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Crohn's Disease
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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 experienced0 -
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.0 -
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
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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......??0 -
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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.0 -
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.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?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?0 -
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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.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?
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?0 -
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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.:(0 -
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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
colm0 -
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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 0 -
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.
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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!0 -
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 themhey 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 to0 -
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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!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.:(
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!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.
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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? 0 -
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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.0
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