Crohn's Disease

SusieBoozie

Hi,i have an Ileostomy,i have recantly started Taekwon do,my trainer wants me to get a padded brace for my stomach for protection incase i get some kicks to the stoma.Anyone know any good shops in Dublin or good websites for Belly protection belts?

hermajesty

Hi, I've had crohns since 1995. I've been on deltacortril several times over the years, and I found that my face would puff out towards the end of the dose. I never got acne from it, thank god. As with all steroids you may find that you will be hyper for a few weeks. I also noticed my appetite went thru the roof and I gained weight. I also had mood swings when coming off the steroids...one minute I'd be fine the next in tears! On the plus side they really work and you will notice a big improvement in your symptoms. best of luck!

orangebud

there has been a lot of studies that show that marijuana helps a lot with crohns Disease also i would recomend to change your diet to more fruit and Veg it helped with my thyroid a lot.

Best of Luck :pac:

https://www.youtube.com/watch?v=VJpYfeFHZRM

Cearam

Thanks a mil hermajesty!! Was with a different doctor yest and he told me I hopefully won't get acne but my face will prob puff up a little bit and my appetite will increase!I can deal with that as I do feel so much better since starting all the meds! Hopefully I can get off the steroids quick tho!!

SusieBoozie

Cearam wrote: »

Thanks a mil hermajesty!! Was with a different doctor yest and he told me I hopefully won't get acne but my face will prob puff up a little bit and my appetite will increase!I can deal with that as I do feel so much better since starting all the meds! Hopefully I can get off the steroids quick tho!![/QUOTE

hi,I have crohns 15 years and been on steroids for most of the 15 years.I never got acne.my bones are damaged,you should take calcium while taking them.I bloated out big time! Yeah your appetite will increase.steroids are great but for a short while.the min I come off them I hit rock.to me there a fake drug but do nothin for the crohns only make you feel better while on them.
But everyone is different.hope all works out for ye xxxx

LucyBliss

I got acne when I was on steroids for the third time. I think it was more to do with the high dosage I was on for a long time before it started to taper down. That was back in 2004. But when I was on them from April 2007 - January 2008, I hadn't a bother with acne. So it can vary.

My face did get a bit puffy every time I was on them and yes, I put on weight. Those two seem to be classic symptoms of being on steroids.

Ladjacket

Just a few things:

1) What feelings do you guys have when you are having a flare up? Recently I have been having a slight twinge in the stomach, just not feeling myself.

2) I am due to fly next week and having been placed on Imuran tablets, do any boarders have experience of flying with medication, would I need a doctors note to state I need the meds etc or will it be fine to declare at security?

Thanks guys

Northern Monkey

Ladjacket wrote: »

Just a few things:

1) What feelings do you guys have when you are having a flare up? Recently I have been having a slight twinge in the stomach, just not feeling myself.

2) I am due to fly next week and having been placed on Imuran tablets, do any boarders have experience of flying with medication, would I need a doctors note to state I need the meds etc or will it be fine to declare at security?

Thanks guys

I flew this week with imuran and didn't have any issues with security (UK, Singapore and Dubai)

CarrickMcJoe

SusieBoozie wrote: »

Hi,i have an Ileostomy,i have recantly started Taekwon do,my trainer wants me to get a padded brace for my stomach for protection incase i get some kicks to the stoma.Anyone know any good shops in Dublin or good websites for Belly protection belts?

Hi Susie
Try Comfizz.com , I purchased a couple of support vests and they are great. Quick delivery too.
There is a support belt for contact sports there for £10.00 stg.
Hope it helps.

ashblag

hi not a chrons sufferer but have colitis. in the middle of a flare up out of work for a week and a half. On steroids, increased pentasa also.

Due back monday although not at all 100%better.
How do I approach telling managment without going into horrible detail!? I will need to have access to the loo as needed. I work in manufacturing so not possible to leave my station unattended. I dont want to seem needy.
The stress of this is actually making me worse.

Also wondering do any of you also have any other conditions? I recently found out i've an underactive thyroid. Feel like my body if falling apart and I'm really getting down over it!:(

The_Conductor

ashblag wrote: »

hi not a chrons sufferer but have colitis. in the middle of a flare up out of work for a week and a half. On steroids, increased pentasa also.

