# I am finally saying hello!



## PenguinVic

Hi all.

Just thought I would introduce myself. I was diagnosed in October 2012, and it has been a bumpy ride ever since. I have plucked up the courage to join the forum today, although I chanced upon the it in the early days. 

I want to thank you all for your openness about your Crohn's/UC journeys. This forum has been an incredible source of support to me during some dark days, and I have spent many hours reading about other people's experiences. Your struggles have put my own into perspective, when I have read about the surgeries, the pain, the difficulties trying to maintain a normal life. Even though it has taken me a long time to join and say hi, I feel like I have this worldwide community that has supported me through a difficult year or so.

My Crohn's is widespread - I have it in the oesophagus and stomach, as well as multiple locations in my intestines - but it is not severe in any one location. I also have extra-intestinal complications (iritis and arthralgia) and have been through the 'exciting' experiences of drug-induced hepatitis from Imuran, as well as wasting months going nowhere on methotrexate.

On a brighter note, I now have curly hair thanks to methotrexate!! A lot of it fell out while I was on the drug and it has grown back curly. People would pay hundreds of dollars to get the sort of curls I now sport.... ;-) :-D

I am reasonably well most days now. And being confronted with a chronic disease has made me re-think a lot about my life. In the past year, I have achieved one of my major life goals and I back doing the development work I love in Southeast Asia. I turned more than a few specialists' heads when I said I wanted to travel regularly to this region.... Having said this, I am sitting today in Yangon feeling sick as a dog and wondering if I am flaring again..... ^sigh^.... That's what drove me back to the forum. Despite being exceedingly careful with food, I have raging diarrhoea, a sore gut, nausea, 'Crohn's brain' and fatigue.  Hopefully, I have just picked up a local bug and have gastro.... I will be back in Australia in a few days, so I am going to ride this out and see my GI in Melbourne if it worsens.

Anyhow, hello everyone. I am grateful to be part of this forum and I look forward to swapping stories and advice with you all as we journey through this horrid disease.

Cheers!

Vicki


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## mdd

welcome!


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## Absentminded

Hi, Welcome to the forum!


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## scottsma

Hi,glad you called in and hope you stay.Best Wishes for your future.


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## Carrie171087

Hi and welcome. I am new to this forum to and your right its been a big help. Just a question what do you mean by 'Crohns Brain'?


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## PenguinVic

Hi Carrie.

'Crohn's brain' is a term my family has coined for me.... I read somewhere that being in a Crohn's flare can affect cognitive functioning to the same degree as a 0.05% blood alcohol content.

When I was really sick, I found that some days I just couldn't think clearly, and my reaction times were slow. I actually had to stop driving for a while, as I could tell I wasn't safe (slow reactions). Also, I am a researcher by profession, but I couldn't even read half a page of a light novel. And even though I am pretty well now, some days if I am fatigued I find my brain just doesn't process things clearly.

So we coined 'Crohn's brain' to give this a label, rather than everyone getting frustrated with me.

Cheers!

Vicki


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## Josephine

PenguinVic said:


> Hi Carrie.
> 
> 'Crohn's brain' is a term my family has coined for me.... I read somewhere that being in a Crohn's flare can affect cognitive functioning to the same degree as a 0.05% blood alcohol content.
> 
> When I was really sick, I found that some days I just couldn't think clearly, and my reaction times were slow. I actually had to stop driving for a while, as I could tell I wasn't safe (slow reactions). Also, I am a researcher by profession, but I couldn't even read half a page of a light novel. And even though I am pretty well now, some days if I am fatigued I find my brain just doesn't process things clearly.
> 
> So we coined 'Crohn's brain' to give this a label, rather than everyone getting frustrated with me.
> 
> Cheers!
> 
> Vicki


 I have crohns brain quite a lot recently.


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## dave13

welcome vicki,"crohn's brain' is a good description.Interesting comparison to the alcohol content.It is very much a foggy and muddled feeling I can relate to.:smile:


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## mnsun

Hello.  Just wanted to suggest a couple things for crohn's brain.  I take Bacopa or vinpocetine, once a day in the latter afternoon.  I sometimes give Rhodiola Rosea a try for the same purpose, but its effect is less obvious.  These help me read at night.  Online megastores often have them cheap enough, with little excipients/fillers.


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## rollinstone

hello from queensland, austraia!


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## Carrie171087

PenguinVic said:


> Hi Carrie.
> 
> 'Crohn's brain' is a term my family has coined for me.... I read somewhere that being in a Crohn's flare can affect cognitive functioning to the same degree as a 0.05% blood alcohol content.
> 
> When I was really sick, I found that some days I just couldn't think clearly, and my reaction times were slow. I actually had to stop driving for a while, as I could tell I wasn't safe (slow reactions). Also, I am a researcher by profession, but I couldn't even read half a page of a light novel. And even though I am pretty well now, some days if I am fatigued I find my brain just doesn't process things clearly.
> 
> So we coined 'Crohn's brain' to give this a label, rather than everyone getting frustrated with me.
> 
> Cheers!
> 
> Vicki


WOW this is exactly how I've been feeling since my operation and other days in fact.I also struggle concentrating and find it hard to read even reading your reply was proving difficult. I'm glad I'm not alone and think i to from now on use the term I have Crohns Brain today! haha.


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## PenguinVic

Enjoy the term, Carrie. It covers a multitude of ills.... (there's gotta be something good come out of this??!!)

Thanks MNSUN for your suggestion. Will check it out. I find a good coffee works wonders in the morning too (when I'm not flaring and can actually get it down).

And g'day to Joshua in QLD. Which part of the state are you in? We were up in Townsville recently for our daughter's graduation from JCU. A lovely part of the world (except in cyclone season...). Much nicer weather than Melbourne.

Cheers!


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## dave13

I am fortunate to be able to handle coffee most mornings.It does help to chase the cobwebs away.I feel like I'm giving crohn's the finger every time I have a cup(and not run to the toilet). Maybe I just feel coffee helps and I'm just more alertly confused?:ylol:


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## mnsun

Of the three, Bacopa is the most helpful.  It might be good to skip a day per week, as it can have a mild slightly cerebrally tiring effect if taken weeks on end--maybe it's just me, though.  But I only take one 250mg cap per day as a dose.


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## PenguinVic

Thanks mnsun. I will check it out in the next few days.

Dave, I love your attitude :ylol: I think the only way to deal with this disease and have any sort of quality of life is to 'give it the finger' in as many ways as possible. I love my morning coffee and I'm determined to have it, even if I have to run to the toilet afterwards!!!


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## ronroush7

Welcome to the forum.  You said that you have Crohn's Disease in the esophageus.  What do they do to treat it?

 2


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## PenguinVic

Hi ronroush.

Initially, my specialist treated the oesophagus the same way he treated the rest - with steroids (Prednisolone). But after a couple of weeks he also put me on Nexium to treat the stomach and oesophagus, and told me to take Gaviscon/Mylanta (an antacid) whenever I felt my throat was burning, particularly after eating. Other than that, I just have to avoid any foods/beverages that make my throat burn.

15 months after diagnosis, I am still on Nexium, as well as the Humira and Mezavant that is (hopefully) keeping things at bay overall.


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## ronroush7

My doctor put me on Prevacid.

 2


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## PenguinVic

I had a look at Prevacid, and it looks like it is in the same class of drugs as Nexium - a proton pump inhibitor.


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## ronroush7

Welcome to the forum and I hope you feel better soon.

 2


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## steph_irish

Hi Vicki
Welcome to the forum, I'm new also. I forget what coffee tastes like. I've tried a sneaky cup to no avail, just not worth the pain. So unlike yourself and Dave there's no chance I'll be sticking my fingers up to crohn's anytime soon.


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## dave13

It may not be coffee Steph,but you can be defiant to crohn's in your own way.Heck,I feel a moral victory when I drive to work and not worry about finding a bathroom!


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## JasonatFollowMeg

PenguinVic said:


> Hi Carrie.
> 
> 'Crohn's brain' is a term my family has coined for me.... I read somewhere that being in a Crohn's flare can affect cognitive functioning to the same degree as a 0.05% blood alcohol content.
> 
> When I was really sick, I found that some days I just couldn't think clearly, and my reaction times were slow. I actually had to stop driving for a while, as I could tell I wasn't safe (slow reactions). Also, I am a researcher by profession, but I couldn't even read half a page of a light novel. And even though I am pretty well now, some days if I am fatigued I find my brain just doesn't process things clearly.
> 
> So we coined 'Crohn's brain' to give this a label, rather than everyone getting frustrated with me.
> 
> Cheers!
> 
> Vicki



Wow, thanks for sharing this! My wife has Crohn's and I feel like I'm pretty sympathetic to her pains, yet I've never considered how it affects her cognitive functions.  I'll try to be more aware and alert to her needs.


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## dave13

JasonatFollowMeg said:


> Wow, thanks for sharing this! My wife has Crohn's and I feel like I'm pretty sympathetic to her pains, yet I've never considered how it affects her cognitive functions.  I'll try to be more aware and alert to her needs.


Personally,It's frustrating because you  know your brain isn't firing on all cylinders,but nothing you can really do about it.It's great your so supportive!
I'm new to crohn's and my wife has been great through my surgeries and my general sense of being overwhelmed about going forward living with crohn's.Support is important to healing.


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## steph_irish

dave13 said:


> It may not be coffee Steph,but you can be defiant to crohn's in your own way.Heck,I feel a moral victory when I drive to work and not worry about finding a bathroom!


:ylol: 'guess your right' in my mind I stick my fingers up to it if I manage to walk the dog. I also stick my fingers up to it when I'm having a sleepless night on the loo and say 'F---ing Disease'


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## dave13

steph_irish said:


> :ylol: 'guess your right' in my mind I stick my fingers up to it if I manage to walk the dog. I also stick my fingers up to it when I'm having a sleepless night on the loo and say 'F---ing Disease'


Never give up,never surrender!


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## steph_irish

dave13 said:


> Never give up,never surrender!


lol :ghug: NEVER!!!!!!!!!


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## PenguinVic

Hi everyone.

Glad my comments about Crohn's brain seem to have struck a chord.... It is frustrating to feel like you're not firing on all cylinders.

Jason, I can't tell you how important your support role is in keeping your wife going. I think I would have crumbled without my husband at times... But do try to get some support or some sort of healthy release for yourself (a new hobby, some form of exercise, etc), so you don't go under with the added stresses.

Dave and Steph, I agree with all of what you have said - walking the dog without an 'incident' and getting home without collapsing from fatigue, getting to work without a pit stop, just getting through a normal day is telling Crohn's where to get off. At one stage, even just getting out of bed and having a shower was a victory for me. 

Thought you might like to read the following true story from CNN. I really love the way she starts her day: "'Today I will fight again. This disease will not own me or define me.' These are the words I like to begin each day with, stating my intent out loud. Somehow it seems if I actually hear it, it's easier to live it and believe it."

I was really inspired by her attitude and have adopted this as my daily mantra.

Here is the link to the story: http://edition.cnn.com/2012/08/07/health/crohns-personal-struggle/

Hope you like it.

Cheers!

Vic


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## dave13

wow! That was powerful.I put the link on facebook.I have a lot of friends who no nothing about crohn's and other IBD's,open some eyes maybe.


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## pink&green

Hello and Welcome.


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## PenguinVic

Hi pink&green. And welcome to you too! You look like you have just joined? Hope your health is going ok at present?

Thanks for spreading the word, Dave. This really is a powerful story. I sent it to a friend who has a severe spinal issue which causes horrific daily pain. Even for her (with a different medical condition), it was inspiring.

Perhaps I should put up a more general post with the link to this article??


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## dave13

I think it is worth sharing.It's a well told story that might help those who know nothing about crohn's better understand.In my humble opinion.


