Crohn's Disease

diskodolly

a hickman is a central line i think !!!???

LOL

The_Conductor

diskodolly wrote: »

a hickman is a central line i think !!!???

LOL

Yes- its the one where they do the double incision (I think).
I thought they were supposed to use anaesthetic?
I think the difference between a hickman and a regular central line is the hickman gets left there for an extended period- whereas the regular central line could be a one-off for transfusions etc.

Richard Dower

I had a hickman then, all my veins collapsed/died....had no option then.

diskodolly

i had it done down in mgar a doctor had to come up from tullamore to do it, it was more a horrible feeling of pressure i was only 17 and i was bawling. i kept saying sorry to the doctor and he kept saying stop saying sorry so i kept saying sorry for saying im sorry, ended up in ICU that nite after having a seizure my electrolites went mad i was on a ventilator for a while i dont rem much about it my sister tells me bits some bits i dont want to know. i was given last rights etc then one day i kinda woke up, im lucky to be alive. it wasnt the crohns that would have killed me but how ill my body was, that was 16 years ago.

i feel like im in therapy !!! :eek::):):):)

degrassinoel

better out than in DD

The_Conductor

Blood transfusion yesterday. 3 units O+. I can't move my neck, shoulders or back today- without severe stabbing pain. The hospital said its not unusual and take panadol or difene- that it should pass in a few days. I've never had this problem before. I guess 12 hours at a weird angle yesterday might be a potential reason for it. I didn't remember that they only put in transfusions at 1/4 the speed of the Venefor- the other Crohn's people there were gone long before me. Am off work too- as with the lowered white cell count, essentially I've no immune system Not a very happy puppy this morning.

Rachelle

Hi All

MOD SNIP
Is this a flare up or is it a tummy bug? Im feeling a bit off in general but im not sure if this is crohns or what, because as i said im relatively new to all this. I dont want to end up back on prednisolone because i hate it
Any advice much appreciated x

sam34

Rachelle,

I'm sorry but we cannot give medical advice ehre.

You need to discuss this with your doctor

Colmm23

God shane your really going through the ringer. Is taking difene good for your system though I was told never to take it again cause its so hard on the stomach and such. Hope your feeling well soon.

On an other note does anyone have any tricks to drinking that awful stuff for a barium, have to face it again on friday morning, not looking forward to it.:(

The_Conductor

Colmm23 wrote: »

God shane your really going through the ringer. Is taking difene good for your system though I was told never to take it again cause its so hard on the stomach and such. Hope your feeling well soon.

On an other note does anyone have any tricks to drinking that awful stuff for a barium, have to face it again on friday morning, not looking forward to it.:(

I don't think there is any trick to the barium- other than pace yourself. Normally the barium follow-through takes hours, but as you're normally told not to take anything for the previous 24 hours (including Imodium) often it can go through your system a lot faster and you can be in and out a lot sooner than you might think. If you've been on cortisone recently- tell them before they inject the contrast dye, as it plays havoc with your veins- as I discovered when it took 5 people to eventually find a vein.

I've not taken the difene for the pain- just bog standard panadol, it sort of numbs things a bit (until I move again). I'm one massive ache and pain today. I did get a few hours sleep in the afternoon thankfully- I hadn't gotten any the previous night, and the way I'm feeling now, tonight is probably a non-runner too......

Best of luck on Friday.

Shane

lip

Hi all.Well,finally had my surgery.2weeks ago tomorrow.Thank God there were no surprises when they got in there,ther was 2 diseases parts in small bowel which were removed and they were able to do it without having to give me a stoma,which I was delighted with,I've got away with that twice now.Very sore still,went to GP yesterday as it seems to be sorer than last week.He said theres no sign of infection but if I'm still the ame in a week he wants me to go back in to be checked,so fingers crossed!I was out 5 days post op which I thought was very quick,but they said they didnt want me getting any infections in there.
Surgeon told me not to take Humira until I see my consultant.Got app for end of July,but it was brought forward to end April.Don't like the idea of just being on 50mg of imuran for the next few months but have been told I can't get a sooner app.
Colm,I find the best way to drink the barium is to lower it as quick as possible,I know some people sip it,but I think the quicker its gone the better.Good luck with it.
Sorry,didn't read back on other posts,will catch up in a few days.

Richard Dower

It's safe to say the vast majprity have had surgery then?....are we all the % of extreme cases?, i know i am.

