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Crohn's Disease

12357…44

Comments

  • #202
    Kevster
    Closed Accounts Posts: 2,980 ✭✭✭Kevster


    Hi,

    That's good to hear that you are doing better. I suffer from UC continually - yeh - but I have actually come off my anti-inflammatories recently and am doing okay. i also recognise foods that make it much worse. For example, if I eat a Pink Lady apple, it feels like a bag of nails is tearing through my gut! I have also noticed problems with wheat products too.

    What do you eat for breakfast and lunch? I eat Special K for breakfast mostly, a sandwich for lunch, and then tuna/salmon and 'health' crackers for dinner. Oh, and fruit too. yeh, basic diet I know.

    Kevin


  • #203
    Saruman
    Registered Users, Registered Users 2 Posts: 11,389 ✭✭✭✭Saruman


    I tend not to eat breakfast, its not my thing. Mainly because I have always disliked milk so never stick with the cereal thing.

    Sometimes I will get a breakfast roll and skip lunch if I am in the mood for a good fry :D

    I have little restrictions in what I eat except for avoiding red meat and everything I mentioned above.


  • #204
    Kevster
    Closed Accounts Posts: 2,980 ✭✭✭Kevster


    Wow, I haven't eaten a fry-up for many years now. The only meat I eat is chicken, turkey, tuna, and salmon. You shouldn't skip breakfast dude! If you think about it though, you don't have to have milk for breakfast. On the continent, they don't even eat cereal too much. It's just an American/British thing.

    Kevin


  • #205
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hi guys,
    Ive had chrons the last 6 years now(im 21) and am going for my first remicade infusion on monday. Anyone care to give me a bit of what to expect and I would greatfully appreciate it.

    Thanks,
    Best of luck to everyone fighting this thing, never ever give up fighting!


  • #206
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hey - best of luck with it

    I'm not sure if you ment how you might feel re side effects etc after or what the day in the hospital consists of -

    But the day of the remicade - you go in to the day ward, get the remicade in a vein through your arm - like when you get fluids if your dehydrated & sit/lie there for a while - usually about 2 hours, a nurse will come to check your blood pressure & temperature before, during (a few times) and after getting it. A dr comes to start it off & put the needle in your arm. So its generally more boreing than anything!! I brought my laptop & watched dvds - so defo have a magazine or i pod or something to pass the time!! - sometimes it might take longer than 2 hours - if for eg your blood pressure gets low (happens to me the whole time!!), so just note that you should allow yourself the whole day so dont worry if it takes longer - it just means they're taking good care of you! If you feel any thing different while getting the remicade make sure to tell a nurse/dr, whoever is around - they do need to know as it could need to be stopped for a bit & re-started.

    If you want to know about side effects ask the doctor giving/setting up it - in the box it comes in theres a leaflet which they'll throw away - but its useful to have to know what you should tell your doctor, but please dont be alarmed by them, every drug has lodsa side effects and it doesnt mean you or everyone gets them. Thats why you get it in hospital - to be monitored. Do make sure after getting it if you feel yourself getting a cold/flu etc to tell your dr as your immune system may not be as strong to fight it off & you might need antibiotics or a break in remicade doses - so it can be delt with once your dr knows.

    It can take a few doses to feel better, but you could see an improvement straight away, it all depends on you & your body & not forgetting your crohns!!

    I hope its the drug for you!! Good luck - if you've any other questions post away & I'l try answer them! :)


  • #207
    silversurfer
    Closed Accounts Posts: 145 ✭✭silversurfer


    If you look at an earlier post of mine in this thread, I outline the procedures I went through for both Remicade and Humira.

    Rgds,
    s


  • #208
    kildareash
    Registered Users Posts: 1,531 ✭✭✭kildareash


    Hi everyone...
    Bad news this week, consultant recommended an operation.

    Quick update:
    OH spent three months in hospital before Christmas.
    All the other remedies didn't work, but Humera seemed to be doing the trick.
    About six weeks ago, he had some symptoms of a flare up. But they'd last for a day or two then he'd feel fine for a few days.
    Anyway, last week, the situation escalated. His GP was worried about the amount of blood he had lost over the weeks, and referred him back down to hosp.
    Hosp booked him for scope the very next day and the consultant rang on Monday with an appointment for this week.

    He basically told him that he's having a bad flare up and recommended he have surgery. However, there doesn't seem to be a sense of urgency. He's organising appointments with stoma nurse and the surgeon. But it will be OH's decision whether he wants to go ahead with it.

    He's 28 years of age, and obviously the prospects of what the operation involves are freaking the hell out of him.
    To me, it kinda feels like the doc is giving up on him or something.
    Reading other posts here, people talk about being on steriods long term.
    Since he came out of hosp, he has had one course of steriods for a week, but he did start to feel a bit better.

    Has anyone looked into alternative treatments?? We're willing to try anything that won't make him worse, but might make him feel better.

    Also, we're thinking about getting a second opinion. Currently, he's under Dr Courteney in Kilkenny, which we have heard great things about, and can't fault him to date. But I don't think it would do any harm to speak to someone else. Any recommendations??