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## PenguinVic

I am a bit technologicall challenged and can't figure out how to start a new thread....


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## dave13

just click on one of the catagories  in the 'new posts' page;'general IBD discussion' for example.At the top is a 'start new thread' option,click on that.I think that should work


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## fozheart

Hi PenguinVic!  

Welcome to the forum!  What an inspiration you are- not letting your disease get in the way of achieving your goals! Congratulations on your work in SouthEast Asia! I hope your doctors can find the right medicine for you, without the ugly side effects!


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## steph_irish

Wow just read that 2, pretty powerful stuff. 
I also read the link Dr. Rubin has on there about advancements in treating Crohns, within next 2 years.

There might be hope for us yet! :ghug:

http://edition.cnn.com/2012/08/14/health/doctors-crohns-treatment/index.html


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## PenguinVic

Debbi's story is truly inspiring. Glad you liked it, Steph. Like I said, I still say that mantra most mornings when I get up. I recently attended a seminar on Crohn's, given by a couple of gastroenterologists. It is really exciting the number of new treatments (at least 6) that are in the final stages of testing. Fingers crossed they get through!!!

Thanks for your welcome, fozheart. I don't think I'm all that inspiring. Like everyone else on this forum, I have battled days where I have had a deep sense of hopelessness and anxiety about my future prospects. But fortunately I have a supportive husband and kids, and I also have quite a few friends with even more serious or painful conditions than me. I guess they put my life in perspective, and being diagnosed with CD made me realise just how fragile and short life is. It kind of gave me the push I needed to get going on my life goals. Like Dave, my attitude is to tell CD where to get off and try to get on with my life as much as I can (around flat days and horrid symptoms at times).

"I will not let this disease own me or define me." Debbi Wynn


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## dave13

Hi Vicki,not one person checked out the link on my facebook page.I didn't think it would get a lot of hits,but I thought it would get a few.To be honest,it made me kinda sad there was no interest.If someone posts a pic of there latest dessert it gets 50 likes.It put me in a funk for sure.Oh well,pity party over...on with life.


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## PenguinVic

Oh that's a bummer Dave. Maybe someone will look at it and be touched by it when you least expect it. And yeah we live to fight again another day!!! We will not let CD own us or define us!


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## PenguinVic

I've just uploaded a photo - hopefully you can see it. I thought it was particularly salient to people with CD....


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## dave13

all I can say is...wow:eek2:


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## steph_irish

OMG that cheered up my morning. That image gonna stay with me for life, LOL big-time.
:ylol:     :stinks:


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## dave13

It makes me think it should be a character in a Dr.Who episode.


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## steph_irish

dave13 said:


> It makes me think it should be a character in a Dr.Who episode.


Ha ha you are so right!!!!
What could we call it????????????
SIR FART ALOT, with the motto---- NEVER TRUST A FART! :ylol:


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## PenguinVic

Or perhaps they could be the Fartisians from the planet Fartismus - a gasesous giant in the Methanous nebula.....  :hallo3:


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## steph_irish

Ha ha ha ha,  laughing so much right now....Love it :ylol:
Yes I'm very easily amused.
I used to get into so much trouble at school. :emot-dance:

Just had another look...HOW THE HECK DID THEY GET THAT SUIT ON?????


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## dave13

The rubber suit creature might be an ally of the weeping angels.It stuns you with a blast of gas and the angels get you when you try not to blink from watery eyes. :yfaint:


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## steph_irish

dave13 said:


> The rubber suit creature might be an ally of the weeping angels.It stuns you with a blast of gas and the angels get you when you try not to blink from watery eyes. :yfaint:


:ylol: the lunacy of it all  ha ha ha ha :ylol:


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## PenguinVic

Hahahaha...:lol2: Farts are so much fun (provided they're not wet!!) oo:

Dave I like your theory about the rubber suit monsters working in tandem with the weeping angels. I can feel a Dr Who episode coming on....


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## steph_irish

They're funny alright, just can't trust em sometimes  
Worked out in the gym for the first time in ages today, was doing an ab crunch and tooted at the same time. was sooo gad it was quiet no-one heard. :yfaint:


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## dave13

not as humorous as farts,but...I was grocery shopping today and while I was contemplating the produce my guts let out a very loud gurgle/rumble noise.It was busy because of the storm so I wasn't alone.It was one of those you can feel the gas moving inside as well as being loud enough for anyone within several feet to hear.I'm amused at peoples reactions.It was a prelude to a movement so I moved along. oo:


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## PenguinVic

Wow Steph - the gym is a brave step....

And yeah, you gotta love the rumbly tummy. Or evenings in front of the tv after 4.8g of mezavant....


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## steph_irish

thank you vicky, I've had 2 visits so far, I'm taking it very easy but so far so good,  I'm making the good days count, and I eat hours before I go. 
my main complaint at moment is possible gallbladder issues but that's just at night when I go to bed, cramping is just normal but managed with buscopan.
I had to google mezavent didn't now what that was, but it's similar to pentasa. I'm just capturing the moment tooting in front of the tv. ha ha ha 

And dave you really made me laugh, the look of confusion on peoples faces is hilarious to say the least. My partner says I sound like the titanic in it's final hours...(Nice) :ylol:
It's like when your at school...quiet classroom...and hungry, :blush: only our grumbles are magnified tenfold. :shifty:


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## dave13

Good to hear your working out Steph.I had my post-op visit this week and my Dr. cleared me to be more active as long as I "don't be a hero".I imagine his way of saying,don't over do it.Damn, I had planned to bungee jump from the rafters to the gym floor to make an entrance.I guess I better follow Dr.'s orders and reconsider,maybe I'll start with walking on my road instead. Especially since I don't belong to a gym.Seriously,my wife has a recumbant bike and I'll give that a try until the weather is better for walking outside. :smile: Have fun Steph and don't over do it! My stomach grumble was definitely magnified ten fold like you say.I make a wager with myself to see if people will try to ignore 'bodily function' noises or make a humorous(or rude)comment.I prefer the humorous comments. Keep the faith! Perhaps the rubber suit creature is really a progressive eco-minded individual working on a storage method to harness methane to power a bio-fueled vehicle...or not.


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## Lisamumofmeg

I'm also a newbie. my daughter has been recently diagnosed! Your post made me giggle. And gave me hope for her future. Good luck with everything!


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## PenguinVic

So we should all get rubber suits and we would be eco-friendly! Think of all the power generation we could contribute to - all those turbines we could turn, all the money we could save. And it's renewable!!! I reckon I could power a small town at present.

Steph, mezavant (mesalazine) is a slow-release anti-inflammatory, that's actually mostly used for UC. Not sure why my specialist has got me on it for Crohn's. But the most horrid side effect is all the wind. Ah well, I keep my teenage sons entertained - 8yo boy humour...you gotta love it....

And yeah the loud tummy rumbles are pretty special. :devil: They always come at the most opportune time... In the middle of a performance review, or in front of a class of first years, or at a dinner party. I am pretty open with my friends and work colleagues about my CD, and they are pretty understanding. So we just crack a joke and move on.

You guys are amazing with all the exercise - that's great. I read somewhere recently that exercise is so important for managing fatigue. Sounds counterintuitive to me, but it does seem to work. I try to walk the dogs most mornings before work, but that's as good as it gets. It's better than nothing.


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## PenguinVic

Welcome lisamumofmeg!!! 

Sorry you've had to meet us all this way. But hopefully you will find the friendship and support you need. And hopefully your daughter will too. It sucks having CD, but at least a diagnosis is better than living in limbo with an undiagnosed illness that's debilitating. Sending you both big hugs. 

I have found at times that laughter is the best medicine - if you can find a way of laughing at the illness and getting on with your life (as much as is feasible on any given day), that's the best way to deal with it.

When I was diagnosed, it took my dad all of about 2 seconds to link Crohn's with Crohn's (think the witches in Macbeth - I had to watch the Roman Polansky version at high school.... It has left indelible images in my brain....). 

So I decided I was going to start drawing a series of Crohn's and come up with some silly sayings. The drawings were going to form the front of some Christmas cards last year, although I never quite got around to that. And we have a lot of pooh jokes in our house, because I am not the only one with issues. If you can normalise it a bit and laugh it off it definitely helps. And you have to just plan to have some flat days sometimes. You laugh together, you cry together, but you keep putting one foot in front of another.


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## steph_irish

Eco warriors ha ha ha ha, :ylol: you guys have amazing terminology, I agree that laughter is most definitely the best medicine. Maybe we should all have a game of twister and bottle all that methane!

That's great news dave, remember 'DON'T BE A HERO' :dance: Maybe work up to that bungee jump or ab-sail into the Gym and make your GRAND ENTRANCE :ywow: 
I started with gentle walks. I didn't have surgery to deal with. I find the various supplements I'm taking help so much when fighting fatigue.

Vicky I'm on pentasa which is also Mesalazine, I also queried that instructions only mentioned UC. 


My thoughts for the day:
Laugh and the world laughs with you; fart and they'll stop.
My definition of bravery is a Crohn's sufferer chancing a fart


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## dave13

Lisamumofmeg said:


> I'm also a newbie. my daughter has been recently diagnosed! Your post made me giggle. And gave me hope for her future. Good luck with everything!


Hi Lisamumofmeg,welcome! It's good to laugh when you can.We go through stretches where it is difficult to see the humor in life and IBD.I laugh when I can.I especially like crohn's being the butt of the joke.(pun intended).May sound odd,but I feel better when I share a laugh with a fellow crohnie.Humor is healing.If a silly post can help someone smile and lighten their load a bit,it's a good thing.My wife would say I was foolish before crohn's and having a disease that so directly affects our 'bodily functions' just put more arrows in my quiver! I do have my low times but I cherish the times when I can be silly and feel 'normal'.I know I have a serious disease that will slam me again,but not today,or not right now at least.Remember you have to take care of your own health and needs too.I get very sad when I'm not feeling well and I see it affects my wife.She tells me I didn't ask for crohn's and it's not my fault.I'm still putting her through it though.Check out the parents with children of IBD support group.There is also a group for those who don't have IBD but have loved ones that do.Fight through the tough times and enjoy the smoother stretches with your daughter. The forum has really helped me find information,support and humor in crohn's.Keep the faith!
P.S.-don't watch too funny a movie after surgery,pulls on the staples :ghug:


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## steph_irish

Lisamumofmeg said:


> I'm also a newbie. my daughter has been recently diagnosed! Your post made me giggle. And gave me hope for her future. Good luck with everything!


Hi lisamumofmeg
Welcome... it's a tough disease but we have to find a sane way of dealing with it. (although reading back on our posts maybe NOT SO SANE!!) :ylol:
I wish you every success for the future and that your daughter responds well to treatment. Don't forget they are researching new treatments all the time. So all we can do is manage as best we can ensuring we put up the best possible fight.
Sending you a huge  hug :ghug:
steph


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## Babypink

Crohns brain, at last it all makes sense now. I'm not alone


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## PenguinVic

Yay - I'm doing my bit for the planet. Ecowarriors - I love it!

Ok, so Mezavant and Pentasa are the same thing.... It can get so confusing talking to Crohnies from around the world about the various meds we're on. The Prednisone/Prednisolone thing really confuses me. Are they the same drug, or different? Anyhow, I must ask my specialist about the reasons behind the Mezavant next time I see him.  But something is working - I am reasonably well at present (touch wood), although I saw my gastroenterologist the other day, and he was a bit worried about my kidney function. I'm on the highest dose of Mezavant, and it can have adverse effects on the kidneys. Just what I need....

