Crohn's Disease

Riven_Sky

The_Conductor wrote: »

My biggest problem- more than anything else- is the startling amount of imodium I have to take- to avoid going to the bathroom. I must go 20-30 times a day- and during the night I wake up ever hour or so to go. I take 12-14 Imodium a day- if I didn't, it would be even worse. I also carry around changes of clothes and underwear with me- for when I have accidents. The pain- which is still there- is manageable- the bigger problem than anything else- is that I'm tied to the toilet. Thank christ there is a shower room with a toilet within a few yards of my desk in work- I'd be in even more trouble otherwise.........

Outside of that- there is the constant blood loss, the complete exhaustion- not helped by being up throughout the night to go to the toilet, and up there with the worse of all- is the comments from family, relatives and work colleagues- about how well I look (having over 20 units in a 2 month period will help there!) and isn't it great that I've been in hospital and am all cured now........ I've actually screamed at one person in work- much to the amazement of my manager one evening- thankfully there weren't too many people around- she had it coming.........

I bumped into our solicitor while going to the pharmacy yesterday- and got talking to him. One thing I need to do is a will. Before I do a will- having some sort of a vague idea of my life expectancy- would be helpful. The last day I was in hospital I got a comment along the lines of "after we've finished with you in here- you'll last at least another 10 years" (totally without any prompting from me). I'm 40- not 70 or 80. I have a 3 and a 4 year old. I want to be around for them- 10 years isn't going to cut it.

I realise that we're all unique- we have all had different life experiences- and indeed disease has effected us all in unique ways. If I go on the internet- all I see are either wonder stories or complete and utter despair- neither of which relate to what the average person, if there is such a thing, is likely to encounter.

I'd like an honest opinion from a consultant- of how long I'm likely to live. I studied statistics- I know the ins and outs of these things- I would like something I can benchmark though- which is something I don't have..........

You're absolutely right, we're all different in how this disease effects us and many of the stories you hear are the extremes. I've accepted at this point that I'm never going to get back to the level of health I was at before, that I'm never going to be 'back to normal' but I'll take going to the bathroom 6 times a day over going 20, and being in pain some or most days over being in pain every day. And I imagine, when it come to Crohn's, that that's a fairly average experience.

I have to say I don't actually know how you're doing what you're doing given what you go through on a daily basis. I managed a matter of days with that level of symptoms before ending up in A&E and being admitted.

And yes, the ignorance of other people never ceases to amaze me. I remember one relative, who knew very well how sick I was, constantly making positive comments about my weight loss.

While it's good to be practical and sensible and consider things like wills and life expectancy, I don't think any consultant is going to tell you how long they think you have to live. Even palliative and oncology consultants are hesitant to do so. Mostly because they don't know the answer. I do 100% think you should ask the question though. Because if I was a doctor and my 40 year old patient with a disease that isn't considered life-limiting was asking that question, it would be significant.

The_Conductor wrote: »

On the brightside- I don't imagine I have any more surgery on the imminent horizon (its remarkable that I have anything left in there). On the downside- I have this damn box of Moviprep staring me in the face- I guess making it up with Ribena is out of the question- and I've already been dissuaded from using 7Up- I'm smiling at the thought of watching it explode all over the kitchen floor...........

Vincents are having some fun trying to schedule the MRE on the same days as the endo and colonoscopy. The general anaesthetic for the scopes- doesn't help with MRE- and you have to drink contrast dye for the MRE- which screws up the scopes too- I guess I'll hear back again tomorrow......... If they don't schedule them on the same day- the VHI won't cover the MRE (they only cover it for in-patients- and the scopes classify you as an inpatient- because they give you general anesthetic). I could do without a 600-700 bill for an MRE ontop of everything else. My credit card took a 160 quid hit in the pharmacy yesterday- it appears they've taken more things off the 144 a month for Crohns' patients- so not only are we not getting LTI arrangements- we're also getting some of our general meds taken out of the monthly scheme too. It would be nice if the Minister for Health had a LTI- perhaps he would be a bit more understanding..........

I guess when you've had illness all your life- you do get a bit philosophical about it- but you also recognise that you're not immortal, and have to make plans recognising this.......... My wife and I both need to make our wills and get our affairs in order........

I've heard of them doing two together in the US (the scopes and the MRE). You do the scopes in the morning (under sedation though rather than a general anaesthetic) and the MRE in the late morning or afternoon as you're already fasting from the scopes. It does seem a lot to do in one day though. Plus trying to down the contrast after a prolonged fast isn't something I'd be looking forward to.

On the practical side, any chance you could swap the moviprep for picolax? As someone who has no tolerance for drinking foul tasting liquids, I can recommend it. It was the nicest tasting thing I drank on my prep day. Two small glasses of citrusy tasting liquid. The after-effects aren't much fun, but they are effective. And in between you just drink tons of a clear liquid you actually do like (not something you really like - I used a mix of lilt and 7-up, neither of which I drink often, and water.).

