Crohn's Disease

irl126

Hey Everyone. Just in case you don't know, there's an Irish Crohn's and Ulcerative Colitis Support group on Facebook. Here's the link: www.facebook.com/groups/crohnsandulcerativecolitisireland/ . It's been good support to me, and the group is private so only people in the group can see what you say. Anyway, hope you're all feeling well.

The_Conductor

Just been put on a slightly bizarre low residue diet that allows all sorts of processed foods that I normally wouldn't consider touching with a bargepole..... Roll on escape from Alcatraz- my countdown has begun.........

Ladjacket

Having been told to avoid high fibre foods, I found that eating high carbs such as white bread, rice, potatoes etc was leading to weight gain, so much so that I am probably at the heaviest I have ever been.

Has anyone ever returned to eating brown bread, wholemeal and high fibre items? I am giving it serious consideration.

The_Conductor

Ladjacket wrote: »

Having been told to avoid high fibre foods, I found that eating high carbs such as white bread, rice, potatoes etc was leading to weight gain, so much so that I am probably at the heaviest I have ever been.

Has anyone ever returned to eating brown bread, wholemeal and high fibre items? I am giving it serious consideration.

I'm on a low residue diet. My BMI did hit perhaps 31 at one stage (its back down around 28 now). I've ended up with 3 blockages this year (so far) including my current hospitalisation as a result of experimenting with high fibre/lots of fruit and veg diets. Be careful- be very careful- and if you have the opportunity, organise a visit to a dietitian who is familiar with Crohn's and follow the advice she gives you.

Ladjacket

to be honest I have never really seen a proper dietician since I came out of hospital 2 1/2 years ago. At that stage I was underweight, 9.5 stone as opposed to normally about 12. She said for me to eat as much fatty foods as possible to gain weight rapidly - of course music to my ears. Crisps, chocolate, sweets, potatoes, pasta, chips, all the sort of stuff that piled on the weight.

However, since the weight levelled out, I have not seen anyone since to help me formulate a diet that would keep me healthy - for example this morning at work I had a cup of tea and two slices of wheaten bread for breakfast - then I wonder is this doing me damage in the long run.

CD.

I was recently in with the GI doc and he suggested that I go onto infliximab/remicade.

It seemed to be he was saying go off for a few weeks and research it/decide if it is acceptable to you/which kind you would prefer (injection or infusion.) and we'll discuss it fully at the next appointment.

Just wanted to know if anyone had experience with either or have tried both forms and if so which did they prefer?

I'm still pretty undecided about it all and one of my major questions when I next go in will be along the lines of is it necessary. I've only been on imuran so far, which isn't working and the doseage cannot go higher, but I seem to have mild crohn's disease. Like I have some mild symptoms, mostly related to bleeding so I'm unsure if it is wise to go for the bigger guns while I'm still mild. What if it gets worse down the road etc etc.

Anyway, just hoping to hear some people experiences with them!

degrassinoel

Bah, bloody flare-up started last night and hasn't stopped all day today. Thought i was doing well too, it's been around 6 months since my last minor flare. This one doesn't feel so minor, and I've just gotten over the flu lol

Bad luck, but it could be a lot worse. Am absolutely shattered tired with this one and it wont let me sleep.

Hopefully tomorrow it dies off a bit

LucyBliss

CD. wrote: »

I was recently in with the GI doc and he suggested that I go onto infliximab/remicade.

It seemed to be he was saying go off for a few weeks and research it/decide if it is acceptable to you/which kind you would prefer (injection or infusion.) and we'll discuss it fully at the next appointment.

Just wanted to know if anyone had experience with either or have tried both forms and if so which did they prefer?

I'm still pretty undecided about it all and one of my major questions when I next go in will be along the lines of is it necessary. I've only been on imuran so far, which isn't working and the doseage cannot go higher, but I seem to have mild crohn's disease. Like I have some mild symptoms, mostly related to bleeding so I'm unsure if it is wise to go for the bigger guns while I'm still mild. What if it gets worse down the road etc etc.

Anyway, just hoping to hear some people experiences with them!

I had the Remicade infusion from 2005 - 2007. I didn't know they could do it via injection now, I thought that was just Humira. The infusion lasted for about 2 and a half hours. It was fine. I just sat there and read my book.
Remicade can make you very tired so it's well worth giving yourself a day or so afterwards to stay in bed or go for naps if you need to. There is absolutely no point in trying to fight the fatigue after an infusion. You can't win and only end up being miserable as well as wrecked tired!

My attitude these days is that any symptom, however mild, is to be gotten rid of, if at all possible. Why should you live with bleeding? It's a sign that the disease is still active and if there is something you can take to try to get rid of it so you can go about your business and live your life. And I say this as someone who put up with symptoms for a long time that varied from mild to severe and frankly, I wish I had just gotten it sorted and spared myself a lot of time and worry.

I would consider Remicade to be more of a step up rather than a big gun. If Immuran has reached the peak of its effectiveness for you and isn't controlling your symptoms, then it might be time to try something new.