    Finally, many of the previous posters have had operations, would you mind sharing your experiences of life after the op with us?
    We've tried to do our own research on the net, but I'm so cautious about it because it can throw up anything. But there doesn't seem to be much information from an irish point of view.

    Any help would be really appreciated.


  • #209
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    I'm a bit of an extreme case- I've had surgery 5 times thus far.

    Its not possible to compare one incidence of surgery with another to be honest. There are very many factors which will vary from person to person- but also when they do perform the surgery its also entirely possible that they may find conditions to be better, or worse, than expected when they open you up.

    The first time I had surgery- I had been suffering with undiagnosed Crohn's for over 10 years. What the surgeon expected to be a fairly straightforward operation and recovery- turned into 9 hours of surgery with multiple resections and then several days in ICU thereafter, before I progressed into the regular system.

    I had VHI cover- but it only kicks in if the facilities are available- so recovery for me after ICU was on a ward with 7 other men- the youngest of whom was 55 years older than me. I was so ill that it didn't really matter that I had nothing whatsoever in common with them- but I did feel self conscious and embarassed- particularly when I needed assistance going to the bathroom or was having my wound cleaned and checked. It didn't help that the hospital decided to feature me in their exams for med students- because of the extreme nature of my condition and the multiple resections I had undergone.

    Prior to the surgery (with a Mr. Parnell Keeling) the consultant had broached the strong likelyhood that I might need an ileostomy bag- and had given me a leaflet on it- which frightened the hell out of me. I was emphatic that it was to be a very last option, and luckily for me, he decided during surgery that it would not be necessary.

    Recovery was long and hard. The hardest part of recovery I found was being confined to nutritional supplements- when I felt that I wanted to eat the world around me. I even feel ill now at the thought of the taste of Ensure and other supplements- having lived solely on them for so long.

    When eventually I was able to eat again- I did so with a vengeance. My weight had fallen dangerously low (I was ~ 6 stone), I had very little muscle or fat on me. I went swimming 4 or 5 times a week- and ate rings around me.

    The most notable aspect of things for me- totally aside from the excrutiating pain, was the incredible fatigue and lack of energy I had. You do eventually accept pain as part of your life- but its very difficult to accept that you don't have the energy to even read a book, or watch television (never mind anything that actually involves exertion).

    I recovered from the surgery over a number of months- and was looking forward (I hoped) to the end of pain. I was very dismayed when less than a year later I was once again confined to bed in pain- this time with massive bleeding. A diagnosis was not necessary- my consultant had me admitted to St. Vincents via the ER, and I was placed on a hydrocortisol drip for several days. As the severe flareup subsided, I underwent another colonoscopy. It was determined that the disease had recurred where the second resection had been done in the large intestine- and further surgery was necessary.

    Surgery no. 2 was notable for its lack of any complications whatsoever- along with a private room overlooking a field of cows. I had a peaceful time watching those contented creatures for a few weeks.

    It was thought that I might get away with treating the flareups with steroids- and over the next few years I was on different types of steroids, by drip, injection and oral application- pretty much continuously- along with Pentasa, which I was informed was a wonder drug. In my case it may as well have been a placebo for all the help it was for me- but everyone is different.

    I subsequently had surgery twice more in my 20s- with a notable increase in how quickly I recovered after the surgery on each occasion. On one occasion I was allowed leave hospital after 4 days along with a supply of distilled water to clean my wound and instructions to return in 2 weeks to have the staples removed. I very unfortunately managed to burst the staples, and presented myself at the GPs surgery in Rathmines, not really sure what to do. The poor GP freaked and called an ambulance when she saw me. My staples were redone, and I was sent home again.

    I last had surgery almost 5 years ago, which once again akin to my first surgery, involved multiple resections- and being a feature on the Med exams again (I actually enjoyed it this time). Recovery the last time was a lot slower than on previous occasions, and I now have a lot more of the traditional Crohn's symptoms than I had as a child and a teenager. I always like to know where the nearest bathroom is, I keep spare underwear in my drawer in work, I never venture anywhere without a supply of deltacortil, or if abroad, a doctors letter in whatever the language of the country I am in detailing my condition and how to treat it. I have fallen ill while abroad on work- but somehow managed to muddle my way through with the help of some of my overseas colleagues.

    I don't mean to terrify you or your other half with a horror story- and I don't want to appear blase about surgery, as I do believe I am blase- having had so much of it. There is little point in trying to equate my experiences with what your OH may have to undergo- everyone is different, and everyone's experiences are completely different. What I do think is very helpful- is having a good attitude towards what you have to undergo- along with a clear picture of where you want to go with it.

    Surgery is a tool in the control of Crohn's- the big difference between Colitis and Crohns is surgery is a cure for Colitis- whereas the disease may very possibly recur in Crohns- more often than not, at the point of the resection.

    By all means get a second opinion from another consultant- but from personal experience I would not consider a prescription of surgery to equate with a consultant giving up. Sometimes surgery is a lesser evil than the alternates- when you weigh up the options, all options have pros and cons associated with them.