Due back monday although not at all 100%better.
How do I approach telling managment without going into horrible detail!? I will need to have access to the loo as needed. I work in manufacturing so not possible to leave my station unattended. I dont want to seem needy.
The stress of this is actually making me worse.

Also wondering do any of you also have any other conditions? I recently found out i've an underactive thyroid. Feel like my body if falling apart and I'm really getting down over it!:(

Unfortunately with IBS and IBD- as they are not visibile illnesses, very often there is very little leeway given to people who are unfortunate enough to be afflicted with either.

If you need accommodations made- such as greater access to toilet facilities than would otherwise be normal- then it really is the case that you are going to have to sit down with your line manager and go into the detail of precisely why he or she should treat you any differently from someone else. A doctor's note would be very very helpful in this respect.

With respect of the underactive thyroid- its not unusual for autoimmune diseases to accompany one another. If you're not already getting treatment for the thyroid- you need to make an appointment to see an endocrine specialist.

At the end of the day- and if/when economic conditions get better in the country- you might really need to think about changing job into a lower stress environment, where the need for extra toilet breaks etc are not questioned to the extent that they might be on a factory production line.

Moving job is something that a lot of us have had to do, in order to have a better standard of living with our conditions.

Best of good luck- and try not to get too stressed out about your return.

ashblag

smccarrick wrote: »

Unfortunately with IBS and IBD- as they are not visibile illnesses, very often there is very little leeway given to people who are unfortunate enough to be afflicted with either.

If you need accommodations made- such as greater access to toilet facilities than would otherwise be normal- then it really is the case that you are going to have to sit down with your line manager and go into the detail of precisely why he or she should treat you any differently from someone else. A doctor's note would be very very helpful in this respect.

With respect of the underactive thyroid- its not unusual for autoimmune diseases to accompany one another. If you're not already getting treatment for the thyroid- you need to make an appointment to see an endocrine specialist.

At the end of the day- and if/when economic conditions get better in the country- you might really need to think about changing job into a lower stress environment, where the need for extra toilet breaks etc are not questioned to the extent that they might be on a factory production line.

Moving job is something that a lot of us have had to do, in order to have a better standard of living with our conditions.

Best of good luck- and try not to get too stressed out about your return.

Thank you for replying. And apologies was feeling very pissed off and sorry for myself last night. Shouldn't do as I know a lot of you suffer a lot more than I do.
My diagnosis is relativly new(2years) this has been my first Major flare up since the one where I was diagnosed.

And your right i could do with a lower stress job,but I'm just going to have to make ways to deal with it.
It's just the fact that I maybe fine going in and then after breakfast I could be in bits depending on what my body doesnt want me to eat this week!
And it's having to be treated differently,when i'm well I'm damn good at my job,and have been told so that I am.

I'm so sorry I just need to vent. It's so frustrating!

LucyBliss

ashblag, it absolutely is frustrating to be good at your job and to have to deal with crohns and/or colitis. I lost one job that I was really enjoyed because of having to take time off during a crohns flare (they didn't put it that way when they made me redundant obviously) and then I got another job that I really liked and that I know I could have been super kickass at as it was right up my alley, but then my health crapped out and because of the stress of running to the toilet, not being able to eat, combined with the stress of the job which just threatened to overwhelm me completely (I started to get chest pains at 33 - hell no!) and I had to give up work for a few years before my health got back on track.

I'm not trying to story top or anything, but there are times when I really regret and get peeved that it worked out that way and it's not a job I'd readily go back to now because I don't think my system could handle the hours and that constant pressure at this stage in my disease and my life.

