Crohn's Disease

The_Conductor · 20-03-2008 7:58pm

nerdysal wrote: »

Hey I was just wondering do any of you suffer from joint problems as a result of the crohns? I had to go to physio because of my back and I'll probably have to go back with my hip. Everytime I run my hip kind of stops working and I fall flat on my face.
Anyone else suffer with this or anything similar?

I have to get an annual Dexa bone density scan (thanks to 15 years of cortisone use). I've broken bones all over the place- and while I do have a worrying low density spinal column- my jaw, ankles, knees, wrists and fingers are more of a problem. I've been prescribed Vitamin K and Calcium which I'm supposed to take a few of every morning- they taste vile though- if anyone had any suggestions for a better way of bulking up their calcium intake I'd be grateful. (Obviously the Vitamin K can cause liver problems etc- which is also an additional worry.......)

nerdysal · 23-03-2008 9:58am

WOW! You have a lot more trouble than me!!! It's not the bones that I have the trouble with it's more the muscles and that around the joints I think! I had a DXA scan last year and apparantly I have bones like cement. That's down to the 2 litres or more of milk I drink a day!! Thankfully I'm not one of the many crohn's sufferers who are lactose intolerant. I don't know what I'd do if I was!!! I was only on steroids for a month and then I had a near fatal reaction to them so I can't ever go on them again. But I'm glad about that!

gaffmaster · 03-04-2008 5:00pm

hmmmmm a Crohn's thread aaayyyeeeee???

I have that!

Since 2002. Total remision now. thanks to infliximab (off it now), puri nethol (coming off it in october) and asa colon (on it forever).

Hope you are all enjoying good health. Getting crohn's changed my perspective on life completely. I never stress about anything anymore.

Nerd - great that you don't give a poop about your leaving cert. Pretty much everyone i know is doing something completely different to what they thought they wanted to do when they were 17. the leaving cert is so far from the be all and end all that the system makes it out to be. Enjoy your last year in school man!

mad_fish · 06-08-2008 8:00pm

Hey realise this is an old thread but really heartening to hear so many people dealing with crohns and getting on with their lives.

Was diagnosed with it myself a year back, am very lucky in a way as my dad has had crohns for close on 20 years and seen the signs before it got too bad, Am on the imuran nearly 3 months and has started to kick in, so feeling much better than I have in several months!

As everyone else who has this knows, reacting to your symptoms quickly can help, the sooner you get on meds the less damage is done to your system, though i know a good doctor helps too ( my dad went undiagnosed for several years, i managed to get scoped about 3 weeks after i went to the doctor).

My 2 cents on crohns is always take your meds, try and listen to your doc about the treatments, no matter how scary they sound, and look to your friends and family for support, it makes the disease and all the crap that goes with it a lot easier to deal with!

ladybirdirl · 12-08-2008 8:56pm

OMG guys, can't believe so many of the population on here have Crohn's

I'm only a year into my diagnosis..tried the Pentasa, nearly killed me.Can manage the Asacolon tho which is weird.

I can't pin down any foods but am trying the homepathy route as I don't tolerate meds well

I agree that it does force you to think about where your priorities lie...has anyone changed job( I think smcarrick you mentioned you did)to find something to work around when you're ill. my question is how has it been since you made that decision

Ladybird

The_Conductor · 13-08-2008 7:19am

ladybirdirl wrote: »

I agree that it does force you to think about where your priorities lie...has anyone changed job( I think smcarrick you mentioned you did)to find something to work around when you're ill. my question is how has it been since you made that decision

Ladybird

Yes- I was techspec in an American company which will remain nameless, and the stress of the job was slowly killing me. I took a pretty big paycut to take a job in the civil service. Everyone said I was insane at the time- but its a nice job, working with colleagues who I get on with, very varied work, it has travel involved, and I get to use my qualifications (IT, Finance and Forestry). If I'm sick, I'm sick, and not expected to try to kill myself (though I have ended up in official meetings in Brussels and Rome hoping that I wouldn't actually collapse).

Money isn't everything by a long shot- your health and your sanity should rate far higher on the scale than most people give them credit for..........

ladybirdirl · 13-08-2008 1:02pm

Thanks smccarrick, I'm coming to that conclusion:)

Even though I work for a bank & they have been good, I do think all the cr*p that goes with some office jobs can exacerbate illnesses like Crohn's. I also find that I tend to keep trying to stay in the routine & in fact that makes me worse:rolleyes:
I also get the 1 day bugs & the headaches...man I turn into a raving lunatic! I'm trying to get up the courage for the bone density scan.Has anyone else has the B12 trouble? I just cannot get my body to product B12 & I get sooo fatigued it's just not funny

Ladybird

The_Conductor · 13-08-2008 2:05pm

Yes- I get regular Neocytamen injections (my GP showed me how to do the injections and let me practice on an orange till she was happy for me to do them myself). Re: the dexa bone density scan- its something that any of us who have been long term users of steroids should get done frequently.

Re: regular bugs- the Imuran and some of the other medications leave you open to these- its unfortunate. I also get really incredibly bad headaches- and frequent 1 day vomitting bugs. My Crohn's consultant has made an appointment for me with a neurologist- not 100% sure what the story is with it.......

ladybirdirl · 13-08-2008 2:54pm

I am soo behind on all this obviously

My G.P. isn't the mae west tbh, she does the injections for a few weeks then takes bloods every few months & starts again, all very haphazard. Hmm....must look into getting them myself

I dont' take Imuran, lots of asacolon & prednisolone & entercort. Actually to be fair my consultant is fantastic.. Prof O'Morain, works out of Tallaght. I had been with Vincent's & found O'Donoghue a pain & not very good. Different strokes for different folks I guess, lots find him very good.

