Crohn's Disease

Gremlinertia

Ok, on first point fcuk, hope that can be contained or controlled

Second point, Terry Pratchet Is one of the funniest ever beings, good giggles thank you.

Tony H

Just another update , feeling a lot better ,started on solids yesterday , all tubes bar the central line out and in general just feeling better emotionally as well as physically .

The_Conductor

Tony H wrote: »

Just another update , feeling a lot better ,started on solids yesterday , all tubes bar the central line out and in general just feeling better emotionally as well as physically .

Great to hear it- sounds like you're really on the road to a new you that you'd scarcely have imagined such a short time ago! I hope you continue to make progress as you're doing- its nice to hear happy stories such as yours.

Tony H

The_Conductor wrote: »

Great to hear it- sounds like you're really on the road to a new you that you'd scarcely have imagined such a short time ago! I hope you continue to make progress as you're doing- its nice to hear happy stories such as yours.

Thanks for that , how are you doing yourself ? Any improvement.

Tony H

just another good update , stoma working really well , was told by by the my surgeon that everything continuing the way it has so far I could be discharged by Monday-Tuesday , feeling on top of the world , how things can change in 48 hours ,

OUTDOORLASS

:)Hi Tony, did they show u the door yet. Mind yourself when you go home....
X.

Tony H

OUTDOORLASS wrote: »

:)Hi Tony, did they show u the door yet. Mind yourself when you go home....
X.

Thanks OUTDOORLASS
Just arrived back from Dublin about an hour ago , resting in my own bed and loving it , had a nice walk around the garden and got reacquainted with my big ol golden retriever Joey , so all is good ,

I think the only mistake I made was using the painkillers sparingly , because I was given a really quizzical look when I asked for them to be included on my prescription leaving the hospital ,
They really like insisting that paracetamol is quite as good as oxynorm but is really is not , I''m 56 and it felt anytime I was looking for pain relieve I was treated like someone with a problem or a child ,
another rant over

livedadream

Hope everyone's doing okay? I'm still on the liquid diet and was flying it for a while. It picked up a stomach bug from my brother this week so now I think I might be about ready to kill someone, being sick and having the usual symptoms (the really attractive ones you can gather) when you haven't eaten is actually a million times worse than them there sometime to come out so to speak. Thank god it's the weekend....

patnor1011

Even lowest strength oxynorm works better than strongest paracetamol. My GP do not want to prescribe them for me only after surgeries as they are addictive. Paracetamol kinda stopped working for me long time ago. I do use codeine painkiller when I need it.

Tony H

patnor1011 wrote: »

Even lowest strength oxynorm works better than strongest paracetamol. My GP do not want to prescribe them for me only after surgeries as they are addictive. Paracetamol kinda stopped working for me long time ago. I do use codeine painkiller when I need it.

doing really well at the moment , funnily enough I have the oxynorm for the last week and have not taken one , I have some discomfort at times but touch wood I have no pain whatsoever ,
lost a few pounds since I came home , so I'm hoping I will start gaining it back soon , weighing my self tomorrow so here's hoping

Tony H

livedadream wrote: »

Hope everyone's doing okay? I'm still on the liquid diet and was flying it for a while. It picked up a stomach bug from my brother this week so now I think I might be about ready to kill someone, being sick and having the usual symptoms (the really attractive ones you can gather) when you haven't eaten is actually a million times worse than them there sometime to come out so to speak. Thank god it's the weekend....

I feel your pain , hopefully the bug will clear up and you can progress again .

livedadream

You too tony, glad to hear your doing better!

The_Conductor

Its nice to hear of progress- and mostly the lack of pain for you Tony- Its quite remarkable the relief that surgery can bring- and indeed, how fast it can be- though of course, as you've discovered, its not without its ups and downs.

I know what you mean Patnor1011 - about GPs being reluctant to prescribe pain relief. I was, until recently, on 600mg ibuprofen and difene 3 times a day- I've developed the 'Crohn's Arthritis' that seems to be a regular side-effect for us. As my liver function tests were going screwy- the GP decided to withdraw my script for this- and instead give me a script for a tube of difene gel a month....... I used the first tube in under a day- and ended up in tears on the phone to the GP- only to be told he'd fax a repeat as necessary script to the pharmacy for difene gel- which I've been using liberally.......... Of course it doesn't do anything whatsoever for abdominal pain- and now that I'm not on systemic painkillers, I'm in constant pain (though at least I'm able to get up and down the stairs again thanks to the difene gel- though my knees are quite unusually inflamed- along with some of my fingers. My poor little 5 year old doesn't understand that its so painful for me to carry her- I feel so sad- but I try anyway.