And yeah, Dave, I agree with Steph re starting slowly. I had surgery in September (not Crohn's related) and at first, I started walking a couple of house blocks before the fatigue hit me. After a few days, I could make it half way down the street. And within 6-8 weeks I was starting to do a circuit of about 6-800 metres. I'm no fitness fanatic, but I am now (5 months later) pretty much back to where I was before I got sick. So maybe in a few months time, you can abseil down into the gym from on high??


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## PenguinVic

Yep, Babypink! Crohn's brain - or perhaps Crone's brain?? I think it works....

It helps to have a label for it, and to know that you're not alone.... I think it also helps family and friends to understand that there is a reason why we're so vague or forgetful at times. It's really frustrating to be so vague some days, but I guess we just have to work with what we have each day.


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## steph_irish

PenguinVic said:


> Yay - I'm doing my bit for the planet. Ecowarriors - I love it!
> 
> Ok, so Mezavant and Pentasa are the same thing.... It can get so confusing talking to Crohnies from around the world about the various meds we're on. The Prednisone/Prednisolone thing really confuses me. Are they the same drug, or different? Anyhow, I must ask my specialist about the reasons behind the Mezavant next time I see him.  But something is working - I am reasonably well at present (touch wood), although I saw my gastroenterologist the other day, and he was a bit worried about my kidney function. I'm on the highest dose of Mezavant, and it can have adverse effects on the kidneys. Just what I need....
> 
> And yeah, Dave, I agree with Steph re starting slowly. I had surgery in September (not Crohn's related) and at first, I started walking a couple of house blocks before the fatigue hit me. After a few days, I could make it half way down the street. And within 6-8 weeks I was starting to do a circuit of about 6-800 metres. I'm no fitness fanatic, but I am now (5 months later) pretty much back to where I was before I got sick. So maybe in a few months time, you can abseil down into the gym from on high??


What type crohn's do you have? 
I finally got my official results back which state crohns colitis, and I've got gastritis in tummy. (I thought i had gastro duodenal crohns)
I was diagnosed via colonoscopy on 19th December, I'm not getting my follow up with GI until end of march, all I've been told so far is 'I've had it quite some time'. :yfaint: 
I'm finding Pentasa great also although wasn't aware of kidney issues, so I'll be monitoring that. See it's always good to compare notes, learn something new all the time.
Read up on this before...Prednisone and prednisolone although they used in the same manner, they're equally effective, they're not to be confused with each-other.
Prednisolone is the drug of choice when hepatic (liver) disease or insufficiency is present.


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## dave13

I see my GI today for the first time since my resection.Three months! I don't mean to jump on any threads here,I'm just a bit nervous about this first meeting.I have to be late for work because of it and yesterday was my first full day back.Good timing or what?Since I am in remission my surgeon thinks the GI wont recommend any steroidal meds,maybe 5-ASA.I don't want any meds,but I will do what I have to if it will prolong remission.No witty remarks today...I guess I don't have the 'guts' to make a joke about this.That was lame,I admit it,I can't help myself at times.I fight stress with humor when I can.My wife is a saint for putting up with me.Keep up the good fight everybody.


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## ronroush7

You too, Dave.

 2


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## Babypink

Well my foggy head and headaches isn't helping at all.  Popped to my GP for blood pressure and it was spot on, so tomorrow ix managed to get an appt at my local hospital for blood test for iron deficiency as I am also sleepy and tired too.  I was told if its discovered my iron levels are low then they can give me an infusion just to get me to the levels I should be at.  Oddly enough my tummy, and stoma and bottom are fine, no problems its just my head!  Ugh


----------



## PenguinVic

Dave - keep your chin up.  I can't say I've been exactly where you are at present. But when I get down with this disease, I think of that blue fish Dory in Finding Nemo (if you haven't seen it, go hire it).

When she gets into a tough situation, she sings "Just keep swimming, just keep swimming, just keep swimming, swimming, swimming.... What do we do? We swim, swim, swim...."

I like Dory - she is as forgetful as I am. Must have Crohn's... ;-)

We're swimming alongside you, Dave.


----------



## PenguinVic

Babypink, sorry to hear you've been feeling so yuk.

If you are low on iron and you can get a transfusion, then go for it. It's a day of sitting around with a needle in your hand/arm, then after a week or two you really start to feel the effects and feel so much better.

Hope you get some answers.


----------



## PenguinVic

steph_irish said:


> What type crohn's do you have?
> I finally got my official results back which state crohns colitis, and I've got gastritis in tummy. (I thought i had gastro duodenal crohns)
> I was diagnosed via colonoscopy on 19th December, I'm not getting my follow up with GI until end of march, all I've been told so far is 'I've had it quite some time'. :yfaint:
> I'm finding Pentasa great also although wasn't aware of kidney issues, so I'll be monitoring that. See it's always good to compare notes, learn something new all the time.
> Read up on this before...Prednisone and prednisolone although they used in the same manner, they're equally effective, they're not to be confused with each-other.
> Prednisolone is the drug of choice when hepatic (liver) disease or insufficiency is present.



What a way to celebrate Christmas - oh by the way, you have Crohn's..... :devil: Well at least you have some answers, Steph. It's never nice being told you have Crohn's, but it beats being left in the dark. 

Looking back on my symptoms now (hindsight is wonderful!), we suspect I have had Crohn's for about 20 years, but I was only diagnosed in Oct 2013. It was a crushing blow, and yet a relief to know it was something real (and that I wasn't imagining it). 

I thought my life was over when I got the diagnosis. And the information brochures from the hospital, while in some ways helpful, freaked me out - strictures? fistula? stoma? You can't afford to think about the what ifs. But as I have started to recover from the flare, I have started to get much of my old life back, and I also have a renewed sense of how short my life is. I have one short opportunity to do the things I want to do with my life. So it has also been a plus, because it has shaken me out of my complacency.

I've got Crohn's in my oesophagus, stomach, caecum, terminal ileum and then multiple parts of the large intestine. It's unusually widespread, but fortunately not severe in any one place. I also have extra-intestinal issues, such as iritis and arthralgia, although I went for an eye check the other day and he said my eyes are looking really healthy.

Re Pentasa/Mezavant, they do need to monitor you for kidney/liver problems. Not sure how they do that in your neck of the woods, but I have to have a blood test every 3 months or so. My dr watches my creatinine levels as an indication of kidney function. My levels are a little on the high side at present, but not enough to warrant anything more than a watchful eye.


----------



## steph_irish

Hi Dave, how could you think you'd be jumping in on a thread?  We're all in this together and anytime you need support we're here. :ghug:
I've finally come to the conclusion that anything crohns related must inconvenience as much as possible. (They should include that in a list of symptoms)
I'm sending you the luck of the Irish that everything goes well for you.
DEEP BREATHS & KEEP THE FAITH :ghug: (let us know how you get on)

Hi vicky I think I'm suffering with crohn brain 2, You had stated in your first post where crohns affected you. OMG my apologies  u really have a widespread case, I hope your remission lasts a long long time 
I'm gonna ask if my bloods should be monitored also, rekon that's been overlooked with all other ailments I've had recently :ghug:


----------



## PenguinVic

Crohn's brain strikes again......:ylol: Yeah, like I said it's widespread but not severe. I'm not 100%, but I am pretty good now. At least I can get on with my life.... There is hope at the end of a flare - hope that there won't be another one for quite some time!!

How'd you go today Dave?


----------



## steph_irish

Yep! lets officially add 'crohns brain' to the symptoms list....:ylol:

Every time I see someone in a fog or a state of confusion :ybatty:
I will pause for thought and wonder 
could they be suffering from the dreaded 'crohns brain'?​


----------



## dave13

Thanks for the support everyone! My first meeting with my GI went pretty good.I had a notebook with a couple of pages of questions to ask him!I go for blood work today.He wants me on 500mg of Pentasa twice a day.He said it is usually four times a day but feels twice a day would be good for me.He is suprisingly of the opinion that the less meds you are on the better.He described the benefits Pentasa would have to help reduce future stricturing and how it may help me stay in remission.If I really did not want to be on meds he said he would respect that.We could see how I do and alter my treatment as needed.I opted for the Pentasa and a,hopefully,prolonged remission.Now I am ready to take the 5-asa I didn't want in the first place,my obamacare insurance does not want to pay for it.If I paid for it out of pocket my pharmacist said it would be 400+$ each time I filled it! Since I would take two doses a day instead of four,the prescription would last me two months rather than just one month.So it would be 200+$ a month instead of the 400$.My wife doesn't know about the hassle our insurance is giving me.Today is my day off so I hope I can get things sorted before she gets home this afternoon.My medical expenses have taken all our savings,we had no insurance when I had my two surgeries.We cashed in my IRA as well.This would really stress my wife.I called my GI's office and they said they will send the preauthorization to my 'obamacare don't want to keep you healthy if there is no profit in it for us' insurance provider.My GI's office said they don't know how long this will take because of how new these obama care providers are.I have to check back with them later today or tomorrow. I'm so stressed and sad right now.Jumping through the hoops I can deal with.I don't want to put more stress on my wife,she has been so supportive.She has her own health issues that this would exasperate.I'm probably blowing this out of proportion,sorry for the drama.I know there are fellow crohnies who have it much worse than I do.We just don't have anything left to cut out of the budget and I'm frustrated.I'll go for my blood work,that always cheers me up. I'll bring my dogs for a walk first.There romping and playing will be good medicine for me,and I don't need my insurance co. to pre-approve it! Rant over for now,hope I didn't bring anybody down with it. Just keep swimming...swim,swim,swim...:ghug:


----------



## PenguinVic

Haha Steph... I think there's more than one cause for a foggy brain :ylol:


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## PenguinVic

Oh wow Dave. Never apologise for having a rant here. That's what we're all here for. It's good that you don't need a whole lot of medication, but wow $400+. That's criminal. It feels sometimes like life just doesn't let up with Crohn's. But you have to keep swimming, swimming....
Hope your walk with the dogs helped a bit. I find it helps me to get out and clear my head sometimes. And the dogs generally don't argue back (except that one of mine is a strong-willed scent hound...)


----------



## dave13

In a more rational frame of mind right now.If I get denied I can appeal in person.I could argue my dosage is twice a day,not four.There thinking the usual dosage is four a day for a 30 day period.Taking two a day would extend the prescription by 50%.I would only need to fill it every other month.If I can actually talk to a person maybe I could persuade them.


----------



## steph_irish

Hi Dave
I'm glad your visit went ok but not happy that your stressed.
It makes me realize just how good the NHS is in the UK. $400 or even $200 is such alot of money to dish out on top of day to day living expenses. I hope you get it covered under obamacare. I don't see how your blowing things out of proportion, sounds like your in a scary place. U.S. is tough when it comes to healthcare.  If it's refused, APPEAL for sure I'm sure it will seem more reasonable that you are only on half the dosage. Prevention is better that cure, Right?
Sending you a huge hug :ghug:


----------



## dave13

Hi Steph,they haven't got back to me yet.You would think preventative measures would be a logical step to take.Just doesn't seem to be the way they think.I'll work on the things I can control and go from there.It's great you have the NHS in the U.K..Are there long waits for tests or procedures?Do you need to be referred? It sure seems the better way to go.


----------



## steph_irish

PenguinVic said:


> Haha Steph... I think there's more than one cause for a foggy brain :ylol:



:ylol:


----------



## steph_irish

dave13 said:


> Hi Steph,they haven't got back to me yet.You would think preventative measures would be a logical step to take.Just doesn't seem to be the way they think.I'll work on the things I can control and go from there.It's great you have the NHS in the U.K..Are there long waits for tests or procedures?Do you need to be referred? It sure seems the better way to go.


HI Dave
That's all you can do dave...swim swim swim :ghug:

RE NHS
Yes you need to be referred by GP, they do the necessary tests then, if results are not ok they send you for further investigation.
Like anything it depends on the severity of your symptoms.