    Surgery can be a very frightening prospect- and it can take a long time to recover from. It might be helpful for your OH to talk to people who have undergone the surgery already- it might help him understand what is ahead better. Recovery from the surgery is a composite of a lot of different factors- and is not something that can be rushed. It may take one person months to recover, while another may be fine in a matter of weeks. Personally I feel that the frame of mind you are in is at very least as important a factor in recovery, as is the nature of the surgery itself.

    Best wishes to you and your OH.

    Shane


  • #210
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    The Irish Society for Colitis and Crohn’s Disease (ISCC) AGM and Open Day is on tomorrow, Saturday 25th April 2009.

    Venue: Academy Plaza Hotel, Findlater Place, off O'Connell Street, Dublin 1. Speakers: Mr. Eadhbhard Mulligan (Surgeon) and Dr Claire Smyth (Gastroenterologist). Time: 2:00-5:00pm.

    All welcome.


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  • #211
    5k runner
    Closed Accounts Posts: 28 ✭5k runner


    Hi kildareash,

    Sorry to hear about your OH troubles at the minute, but trust me he will get better. Try keep a positive outlook. I am twenty three years old and I only had symptoms of chrohns for 2 months before I had to have surgery. They tried all the drugs possible however my case got worse very quickly and therefore I needed to have the surgery done.

    I am now 8months living with a stoma and I have not looked back. I am back working full time and I am training 6times a week in athletics hoping to compete fairly soon. In my opinion the surgery I had was the best decision I ever made and even though it may seem like the end of the world to have it done it really is not. By having a stoma it does not stop you from doing anything. I even go to the public swimming pool and it is not a problem.

    If there is anything else I can help you with or any questions you might have, please feel free to ask.

    Regards
    Ken


  • #212
    crohnsgirl
    Closed Accounts Posts: 8 ✭crohnsgirl


    Hi everyone!
    my name is karen im 20 and i was only recently diagnosed with crohns disease last year after suffering for a full year. It started with a small pain in the bottom of my stomach, i was constantly in the dotors and he always told me it was a kidney infection!

    it gradually got worse from there and within a few months i droped to 5 stone. My GP then sent me to saint vincents mental institute as he told me i was causing harm to myself because i a supposedly making myself sick? I went through weeks of counselling and strangely enough it didnt work? i was sent home things got that bad my urine had pieces of my stomach in it! the doctor said id taken it to far! finally i went to see a different GP and he ran test and immediately sent me to the hospital after two months in hospital they still did not know what was wrong! then my bowel collapsed and i was rushed to have emergency surgery and only then did doctors realise i had crohns disease!

    I had the majority of my bowel taken out and my bladder reconstructed as my bowel had rotted into my bladder.. after a few weeks i was sent home from hospital i felt really alone and sick as no one else could relate with how i felt finding out i had a disease and a huge scar down my stomach but i have got over that and just thank God im alive and well (as well as i can be) and iv been fine since.. iv put all the weight i lost back on and iv had no flair up's yet! im currently on 4 Imuran a day 50mg each and 4 Solfalk a day 200mg each!

    I have yet to find anything that i cant eat yet! I still eat everything i did before i fell ill and some more.. so hopefully it stays like that! I really like my food! lol

    Recently iv been having some pains and some swelling, im going to go the hospital to see whats going on il keep you updated!

    Thanks for reading! Just thought id share my story sorry if its a bit long!:D


  • #213
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    Hi Karen, sorry to hear what you've been through. I can relate to a lot of it- I too was referred to a psychiatrist.

    I'm not sure that there is a specific one size fits all diet for Crohn's suffers- people say to avoid salads and alcohol- different people find some foods to be absolute poison others fine- it really depends on the person. You should organise an appointment with a good dietician (St. Vincents where you are attending have a good team), who will be better able to sit down with you and give you some ideas of meals and snacks that are appropriate for you.

    Sorry to hear that you haven't been feeling the best of late again.

    Shane


  • #214
    Ciara D
    Closed Accounts Posts: 14 ✭Ciara D


    Hi Shane and Cathy,

    Nice to meet you both today.

    I have never been on boards before so it will take me a bit of time to read back on everything. It is a very similar idea to what some of us have done on facebook, under Crohn's Ireland. Some of us that took part in the Manifesto for Young People set it up so we could keep in contact and share stories.

    Talk Soon
    Ciara


  • #215
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    Hi Ciara,

    Nice to meet you too- sorry we had to run in a hurry- our 3 hours on the parking was up.

    We have a 'Useful Links' thread- any useful links or information you might like to post there would be most welcome!

    I took part in the Manifesto too- it will be interesting to see what transpires.

    Welcome to our little haunt :)

    Best wishes,

    Shane


  • #216
    crohnsgirl
    Closed Accounts Posts: 8 ✭crohnsgirl


    Hi Shane,
    Thanks for your advice I was wondering were i could find a good dietician.. Im going to make an appointment with them soon hopefully because im positive that the food im eating can be good for me or my bowel!

