Crohn's Disease

Berty

Thanks Lucy.

We are looking forward to and hoping for a painless, quick and sucessful reversal within 3 months.

(1)Im looking forward to getting her home,
(2)to having her enjoy a full day without wincing in pain because of cramps,
(3)enjoy eating food without fear of potential cramps,
(4)not suffer with back pain any longer because of the inflammation pushing against her back,
(5)not have to stay within sight of a bathroom any longer because of her chronic diarrhoea(because the toilet follows her around)
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(6)not have to wake up at 3am to find her missing from the bed only to find her curled up on the landing in the fetal position crying in pain.

LucyBliss

Berty, I hope she gets all that and more, and I hope that the two of you get to be able to enjoy your lives.
I tell you, the being able to enjoy food part again is so exciting. It's two years since my surgery and I still got giddy on Sunday because I was able to eat a picnic lunch in Coole Park after walking my dogs. It was just a bagel but when I think of all the times I could barely eat a slice of toast without there being severe consequences, it might as well have been caviar or something equally exotic.

Berty

AHAHAHA

All I hear is :

"I want a chinese"
"You can't have a chinese"
"I WANT A CHINESE"

So I sent her a picture of my chinese takeaway one night and she said she would have eaten the phone itself when she saw the picture.

Albeit, its the steroids talking we both cannot wait until she can enjoy food without worrying about the aftermath.

Thanks again Lucy. I'll show her your posts tomorrow night.

Ush1

Anybody get bad side effects from Imuran?

I seemed to be doing grand when I started on it there. Feeling really good. Then I picked up a cold. Felt rubbish(obviously) but now the cold seems to have cleared but I have a MAJOR lack of energy and get these intense headaches sometimes. My appetite is totally gone aswell. My bloods look okay but still showing signs of inflammation and Crohns symptoms haven't gone altogether.

The_Conductor

Ush1 wrote: »

Anybody get bad side effects from Imuran?

I seemed to be doing grand when I started on it there. Feeling really good. Then I picked up a cold. Felt rubbish(obviously) but now the cold seems to have cleared but I have a MAJOR lack of energy and get these intense headaches sometimes. My appetite is totally gone aswell. My bloods look okay but still showing signs of inflammation and Crohns symptoms haven't gone altogether.

I developed a hyper sensitivity to Imuran- a cold turned into double pneumonia, a white cell count of less than 1, and despite 5 attempts to get a bone marrow sample- I was told I effectively didn't have any......

Lack of energy could be any of a number of different things- when its associated with Crohn's it tends to be a Vitamin B12 deficiency (as the terminal illeum, normally the first point that Crohn's attacks, is also the sole location that B12 is absorbed).

The lethargy associated with Crohn's, poor diet that many of us have, shortening daylength at this time of the year- and the various meds we're on can all conspire together to make us feel like crap. You can go down the list, excluding things- and never get to the bottom of why you feel so poorly- it might simply be everything together.

What I try to do at this time of the year- is get out more than I normally would during the summer to maximise my exposure to daylight (I know I sound like a vampire- but its really not funny). I get in more walks than I normally would- and when I can stomach it, I try to eat a lot more fruit and less starchy foods.

While on the Imuran- I did get incredible headaches- and was referred for an MRI, which came back negative (thankfully). I was given a prescription for Zomig- which I found very useful, and since I've come off Imuran, I haven't needed to use at all. When I say incredible headaches- it was like severe migraine- I wouldn't be able to even stomach water- however, unlike a Crohn's attack- there was no abdominal pain associated with it, and after a Stemitil injection and lying down for a few hours- I'd be good to go again........

Crohn's really does make us face how frail our bodies really are..........

SusieBoozie

smccarrick wrote: »

I developed a hyper sensitivity to Imuran- a cold turned into double pneumonia, a white cell count of less than 1, and despite 5 attempts to get a bone marrow sample- I was told I effectively didn't have any......

Lack of energy could be any of a number of different things- when its associated with Crohn's it tends to be a Vitamin B12 deficiency (as the terminal illeum, normally the first point that Crohn's attacks, is also the sole location that B12 is absorbed).

The lethargy associated with Crohn's, poor diet that many of us have, shortening daylength at this time of the year- and the various meds we're on can all conspire together to make us feel like crap. You can go down the list, excluding things- and never get to the bottom of why you feel so poorly- it might simply be everything together.


What I try to do at this time of the year- is get out more than I normally would during the summer to maximise my exposure to daylight (I know I sound like a vampire- but its really not funny). I get in more walks than I normally would- and when I can stomach it, I try to eat a lot more fruit and less starchy foods.