Has anyone been down the road of taking anti depressants for crohn's.... lots of the consultants & GP's want to prescribe it, apaprently it relaxes the CNS but I'm not convinced.

TO anyone just diagnosed I would say hang in there.. & thanks everyone (smcarrick) the info on here has been re-assuring & interesting

LB

nerdysal · 15-08-2008 7:25pm

I'm 18 and have had crohn's since I was 15. I know it's not the same as a job but I have decided to do a college course way below the points that I achieved. It's a small college and a lovely course... I don't see the point in spending another 3 years stressing over exams. The last week waiting for the results nearly killed me!

Prof O' Donoghue- He is my consultant and I couldn't have asked for better. He has been absolutely brilliant! He had the sense to insist on operating on me last November rather than to wait and see... I found out after the operation that my crohn's would probably have caused me to be seriously hospitalised months later (they had to remove a foot of my ileum!!). But you're right different strokes for different folks. Although I have to say you're the first person I have ever heard say that!!! He's the most sought after Gastroenteroligist in the country!

E.T. · 22-08-2008 12:36pm

Is there anyone here who has mild Crohn's? I nearly feel bad posting after reading all the posts above, but at the moment I'm having a mild flare up for the past 6 months (mild pain ALL the time, running to the loo a good bit, backache, fatigue). I'm on Asacolon 1600mg a day, and had a 3 month course of entocort and still feel wrecked. Are there any other options for mild cases? Not due to see my specialist til the end of next month, went to my GP the other day and he said he couldn't do anything or change my meds, that I'd be better off leaving it til I see the consultant.

ladybirdirl · 22-08-2008 5:30pm

E.T. I've done the asacolon & entercort route...my last flare up was like that.
You might ask your GP to check your B12..that might be low & causing the fatigue!
Not many other options I can think of, I'm starting reflexology, apparently it helps

silversurfer · 19-09-2008 12:04am

there'a good resource forum called 'healingwell', looke like it's located in USA.
They have forums for loads of illnesses and one of them is Crohns.

I've been officially diagnosed over 3 years now.

I was diagnosed mid 2005 with Crohns Disease after a Colonoscopy and half a year
of hell.
I had to get another colonoscopy January 2006 as things were not improving AT
ALL.
And it turned out there was no improvement in the crohns.
All I had been given was Pentasa and the steroid tablets (deltacortril), so the inflamation and bld was stopped, but the running to the jacks several times a day and the pains etc... was still a daily occurance

Since then I was given imuran tablets (immune system suppressant)
which caused severe nausea, I could hardly keep anything down, and the
thought of any food was a complete turn off.
So they added Maxolon tablets (anti nausea) to the mix.
Two weeks later I had to phone the specialist and tell him I was stopping the imuran, as I had nausea and extreme tiredness. I was walking around like a zombie, completly exhaused and never fully alert.
I have to point out, I was told this was an unusual reaction to Imuran.

I had a bone density scan and was confirmed with Osteopenia, due to all the steroids (in one 52 week period, 1 year, I was on the steroids for over 36 weeks)
[Osteopenia is the term used for bones that have become somewhat less dense than normal,
but not as severe as in osteoporosis. A person with osteopenia is at risk for getting
osteoporosis in later life].
So I was put on Osteofos D3 sachets (Calcium and Vit D3 supplements) and a once weekly
Foxamax Calicum absorber to help with the bones.
These days I take Ideos chewable tablets (Calcium and Vit D3) daily and the fosamax weekly

I was off the Imuran and Maxolon, not even two days, and felt pretty good. Of course the Crohns was still there.
Next were steroid injections (into the vein) to stop the Crohns and finally get it under control?

Next I started Methotrexate 15mg (2.5mg x 6), once weekly and folic acid (to keep white blood cells in order and reduce side effects).

Since then I was on Remicade infusions in the Hospital, these take about two hours for the actual infusion and lots of waiting
I started these in Feb 07

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

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

Asked doctor about stopping the methotrexate after my 4th or 5th infusion (1 infusion every two months) as my wife and I were thinking about having another child and this is too dangerous for the child with the DNA altering methotrexate.
I've been on the methotrexate for 16 months at this stage.

So I went off the methotrexate sept 07
Looks like the methotrexate is out of your system in about a month, but the DNA damage is not corrected for about 6 months after you stop.

So january 08, developed antibodies to Remicade and developed Arthritis, probably as a result of this, but I never got a really clear answer on this.
So am now off the remicade, after 6 infusions, and crohns is getting worse again.

Had to go back on the Methotrexate in Feb 2008.

Unable to change to Humira until antibodies are gone and definately can't go back on Remicade at the moment.

It's now Sept 2008, I've switched specialist and after DNA results and several consults, Have been told I could go on Remicade again or Huimra, but my Rheumatologist (for the crohns arthritis), has strongly suggested not to go back on the Remicade.

I chose to try the Humira, and avoid the complications of antibodies and days off work to get the infusion.

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

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

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

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

So I'm feeling reasonable, but too soon to tell yet.
Should hopefully only take a few weeks to kick in.

MORISH · 20-10-2008 6:27pm

Hi all, just found this thread and am a fellow chron's sufferer

I have had chron's for 13 years now, in the beginning i was on pentasa and zoton which managed to keep me reasonably healthy although as a college student at the time i wasn't really taking as good care of myself as i should have been.

Then about 3 years ago i had a very bad flare up and ended up having a ileoceacal resection, unfortunatly that didn't go quiet as smoothly as i hoped and i ended up with a abdominal fistula for 1 year, when i first had the fistula i was hospitilised on TPN ( feeding directly into the bloodstream) and then i was on elemental 028 a liquid food formula for another 4 weeks after the TPN i begged my surgeon to stop it as i was starving which i took to be a good sign. But alas the fistual continued and i started infliximab had 3 sessions in total and the fistula closed but reopened after 3 months, so i ended up having a second surgery exactly 1 yr later to close the fistula, which thankfully has stayed closed.