    Karen:D


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  • #217
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hi crohns girl - I went through a similar situation with my crohns - I was also told i was making myself sick & not eating - but i was diagnosed with crohns at the time so they had no excuse to do that - anyway the gist of it was i went to another doctor who was appalled that they were treating me like that - and upped my medication and i put on weight and ate more in a week than i did in a year. so i empathise with what you went through - the one thing i learned from it is to trust my own body and how i feel and not to accept what anyone says if you feel otherwise. I must say they almost had me convinced that it was in my head but I definately wont be letting that happen again. All the best.


  • #218
    crohnsgirl
    Closed Accounts Posts: 8 ✭crohnsgirl


    Unregistered wrote: »
    Hi crohns girl - I went through a similar situation with my crohns - I was also told i was making myself sick & not eating - but i was diagnosed with crohns at the time so they had no excuse to do that - anyway the gist of it was i went to another doctor who was appalled that they were treating me like that - and upped my medication and i put on weight and ate more in a week than i did in a year. so i empathise with what you went through - the one thing i learned from it is to trust my own body and how i feel and not to accept what anyone says if you feel otherwise. I must say they almost had me convinced that it was in my head but I definately wont be letting that happen again. All the best.

    Hey,
    I know its a horrible feeling been made believe somthing so terrible when you know deep down you'd never do something like that the doctors are really not educated on crohn's disease and dont know how to spot the symptoms! Im glad to hear your doing good im doing good to date hopefully it stays like that for a while! :)

    Thanks for your reply, keep well! ;)


  • #219
    Green Hornet
    Closed Accounts Posts: 3,305 ✭✭✭Green Hornet


    It seems that doctors over here are very poor at diagnosing Crohn's Disease. My brother had problems for a few years and they more or less told him that it was in his head as well. Finally got diagnosed in the Blackrock Clinic a few months ago.


  • #220
    ladybirdirl
    Registered Users, Registered Users 2 Posts: 1,165 ✭✭✭ladybirdirl


    Hi All,

    So I'm guessing some of you went to the ISCC open day Saturday?

    I went along & found it to be very poor tbh.

    It might have proved very useful for someone newly diagnosed but I heard nothing that I hadn't heard before or didn't already know.

    I didn't think the meeting was set up very well or that the group running it was very approachable.

    Anyone got any other thoughts

    Ladybird


  • #221
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    It was a pity the surgeon wasn't able to make it tbh- but it was good to hear the gastroenterologist from JCM. I did think the use of slides and an overhead in a room like that was a little pointless- you couldn't see anything from halfway back the room- and even if you could- just how badly do patients need to see pathology slides? I didn't learn anything new- but I wasn't expecting to.

    It was nice to put faces on some people, and renew old acquaintances with others.

    To be perfectly honest- I think a social gathering where people could sit down and chat with each other might have merit?


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  • #222
    CathyMoran
    Registered Users, Registered Users 2 Posts: 7,458 ✭✭✭CathyMoran


    Hmm, was there with my husband (smccarrick) who has the condition - no, there was nothing new there but I still believe that the society has a valid remit trying to educate doctors about the condition as a lot of doctors seem to originally diagnose people with this (and other gastro-intestinal conditions) with psychiatric conditions. I know that I was accused of having anorexia originally when I had another GI issue, but that is a rant for another day... It was useful seeing other people with the condition.


  • #223
    Ciara D
    Closed Accounts Posts: 14 ✭Ciara D


    Hi,

    To be honest I did not learn anything new at the AGM either and I agree with smccarrick as I think if people sat around and spoke about their own experiences we would probably learn a lot more.

    I do not understand anymore what the remit of the society is, as having Crohn's for 10 years I really do not get them, to spend nothing on advertising to me is a problem - people need to be educated on Crohn's.

    If you were newly diagnosed - where do you go for practical living with Crohn's information????

    If I have a problem I never think of contacting the group at all but I wonder if there brief is more research than support? I think that is the big problem there is no support!

    C


  • #224
    Ciara D
    Closed Accounts Posts: 14 ✭Ciara D


    Hi,

    For those that use facebook we have also set up a page called Crohn's Ireland which is similar to boards.

    All are welcome to join as a another point of information / support on Crohn's

    C


  • #225
    kildareash
    Registered Users Posts: 1,531 ✭✭✭kildareash


    Ciara D wrote: »
    Hi,

    For those that use facebook we have also set up a page called Crohn's Ireland which is similar to boards.

    All are welcome to join as a another point of information / support on Crohn's

    C

    Hi Ciara,

    I can't find that page on facebook.

    Would it be possible to post a link here?

    Regards
    Ashling


  • #226
    Ciara D
    Closed Accounts Posts: 14 ✭Ciara D


    Hi,

    I hope this is the link here:

    http://www.facebook.com/home.php?#/group.php?gid=106491930028&ref=mf

    Talk Soon,
    Ciara


  • #227
    Green Hornet
    Closed Accounts Posts: 3,305 ✭✭✭Green Hornet


    My brother is going up for his second Infliximab injection on Wednesday. I hope it works better than the last (and first one).