Anyway, I hope that your flare levels out and that it gets more manageable for you sooner rather than later. And if you do talk to your manager, I hope that they're understanding and try to help.

ashblag

thanks lucybliss. had a sh1te night last night again. Depressed out of my mind with it all. dont care about work or anything !!!

pirategirl11

Hi Ashblag i have crohn's and colitis disease and like yourself was in and out of work an awful lot having bad flares and being put on extra pentasa and an awful lot of steroids,my job was customer service and was very stressful but i was lucky to have a very understanding manager who took the time to research my illness and understood how i was and was very supportive,i was made redundant 2 years ago as the company went into liquidation and i haven't been able to work since as i was v ill i have been trying out humira for the past 5 months altho it is helping with the bowl movments and bleeding it attacks your immune system and i have been suffering a bit with sinus and chest infections which prevents you from taking the injection until you are well.
sorry for going on but maybe your manager will be understanding i know it can be embarassing to explain this illness to people but it does make them understand.

ashblag

Well had a meeting with my manager today. Turns out her brother has crohns/colitis she is aware of what the illness is like. She has made an appt for me to see the company nurse.

Bowel movements still all over the place and still not eating properly but not as bad as it was.
Do have chill pains and a fever though,flu or chest infection only back in the door 2days

:rolleyes:sigh! think happy thoughts!

The_Conductor

Interesting article on Medwire this morning. Extract here.
Full Article here

LegacyUser

I'm wondering if any of you good people could advise. I was diagnosed 5 years ago with Crohn's after one of my regular pain bouts got so bad I had to be hospitalised (used to get bouts of pain/low level meh feeling for around 4 months of the year every year before hospitalisation). Anyway, had the usual operations, and haven't had anything serious since. A couple of 'episodes': some bleeding, mild stomach pain.

Anyway, last couple of months it really kicked off again. Has been on and off for 3 and a half months, which is pretty serious as far as I'm concerned. I happened to have an appointment in the hospital to check in around 2 months into this episode, and the (junior) doctor completely dismissed my symptoms, saying it was 'probably' just IBS, was I stressed, etc etc.

This is kind of annoying as I was misdiagnosed with IBS for years, hence my hospitalisation! I have another appointment due in two weeks, should I insist on seeing someone higher up?

The_Conductor

Mr Rosewater wrote: »

I'm wondering if any of you good people could advise. I was diagnosed 5 years ago with Crohn's after one of my regular pain bouts got so bad I had to be hospitalised (used to get bouts of pain/low level meh feeling for around 4 months of the year every year before hospitalisation). Anyway, had the usual operations, and haven't had anything serious since. A couple of 'episodes': some bleeding, mild stomach pain.

Anyway, last couple of months it really kicked off again. Has been on and off for 3 and a half months, which is pretty serious as far as I'm concerned. I happened to have an appointment in the hospital to check in around 2 months into this episode, and the (junior) doctor completely dismissed my symptoms, saying it was 'probably' just IBS, was I stressed, etc etc.

This is kind of annoying as I was misdiagnosed with IBS for years, hence my hospitalisation! I have another appointment due in two weeks, should I insist on seeing someone higher up?

I get quite angry when I hear things like this- I was misdiagnosed for years too- and indeed was only in intensive care on IV nutrition when they eventually twigged what the problem was......

You really need to bite the bullet and try to get to see a GI consultant (not a registrar or a member of the team- if necessary go private- but you need to see a GI consultant). I'm not recommending any particular GI consultants over others- however there are lots of very very good consultants out there.

Regardless of how badly my pay has been cut, and whatever else I have to sacrifice- I make sure all my little family have decent VHI cover, and get medical treatment when they need it- not when the whims of some junior doctor dictates so....... You need to see a GI consultant..........

YellowSheep

I just want to share with you all an amazing alternative I have discovered. My history is, that I was diagnosed 26 years ago with Crohn's Decease. I had problems on and off, never took proper medication due to travelling and working abroad. Like once it got unbearable I would visit a doctor somewhere in the world.
End 2007 I let it develop very badly with the result that I was hospitalized with a CPR count of 375. They got everything under control and have been under strict medication since. 15mg Predinsolon, 150mg Imuran and 4000mg Pentasa.
The side effects are obvious.
6 month ago I was talking to a German friend of mine which I hadn't seen since school. Anyway she had the same problem and told me that she stopped taking all medication and switched to Indian Frankincense, with 100% success. She would only take Pentasa when she would feel a session coming up. I started the same treatment 4 month ago. At first all was good, but than I needed to take my Pentasa again. However since the last two month all is good and I feel a million dollar, or better Euro....
I know that everybody is effected differently by this disease and things working for me might not work for somebody else. BUT I needed to let you know. Thanks Oliver

CD.