Trebor176

I've my colonoscopy on Monday afternoon, so I'm dreading Sunday. Monday will be a doddle, but the thoughts of having to drink this Klean Prep stuff is terrible. The last colonoscopy I had was in 2008, and was in hospital at the time. So, I guess I've been lucky enough to escape the colonoscopies up to now. It's only half a day or so on Sunday, but still. . .

The_Conductor

Riven_Sky wrote: »

On the practical side, any chance you could swap the moviprep for picolax? As someone who has no tolerance for drinking foul tasting liquids, I can recommend it. It was the nicest tasting thing I drank on my prep day. Two small glasses of citrusy tasting liquid. The after-effects aren't much fun, but they are effective. And in between you just drink tons of a clear liquid you actually do like (not something you really like - I used a mix of lilt and 7-up, neither of which I drink often, and water.).

Thanks for the tip. My scopes and MRE were rescheduled, as they had difficulty getting them all on the same day. Its now on for Monday the 27th. I also got a prescription for the Picolax, no questions asked, when I requested it from the Gastro's secretary. I was taking a roadtrip on Sunday the 26th down to an Agricultural Fair with my munchkins- I think I had better keep closer to home.

The warfarin clinic in James Connolly are being absolute saints- and have agreed to do blood tests for me everytime they're doing my INR- so I don't have to go over to St. Vincents the whole time (plus having bloods taken in two different places on the same day was proving challenging- my veins are in bits from all the Imuran).

One of the tests they accidentally did last week- was Prolactin. It was highlighted as abnormal. I guess a reading of 146 for a guy is unusual. Anyhow- its gone over to Vincents- no comment from them on it yet.

No-one ever told me that one of the side-effects of Crohn's is that we're at a vastly higher risk of developing blood clots- than the general population. Bah.....

The_Conductor

Trebor176 wrote: »

I've my colonoscopy on Monday afternoon, so I'm dreading Sunday. Monday will be a doddle, but the thoughts of having to drink this Klean Prep stuff is terrible. The last colonoscopy I had was in 2008, and was in hospital at the time. So, I guess I've been lucky enough to escape the colonoscopies up to now. It's only half a day or so on Sunday, but still. . .

Keep close to home- and if you have young children think of some way to entertain them that allows you constant access to toilets?

Good luck on Monday!

Northern Monkey

This is probably a more general question that just one for us crohnies...

Has anyone any experience with keeping on private health insurance while not in the country? I'm going to be moving to the UK with work (most likely for a couple of years), but I want to keep my health insurance policy live while I'm away so my Crohn's cover doesn't lapse. I've no intention of using it when I'm not in Ireland (NHS should cover me should I need it), but I just wanted to check if someone had already been through this before I show my hand to the insurance provider.

uck51js9zml2yt

Northern Monkey wrote: »

This is probably a more general question that just one for us crohnies...

Has anyone any experience with keeping on private health insurance while not in the country? I'm going to be moving to the UK with work (most likely for a couple of years), but I want to keep my health insurance policy live while I'm away so my Crohn's cover doesn't lapse. I've no intention of using it when I'm not in Ireland (NHS should cover me should I need it), but I just wanted to check if someone had already been through this before I show my hand to the insurance provider.

Can't see why you would even need to tell the insurers you've moved.
Just keep paying your premiums.

lulu1

Dont know if I am allowed to ask this question here but can anyone tell me what are the symptoms of cronans

Trebor176

The_Conductor wrote: »

Keep close to home- and if you have young children think of some way to entertain them that allows you constant access to toilets?

Good luck on Monday!

Oh, I'll be home, don't worry. And, there won't be any kids to entertain either And thank you

lulu1 wrote: »

Dont know if I am allowed to ask this question here but can anyone tell me what are the symptoms of cronans

Symptoms include abdominal pain, diarrhoea, blood/mucus in the stools/passing blood, loss of appetite, weight loss, inflammation and/or sores, such as ulcers, anywhere in the gut from the mouth to the anus.

For me, my symptoms were mainly the weight loss and loss of appetite. I did start to feel nauseous after eating a certain amount of food. I didn't have diarrhoea, I wasn't passing blood and wasn't in pain. I think it can affect people in different ways, either mildly or more serious. I do pass blood at times now, there has often been traces of blood of late, the back passage can be sore when passing stools (the passage seems to be narrower). At least I'm going for the scope so I'll know what's going on, and hopefully be able to ease things in the back passage and wherever there is narrowing, if any.