    He's been going through hell and I dont think theres any improvement in his condition. If anything he's worse. He's been on a steroid tablet a day + loads of vitamins (Iron, Centrum etc ) and Ensure. The problem is that he gets sick every evening and suffers bad pain in the ileal region. The pain extends to his back and now he's got little spots all over his body as well.

    Could he be allergic to something in the tablets? Is this normal during aggressive treatment?


  • #228
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    Green Hornet wrote: »
    My brother is going up for his second Infliximab injection on Wednesday. I hope it works better than the last (and first one).

    He's been going through hell and I dont think theres any improvement in his condition. If anything he's worse. He's been on a steroid tablet a day + loads of vitamins (Iron, Centrum etc ) and Ensure. The problem is that he gets sick every evening and suffers bad pain in the ileal region. The pain extends to his back and now he's got little spots all over his body as well.

    Could he be allergic to something in the tablets? Is this normal during aggressive treatment?

    He needs to report any unusual reactions to his medication to his consultant. While it could well be an allergic reaction- however it could also be any of a number of different things- he *has* to make sure he keeps his consultant fully appraised of whats happening.


  • #229
    Green Hornet
    Closed Accounts Posts: 3,305 ✭✭✭Green Hornet


    smccarrick wrote: »
    He needs to report any unusual reactions to his medication to his consultant. While it could well be an allergic reaction- however it could also be any of a number of different things- he *has* to make sure he keeps his consultant fully appraised of whats happening.
    Thanks. He fully intends to go through it all in detail. The first time it was all a bit new to him. It's the regularity of the eat/pain/vomit that gets him down the most.


  • #230
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    The Manifesto launch is in Buswells on Monday (the 11th) @ 11AM. Hope to see some of you there! Shane


  • #231
    nerdysal
    Registered Users Posts: 237 ✭✭nerdysal


    Hey Shane
    I'm heading to Buswell's tomorrrow for the manifesto launch. It's my first time to be involved in anything like this so I don't know what to expect! Did you do that questionnaire for the manifesto? I have to say it was absolutely brilliant- it covered EVERYTHING!
    Sal


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  • #232
    ladybirdirl
    Registered Users, Registered Users 2 Posts: 1,165 ✭✭✭ladybirdirl


    Evening all,

    So I went to the Manifesto launch today. It was a little disapointing in that I thought there would be some press there to spread the word but I think it's a huge step in the right direction.

    The speeches made by Trish in terms of living with the disease & Victoria in terms of the manifesto were excellent...gave everyone in the room a very clear picture of what is dealt with.

    Here's hoping it leads to something, particularly some recognition from the Government as IBD as a long term illness


    Anyone who needs more info feel free to pm me

    LB


  • #233
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    I thought the launch was very good. Well done to Patricia for standing up and discussing how Crohn's has affected her- I think everyone in the room could relate to large tracts of her talk. She came across really well.

    One item which popped up- and which I raised several times with the ISCC, most recently at the AGM 2 weekends ago- is the matter of IBD not being recognised on the LTI scheme. The response from the table at that meeting was that the committee does not view it as something tenable to fight for- that it would take a lot of long term lobbying, and the impression I got was that there was a lack of will present, to pursue this. I was thrilled to see it raised today. People might say EUR100 a month isn't too much- but when you factor in regular blood tests, GP visits, Consultant fees, VHI/Quinn/Hibernian etc (and these are purely the medical costs) it adds up very very quickly. It would be a significant gesture for many of us- if the lifelong condition we have, were recognised as such- and the ongoing medication we require, provided in the manner it is for other long term illnesses.

    It was lovely meeting everyone there- sorry I had to run (actually I'm not- I wish I had stay'ed longer- as two root canals testify).......

    See you all soon,

    Shane


  • #234
    nerdysal
    Registered Users Posts: 237 ✭✭nerdysal


    I was well impressed with the manifesto booklet. It's well put together and I think it aptly describes what all of us as crohn's and UC patients feel. It is definitely a step in the right direction as regards the LTI scheme. Something like that will be a lot more powerful than people individually sending letters to local TDs and dept of health.
    I didn't stay for long myself- I sat quietly in the back corner and then legged it afterwards because I was absolutely starving and needed lunch- don't know if anyone else suffers if there routine is upset but my system goes completely out of whack so I had to go!


  • #235
    waterford1988
    Registered Users Posts: 145 ✭✭waterford1988


    Hi guys, need some help here.

    About 4 weeks ago I had my first remicade treatment. Since then however I have been experiencing some terrible diarreha and stomach cramps. My Gp took some blood tests and he results from inflamation markers came back negative. After doing some research he said this diarreha can be an initial side effect to the treatment. I finally managed to get hold of my consultant and he tells me that remicade does not have his side effect and it is most likely the chrons itself. However if this is the case why would the blood tests not have indicated inflamation?