I don't know what I'm going to do re: surgery in my case. The stoma will be so high up- that perinatal feeding (by IV) of both food and fluid several times a day will be necessary- until such time as it can be reversed (if this is indeed feasible). The GI consultant- who had been suggesting the surgery was necessary and while not urgent, couldn't be put on the long finger, is, after talking to surgeon, trying to help me cope on a day to day basis- liquid diet as necessary and low residue at all other times. I don't mind the diet- or lack thereof- so much- its annoying at times, and constantly bland- but hey, aside from the not infrequent blockages, it tends to work. I've stemetil injections which the GP is reluctantly allowing me administer to myself when I need them- and a few other painkillers (the consultant took pity on me and gave me a script for both tramadol and solpadol)- but I've tried to ration taking them because I don't know whether, or not, I'll get new scripts if I ask for them......... I have a few boxes of 600Mg Ibuprofen squirreled away for the worse days too- though I can't take them like smarties anymore (aside from anything else- they tend to exacerbate the internal bleeding- and I'm also on warfarin- blood clots being another common side effect of Crohn's that no-one thought to mention all those years ago).

I need a new body- I really do- I guess I'm lucky I've gotten this far- I never thought I'd live to be 30 never mind 40- and I've two wonderful little monkeys who bring a smile to my face even thinking of them.

I console myself sometimes- thinking of reincarnation, and what creature I'd like to come back as- something wild and free- that lives a happy carefree life, and preferably hibernates for the winter- sounds good to me.........

patnor1011

And here I was yesterday going on pretty much fine apart from knowing for about two years already that my illeostomy is going to stay for life. I am not complaining, quality of my life hugely improved since I got it compared to what it was before. There was slight tiny hope that maybe one day somehow I will get it reversed....
Well until yesterday when my consultant suggested chat with surgeon to talk about complete removal of bowel and the rest of plumbing. Well, just as a proactive thing to reduce possible bowel or rectal cancer in future. I am NOT looking forward to have that conversation. I am quite down now and cant wrap my head around that one. Sorry for my rambling so early in the morning.
On the other hand some of you do have much bigger problems so I will have to learn to live with mine.

Qreq

I read recently that Stelara/ustekinumab, a drug used already used to treat specific types of arthritis and psoriasis, has been approved by for use in the EU for moderate to severe Crohn's. Hopefully, it will be useful addition to the existing options. For suitable patients, treatment involves one intravenous (IV) dose followed later by maintenance injections.

MsGiggles

Hi All

Hope we are all doing well Or some kind of well anyways....

Just wondering if anyone has any experience of Dr Marcos in University Hospital Waterford ? I would be interested to hear of people's experience's with him...

Giggs x

livedadream

in not based up there sorry MsGiggles... I am looking for a second opinion at the moment though so might be travelling for someone good so let me know what you think...

anyone have any tips for dealing with the feeling down coz of missing out on your life?
having a serious blast of the tears the past couple of weeks, its just work, home, tv,bed for me at the moment, no food really just crackers and the liquid shakes, missing my friends, family dont really understand coz they see me going to work etc so think im fine, no running, went shopping on Saturday and fainted from lack of food and water (coz you cant eat and go shopping with crohns can you) just wondering how much longer this is going to last, facing down the barrel of christmas without any nights out or nice food and enjoying it is making me even more miserable...
any ideas guys? how to pull myself out of the funk?

MsGiggles

livedadream wrote: »

in not based up there sorry MsGiggles... I am looking for a second opinion at the moment though so might be travelling for someone good so let me know what you think...

anyone have any tips for dealing with the feeling down coz of missing out on your life?
having a serious blast of the tears the past couple of weeks, its just work, home, tv,bed for me at the moment, no food really just crackers and the liquid shakes, missing my friends, family dont really understand coz they see me going to work etc so think im fine, no running, went shopping on Saturday and fainted from lack of food and water (coz you cant eat and go shopping with crohns can you) just wondering how much longer this is going to last, facing down the barrel of christmas without any nights out or nice food and enjoying it is making me even more miserable...
any ideas guys? how to pull myself out of the funk?

So sorry you are feeling that way, but I think I can really relate....
I got diagnosed about 2 years ago, after a year and a half waiting to find out what was wrong, I can honestly say the last 3 years or so have been extremely tough. I had surgery in April which had some complications so was bigger than anticipated and had a long recovery. There were days when I would just wake up crying, or all someone would have to do would be look at my funny and I would cry. I remember one particularly bad morning, my mother had called to me to dress and pack my wounds and I just said, Mam I feel like I am never going to get better and she said how about trying this - Wake up tomorrow morning and pretend you are seeing an improvement, pretend, just for a minute that you are OK, just try and push yourself. I looked at her and said how in the world is that going to help, but surprisingly enough, it was the push that I needed - sometimes you just got to fake it till you make it (not always easy tho!)

I am just back from a trip to NYC with my sister visiting my brother and am currently going through a flare. My sister has Crohn's too so at least me and my disease had company! But I get what you are saying about how do you just not throw in the towel and to be honest I nearly did this week - I was in the most exciting city in the world and I was just looking for the nearest toilet, or something to stand against whilst the pain passed ! BUT had I given in I would never have gotten to see that wonderful city - You are always stronger than you think, and please, give yourself a break too. If you need a day that you just stay in your PJ's and relax then so be it - Its not a day wasted, its a day re-charging and listening to your body - We have to do things like that so don't feel bad in doing it - your not missing out, your doing what is needed to go and have an awesome time the next time you go out.

The most important thing for me is taking charge of the illness, get on top of it -Know your body inside out. Plague your GP or Consultant with questions when you need to and if you are having a prolonged flare (Like I am at the mo) get on the phone and start really talking up and saying this is not OK I need help...

I really hope you can get out of this funk - But give yourself a break too its OK not to be OK sometimes

The_Conductor

Sorry to hear- what is a very familiar story, livedadream.........
My wife and myself pretty much do as you do- go to work, come home exhausted, eat, tv bed- in a never ending cycle........

We're lucky- we have two little munchkins who make things more bearable- they run up and give us hugs all the time, they know what they mean to us.

We're not up to going out- but we do take a half day from work here and there- and make 'us' time- a daytime date- to go to the cinema, or whatever we can do- which very often, isn't a lot........

I've found a few sauces that I can tolerate- such as Japanese Teriyaki sauce- and aside from copious amounts of crackers- do a mean piece of chicken basted in said sauce.........

Seriously though- you can't survive on crackers- I'm on virtually a 'no residue' diet because of severe strictures and long lengths of narrowings- and I probably have a more varied diet than you do (though I honestly can't tell you when I last had a piece of fruit, a vegetable, hell- I don't remember when I last had mashed potatoes........).

Unfortunately- there isn't a magic solution that helps everything fall into place- its a game of constantly challenging yourself- if you can manage crackers- you can probably add a little chicken or fish to your diet- think of things that are basically a doddle to absorb and leave little/no residue.........

When I'm at my worst- sometimes I get stemetil injections to try and calm my stomach- and then I sip drinks that are tasty- but high in sugar and easy on my stomach- I feel bold recommending a cola- Supervalu stock Fentimans Cola though- which is based on ginger root extracts...........

You are going to have to push yourself- you don't have to take massive steps- but you do have to consciously add a little more variety to your diet- and to be honest- sugar helps- just to keep you going......... (though I really shouldn't be advocating it- sometimes you or I just need it...........)

It is tough- and its damn hard to keep going- when you're constantly running on empty- and if you are running on empty- taking some time out- and simply lying down and conserving energy- in a position to take the pressure off your stomach and intestine- can make a difference.

Hugs.

The_Conductor

MsGiggles wrote: »

Hi All

Hope we are all doing well Or some kind of well anyways....

Just wondering if anyone has any experience of Dr Marcos in University Hospital Waterford ? I would be interested to hear of people's experience's with him...

Giggs x

Sorry MsGiggles- not from your neck of the woods- I'm not familiar with Dr. Marcos.

MsGiggles

The_Conductor wrote: »

Sorry to hear- what is a very familiar story, livedadream.........
My wife and myself pretty much do as you do- go to work, come home exhausted, eat, tv bed- in a never ending cycle........

We're lucky- we have two little munchkins who make things more bearable- they run up and give us hugs all the time, they know what they mean to us.

We're not up to going out- but we do take a half day from work here and there- and make 'us' time- a daytime date- to go to the cinema, or whatever we can do- which very often, isn't a lot........

I've found a few sauces that I can tolerate- such as Japanese Teriyaki sauce- and aside from copious amounts of crackers- do a mean piece of chicken basted in said sauce.........

Seriously though- you can't survive on crackers- I'm on virtually a 'no residue' diet because of severe strictures and long lengths of narrowings- and I probably have a more varied diet than you do (though I honestly can't tell you when I last had a piece of fruit, a vegetable, hell- I don't remember when I last had mashed potatoes........).

Unfortunately- there isn't a magic solution that helps everything fall into place- its a game of constantly challenging yourself- if you can manage crackers- you can probably add a little chicken or fish to your diet- think of things that are basically a doddle to absorb and leave little/no residue.........

When I'm at my worst- sometimes I get stemetil injections to try and calm my stomach- and then I sip drinks that are tasty- but high in sugar and easy on my stomach- I feel bold recommending a cola- Supervalu stock Fentimans Cola though- which is based on ginger root extracts...........

You are going to have to push yourself- you don't have to take massive steps- but you do have to consciously add a little more variety to your diet- and to be honest- sugar helps- just to keep you going......... (though I really shouldn't be advocating it- sometimes you or I just need it...........)

It is tough- and its damn hard to keep going- when you're constantly running on empty- and if you are running on empty- taking some time out- and simply lying down and conserving energy- in a position to take the pressure off your stomach and intestine- can make a difference.

Hugs.

What great advice you always give Conductor. Glad to have a medium like this to meet strong warriors like yourself. You've sure helped me out of a jam or two. Just wanted to show my gratitude. :-)

The_Conductor

MsGiggles wrote: »

What great advice you always give Conductor. Glad to have a medium like this to meet strong warriors like yourself. You've sure helped me out of a jam or two. Just wanted to show my gratitude. :-)

Thankyou.

Just having a giggle here- my manager just caught me sipping one of the aforementioned Fentimans cola- its in a glass bottle- and thinks I'm drinking alcohol....... Lol....... Try a bottle sometime- if you're not near a bigger Supervalu- Amazon sell 12 bottle trays- with free delivery to Ireland.

patnor1011

Diet and everything is something I am completely lost. I mean six years on and I am still clueless. Nothing works in my case so I cant really be of any help in this matter I mean this thing is so variable it is nearly impossible to figure it out. Well at least I could not get to figure it out no matter what I do.

I can only say that after illeostomy my life improved significantly. If you have to run to a toilet 2-3 times every hour you know what I mean. As for the diet I may be one of the lucky one's. I gave up trying to figure out what is good or bad for me. It simply changes and quite often so I decided just to go for it. If I get pain I simply do not eat it again for a while. Like for example oranges. At a times even smell of them caused me pain. Then I had some red blood oranges I could not resist as they reminded me my childhood and found out nothing is happening. I was eating couple of them every day along with normal regular oranges. Few weeks went on and then one day I had one again only to be hit with pain again.
The same happened with so much of food stuff I simply lost track and for the last few years I simply eat everything. If something does not agree with my stomach I usually find out soon enough and try to avoid it for some time.
I try to avoid sugar and white bread but that is just to not to get too fat. Yeah, I am not joking... 6 years ago I was barely 50 kilograms now I do have nearly double of that.

My Crohns does not really represent itself as too much of a pain and I am having no problem with eating pretty much everything (there is always something I am trying to avoid at any given time anyway). It is rather bit of a pain but always accompanied with extreme weakness and fatigue, tiredness. I feel like literally I am losing will to live. It can last one or few days but after that back to normal life in a sense.

If I will have to chose between this and what I experienced before surgery I have to say that bag wins every time. Life with illeostomy is a challenge in a sense but much more bearable than spending most of my day sitting in or running to a toilet.

livedadream

guys, thank you so much for all your words of support and advise, I actually ended up going to my GP yesterday after work and having a rant, he said it to me straight, that yes this is a horrible illness that i cant get rid of and can beat you down, he said i'm malnourished (i lost about 7 1/2 stone on purpose over the past year and a half, well almost two at this stage now..) thinking the food was causing my problems, i suppose i was frustrated because i thought it would make me better...
he said theres a thing called starvation diarrhea and that its not actually a crohns flare i've been going though for the past 2-3 week, (i would need a scope to confirm 100% but he's pretty sure) since i started the liquid diet ive been so down and miserable i thought it was because i wasnt getting better turns out im just too afraid of food and missing carbs and life in general...
he said its very common in people with an IBD and the like, that you learn what foods to avoid but in the end you cant avoid all food and cut out so much that your left miserable, 
he referred me to someone to talk to, reassured me that im not crazy and that its not all in my head and gave me a strong talking to about not eating, he would rather me chubby and healthy than thin and miserable apparently (who knew after years of getting bollockings for being on deaths door form being too fat. ) 
the tips your guys gave me have made me feel so much better, not just because i realise im not alone but Msgiggles tell your mom her advise works, i got up this morning and just told myself its going to be okay, im going to push on, (i dont have any other option but ya know...) 
i did have a good chat with my mom last night and told her that i hate it when people are saying how healthy i look and how much weight ive lost etc etc, and how i feel like people think im making it up or how i feel some people dont realise that sometimes i have nothing left to give, that the day at work just exhausts me. she was really good she said that while my family know and can see on a daily basis how much of a struggle it is that others dont, they just see Liv, powering though with life and assume im okay.
Again, sorry for the long spiel but thank you, every one of you for your words, tonight, chicken for dinner :ermm:.

