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(Sunday, 26th Oct, 2014)

Crohn's Disease

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19 Posts

Gerry  ·  09 Sep 2010

I have used Immodium to help with the diarrhoea! It's available over the counter, just be careful you don't take too many. When I have diarrhoea I take about 2 twice a day!!

Enjoy the holiday!! Smile

 

11 Posts

LucyLoo  ·  09 Sep 2010

Hi all, Firstly let me warn you this is a possible ''Too Much Info'' post!

Ive had crohns 9 years and Im currently on Humira. Overall Im doing very well (knock wood) But at the moment Im having a couple of dodgy weeks. Normally, I have diarrhoea every morning for a few hours then it usually settles down and I'm fine, albeit a little knackered! At the moment though its lasting longer than usual (most of the day). Normally I can ring the clinic and they'll just adjust my meds over the phone till I'm well enough to come in. Unfortunately my team is on holidays for the week and the doc I spoke to was, to put it politely, less than helpful. Couldn't understand why I couldn't just come in for a check-up (clinic closes at 4, I live 40 miles away - cant stay out of toilet that long at the mo). Anyhow, I explained that I was going on holiday next week and really need to get it sorted. I have an appt for next Wed (two days before Im due to go away) and that's providing I can make it there before they go home!

Really what Im asking is if there is anybody out there who knows of anything I can try that might stop (or just lessen) the diarrhoea, gurgling, pushing etc? I've tried motillium, buscopan and pentasa supps. Nothings worked so far.

Any thoughts or suggestions greatly appreciated!!

 

1 Posts

Bryn  ·  29 Aug 2010

Sarcoidosis

What do we know about this disesase?

What are the common symptoms associated with Sarcoidosis?

Are Sarcoidosis and Crohn's disease the same?

It is said Ireland has a high incident rate of Sarcoidosis, why?

Where can I find help online about Sarcoidosis and its associated effects?

Are there any Sarcoidosis self-help groups based in Ireland?.

Regards Bryn

 

19 Posts

dasan  ·  29 Jul 2010

Hi All,

Imuran didnt agree with me at all. Broke out in an awful rash and skin felt like it was on fire.

Back to square one again, only on painkillers and anit sickness tabs. Waiting to have an mri scan, they think I have another fistula on either my bladder or womb.

Keep well

 

6 Posts

elnino9  ·  29 Jul 2010

I was on Imuran last year. Had to get blood tests every week for first eight weeks. Had quite a bit of nausea when I was on them. After week 7 my blood count shot down very low so I had to stop taking them. I think if your feeling better after 8 weeks and bloods are ok, you should be fine. Just be careful for any signs of infection and so on.  

 

296 Posts

Broken  ·  29 Jul 2010

I was taken off Imuran almost a week or two after starting, it didnt agree with me.

keep it monitored and keep in touch with consultant and gp, but you probably will!


"Please God, help the ignorant!"

 

19 Posts

wally  ·  29 Jul 2010

Hi Lightweight

I was on Imuran a few years ago, didnt work for me got pleurisy and they said the imuran had nothing to do with it, but to ease my mind they told me to come off it till i was better and then to go back on it and i would be fine. I did that and only back on it a day when the pleurisy came back so I proved I was right, never had problems with my chest before so I think I Know my own body.  I am on Humira now which I find brilliant even though I am getting some pains in joints but nothing major, hope things go ok for u

Tracey

 

17 Posts

lightweight  ·  28 Jul 2010

hi all,i havent been on for a while,been having quite a few flareups with the Crohns,on steroids and pentasa at the min,also strted on Imuran yesterday,any feedback on that would be a great help. I met two people at the hospital on Mon, a man who said he stopped taking Imuran two weeks ago,cause he was sick of side effects,continious flu-like symptons,tingling in his hands,etc ,and a woman who's been on it over a yr,with no side-effects,although she's to have a scan next week. I'm guessing shes still having problems,we didnt get to finish our chat,look foward to hearing from you,

stay well

 

19 Posts

wally  ·  28 Jul 2010

Just to clarify I am covered for rubella, now and have been since then.

 

296 Posts

Broken  ·  27 Jul 2010

Many people are shocked when they go to doctors etc and are told they are not covered by the rubella jab they thought would cover them.

