Crohn's Disease

The_Conductor

Thanks guys, just feeling a bit miserable. Kiddies due to visit this afternoon, so looking forward to hugging them.

Janedoe10

smccarrick wrote: »

Thanks guys, just feeling a bit miserable. Kiddies due to visit this afternoon, so looking forward to hugging them.

Hope u are feeling better now after your visit from your family .
It does get easier . Hope pain etc is easing .

shawnee

Crohns is a bitch of an ailment , have it for the last 15 years and last three or four has been really difficult. Very tired and probably not the best to be around , so it affects family life quite a bit. There is a support group on facebook and there is also the isscc support group. Wish you the best in you battle with the ailment.;)

LucyBliss

Oh, smmcarrick, I am so sorry to hear this. I'm not surprised you feel miserable. Whatever about being unhappy with Crohns in your own home, at least you're in your own space with your own things. Being unhappy in hospital is the pits.

I hope the visit from your family cheered you up a little. Please let us know how you're getting on. Damn, at times like this, I wish it was possible to be of more practical help because I've been sick like that, I've been in hospital and missed my family so I understand how it is. But all I can do is send you good wishes and hope that things get better for you.

OUTDOORLASS

Hi smmcarrick,
My thoughts are with u.....I have a loooooong and colourful history of Crohns...I have it since 1979....got it at age of
13....(giving my age away now....) Am presently on Humira and 6MP.......if u are trying to occupy yourself..google
LDN (low dose naltraxone) LDN/CROHNS ....I know some people who have been at wits end and gone on it and had great results....and seemingly very little side effects.....for some reason it does not get great publicity......There is only a handful of GPs
in the country who prescribe it......Hope u improve soon....

CathyMoran

smccarrick home - now if I could just get him to stop for a minute...

It will be brilliant when our children see him - he is still not well but he will recover better at this stage at home.

LucyBliss

Delighted to hear he's back home. Hospital is a fine place to be when you're actually sick and need treatment, but if you're trying to recover and recuperate, there's no place like home.

I'm sure the kids will have a wonderful welcome for him!

The_Conductor

Thanks guys....... I feel a little like Dorothy clicking my heels, chanting 'theres no place like home, theres no place like home, theres no place like home........' Nope, definitely not in Kansas......

Its so good to be home- unlimited stock of clean underwear :eek: as much ice cold water as I can drink. I'm not on solids at all yet, so I'll do a trip to the supermarket tomorrow and get some soup or something.

Just waiting for the munchkins to get home from creche- so looking forward to seeing them.

I live for hugs.......

Richard Dower

smccarrick wrote: »

Thanks guys, just feeling a bit miserable. Kiddies due to visit this afternoon, so looking forward to hugging them.

Wishing you the best bro!...you've been such a rock for people over the years with your insights and advice...time for us to give back

Richard Dower

Is it the third - OK, last time i posted was several months ago....i think i was toying with the idea of having surgery or not.....as it turned out.......:(

Yup, i went under the chop, again :rolleyes: - basically i tried to put off surgery as long as i could but i knew in my heart i'd end up on the table at some point....so i get another flare up/obstruction....or i *think* this is what's happening.

But the docs say no, markers are zero and you're not obstructed....i knew then that my innards were fecked and just not working right, the fusutla and scaring in the internal lining had created an area where fecal matter would not traverse without severe pain.

It was not a Crohn's issue but a mechanical issue, so i underwent surgery, after 12 years of being in the clear. I was under a knew surgeon i knew nothing about....my old surgeon who i had insisted do all my previous ops had passed away several years before.

So i was nervious, but the surgey went smooth....they removed 40cm in the usual flare up spot, junction between large/small bowel.....histology confirmed mild/medium Crohn's.....they said it wasn't so much the Crohn's but the mechanical damage.

Post op wasn't as bad as expected, out after 10 days and took a few weeks to recover, biggest post-op issue was the fibrosis/scaring of the wound, it gets worse with each operation.

You cut along the same scarline multiple times and the rough/lumpy bits under the skin can be very painful.....but months on everything has settled.
So i'm on Humira 80mg p.m. and 100mg of Imuran p.d.

I'll be on that full time, my immune system is nuts, gotta kept it dampened down....all in all the experience was tolerable and i wasn't very ill at anytime...twas more annoying then anything, i was more worried about the psychological aspects, handling things being i was 12 years clear....i did ok i guess

No major freakouts or losing it, helped massively by not being on steriods no doubt....

I think like alot of people it's this kind of latent dread....will it pop up again, the lack of control, why after 12 years

Drive yourself loopy thinking about it, it is what it is....deal with it if/when it comes, hope for the best and all that

But as of right now.....i'm good

Richard Dower

smccarrick wrote: »

Hospitalised again, since last Wednesday. A work colleague brought me straight in- same story as last April, more adhesions, and probable strictures. NG tube accidentally removed yesterday, while attempting to wash my hair, fairly spectacular nose bleed, thanks to the warfarin. Sipping fluid now- so the IV line isn't constant.

