Crohn's Disease

CD.

On the steroids for a few weeks now, and so far have been quite lucky. The hunger struck over the past few days and that seems to be the worse of it so far in terms of side effects (yay) though I have been fairly tired lately which is no fun and pretty sure my face is getting bigger (though that could easily be in my head (no pun intended))

I did get really dizzy the other morning, thought I was going to throw up/pass out had to lie down on the floor (it was tile, felt like I was seconds away from passing out and didn't want to crack my head open) and after a few seconds I felt fine. Did anyone else expierience this on steroids? felt fine since but if it happens again I'm gonna ring my GP for an appointment to make sure everything else is ok.

Lately I've been kinda paranoid about every twang and pain, did anyone find that on steroids problem foods were ok? I've been trying to keep a food journal but kinda wondering if there is any real point while I am on steroids then I'll be going onto something else so it kinda seems self defeating. If the steroids keep the symptoms away, as will the other medication, will foods I am eating now be fine, but later on be problems.

I'm also paranoid that now that I know it's there, that it will get worse. I know it's ridiculous logically and that it would progress if I hadn't known about it anyway and that now that I know I can take steps to help keep it to a minimum with interfereing with my life.

The_Conductor

CD. wrote: »

I'm also paranoid that now that I know it's there, that it will get worse. I know it's ridiculous logically and that it would progress if I hadn't known about it anyway and that now that I know I can take steps to help keep it to a minimum with interfereing with my life.

I'm convinced that stress is at least as important factor as other environmental variable when trying to control Crohn's. There isn't any fast and ready rule book that says if you do x,y,z that it won't spread and you won't relapse, its more a case of-

Eat healthily and exercise when you're able to
Try to manage your stress levels in all aspects of your life
You will need more sleep and more rest- listen to your body when it tells you this
You can get away with eating things that would normally spell disaster for you- when you're feeling well- the temptation is there to eat them when you're also not feeling well
Allow yourself plenty of time to do whatever you need to do in work, at home, socially etc- do not set unreasonable or unrealistic targets for yourself.

You do have some limitations that someone who does not have Crohn's disease might not necessarily have- don't try to run roughshod over what you know you can comfortably do- yes, you might make that important deadline or whatever- but at what cost?

People do not see a visual illness when they meet someone with Crohn's Disease- and have unreasonable expectations of what to expect from you in everyday life. You don't need to explain yourself- but dissuade them of these notions by whatever means you need to use.

Studies have suggested that exposure to a smokey environment can be a trigger for a relapse in some cases, as indeed can alcohol consumption- other studies suggest that low consumption of alcohol- as in 1 drink- not a bottle of wine, can be helpful........

Don't read the forums about ulcerative colitis- while it may be related to Crohn's Disease- it seems to have an entirely different set of rules.

LucyBliss

smccarrick wrote: »

You will need more sleep and more rest- listen to your body when it tells you this

This, this, this. So much agreement with This! For so long, I'd be giving out to myself saying why are you so tired, you haven't done anything to make you this tired, people will think you're lazy, get up now and do things, rinse, lather, repeat! And then I'd put together a crazy schedule and be so wrecked tired trying to keep going and put a brave face on my fatigue that a few times I'd end up crying miserably in a corner.
It wasn't until I started going for cranial sacral therapy that the therapist told me that I was doing myself no favours and that it was crazy to be holding myself to the same standards as other people when those other people didn't have Crohns attacking their innards.
So I started listening to the signals and I got on a lot better in my day to day life. You can still do things, don't get me wrong. I've held down busy jobs that had a bit of stress in them, you can't always avoid that but I learnt to manage the stress - when I worked in the cinema, the staff told me they considered me the calmest manager they'd ever seen when things went wrong. But that was only because getting worked up would have sent me straight to the loo's, not the place to be when films break down and customers are demanding to talk to you! I've travelled abroad, seen the sights and enjoyed myself. It was just about pacing myself and being sure to eat and rest when I needed to, regardless of other people. You learn what works for you and what doesn't when it comes to food and what can trigger a sense of being unwell.