ChartAccount

For those who missed it:


http://www.independent.ie/irish-news/politics/medicinal-cannabis-could-be-legal-by-the-spring-35261636.html

The_Conductor

ChartAccount wrote: »

For those who missed it:


http://www.independent.ie/irish-news/politics/medicinal-cannabis-could-be-legal-by-the-spring-35261636.html

RTE had a good interview with Simon Harris on 'The News at One' earlier last week, on medicinal cannabis.

In short- he is looking favourably on the introduction of medicinal cannabis- however, there was a vote in the Dáil on its introduction last week. He is parking the private member's bill- until such time as a working group reports back on the medicinal use of cannabis (probably in late January)- and is then anticipating reintroducing the bill.

As has been mentioned in passing on this thread previously- Minister Harris suffers from Crohn's Disease himself- so particularly from an IBD perspective, we may have a kindred spirit in him.

Now all we have to do- is get Crohn's added onto the LTI scheme- and it'll remove a monthly stress from all our lives- most of us who aren't lucky enough to have a medical card- have skipped medication from time to time- because the 144 a month was a just a bridge too far to afford. Its also why even those with long term illnesses without medical cards are 14 less likely to visit their GP or consultant- than are those with medical cards. There is almost a perverse disincentive for those with LTIs to do their utmost to work......... Even restoring the tax deduction to a person's marginal rate- would make a big difference.

Anyhow- enough bitching from me- I guess a lot of the trouble with people with Crohn's, myself included, is we are so exhausted and demotivated so much of the time- that we never get our act together and speak up for ourselves- in the manner that so many other groups manage- and as always- its the squeaky wheel that gets greased- and we're simply not squeaky- we're curled up in pain hiding a lot of the time- and when we're not- we have lots of people telling us how wonderful we look- despite the fact that we might be in bits...........

We really need to our acts together guys...........

livedadream

How's everyone getting on in the lead up to the biggest binge eating holiday of the year? 🀣

The_Conductor

livedadream wrote: »

How's everyone getting on in the lead up to the biggest binge eating holiday of the year? 🀣

Stocked up on 2 crates (48 bottles) of Evian mineral water- and am going to do my damndest to try and drink as much fluid as possible. It may be the season of excess for most people- not for us though- just managing to get by- its as good as it gets for a lot of people with Crohns. If I can get through the holiday without an obstruction- it'll have been a good holiday.

livedadream

Here's to 2016 the winter of no obstructions. I'm not great wth the water, my new thing is Netflix and dioralyte instead of Netflix and chill 😀 so trying to stay hydrated....
I want a bag of chips and a full day can of coke more than anything now though! I've had three big nights out and the not eating and buckets of water if getting boring...

The_Conductor

livedadream wrote: »

Here's to 2016 the winter of no obstructions. I'm not great wth the water, my new thing is Netflix and dioralyte instead of Netflix and chill 😀 so trying to stay hydrated....
I want a bag of chips and a full day can of coke more than anything now though! I've had three big nights out and the not eating and buckets of water if getting boring...

You could always try ginger ale- or something based on ginger- I find I tolerate it very well. I'm quite happy drinking Evian or Ballygowan though- but not other mineral water- as regardless of what people say- they do taste............

Think I mentioned Fentimans cola here before- its made from fermented ginger root- and while it is pricey- its nice as a treat.

It really is a case that you simply have to try and keep a low profile, try to keep your tummy as quiet as possible- and learn how to say 'no' to people- you are not up to going out every night- just because its Christmas- they may be fine the next morning- whereas you'll spend the day on the toilet possibly loosing interesting amounts of blood.

The biggest and hardest thing to do at this time of the year- is to say 'no' to people- they don't understand- and frankly, there is no point in trying to educate them- just say no............