They gave me a bowel chart to fill out yesterday evening- I can't really put 'not applicable' in most of the fields and then say I've been to the toilet over 40 times?

I'm just so tired, and fed up, and sore, and hate sitting around wondering when I can get the next pain killers, so I'll be semi-functional for another few hours......

Sometimes you read about all these wonderful medical discoveries- full bowel transplants etc- and wonder- would your life be different if some miracle happened and you became a candidate for something like that? What about all the other adjutant conditions? Sarcoidosis, osteopenia, etc etc etc. Will have a miracle cure for any of these?

Been sitting at the window in here- for over 2 hours, wondering just when its going to get bright- watching the clouds flitting on the horizon- stormy weather today I guess.

Hope my little wifey and kids are ok, they're my life.

You know what used to depress me in hospital?....when it got dark, i was in Hozzie in the Winter and it got dark at 5pm, dunno.....just something about nights in hospital

Made worse i think when your sorta ok, mobile....boring!, i think the daily routine of hospital helps keep the mind occupied. I'm not a reader and a laptop in hozzie is out, too worried it'll get pinched.

So it's the patients around you, a kinda shared experience....lots of bitching about the health service , eveyone being amauter doctors and diagnosing people....or is that me

I dunno if a bowl transplant would help, it's an immue issue....it might attak the new bowel or even reject it, you've got nothing but time to think, and you're brain goes into overdrive spinning various scenarios and outcomes....like a supercomputer trying to facter ever variable.....sometimes it's better not to think.

You've got family, a wife who clearly loves and supports you...tbh not everyone has that, some go through things alone. I can't offer advice per se because it's different for everyone.

What got me through it is distracting the brain.......

Richard Dower

annacanna wrote: »

im casually seeing a guy with crohn's.
does crohn's affect a person sex drive or does it affect them sexually? i dont want to put any pressure on this guy and i think he would be embarrased and feel less manly if i asked him

sorry if this question is insensitive

I know this is an old post, dunno if you're still with the guy.....i don't belive sex drive is the issue for people with Crohn's moreso the aspect of....did he have surgery?

I say that because, personally....i have had issue with girls seeing my scars and being embarassed etc. Dunno if it's the same for everyone....but as advice already offered...communication is the key.

sexually you need to feel comfortable with one another and be ok with scars....i'm sure as a woman if you had scars you might feel uneasy, so let him know it's ok.

If he's on steriods....lol, expect more sex!, stuff is like go-go juice!

Klair88

HI all been violently sick and losing weight since may and have just been diagnosed with Crohn's disease. I've been reading through the thread a little to gather information on other people's experience with it. It is one hell of a disease and has made my life un-liveable the last 5 months. I am practically bed-ridden now at this stage.
But luckily i found a good GI doctor who knows what he's doing and taking care of me.
I am on Tramadol for the pain( which is intense to say the least). The steroids i take are called Budesonide and am on ciplox anti-biotic's with calcium tablets.

I also drink 2 ensure + nutritional drink to try gain weight. At the moment i'm 7.6 stone.
Has anyone else been on this medication? if so how have you found it?

Stephen P

Has anyone with Crohns been diagnosed with Osteoporosis? I'm back to see my consultant in St. James's on Monday week and I'm going to request a DXA Scan, will my GP need to send a referral or will my consultant agree to it? I suffer with neck pain for about 8 years and have tolerated it with painkillers but I'm thinking now it may be due to Osteoporosis?

scullen

hi everyone,

just a quick question am on imuran for the last 8 yrs approx no prob taking medication, last feb was put on mezavant also, colitis has cleared up for first time in years but am suffering awful pain in my mouth.. my tongue is stinging and heavy and gums and inside of mouth have little lumps on it. just waiting on blood test results back but was just wondering if it could be reaction from meds...

did anybody have side effects from this meds..

tks
colitis 26yrs.

stephen p.. my doctor sends me for regular dexta scans as steroids attack the bones.. you should have no problem getting your consultant to agree to one.

The_Conductor

Stephen P wrote: »

Has anyone with Crohns been diagnosed with Osteoporosis? I'm back to see my consultant in St. James's on Monday week and I'm going to request a DXA Scan, will my GP need to send a referral or will my consultant agree to it? I suffer with neck pain for about 8 years and have tolerated it with painkillers but I'm thinking now it may be due to Osteoporosis?

Osteopenia- early stage osteoporosis. Very low bone density. Am on calcium tablets etc to try to bring the density back up again (if thats possible?) Have had numerous breaks- but they tend to be fingers/toes rather than anything thats going to incapacitate me (mind you they hurt like hell).

Ask the doc about your neck pain- and do get it checked out- it could be totally unrelated- you never know- but it is worth getting it checked out. There is no point in me or anyone else speculating whether its related to the osteoporosis or not- I know I (thankfully) don't have neck pain- however that means precisely nothing. Get it checked out.

Stephen P

Thanks for the info below. I'm back to my consultant on Monday week and will try get them to send me for a DXA scan. I've been to a couple of talks on Osteoporosis and its 100% treatable and reversible. Hopefully my neck pain has nothing to do with that. I'll get the DXA scan first and then see about my neck

smccarrick wrote: »

Osteopenia- early stage osteoporosis. Very low bone density. Am on calcium tablets etc to try to bring the density back up again (if thats possible?) Have had numerous breaks- but they tend to be fingers/toes rather than anything thats going to incapacitate me (mind you they hurt like hell).

Ask the doc about your neck pain- and do get it checked out- it could be totally unrelated- you never know- but it is worth getting it checked out. There is no point in me or anyone else speculating whether its related to the osteoporosis or not- I know I (thankfully) don't have neck pain- however that means precisely nothing. Get it checked out.

essgee268

Had check up yesterday, im feeling very well on infliximab since before christmas, but my consultant has started me on imuran 175mg and pedisdalone 30/week 25/week, to 0. has anyone had simmilar course?

The_Conductor

essgee268 wrote: »

Had check up yesterday, im feeling very well on infliximab since before christmas, but my consultant has started me on imuran 175mg and pedisdalone 30/week 25/week, to 0. has anyone had simmilar course?

Have you discussed with your consultant why he is changing your regimen? When you say you're feeling very well- I'm guessing your consultant has been doing blood tests- has he given you the results of the tests?

I haven't been on infliximab- I have had long term imuran/prednisolone courses however, though now I'm off them altogether.

You really need to discuss with your consultant why he or she has felt the need to change your regimen- especially if its working for you- though obviously it could be that while you're feeling well, your blood tests could be telling an entirely different story.

essgee268

smccarrick wrote: »

Have you discussed with your consultant why he is changing your regimen? When you say you're feeling very well- I'm guessing your consultant has been doing blood tests- has he given you the results of the tests?

I haven't been on infliximab- I have had long term imuran/prednisolone courses however, though now I'm off them altogether.

You really need to discuss with your consultant why he or she has felt the need to change your regimen- especially if its working for you- though obviously it could be that while you're feeling well, your blood tests could be telling an entirely different story.

bloods are perfect CRP 0.7. His reason being that imuran is better long term than infliximab

The_Conductor

essgee268 wrote: »

bloods are perfect CRP 0.7. His reason being that imuran is better long term than infliximab

It depends on the person- different people tolerate different medications in different ways. I was on Imuran for years- literally years, I'd guess 4-5 years, before I developed an intolerance to it (more a hypersensitivity actually), and my white cell count crashed. It sounds like the consultant is tailoring your regime to suit you- which with good monitoring, is the way things should be.

Stephen P

Just a quick update. I went to see my consultant today and I'm getting a bone scan shortly
I'm also starting on Imuran. They said I've to cover up with sun screen factor 50 (even in the winter) when out in the sun. I'd love to hear from people who are on Imuran. How has it been for you? Any major side effects? Does it affect fertility at all, in any way? The consultant said it won't, but I'd like to hear from anyone who actually takes it or took it in the past.

Turtwig

Stephen P wrote: »

Just a quick update. I went to see my consultant today and I'm getting a bone scan shortly
I'm also starting on Imuran. They said I've to cover up with sun screen factor 50 (even in the winter) when out in the sun. I'd love to hear from people who are on Imuran. How has it been for you? Any major side effects? Does it affect fertility at all, in any way? The consultant said it won't, but I'd like to hear from anyone who actually takes it or took it in the past.

On Imuran with over two years. Oddly enough never even consider to ask or research the fertility side of things. To be honest apart from annoying irksome sore throats and possibly other ailments due to a weakened immune system. I've nothing against Imuran. You'll very probably be prescribed Calcium reinforced with Vitamin D supplements to combat its bone marrow affects. It mostly, (mostly) kept things under control for me. I still had flare-ups now and again but in terms of the level of severity going on Imuran seemingly coincided with a significant increase in my quality of life.

Going through one unpleasant whopper of a flare up at the moment though so I don't know if what the current situation with Imuran will be.

Stephen P

Thanks for the info.
They might wait until after I have the bone scan to put me on Calcium/Vitamin D. I generally take those anyway but haven't for a few weeks.
I need to more searching but what I've read on the web it doesn't appear to affect fertility but I need to do more research.

Hope you feel better soon

Jernal wrote: »

On Imuran with over two years. Oddly enough never even consider to ask or research the fertility side of things. To be honest apart from annoying irksome sore throats and possibly other ailments due to a weakened immune system. I've nothing against Imuran. You'll very probably be prescribed Calcium reinforced with Vitamin D supplements to combat its bone marrow affects. It mostly, (mostly) kept things under control for me. I still had flare-ups now and again but in terms of the level of severity going on Imuran seemingly coincided with a significant increase in my quality of life.

Going through one unpleasant whopper of a flare up at the moment though so I don't know if what the current situation with Imuran will be.

LucyBliss

I've been on Imuran since 1996. I'm lucky in that I never had any bad side effects from it. The first year all right, I caught two horrendous head colds that nearly knocked me for six but since then my immune system seems to have adjusted, if that makes sense, and any colds since have been pretty easy to deal with.

It seems to be the go-to long term drug because it does work for the majority. From 1996 to 2004, I was in remission and then I had a terrible flare that lasted until I had my large intestine removed in 2008. They upped the Immuran and put me on Pentasa and Infliximab. Now I'm back on Imuran on a low maintenance dosage.

In all the years I've been on it, fertility hasn't come up because, and not to be TMI here, but when I finally was ready to think about settling down and having kids, my bloody insides starting playing havoc on me and I was in such pain and running to the bathroom so often that if anyone had come near me with a twinkle in their eye, they'd have gotten lamped for their trouble! But from what I've heard, there usually aren't any issues.

CathyMoran

Stephen P wrote: »

Just a quick update. I went to see my consultant today and I'm getting a bone scan shortly
I'm also starting on Imuran. They said I've to cover up with sun screen factor 50 (even in the winter) when out in the sun. I'd love to hear from people who are on Imuran. How has it been for you? Any major side effects? Does it affect fertility at all, in any way? The consultant said it won't, but I'd like to hear from anyone who actually takes it or took it in the past.

My husband was on Imuran for years (he is not on it now) - we have a 16 month old and a 30 month old...

sbrk

Hi, I'd love to hear from anyone who has tried the specific carbohydrate diet and had success with it,thanks

Dan133269

Hello people,

Just wondering has anyone had any success with finding suitable health insurance to cover their Crohn’s disease? I know most insurers won’t cover any pre-existing medical conditions as it is simply not worth their while economically, and if they do, they will want astronomical premiums. Has anyone managed to find some way around this? Insurance through work or anything like that?

I’m not living in Ireland at the moment, but just wondering about the situation if I come back. I don’t want to be unprotected and having to shell out a lot of money just for medical treatment.

Janedoe10

Coverage for pre-existing conditions is standardised now .

See the following links http://www.citizensinformation.ie/en/health/health_insurance/private_health_insurance.html


http://www.euro.who.int/__data/assets/pdf_file/0006/98448/E84885.pdf

https://www.vhi.ie/info/switch_important.jsp

U would be best checking with the health authority directly on this eg VHI has a global policy global-health-insurance/index.jsp

The_Conductor

Dan133269 wrote: »

Hello people,

Just wondering has anyone had any success with finding suitable health insurance to cover their Crohn’s disease? I know most insurers won’t cover any pre-existing medical conditions as it is simply not worth their while economically, and if they do, they will want astronomical premiums. Has anyone managed to find some way around this? Insurance through work or anything like that?

I’m not living in Ireland at the moment, but just wondering about the situation if I come back. I don’t want to be unprotected and having to shell out a lot of money just for medical treatment.

There are standardised rules governing health insurance in Ireland- which apply to all. In short-

1. Once you commence health insurance with an Irish insurer there is an automatic blockout before your coverage becomes active. For an under 55 year old- you have to have had 26 weeks of cover, before an insurer will consider a claim for a new accident or a claim not relating to a pre-existing medical condition.

2. In relation to pre-existing medical conditions- there is not automatic cover for pre-existing conditions from any insurer. Most operate a waiting period for any pre-existing conditions- based on age. So for an under 55 year old, with Crohn's, taking out Irish health insurance- they are covered for any new illnesses after a period of 26 weeks, and any pre-existing conditions after a 5 year period.

In short- your Crohn's would not be covered on a new Irish health insurance policy for 5 years. If you decide to change insurer- the lock-out period served with insurer number 1, counts towards insurers number 2 lockout period- you don't have to serve two separate lockout periods.

I know its probably not what you wanted to hear. What many people coming here from the States and elsewhere do- is maintain their US (or whatever) cover with a global add-on, and pay a separate Irish low coverage plan, until such time as it suits to move to an Irish plan that suits their needs (often at the 4.5 year mark- to get the 5 year lockout sorted).


Edit- you are of course entitled to public health care- irrespective of whether or not you have private cover. The going rate for hospitalisation is 100 for A&E and E75 per day for a public bed (if you're admitted). Its not salubrious, but when you're ill, being in the best private hospital means very little, its the care you're given that matters. Public healthcare in Ireland does work in most cases........