While on the Imuran- I did get incredible headaches- and was referred for an MRI, which came back negative (thankfully). I was given a prescription for Zomig- which I found very useful, and since I've come off Imuran, I haven't needed to use at all. When I say incredible headaches- it was like severe migraine- I wouldn't be able to even stomach water- however, unlike a Crohn's attack- there was no abdominal pain associated with it, and after a Stemitil injection and lying down for a few hours- I'd be good to go again........

Crohn's really does make us face how frail our bodies really are..........

Hey, have have crohns 14 years and have had 4 opps and a recent Ileostomy which diddnt go as i got septisis and was sedated for a week then multable abseces that had to be drained so all in all my body is as frail as it can ever be even tho i look like the most healthiest person you could come across.They tried me on everything,even Humira and inflixiab and it nearly killed me my heart when absolutly mentle with the infliximab. Well immuran made my hair fall out!i could go on and on but i wont bore ye lol its an awful illness but could be even worse!

Take care x:p

SusieBoozie

Stephen P wrote: »

It took them ages to diagnose me, well over a year anyway. Loads of different tests colonoscopy etc. Waiting for them to diagnose it was very stressful and frustrating, which didn't help the matter.

Hey i was very lucky i goy diagnosed within a year with my first scope,when i say lucky i suppose i wasnt that lucky after what ive been threw the last 14 years!

The_Conductor

SusieBoozie wrote: »

Hey i was very lucky i goy diagnosed within a year with my first scope,when i say lucky i suppose i wasnt that lucky after what ive been threw the last 14 years!

Lol- we've both been through the wars with Crohn's- I've had surgery 6 times (thus far- and am going to have to go back at some stage as I have a surgical hernia that needs repairing!)

It took 11 years for me to get a diagnosis- which probably was worse for me as a teenager, than the constant pain.

Hang on in there- is all I can say- there are definitely good days to look forward to- even when you feel like crap, think of what you're going to do when you're up to it.

Shane

Berty

Speaking again of my OH as you all refer to diagnosis.

She was incorrectly diagnosed, as Im sure many are, of having Ulcerative colitis and it took her to DEMAND a 2nd opinion to be actually diagnosed with Chrons.

This meant her sister also underwent the same test and low and behold she has Chrons also.

Prior to her CT scan 3 weeks ago when they "found" the inflamattion all her consultant kept telling her was "oh your chrons is just very active" when she complained about incredible pain.

Not once did they refer her for anything other than a Colonoscopy. Oddly enough the problem was on the outside of the colon so their silly camera couldn't spot it.

Again it was myself who admitted her to hospital saying "somethings not right here".

So angry at her Consultant right now.

SusieBoozie

sheesy wrote: »

Thats really helpfull thanks a million. Cant seem to get a straight answer from doctors about the operation! I was on humira for over a year but just didnt work. Hoping infliximab will work for a while at least as im due to start a masters in september. Hoping I dont have a reaction to it like that, already having chest pains from a pulmonary embolism!!:)

Hey,defiantly do try infliximab,its worth a go.everybody is different and i hope it works for you.it takes a day for this injection,they monitor you and it goes in very slow,you also get bloods done before hand.but should be painless.if you have any questions e-mail me on mollser100@yahoo.ie

Take Care:D

SusieBoozie

Hey everyone,

The Irish society for crohns and colitis are having meeting around Ireland

Sat the 9th of Oct 2010
Bridge House Hotel
Tullamore Co Offaly
2-5pm

Sat the 19 February 2011
Clonmel Park Hotel
Tipperary
2-5pm

Sat the 9th of April 2011
Wynns Hotel
Abbey Street
Dublin
2-5pm

They have Doctors and dietitians that talk about everything and you can ask questions. Hope this is useful to people:D

HigginsJ

Berty wrote: »

Speaking again of my OH as you all refer to diagnosis.

She was incorrectly diagnosed, as Im sure many are, of having Ulcerative colitis and it took her to DEMAND a 2nd opinion to be actually diagnosed with Chrons.

This meant her sister also underwent the same test and low and behold she has Chrons also.

Prior to her CT scan 3 weeks ago when they "found" the inflamattion all her consultant kept telling her was "oh your chrons is just very active" when she complained about incredible pain.

Not once did they refer her for anything other than a Colonoscopy. Oddly enough the problem was on the outside of the colon so their silly camera couldn't spot it.

