Crohn's Disease

Green Hornet

My brother got it a week or so ago and he had a sore arm for a day or two alright. He normally wouldn't mention it so it must have been sore. Passed after a day or so.

On another note, he was diagnosed about 6 months ago during a flare up. Medication (Infliximab I believe) is working excellently for him and after an initial course of steroids he is back to normal. The only thing is that his back has a bad case of spots (more like boils). Is this a side effect of the medication and does it pass?

The_Conductor

Hi guys,

Just a brief note to say I'm resigning from moderating LTI with immediate effect. I hope this forum continues to be the excellent resource it has grown to be, in the future.

Keep well everyone,

With best wishes,

Shane

lip

Ah Shane,thats a shame for us all on this.You always have the up to date info for us and great advise and wisdom.Thanks for all your replies to my posts.Best wishes and keep well.
Lisa

biomed32

never posted on this site but wish you and your wife all the best for the future

ladybirdirl

Very sorry to see you go Shane!

All the very very best to you & yours

LB

Colmm23

Shane,

Haven't posted much on the forum but I have been keeping an eye on it and I believe you have made this forum as popular as it is with your constant updates and advise. I just wanted to wish you best of luck in life and health and thank you for your replies to my post 12 months ago when I was at my lowest.

Regards
Colm

kildareash

Best of luck, Shane and Cathy,

Thanks for all the replies and for sharing your experiences with us.
I for one got alot of support from reading your posts,

Thanks
Ash

lip

Hi,just updating on previous posts.Seen surgeon today.Hes hoping to get me in before the end of the month for op,depending on beds.Couldn't tell me much other than they will take the diseased bit from the small bowel and reattach,but there could be other complications like scar tissue from my previous op.Also couldn't give a definate yes or no re stoma,but was told to prepare myself for it,which I kind of have.At this stage I just want rid of the pain.So,touch wood there will be a bed in the next 2 weeks,don't want to be out of action totally for Christmas.
My arm is back to normal after swine flu jab.
Hope everyones keeping well.

BrianJD

Thanks Shane for all your advise and support. All the best to you and Cathy for the future.

kildareash

OH is 8 days post-op now, and doing ok.
Op pretty much went to plan...they removed the two fistulas.
It was so hard seeing him so drowsy and vulnerable looking last week, had awful flash backs to what he went through during the summer.
Docs seem happy enough with his progress, which is good.
The surgical team have been first class...So here's hoping everything will go to plan.
It's been a long time since June 16

lip

Hi Kildareash,glad the op went well,hopefully your OH will be feelin much better in a week or 2.Its awful seeing someone going through that pain and discomfort.You must be exhausted too,mind yourself.Best wishes to you both.

The_Conductor

Hi Ash,

Hopefully your husband will bounce back. What I discovered after surgery was my appetite increased beyond all recognition (I was eating entire French baguettes as sandwiches)- and as I put on some weight, my energy returned, and I resumed what I considered to be a degree of normalcy in my life- doing some of the things that most people consider every day things. I would caution though- to not to try to do things (be they eating foods, different activities etc) before he is fully up to it.

Best wishes,

Shane

lip

Hi,got date for op,next wednesday.Have to ring 1st to make sure theres definately a bed,so fingers crossed.Starting to feel a bit nervous now that its nearly here,but also anxious to have it done and start leading a normal life again and get back to work.Just hope I will recover quick so I'll be in good form for Christmas for the kids.Plus my best friend is getting married 3 days after Christmas.Have room in hotel for that so at least I can lie down if needs be.
Anyway,wish me luck.
Keep well

biomed32

hey all, im not a sufferer of crohn's disease but know a bit about it scientifically, im a 4th year biomedical science student that has taken an interest in inflamation and autoimmune disease, we had a guest lecturer come in today and her work is based on immunosupression caused by helminths (worms e.g. schistosomiasis/tape worm etc) I dont know if this has ever been mentioned here before but there has been a patient trial in america on people suffering from crohn's disease and they used little worms collectivily called helminths. the best I can do for now is give you a link to an artical that I found and when I have access to the college computers again I might be able to get some more
hope it helps!!!:)

http://www.springerlink.com/content/y6503t7144001r04/fulltext.pdf

LucyBliss

Best of luck with the operation, lip! I had a panproctocolectomy in January 2008, where they remove the large intestine and the rectum, because the crohns had gotten so thick and scarred after three years of inflammation, it was basically steroids that was keeping me going. I have an illeostomy now and seriously, I have not looked back. It's so great to be able to live my life again, not to mention being able to eat proper food again. Last Christmas was the first time I could really enjoy my Christmas dinner.

lip

Lucy,thanks for that.There is a big possibility that I will need a stoma,but surgeon can't tell me for certain until they open me.I am as prepared as I can be for it,so I'm hoping to get some normality back in my life again.I spent last Christmas day on the couch in pain and when kids went to bed I went to doctor,so I really want to enjoy it this year.I know I'll only be 3 weeks after surgery,but it will be better than getting pains from the Crohns.
Great to hear someone elses story about getting ileostomy and how they feel about it.Its very reassuring,thank you.
Have to ring Wednesday morning to make sure theres a bed,but if the strike goes ahead on Thursday I think it will be cancelled.Touch wood it will go ahead and this time next week it will be over.
Biomed,will definately have a look at that article,thanks.
Take care.

kildareash

I really hope it goes ahead for you Lip.
Best of luck with everything, let us know how you get on.

That's great to hear your doing so well Lucy.

My OH is just starting back on other fluids now after last op. Had another set back, last week with another collection of fluid, but thankfully they were able to get it with a drain and he didn't need surgery.
Fingerscrossed we get him out before Christmas, because five months in hospital is starting to take its toll on him now.

LucyBliss

lip wrote: »

I spent last Christmas day on the couch in pain and when kids went to bed I went to doctor,so I really want to enjoy it this year.I know I'll only be 3 weeks after surgery,but it will be better than getting pains from the Crohns.

lip, three weeks after surgery, I was feeling fatigued and needed to lie down a few times during the day. I'm thinking Christmas is a good time to recovery because you can get yourself comfy on the couch and hog the TV. If someone doesn't want to watch the same show, you can always pull the "But I've just had surgery" card and lie there looking wan and pathetic, miraculously getting a bit better when you get the control of the remote. Just a suggestion! The waiting is the worst part, I found. I couldn't have been more ready for surgery, just to get past this part of my life where everything revolved around the nearest toilet, but I was stuck in this holding pattern. I really hope there's no delays for you. *fingers crossed*

kildareash, I hope your OH is out of hospital soon. I had to spend a month in hospital. I nearly went up the wall out of sheer misery. I missed my own space and my own things. Once I got home, my recovery really speeded up.

lip

Hi all.Well,as you probably can guess,I didn't get a bed.I am so annoyed and frustrated.Should be in a hdu at the moment recovering,instead I'm on the couch in bits.Was told the A&E was very busy and there was no bed for me.Tried ringing consultants secretary but got no joy from her,reckoned she wouldn't be speaking to him til next wednesday.Told it might be next week,but who knows.
Lucy,I fully intend on milking it for as long as I can,I'll be taking a leaf out of your book,thats for sure.
Ash,your'e really having a rough time,your poor OH.I really hope you get him home for Christmas.
Take care.

The_Conductor

lip wrote: »

Hi all.Well,as you probably can guess,I didn't get a bed.I am so annoyed and frustrated.Should be in a hdu at the moment recovering,instead I'm on the couch in bits.Was told the A&E was very busy and there was no bed for me.Tried ringing consultants secretary but got no joy from her,reckoned she wouldn't be speaking to him til next wednesday.Told it might be next week,but who knows.
Lucy,I fully intend on milking it for as long as I can,I'll be taking a leaf out of your book,thats for sure.
Ash,your'e really having a rough time,your poor OH.I really hope you get him home for Christmas.
Take care.

Really sorry to hear that lip.
They were rescheduling a lot of procedures in all the hospitals this week, because of the threatened industrial action today. Once you miss your slot- its a case of lining up the surgeon, the consultant and the bed manager again. You have to keep on top of the consultants secretary- you *need* to ensure she pushes your case.

S.

kildareash

lip wrote: »

Hi all.Well,as you probably can guess,I didn't get a bed.I am so annoyed and frustrated.Should be in a hdu at the moment recovering,instead I'm on the couch in bits.Was told the A&E was very busy and there was no bed for me.Tried ringing consultants secretary but got no joy from her,reckoned she wouldn't be speaking to him til next wednesday.Told it might be next week,but who knows.
Lucy,I fully intend on milking it for as long as I can,I'll be taking a leaf out of your book,thats for sure.
Ash,your'e really having a rough time,your poor OH.I really hope you get him home for Christmas.
Take care.