Not everyone can 'take' the vaccines.

its the same with other vaccinations.

this is a hyposises only (yep spelt that wrong!) but would it be the body has built up its own inbuilt 'vaccine?'  my theory and no ones elses and i aint no doc!


"Please God, help the ignorant!"

 

19 Posts

wally  ·  27 Jul 2010

I was diagnosed with Crohns in 2002, my 2nd son was born in 1993 and I had to get the rubella vaccine after this as I was not protected against it and it was picked up during my pregnancy, I did get this vaccine when I was a teenager so im wondering if it took that time to develop.  Also I work in the healthcare profession and had to get Hep vaccine, got 3 doses but it didnt take, got flu jab and swine flu jabs and was fine with both.

 

296 Posts

Broken  ·  27 Jul 2010

to ari,

Crohns is an autoimmune disease, the body attacks its own tissue thinking it is foreign.

No one quite knows why it happens and there is no cure.

Many things can kick off autoimmune i guess, one person told me viruses can or other such stuff, when the body tries hard to kick away the foreign attacks but goes a bit awol and attacks good tissue.

I dont know why i got crohns, but do know i have rubella virus dormant and not so dormant in the body.

I did get the flu jab last winter and i was very very worried.  I had it in the hospitals rather than at the GP as they had different batches.

I came through alive!  no sicker no better than before i had it.

life is a rubic cube!


"Please God, help the ignorant!"

 

1 Posts

ari  ·  26 Jul 2010

hi, can anyone help, my daughter has never been sick a day in her life, she got the cervical cancer vacine, about a month after getting the first injection she developed cronic diarrhoea, lost a lot of weight and after about four months we were told she has crohn's, that was in feb'10 she is still on steriods which havn't helped much and 6 mp which hasn't kicked in yet.The doctors say it has nothing to do with the vacine, but  i can't help but wonder.

 

296 Posts

Broken  ·  21 Jun 2010

Hello Lightweight,

First of all, Crohns is not a curable condition but we have to be proactive in our care.

I cut out Gluten in my diet, just not quite 100% yet.  Gluten is in a lot of foodstuffs and you can learn alot by googling Ceoliac requirements, joining the Ceoliac Association and you will get a 'bible' of foodstuffs you are allowed eat.

it takes committment.

I have also cut down sugars as in chocolate and pure granulated sugar.

Use pepper instead of salt to flavour as well.

Keep the milk products in as bone density will be a factor later in life and its important.

Fortisip, i drink as i feel we just do not know what the gut is able to absorb in the light of crohns.

I cut out red meat which takes three hours to digest and i found it hard on my gut!

Keep your general bloods monitored by the GP at all times.

Especially such things as iron and tyroid and Vitamin B12.

I have a slight flare of crohns at present but other autoimmune diseases are in a flare and i had been over indulging in sugar.

I think trying a gluten free diet was a good one as i was presenting with ataxia and i had been advised to try this by the Lupus Centre in London.

Remember too, Crohns is lifelong and all health and life factors must be considered.

I am only trying to optimize and compromise a situation so that i can actually enjoy life, hey, i havent succeeded on that score cos of other factors, 

what i am doing with the gluten free is at least keeping me from the toilet.

and for sure, we cannot be sure its the gluten free or other factors.

minefield, YES!

best of luck


"Please God, help the ignorant!"

 

17 Posts

lightweight  ·  18 Jun 2010

hi broken,im very interested in what you say about your diet,how did you work out whats got gluten in it or not? i recently cut out potatoes and cereal and saw a small improvement. my dietitian not too impressed, also she wants me to drink fortijuice but i think it has me in the loo all day. i had surgery way back in 1987 and was ok untill about 2yrs ago,am due back at hosp in july and would really like to give your diet a try before i get there. antispasmodics help but not a lot.

stay well.

 

296 Posts

Broken  ·  17 Jun 2010

Hi again,

Dasan, i hope the anti-spasmodic helps.

Not a nice condition Crohns, anyone see reference to how it can impact on ones life in the 'Health Supplement' of the Irish Times on Tuesday? by a consultant from Barts who likens dealing with it as similar to dealing with cancer, on cause and effect, so to speak.