As for steroids, I ate all around me when I was on them. And I enjoyed every minute of it! I could eat a lot of what used to bother me when I was in a bad way. I hadn't had a ham sandwich for so long when I started on steroids again in 2007 and the first one I had, I nearly collapsed from sheer delight! Talk about being a cheap date. ;-)
I always found that being on steroids damped down the symptoms so I was fine with a lot of problem foods. Yes, there might have been one or two that would make me uncomfortable - I had a problem with garlic and anything that tended to be in any way spicy. But when I came off the steroids, I had no issues from what I'd eaten during that time. When I was on my more regular medication, I steered clear of a lot off foods and found that there were some I could eat in moderation or could eat for maybe two days in a row but then would have to take a break from. It's really trial and error at the start (small comfort there, sorry!) and it's different for everyone. For example, carrots are generally regarded as being easy for Crohns people to digest but I know a woman who couldn't touch carrots to save her life but she was fine with onions, which gave me awful trouble. It's funny the conversations you strike up with people when you're waiting for a remicade infusion!

CD.

LucyBliss wrote: »

As for steroids, I ate all around me when I was on them. And I enjoyed every minute of it! I could eat a lot of what used to bother me when I was in a bad way. I hadn't had a ham sandwich for so long when I started on steroids again in 2007 and the first one I had, I nearly collapsed from sheer delight! Talk about being a cheap date. ;-)

Lol! when I got home from the hospital I was like right, I'm going to eat healthy, no takeaways ever, bout two days later my sister suggested we get chinese and apparently my face lit up, I do admit to being super excited about it! It would seem banning myself from something leads to me craving it :rolleyes:

I also seem to be craving rice, in any form. boiled rice with a bit of salt is awesome.

I did find that being hungry does not agree with me, if I'm hungry and don't eat or go to long without eating (hunger pangs seem to vanish if I wait a bit) I get stomach cramps that only go away once I've eaten. Its very strange.

I was supposed to go out yesterday but I couldnt and had to cancel, I knew if I went I'd fall asleep on the bus and went to bed early I felt bad cancelling but it wouldn't have been fun for me or the people I was meeting up with. I'm fairly lazy anyway so thats not a problem for me though I'm trying to figure out a way to start exercising without over doing it. Tonight I went to the cinema and I'm absolutely wrecked, but all I did was sit there for two hours! It's insane and a little unnerving. I'm going to be earlier, getting up later and still feeling tired.

I'm quite lucky when it comes to stress in some ways, like college work does not stress me out at all, generally I do essays the day they are due and have no problems, exams and the like are no bother, don't stress at all. However I do tend to get stressed over strange things, like meeting up with people, until I am actually there I have a general nervousness about it all/stressed meeting new people so will have to figure out a way to deal with that. Other than that a lot of things don't phase me that much so that kinda helps a lot.

Thank you both for replying it is really helpful and I'm sure your like dear jesus, this again but thank you both.

LucyBliss

I'm sure your like dear jesus, this again but thank you both

Not a bit of it! We're only too happy to give a helping hand, especially as steroids can be a mixed bag. They ease your symptoms but can make you feel like a ravenous crazy and you know you're being irrational but you really can't help it. That was my experience anyway. Those big bars of Cadbury's Bubbly chocolate were my thing. I used to go through so many of those, it was this craving I could not satisfy. And then I'd freak out over the littlest thing. The day I noticed that someone had put a book back on the bookshelf and it was in the wrong place, well you'd think they'd insulted my religion from the way I was carrying on. And I knew I was overreacting and I said as much as I apologised to my family, but the apology directly followed the ranting so it was said with the same wild gesticulating and in the same loud tone of voice so I'm not sure how much of an apology it actually was.

My point is, a lot of us here have been there and we had questions and worries so who better to ask, eh?!

As for the tiredness, it could well be a bit of treatment trauma. Your body is taking in these strong pharmaceuticals and it's working to deal with the illness. Just go with the flow, like you're doing, and it'll even out to some degree. Don't force yourself to exercise if you're not ready. But you could always do some short walks to keep yourself in the exercise groove and increase the length of time as you go on.