Ush1

These steroids are unreal, the energy you get is mental! I'm buzzing around now the last two weeks where I was always wrecked before.

And oh the simple things in life like having a solid poo!:o(sorry tmi)

Richard Dower

^ steroid effect, yeah i was buzzing around also, full of energy....aka, manic, total basketcase, hyper senseitive, least little thing i'd either get paranoid about or upset.

Steroids totally mess with your head!, the insomnia is unreal, i used to takr truckloads of valium and sleeping pills to try "come down" or just be even. Horrible horrible things!

I'm good, have been good for quite a few years now, but you never forget, it's always in the back of my mind....will i get sick again?

Does anyone just feel like a total freakazoid?, like abnormal?

The_Conductor

I agree with you about the steroids. What I found helpful- was getting up extra early to take my first dose- and then taking my evening dose early (at lunchtime) and under no circumstances, take steroids after about 2.30PM in the afternoon- as its worse than drinking Turkish coffee for having you bounce off walls.......

My wife also tells me I'm a moody bastard when I'm on steroids- that I have wild mood swings, can be narky as hell and completely OTT in my response to various situations. I've tried to shorten the courses I've been on in the last year or two- for a few reasons, including very worrying DEXA bone scans.

I take it its the enteric coated prednisolone that most of us are on? My local pharmacist was trying to tell me there is no difference, but of course the enteric coated tablets are absorbed in a different part of the intestinal tract. I was on the Budenofalk for a while (the localised version of Budenoside), but found it to be ineffectual.

S.

Richard Dower

Rachelle wrote: »

Hi All

MOD SNIP
Is this a flare up or is it a tummy bug? Im feeling a bit off in general but im not sure if this is crohns or what, because as i said im relatively new to all this. I dont want to end up back on prednisolone because i hate it
Any advice much appreciated x

Hey Rach, sometimes the symptoms of Crohn's are hard to pin down, in addition to which you're always on guard. So you'll be sensitive to every little twinge and pain and think....OMG, am i having a flare up again?

In time you'll know the difference, the pain from Crohn's will become familiar, it's a spasmic pain, it's not there continiously, it'll come in waves, your bowel will spasm, it's like a fist clenching, squeeze and release. There is a kind of rhythm to the pain.

If the pain prolongs for more then a week then have it checked out, with Crohn's whacking you on a high dose course of steroids should be avoided. Ask if you can start at a low dose, say 15-20mg, if that dosen't work or pain returns they'll up the dose for you.

I've never understood the logic of whacking your immune system with hydrocortisone 100 four or six times a bloody day!

Your body is swimming in cortisone! :mad:

Richard Dower

diskodolly wrote: »

i had it done down in mgar a doctor had to come up from tullamore to do it, it was more a horrible feeling of pressure i was only 17 and i was bawling. i kept saying sorry to the doctor and he kept saying stop saying sorry so i kept saying sorry for saying im sorry, ended up in ICU that nite after having a seizure my electrolites went mad i was on a ventilator for a while i dont rem much about it my sister tells me bits some bits i dont want to know. i was given last rights etc then one day i kinda woke up, im lucky to be alive. it wasnt the crohns that would have killed me but how ill my body was, that was 16 years ago.

i feel like im in therapy !!! :eek::):):):)

Sure who else will understand? , let it out...tis good to share horror stories, albeit a bit morbid. You've probably never told anyone that have ya?

You know the saying, easier to talk with strangers....we'll you have that + people who *know* what you've been through as they actually experienced the same thing.

Thankfully i was only in ICU once, scared the bejesus outta me!...twas after one surgery, somehing happened they said....but they never told me what! :eek:

I was only in there 24 hours, thankfully was sedated all the time, but i still woke up and looked around....i don't recomend it

Richard Dower

smccarrick wrote: »

I agree with you about the steroids. What I found helpful- was getting up extra early to take my first dose- and then taking my evening dose early (at lunchtime) and under no circumstances, take steroids after about 2.30PM in the afternoon- as its worse than drinking Turkish coffee for having you bounce off walls.......

My wife also tells me I'm a moody bastard when I'm on steroids- that I have wild mood swings, can be narky as hell and completely OTT in my response to various situations. I've tried to shorten the courses I've been on in the last year or two- for a few reasons, including very worrying DEXA bone scans.

I take it its the enteric coated prednisolone that most of us are on? My local pharmacist was trying to tell me there is no difference, but of course the enteric coated tablets are absorbed in a different part of the intestinal tract. I was on the Budenofalk for a while (the localised version of Budenoside), but found it to be ineffectual.