I have remained mostly well since the second surgery but a few flar-ups that have been treated with entocort with good response most of the time. Some of you have had Dexa scans and investigation for bone density, i have never been offered or investigated like this, although i suffer from joint and bone pain continously, maybe i need to get this looked at. I also broke my foot quite easily last year, luckily i only had prednisolone on 3/4 different occasions.

Unfortunalty Dec 07 i started to feel unwell but only in minor ways, had another colonoscopy (i HATE picolax)!! and it showed some recurrence and then at the beginning of this year i was started on cellcept, i was just wondering if anyone else has ever been started on this drug.It's usually used in post transplant treatment. I haven't been as well this year as i would have liked, ended up with lots of small infections, and at one stage i had such pain they investigated me for gallbladder problems but it was negative. For last month i'v been off work and on entocort again!! This disease can be a real life stopper. So if anyone else is on cellcept i'd love to hear from you, as i'm wondering if its really a treatment that works or is just giving me more complications than the chron's itself.

nerdysal · 13-11-2008 11:01am

I'm going to pull my hair out... I feel so so so well but yet my blood tests show that my protein is ridiculously low at 15, I'm anaemic and they are also showing inflammation. It's so frustrating! I had a colonoscopy on Tuesday and they found some crohn's in the large bowel :mad:. Also, I have to have a biopsy under an anesthetic because I might have a fistulae which might be caused by my medication which took my docs ages to find :mad:

I'm sorry I'm just so annoyed...

byhookorbycrook · 13-11-2008 2:40pm

is anyone taking Tysabri for Crohns?Am starting it for MS but a friend with Crohns is looking into it for himself

MORISH · 13-11-2008 6:27pm

nerdsayl I know how you feel, i had a fistuala after my 1st surgery and it's earth shattering, especially if your feeling ok. What medication are you taking that could cause it? My cousin had a fistuala last year he didn't even know he had chron's until it appeared. Your unlucky with your protien too, 15 is very low, but its not anything your doing it's just this fecking disease!!

I'v been off work for ages now, had scans on mon so am waiting for results, but i'm finding it very hard to swallow and my mouth has ulcers too, so i'm really fed up and with christmas around the corner its worse with all the lovely food, and i dont feel like any of it.

I share in your frustration!

By the way if there are is anyone out there who is thinking of buying a house, i am 30 and have just bought my first home and had major problems getting life assurance, so i know it might not be something you think about when your younger but if you have chron's it is worth trying to get it when your younger and hopefully at a healthy stage in the disease. Cos i'v had my trouble with chron's but from what i'v read on this thred there are people who have it worse than me. Just a thought. I did get it in the end with canada life and i have just been approved to upping the amount so that when i move to a bigger house the life assurance is there to cover it, so i dont have to go through the whole rejection process again.

MORISH · 14-11-2008 2:01pm

Just found out the results of my scans and the chron's is affecting my small bowel as well as where i had my bowel resection, so it looks like i'll be going on the wonder drug infliximab, at least i know it works and will hopefully be back to good health by the new year.

MORISH · 18-11-2008 11:22pm

I went to my consultant today and i have to start on humira injections,
Silversurfer how are you getting on with them since you started, have you noticed your chron's improve. How long did it take to start to feel better?

nerdysal · 19-11-2008 2:02pm

I was on Humira injections! Unfortunetly, my crohn's had got to a stage that couldn't be dealt with medically so I was handed over to surgery. But while I was on the Humira I did feel significantly better... if my crohn's got bad again I would ask my Doc to prescribe them!!!

Dan133269 · 21-11-2008 3:54pm

Hello all, good thread, fellow crohn's disease sufferer here, fresh out of hospital

Generally I have it mild I must admit, although when I get a flare up there's nothing mild about it. I'd like to ask everyone else, how would you describe the pain from the cramps? I saw a documentary once and remember a doctor saying that as pain from illness goes, the cramps from crohn's disease are up there with the worst of the pains from different conditions. If I had to put it succinctly, I'd say the pain is unimaginably excruciating, without question the worst pain I've ever experienced

The_Conductor · 21-11-2008 3:59pm

Dan133269 wrote: »

Hello all, good thread, fellow crohn's disease sufferer here, fresh out of hospital
Generally I have it mild I must admit, although when I get a flare up there's nothing mild about it. I'd like to ask everyone else, how would you describe the pain from the cramps? I saw a documentary once and remember a doctor saying that as pain from illness goes, the cramps from crohn's disease are up there with the worst of the pains from different conditions. If I had to put it succinctly, I'd say the pain is unimaginably excruciating, without question the worst pain I've ever experienced

I've broken my arm, my collar bone, my nose and my multiple spiral fractures of my leg (at different stages). I've also gone around with an abscess in my jaw for over 2 weeks. The abdominal pain from Crohn's is a lot more severe than any of those....... On occasion I can't stand up straight, put a safety belt on in the car, or wear clothes that exert any pressure whatsoever on my stomach- on other occasions- I've resorted to crawling to get out of bed. Dressing yourself can take 20-30 minutes- putting your arms up to put on a jacket can hurt as much as anything else.......

Yes- it can be excrutiating.

Dan133269 · 21-11-2008 4:14pm

smccarrick wrote: »

I've broken my arm, my collar bone, my nose and my multiple spiral fractures of my leg (at different stages). I've also gone around with an abscess in my jaw for over 2 weeks. The abdominal pain from Crohn's is a lot more severe than any of those....... On occasion I can't stand up straight, put a safety belt on in the car, or wear clothes that exert any pressure whatsoever on my stomach- on other occasions- I've resorted to crawling to get out of bed. Dressing yourself can take 20-30 minutes- putting your arms up to put on a jacket can hurt as much as anything else.......