The_Conductor

My own speciality was eating a whole demi-baguette with a full pack of rashers. It might not seem all that much to many people- but when you haven't been able to eat for ages- its heaven on earth........ Unfortunately, I've eaten too many of them, and haven't gotten enough exercise, though with 2 young kids thats going to change

Make sure you get your bloods done regularly- obviously as you've Crohn's- your B12 is going to be an issue- but there can be other complications- I have problems despite getting numerous transfusions and iron infusions, getting my haemoglobin above 10- and it has been below 3- which makes even a sedentary walk a weird experience- never mind getting up from a chair and the constant risk of literally falling over.......

Life can be interesting........

CathyMoran

My husband has crohns, I am ashamed to say that I did not fully understand the fatigue that my husband gets until I got ill myself with another gastrointestinal complaint. I find it hard seeing that my husband can be in considerable pain with his condition. We are keeping an eye on our two young children so that at least if anything does happen to them they will be diagnosed early. I just wish that I could help my husband...

CD.

@lucybliss, the irrational anger is strange, I've only freaked out once so far, so I'm hoping that's it. I have been getting grumpy over things, but the first day out of hospital had a headache and one of the dogs was wandering around the sitting room and his nails were making so much nosie on the floor I wanted to break his legs, but at the same time I was feeling that I knew that it wasn't that loud and the dog can walk if he wants to and I was being completely insane & horrified by what I was thinking, like I feel bad if I have to kill insects.

I'm hoping it will even out, though I'm not on the steroids too much longer (I hope) going to consultant on the 22nd of this month so should be getting moved to something else, he said he doesn't like using steroids long term. Think he said about Azathaioprine so hoping that will work/go well and I won't have to cycle through a load of stuff to find something that works

@smccarrick I did have normal levels of iron before, but dunno what it'd be like now. I used to give blood semi-regularly (goodbye to that) and I havn't had a problem with low levels of iron but it is something I should mention to the consultant because they did say I would have problems absorbing stuff and my protein was very low, it never occured to me to ask about monitoring levels of that kind of stuff.

@cathymoran, from what I've read of the thread you seem to be extremely helpful (and devoted) to your husband and being there in itself is probably an immense help.

Northern Monkey

Hi everyone,

I have a couple of medication related questions. I have been on Entocort for about 2 months and started Imuran 2 weeks ago. I went out on the bike yesterday for the first time in about 3 weeks (so the first time since I started imuran) and I was completely shattered after about 5 or 6 miles! Could this be imuran related? or just down to my lack of fitness:o (Prior to my 3 week lay off I had been out 2 or 3 times a week for the couple of months)

Also we are looking at booking a holiday at the minute to go away mid-end September, originally this was going to be to New York and the consultant said that it would be fine to go there when on Imuran but to wear a high factor sun cream when out and about... our plans have now changed and we are thinking about going to Dubai and Singapore, do you reckon the same logic of high factor sun cream would apply here?

Sorry I know these questions should be directed to my consultant, but I think he is currently on holiday and we are hoping to book the holiday this week.

Cheers,

Enda

LucyBliss

Northern Monkey, I started on Imuran back in 1996 and to be honest, I can't recall if it made me tired. I do remember getting one of the most rotten colds I've ever had in my life and I put that down to the fact that it's an immunosuppressant and that my system was getting used to the new levels. Haven't had a cold that bad since, touch wood. So maybe the bit of tiredness is your system's way of dealing? I would just keep an eye on any tiredness levels and just do what you can for now. If you feel absolutely shattered all the time, then go to your consultant for a blood test.

As for the sunblock, yeah, I was told that too by my consultant some years ago. When you're on Imuran, I don't think it's any harm to err on the side of caution and wear a high factor sunblock regardless of whether you're home in Ireland or abroad. I usually go for factor 30/50 on my face and 30 on my arms and legs. I wouldn't be one for lying in the sun but you can get burnt easily enough just walking around in some places. Even in winter, it can be no harm to throw on a bit of it on your face because of the UV rays.

