i always leave my injections out for an hour before injecting as they don't hurt then!!

colsers22

Hi everyone. Hope you're all doing well..
I have been having a lot of problems recently. It seems my current medication (imuran and salazopyrin) is no longer effective. I went for a barium follow through which was clear. I have a left sided colonoscopy today. I am guessing my problems are in this area.
My doctor mentioned Humira on my last visit. I see it being mentioned a lot on this forum. I am just wondering how ill you have to be before they will prescribe this treatment? How does it impact your life, I am worried about the side effects.

Thanks.

nerdysal

When i was on Humira I got headaches and felt exhausted the day after. But for the rest of the 2 weeks I felt fantastic. The only reason I'm not still on it is because I was prescribed it too late. By the time I started taking it there was too much inflammation and surgery was necessary.

Just wanted to welcome Peadar to the group. I was diagnosed when I was 15 too! Glad to hear your keeping well.

Keep supporting the IBD for Long Term Illness Campaign by accessing the links in my signature!!!

The_Conductor

Irish Health (dot com) have updated and revised their Crohn's and Ulcerative Colitis Clinic.

Link here

(Note: this requires free online subscription to their website).

lip

Hi,just a quick update.Ended up being admitted.was there for 10 days,with no tests done,other than blood tests,and on the same mpain killers as I use at home.I was switched from deltacortril to entocort.I spoke to surgeon yesterday,who has organised a barium for next week,and a scope for thr following week,and discharged me.Surgery is the next thing,the tests are to see what type is needed.If they decide to fix the fistulas at the same time it means I will need a stoma.Fully prepared for it I think,anything to ease the pain,but still a bit nervous.
How sick do you need to be for Humira?Not sure,in my case,Remicade was tried first,and when that failed I was put on Humira.
Travelling with Humira?I got a pouch with an ice pack in it with the pack the nurse gave me.It doesnt say how long it keeps cool for in it though,just says a few hours,but is a few 3 or 6?The box with ice is a great idea,and I'm sure if you ring the airline they will arrange for it to be put into the fridge on the flight.

colsers22

Update: Based on the results of my scope they are starting me on Humira.
I went for the x-ray and mantoux test yesterday, so all going well I will be starting the treatment on Monday. I am feeling pretty positive about it. I've had such a horrible 6 months and hoping this is the beginning of relief. Will let ye know how I get on.

kildareash

Hi Lip,

I haven't posted on here for a while, but I just read your question bout the stoma and colostomy.

My boyf had colostomy back in June. Brief history: was initially diagnosed with UC, two years ago. Last Sept was admitted to hosp with severe symptoms. He developed anal fistulas, and in the end they put him on a food drip to rest his bowel.
He had pentasa for a few weeks, imuran and finally humera. Although, the surgeon told us recently that when the imuran didn't work, it was unlikely the humera would! Anyway, after a brief remission, the symptoms flared up again and we were told surgery was the only option.

The stoma nurse called to the house and went through everything with us.
TBH I actually cldn't believe how discreet and lightweight the bags are.
Even in the days after the op, when he was just lying in bed with a t-shirt, you honestly wldn't notice it.

Unfortunately he has suffered some side effects since the op and had to go back into hospital 10 days after he came home.
But in those 10 days the bag and stoma were trouble free. (Thank God, touch wood). He was changing it himself without any problems. Took a while the first day, but he was starting to get the hang of it. And even despite the complications, the stoma has remained unaffected.

Best of luck with everything

lip

Thanks for that Kildareash,its just such a big step,but honestly at this stage,I would try anything.Its good to hear from the partner of someone who has it.DH keeps saying it won't change anything,but in my own head I'm thinking it has to.I know if it was the other way round I would be fine with it,but it doesn't stop me wondering.

kildareash

lip wrote: »

I know if it was the other way round I would be fine with it.

You just answered your own question.

For me, I was looking forward to getting our lives back and being able to enjoy doing things together again.
He hasn't been able to socialise in months, and it'll be great when he gets back on his feet and we're able to go to the cinema or out for a few drinks.

The IA are also a good source of info...they sent me some fact sheets which were really useful.

The_Conductor

kildareash wrote: »

You just answered your own question.

For me, I was looking forward to getting our lives back and being able to enjoy doing things together again.
He hasn't been able to socialise in months, and it'll be great when he gets back on his feet and we're able to go to the cinema or out for a few drinks.

The IA are also a good source of info...they sent me some fact sheets which were really useful.

Hi Ash-

Just a few things- though your other half may not want to admit it- he could very well be getting a lot more tired than he used do. Also- going out for a few drinks could be problematic- often alcohol can exacerbate Crohns. Its not the case that life goes back to normal after surgery (or other treatment)- its more that you have a lifelong condition- and when you learn how different things affect you- you can do almost anything, but it is a learning process.

At the moment I'm in the middle of a flareup (stress related), but there are many foods that would kill me if I tried to eat them right now- which might be perfectly acceptable in a few weeks time.

Often people don't want to admit to themselves, or others, how a condition like Crohn's might be a limiting factor.

lip

Kildarish,I'd say DH is the same,just wanting our lives back.I have to say,I have always been dtermined not to let it take over my life,but I have finally lost that battle.I don't think its food thats causing my pain this time,I get it even if I haven't eaten.I hope your DH recovers quickly.
Smccarrick,I do think your'e right about not admitting how it affects us.I tend to tell peoople I'm fine,but I could be in bits.I hate making a fuss,and in a wierd way consider myself lucky that my condition is not terminal.I have been to numerous funerals of people who have lost their battle with cancer,and I feel even though this is a pain,literally,I am still here to see my kids grow up.
Sorry,got a bit morbid there.
Hope your flare up gets under control soon.