My crohns is stabel on two entocort daily, but went thorough a horrible year with that and other autoimmune stuff, still convinced that changing my diet to gluten free has help the gut tract enormously.

whether that is more psychology or not, i do not know but defo the gut is behaving well and predictably.

I am also trying to keep sugar LOW and reserve that for my lattes.  Sorry, draw the line on how i help my health!

No one should be asked to sacrifice the latte!!!

My first surgery was in 02 and none since, no resection anyway.  I daily keep my fingers crossed as recently told i could be heading that way, but since diet change all stable on the 'middle earth' front!

xann keep well too.


"Please God, help the ignorant!"

 

19 Posts

dasan  ·  16 Jun 2010

Hi Guys,

Met with my consultant today who told me the pain I have could be caused by adhesions and put me on anitspasmotic tabs to try for 8 weeks.

Keep you informed.

Keep well!!!!!!!!!!!!!!

 

19 Posts

wally  ·  11 Jun 2010

I kept getting pleurisy when i was on imuran-on humira now and everything seems well.

 

296 Posts

Broken  ·  08 Jun 2010

Hello,

I didnt cope well with imuran either, and was taken off it very quickly after on it a short while.  I have been on low dose entocort for 10yrs now and i am worried about this i have to say.

best of luck

dont forget to have the reaction written up and its connection to the meds, very important.


"Please God, help the ignorant!"

 

19 Posts

dasan  ·  05 Jun 2010

Hi Guys,

Its me again!  Ended up with out of ours doc today. Developed a lumpy rash on both arms and neck which feels like its on fire.  Its a bad reaction to imuran, had to stop taking it straight away.  Have been very dizzy which is another side effect.  Since its the long weekend cant contact my ibd nurse till Tues.

Let you know what happens if I havent scratched myself to death by then.

Keep well!!!!!!!!!

 

19 Posts

wally  ·  05 Jun 2010

Mull, doesnt sound like crohns to me, say its a prob with ur womb, how did u get on in the docs?

 

19 Posts

dasan  ·  03 Jun 2010

Hi Guys,

Went to hosp app. Put me on imuran. 3 months before I feel any effects, have to have bloods checked every 2 weeks.

I suffer from back and hip pain and by evening I tend to look about 5 months pregnant.  I find a warm bath or hot water bottle helps.

Had a bit of trouble with social welfare, the nice people that they are!!!  Was too sick to collect my cert from docs and got a letter in post to say Ive been cut off until I explain in writing why my cert was late.

Will keep you updated. I only get €126.00 a week.  Think I was on a fortune.

Take it easy

 

11 Posts

mull  ·  03 Jun 2010

Hi- I am just wondering does anyone know if you can have very low pain and sometimes around your back and a terrible fulness in your stomach. Have an app with doc in morning-it reminds me of a bad period pain and I also got my period for two months but they have stopped in the last three days. It is driving me mad-any advice would be great, thanks.

 

19 Posts

dasan  ·  12 May 2010

Hi All,

Ended up back in docs today, two injections in the hips to make me human again.  Painkillers, anti sickness tabs and fortisip instead of food for a couple of days. €120.00. Couldnt believe it.

Have check up next wed with my consultant, not leaving until they give me something to give me my life back to some extent. Not going to spend the kids summer hols in bed sick and have them miss out.

Hope all keeping well!!!!!!!!!!!!!!

 

296 Posts

Broken  ·  10 May 2010

For Dasan,

Has your gastro upped the meds for inflammory disease, for that is what crohns is?

Eat a very bland diet, suppliment with fortisip if necessary.

pain control is the hardest.

go easy on taking the same ones every day.

just all this from my own experience.  thats all.

best of luck


"Please God, help the ignorant!"

 

8 Posts

Annie77  ·  07 May 2010

Hi Dasan

Sorry to hear your poorly!!

The problem with applying for disability allowance is  the Health Act (1970) does not classify Crohn's Disease as a long term illness. I applied for disability allowance in April 2007 and was finally awarded it in May of 2008. My situation was a bit crap to be honest! I applied and was refused twice, I was unfit for work previous to this and had been recieving illness benifit, for some reason the 'lovely' people at the Dept of Social Welfare think Crohn's Diseased can be cured within 12months, hence why the refusal! I did appeal the the refusuals twice and it went to the appeals office, I got awarded it and was told that it would last for 18 months (which is better then nothing)

A bit of advice if you do when going for your medical check up in the Social Welfare office bring all of your medication with you and a letter from consultants and gp saying you are unwell to work. Some of the doctors will ask blunt questions but make your answers as long as possible.