The_Conductor

I was on Imuran for almost 5 years, before my white cell count crashed, and I was taken off it. I wasn't specifically tired taking the Imuran- I was exhausted a lot of the time- but I could very easily trace this back to whether my Crohn's was active or not, and how active it was.

If you are experiencing any sympthoms that aren't normal for you- regardless of what they are- you really need to be discussing them with your gastroenterologist- what might be a normal reaction for me (or lack of reaction) could be totally different in you- there simply is no way of telling......

Northern Monkey

Thanks for the comments, it looks like it was just a lack of fitness/tiredness on Sunday. I was back out on the bike this evening and didn't have any issues!

degrassinoel

Heyas, havent posted in ages hope all are well, relatively anyway!

just pulled through another month(or so) long flareup, not so much pain this time around as it was waking up 5 times a night to read stephen king on the jacks for half hour bouts. That really doesnt get any easier does it?

Thankfully its over now for the time being, just need to get my sleeping pattern back on track again

The_Conductor

degrassinoel wrote: »

Thankfully its over now for the time being, just need to get my sleeping pattern back on track again

Haha......
I needed a laugh!

degrassinoel

i guess you were up late last night too

CD.

had an experience of first time pain when eating.
I went out drinking two nights in a row (was fine after the first night, but kinda knew I shouldn't go out the second night.) While drinking it started to hurt every time I swallowed and I finally gave up and just went home (tried to out drink it. I really don't know what possessed me at all, I think by that time I was kinda tipsy and just thought ah it's heartburn, I'll get through it or something)

really really angry at my own stupidity more than anything else, really don't know why I didn't stop or go home earlier. The past few days have had pain while drinking anything other than water/eating something really watery like stew/soups, but solid enough food hasn't been too bad.

Its stopping now and a lot milder but really understand why people would start to avoid food completely. I was also passing blood, which really isn't as scary as it should be at this point.

Had an appointment with the consultant on monday and mentioned it too him, he didn't seem overly concerned as it was only when I was eating rather than constant pain or anything and there was no pain when he put pressure on my stomach plus still on steroids which seem to be bringing it down, still on a fairly high dose at the moment, but tapering down (thankfully!).

Started Imuran too and don't seem to be having any side effects. felt a bit nauseus the first day but after that I've been fine, so hopefully there won't be anything else, but building up the dose and I've seen that some people have had trouble the higher the dose. Not looking forward to the weekly blood tests at all. I feel faint when I see my own blood, every elses' blood is fine, it's just my own. though I do seem to be doing better on it.

Still can't believe that I did that with the drink, it was something so stupid/easily avoidable but I've learned a lesson at least!

And finally, in my long winding rant, have to ring blood donor place to get my name taken off the bone marrow donation registery, of all the things that have annoyed me about crohns this is the biggest cos it was such a struggle to convince my parents that i'd be fine/safe joining it and in a weird way I feel guilty for taking my name off even though I KNOW that I could never do it and it will make things easier for them in their search rather than having to ring me or send out a letter and me say oh, actually, can't do it. BLARGH.

ok. sorry. rant over for reals this time.

Northern Monkey

CD, it sounds like you are in a fairly similar place to me medication wise. I have been on Imuran for about a month and I'm due to go up to 100mg this week, so far so good with it (and the steroids which I have been on for about 3 months) before starting it I had stomach pain pretty much every day and now it is fairly infrequent although my bowels have become looser (which the consultant says is due to the inflammation going down). I have also started taking cod liver oil as apparently omega 3 is good for the inflammation.

The Rook

So I have a provisional appointment for surgery next Tuesday (which fingers crossed won’t be postponed like my original date for surgery at the start of June).

Basically they plan on slicing me open, taking a few parts of my colon out, giving me a (temporary) stoma, and fixing me up again and reversing the stoma when the internal wounds heal in a few months time.

Anyone here had a similar thing done? If so how temporary was the stoma?!!!

The Rook

So I have a provisional appointment for surgery next Tuesday (which fingers crossed won’t be postponed like my original date for surgery at the start of June).