S.

I don't even see the non enteric ones anymore, the non coated ones are horrible!....because if you don't swallow them fast they dosolve on the tongue!, leaving are horrible taste for hours. I'd never take the non enteric ones.

LucyBliss

When I was on steroids, I turned into a shrieking harpy who screamed bloody murder if someone put a book back in the wrong place. I became obsessed with how the books were shelved. Sometimes I liked having them organised by author, sometimes by genre, by publisher, by size. It was all that pent up steroid hyperness. I'd be found walking around the kitchen at 2am or else I'd start baking until dawn. Many's the time the family came down to find muffins, cakes, etc. They say they miss the daily baked goods but not the crazy sick person that came with them. I do still bake but now that I can go out and about, I don't need baking to fill up my time like I used to.
I also bawled at every film and TV programme I watched during that time. It didn't matter if it was a cartoon, documentary, comedy, drama, whatever. I would come out of the cinema with red eyes and sniffling. And I couldn't watch Animal Planet. Once I saw anything that had a poor baby animal, I'd cry my eyes out.

I'm good, have been good for quite a few years now, but you never forget, it's always in the back of my mind....will i get sick again?

Does anyone just feel like a total freakazoid?, like abnormal?

That's at the back of my mind too. Sometimes I feel like there isn't enough time to do all the things I want to do! But this year I'm working as a Guide leader and I've decided to make plans to prepare for some big events that are coming up over the next three years in the Guiding world. I don't know what the future holds, I just don't want to be afraid to live my life. And if worst comes to the worst and I'm not able to bring the girls off on the international trips, then at least all the leg work will be done for someone else to step in and take them. It wouldn't be ideal but I'm can't sit at home afraid to try because when I was sick at home during the last flare, I promised myself I'd make good use of my time once I got back into the world.
I don't feel abnormal in the strict sense of the word, but I've decided to embrace the fact that the universe has determined a different path for me than other people around me. I wouldn't mind a bit of normalcy, having said that. And if my journey can involve a lot less pain from here on in, I'd be very grateful!

diskodolly

i know how you feel Richard, when ive been on them a while (just finished 4th short course since just before xmas) i can get panic attacks just from my heart goin so fast even when im tryin to get to sleep, and im breathing really fast, so ive to try and slow my breathing down which can be hard to do when your in work, and if anyone here has ever had a panic attack you thin maybe there something wrong with me, and then you remember your on steroids and thats why your feeling this way.

i have to have a love hate relationship with steroids cause there the only thing that works when im in acute pain.

off them now 6 days and no flare up so far touch wood.
waiting to be contacted by nurse to start the humira!!!

diskodolly

ps,
shane do you not take your steroids in one dose first thing in the morning? or would you be on a large dose, im usually on 50 mg x 2 days reduce by 5 every day then stop but have been on and off them like a yo yo, wonder is it worse to be on and off them or is it better to be on a low dose for a while.

ive osteoporosis in my lower back from the bloody things

PS.
ment to ask why you divide your dose

Ush1

I split my steroids up during the day. 2 in the morning, 2 at lunch, 2 at dinner, and 2 at 9pm.

LucyBliss

lip wrote: »

Hi all.Well,finally had my surgery.2weeks ago tomorrow.Thank God there were no surprises when they got in there,ther was 2 diseases parts in small bowel which were removed and they were able to do it without having to give me a stoma,which I was delighted with,I've got away with that twice now.Very sore still,went to GP yesterday as it seems to be sorer than last week.He said theres no sign of infection but if I'm still the ame in a week he wants me to go back in to be checked,so fingers crossed!I was out 5 days post op which I thought was very quick,but they said they didnt want me getting any infections in there.

lip, I'm so glad you got your surgery! Sorry to hear you're very sore, hopefully it'll sort itself out and isn't anything drastic.

Richard Dower

OK, i'm not shy around tough questions - does anyone have and body/sexual issues around Crohn's?....as in surgical scars etc. self conscious.....like a one night stand, you take off your clothes and the poor girl is greeted with scars all over the shop!