I've been having a problem with tiredness lately. I've been sleeping but I am just so insanely tired all the time for the past week, I don't know what it is at all. Do other people experience this?

Should I ring up the GI team/people and say it or should I just go to my GP? I was thinking that because I have to get the flu shot anyway, I could always ask him to do a blood test for deficiancies, would this be a good idea or should I ring the GI nurse? getting the GP to do it would probably save time.

I am going to my consultant in about 3 months and I have to get bloods drawn to test for deficiancies in two, but really if it is the problem I don't really want to wait another 3 months to get it solved. I don't feel like doing anything, I don't have the energy to do anything it's horrible.

I have had a bit of a mild flare up the last few days (blood/diahrrea) but nothing that I thought was too severe, could this be the cause and just a case of wait it out or would it be better to go for tests anyway? (though on one had I am happy I found a food I can't have, apparently raw red onions do not like me, I want to find these things out as soon as possible.)

Has anyone else experience this on Imuran? I read that it is also a side effect. I will bring it up when I next see the consultant but I don't want to make a mountain out of a mole hill if that makes sense?

I tried having one of those vitamin energy drink and I felt better and more alert for about an hour and then I just felt tired again but instead of just being tired, I felt tired and sick and unfortunately I can't take naps during the day, no matter how tired I am I won't fall asleep.

Sorry to be a bit of a whinger there, I just don't really know what to do at all >.< I've been missing college and just really going through the motions with other stuff I have to do and really just feel like giving up everything and just not do anything.

The_Conductor

CD. - If you have been having a flareup, as you've described- you really do need to organise an appointment with a GI as a matter of urgency.

I imagine that the sympthoms you're describing sound so familiar to most of us here in this thread- but other than recount our own experiences, it would be wrong for us to suggest anything other than go and get it checked out.

I would also suggest you discuss the flu jab with your GP- you may be more prone to some of the side effects than someone who doesn't have Crohn's (or other autoimmune diseases).

You need to go and get an appointment and get it (everything) checked out asap.

biomed32

Interesting programme on channel4 treating illness with food as medicine. The other night a dancer with chrons was on, it may be of interest to you
http://www.channel4.com/programmes/the-food-hospital/4od

MORISH

hi, it's been many years since I posted here but quick history, diagnosed with chron's at 17 now 33, on/off prednislone with constant pantasa for first 7/8yrs then bad flare up lasting 2 years with 2 surgeries & on TPN & then elemental 028 diet in-between surgeries but thankfully 2nd surgery was very successful. anyway I had a reaction to imuran and Celcept didn't quite keep me in remission after the surgery so I started Humira (my wonder drug) it's been amazing for me but with one thing & another in life I have not come off it after the 1st year like I thought I would, anyway what I'd like to know is, if anybody was on Humira & developed paorisis I had it slightly before I started but only minor breakouts on scalp. now tho I get it in several places including rectal area & it's always getting infected so I have been on antibiotics loads & only recently noticed on the Humira leaflet the connection. just wondering if anybody else had this problem? I mentioned it to my consultant & he is referring me to dermatology he mentioned that sometimes when this has happened in the past they double the dose of Humira, which concerns me, I'm thinking of coming off it & try Celcept again if that's the case. would love to know if anybody else got paorisis while on Humira?
thanks guys xxx

LegacyUser

smccarrick wrote: »

I get quite angry when I hear things like this- I was misdiagnosed for years too- and indeed was only in intensive care on IV nutrition when they eventually twigged what the problem was......

You really need to bite the bullet and try to get to see a GI consultant (not a registrar or a member of the team- if necessary go private- but you need to see a GI consultant). I'm not recommending any particular GI consultants over others- however there are lots of very very good consultants out there.

Regardless of how badly my pay has been cut, and whatever else I have to sacrifice- I make sure all my little family have decent VHI cover, and get medical treatment when they need it- not when the whims of some junior doctor dictates so....... You need to see a GI consultant..........