    Im so confused with whats going on with me, im sure the stress of college exams is not helping me either, especially when i'm running to the bathroom about 3 or 4 times per exam.

    Anybody experienced something similar?


  • #236
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hey -

    Blood tests are not diagnostic of active crohns - basically they can still be normal and your crohns can still be active. My inflammatory markers NEVER go up - and I've had some serious inflammation, haemmorages etc going on. I'm saying this because I've had the same difficulties - ongoing symptoms and normal bloods - but you know what when they did get in there with a scope it was and is a different story. They wouldn't diagnose you with crohns without a colonscopy so I don't understand why some doctors insist things are ok after on the basis of a blood test - makes no sense to me! Anyway If you're not feeling well - your doctor needs to take heed and take it on board. It does take a while for remicade to work for some people so maybe ask how long do you need to wait for it to have full effect. Also you can be at risk for infections - so maybe you might need to give a stool sample to your doctor, just to rule it out. Remicade on the other hand can make inflammation heal really quickly so your gut may be adjusting to this - its a bit of a shock to the system - but if the diarrhoea and cramps persist your doctor needs to check it out - persist with him/her. Good luck!! You'll get there but make sure your being herd by your doctor - if you don't feel ok- you dont feel ok & need it checked out.


  • #237
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Oh yea - if your having problems re exams in college - go to your college doctor & ask to be put in sick bay - you're entitled to have extra time as well to go to the toilet & take breaks so the crohn's isnt eating into your exam time.


  • #238
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hiya,

    Iv never written on this before but just reading through this thread is great as I don't know anyone else with crohn's/colitis and it helps so much to hear other people's stories. I've had crohn's for over a year now and haven't managed yet to get it under control with steroids,imuran, and now humira. For anyone heading into finals or exams it is hard to study when you feel so crap and have to go to the bathroom in the middle of the exam several times, but don't give up hope it can be done!!I always had aspirations of getting a first class honors and in the end Crohn's didn't stop me from achieving that. Sometimes I get really down when yet again, you hear your new medication mixture just isn't working for you and I don't know what options I really have left now except maybe surgery, but I just try to remember that I achieved that first even though I was so sick and if I did that I can keep going and doing what I want to do(for the most part anyway!) I just read the manifesto and I thought it was brilliant and so helpful, it's so great to be able to compare your experiences with others and maybe have an idea of what to expect over the coming years.


  • #239
    BrianJD
    Registered Users, Registered Users 2 Posts: 1,098 ✭✭✭BrianJD


    Hi

    I regulary follow this thread so i thought it might be no harm to introduce myself to it. I was diagnosed with Crohns in 1998 when i was 21 so i have gone through many stages of it. I've done all the steriods, 6mp, infliximax (which i became alergic to) and i'm currently using Humira, 1 injection every two weeks. I had one small bowel resection in 2002 and am due to go in for another next week (so theres my summer planned). If anybody has any questions or would like any opinions on any of my treatments, i'd be happy to share.

    Thanks for reading!


  • #240
    LegacyUser
    Registered Users, Registered Users 2 Posts: 166,026 ✭✭✭✭LegacyUser


    Hi Brian -

    I've a question for you! I'm about the same as you re meds at the mo - on humira. What I wanted to ask you is why you got the bowel resection? Because I've got severe ongoing pain at times waking me at night & stopping me doing things during the day I'm taking strong painkillers for it - but at the same time the meds are settling my diarrhoea - i know my cts have thickening of the bowel & there was mention of surgery before - so i guess i'm just wondering if you've any symptoms like mine - Thanks :) And best of luck with the operation - if its any consolation its probably going to rain the whole summer here :)


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  • #241
    divinereef
    Registered Users Posts: 4 ✭divinereef


    just wondering do people know that long tern use of steriods can lead to brittle bones ,,,,,,,,:mad:


  • #242
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    divinereef wrote: »
    just wondering do people know that long tern use of steriods can lead to brittle bones ,,,,,,,,:mad:

    Well aware of it. At my last Dexa scan at St. Vincents (I was scheduled to get them done every 2 years), I was diagnosed with osteoporosis (at 33......)

    Often someone in this situation might be prescribed tablets to try to enhance calcium absorption- often with high doses of Vitamin K (which is why its so dangerous to go over the stated dose).

    There are also other complications possibly resulting from long term steroid use. I wouldn't recommend going on a Google spree looking at all the possibilities though- just because something happens to someone else- does not mean its necessarily going to happen to you.......