Basically they plan on slicing me open, taking a few parts of my colon out, giving me a (temporary) stoma, and fixing me up again and reversing the stoma when the internal wounds heal in a few months time.

Anyone here had a similar thing done? If so how temporary was the stoma?!!!

CD.

Northern Monkey wrote: »

CD, it sounds like you are in a fairly similar place to me medication wise. I have been on Imuran for about a month and I'm due to go up to 100mg this week, so far so good with it (and the steroids which I have been on for about 3 months) before starting it I had stomach pain pretty much every day and now it is fairly infrequent although my bowels have become looser (which the consultant says is due to the inflammation going down). I have also started taking cod liver oil as apparently omega 3 is good for the inflammation.

At the end of the month I'll be on 200 mg (i think, would have to double check)
I'm also taking fish oil, the dietician/nutricionsit in the hospital told me that it helps reduce inflammation I believe her exact words were "We don't know how it helps, it just does" reassuring eh? :P
Also, just noticed my username is the initial of Crohns Disease, but i chose it ages before I even knew I had it/what it was. strange.

@the rook, good luck with the surgery! I hope it goes amazingly, awesomely well!

allanmathews

http://www.facebook.com/groups/106491930028/

This group on facebook is for anyone that is suffering from IBD or any friend or relative of that person

swan19

Hi everybody im new to boards. I have just been diagnosed with Crohn's. I'm 23 and reading other posts i don't think i have it as bad as i thought.

It started in Jan where i had a very large peri anal abscess that had to be removed...i then had a long wait for a colonoscopy and when the day finally came..i woke up during it because the sedative wasn't strong enough and my inflammation was pretty bad...so had to come back in on the thursday to have it done under general anesthetic..they found a fistula during it and removed it...they took biopsies and i got my results on tuesday...

so its official...I have Crohn's..pretty upset about it and feel kinda lost regards what foods to avoid..feel like the doc didn't tell me much other than its down to the individual...i am low in B12 and blood folate..so im on a multi vitamin...folic acid..dipentum twice a day and now steroids for the nxt 3 months starting off at 30 mg reducing every week down to 5...

is there anybody out there who is a smoker and has crohns..iv been warned to giv them up but finding it hard!!! Also is Alcohol a trigger for flare-ups??? The only thing that i noticed i can't eat are white rolls!! I find it hard to pin down what causes pain because i was so used to it and thought it was normal..if that makes any sense.

Do ye think its a good idea to go to a dietitian? Sorry for the long post..i'm just feelin lost at the moment...and its hard to talk about it to people who don't have it or know what its like..thats why i joined here to learn from people who are going through it aswell.

CD.

swan19 wrote: »

feel kinda lost regards what foods to avoid..feel like the doc didn't tell me much other than its down to the individual...i am low in B12 and blood folate..so im on a multi vitamin...folic acid..dipentum twice a day and now steroids for the nxt 3 months starting off at 30 mg reducing every week down to 5...

is there anybody out there who is a smoker and has crohns..iv been warned to giv them up but finding it hard!!! Also is Alcohol a trigger for flare-ups??? The only thing that i noticed i can't eat are white rolls!! I find it hard to pin down what causes pain because i was so used to it and thought it was normal..if that makes any sense.

Do ye think its a good idea to go to a dietitian?

I was just diagnosed recently too, and though I am far from an expert, I figured I could share what I've learned.

In regards to food, it is unfortunately down to the individual, what might be fine for me might hospitalise you and vice versa. Keeping a food diary and how you feel each day in regards to pain might help, and after a while you will notice a pattern and reactions from certain foods.
so you have a salad, and get cramps and diahrea or whatever and then the next day you have a sandwich with lettuce and the same thing, then a few days later you eat a ceasar salad and get the same and the only common factor has been lettuce, then you can cut out lettuce and see if that takes care of it.

Steroids can be pretty crappy, but try to remeber you're only on them for a short time so it will pass and it will help bring down inflamation/symptoms.

I don't smoke but it can cause problems and trigger flare ups, while it is difficult, have you tried patches/chewing gum/those inhaler things? you could always try hypnotherapy, I know a few people who stopped smoking with that. Maybe if you get a craving think of the pain that you've gone through and think is it really worth that pain for a few seconds of pleasure/relaxation etc etc it might help fight off the craving.

In terms of alcohol, it is again individual, I don't drink beer so havn't had any experience with that, I only drink vodka. I found I'm fine for a single night out, but two in a row shouldn't be done, I get horrible pain when drinking anything other than water/eating anything very liquidy like stew.

Once again it's all down to a bit of experiementation, maybe try it in small doses at home (when it's safe to drink/if it doesn't interfere with meds) and see how you go, then you know how you'll react or have some idea of how you'll react on a night out. Some people are fine with beer and can't have spirits, some are fine with spirits and can't have beer and some alcohol is a no go.

I get where you're coming from with the "it's normal thing" the past year or so I had a general low level tiredness no matter what, regardless of how much I slept or any other factors, then I started getting treatment and while I do have days when I am tired there are ones where I feel normal again and it's strange because I'd gotten so used to it that just feeling normal makes me feel like I've loads of energy.

As I said the food diary should help determine problem foods. You could always find a few safe foods, that you know what cause problems then slowly introduce more foods maybe one every two-three days and you'll be able to pinpoint problem foods faster because it will have to be one of the new things that was recently introduced.

In regards to dieticians, go to one who knows about IBD/has some experience with crohns/colitis as they'll be more help and have a better idea of foods that are problems for a larger number of people. I had a visit from a dietician while in hospital and didn't really find it very useful, though she did know her stuff and everything I wouldn't feel the need to seek out a dietician again, but you might find it different.

One of the most annoying things about crohn's (for me) is how different it is person to person. It would be so much easier if it was a case you're given a list and told to avoid the following and you'll be fine rather than having to find out yourself.

I hope I've helped somewhat!

swan19

Thanks a million CD..and thanks for sharing your own experience..I think the worst thing for me is the fear of the unknown..I'm terrified they might have to remove part of my colon and i'll end up with a bag or something..but i think thats worse case scenario. I just worry about whats going to happen next.

The only good thing i can take from it is that i haven't lost any weight and i have such a good appetite..i mean i eat like a horse and from my reading that doesn't seem to be typical of crohns so i might only have a mild case so i'm hoping the tablets will stabalize it for me and its the end of it.

I did ask the doctor was there a high likely hood that i will get more fistulae and abscesses and he said yes more than likely.. so thats dissappointing. Have you had these and how many times?

CD.

swan19 wrote: »

Thanks a million CD..and thanks for sharing your own experience..I think the worst thing for me is the fear of the unknown..I'm terrified they might have to remove part of my colon and i'll end up with a bag or something..but i think thats worse case scenario. I just worry about whats going to happen next.

The only good thing i can take from it is that i haven't lost any weight and i have such a good appetite..i mean i eat like a horse and from my reading that doesn't seem to be typical of crohns so i might only have a mild case so i'm hoping the tablets will stabalize it for me and its the end of it.

I did ask the doctor was there a high likely hood that i will get more fistulae and abscesses and he said yes more than likely.. so thats dissappointing. Have you had these and how many times?

I get where you're coming from, I had the same it's more worrying than being told xyz and you're fine or xyz will minimise it.

I was the same, I didn't lose any weight and it was only caught because I was bleeding and had a colonoscopy and the dr went a bit further than he normally did, then it triggued a flare up (got home/started vomiting in pain etc etc) went to hospital and they kept me in to run loads of tests to confirm diagnosis. I'm in the same boat as you in terms of thinking it's mild (or at least hoping it is!) I seemed to be fairly symptom free.
I havn't had any (fingers crossed!) yet, though I am sure there are others here who have who'd be a bit more help in how to deal with those.

LucyBliss

Hi swan19, nice to meet you, just sorry it's under these circumstances!

I find it hard to pin down what causes pain because i was so used to it and thought it was normal..if that makes any sense.