Yes- it can be excrutiating.

jesus buddy mine has never been that bad. the cramps for me last about 20-30 seconds, it's like a tightening in my stomach, it reaches its tightest point after about 15 seconds, maybe holds it there for few seconds, and then releases slowly. Now during that 30 seconds I can't do anything, except maybe rock back and forth or roll around to try and deal with the pain. Do your cramps last longer? Worst pain I have to compare my cramps with are being punched in the face from half decent boxers, sore but not as bad as crohn's

The_Conductor · 21-11-2008 4:23pm

Dan133269 wrote: »

jesus buddy mine has never been that bad. the cramps for me last about 20-30 seconds, it's like a tightening in my stomach, it reaches its tightest point after about 15 seconds, maybe holds it there for few seconds, and then releases slowly. Now during that 30 seconds I can't do anything, except maybe rock back and forth or roll around to try and deal with the pain. Do your cramps last longer? Worst pain I have to compare my cramps with are being punched in the face from half decent boxers, sore but not as bad as crohn's

It really depends on what I'm trying to do- but somethings can be totally no-go (such as trying to walk straightened- I got used to walking with a stoop). When its really bad- I could be lying down in pain for days at an end- often even unable to sip fluid (I ended up in casualty a few times with severe dehydration).

Even worse than the pain- is the extreme lethargy- never having the energy to do even simple things- sometimes not even having sufficient energy to read or watch television. I used to curl up into a ball in bed to keep warm and have a radio under the pillow- BBC Radio 4 and the World Service were about all that had anything worth listening to in the early hours of the morning. It used to be such a relief when day started to break again- and you could hear people going about their daily business again.

One unusual thing I noticed is big problems with temperature regulation? Not sure if others have encountered this. It often is nothing out of the ordinary for me to going around with a temperature of 101-102- or indeed the other direction- freezing cold at 94-95? I used to try to sleep against the outside wall- to keep myself cool- or other times I used put on as many clothes as possible to try to keep warm......??

Dan133269 · 21-11-2008 4:28pm

smccarrick wrote: »

It really depends on what I'm trying to do- but somethings can be totally no-go (such as trying to walk straightened- I got used to walking with a stoop). When its really bad- I could be lying down in pain for days at an end- often even unable to sip fluid (I ended up in casualty a few times with severe dehydration).

Even worse than the pain- is the extreme lethargy- never having the energy to do even simple things- sometimes not even having sufficient energy to read or watch television. I used to curl up into a ball in bed to keep warm and have a radio under the pillow- BBC Radio 4 and the World Service were about all that had anything worth listening to in the early hours of the morning. It used to be such a relief when day started to break again- and you could hear people going about their daily business again.

One unusual thing I noticed is big problems with temperature regulation? Not sure if others have encountered this. It often is nothing out of the ordinary for me to going around with a temperature of 101-102- or indeed the other direction- freezing cold at 94-95? I used to try to sleep against the outside wall- to keep myself cool- or other times I used put on as many clothes as possible to try to keep warm......??

Life is a pigsty man. how are you health wise now?
Never really got fluctuating temperatures myself, although do get profuse sweating sometimes in bed, and not from having some funky time.

The_Conductor · 21-11-2008 4:31pm

Dan133269 wrote: »

Life is a pigsty man. how are you health wise now?
Never really got fluctuating temperatures myself, although do get profuse sweating sometimes in bed, and not from having some funky time.

Lots better since the last time I've had surgery (I've had surgery 4 times thus far.) Often I might be slightly under the weather and feel so guilty about not being up to going out, or driving my wife somewhere etc......

CathyMoran · 21-11-2008 7:23pm

Im the wife here _ he is just a very loyal husband and was the best carer in the world when i got ill> for the first five years of being with him i took all my holidays spending time with him when he was sick but he has been a lot better of late> he is just off cortizone> Dermot o donoghue has been an amazing doctor for both us (i also had to attend him)>

nerdysal · 21-11-2008 8:05pm

Re: Temps. I have constant high temps when I have a flare up but while my temp stays really high I feel really really cold and shiver all the time!

Re: Pains. Crohn's pains would last for about 10 mins with me. I would have to stop what I'm doing and curl up in a ball and generally, cry my little eyes out. But while crohn's pains are bad, nothing beats the pain I suffered with pancreatitis which was so bad I was practically delirious!

MORISH · 24-11-2008 11:19am

Dan133269 wrote: »

Hello all, good thread, fellow crohn's disease sufferer here, fresh out of hospital
Generally I have it mild I must admit, although when I get a flare up there's nothing mild about it. I'd like to ask everyone else, how would you describe the pain from the cramps? I saw a documentary once and remember a doctor saying that as pain from illness goes, the cramps from crohn's disease are up there with the worst of the pains from different conditions. If I had to put it succinctly, I'd say the pain is unimaginably excruciating, without question the worst pain I've ever experienced

I'v heard the pain discribed as adult colic, as i work in the medical field i guess the best way to describe it to others is like severe abdominal cramping with trapped wind thrown in for good measure but as a suffferer who is currently going through a long flar up it comes no where near the real thing, pain is known to be one of the hardest things to describe and we learn that "pain is what the patient says it is".

My chron's pain can last from anything from a few seconds to half an hour, but when its a bad day it will be there in waves all day/night. Again i too have mild fevers when unwell and night sweats, its all part of it!! I can just about cope with the fever and abdominal pain for me i get so much joint pain, hands,feet and now my hips. It got so bad at one point durning my current flar up that i couldn't roll over in bed and when i fell asleep the pain and stiffness i suffered was awful, and yeah it would take me about 15-20 min to get dressed in the morning aswell.