:-(

Richard Dower

diskodolly wrote: »

i know how you feel Richard, when ive been on them a while (just finished 4th short course since just before xmas) i can get panic attacks just from my heart goin so fast even when im tryin to get to sleep, and im breathing really fast, so ive to try and slow my breathing down which can be hard to do when your in work, and if anyone here has ever had a panic attack you thin maybe there something wrong with me, and then you remember your on steroids and thats why your feeling this way.

i have to have a love hate relationship with steroids cause there the only thing that works when im in acute pain.

off them now 6 days and no flare up so far touch wood.
waiting to be contacted by nurse to start the humira!!!

^ yeah, the rapid heart rate stuff is weird, as you say it can cause anxiety/panic attacks. you can feel every heartbeat throughout your body, you try to sleep it's just bump bump bump

kildareash

lip wrote: »

Hi all.Well,finally had my surgery.2weeks ago tomorrow.

Delighted to hear you had your surgery, Lip, and that it went to plan. Hopefully your recovery will go smoothly now.

Richard...my OH has always been told he's atypical. He didn't respond to any of the meds.
Docs weren't convinced it was Chron's until the biopsies came back from his last surgery. They just started him on the meds to see if it would help.

Anyway, he was discharged during the week. He hated being in hospital, but feared coming home. After seven/eight months in hospital this is understandable.

Hopefully we're on the right road now...emotionally I don't know if he can take anymore setbacks.

orlanemo

LucyBliss wrote: »

but I'm can't sit at home afraid to try because when I was sick at home during the last flare, I promised myself I'd make good use of my time once I got back into the world.
I don't feel abnormal in the strict sense of the word, but I've decided to embrace the fact that the universe has determined a different path for me than other people around me. I wouldn't mind a bit of normalcy, having said that. And if my journey can involve a lot less pain from here on in, I'd be very grateful!

Wow,
You're a legend LucyBliss

Been through the mill the last few months. Last September I was the fastest woman in my Athletics Club, starting final year of my degree, looking at Grad programmes and talking about "positive disclosure". By November I was housebound and December I was back in hospital. My bf said something similar to me, about having a different path to other people. You put it so eloquently though that i wont add to it

Orla

The_Conductor

Richard Dower wrote: »

OK, i'm not shy around tough questions - does anyone have and body/sexual issues around Crohn's?....as in surgical scars etc. self conscious.....like a one night stand, you take off your clothes and the poor girl is greeted with scars all over the shop!

:-(

No- I have made jokes about how my abdominal scar is like a question mark- as it loops around my belly button. I don't see scars as being an issue to be honest- you haven't lived if you don't have something to show for it, and I think most of us with Crohn's have seen a lot of things that normally you'd be a lot older and preferably not at all, before you'd ever encounter them.

A kid was laughing at my scars at a swimming pool years ago- I went over to her and told her that if she ever had kids and needed to have a cesearean that her scars would be even bigger than mine. I thought she was going to burst into tears.......

It all depends on what you're frame of mind and your body image is. I'm thrilled when I'm well enough to get out and about, and happy with myself. If someone were to say something about my scars- to be quite honest with you- I'd laugh at them.......

CathyMoran

Richard Dower wrote: »

OK, i'm not shy around tough questions - does anyone have and body/sexual issues around Crohn's?....as in surgical scars etc. self conscious.....like a one night stand, you take off your clothes and the poor girl is greeted with scars all over the shop!

:-(

Speaking as Shanes wife I have always found his scar to be very sexy, it also shows that he has more strength than most people and I am incredibly proud of him.

You never know when your health can change and he made me go for a check up which led to a diagnosis of a gastrointestinal (oesophageal cancer) over 3 years ago, so I owe him my life.

I am ashamed to say that I did not understand chronic fatigue until I got ill and that is a big regret as I pushed him too far. As it turns out I have more scars than him from my surgery and he has been supportive too.

In terms of steroids, had to take them and yes they do not half mess with you.

I think that crohns is an incredibly hard illness and I have nothing but respect for those who have the condition.

diskodolly

wow cathy you've been through the mill havent you, my gran aunt had osopgheal cancer sorry for the wrong spelling, they removed here whole food pipe ( easier to spell) and she's flying she had that op over 10 years ago she's in her 80's now and is so full of life !!! hope your in good health now.

as for scars ive been opened 5 times and call my tummy the M50 as its always being dug open !!! my boyfriend calls it my harry potter scar and he loves it he has a hairy back i think if you have scars or not everyone has a body hang u, i ware a bikini on hols i dont care when i lie down it looks grand but when i bend to get off a sun lounger it looks very wobbly so i just lie with my sarong under me and when i get up just wrap it around my tummy. i been through to much to give a F**k
:cool: