Crohn's Disease

LucyBliss

orlanemo wrote: »

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

Thanks Orla, that's always nice to hear!

I'll be honest, it does bother me from time to time when I think that I lost nearly four years because of illness. Because I had a good job, I'd worked my way up through the ranks and gotten a good position and not long after my health went to pot and even though I tried to keep going, getting pains in your chest at work from worry about the nearest toilet and getting home and not eating all day at work is no way to live your life. And while I wasn't able to move forward, people around me were and that bothered me. I'd have liked some of the opportunities they got in their lives about work and holidays and buying houses and weddings and kids and all that jazz. Not that I think any of those things would have solved all my problems but it's not nice to feel that life passed you by for a while.
That kind of thinking does me no good however so I try to remember to count my blessings and make the best of what I have.
I was never one for casual hookups and with an ostomy bag and big abdominal scar, I'm not sure what my chances would be now. It's been a while since I had a relationship and the last few years weren't exactly condusive to forming one as all communication would have been through the nearest toilet door! So that area is a work in progress. I think the key for me is not to compare myself to other people and what they have because it never ends well and like I said, clearly my road in life has a little more medical drama than theirs does.

CathyMoran

diskodolly wrote: »

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:

Nice to hear of someone who has survived it, you dont tend to hear about that with mine...fair dues to your great aunt...I am still recovering from the surgery...being 31 weeks pregnant does not help. Tummy scar for me is not that bad, its the one on my back that makes me self conscious...its sort of funny that my hubby and I ended up both having gastro problems, though I always knew about his...was doing post grad research and got facinated about crohns as the diet is the opposite for mine for my type 1 diabetes...and then I met the wonderful Shane...

Colmm23

Hey Cathy,

Congrats on the pregnancy, you and shane will be able to debate which is a worse pain in a few weeks eh!:D

Got through my barium yesterday anyway, just downed the stuff, all six cups of it. Amazing to see your intestine on a screen, still some narrowing present and a cavity from a previous abcess. Radiologist reckons about a foot of the Small intestine is affected, illeum i think he called it, would that be where it connects to the large intestine.
So results gone off for consultation now to decide next step, surgery may be inevitable but amazingly no pain so would hesitant of letting spatulas near me yet.

Great news for you and OH ash, hope it settles down for both your sakes.

Colm

LegacyUser

Just wondering if anyone else is extremely tired? My tiredness is effecting my life now, I don't seem to be as bad as everyone else crohns wise in terms of bleeding but get the joint pain, back pain, toilet issues etc pretty bad. Really fed up today as just don't feel normal anymore. Am on steroids and mesasaline. Anyone else feel like this? Sometimes I think it would be a good idea to have some sort of counseling for this disease...it's only really now that it's sinking in that i have this forever..am usually very optimistic ...having a bad day

amdublin

Sorry to hack your thread but just thought you all would be best to help me with my query if possible...

http://boards.ie/vbulletin/showthread.php?p=64688435#post64688435

Ush1

Anybody get sorta some light chest acne when on the steroids?

diskodolly

i feel wrecked all the time esp in the mornings, get your iron levels checked, i was always low about 9.8 now i am 11.6 cant believe it best ever.
and def go for counciling you can go for any reason and its always good to talk.

its been very quite on this tread all week, i have assignment deadline moro so back to the books for me

Richard Dower

^ maybe we're all in good health? :-)

kildareash

Hey all,
just thought I'd give a little progress report.
OH is now 4 and a half weeks post op with no complications this time...TG.
This is the longest he has been home since last June, unbelievable when I think about it.
Anyway, had OP appointment yesterday and all docs seem happy with his progress to date. He can go back to work in a few weeks, if he's up to it. And driving just depends on his pain levels.
He's still weak and energy is sapped up pretty quickly, but it is slowly improving. But wound is pretty much healed, will be glad the Pub Health nurse doesn't have to call anymore. One more step forward.

He's sick of cal shots and nutritional drinks. I let him go a few days without having any of the drinks, because I didn't think forcing him to drink them was going to do him any good.
So this week he's started back having 1 or 2 a day.
But wld appreciate any tips or advice on how people drink them? Especially the cal shot, which is disguisting???

Had Dexa scan today...the difference between regional and Dublin hospital is unbelievable.
He was diagnosed in 2007...and this is the first bone density scan he's had.
The regional hospital which diagnosed him never even mentioned such a thing! :mad:
He doesn't have any joint pain that people here speak about, so hopefully the scan will be clear.

Colmm23

Thats good news ash, one step at a time. We all know it takes time but we get there eventually.

Just on the topic of Dexa scan, would it be advisable for us all to get one done even though I've not been on steroids for any extended period or does that make any difference at all?

Ush1

My appetite is just insane at this stage. I just want to keep eating and eating. Still, enjoying it all the same!:)

Richard Dower

I think i'm having a setback....been under stress last couple of weeks (i try to avoid it), and last few days i've had the spasmic/cramping pain. Kinda got panicked Friday night, rang the hospital to see if they were busy.

Part of me wanted to go in and get checked out, bigger part was really freaked at the idea...thought of being in hospital just does my head in!

But i'm sufficiently concerned to contemplate hospital, so i decided instead to self medicate, taking bigger does of steroids and other meds, see if things settle down.

Thing is, if it does then that means it's a flare up....if it comes back, it's something else....or, the meds are no longer working.

Dunno, really REALLY want to avoid hospital, prefer to be on deaths door in agony and have no choice rather then being fairly ok but in mid pain and go back in....confused.

Ush1

I'm down to four steroids a day now along with the asacolon. Had a bad poo yesterday, not terrible but not as good as I've been having. In fairness though my diets gone awful so I have to clean it back up. No more tea or take aways!

degrassinoel

all's quiet here, jaysis! dunno if thats good or bad lol

been quiet for me the last few weeks, no flareups. how's everyone else?

lip

Havent been on in weeks,all is very quiet so hopefully that means people are doing well.I'm 6 weeks post op now and feeling so much better.Had a few set backs but nothing major TG.Have been getting some pain on left side since Friday,but not too bad,think its because I am starting to do a lot more.I was so lucky to have my mother and MIL doing everything for me and the kids.Have app with consultant tomorrow and surgeon in 2 weeks,not expecting there to be any surprises.Think they will want to discuss surgery for fistula though.
Ash,I'm delighted OH is doing so well.Those drinks are awful.Its years since I was on them but I just knock them back TBH.The quicker they're gone the better IMO.I'm the same with barium and Kleen Prep.
Re Dexa scan,I only got 1 last year and I have been on and off steroids for 15 years.I was diagnosed with Osteopenia and have to take calcichews.Think its every 2 years I have to get it done now.
Hope everyones well.

kildareash

Great to hear you are doing so well Lip. I really this continues for you.

We've had another bit of a set-back, hopefully it's nothing too major.
OH has been very fatigued and pale looking for a few days, thought it was just that he had been over-doing it a bit.
Turned out his blood count was seriously low. Docs thought it might have been an ulcer or something from all the steriods and meds.
Anyway, scope was completely normal last night.
They think it may be that the imuran was suppressing his white blood cells. So hopefully it will just be a case of tweaking the meds.

geor

doin pretty well! Best i've been in a long time:)....feeling great, eating rice and spuds again in moderation.... really feel the pro-biotics are having a great effect.

Anyone who's going through a hard time, I would advise you to read Jini Patels 'Listen to your gut'. It has been endorsed by the CCFA. It has improved my quality of life hugely.

Hope you are all doing well...have courage , hope and strength...it is possible to gain control and live a normal life with this disease...

Ush1

I'm down to 2 steroids a day now. Doing okay although have noticed a bit more activity in my gut since I was down to 4 steroids but in fairness, my diet was really bad for a while there.

Anybody get really bad headaches when they are coming off the steroids?

geor

It took me 6 month to get off steroids....tapering down very gradually....had a lot of headaches and bowel problems for a week or two each time I went on lower dosage then it settled down. Once it settled down i'd give it a couple of weeks before going to a lower dose and so on....Steroids are very strong and it takes your body awhile to adjust...drink plenty of water alkso to help flush them from your system.

Ush1

geor wrote: »

It took me 6 month to get off steroids....tapering down very gradually....had a lot of headaches and bowel problems for a week or two each time I went on lower dosage then it settled down. Once it settled down i'd give it a couple of weeks before going to a lower dose and so on....Steroids are very strong and it takes your body awhile to adjust...drink plenty of water alkso to help flush them from your system.