Dan133269 · 02-12-2008 3:04am

CathyMoran wrote: »

Im the wife here _ he is just a very loyal husband and was the best carer in the world when i got ill> for the first five years of being with him i took all my holidays spending time with him when he was sick but he has been a lot better of late> he is just off cortizone> Dermot o donoghue has been an amazing doctor for both us (i also had to attend him)>

That's nice, nothing like having someone there for you in times of need, really does make everything so much easier

think we're lucky as well in having good doctors, I couldn't really fault any of mine I've had.

nerdysal wrote: »

Re: Temps. I have constant high temps when I have a flare up but while my temp stays really high I feel really really cold and shiver all the time!

Re: Pains. Crohn's pains would last for about 10 mins with me. I would have to stop what I'm doing and curl up in a ball and generally, cry my little eyes out. But while crohn's pains are bad, nothing beats the pain I suffered with pancreatitis which was so bad I was practically delirious!

sorry to hear that, how would you rate the pain of crohn's and pancreatitis out of 10? how are you now by the way?

MORISH wrote: »

I'v heard the pain discribed as adult colic, as i work in the medical field i guess the best way to describe it to others is like severe abdominal cramping with trapped wind thrown in for good measure but as a suffferer who is currently going through a long flar up it comes no where near the real thing, pain is known to be one of the hardest things to describe and we learn that "pain is what the patient says it is".

My chron's pain can last from anything from a few seconds to half an hour, but when its a bad day it will be there in waves all day/night. Again i too have mild fevers when unwell and night sweats, its all part of it!! I can just about cope with the fever and abdominal pain for me i get so much joint pain, hands,feet and now my hips. It got so bad at one point durning my current flar up that i couldn't roll over in bed and when i fell asleep the pain and stiffness i suffered was awful, and yeah it would take me about 15-20 min to get dressed in the morning aswell.

How's your health now? Hope you're doing better.
I've recently read that peppermint oil tablets are meant to be very good in dire times to help with transition through the intestines and with cramping. I'm gonna give them a try, anyone have any experience with them?

Also on a more serious note, I've read that sufferers of crohn's have a higher risk of bowel cancer which isn't very comforting. Does anyone know of anyone who got cancer after already having crohn's or spoke to their doctor about this?

nerdysal · 02-12-2008 9:50pm

Hey Dan!

I would say crohn's is about 6-7 out of 10 but pancreatitis is a massive 10 out of 10! I'm not being a moan or anything... it truly is the most horrendous pain I have ever suffered! I can't imagine anything worse than it!
I'm ok at the moment... I'm struggling a bit with the iron and the protein levels! On loads of nutritional supplements at the moment!

MORISH · 03-12-2008 12:56am

Dan133269 wrote: »

That's nice, nothing like having someone there for you in times of need, really does make everything so much easier think we're lucky as well in having good doctors, I couldn't really fault any of mine I've had.

sorry to hear that, how would you rate the pain of crohn's and pancreatitis out of 10? how are you now by the way?

How's your health now? Hope you're doing better.
I've recently read that peppermint oil tablets are meant to be very good in dire times to help with transition through the intestines and with cramping. I'm gonna give them a try, anyone have any experience with them?

Also on a more serious note, I've read that sufferers of crohn's have a higher risk of bowel cancer which isn't very comforting. Does anyone know of anyone who got cancer after already having crohn's or spoke to their doctor about this?

Yeah i use peppermint tea a lot even when my chron's isn't a problem, but cant take capsules as the wax on the capsules repeats on me something rotten.
Got my 1st set of humira injections last week, the nurse said it could take a few weeks to see improvement, but i stopped cellcept last week and am already feeling a bit better i had my concerns with that medication all along, but i'm sure it was keeping the chron's at bay for a while anyway.

How are you guys getting on?

Nerdysal how are you? are they giving you treatment for the fistula?

Dan1333269 how are you since you got out of hospital?

nerdysal · 04-12-2008 10:30am

Morish

Yeah, I went into hospital last week for a minor surgery so all is good again! Thankfully they said that the tract leading from the fistula wasn't very long and that it should close up soon. They also said they didn't think it was my medication that caused it(thank God- really don't wanna change it).
I was also talking to my dietician while I was in there. I've been put on some nutritional supplements. Fresubin Protein Energy (which I've had many times before and I find excellent) and also Pro-Cal shot... I'm not sure about the latter. I took some on Tuesday and didn't feel right all day and then I didn't take any yesterday and I felt fine. I might try some today and if I feel in anyway funny I'm not taking anymore. I'm trying to gain weight and even though that yoke it full of calories it's not helping me because it's preventing me from eating proper food!

Sal

MORISH · 05-12-2008 4:51pm

nerdysal

Glad that they think the fistula wasn't from the medication, cos if the meds are suiting you i can see why you would be reluctant to taken off them. If the Pro-Cal is making you feel even slightly unwell then i would ring your dietician and see if you could change to calogen might not be as many calories but it's better than not taking anything, especially if your battling with your weigh gain and low protien.

Your right that humira stuff seems great!! I'm already on the mend and back cooking and baking which is my sign of being back to normal, and just in time for the silly season too but i'll take care of myself and hopefully this flar up is nearly over.

Happy Christmas to you all, and i wish you all good health.