That's very true actually. It's amazing how a person will adapt and get used to feeling crappy. I had a bad flare a few years ago and everything nearly killed me to eat it and I couldn't go anywhere. Then they put back on a high dose of steroids and suddenly I was eating all around me with no pain and was able to go places and I couldn't believe how I come to consider the limitations and pain to be par for the course!
I think a food diary is a good idea. It'll give you a good idea of what does and doesn't bother you and how much it bothers you.

Steroids, while having some side effects, can be quite good in getting a flare under control pretty quickly and your 30mg and tapering down by 5 every week is pretty much par for the course. Chances are, your doctor will put you on maintenance medication to help keep you in remission and to stop any more fistulas from forming. I had fistulas too, that's what alerted me to something being really wrong and they make me shudder even now to think of them. I haven't had any since 1994 if that's any consolation so yes, they may come back but then again, they might not.
Don't worry too much about surgeries and having bits removed. You're just starting off and I would take it one battle at a time! Get this bit under control and find your trigger foods and work from there. You need to build yourself up and get into remission! Lord, I sound like my mother! Sorry about that.

When you're first diagnosed, it can be very daunting and scary. And yes, if someone hasn't experienced it *coughdoctorscough* they can seem a bit offhand with their information when you're looking for answers. But you're amongst friends here so ask away and keep us posted on how you're doing!

The_Conductor

How do people manage bleeding- and how are work when you're on a stupidly frequent transfusion regime (I was on weekly transfusions, now I'm on monthly). My big problem is my Crohn's meds have pretty much destroyed my bone marrow- and with constant internal bleeding exacerbated by the warfarin regime I'm on, I need O+ or iron transfusions ridiculously frequently. Work were quite understanding at first, but once they realised it was something that is going to last forever with me- things have gone downhill.

How do people get around working with a medication regime that work simply don't want to know about? Comments such as 'bet you're going to be far more alert and energetic' after you've had your weekly or monthly transfusion- isn't fair when your haemoglobin level is still only 7 or 8 and a normal persons is 14-16.......

Its so damn hard- when you don't look ill, but feel like total crap, to try to satisfy everyone........

Northern Monkey

My bleeding has been fairly infrequent since the begining of the year (possibly 5 or 6 times this year and even then it was only a small bit in the bowl or on the toilet paper),so I have been lucky on that front. But lately I have had days when I am so tired that it takes me ages to do anything in work. On those days I normally stick it out to lunch time and if it is quiet I take a half day out of my holidays and go home to rest.

I can see where you are coming from on the work not understanding side of things, I have had 5 sick days this year (having had a total of 5 in the 10 years previous to this with the same company) and my boss mentioned that I had the 3rd highest amount of sick days in the company for the year. Three of these days were when I was off after having an operation on a fistula (which I had a cert for two weeks off for and I worked from home for two of the three days) and the other two were when I had a blockage and was crippled with pain (for one of them I worked from home in between the spasms) so in my mind I actually only have had two proper sick days for the year. I lost the head with him and explained the above and told him next time I had a cert I would take the full time off like everyone else does and that I average about two hours a day in unpaid overtime when everyone else walks out the door at 5.30. it hasn't been brought up since

chazzywhazz

thankfully i dont have the same problem my work couldnt be more helpfull..
i even get texts to see if im ok and cards unfortunatly im up on 5 weeks absense this year due to colitis and other spur off tiredness..
If im not well the group whom im supposed to be caring for actually dont even ask me to do things with out me noticing.. i realise i am so lucky to have this job..
But the colitis can really get everyone down.. im between two minds to just get the colostomy bag save alot of pain well so the surgeons say :rolleyes:

its very risky business...

iv only had colitis with 5 years so not too long in the tooth..

Cearam

Hi!
I was recently diagnosed with crohns and have been put on detracortril steroids,imuran and anti inflammatory tabs too...! I was just wondering what side effects anyone suffers from with the detracortril...my consultant told me after 6 wks il get acne, a puffy face and prob put on weight :0(....i've been on them 4wks And no effects yet but so worried about the acne etc....just want to see does everyone like my consultant said suffer from these side effects??