Thanks for the advice. I ended up seeing a different doctor (always a different doctor) and she was much better. She had the scans she had done on my bowels (both bowels) and was insistent that there was absolutely zero sign of disease/infected bowel.

So, I'm back to square one, and it'll be five months of this soon. I've got a stomach scan coming up, but I doubt they'll find anything there, as everything is quite visibly (and, eh, noisily) happening in my small intestine.

So, a GI consultant, eh? Any idea how I go about arranging something like that? I have basic VHI cover and have no job and no income, but savings which I could cover a visit.

scullen

hi new to forum.. have uc for the last 25 yrs.. have had various medications but the latest they want to try is infliximab.. is anybody on this and what are the side effects. last step before they do a colostomy. (which i have not got my head around)..

Any inormation would be helpfull

Ladjacket

scullen wrote: »

hi new to forum.. have uc for the last 25 yrs.. have had various medications but the latest they want to try is infliximab.. is anybody on this and what are the side effects. last step before they do a colostomy. (which i have not got my head around)..

Any inormation would be helpfull

I was on infliximab for a year from April 2010 until April of this year and attribute my well being to it. I don't know how much they have said to you about getting it done but it takes about 3/4 hours at the beginning and decreases the more you get used to it.

I found it to be fine (obviously different things work for different people) but it often led to me feeling REALLY hungry after wards and putting on about a stone extra in weight from eating and eating!

I was changed to Imuran from April of this year and I have to say that I prefer the Infliximab, I find Imuran to be...just not right! I find myself having bad days at times where I feel sore etc.

Hope this helps

LucyBliss

I was on Infliximab from May 2005 to March of 2007. It did help alleviate my symptoms a lot. Prior to going on it, I was barely able to go out the door. They like to schedule them every six weeks, if I'm remembering that right, and I found that it took a few doses for it to really last the six or so weeks. By lasting, I mean that, while I was still having to use the toilet urgently, the galloping incontinence that was my biggest symptom eased off considerably and I was even able to go out to dinner a few times. Granted, I ate lightly but I was still out of the house and eating food.
I was on Imuran at the same time. I've been on Imuran since 1996 and they've increased and decreased the dosage depending on my symptoms.

The biggest side effect I found with Infliximab was tiredness. I was wrecked after them for a day or so. If you can at all, don't schedule anything for a day or so after an infusion. If you're working, I'd really recommend taking the next day off if at all possible.

The infusion isn't so bad. It used to take longer to find a doctor to come and put in the cannula than it took to actually infuse the thing. I got a lot of reading done those days, let me tell you.

Oh, and scullen, I have an illeostomy now. I well understand what a big thing a possible ostomy surgery can be but I've had mine since 2008 and I'm doing better than ever. I'm not trying to be pushy, I'm just saying that sometimes it can be lesser of two evils. However, never mind that now & here's hoping the Infliximab gets you back on the right track again!

Ladjacket

As some people may have seen today, Man Utd player Darren Fletcher has said he is taking some time out due to his UC.

Obviously this is a terrible thing for him and one that most of us can sympathise with. It can only be a good thing however for all of us that it raises the profile of the illness.

For example, after my surgery and treatments, I decided to play soccer again. Having being a reasonable player, I was a lot slower and had not as much energy. Even though i tried to explain to my team mates and manager what the problem was and even though i was proud of myself for getting back on the pitch, some people just don't recognise an illness unless it can be physically seen.

This, I find, is one of the most annoying things about Crohns, IBS, Uc etc. It is hard to explain to people how you feel. Sometimes, I just don't want to do anything but still have to find the energy somewhere, whereas people can translate that as being lazy.

Hope you are all doing well.

HigginsJ

Its been a year and a month since i had bowel resection op. Being going great since. Get fairly tired from time to time even allowing for the b-12 injections. No pain in bowels/stomach at all since the op (apart from the opbviousop related pains).

Got a new job and have been going to the gym since August. As i say the tiredness can be a struggle at times but after the year i put down before the op i'll put up with it. Just wondering how long you stay on treatment for or is there any point in the future where i could possibly be drug free??