Colmm23 · 09-12-2008 1:48pm

hey Folks,

I've been watching this forum for a while now and feel the need to share my story with yee in return for some support.
I was diagnosed with chrons a month ago but my problems go back as far as june when I was referred for a scope by my GP with a suspected stomach ulcer. The scope was done and inflammed ulcer was confirmed, it was restricting the flow of food from my stomach, so went on medication to reduce the inflammation but didnt work and I wound up been admitted to hospital 10 days later. Tried dilating the blockage but didnt work, so the surgeons entered.
My surgeon planned on removing the inflammed section at the outlet of my stomach and reattaching the ends again but alas more complication. When he got a good look inside it was inflammed so much that he felt it was dangerous to try cut it out because of its proximity to my pancreas e.t.c. He proceeded to do a gastric bypass, he also removed my appendix and a small piece of my large intestine, just for good measure!!
I spent 13 days in ICU after this op on TPN, terrible experience. Nurses were excellent though.
Was realeased from hospital a few days later but ended up in A&E about a month later with the pains that yee have talking about and OMG they were crippling I actually could not get out of the bed and the ambulance had to be called to bring me, pain can not be described it was that bad.
Painkillers and antibiotics were subcriped and I was kept for a fortnight in hospital to allow inflammation to settle again. Realised form hospital and ended up back again in 6 days, not as bad this time because I felt it coming at an earlier stage.
Was put on an elemental diet at this stage and I asked for a second opinion so I was referred to St James under Dr Mahmud, (anyone else under him?).
Scopes were done here again and biopsies taken along with CT scans to try and determine exactly what was causing all this grief. The result after a lot consulting between doctors and surgeons it was confirmed as chrons.
I was supposed to start on infliximab but to top it all off an abdominal fistula appeared so that put a stop to infliximab, cant have any infections when your starting on infliximab it seems.
After six weeks in hospital(this time) I was allowed home(out a month now) and Have been on a semi elemental diet(peptamen) for the last 6 weeks, absolute torture, to allow fistula close up and it seems to be working. Have one week left now before I go back to the clinic and hopefully will get to start proper treatment to settle this chrons.
I am very nervous though after all this to go back eating food incase it all takes off again, anyone else felt this way??

Currently on Pentasa, Imuran, Ciproxin and Flagyl but these are just to control the fistula I think, am I right?
I have also lost over 2 stone in weight and feel terrible about how skinny I am, will the weight come back??

Anyone with news that will lift my spirits please reply because to go from a healthy 28 yr old guy playing sport to a skinny sick person that I am now is cripling for me like I imagine it is for most people.:(

The_Conductor · 09-12-2008 1:54pm

Colm- sorry to hear your story.
What I always found was once I recovered from a flareup (which could last weeks, or even months) that I ate rings around me- and with much better energy levels felt a lot more capable of doing sports again (canoeing was my thing)- and after a few weeks had regained a lot of the muscle mass and weight that I had lost. Note: a lot of the weight loss is actually muscle, not fat..... Its something to keep in mind as you recover.

S.

Colmm23 · 09-12-2008 2:43pm

Thanks S.

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

colm

The_Conductor · 09-12-2008 2:52pm

Colmm23 wrote: »

but at least I've no fear of been poisoned by the pigs

colm

Or beef

The tests have just come back positive......

blah · 09-12-2008 2:56pm

Hey, I've been there, 9.5 stone, juggling medication, eating soup. But that was a few years ago and after a section of my intesting being removed I'm fine, into running and football, trying to lose a few pounds now actually :rolleyes:

I've been through Christmas not being able to eat the dinner and it's a pain but hopefully you fistula will stay closed and things will improve. Good luck

The_Conductor · 09-12-2008 3:02pm

blah wrote: »

Hey, I've been there, 9.5 stone, juggling medication, eating soup. But that was a few years ago and after a section of my intesting being removed I'm fine, into running and football, trying to lose a few pounds now actually :rolleyes:

I've been through Christmas not being able to eat the dinner and it's a pain but hopefully you fistula will stay closed and things will improve. Good luck

I've been the same.
When I was first diagnosed- I had fallen to just over 6 stone, and was in hospital on a drip- as I couldn't even drink water. I had been told it was entirely psychosomatic, and my not eating was a psychiatric condition which required psychiatric treatment (needless to say, I've never gone back to that doctor).

I've had my fair share of fistulas and general episodic recurences. I've had surgery 4 times, thus far.

Akin to blah- I could seriously do with loosing weight, in my case about 2 stone in weight at the moment- I'm just not as active as I used be.......

Hang on in there- it can seem like a never ending problem when you're in the middle of a flareup or recovering from surgery etc- but you will actually be amazed at how quickly you'll get back up on your feet and on the road to recovery again.

I always found that a blanket ban on alcohol and minimising dairy products while recovering to be helpful- but everyone has different triggers.

S.

Colmm23 · 09-12-2008 3:03pm

smccarrick wrote: »

Or beef
The tests have just come back positive......

Good god, just what the farmers dont need, another bloody crisis

and Blah I can sympatise with you it must have been terrible and by the way I cant even have soup, its black tea and ice pops for me I'm afraid!

Dan133269 · 09-12-2008 5:06pm

MORISH wrote: »

Yeah i use peppermint tea a lot even when my chron's isn't a problem, but cant take capsules as the wax on the capsules repeats on me something rotten.
Got my 1st set of humira injections last week, the nurse said it could take a few weeks to see improvement, but i stopped cellcept last week and am already feeling a bit better i had my concerns with that medication all along, but i'm sure it was keeping the chron's at bay for a while anyway.

How are you guys getting on?

Nerdysal how are you? are they giving you treatment for the fistula?

Dan1333269 how are you since you got out of hospital?

Hey Morish, thanks for asking, not great since I got out, went back once and they told me just to increase my dosage, sadly this hasn't done the trick and I'm probably gonna go back to a and e and be admitted within next few days, cramps still there and vomiting now and again.