Oh you poor love, that's so frustrating. I've my fingers crossed that it will happen for you this week.

But i know the hospitals were unbelievably backed up this week.

OH had to spend Monday night and most of Tuesday in recovery because there was no HDU or ICU beds available.
I have to compliment the staff in James'...they allowed us in one at a time to sit with him on Tuesday, even tho they were really busy in the recovery area and don't normally allow visitors in.

On two seperate occassions now, his doctors have gone above and beyond the call. They have come in on saturdays, and late monday night when there has been emergencies. They have waited around until they're satisfied everything is ok, before they leave.
I'm so impressed with them and the level of care he has received from the team.

LucyBliss

Ugh, I'm so sorry and annoyed on your behalf, lip. I hope you get in there asap and get this over with.

kilderash, I'm glad your OH is getting such good care in the hospital. I hope he gets better soon.

lip

Hi,thanks for that guys.Got call today from 1 of surgeons team to say he wants me to go to tallaght on thursday.He couldn't tell me whether its just to his clinic or in for the surgery.I'll ring in the morning and hopefully get some answers.
Kildareash,glad to hear your OH is getting looked after well,its good to hear some positive stories.Hope hes making a quick recovery.

lip

Hi,no bed again today,same reason as last week.sooo p***ed off.Pain is getting much worse and lasting longer.Really beginning to think it'll never be done.It will be after christmas now anyway so I may just deal with it for a bit longer.
Hope everyone is well and looking forward to Christmas.

kildareash

Oh Lip, I'm so sorry. That's so crap.
It's so frustrating preparing yourself and your family and then be disappointed again and again.
I hope you enjoy the Christmas period as best you can and hopefully you'll get your op early in the New Year.

The_Conductor

Seriously consider either getting some help over the Christmas- or alternatively going to a hotel for a day or two. The stress over Christmas is bad and if you're feeling under the weather already and in pain- you need to try to minimise your stress levels.

Sorry to hear you're being messed around like this- hugs, S.

lip

Hi.Thanks guys.I love Christmas and really don't find it stressful TG.DH normally does most of the dinner and tidying up after while I play with the kids.I have everything else done,had to in case I was brought in,so I'm sorted and hopefully will have a stress free Christmas.
I'm thinking positively now,I may get a few days pain free,and be able to enjoy a few drinks with my neighbours and enjoy the kids.

Colmm23

kildareash wrote: »

.

OH had to spend Monday night and most of Tuesday in recovery because there was no HDU or ICU beds available.
I have to compliment the staff in James'...they allowed us in one at a time to sit with him on Tuesday, even tho they were really busy in the recovery area and don't normally allow visitors in.

On two seperate occassions now, his doctors have gone above and beyond the call. They have come in on saturdays, and late monday night when there has been emergencies. They have waited around until they're satisfied everything is ok, before they leave.
I'm so impressed with them and the level of care he has received from the team.

Hey Ash,
I just want you to know that those guys in james are second to none in my opinion. It will be 12 months on wednesday since i went back on solids after spending 7 weeks on peptanmen only diet, spent 2 months in james before that and had been in mullingar general for guts of 4 months before that. The way it was put to me in by the consultant was they'll make sure I'm right leaving hospital and when I look back in a year or 2 it'll only be a small section of my life. Anyway make sure your OH knows that there is a light at end of this very long tunnel, take it from me I know.

Regards
Colm

kildareash

Colmm23 wrote: »

Anyway make sure your OH knows that there is a light at end of this very long tunnel, take it from me I know.

Thanks Colm, It's good to hear that other people have come out the other side.
It's so hard when there is just set back after set back.
It'll be six months on Thursday since he had his first operation, but it feels like years ago.
Feels like a race against time now too, even tho we say oh christmas is just one day, all he wants is to be home for it.

But after six months of tooing and froing between chrons and colitis, they have finally decided to treat him for chrons again. A piece the biopsied after last operation showed slight signs of chrons. Hopefully, an intense course of steriods and antibiotics will help now. I feel it could be the missing link.

Richard Dower

I was diagnosed with Crohn's in 1994, multiple surgeries....but, has anyone had a Psoas abcess?....thing nearly killed me, septic shock, given last rights....the whole shebang.

Not had surgery since 2002, Immuno suppresents such as Immuran and the right combination of drugs finally put it in check.