Constant D and Rectal bleeding, need to rule out cancer so 2 weeks to see GI then diagnosed within 2 months. (would have been sooner but she thought I had post infectious IBS after campylobacter infection)...I wish :thumbdown:

My colonoscopy was on 19th dec 2013 but my follow up isn't until end march. But meds are doing their job, I know I'm worried to see just how bad the damage is but i'll think about that closer to the time.

We have a taxation on our wages called NHI that is compulsory, I think Obama care has something similar but U.S. still rely heavily on private market rather than public sector.
Our government are trying to privatize the NHS....BOO Tories lets hope they don't succeed.

I truly hope everything works out ok Dave :ghug:


----------



## dave13

Hi Steph,
 Thanks for the info.I would rather have the cumpulsory tax on my wages,instead of what we have.My wife and I are in that lovely financial bracket.We make too much to qualify for any assistance and not enough to afford all our medical bills.She is very good at budgeting,putting what little $ we have extra at the end of the week away.Since I haven't been working it has been tough.I've been working partial days for the last two weeks,my first work since November.I'm happy to say my Dr. has cleared me to go back full time as long as I take it slow and ease back into it.I'll be able to contribute again...swim,swim,swim.The cancer was ruled out?My Dr. showed me the colonoscopy results after the procedure.Lovely images.The waiting and worrying really does suck.Good thing it doesn't add more stress to your life.:ybatty: I hope everything works out for you as well.I'm sure you would rather have "pain in the ass" be a figurative phrase when dealing with your health. 'Do not go gentle into that good night...and so on. :cool2: :ghug:


----------



## steph_irish

Aaah!  so you don't have compulsory tax on wages, I assumed that's how they'd cover obama care similar to NHS.
It's tough on those of us that want to work and contribute to society, we contribute for years, pay taxes etc. seems so flawed

*sometimes it would be nice if society could pick you when you fall and tell you not to worry.* 

This is totally off the beaten track, you've got dogs right? My dogs just farted, it's really nasty and now I've lost track of what I'm saying. Reckon I'm high on fart fumes :stinks:
I've just taken in a second dog lovely mastiff (rescue) since he's been here I've got windows open for ventilation. 
*He's got serious flatulence issues* I know he's changed his diet but surely he'd be used to this after two weeks. My other dog is normal

Any Tips? He's worse that me and really loud. :yfaint:


----------



## PenguinVic

Sounds like the NHS is similar to our Medicare system in Australia. We pay a 1% levy in addition to tax which funds Medicare. And if your income is over a certain amount, it jumps up to 2% if you don't have private insurance.

For emergency treatment it works brilliantly. But for chronic conditions, the system is rapidly breaking down. I had to pay for my colonoscopy / gastroscopy 18 months ago when I was diagnosed (I got it done privately but didn't have insurance at the time). If I had waited in the public system, I would have been waiting 18 months for a colonoscopy. At the rate I was going, I would have been dead (literally) by the time I got in.... We have since taken out private insurance (which also covers Crohn's related issues), so I can get straight into a private hospital whenever I need anything.

Our delightful new government (go Abbott ) is trying their level best to privatise our health system, along with everything else that moves. How crazy is our world - Obama is trying to adopt a Medicare/NHS system, while our governments are moving towards privatisation... Privatisation is often justified as bringing greater efficiency and accountability, but it doesn't. It brings underinvestment, decisions made commercial-in-confidence, and services only for those who can afford to pay.

Society is harsh, Steph, especially at present with our neoliberal/capitalist orientation. We haven't even 'failed' - we've got a chronic illness that we couldn't have done anything to prevent - and it leaves us totally vulnerable. But at least we have each other on a forum such as this. I honestly don't know what I would have done if I hadn't chanced upon this forum late one night.

Sorry, rant over. :yrolleyes:

I really feel for you Dave. I felt totally laid bare when I was first diagnosed, especially when I was told that my contract with my then-employer wasn't being renewed. We have a mortgage to pay, and school bills, and I had no idea how I was going to get out of bed each day, let alone work. 

Thank God I've had consistent work since then, but it's only been casual, which adds its own set of stresses. And I am working harder than ever.... But we get by. We just have to take life one step at a time. 

Success is getting up one more time than you fall.

Today I will fight again. I will not let this disease own me or define me....

Oh and Steph, perhaps re the dog: check which brand of dog food you're giving him. Some of the cheaper brands are bulked up with more rice and vegies, and tend to bring on more wind. If you can afford a higher quality brand, that may do the trick?? Otherwise, just keep a can of deodoriser on hand when you're sitting watching tv. :smile: We have a windy dog too.... He just adds to the general atmosphere in the living room some evenings... And when he gets too bad, at least we can banish him to the cold night air for a while. Can't do that with me or the other windy humans in the household.... :lol2:


----------



## dave13

Rant away Vic...frustrates and saddens me insurance providers balk at preventative measures.My Dr. wants me on pentasa to help reduce future stritctures.If it was something I didn't need I can understand their reluctance. I'm trying to prepare myself for the all too likely scenario of managing crohn's without the help of pentasa.This doesn't help my cause,I do need four doses per day.I thought it was two.I called the Dr.'s office today and was told my GI is writing my provider a letter.It's the Dr.'s way to appeal the initial refusal.It's wait and see now.H,m,m,m...reduce stricturing,reduce the chance of blockage and surgeries,help prolong remission.There right,why would I need that. :ybatty:

I prefer flatulant dogs to insurance providers.Hi Steph,not that your a flatulant dog or anything.It may take longer than a couple of weeks to get use to new kibbles.Maybe your mastiff has allergies?We have a rotti/shepherd who doesn't handle dairy very well.We feed them a grain free kibble.It does cost more,around here at least.Table scraps might do it also.My state has a 'Love,Respect,Adopt' license plate.It has a dog,cat,horse and a bird on it.I have it for my truck.Our dogs are rescue dogs too.My avitar is Dobbie,a german shepherd.My little girl.Our other dog is Bruce.Bruce just turned two and is 135 pounds.Your mastiff must be on the big side.

  I appreciate you guys helping me stay sane.I wore a t-shirt today with 'some days it's not worth chewing through the restraints' on it.Kinda says it all.Swim,swim,swim...:ghug:


----------



## steph_irish

PenguinVic said:


> Sounds like the NHS is similar to our Medicare system in Australia. We pay a 1% levy in addition to tax which funds Medicare. And if your income is over a certain amount, it jumps up to 2% if you don't have private insurance.
> 
> For emergency treatment it works brilliantly. But for chronic conditions, the system is rapidly breaking down. I had to pay for my colonoscopy / gastroscopy 18 months ago when I was diagnosed (I got it done privately but didn't have insurance at the time). If I had waited in the public system, I would have been waiting 18 months for a colonoscopy. At the rate I was going, I would have been dead (literally) by the time I got in.... We have since taken out private insurance (which also covers Crohn's related issues), so I can get straight into a private hospital whenever I need anything.
> 
> Our delightful new government (go Abbott ) is trying their level best to privatise our health system, along with everything else that moves. How crazy is our world - Obama is trying to adopt a Medicare/NHS system, while our governments are moving towards privatisation... Privatisation is often justified as bringing greater efficiency and accountability, but it doesn't. It brings underinvestment, decisions made commercial-in-confidence, and services only for those who can afford to pay.
> 
> Society is harsh, Steph, especially at present with our neoliberal/capitalist orientation. We haven't even 'failed' - we've got a chronic illness that we couldn't have done anything to prevent - and it leaves us totally vulnerable. But at least we have each other on a forum such as this. I honestly don't know what I would have done if I hadn't chanced upon this forum late one night.
> 
> Sorry, rant over. :yrolleyes:
> 
> I really feel for you Dave. I felt totally laid bare when I was first diagnosed, especially when I was told that my contract with my then-employer wasn't being renewed. We have a mortgage to pay, and school bills, and I had no idea how I was going to get out of bed each day, let alone work.
> 
> Thank God I've had consistent work since then, but it's only been casual, which adds its own set of stresses. And I am working harder than ever.... But we get by. We just have to take life one step at a time.
> 
> Success is getting up one more time than you fall.
> 
> Today I will fight again. I will not let this disease own me or define me....
> 
> Oh and Steph, perhaps re the dog: check which brand of dog food you're giving him. Some of the cheaper brands are bulked up with more rice and vegies, and tend to bring on more wind. If you can afford a higher quality brand, that may do the trick?? Otherwise, just keep a can of deodoriser on hand when you're sitting watching tv. :smile: We have a windy dog too.... He just adds to the general atmosphere in the living room some evenings... And when he gets too bad, at least we can banish him to the cold night air for a while. Can't do that with me or the other windy humans in the household.... :lol2:


:ylol: guess it will be the deodorizer then :ylol: :stinks:
I agree with everything you said about privatization vicky it's a joke.


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## steph_irish

Believe it or not my job provides private healthcare cover....But guess what it doesn't cover chronic conditions!!! Luckily for now I have NHS to fall back on
Vicky thats awful that you had to cover your own procedures, like I said it would be nice to have society to give back a little sometimes.

Take take take..Tax Tax Tax :ybatty:

And dave I feel so frustrated that you have to be in this position, I'm on pentasa  
4 times daily I'd be afraid what things would be like without it. Just seems so unfair :ghug:


----------



## dave13

steph_irish said:


> Believe it or not my job provides private healthcare cover....But guess what it doesn't cover chronic conditions!!! Luckily for now I have NHS to fall back on
> Vicky thats awful that you had to cover your own procedures, like I said it would be nice to have society to give back a little sometimes.
> 
> Take take take..Tax Tax Tax :ybatty:
> 
> And dave I feel so frustrated that you have to be in this position, I'm on pentasa
> 4 times daily I'd be afraid what things would be like without it. Just seems so unfair :ghug:


I empathize with you Vicky about paying for procedures.To think they would have so little compassion,caring and basic ethics to tell you to wait 18 months!That is what really depresses and ticks me off about health care providers.You'd think your asking for plastic surgery to make your lips more puffy!...which you probably would get the o.k. for. I just don't understand their reluctance to promote preventative care.I mean health care providers everywhere.Even if we are no more than numbers on an accountants ledger,especially so,would you not keep your investment in optimal condition? Provide frequent routine maintenance to minimize long term expenditures? I drove myself crazy thinking about this the other day when I was denied pentasa.Thinking of a human being making the decision to deny another human being a drug that could save his/her life because of money.Not because of the availability of the needed drug.Not because of the cost of making the drug,which I'm sure is nothing compared to the patients cost when paying the monthly price.Because only so many people can be approved to meet the bottom line.That is what really saddens me.Notice there not 'Good Health' care providers.They are health care providers,whatever they decide health should be.Now that I depressed everbody...

   Despite that rant I feel pretty good today.Wow,Vicky,I had to scroll back to the top to see what set me off. I must have put piss and vinegar in my coffee instead of cream...I feel another rant coming on so I will leave now...:ghug: o.k. I'll just say in leaving,"that's right crohn's,I said coffee!"


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## steph_irish

Wow what a way to put it dave!
'Thinking of a human being making the decision to deny another human being a drug that could save his/her life because of money'

That should be your care providers new slogan.

Ireland can join that too, the country is gone 2 pot since recession.
My mum has worked hard her whole life, paid her taxes etc. she developed a painless ulcer on her upper palette only noticed because her filling fell out. turned out she had mouth cancer, nice little tumor growing.
She was so so lucky it was caught early but had to have a large section of her palette removed. naturally her speech was affected.
She was initially REFUSED DISABILITY BENEFIT! by Irish government stating she was fit to continue working...REALLY! :ymad:
We Appealed the decision, got letters from her oncologist, doctor and then got the MP involved (local representative), The decision was overturned. and she got her benefit.
Rightfully so.


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## steph_irish

Hi guys 
Just back from ultrasound today, don't now if you remember I thought I had gallbladder issues.
Feeling down bout it, it turns out it's just another crohns ailment. 
No gallstones, For once It would have been nice for docs to say..Oh we can fix that. :ymad:
Back to docs tomorrow to see how I can manage pain when I try to sleep.
Don't know the luxury of a full night sleep anymore.
Vent over :ghug:


----------



## dave13

steph_irish said:


> Hi guys
> Just back from ultrasound today, don't now if you remember I thought I had gallbladder issues.
> Feeling down bout it, it turns out it's just another crohns ailment.
> No gallstones, For once It would have been nice for docs to say..Oh we can fix that. :ymad:
> Back to docs tomorrow to see how I can manage pain when I try to sleep.
> Don't know the luxury of a full night sleep anymore.
> Vent over :ghug:


Never thought I'd tell someone I wish they had gallstones.I understand you feeling down about it.I hope your doc will be able to help you.Proper rest is important for us to heal.Even a few hours of quality sleep will help.We are here for you when you feel down :ghug:


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## steph_irish

dave13 said:


> Never thought I'd tell someone I wish they had gallstones.I understand you feeling down about it.I hope your doc will be able to help you.Proper rest is important for us to heal.Even a few hours of quality sleep will help.We are here for you when you feel down :ghug:


Thanks dave
I know right, 'Please let it be gallstones' would sound weird to anyone else.
At least you guys understand what I mean :ghug:


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## PenguinVic

Hiya! I've been away for the weekend and just read all your posts. (We have an international visitor here at present, so we went camping - yes our tent was planted firmly near the amenities block!!!)

I feel for you guys. Sounds like you're both having a rough time at present. It really is a sh** disease.... Fight on and make sure you get the treatments you've paid for Dave! If your insurance is meant to cover that, then they damn well should.

I was diagnosed with bursitis in my shoulder the other day. When I looked it up online, I found several sites that said it can be brought about as a result of inflammatory diseases.... Great :-}

I recently purchased a t-shirt, which I wore yesterday. It says "It's all sh**s and giggles, until someone giggles and sh**s". People give me funny looks, but I think with Crohn's I've earned the right to wear it :cool2:


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## dave13

Hi Vicky
    Hope you had fun camping.Good to get away when you can.I'm actually feeling pretty good.This was my first week back to work.I was exhausted at the end of the week.It's hard to believe I've been out of work since November! I'm fortunate to have an understanding employer.I have a couple of twenty somethings who work for me and have been great.I'm easing back into it and feeling stronger each day. :smile: Working again also eases the financial stresses a bit.My wife was the sole income earner for close to three months.Now I'm feeling better I can also help around the house again.
     I got the results from my blood work.My B-12,folate levels,blood counts and sedimentation rate were all normal or within normal range.My GI said he was sending a prior approval to my provider for the pentasa.We have to wait and see what the provider decides.I'm prepared to go on managing my crohn's on my own if it comes to that.I don't really have a choice.The decision hasn't been made yet and I will remain optimistic they will approve it.They haven't beaten all the hope out of me yet.I'm in remission and thankful for that.I'm working again.I've even stopped losing weight.I feel pretty fortunate.The support you guys give helps a butt load! :ghug:


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## steph_irish

HI Vicky
Hope you had a great time, I just looked up bursitis sounds pretty painful. There's so much that goes with this disease. I like your t-shirt :lol: definitely earned the right to wear it 

Dave glad to hear your blood work was normal, still hoping for your decision on Pentasa. fingers crossed. :ghug:


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## dave13

I would think I would hear by the end of the week,one way or the other.I'll call mid week if I don't hear anything. :ybatty: swim,swim,swim...


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## steph_irish

dave13 said:


> I would think I would hear by the end of the week,one way or the other.I'll call mid week if I don't hear anything. :ybatty: swim,swim,swim...


swim swim swim :ghug:


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## PenguinVic

Glad to hear your blood tests came back looking good, Dave. Fingers crossed you get funding for your Pentasa.

The bursitis can be painful if I move my arm the wrong way - it's like hitting your thumb with a hammer, only it's your whole arm. But if I don't move it the wrong way it's not too bad. Just hoping I don't have to have cortisone shots into the affected area. Normally they treat it with NSAIDs to reduce the inflammation, but of course with Crohn's I can't have them. Grrr... On the bright side, it does get me out of a range of household chores ;-)


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## dave13

Getting out of chores isn't too bad.Would you have to get more than one shot? One painful shot,isn't great,but is only one.More than one...hope you feel better! :ghug:


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## PenguinVic

Getting out of chores is a pretty good deal in my books ;-)

I don't know whether I would need only one shot, or several. I guess I will wait and see. Fingers crossed it corrects itself, so I don't need to go there...


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## dave13

maybe a topical,like arnica gel,would help alleviate some discomfort? I hope you feel better,maybe another camping trip! My back aches just thinking of sleeping in a tent on the ground! Swim,swim,swim...:cool2:


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## steph_irish

Ouch vicky that sounds so painful, Chore avoidance is the best cure ::dance:,  I was curious about cortisone shots, they don't sound to pleasant.
They say there used once every 3 to six months. fingers crossed it'll sort on it's own, plenty of rest :ghug:


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## PenguinVic

I don't sleep on the ground anymore when we go camping!! I have a stretcher bed, with a soft-ish mattress on it. Quite comfortable!

Yeah, I am really focusing on resting my shoulder so I don't have to go for shots... Swim, swim....


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## dave13

Hi guys
  Today is the day I told myself I would call my GI's office and get an update on the pentasa.One moment I want it,the next I don't,than I want it again...I'll call them when I get out of work this afternoon. :ybatty:


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## PenguinVic

Fingers crossed for you, Dave!!

Just saw my physio re the bursitis. I've got lots of exercises to do, as well as resting it from specific movements. And I have a 40-50% chance it will heal ok with this treatment. Otherwise, it's cortisone.....


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## dave13

Hi Vicky
    A co-worker told me a topical application of castor bean oil may give some relief.Something to think about.
   I did hear from my GI's office.I was approved by my provider for pentasa.It would cost me a $423/month co-pay to get it.Needless to say,it is out of my reach.I'll call my provider at some time and try to talk to someone about why it is so expensive.
  I guess I'm on the 'control what I can and hope for the best' plan.I suppose we all are,really.
     swim,swim,swim...:ghug:


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## steph_irish

Fingers crossed all will go well vicky and you recover 100%,
I don't understand Dave, you've been approved for pentasa but it will still cost you $423 a month. I had to Google co-payment that is ridiculous.
You system makes me angry


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## PenguinVic

$423 per month?? That makes absolutely no sense, Dave. You can get it online for about $165 per month. Not sure if that is legal in the US (you would have to check for yourself). But if so, maybe it would be cheaper for you to bypass the insurer??


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## dave13

I checked out a link Steph sent me.It seems promising.Even with the shipping it is less than half of the U.S. price.
    I wont go on a rant on how vile these companies are...right now.I will post what happens next.Trying to jump through the right hoops is harder than it looks.  
           Dave  :ghug:


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## dave13

I talked with my GI's office today.I talked with Briana,a helpful young women.She checked out my providers formulary and said canasa and asacol are listed.I told her about the MedCenter Canada site and their price for pentasa.I gave her the phone number and she said she would check it out.
   My GI is in surgery this morning.Briana said she will get together with him later in the morning.They will get back to me this afternoon.She'll let him know about the Canadian site.
   I'm gonna start a new thread and ask other crohnies there experiences with canasa and asacol.
   Hurry up and wait.I guess today is a swim,wait,swim,wait,swim kinda day.
                                           :ghug:


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## dave13

I forgot to mention Briana said they have co-pay vouchers at the office I could use to save more $ on the canasa or asacol.I'm not really sure what those are,all new to me. :ybatty: :ghug:


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## steph_irish

Seems they're both yet another name for mesalamine
One is rectal suppository the other oral.
Canasa is rectal suppository and asacol (same as pentasa) is for oral

check this out

http://www.medicinenet.com/mesalamine/article.htm

Funny how more affordable options appear when you query the cost of pentasa.

Hmmmmm!


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## dave13

If asacol is cheaper and does the same thing.A 5-ASA,just another name.I will be happy with that.If the GI's office is willing to pay for part of it if I choose asacol than even better.
   We will go over my options when they call me back.I would rather have the less expensive option if both give the same results. :yrolleyes:
  It will be a couple days before I hear from them.
                                             :ghug:


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## PenguinVic

This is an exciting development!! Fingers crossed something works out for you Dave.


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## dave13

I understand asacol has been discontinued by the manufacturer.I was checking this out on another thread.Replaced with asacol HD,sounds more expensive.I guess Lialda is something to check out as well.More questions for my GI. :confused2:


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## PenguinVic

Keep asking until you get some answers! Hope you can get the meds you need real soon!


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## steph_irish

I agree with vicky Dave don't give up :ghug:
Recovering from night shift so not very talkative today.
Hope it works out with GI Dave, You need a break some good news would be nice :ghug:


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## dave13

I talked with my GI's office this morning.I was told my Dr. would call me before their office closes.They close at three and I heard nothing.I get a call on my mobile at 7 this evening.It was my GI calling me to talk about meds! He said he was busy all day and wanted to talk with me before he headed home.
    He is fine with me going through the Canadian site for pentasa.He feels the asacol would not help me.It wouldn't release until it was too far down the small intestine.My resection was in the upper jejunum,closer to the duodenum.
     I called my surgeons office today,the Dr. that did my resection and inguinal hernia.I have a painful area under my resection scar.A nurse told me it could be a suture that did not dissolve and is making its way to the surface.She does not think it is an incisinal hernia,could be,but hopefully not.I would be unhappy if it was.She said that my sutures should have dissolved around now and if one did not than the pain I'm feeling could be the suture.My hernia really hurt.I'm hoping where my scar is from my belly button down to my nether regions and the only spot that hurts is a small section of the scar-it is not a hernia.
    Despite the new pain I am optimistic.


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## steph_irish

dave13 said:


> I talked with my GI's office this morning.I was told my Dr. would call me before their office closes.They close at three and I heard nothing.I get a call on my mobile at 7 this evening.It was my GI calling me to talk about meds! He said he was busy all day and wanted to talk with me before he headed home.
> He is fine with me going through the Canadian site for pentasa.He feels the asacol would not help me.It wouldn't release until it was too far down the small intestine.My resection was in the upper jejunum,closer to the duodenum.
> I called my surgeons office today,the Dr. that did my resection and inguinal hernia.I have a painful area under my resection scar.A nurse told me it could be a suture that did not dissolve and is making its way to the surface.She does not think it is an incisinal hernia,could be,but hopefully not.I would be unhappy if it was.She said that my sutures should have dissolved around now and if one did not than the pain I'm feeling could be the suture.My hernia really hurt.I'm hoping where my scar is from my belly button down to my nether regions and the only spot that hurts is a small section of the scar-it is not a hernia.
> Despite the new pain I am optimistic.


Hi Dave
Thats great news on the Pentasa, sorry to hear you've got new pain though.
Does that mean more surgery? :ghug:


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## dave13

Hi Steph,if it is a suture it should eventually come through the skin and I just trim it.Hurts but will run its course.If it is a herniaI would need another surgery.I don't want another procedure.


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## steph_irish

OMG of course you don't, you've been through enough on that front. Lets hope it's a suture then   (sounds painful)


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## PenguinVic

Fingers crossed the suture comes out ok, Dave. You could do with a bit of plain sailing for a while....


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## dave13

Thanks Vicky,it's sore today but doesn't seem to hurt like it did the last two days.I push down on it and I feel a small hard nodule under the scar.The nurse said when you push down and what you push against recedes back in... is not  good.The fact it is hard helps rule out the incisinal hernia.It could still be,but less likely.I would think I would be in more pain,instead of soreness and discomfort,if it was a hernia.I see my pcp in two weeks.I feel I can wait that long.It may feel fine by then.If it feels worse I'll have it checked out sooner.

                              :ghug:


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## PenguinVic

Sorry to hear it's so sore, but hopefully it is only a stray stitch.

Have you heard back re the meds yet? And how is your return to work going?

And how are you doing Steph? Smooth sailing at present?


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## dave13

Hi Vicky;The bump under my scar is feeling better.I run my finger along the scar and I still feel the bump.It doesn't hurt like it did.Still sore,but not hurting.I'm hoping it's a suture that may be slow to dissolve.It's all new to me.It's my first surgery,I have nothing to compare it to.

Work is going o.k..I'm getting some stamina back.The first week was tough,the second was a little easier.So far this week is going alright.The first two weeks I left early a couple of days.I'm determined to make it through my third week without leaving early.

I've been looking into area gyms the last few days.I actually joined one last night.I went through the orientation.It should be interesting.I'm not a gym kinda person but I want to be proactive.They even have a pool so I can swim,swim,swim...:ghug:


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## steph_irish

PenguinVic said:


> Sorry to hear it's so sore, but hopefully it is only a stray stitch.
> 
> Have you heard back re the meds yet? And how is your return to work going?
> 
> And how are you doing Steph? Smooth sailing at present?


Hi Vicky I'm not doing too bad, had pancakes on shrove tuesday, (I love them soooo much) and thought I was gonna collapse with the pain. Crohns has officially messed up my life  I'm back at work phased return, It really makes me aware of just how crampy i get. hopefully it'll sort out once I get settled. Sometimes stress triggers cramps.

How are you holding up?


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## PenguinVic

Dave, so glad to hear your scar is feeling a bit better. That must be a relief, given the possible alternatives... And glad to hear your return to work is going ok. Take it easy and don't push yourself too hard. I think I pushed myself way too hard in the early days and it really backfired in terms of their level of support for me, not to mention my physical health.... Good luck with the gym. Yay - you can keep swimming, swimming..... :ghug: You are braver than I - if I can walk my dogs for 30-60 mins in the morning, I think I'm doing well.

Steph, sorry to hear the pancakes backfired. That's a real downer. I found there were lots of foods I just couldn't eat for months until my system had settled down. Eventually I got most things back (except pepper, and a real limit on coffee). Keep your chin up and keep swimming :ghug: And perhaps try gluten free pancakes?? Or buckwheat?? 

I'm going ok. It's been a super stressful week at work, and my inner crone is feeling it today... the D is working overtime. And I feel like I have barely slept all week. The shoulder is starting to resolve, although I still keep catching it - it's simple tasks like getting dressed that seem to be most difficult. I'm going to a free ballet concert tonight, and planning to do some unwind stuff over the weekend. So hopefully I will have regained my inner equilibrium by the time the new teaching semester starts on Monday!!


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## dave13

Hi Guys! I'm not pushing too hard at work,Vicky.I try to do my best no matter how I feel.I do it more for me than the company.I am realistic about it.I know if I push too hard I'll pay for it physically and miss more work.A bit counter productive.I'm fortunate to be able to sit for a moment or two if I have to.Vicky,sounds like your employers attitude turned into the 'look at her work,she can't be that bad off' attitude.They don't realize what it takes out of us.I'm exhausted at the end of the day.Co-workers get a head cold and sniffles and they wonder why I'm not playing into their drama and spoon feeding them chicken soup!I'll stop...I feel a rant coming on.I'm kinda cranky tonight,I guess.

I hope the ballet takes some of the stress away.A weekend to unwind will help too.Stress gives me the urge to 'go' even though there's no payload to drop,so to speak.Just a perk from our new normal.Take care of your shoulder and don't let the bastards at work get you down!There's a country song with a line.."going through the big 'D' and I don't mean Dallas".Has a whole new meaning to me now. :eek2:

Too bad about the pancakes,Steph.Sucks we find that out by trial and error.I've been GF since my resection.GF pancakes are pretty good.Did you have a lot of sweet stuff on them? 

                                      :ghug:


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## steph_irish

Hi guys I'll definitely try the GF ones next time, No Dave had no sweet stuff on them.

My system is completely messed up since returning to work. So I'm feeling both you guys on the D front and cramping 
Vicky sounds like your employers have as dave said 'look at her work,she can't be that bad off' attitude.
What asses!!! They haven't a clue what we go through just to make it to work on a daily basis.
My colleagues are all crohns experts you know! so it's great to work in a large organisation full of clueless advice and assumptions. (Bitchy rant coming on) :lol:
Anyway, I agree with you Dave I have no sympathy for someone that complains about a minor ache and pain.
Our staff car park is around 30 mins from our place of work , so my Managing Director reviewed my health case file and accepted my application to park directly adjacent to work. (which I am so thankful for) as I've stressed the need to be near facilities at all times.
Already people are bitching about it. They feel they are worthy because they have aches and pains (when I know they haven't, they seem to forget I work with them) they applied
to park closer to work months ago. 

Anyway guys Swim swim swim :ghug:


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## dave13

Speaking of 'D',cramping and bowel functions in general...I was out with the dogs the other morning.I stuck close to the house because I new I still had a morning movement in me.(gotta love poop talk)Sure enough,I had to head back inside to deal with matters.The dogs and I enter the house and my wife jumps out from the closet to scare us! All I was thinking was 'I hope I make it to the bathroom,I hope I make it to the bathroom' when she jumped out.I thought I messed myself right there.She felt bad about it as I raced to the toilet.Making it just in time.I asked her if that was a good thing to do to someone with IBD first thing in the morning? 

Jump from a closet and scare a German Shepherd ,a Rottweiler,and someone with bowel issues. :eek2:Could have gotten messy.We had a good laugh.I don't think she will do it again.

Thought I'd throw that in.She could post it on the 'spouse/partner support forum' as 'how to have fun with your better half that has CD'.She may have thought,"If Dave can hold it and not mess himself when I jump out,we can make it through any road trip".She was trying to help me...I see that now. :ghug:


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## steph_irish

Ha ha ha ha Dave! your relationship with your wife sounds hilarious thats cheered me up for sure :ylol:


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## dave13

steph_irish said:


> Ha ha ha ha Dave! your relationship with your wife sounds hilarious thats cheered me up for sure :ylol:


I hoped it would bring a smile  She's a keeper,I suppose.


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## PenguinVic

:ylol::lol2: Dave, you certainly made me laugh - and wince - all at the same time. Your wife is definitely a keeper!! Being able to laugh about CD _together _is gold. Although I am with you - scaring the crap out of someone with active CD is probably not the best idea.... Could have been swimming up sh** creek, literally.

The powers that be at work are usually not too bad - they have thrown a lot of work my way, and shown a great deal of trust in me. There is just a lot going on at present, and unfortunately my contract got caught in the middle of it. Hopefully it will settle down now and everything will blow over. But I did start job hunting last week - until my husband talked me out of it. I've been dreaming for ages of doing the work I am doing now, and I would get so frustrated working anywhere else. And while it was disappointing that my last workplace chose not to renew my contract, they did look after me while I was there.... So yeah at some levels I'm bummed with them, but at others I can't complain. And it gave me the push I needed to jump ship and take some risks to achieve some of my major career goals.

Steph I am glad to hear you are allowed to park close to the office. That's gold. When I was flaring, I had an hour commute by train and then a 5-minute walk to the office. It got pretty hairy at times.... Staggered out of the train one day, and had to sit down for 5-10 minutes before I was confident I had the energy to walk 20 metres to the escalators without fainting. And had some interesting other sessions sitting on the train trying to figure out which stations had bathrooms and whether I would be able to get to them in time. :hallo3: oo:

I am feeling a bit better today, after a really flat weekend. I felt like I was flaring over the weekend - fatigued, not sleeping at all well, lots of D, my gut mildly sore to the touch all over, and feeling close to bursting into tears (for no great reason) all weekend. Spent most of yesterday either outside under my favourite tree with a magazine (it was 32 degrees Celsius and sunny - I love autumn...), or on the couch watching Coast. There's nothing quite like BBC documentaries to pass the time when you're only half there!! I don't feel terribly energetic today, but I do feel like I am on the mend. My brain is in better shape and I feel a little more rested. Even had a semi-solid pooh - the first time in weeks - and didn't have to go back to bed to sleep off the pain afterwards. Hopefully I will get through the day.


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## dave13

Hi Vicky,my wife has a pretty good sense of humor.I can hear the 'she married you,didn't she?' retorts all the way from here. :smile: 

It's good you are doing the work you've been wanting to do.I hope the contract issues get resolved.Achieving career goals is a good thing to have happen.I'm sure it was no fun not getting your contract renewed with your previous employer.It enabled you to do what you are doing now,funny how things work out like that.

Sounds like your weekend had a mix of good and not so good.Sorry to hear about your rough stretch.CD likes to hit us when were down.A somewhat solid pooh and not having to sleep off the pain afterwards...that's a victory in my book!We take them anyway we can.I fall back on a few 'Britcoms' myself when I'm not feeling good.'Thin Blue Line' is a favorite.'People Like Us','Spaced','Little Britain' and others have helped me rehab from surgeries.I learned the hard way not to watch anything too funny too soon after having your abdomen cut open and than sutured and stapled closed.  I think I amused my wife more than the shows we watched.I'd laugh and grab my belly and laugh and grab my belly.It really hurt!She said I continued to watch them even though I new it hurt to laugh.So she had very little sympathy for me after the first time.What a women.I hope crohn brain clears for you.

I used that expression the other day at work.A co-worker said "what?".I tried to explain...they quickly got that glazed look in their eyes.I told them it's just another perk of CD,my new normal.

I hope you continue to be on the mend. Enjoy your Autumn,I'm waiting for spring! :ghug:


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## steph_irish

Wow Vicky 32c you are soooo lucky, we had our hottest day yesterday 18c and we thought that was great, then today......(Drumroll please) Overcast.....Dull.....threatening rain .story of U.K life at the moment. 
Reckon I'm flaring pretty bad since been back at work, so I hear you on the D front pretty damn miserable.
It's all relative, stress and CD is a vicious circle.
Your favourite tree sounds like a haven, and I'm glad your on the mend, sounds like R&R is key to our wellbeing :ghug:

And Dave I reckon from your stories you wife and yourself are great craic,
Honestly I kept chuckling at the thought of her almost scaring the S**t out of you. And yes it is fun when you can both make jokes about it. :hallo3:
It's like my partner thinking I could fix everything by just having my colon removed...then realising what he just said. :ybatty:

Anyway guys off for some sleep preparing for night shift :yrolleyes: that'll be what I look like in the morning
:ghug:


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## PenguinVic

Yep 32 on Sunday, and 34 today before a thunderstorm and cool change. We had a visitor from Scotland staying with us during Feb (our hottest month). We don't think too much about the weather until it gets much past 35. But we took him to the beach one day when it was 32 and he was melting....

Dave, your wife sounds like a gem. I can't tell you how important it has been to me since my diagnosis to have a spouse I can joke with about pooh.... It really helps to just blow off steam sometimes (no pun intended). And you'll notice I said BBC documentaries, not comedies. I would imagine British comedy would be agony post-surgery ;-) My favs are the Young Ones, Keeping Up Appearances, and Yes Minister. And where would we be without Monty Python.

I am feeling quite a bit better, although I am still quite fatigued and not sleeping properly (don't these two issues feed into each other??). I'm back into the swing of things with teaching, so hopefully things will just blow over now... Fingers crossed for smooth sailing/swimming :smile: :ghug:


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## dave13

I think crohnies consider pooh a bit more humorous than our mates.We have to.It's a big part of our life.There are enough times when it is not funny at all,so we have to chuckle when we can. 

I am a bit partial to BBC comedies.I think the last American t.v. I watched was the Daytona 500.Nothing like watching cars going around in a circle at 200mph.There's a metaphor for CD in there somewhere.

Yeah,funny how not sleeping and fatigue go hand in hand.You'd think our coworkers would catch on to that after the umteenth time of commenting how tired we look.Even on good days I have bags under my eyes.

I'll tell you guys another thing my wife said to me today in another post.I'm tired and have to keep retyping words right now.

I'm going to get some sleep,sleep,sleep so I can swim,swim,swim,tomorrow.

                                  :ghug:


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## PenguinVic

Several in our family have a range of GI issues, so pooh has become the butt of family jokes :hallo3: :lol2: Go pooh! 

It is really odd how fatigue and insomnia become a vicious cycle. You would think that if we're fatigued, we would sleep better... Wish I understood how it works. Perhaps car races are the answer? Watch them going around enough times and we're sure to fall asleep?? 

Hope you are sleeping soundly.


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## dave13

Hi Vicky

I never understood being tired all day and having trouble sleeping at night.Sleeping because of exhaustion is not sleep...it's passing out! Since I've stopped eating eating a couple hours before bed time I have slept better.I've cut down on my fiber as well.My painful frequent pooping in the morning has gotten better since doing this.Trying to figure out my new normal.Even if I feel good I still have bags under my eyes.I don't look like I've been punched anymore,at least,but they are still there.

  I went to the gym yesterday.I'm happy to say my muscles are pleasantly sore today.I was careful to not over do.I was worried about the suture acting up again,but it didn't.I'm assuming if it was hernia related,going to the gym would have aggravated it.It feels fine today. :dance:

Gotta go to work  :ghug:


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## PenguinVic

Glad to hear your gym session went so well, Dave! That's exciting. 

I elevated myself a bit last night, and slept better.... go figure..... :yrolleyes:

I found that it took a full year to really get my colour and spark back after the flare. So be patient with yourself - there are degrees of wellness and bit by bit you will get there.

And I have sadly pretty much waved goodbye to fibre in the form of salads over summer. It's so depressing.... Buy hey, I am well enough to get on with my life. Gotta be grateful for that.


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## dave13

I'm taking it slow,for sure.The slow and steady approach is the way to go.I'm kinda surprised I enjoy it.I know one reason is I feel like I'm being proactive and not waiting for something to happen.It's a tool to fight with.

I'm glad elevating helps you sleep.I had to prop myself up many a night.So far,I seem to be o.k. in that regard now.I don't want another resection,but it did take care of some chronic issues I had.That and losing 30+ pounds and drastically altering my diet and lifestyle.

We do have to be grateful for what we can do.It may be hard to do so at times.Just look from side to side at times and you will see Steph and myself swim,swim,swimming along with you. :ghug:


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## PenguinVic

It's so good to know we can all journey through this together! And I appreciate your support over the past few days. I think I am coming back out of a bad patch again, and my symptoms are starting to settle.

Glad to hear things are settling for you too, Dave. It does help to be proactive... I started walking the dogs again this morning - woohoo!! It's good to get out and get some fresh air and get the blood pumping.

On we swim...


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## dave13

Glad you're feeling better.I know support from you and Steph and all the crohnies helps me tremendously.Crohnies helping crohnies,right?

I believe we met over a cup of coffee,so to speak.Sadly,I have to say I have reduced my daily coffee to once or twice a week.It was overstimulating my bowels and the phantom poop urges were getting painful.I still raise my coffee mug defiantly...just not as frequently.

Snow storms have interrupted my gym visits.It's been a messy March so far.The snow is wet and heavy this time of year.The last storm dropped another foot!Than it rained...and snowed again. :ybatty:

I woke up the other night,guts uncomfortable and vomited.Same time of the morning as before my blockage.I'm confident it was because of eating too much and introducing a rich food I haven't been eating.I had been feeling good and just got careless.I'm pretty sure.I hope.I didn't get violently ill like I did when I had the blockage.

I'm back to my safe foods and feel better.I see my PCP tomorrow.Since I saw him last I have had a bowel resection,a hernia operation and diagnosed with CD.It should be an interesting chat.

                                             :ghug:


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## steph_irish

Happy St Patricks day xo
Hey guys I'm back in the land of the living so to speak, Hope all is well! :ghug:
I'm curious to know what you were eating Dave? :lol: Chinese maybe? 

(I love chinese) afraid to eat anything these days. Flare is pretty severe.
They've doubled my dose of Pentasa (So lucky I don't live in the U.S guys or I'd never afford my medication)
They've introduced suppositories and and enema :dance: lucky me.
There'll be no baby making this month. :ymad:

I've elevated myself to sleep also vic and it's working a treat, Bed wedge does the job.

I'm still unsure if its coincidental that I've flared just after returning to work.
Or was it lurking anyway like a sordid surprise :hallo3: waiting excitedly to announce its presence. God dam crohns :yfaint:

Preparing for night shift...What fun. I should be in the pub with double celebrations, st paddys day and the fact that the Irish won THE SIX NATIONS!!!!!!:dance:
Needless to say my UK buddies are not impressed in fact they're completely depressed.


----------



## Allison M

Hi! I'm new too. Just starting, and overwhelmed. I'm so happy to have found this forum. I never even knew much about this disease, and I am a retired RN. So, it's nice to have a place to discuss and ask questions. Thanks to all. And I posted that article on FB too. Very true.


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## PenguinVic

Happy St Patricks Day to you guys too. I didn't quite make it to the pub last night, but we did share a nice dry apple cider last night.... Forgive my ignorance, Steph, but what is the Six Nations??

I have had to cut back the coffee too, Dave. When I am desperate, I go for a decaf. It's better than nothing.... And I think I may be paying for a weekend of rich foods today - had my mother's 70th birthday party over the weekend, so we've been living on leftovers for a couple of days - roast meat and potatoes, cheesecake, pavlova... Back to dry bread for a few days I think, until the dreaded D settles down.

The weather in Maine sounds feral, Dave. How do you manage to get to work? I am pretty lucky with work - apart from 2 days per week when I have to be on campus for classes, I mostly work from home. I get up, walk the dogs (if I'm up to it), switch on the computer, have  breakfast and get into it. Didn't shower and get out of my pyjamas yesterday until after 1pm.


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## PenguinVic

Hi Alison!!

And welcome to the forum! It is pretty scary at first when you've got this diagnosis of a sucky, debilitating, chronic illness. But life does get a bit better once they get it under control. There's lots of info on this forum site - I found it really helpful to read other people's stories, as well as the overviews of the disease and various treatments. But don't get freaked out by other people's stories - they may not happen to you. We tend to get on here sometimes and rant because we're having a bad day, but not all days are bad.

Anyhow, welcome to the group - we're all in this swimming together!! (See earlier posts if that doesn't make sense, or else watch Finding Nemo!!) 

Cheers!

Vic


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## steph_irish

Hi Vic
The Six Nations is Rugby, It's huge over here and I'm a huge fan. So my son and I are the lunatics shouting at the T.V. it's all great fun.
It was such a close match that I was on the edge off my seat...Having CD and getting over excited is not the best idea  but what can I do.
It was great would have been even better if I could celebrate it true Irish style but alas, I must avoid alcohol right now.
That binge sounds lovely, I love cheesecake and pavlova and roast dinners, I'm frothing at the mouth writing this (not a good look) 

Hmmmm coffee! I miss that especially when I'm on the night shift I've tried decaff but it just doesn't taste right.

Hi Allison and welcome to the forum, as Vic said not all days are bad and the forum is a great place to as Dave said before meet over a coffee and have a chat so to speak.
I avoid the scary posts as reading them in the beginning terrified me, I read what I can relate to. I was also advised in the beginning to beware of Dr Google.
Each person has a bespoke disease with similarities and differences all rolled into one.
But when your having a bad day just reach out and we're here. Vent..laugh...cry or just chat, whatever you need to do. Just keep swimming :ghug:


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## dave13

Hi guys
   I had my yearly visit with my PCP today.It went well.He walks in the room and says the obligatory "you've lost some weight" remark.I must of had my 'Good one Doc,been awhile since I've heard that' expression.We both chuckled and the visit was a good one.It turns out he is quite knowledgeable about CD.

He was up to date on everything I've been through.He showed me all the 'doc to doc' communications he received to keep him updated.Most of the visit was spent talking about my approach to fighting CD.He feels I'm going about it in a good way with my diet,meds and exercise.He knew all about the different meds used for CD and why.We talked about my resection.

I was happy to hear him say that what works for me may not work for someone else.He understood how we are all different.My yearly visit turned into a CD question/answer session.He was very willing to talk with me and at no time did I feel rushed.I would say it was a productive visit.

Welcome Allison-the forum is a great place.I'm new to CD and understand being overwhelmed.I believe we all are overwhelmed at first.Take time and check out the forum.You will find you are definitely not alone in your fight.You will find you have a lot to offer too.

:ghug:


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## PenguinVic

Aah, ok rugby... They play that in other states of Australia, but not Victoria. We have our own code of football (Australian Rules). Although I don't really follow the footy much, I can understand being on the edge of your seat when it's a cliffhanger. We watched a grand final of the aussie rules at home a couple of years ago, and it was down to the last minute or two - so close. Placed a bet with my husband and our boys as to who would win. The ones whose team lost had to cook dinner and give the winners foot massages!! I won :lol2:

I'm trying a decaf coffee right now, out of sheer desperation. I have been drinking hot chocolate, but it is just too sweet and I just can't take any real caffeine hit right now. I miss having a healthy gut.... I always had a cast iron gut - could eat just about anything (except spicy food) and it wouldn't affect me. But now, I can't eat salads :'-(, I'm off coffee, and I am even finding tomato sauce challenging - the spice burns my throat:stinks:. I have survived my 2 days on campus teaching this week, through sheer will, minimal food intake and not a small amount of Gastrostop. I'm exhausted and looking forward to a rest this evening. Hoping this clears up soon.

I was just reading through my last post and noticed that the site has automatically hyperlinked the word potato to one of the wikis on the forum. Didn't know that potato was a bad idea for Crohn's. :yrolleyes: ...sigh... what am I going to eat now? Potato has been my staple when I'm feeling down. I wonder if instant mash is ok??

Hey Dave, glad to hear your appointment went well. Is a PCP like a general practitioner (family doctor)?? Anyhow, it's so good to find one that understands the disease and takes you seriously. I see my gastroenterologist every 3 months and I always take in a list of questions. I am sure I drive him nuts, but I don't leave until I have the answers I am seeking. And it sounds like it was great news all round - yay!!


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## dave13

I had a friend from Sydney and he showed us how to play footy.We beat the hell out of each other all summer!I'd be carted off the pitch these days.It was a lot of fun.Maines largest city is an hour away and they have rugby leagues.It's popular in an underground sort of way.Maine was settled by a lot of Irish and Scottish folk.We have curling rinks,rugby pitches and even gaelic football from time to time.