Again it was myself who admitted her to hospital saying "somethings not right here".

So angry at her Consultant right now.

Best of luck to your OH.

Odd that they could diagnose her without the CT in the 1st place. The consultant i went to didnt diagnose till the CT.

Have my 2nd CT this year on thursday, seems like they may be looking at OP as one particular area of the bowel seems to not be responding to any of the treatment so far.

Dan133269

SusieBoozie wrote: »

Hey everyone,

The Irish society for crohns and colitis are having meeting around Ireland

Sat the 9th of Oct 2010
Bridge House Hotel
Tullamore Co Offaly
2-5pm

Sat the 19 February 2011
Clonmel Park Hotel
Tipperary
2-5pm

Sat the 9th of April 2011
Wynns Hotel
Abbey Street
Dublin
2-5pm

They have Doctors and dietitians that talk about everything and you can ask questions. Hope this is useful to people:D

I heard on the radio there's a meeting in Tramore, Co. Waterford too sometime. Anyone have any info on this?

Ush1

smccarrick wrote: »

I developed a hyper sensitivity to Imuran- a cold turned into double pneumonia, a white cell count of less than 1, and despite 5 attempts to get a bone marrow sample- I was told I effectively didn't have any......

Lack of energy could be any of a number of different things- when its associated with Crohn's it tends to be a Vitamin B12 deficiency (as the terminal illeum, normally the first point that Crohn's attacks, is also the sole location that B12 is absorbed).

The lethargy associated with Crohn's, poor diet that many of us have, shortening daylength at this time of the year- and the various meds we're on can all conspire together to make us feel like crap. You can go down the list, excluding things- and never get to the bottom of why you feel so poorly- it might simply be everything together.

What I try to do at this time of the year- is get out more than I normally would during the summer to maximise my exposure to daylight (I know I sound like a vampire- but its really not funny). I get in more walks than I normally would- and when I can stomach it, I try to eat a lot more fruit and less starchy foods.

While on the Imuran- I did get incredible headaches- and was referred for an MRI, which came back negative (thankfully). I was given a prescription for Zomig- which I found very useful, and since I've come off Imuran, I haven't needed to use at all. When I say incredible headaches- it was like severe migraine- I wouldn't be able to even stomach water- however, unlike a Crohn's attack- there was no abdominal pain associated with it, and after a Stemitil injection and lying down for a few hours- I'd be good to go again........

Crohn's really does make us face how frail our bodies really are..........

Yeah it does suck alright.

I don't know if I still have a cold or what but my stomach doesn't feel great and have zero appetite. My last set of bloods were taken on Friday and they looked okay, nothing too out of the ordinary. I'm getting more taken Friday coming so we'll see how that turns out.

They said my haemo globin is slightly low but nothing too bad but I'm almost sure it's the Imuran.

SusieBoozie

Dan133269 wrote: »

I heard on the radio there's a meeting in Tramore, Co. Waterford too sometime. Anyone have any info on this?

Hey check out the I.S.C.C website xx:D

Berty

Okay well. Strange question to all of those with Stomas.

My OH, as mentioned, has a Stoma which is working I guess as it should. It is filling very fast mind you but her dietician is looking into that.

Anyway, she is having a lot of bowel movements and still going to the toilet on top of the stoma bag filling up.

I cannot imagine this is normal.

Should we be calling the district nurse?

CarrickMcJoe

Berty, cant imagine thats right. It is a temp bag I think. Mine is permanent so the rectum is no more. Id call the nurse for advice.
Good luck.

The_Conductor

Berty- the district nurse is unlikely to be able to help- you need an urgent appointment with the gastroenterologist under whose care your girlfriend is. Ring and get an emergency appointment.

CarrickMcJoe

Hi Berty
Try this no.
You should contact the Ileostomy and Internal Pouch Group who are better up
than us on the following numbers: 059-9131005 after 7 p.m. at night, lady's
name is Cepta Burke

Berty

CarrickMcJoe wrote: »

Hi Berty
Try this no.
You should contact the Ileostomy and Internal Pouch Group who are better up
than us on the following numbers: 059-9131005 after 7 p.m. at night, lady's
name is Cepta Burke

Thank you. She's off playing golf though.

lizabbey7

lizabbey7 wrote: »

sometimes it does feel like god when are things going to get better.....i am off humira & imuren, I was having side effects from the imuren I think, still now 100% and to top it off they have confirmed yesterday that I have TB so I am off all chrons treatrment until the 6mths of TB treatment is up....so sick of tests & bloods...sorry there is my rant

off the imuren 3 nths now and all the aches and pains have gone and also all the lumps on my hands..conslutant has confirmed that it was down to the imuren but it was hard to diagnose this as I was having other symtoms. My xrays and lung biopsies came back positive for TB so I am off all the chrons meds and just on the TB meds...only 3.5mths left on them. Bowel has stayed settled, energy levels back up and I am feling good. As a result of being on the Humira I got TB. really feel like I will be pushing to stay off everything

lizabbey7

Ush1 wrote: »

Anybody get bad side effects from Imuran?