MORISH

Hi fellow chronsies

Just wondering ic anyone on stelara injections? I gav ed been on/off humirafor 6 years but in hindsight only had no side effects the first time i was on it which was pretty much a 3 year stint had a break for 4 months cos i was pregnant but when went back on it i developed psoriasis and ongoing cellulitis i didnt realise it was due to humira so never mentioned it to consultant for ages but when i did i was immediately referred to dermatology where they said to go on it weekly but after a whike i just stopped taking it! Didnt think my chrons was that bad so had a good while off it but the last year i got some symptoms of chrons and went back on it but once i did the psoriasis and cellulitis came back after 3 months apparently i have developed antibodies to it and they are going put me on stelara, just wondering if anyone else is on it and how they have found it? Im concerned i will start developing side effect again. Im sooo tired at the moment and am getting chest pain but consultant thinks its all down to humira antibodies. Love advice from you guys. Xxx

Nadser

I am having a colonoscopy on Tuesday morning and have been prescribed Picolax. I've to take one sachet in the morning and another at lunch time. The thing is, I really need to be in work between 1 and 2 pm (the rest of the day I can get away with). Am I kidding myself that I'll be able for it? How long does it take for the Picolax to kick in? I've had Kleen Prep before and it seemed to take a couple of hours before I was chained to the jacks. Would love to hear from anyone whose done the Picolax option.

The_Conductor

Nadser- I guess we're all different. I'm virtually chained to the toilet a lot of the time- independent of taking picolax/moviprep or anything else. Have you have surgery before? Have you had much removed? These are the sort of questions you have to ask yourself- thereafter- under normal circumstances- how soon do you have to go to the toilet after you eat? I know I'm only guessing- but I'd suggest the picolax would kick in about 4-5 times faster than normal- so if you'd need to go to the toilet an hour after eating- it would be moins three quarters- in or around 15 mins (and very close proximity thereafter........)

Nadser

I've had plenty of surgeries but nothing removed. Normally I need to go 3/4 times a day. When Picolax kicks in, will it be as urgent as taking the Kleen Prep or will it be !ore controllable?

lorebringer

Nadser wrote: »

I've had plenty of surgeries but nothing removed. Normally I need to go 3/4 times a day. When Picolax kicks in, will it be as urgent as taking the Kleen Prep or will it be !ore controllable?

Hi! Picolax/KleenPrep etc. all create the same "flushing" action - just make sure you drink enough water with the Picolax so that you will be totally clear. Stay in your house, near to the toilet! I have taken most preps for scopes and, being realistic, you will not be able to do anything once they kick in.

The_Conductor

Nadser wrote: »

I've had plenty of surgeries but nothing removed. Normally I need to go 3/4 times a day. When Picolax kicks in, will it be as urgent as taking the Kleen Prep or will it be !ore controllable?

I don't think anyone can definitively say one way or the other. It depends entirely on the person. I would need to be within a few meters of a loo- if I forgot to take my imodium (I take 10 first thing in the morning). We're all unique- however- it is a prescription grade laxative. It would be prudent to imagine it does exactly what it says- and make appropriate arrangements. I'm down for it next Sunday- a little too late for you- but not something I'm looking forward to........

MORISH

I have had soo many scopes and picolax every time and every time it is different depending on how i am feeling chron's wise at the time i think you will need to reschedule your work if possible otherwise it could be embarrassing not to say impractical not to be free to use the bathroom when you need too, trust me once the prep starts to work which is usually after 2nd sachet you cant hold on. Im a nurse and sometimes the consultant orders a scope late in the day so patients end up taking the prep later in the day and are done last on the scope list so you could phone your doctor and ask when your scheduled for and take 1st dose at 2pm and 2nd at 5pm or so but fast from food after the 1st dose and only drink clear fluids until midnight and make sure you do drink plenty because that's what help you "run clear"

Nadser

Thanks for the responses. I guess I'll skip work tomorrow to be on the safe side. I know I'm not indispensable, no-one is, but it would have been easier all around if I was there. Guess I'll just have to e-mail the boss and they can arrange cover!

Trebor176

Just over two hours to go until prep time

sammy1985

So I just found this thread and it's really been helpful. Basically have crohns since 2004, surgery 2008. Trained as a teacher but quickly discovered that my body wasn't able for the demands of it.

Recently got a job in an office (I've been there since December) but am finding it extremely exhausting. As soon as I come home, I'm wiped out and my weekends are spent sleeping trying to muster the energy for the week ahead. Does anyone have any useful tips for fatigue. Am on vit b injections, multivitamins and iron tablets already.Would really appreciate any ideas.

The_Conductor

You really need to get regular broad spectrum blood tests done.
Even unusual tests can prove worthwhile
Aside from issues absorbing Vit B (12) with Crohn's its incredibly common to have other malabsorption issues- and its also common to have other autoimmune conditions. Aside from all of that- unfortunately- being constantly exhausted goes with the territory. It can be an effort to drag yourself around the place- at the best of times.

I wish there was a magic bullet- do x y and z- and presto- you'll be fine, but I'd be lying if I suggested it........