The thing is, while I'm obviously suffering, I'm really lucky that it's happening at this point in time, I finished college in may, spent summer in america and only got sick when I came back and I've been on the dole since I got back. If i had a job I definitely would have had to give it up, or if I was in college it would have been a struggle keeping up with the work missing days here and there. I'm doing a course at the mo and thankfully won't have to do much real work until January, that thought has kept me fairly relaxed when I was sick for the last while but January is getting closer now and I'm still not out of the woods. It's such a f*ckin hindrence this disease. What are everyone else's experience of having to quit work/college, miss family commitments etc because of this? If I had children it'd be terrible because I wouldn't be able to look after them

Colmm23 wrote: »

hey Folks,

I've been watching this forum for a while now and feel the need to share my story with yee in return for some support.
I was diagnosed with chrons a month ago but my problems go back as far as june when I was referred for a scope by my GP with a suspected stomach ulcer. The scope was done and inflammed ulcer was confirmed, it was restricting the flow of food from my stomach, so went on medication to reduce the inflammation but didnt work and I wound up been admitted to hospital 10 days later. Tried dilating the blockage but didnt work, so the surgeons entered.
My surgeon planned on removing the inflammed section at the outlet of my stomach and reattaching the ends again but alas more complication. When he got a good look inside it was inflammed so much that he felt it was dangerous to try cut it out because of its proximity to my pancreas e.t.c. He proceeded to do a gastric bypass, he also removed my appendix and a small piece of my large intestine, just for good measure!!
I spent 13 days in ICU after this op on TPN, terrible experience. Nurses were excellent though.
Was realeased from hospital a few days later but ended up in A&E about a month later with the pains that yee have talking about and OMG they were crippling I actually could not get out of the bed and the ambulance had to be called to bring me, pain can not be described it was that bad.
Painkillers and antibiotics were subcriped and I was kept for a fortnight in hospital to allow inflammation to settle again. Realised form hospital and ended up back again in 6 days, not as bad this time because I felt it coming at an earlier stage.
Was put on an elemental diet at this stage and I asked for a second opinion so I was referred to St James under Dr Mahmud, (anyone else under him?).
Scopes were done here again and biopsies taken along with CT scans to try and determine exactly what was causing all this grief. The result after a lot consulting between doctors and surgeons it was confirmed as chrons.
I was supposed to start on infliximab but to top it all off an abdominal fistula appeared so that put a stop to infliximab, cant have any infections when your starting on infliximab it seems.
After six weeks in hospital(this time) I was allowed home(out a month now) and Have been on a semi elemental diet(peptamen) for the last 6 weeks, absolute torture, to allow fistula close up and it seems to be working. Have one week left now before I go back to the clinic and hopefully will get to start proper treatment to settle this chrons.
I am very nervous though after all this to go back eating food incase it all takes off again, anyone else felt this way??
Currently on Pentasa, Imuran, Ciproxin and Flagyl but these are just to control the fistula I think, am I right?
I have also lost over 2 stone in weight and feel terrible about how skinny I am, will the weight come back??
Anyone with news that will lift my spirits please reply because to go from a healthy 28 yr old guy playing sport to a skinny sick person that I am now is cripling for me like I imagine it is for most people.:(

Ah that's nasty, but don't worry chin up, crohn's disease is always like that, you'll get bad patches but they'll usually be followed by periods of good health, it generally goes up and down in waves. I got a terrible dose when I was 16, went from playing sports to lying in a hospital bed unable to move, few months later managed to get bit better and kept improving. For the last few years up until the last few months I've been in great health, training weights and kickboxing even managed to do a few fights. Hope that gives you hope. All we need is time for circumstances to change. Hope you're feeling better Colm. And don't worry about the weight loss, when you're back to health you'll put it back on no problem and you'll enjoy doing it too

I got peppermint oil tablets other day heard they were great for easing passage through the bowels and releaving cramping, have to say they've done nothing for me and I've felt worse after taking them. Took them on 2 days, might try them 1 more time to make sure but that'll be it if I don't feel well after them. Just a bit baffled as to how they would have the opposite effect of what they are supposed to

MORISH · 10-12-2008 12:44am

Hey colm, Hope your finding the support and encouragement you need from this thread. I was diagnoised over 13yrs ago and only last month found this thread and as i'm currently having a flar up i have found the people on here great help, its nice to know we are not alone when the going gets tough. But we all know how you feel and if nothing else i hope that helps you.

I was on an elemental diet 4 yrs ago for an abdominal fistula that occoured after i had an iloeceacal resection, and when i came off the diet i was given a refeeding programme to reintroduce food slowly, not sure if thats what your dietitian will do but try not to worry about the food thing cos belive me once you start eating there is no stoping, i hate food when i'm sick but when i'm myself again i'm a total foodie, i cook, bake and do loads of food things its my passion like sport is yours so you will get back to normality.

As you'v been in hospital for most of the time since your diagnosis i'm guessing you might be apprehensive about being at home and what the future holds i know i did after i came out of hospital after long stays especially after the whole TPN thing and i'm a nurse so you might think i should have been ok but i was a wreak. My fistula cleared up with infliximab but it did open again after 3 months so i had a second small surgery to fix it, they found out that the fistula might have been surgery related instead of the chrons itself, that was 4yrs ago and i'v never had a fistula since.

Now i'm on Humira which is the same type of drug as infliximab and i'm feeling great back eating and looking forward to christmas. You will have ups and downs with this disease but you learn to really enjoy the good times more than you might have done before. Just try to remember that this desease does its own thing sometimes and we cant control it, all you can do is to try and have a healthy lifestyle and i now try not to get to stressed cos for me thats my big trigger, i think thats why i have found this site great we can vent to each other and know that we all understand what living with chrons is like.