I seemed to be doing grand when I started on it there. Feeling really good. Then I picked up a cold. Felt rubbish(obviously) but now the cold seems to have cleared but I have a MAJOR lack of energy and get these intense headaches sometimes. My appetite is totally gone aswell. My bloods look okay but still showing signs of inflammation and Crohns symptoms haven't gone altogether.

Hey yeah definately felt the same, was on imuren for nearly 2 years before I got really bad side effects, keep an eye on it, if it gets any worse you need to let your consultant know

SusieBoozie

Berty wrote: »

Okay well. Strange question to all of those with Stomas.

My OH, as mentioned, has a Stoma which is working I guess as it should. It is filling very fast mind you but her dietician is looking into that.

Anyway, she is having a lot of bowel movements and still going to the toilet on top of the stoma bag filling up.

I cannot imagine this is normal.

Should we be calling the district nurse?

Doesnt sound right!i know i get the urge to go but dont go but ive an Ilesotomy.Ring the nurse!

HigginsJ

lizabbey7 wrote: »

off the imuren 3 nths now and all the aches and pains have gone and also all the lumps on my hands..conslutant has confirmed that it was down to the imuren but it was hard to diagnose this as I was having other symtoms. My xrays and lung biopsies came back positive for TB so I am off all the chrons meds and just on the TB meds...only 3.5mths left on them. Bowel has stayed settled, energy levels back up and I am feling good. As a result of being on the Humira I got TB. really feel like I will be pushing to stay off everything

Best of luck. Hope things stay clear.

Had CT scan last thursday (colonoscopy, week and a hal ago, showed alot of inflamation and infection still) Hope consultant gets CT results this week now. She was saying after colonoscpy that OP might be way to go. If not will be put on Imuran or Humira (i think). Dont care at this stage. Just want something to make a difference.

Dan133269

SusieBoozie wrote: »

Hey check out the I.S.C.C website xx:D

I did, can't find anything on there. care to send me a link please?

Best wishes to everyone who is struggling with crohn's at the moment. 1 1/2 year ago I had an ileostomy. Now I am in fantastic health. Hope that's hope for some people.

HigginsJ

that looks very harsh. had seen people mention it but never checked out what it was. do you have a pouch/bag on the outside of your body? How do you cope?

caramel08

hi,
I was diagnosed with crohn's when I was a teenager in the 90s and after a few years of trying everything that was available back then and changing doctors, i eventually found that Imuran worked for me. It doesn't work for everyone but I would encourage anyone suffering at the moment to give it a try if they can. It may not work for a few weeks or even months but I found after 3 months on it, it started to work. that was over 12 years ago now. If you're not happy with your doctor, change if you can. It's hard enough describing your symptoms to someone you know let alone to a total stranger. I would highly recommend the gastroenterologist in Beamount. If anyone would like his contact details, please PM me.
best of luck to everyone struggling with this horrible illness xxx

-Corkie-

I have been great health up to a while ago. My consultant sent me for a bowel xray where you have the barium meal and the laxatives. I have been in the horrors since. Its like been back at square one.

Killer_banana

I was just wondering about contraception and Crohn's disease. I've heard that the pill's not as affective as normal due to malabsorption problems so I'm looking into other methods. I'm thinking maybe the nuva ring or the patch? I've researched both, found pretty much nothing on the patch with Crohn's disease but found a good few things to do with the nuva ring. Mainly it's positive but heard it can aggravate Crohn's as well so just wondering if anyone here has any experience with either? Or if you use a different contraceptive method what's it like? Has anyone experienced any flare ups related to contraceptive? Basically any personal stories are helpful. Thanks.

Asphyxia

My sister was diagnosed with Crohn's disease this time last year. It awful to say that we nearly lost her to it she had to have a couple of different surgery's and by accident they took out half of her bowel, because of this she now has to get an injection every 3 months for the rest of her life as well as what she has been prescribed to. I hate seeing her struggle with it and I really feel for everyone in this thread.