I was told by my gp that i would get it first time round and she was shocked when I had to appeal!

The entire system needs to be reformed! But is extremely unlikey to happen in this term of government!!

 

296 Posts

Broken  ·  06 May 2010

A friend in London has alerted me to a article in the WWDTY e-bulletin Broadcast May 6, 2010 659

It states that aspirin a day makes you six times more likely to develop crohns.

I am passing this on as of interest i have no qualifications or med background and this is through a friend and networking.


"Please God, help the ignorant!"

 

296 Posts

Broken  ·  05 May 2010

i had a resection.  they told me that they took away a small section about a foot and a half long, it happens to be where you absorb VitB12 and i now get that through monthly injections.

this may be what they are talking about.

crohns usually has a preferred point of attack and i think it's this part/


"Please God, help the ignorant!"

 

296 Posts

Broken  ·  05 May 2010

personal experience/not medical opinion.

I have crohns for ten years now. But i have a lot wrong with me as well.

Remember, most people are intelligent to try for better services and doctor treatment.

When our health system is a tad sick itself, everyone has to engage with their illnesses and disabilities to optimum levels.

research your condition to death.  I was sick with other autoimmune disease. Ceoliac diet was suggested in London.  I am now almost 100% gluten free and my walking has improved to the notice of most and myself too, not only that, for the first in years i feel i want food, i get tum rums and really look forward to a meal.

My crohns is better, in the sense its not all just coming out at the other end.  I have put on weight and feel it has improved my intestinal tract.

i just wanted really to say, doctors are not Gods, and we have the responsibility to care for our own bodies well.

Crohns is not on the long term illness scheme i dont think.

Pain control is funny as too many of the same medication can actually cause a rebound pain effect and your body gets used to most.

I dont have suggetions on that or the tiredness...i am working on that, but no best results as yet with the other conditions.

xxann

most meds make you sort of 'off' you are putting a chemical into you.  some very necessary, just a kinda preach there, sorry.

xxand all the best,

broken


"Please God, help the ignorant!"

 

19 Posts

dasan  ·  05 May 2010

Hi All,

Havent been very well. Had a scope done in February, crohns back with a vengence!!! Facing another operation shortly. Surviving on tylex for the non stop pain and stemetil for the sickness, they arent helping much. Been told to take it easy, not happening, with two children to look after and a partner working full time. Really fed up of being sick all the time.

Any suggestions for a good pain killer, I have a great gp but she doesnt seem to know much about crohns and asks me what Id like to try to make like a little more comfortable. Last painkillers she gave me were great but I fell asleep at the dinner table much to the shock of my 12 year ole daughter.

Got to the stage now all I want to do is sleep, no energy cause I cant eat. Thinking bout bringing suitcase with me on the 19th for my checkup and refusing to leave hospital until they make me feel half human again.

Another quick question-do you know of anybody on Disability Benefit for crohns? My gp keeps insisting I apply for this as it is long term illness!

 

6 Posts

elnino9  ·  04 May 2010

Im looking for some advice on something. I am currently on remicade for uc and have been for nearly a year. Im thinking of travelling to australia for a year in sep/oct and was wondering how i could continue receiving treatment over there? Has anyone had any similar experiences about travelling with uc or chrons?

 

19 Posts

Gerry  ·  02 Apr 2010

Smile Hi, Lightweight!! I aint too bad all things considered. Surgery last May. I still have bouts of cramps and wind!! Immodiium and Iron for me at the moment and some methotrexate??? Its more the isolation Crohns has brought me that affects me!!

Good that u feelin' groovy Cool. Wud be really great if there were no flare up when you finish meds.!! Not sure about the hereditary bit. Fingers crossed it aint!!

Stay good!