Take care of yourself and let us know how your getting on.

nerdysal · 13-12-2008 12:50pm

Colmm23 wrote: »

hey Folks,

I've been watching this forum for a while now and feel the need to share my story with yee in return for some support.
I was diagnosed with chrons a month ago but my problems go back as far as june when I was referred for a scope by my GP with a suspected stomach ulcer. The scope was done and inflammed ulcer was confirmed, it was restricting the flow of food from my stomach, so went on medication to reduce the inflammation but didnt work and I wound up been admitted to hospital 10 days later. Tried dilating the blockage but didnt work, so the surgeons entered.
My surgeon planned on removing the inflammed section at the outlet of my stomach and reattaching the ends again but alas more complication. When he got a good look inside it was inflammed so much that he felt it was dangerous to try cut it out because of its proximity to my pancreas e.t.c. He proceeded to do a gastric bypass, he also removed my appendix and a small piece of my large intestine, just for good measure!!
I spent 13 days in ICU after this op on TPN, terrible experience. Nurses were excellent though.
Was realeased from hospital a few days later but ended up in A&E about a month later with the pains that yee have talking about and OMG they were crippling I actually could not get out of the bed and the ambulance had to be called to bring me, pain can not be described it was that bad.
Painkillers and antibiotics were subcriped and I was kept for a fortnight in hospital to allow inflammation to settle again. Realised form hospital and ended up back again in 6 days, not as bad this time because I felt it coming at an earlier stage.
Was put on an elemental diet at this stage and I asked for a second opinion so I was referred to St James under Dr Mahmud, (anyone else under him?).
Scopes were done here again and biopsies taken along with CT scans to try and determine exactly what was causing all this grief. The result after a lot consulting between doctors and surgeons it was confirmed as chrons.
I was supposed to start on infliximab but to top it all off an abdominal fistula appeared so that put a stop to infliximab, cant have any infections when your starting on infliximab it seems.
After six weeks in hospital(this time) I was allowed home(out a month now) and Have been on a semi elemental diet(peptamen) for the last 6 weeks, absolute torture, to allow fistula close up and it seems to be working. Have one week left now before I go back to the clinic and hopefully will get to start proper treatment to settle this chrons.
I am very nervous though after all this to go back eating food incase it all takes off again, anyone else felt this way??
Currently on Pentasa, Imuran, Ciproxin and Flagyl but these are just to control the fistula I think, am I right?
I have also lost over 2 stone in weight and feel terrible about how skinny I am, will the weight come back??
Anyone with news that will lift my spirits please reply because to go from a healthy 28 yr old guy playing sport to a skinny sick person that I am now is cripling for me like I imagine it is for most people.:(

Hey There! I've had crohn's disease for 3 years now and yesterday was the first day I got really really good news. My protein is up and my haemoglobin is the highest it has ever been and also my weight it up to 51.85kg. I know 3 years seems like an awful long time but I had to make mistakes along the way and learn what does and doesn't affect me. I did my leaving cert this year and if I'm honest I don't think I would have done near as well as I did if it wasn't for crohn's. It's made me all the more determined- remember,what doesn't kill you make's you stronger. That's certainly the truth in my case!

smccarrick wrote: »

I always found that a blanket ban on alcohol and minimising dairy products while recovering to be helpful- but everyone has different triggers.

S.

It goes to show how different every crohn's sufferer is. Milk is what kept me going when I was at my worst! I drank 3 litres a day at one stage! I know how lucky I am because alot of crohn's sufferers are lactose intolerant. But then, I can't eat ANY fruit!

The_Conductor · 13-12-2008 12:55pm

nerdysal wrote: »

It goes to show how different every crohn's sufferer is. Milk is what kept me going when I was at my worst! I drank 3 litres a day at one stage! I know how lucky I am because alot of crohn's sufferers are lactose intolerant. But then, I can't eat ANY fruit!

Lol.....
My drawers are full of dried fruit, and my fridge stewed rhubarb and other goodies. We really are a mixed bunch!

Something I didn't mention earlier was malt- I just cannot handle it at all..... That and anything with maize (aka Cornflakes etc).

I'm in good form at the moment though- thankfully,

Shane

tbh · 13-12-2008 2:37pm

smccarrick wrote: »

.

I'm in good form at the moment though- thankfully,

Shane

rightly so - delighted for you, sincerely delighted.

n1ck · 13-12-2008 6:50pm

I got diagnosed with Crohn's disease on the 11th of November after being in pain with it, without knowing what it was for a few years. On medication now and feeling grand. It's funny the sympathy i get when i say i have it, i'm not bothered by it at all, got so used to having it for so long.

Dan133269 · 15-12-2008 12:33am

n1ck wrote: »

I got diagnosed with Crohn's disease on the 11th of November after being in pain with it, without knowing what it was for a few years. On medication now and feeling grand. It's funny the sympathy i get when i say i have it, i'm not bothered by it at all, got so used to having it for so long.

good to hear you're doing well, what medication are you on? as regards sympathy, whenever I tell the lads I'm in pain I usually get a "ah shutup boy will ya"

what do people do or say to you that they sympathise with you?

n1ck · 15-12-2008 12:37am

I'm on steroids, Deltracortril and Asacolon, i'm anaemic too so i'm on Galfer for two months.

People are usually like "Oh i'm so sorry to hear that you have it." I'm like feck off will ya, it doesn't bother me at all, i feel great now so i'm no different except a lot happier and more outgoing cause i'm not worrying about it at all!

Dan133269 · 15-12-2008 12:55am

n1ck wrote: »

I'm on steroids, Deltracortril and Asacolon, i'm anaemic too so i'm on Galfer for two months.

People are usually like "Oh i'm so sorry to hear that you have it." I'm like feck off will ya, it doesn't bother me at all, i feel great now so i'm no different except a lot happier and more outgoing cause i'm not worrying about it at all!

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

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

Crohn's Disease

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