  • #243
    BrianJD
    Registered Users, Registered Users 2 Posts: 1,098 ✭✭✭BrianJD


    Unregistered wrote: »
    Hi Brian -

    I've a question for you! I'm about the same as you re meds at the mo - on humira. What I wanted to ask you is why you got the bowel resection? Because I've got severe ongoing pain at times waking me at night & stopping me doing things during the day I'm taking strong painkillers for it - but at the same time the meds are settling my diarrhoea - i know my cts have thickening of the bowel & there was mention of surgery before - so i guess i'm just wondering if you've any symptoms like mine - Thanks :) And best of luck with the operation - if its any consolation its probably going to rain the whole summer here :)

    Hi

    I'm having the resection because i've had 3 bowel obstructions in the last 12 months. I seem to have 2 narrowings in my small bowel and we felt that for peace of mind, i'd get them sorted. It just wasn't suitable having to keep going in to hospital for a few days at a time even though my obstructions were self relvolving. My wife and i really felt we couldn't relax and every twinge had me worried about an obstruction. I've been on Humira for just over a year and i havw found it fantastic. Up until about a month ago all my usual symptoms had cleared up and that why it was so frustrating to keep going to hospital when i had been feeling okay. I originally had the operation in 2002 simply because nothing else would clear up what was a fairly inflamed small bowel. I'm suddenly starting to dread the operation because it's really the first time i have a planned visit to hospital so i have had time to think about it. Sorry i'm rambling. Hope you feel better soon. The operation (if you need it) really isn't too bad and once the first few days are over (in a morphine haze) you will def feel alot better. My doctor feels that by having the operation and a clean slate, then Humira will have a much better chance of preventing a repeat.

    On a sub note, i've recently been to see a Mr Morgan McCourt in CUH and i can honestly say i've never met a more friendly, helpfull and patient surgeon.

    Best of luck


  • #244
    superfear
    Closed Accounts Posts: 50 ✭✭superfear


    guys i suffer from a gastric ulser and im on Nexium at least 1 a day if im lucky, these are very expensive and im just wondering has any1 come accross a better way to treat this??

    cheers


  • #245
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    superfear wrote: »
    guys i suffer from a gastric ulser and im on Nexium at least 1 a day if im lucky, these are very expensive and im just wondering has any1 come accross a better way to treat this??

    cheers

    I take it that you also have Crohns- and have been prescribed the Nexium in conjunction with your regular Crohn's medication? To be honest- a gastric ulcer is a wholly different treatment than regular Crohns (though its not uncommon for Crohn's sufferers to get gastric ulcers). You really need to discuss this with your consultant.


  • #246
    CathyMoran
    Registered Users, Registered Users 2 Posts: 7,458 ✭✭✭CathyMoran


    Hope that no one minds me asking - how often do you get colonoscopies? My husband who has crohns has not had one in over 10 years and he has had LOTS of surgery - he is my life and I worry about him. Thanks.


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  • #247
    Dan133269
    Registered Users, Registered Users 2 Posts: 1,229 ✭✭✭Dan133269


    kildareash wrote: »
    Hi everyone...
    Bad news this week, consultant recommended an operation.

    Quick update:
    OH spent three months in hospital before Christmas.
    All the other remedies didn't work, but Humera seemed to be doing the trick.
    About six weeks ago, he had some symptoms of a flare up. But they'd last for a day or two then he'd feel fine for a few days.
    Anyway, last week, the situation escalated. His GP was worried about the amount of blood he had lost over the weeks, and referred him back down to hosp.
    Hosp booked him for scope the very next day and the consultant rang on Monday with an appointment for this week.

    He basically told him that he's having a bad flare up and recommended he have surgery. However, there doesn't seem to be a sense of urgency. He's organising appointments with stoma nurse and the surgeon. But it will be OH's decision whether he wants to go ahead with it.

    He's 28 years of age, and obviously the prospects of what the operation involves are freaking the hell out of him.
    To me, it kinda feels like the doc is giving up on him or something.
    Reading other posts here, people talk about being on steriods long term.
    Since he came out of hosp, he has had one course of steriods for a week, but he did start to feel a bit better.

    Has anyone looked into alternative treatments?? We're willing to try anything that won't make him worse, but might make him feel better.

    Also, we're thinking about getting a second opinion. Currently, he's under Dr Courteney in Kilkenny, which we have heard great things about, and can't fault him to date. But I don't think it would do any harm to speak to someone else. Any recommendations??

    Finally, many of the previous posters have had operations, would you mind sharing your experiences of life after the op with us?
    We've tried to do our own research on the net, but I'm so cautious about it because it can throw up anything. But there doesn't seem to be much information from an irish point of view.

    Any help would be really appreciated.

    Hello, I hope you're oh is doing better now, if you are in Kilkenny, if travelling to Waterford isn't too far for you I would recommend Dr.Kevin Ward at Waterford Regional Hospital.
    waterford1988 wrote: »
    Hi guys, need some help here.

    About 4 weeks ago I had my first remicade treatment. Since then however I have been experiencing some terrible diarreha and stomach cramps. My Gp took some blood tests and he results from inflamation markers came back negative. After doing some research he said this diarreha can be an initial side effect to the treatment. I finally managed to get hold of my consultant and he tells me that remicade does not have his side effect and it is most likely the chrons itself. However if this is the case why would the blood tests not have indicated inflamation?

    Im so confused with whats going on with me, im sure the stress of college exams is not helping me either, especially when i'm running to the bathroom about 3 or 4 times per exam.

    Anybody experienced something similar?