 

23 Posts

CD  ·  01 Apr 2010

Hi Lightweight

I wonder is it hereditary too I have Crohns, my Dad has Crohns, Uncle Crohns Colitis, Great Aunt Colitis

I can see it with my little brothers as well that they have something but one has had all the tests and has came back clear but so did I initially. It would make you think

C

 

11 Posts

mull  ·  01 Apr 2010

 hi just wondering if anyone could help me i am taking puri-nethol since dec 2008 i am breaking out in like a rash spots and bad reddness in my face and neck has anyone experience this threw that tablet any help would be great it seems to come on more strong at nite and like a burning sensation would appreciate went to doc he said come off it but as i said not sure if it is that tablet thanks 

 

17 Posts

lightweight  ·  31 Mar 2010

Hello Gerry

long time no hear,how have you been? ive checked this a couple of times and i thought people had given up on it. as you can see its been very quiet. ive been really well. touch wood. only one bad episode,which lasted a week. i kept saying ill give it one more day and if it doesnt clear up ill go to the hospital,but you know yourself its the last place you want to go. i took lots of mottilium, spasmodal, zantac, gaviscon, disprin,(im not recomending anyone else do it) and slept a lot. couldnt eat as much as a crumb,but it eventually settled. my gastro seems to think the isonazid cured the Chron's,but i know it didnt. even the TB doctor said if it did it will be a first. i think ive only one more trip to the TB clinic so it will be interesting to see if it does flare up when im off the tablets. how are things with you? you were'nt doing too good last time you were on. hope you've picked up somewhat. what do you think - is Crohn's hereditary?? my gastro says no,but my daughter is being sent for tests because shes having problems,and her doctor says it is. take care of yourself and let me know how your doing.

 

296 Posts

Broken  ·  29 Mar 2010

To Informed:

about the crohns disease being linked to the measles vaccine, please read my article in front of the Health Suppliment about a month ago which says :Rubella ruined my life' which it did, i am a result of contracting rubella, in the womb prior to birth.

the consequences have been horrendous. Yes, i have crohns disease, but i am deaf, have dystonia, ataxia, ceoliac, sjogrens, raynauds, hypothryoidism, deformed feet, scoliosis, was slow academically, have brain damage to frontal lobes, which leaves an organic personality disorder, which leaves me isolated, lonely without friends, and very little care packagages and all my health concerns being mainly addressed in London due to the stigma of psychological distress, for that was I when 19 and realised how badly i related to a world i didnt understand.

would you swap this type of living (oh, i dont walk well, and use a mobility scooter and two sticks), for crohns irradication due to some spurious research. I have crohns, no it isnt nice, but my life has not been nice in any shape or form.

I want eveyone to be informed about the lack of uptake of the MMR vaccination and i shall be interviewed by the WHO during the campaign on the uptake in April.

If you have the 'knowledge' from whence this discovery of link between crohns and the vaccination, please share it rather than scare others off the MMR vac.

yours etc,

destroyed.


"Please God, help the ignorant!"

 

19 Posts

Gerry  ·  27 Mar 2010

Hello All

This is Gerry, looking for lightweight to catch up and see how ur doing!! Hope u good!!

 

12,082 Posts

Anonymous  ·  11 Dec 2009

Crohn's disease and Ulcerative colitis were fairly rarely DIAGNOSED 30 years ago, that does not mean they did not exist.Do you have any proven scientific evidence to support your claim with regards to Chrons / colitis and vaccination? Becuase without documentary medical or scientific evidence it is merely supposition.

I agree with you fullly about the long term illness scheme tho.

 

282 Posts

informed  ·  10 Dec 2009

Have you heard that the drug payment scheme has gone up to 120 EURO

in the Budget.

It is long past the time for the Minister for Health to include Crohn's disease

and Ulcerative colitis ( A LONG TERM ILLNESS) under the LONG TERM ILLNESS

AND DISABILITY PAYMENTS SCHEME ( 1970 HEALTH ACT ) Which has not been

updated since 1970.

Irish Colitis & Crohn's Support

Helpline : 016282618

 

282 Posts

informed  ·  24 Nov 2009

Crohn's disease and Ulcerative colitis were fairly rare 30 years ago.

The huge increase in both of these long term illnesses in children/young adults has been linked to the measles vaccine.

Of course the medical profession will deny this, but they cannot deny

that it's big business for the medical profession/ pharmacists.

The HSE ignore the number of people with this long term illness and

discriminate against them under the Long Term Illness and disabilty payments

where other people with a long term illness receive free medication.

 
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