Best of luck with whatever you decide!

degrassinoel, I hope you get some rest tonight and that the flare eases up on you.

degrassinoel

Mine is nowhere near as bad as other's that post here but thanks

managed to get some sleep, feeling rather decrepit today though

Janedoe10

Does every one with crohns suffer from extreme tiredness? I have been told it is a side effect normally I battle on but some times I look like a complete zombie like I have been seriously burning the mid night oil on a week night ...my iron and b12 levels are fine so its not that ..

degrassinoel

It's quite a rare day when i actually have that getup&go that most people without crohn's have, regardless of whether I'm in the midst of a flare up or not.

Not sure if it's common to have that as a general sufferer though. I remember my GP telling me i could be suffering from depression and he prescribed a book called "The secret" which was the biggest pile of ****e i ever read. I still have that tiredness and although i may have been depressed at various points of the 12 or so years i've had crohn's the tiredness has always been there.

I've had it even with b12 injections and supplements.

LucyBliss

Fatigue is a symptom of Crohns, yeah. I know that sometimes, regardless of whether I'm in a flare or not, I just get bouts where all I want to do is stay in bed. And I'd sleep round the clock too. So I get up, go about my business but as soon as I have everything done that is priority, I'm off to bed. It doesn't happen as often now (touch wood) but for about eight years after being diagnosed, it happened about every six or so months for a week or two. Then I'd be okay again.

That's just part of the fun with Crohns!

CD.

Thanks for the reply Lucy!

I suppose your right, I've been dealing with it now so it's just become a regular thing, I see blood and my reaction is pretty much "Oh. It's fine. It does that" which probably isn't the best attitude to have!

In regards to general fatigue, I was talking to one of the nurses after my appointment and she that it's pretty much par for the course with crohns. She suggested a general vitamin suppliment might help. Exercise as well. I know it's pretty daunting, but I've been feeling better since I've started exercising and it has reduced some of my symptoms.

deano546

Hey guys only recently been diagnosed with Crohns. I'm 18, and since about Christmas I havent been great. About the time of my Christmas exams, I was really tired, going to sleep when I got home at 6 o' clock rather than studying, but I haven't been in since then anyway, so no leaving cert for me this year . Since December I've had 3 abscesses which have been drained (ouch!) and just last week had 2 draining setons put into seperate fistulas (again ouch!) so I'm pretty much always in bed whether at home or the hospital (can't sit even with those special cushions, it hurts too bad!). I'm supposed to be starting steroids and Remicade in the next few days, and if I don't respond well my Consultant says I need an ileostomy Just wondering what peoples experiences here are with Remicade, if it actually has a chance of working or is it some last ditch effort before an ileostomy which is the impression I'm getting from the team.
Thanks for reading

LucyBliss

deano, you poor divil! You're certainly going through the wringer there. Fistulas were my first symptom when I was your age and they were no joke. I was on Remicade back in 2005 and it certainly alleviated my symptoms to the point where I stopped being a house bound recluse and was able to go out. I remember I went to the cinema nearly every week that summer, it was such a treat to be able to sit through an entire film without having to worry about running to the toilet every few minutes.

How long it lasts depends on each individual person and how the disease has progressed so far. It is on the top tier of crohn's treatment in the sense that there are other drugs they prefer to use first to bring about remission and to maintain it. But it does work and is well worth trying.

(Also, can I just say an illeostomy isn't the worst thing in the world. I would never tell someone how to feel about something like that because it is a big decision to have to come to terms with, but since I got mine in 2008, I've never felt better. But hopefully, the remicade will do the trick for you for a long time).

Keep us posted on how you're getting on!

Paarthurnax

In relation to Remicade/ Infliximab I too completed a course of the infusions in 2006 and it worked really well no medication whstsoever at present - a few minor flare ups but no hospitalisations since. I had no real side effects from the drug which was an added bonus.

annacanna

im casually seeing a guy with crohn's.
does crohn's affect a person sex drive or does it affect them sexually? i dont want to put any pressure on this guy and i think he would be embarrased and feel less manly if i asked him

sorry if this question is insensitive

Paarthurnax

annacanna wrote: »

im casually seeing a guy with crohn's.
does crohn's affect a person sex drive or does it affect them sexually? i dont want to put any pressure on this guy and i think he would be embarrased and feel less manly if i asked him

sorry if this question is insensitive

No to be frank! But it does depend on the individual and how the are coping with the illness. In what way do you mean to put pressure an this guy as a matter of interest.

The_Conductor

annacanna wrote: »

im casually seeing a guy with crohn's.
does crohn's affect a person sex drive or does it affect them sexually? i dont want to put any pressure on this guy and i think he would be embarrased and feel less manly if i asked him

sorry if this question is insensitive

No- Crohn's doesn't affect guys sexually (aside from the fact that most of us are wandering around totally exhausted most of the time- so if he says he's too tired- he probably is.......)
Some autoimmune diseases can affect guys (in particular) sexually- such as diabetes for example- however Crohn's, thankfully, isn't one of them.

If you're considering having a sexual relationship with the guy- or indeed any relationship- communication is key- talk to him- some things work for some people sexually (or indeed in general) but not for others. Communication is key. As for the guy being too embarrassed to talk to you- most people with Crohn's stopped being embarrassed about everything a long time ago- if you were embarrassed every time you had to make an urgent toilet dash- we'd all turn into hermits.......

CathyMoran

annacanna wrote: »

im casually seeing a guy with crohn's.
does crohn's affect a person sex drive or does it affect them sexually? i dont want to put any pressure on this guy and i think he would be embarrased and feel less manly if i asked him

sorry if this question is insensitive

I have two children with my husband who has it so no it is not an issue!

annacanna

Paarthurnax wrote: »

No to be frank! But it does depend on the individual and how the are coping with the illness. In what way do you mean to put pressure an this guy as a matter of interest.

i wasnt sure if it lowered sex drive, make him very tired etc.

i dont really know anything about crohn's so im leaving it to him to bring the subject up

thanks everyone

Ladjacket

just wondering if anyone here has experience of emigrating having crohns disease? getting the travel bug, thinking on going over to my brother and his family in australia, but obviously need to figure out if this is even possible with crohns, i know i would need to speak to my consultant but does anyone here have any experience of this?

The_Conductor

Ladjacket wrote: »

just wondering if anyone here has experience of emigrating having crohns disease? getting the travel bug, thinking on going over to my brother and his family in australia, but obviously need to figure out if this is even possible with crohns, i know i would need to speak to my consultant but does anyone here have any experience of this?

I've studied and worked abroad.
I did end up in A&E in Brussels and was very sick for a while in Denmark.
Both are in the EU- and with an E1-11 you're covered. Outside the EU I imagine you'd need a Blue-Shield compatible card, to prove your insurer will pay for treatment etc.

If you were going somewhere longterm- you would be well advised to check out getting a referral to a good local gastroenterologist, alongside ensuring your insurance was good for where-ever you were going (or organising a local equivalent).

Long flights etc are fine with Crohn's- curiously we seem to be more prone to DVTs- so normal precautions there- flight socks, get up for walks etc- and make sure you have a aisle seat reasonably near the bathroom.......

beetlefan

Ladjacket wrote: »

just wondering if anyone here has experience of emigrating having crohns disease? getting the travel bug, thinking on going over to my brother and his family in australia, but obviously need to figure out if this is even possible with crohns, i know i would need to speak to my consultant but does anyone here have any experience of this?

No experience of emigrating , but my advice is to double check the insurance as they do not want to cover us, travel insurance will run a mile from crohns.
I have been to america a few times and always hopeing that i would not need any medical help

sbrk

Sincere apologies if I am posting in the wrong place?

~I have crohn's disease and I'm looking for help in finding a new GI in the waterford/cork region. Does anyone have any reccommendations I have previously seen a GI in the mercy hospital in Cork but did not find him any good.

Any advice or reccommendations would be greatly appreciated thanks!:)

Janedoe10

sbrk wrote: »

Sincere apologies if I am posting in the wrong place?

~I have crohn's disease and I'm looking for help in finding a new GI in the waterford/cork region. Does anyone have any reccommendations I have previously seen a GI in the mercy hospital in Cork but did not find him any good.

Any advice or reccommendations would be greatly appreciated thanks!:)

I go to prof shanahan in CUH , I think he is good no complaints . He does not mind u asking questions which I like .
Some of surgeons think and diagnose without asking how the sufferer feels .

The_Conductor

Janedoe10 wrote: »

Some of surgeons think and diagnose without asking how the sufferer feels .

As a generalisation- unfortunately this is very true. Many of the surgeons aren't 'people-people', the consultants with specialities other than surgery tend to be a lot more approachable and willing to sit down and discuss than others. I've memories of getting increasingly irate as a surgeon sat me down in a chair in front of him, and proceeded to read for 20 minutes, without ever talking to me- and then called his secretary and ordered tests for me, without ever having had spoken to me.

The_Conductor

Hospitalised again, since last Wednesday. A work colleague brought me straight in- same story as last April, more adhesions, and probable strictures. NG tube accidentally removed yesterday, while attempting to wash my hair, fairly spectacular nose bleed, thanks to the warfarin. Sipping fluid now- so the IV line isn't constant.

They gave me a bowel chart to fill out yesterday evening- I can't really put 'not applicable' in most of the fields and then say I've been to the toilet over 40 times?

I'm just so tired, and fed up, and sore, and hate sitting around wondering when I can get the next pain killers, so I'll be semi-functional for another few hours......

Sometimes you read about all these wonderful medical discoveries- full bowel transplants etc- and wonder- would your life be different if some miracle happened and you became a candidate for something like that? What about all the other adjutant conditions? Sarcoidosis, osteopenia, etc etc etc. Will have a miracle cure for any of these?

Been sitting at the window in here- for over 2 hours, wondering just when its going to get bright- watching the clouds flitting on the horizon- stormy weather today I guess.

Hope my little wifey and kids are ok, they're my life.

Northern Monkey

I hope things improve for you soon

bluebell1

Things will get better. You will come out the other side...... Get well soon.