    I'd say the same to yourself waterford1988, Kevin Ward in WRH is excellent in my opinion, knowledgeable, thorough and understanding. I asked him lots of detailed questions and always felt re-assured and in good hands, there's nothing worse than a brusque and dismissive doctor when it comes to something as individual as crohn's disease or indeed any medical condition.

    I had 40 cm of my ileum removed in January at the recommendation of Dr.Kevin Ward, the operation was carried out by Mr.Hugo Prins at WRH who also struck me as very competent and I was completely re-assured. Since then I've been pretty much back to full health, still get a bit of diarrhea now and again but no pain and no tiredness or sign of a flare up. My scar is less than 5 inches, barely noticeable and doesn't affect me at all. I'm back lifting weights and exercising and having a few (or many) drinks at the weekend. Hopefully this will continue and for the meantime at least the surgery was the solution, hope this will bring some solace and comfort to others who are worried about it.

    How is your health at the mo smcarrick?

    I'm sure most of you are aware of www.crohnscolitis.ie but just in case check it out seems to be a lot of information on there


  • #248
    superfear
    Closed Accounts Posts: 50 ✭✭superfear


    yes i have crohns too. Ive been to my consultant many times over this and he keeps prescribing me the Nexium, and says i will more than likely be on them for the rest of my life. They are very expensive and can not be good to be taking so many.


  • #249
    The_Conductor
    Moderators, Society & Culture Moderators Posts: 32,285 Mod ✭✭✭✭The_Conductor


    superfear wrote: »
    yes i have crohns too. Ive been to my consultant many times over this and he keeps prescribing me the Nexium, and says i will more than likely be on them for the rest of my life. They are very expensive and can not be good to be taking so many.

    I would suggest discussing this further with your consultant- and being forthright and open with him. If you're not happy to continue to take the particular course of medication he is prescribing- tell him that- don't beat around the bush. There are other options. Different doctors and specialists may have a lot of experience in the use of particular medications- which is why he/she may be advocating this for you- but while it is a recommendation- you can just as soon state that you are unhappy with it- and what are the alternates.

    If you're not happy with the potential long term effects of medication- you have discussed this with your consultant and are still unhappy- along with being a patient, you are also a consumer and it is your prerogative to switch to another consultant should you so wish. There are many very very good gastroenterologists practicing in this field.


  • #250
    superfear
    Closed Accounts Posts: 50 ✭✭superfear


    thanks for the advise. i think i may have to change my consultant because there has been no budge on this matter


  • #251
    ncmc
    Registered Users, Registered Users 2 Posts: 4,852 ✭✭✭ncmc


    BrianJD wrote: »
    Hi

    I'm having the resection because i've had 3 bowel obstructions in the last 12 months. I seem to have 2 narrowings in my small bowel and we felt that for peace of mind, i'd have to get them sorted. It just wasn't suitable having to keep going in to hospital for a few days at a time even though my obstructions were self resolving. My wife and i really felt we couldn't relax and every twinge had me worried about an obstruction. I've been on Humira for just over a year and i havw found it fantastic. Up until about a month ago all my usual symptoms had cleared up and that why it was so frustrating to keep going to hospital when i had been feeling okay. I originally had the operation in 2002 simply because nothing else would clear up what was a fairly inflamed small bowel. I'm suddenly starting to dread the operation because it's really the first time i have a planned visit to hospital so i have had time to think about it. Sorry i'm rambling. Hope you feel better soon. The operation (if you need it) really isn't too bad and once the first few days are over (in a morphine haze) you will def feel alot better. My doctor feels that by having the operation and a clean slate, then Humira will have a much better chance of preventing a repeat.

    On a sub note, i've recently been to see a Mr Morgan McCourt in CUH and i can honestly say i've never met a more friendly, helpfull and patient surgeon.

    Best of luck

    Hi all, I'm BrianJD's wife, he was due to get his resection today and we had spent weeks psyching ourselves up for it, booking the time off work, tentatively planning and hoping for a few years Crohns free. Well, he had to be admitted on Tuesday with severe diarrhea, shakes and pain. Turns out he now has colitis in his colon in addition to the strictures in his small bowel. The surgeon was unwilling to operate while he was suffering from a flare up. So now he is back on Humira and has been prescribed Asacolon. We both feel gutted as we feel we are back to square 1 with it.

    He can deal with the pain and the diarrhea, it is the constant threat of blockages that he finds hard to deal with. We are too paranoid and nervous to plan anything and it looks like we will have to cancel our planned holiday to Florida in August.

    Neither of is are sure of the implications of the colitis in the bowel, he never had it in this area before, we aren't sure if this is something to be worried about or not. The docs in the hospital just seem to want to dash in and out as quickley as possible and are very hard to pin down to get any answers.

    On another note, I was feeling really sorry for myself this morning and thinking that no-one had things as hard as us! Well, a short while spent reading this topic is a sobering thing and it has made me realise how bad some people suffer and how lucky Brian is in that he doesn't have it much worse. Thanks to all the people who have shared their experiences, the scary thing is, I have learnt more on here this afternoon than from all the docs that have been in with Brian!


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