Thanks yeah been trying to drink plenty of water. I'm finished my course of steroids now in 2 weeks and then the specialist is gonna see how I'm doing with just asacolon. She reckons I will have to go on Imuran eventually anyway because mine is so severe but the head specialist advised her not to give me it unless my symptoms come back.

geor

cool, imuran is alot easier than steroids anyhow, I was on it for 2 years and found it fine...takes a long time to kick in though....4 or 5 mths...

Take some good probiotics and minimise bread and milk and see if you notice any improvement...you may be able to avoid going on Imuran.. best of luck!!

steph86

hi,
my little brother and my uncle both have crohns diease. like you my uncle had some of his colon removed and now has to use a bag. my little bro was 7 when he was diagnosed, he was on mecaptipurine( no idea how to spell it!) for a few years but out grew it. He is now currently on inflixima, a drip that he has to have once every 6 weeks in dublin. it keeps the crohns diease at bay but has caused him psoriasis in his hair which causes large chunks of his hair to fall out. As bad as that may sound, although there is no cure for crohns it is not the worse. there are several ways to keep it at bay. hopefully you will not relapse and everything will be ok for you in the future, my uncle had his operation 30 odd years ago when he was 19, he hasn't looked back since.
if you get in contact with crumlin hospital they should be able to tell you of any support groups, there was one for kids perhaps they mite be able to put you in contact with some one.

diskodolly

all very quite indeed !!!! ive been up to my tonsills all week with work and assisgnments, have 2 weeks off at easter and cant wait,

ive had no pains or aches for 3 weeks now and am only on the Humira 4 weeks could there tag line rediscover life be true ????? cause ive been really good, have been tired though which is a side effect but that could be work.
started swimming and finding it fab !!!!!

how you doing richard did you brave A an E or did things settle down ???

bluebell1

would anyone have a recommendation for a good probiotic to start taking please, i'm a little lost.:rolleyes: thanks

Moussdog

bluebell1 wrote: »

would anyone have a recommendation for a good probiotic to start taking please, i'm a little lost.:rolleyes: thanks

Yakult is great! It's not too heavy on the stomach and did me the world of good when I was at my worst.

If you've got the stomach Glenisk is great and really healthy.

LucyBliss

I take Acidophillus. Considering all the medication I put into my system, I figure the good bacteria needs a helping hand. You can get it in the fridge section of health shops. Personally, I get it from kirkman labs. Yes, they're a US company and it has to be shipped over, but it's been cheap enough with the exchange rate over the past while and when I was on the Specific Carbohydrate Diet, it was the brand they recommended because it's free from Casein, gluten, soy, wheat, milk, preservatives, yeast, gelatin, flavorings or colorings so it was SCD legal, as they say. I have stayed on it because I noticed over the years that some of the other brands to be found in health shops do seem to have preservatives added in one form or another and if I want preservatives, I'd rather get them from some junk food that I can really enjoy!
But that's just my personal preference.

I agree with Moussdog about Glenisk. Their products are very good. If you find the regular dairy yogurt too much, they have Goat's Milk Yoghurts too. I like them a lot, they're easy on the stomach and very tasty.

bluebell1

Thank you both for recommendaiton:)

Richard Dower

diskodolly wrote: »

all very quite indeed !!!! ive been up to my tonsills all week with work and assisgnments, have 2 weeks off at easter and cant wait,

ive had no pains or aches for 3 weeks now and am only on the Humira 4 weeks could there tag line rediscover life be true ????? cause ive been really good, have been tired though which is a side effect but that could be work.
started swimming and finding it fab !!!!!

how you doing richard did you brave A an E or did things settle down ???

I went in, they didn't even do an ESR :rolleyes: which is the only indicator that'll show up, FBC and PCR are always normal. they said it was compacted stool causing the pain, i've felt a bit better the last 10 days so they may be right.

But hey want me to do the scope thing, top and bottom
Sure you know i'll be waiting 6-12 months for that :rolleyes:

diskodolly

sure i know im waiting on a scope myself, but have to say im feeling quite good on humira, have they ever suggested it to you or are you on it??

Richard Dower

So....spent 6 days in hospital, first time in years. Extreme pain last Sunday morning....i thought it was Crohn's, they had me fasting for SIX days!

Turned out it was Kidney stones....again, tbf they did alot of tests (ultrasound/IVP/x-ray) and i saw the urology/gastro and surgical teams. I got alot of conflicting opinions from each team, ergo....none thw wiser what the hell is going on.

I feel worse now then when i went in :-(