When was your last GI appointment- and is the consultant aware of the difficulties you're going through?

sammy1985

Thanks for the reply.
Got all my bloods done there 2 weeks ago and everything came back normal. My last GI appointment was 3 weeks ago and he is aware of the fatigue I'm experiencing, but seems to be of the attitude sure it goes along with having Crohn's. It just annoys me that a lot of people think I'm being lazy when in fact I'd love to get out and do things but don't have the energy for it.

Am really thinking about going part time but don't know how I would be able to survive financially as I'm single.

smithy1981

Hey guys,
Just wondering if anyone had any experience with humira injections and cannabis? My doc says i have to give it up but it helps with my appetite a lot, I haven't seen anything online to suggest it would be a problem.

Smithy

Northern Monkey

I've no idea Smithy, but smoking in general is thought to be bad for crohns sufferers, so it might be the smoking aspect as much as the canabis that the doctor is warning about.

smithy1981

Northern Monkey wrote: »

I've no idea Smithy, but smoking in general is thought to be bad for crohns sufferers, so it might be the smoking aspect as much as the canabis that the doctor is warning about.

Sorry i should of mentioned I use a vapourizer, i gave up the cigarettes after being diagnosed. I told my doc this too. I been reading through some crohn's forums the last few days and the amount of people using it to treat the symptoms of the disease surprised me. Although i reckon half of them use it as an excuse to get medical cannabis in the states :) I'll keep reading before my next appointment i suppose, thx for the reply tho.

essgee268

I am looking for a bit of advice from fellow crohnies. I was diagnosed 8 years ago and have had 2 resections but generally in good form since last operation in march 2010. I am starting a new job in few weeks with a good package. I have worked part time for the last few years and have the medical card. I am interested in starting a health insurance package before the end of April deadline would anyone have advice for me. I am a few years over the 34 year deadline and Single. could any of you have any suggestions about what companies or plans to go on.

bc dub

smithy1981 wrote: »

Hey guys,
Just wondering if anyone had any experience with humira injections and cannabis? My doc says i have to give it up but it helps with my appetite a lot, I haven't seen anything online to suggest it would be a problem.

Smithy

I was diagnosed with Crohn's last week. The doctor asked me did I smoke, and I don't but I told him that I used to smoke a lot of weed. He said weed wasn't really an issue, that nicotine was bad for crohn's.

uck51js9zml2yt

My wife recently diagnosed with crohns and was put calcichew , pentasa sachet 2g and entocort 3mg.
She was taken off entocort after 9 weeks and told take nothing for a few days to see if symptoms return which they have.
She's seeing Jan van Leyden in the Mater and back again mid may.

Shed never smoked or drank.

Trebor176

I had my colonoscopy last week, which went fine, apart from a bit of inflammation in the small bowel, meaning the scope couldn't fit through. But, a couple of samples were taken. The Kleenprep wasn't the worst, actually. Not near as bad as it was when I first had it a few years back. I managed three or so litres without having to mix anything in with it.

Anyway, I have to have an MRE soon, but I'm just waiting on an appointment for that. I guess once the colonoscopy turned out more or less grand, the MRE results should be ok.

Keyinn7

Benton Yummy Plantation wrote:

My wife recently diagnosed with crohns and was put calcichew , pentasa sachet 2g and entocort 3mg.
She was taken off entocort after 9 weeks and told take nothing for a few days to see if symptoms return which they have.
She's seeing Jan van Leyden in the Mater and back again mid may.
Shed never smoked or drank.

Leyden is also my doctor he's a good man ! I've had Chron's since the age of 12 and I am now 23. Best a d simplest advice I can give is try not to stress (stress is so bad for Chron's even the smallest amount can lead to a flare up) and keep fit and active. The reason I'm reasonably healthy is because I'm an active and fit person.

This is also my first post in this thread but I have being following it for a good while so hi !

The_Conductor

Anyone any idea how long it takes to get results back from a TB test?
Test was done 4 weeks ago- and I got a letter back to say its outstanding and could be some time? I'm guessing its some sort of culturing that takes ages- but just wondering am I looking at a couple more weeks- or months......?
Its a prelim to going on biologics- and the only outstanding test- so I'm hoping its clear.

Northern Monkey

The_Conductor wrote: »

Anyone any idea how long it takes to get results back from a TB test?
Test was done 4 weeks ago- and I got a letter back to say its outstanding and could be some time? I'm guessing its some sort of culturing that takes ages- but just wondering am I looking at a couple more weeks- or months......?
Its a prelim to going on biologics- and the only outstanding test- so I'm hoping its clear.

I think mine was within a week. I got it done in the tropical medical bureau at the top of grafton street. I think it was called a Mantoux test or something like that. They prick your skin and then you have to go back a few days later to check if it has risen.