Are you sure potatoes are a trigger for you Vicky?I know it is a member of the nightshade family,like tomatoes,and is listed as a food to avoid.I have read many posts that crohnies have no problem with potatoes but do have a problem with tomatoes.I fit into this group.I can eat potatoes but a tomato sauce will cause me pain.I do eat a few cherry tomatoes in a salad and I seem to be fine.Cooked tomatoes are something I can't handle.Gotta love the trial and error method.Sick/Bad-Not Sick/Good I feel like a lab rat at times. :ghug:


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## steph_irish

Hey guys
Rugby is a real sport, I can't do football, although many players are very easy on the eye it's not enough to generate any interest on my part.:eek2: 

I just watched Australian rules on you tube I was intrigued. It's a fast game quite different from rugby but obviously requires a whole host of skills, I mean how fit are those guys.
I'm intrigued as to the whole underground thing re rugby dave, sounds mysterious :hallo3:

That's great Dave that you had a good visit, It's nice when your GP takes an interest in your illness. My guy is great, I would still be suffering badly if it wasn't for him. 
He cracked the whip so to speak :devil:

I don't have a problem with potato either vic and hadn't noticed the whole potatoes link scenario...Listen I'm Irish and I will not be put off potatoes.
I think what it means is the main thing is to avoid is the skin and we need to peel an extra 1.5mm once skin is removed.

So I'm guessing we have to peel our spuds(  ) twice.
bloody hell I hate peeling potatoes. So all is not lost :ghug: panic over 
It's the only thing I can manage sometimes. If it feels good for you then go for it. Avoid that processed mash I think that'd be worse for you. sacrilege ruining potatoes like that 
Hope you get some rest vic,  be careful not to over do things (although I know that's easier said than done) :ghug:


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## PenguinVic

I think 'beat the hell out of each other' is a really apt description of Aussie Rules!!

I don't know whether potatoes are actually a trigger for me. But I find it interesting that I have overdosed a bit on potatoes lately and have been feeling quite feral. So I'm going to monitor it closely. I will be really bummed if I can't have them, as they seemed to be the easiest thing to get down my throat when I was flaring, apart from custard (my throat/oesophagus are affected and I could barely swallow anything during my last flare). 

I hate peeling potatoes too, and I always buy the washed ones with skins on, so I don't have to peel them.... It's not fair....


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## dave13

Perhaps it is the quantity of potatoes you ate.I seemed to be fine with salads and other roughage like fresh fruit..I was experiencing very uncomfortable mornings and reduced my intake of roughage and seem to be doing a lot better.My point is maybe it is not the potatoes,but the amount of potatoes.

I still awake at 2:30-3am.Now I wake and have a BM and go back to bed.If I eat too much the day before I feel really uncomfortable and can't go back to bed.I'm trying to find the happy medium.

My wife and I use potatoes almost every day.It is def one of my go to foods.

Do you juice?It is a good way to have fruit and veg and is easy on the esophagus.

Today was a 'not go back to bed morning' so I'm a bit tired.Forgive me if I'm not making a lot of sense. Time for work:ybatty:


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## steph_irish

I like Aussie Rules! haha beat the crap out of each-other sounds like hurling, thats a tough sport also.

Your a spud monster Dave. Are you Irish? hahaha!
Your flare sounds nasty vic, affecting your throat like that. I limit my intake of food to avoid the pain during a flare but at least I can eat if I choose to.

I wish I could eat fruit, I used to love it, I've bought some melon so I'm hoping that will not affect me.
Strawberries are a killer, will never risk them again :yfaint:

Sending you both hugs :ghug: x


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## PenguinVic

Dave, sorry to hear the BMs are keeping you up at night.

I think you're right, though - it's probably just the quantity of potatoes. I have been trying to steer largely clear of them for the past couple of days, although we had fish and chips for dinner last night. Not feeling _too _bad today. I avoid large amounts of salad and fresh fruit these days - frustrating, but it does seem to cut down the frequency and severity of the D.

Steph, one of my sons came home from school the other day and said he'd been playing hurling. I must look into it....


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## dave13

We seem to opposites when it comes to certain foods,Vicky.Fried fish and potatoes would have me heaving in the wee hours for sure.Baked fish and potato would be o.k..I even eat mashed potato with very little butter and almond milk.Steamed,baked or sauteed veg is o.k. as well.I limit the amount.

I'm sure my CD being in a different spot than yours has a lot to do with what I can/can't eat.I'm still getting the hang of quantities and how late in the day I can eat.Avoiding alcohol definitely helps eliminate acid reflux like situations at night for me. 

I played hurley when we went to Ireland.It seems every Irish sport involves the potential of bodily harm to the competitors.My favorite sport is baseball,it can be exciting...really.Opening day in Australia today for MLB. That always ticks someone off,'opening day in a another country?!Who's f*&%ing idea was that?!!That fu%$#ng selig and obama no doubt.Just aint american'. You'll hear that on talk radio. LOL

ha,ha Steph.My wifes great grandmother came from county fermanagh,I'll have you know.It's amazing what you can do with a potato...culinary ways ,that is. We do eat them frequently.

     I hope you guys stop flaring and have a smooth stretch :ghug:


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## PenguinVic

Yeah, I seem to be fine most of the time with fried potatoes, and fried fish doesn't bother me - although there are other high-fat foods (e.g. Pizza Hut pizza) that have always set my crone a-rumbling. Large amounts of salad and spicy food are a no-no. I've been drinking a bit more alcohol of late (as in 2-3 evenings per week), as it has been warm weather here, and I like an ice cold cider on a hot night. Hadn't made a connection between alcohol and increased symptoms but perhaps it's another one to watch. Having said that, I almost never drink more than one standard drink in one sitting, so it's not exactly like I'm maxing out on booze.

As far as I am aware, I have no Irish ancestry - all English and Scottish. But I still love my potatoes and eat them most days. Can't live without them....

Just watched some hurling on YouTube. It's fascinating.... Fast-paced, and I could imagine those bat things could be nasty if you connected with them.

My mini-flare is starting to settle down, thank God. But my shoulder is worse than ever. I have just phoned and left a message for my physiotherapist to call me, as my next appointment isn't for about 2-3 weeks. But it's not looking good...

Wishing you smooth sailing. :ghug:


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## dave13

My diet would be considered quite boring by many people.I'm one of those people at times. I'm GF. No alcohol.No refined foods from the store ie candy bars,sodas,etc..I drink various herb teas and a lot of water.I haven't given up coffee completely,I'm gonna be stubborn.I eat lean meats in small portions.I eat fresh fruit and veg daily.I steam,saute or bake my veg.Soups,casseroles,etc.I bake or grill the meat.I prepare fish the same way.I use fruit in yogurt and for snacks.I juice fruit and veg too.I use almond milk for cereal.Yogurt is my main dairy I eat.I have begun to add small amounts of cheese to my diet.I love cheese and haven't had any in four months.Our chickens are laying and I eat eggs.Mostly poached on dry GF oat toast for breakfast..Yum! I do enjoy it.

We have local organic farms we get our meats and dairy from.Same with veg..Working in a health food store helps.I get to meet a lot of the farmers and network.I also get a discount at the store.It helps with going organic on food choices.$$$ We cook as much of our meals as we can.It can be time consuming to eat well.I do have the occasional GF nukeable burrito at work when I feel lazy,or GF mac and cheese.

We have some excellent brew pubs in my area.A nice pint after a leisurely motorcycle ride...I'm only human after all.I may have to revisit my omission of the occasional pint once the weather warms.Many of the pubs have very good food as well.Selections even I can eat.We are close to the coast so there is always a good fish selection.

I'll stop my food ramble now...hope your shoulder feels better and flares stay away for awhile  :ghug:


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## steph_irish

I'm coming to your house for dinner dave :lol: let your wife know some mad irish woman just might show up to try out your cuisine.
wish your shoulder would clear up vic, flare equals extra manifestations of crohns, my back and ribs are messed up  bah hum bug as they say

Do you like moto gp dave, nothing nicer than a cool pint after a motorcycle ride soon it'll be our kit car can't wait 
x


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## dave13

Hi guys

  The pentasa arrived yesterday morning.I take 500mg twice a day.Here's hoping it works for me!

Your welcome for dinner anytime Steph.I already dine with one mad Irish woman as it is.I find you Irish ladies keep things interesting. :smile: I like moto gp and all bike racing. If you need a pit crew for the hill climbs,let me know.(as long as their is a loo close by)

I hope your shoulder feels better Vicky.We can hope for a day when CD is leaving us alone and the rest of our body is at peace too.They must happen,right? There must be an urban myth out there of such an occurrence.

The wife is still snoozing and the dogs are anxious to go out.I'm going to take them down to the lake.Talk with you later :ghug:


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## PenguinVic

Yay!!! Fingers crossed the Pentasa does the trick Dave!! :ylol2:

I've just come back from walking my dogs. It's a beautiful autumn morning here - about 15 degress celcius, sunny and no wind. Just gorgeous.

I think I might come to dinner too, by the sound of it. I'm not Irish though - just a crazy Aussie.... You put way more effort into your food than we do. We are so ridiculously busy, that we tend to go for quick meals (although not usually processed) - curries (mild for me), stir fries, steak and steamed veges... I simply can't give up my coffee unless I am flaring so bad it makes me nauseous. But I have been drinking a lot of decaf the last few days.

I have just looked at a map to see where Maine is - wow it's so far north!! No wonder it is so cold... I bet it must be beautiful though.

I have tried out potato chips (crisps) again over the weekend and I seem to be fine. I think I was just flaring due to that stressful week at work. I am coming good again, except for the shoulder. I am still waiting for my physio to call me, but I am guessing I will be making an appointment for the injection before long....


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## PenguinVic

I notice the site has automatically linked the work map in my post above to another page. This is not the sort of map I meant..... :-/


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## dave13

I do hope pentasa does the trick,Vicky.I guess time will tell.Everything with CD seems to be a trial and error,hurry up and wait.

Autumn around here is beautiful.We have warm days and cool nights.The foliage is so vibrant.It is a good time to take a boat out on a lake or river,nice perspective for checking out the color.I'd take that weather now.Today is sunny,but another single digit temp. day with windchill in the negatives. :ybatty:

You are more than welcome for dinner,Vicky! I warned my wife there may be crazy Aussie and Irish ladies knocking at the door ...The effort it takes to eat a simple and healthy meal is a frequent subject of conversation.I enjoy cooking and baking,so that helps.I try to approach my diet as a tool I can use against CD...plus I just like good food.

Speaking of tools to fight CD with...I'm trying to motivate myself to go to the gym before work. :rof: No really...

It's good to hear you are doing better with the flaring.I hope the injections help your shoulder.Did you ever see the movie "The Long Kiss Goodnight"? There is a line "Life is pain" a mother says to her young daughter.Nice,huh?..the point is..if you feel pain,you are still alive.If you are still alive,you can still fight.My wife and I use this on each other at times,with a smile on the face of the one who says it.This usually gets a 'f%&k you' as a response from the one presently in pain.A good healthy relationship :ycool: 

:ghug:


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## steph_irish

Hi all, lovin that F**k you response, I've used that a few times 
Hope you guys are well, was having problems with computer so couldn't post.
I followed that link Vic and had to laugh  'Mycobacterium Avium Subspecies Paratuberculosis
jesus thats a mouth full 
Glad you got your pentasa Dave, hope it goes ok, I finally had my meeting with new GI consultant.
It went well, he's kind and patient and I never felt rushed, questions were answered in my own time. Unfortunately I'm on the dreaded prednisolone  not very happy with that.


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## jjohns23

Hello to all!  I am new to this forum and unsure even if this message will post properly.  First, I want to thank Vic for the CNN link, that message is so moving I will certainly share it with those I love.  I am grandmother to a 12year old girl who was diagnosed in 2010 with Crohns Disease.  Needless to say, I have been reading on this site for several days and I am learning so much.  My only hope is that I can find ways to help her get through each day.  Her main problems come with having bowel movements.  It is so bad that she does everything in her power to avoid going.  From the stinging, burning, and pain involved, she has not had a normal day in a very long time.  She has lived with me since birth.  I will put all of the information you have provided into good use and hopefully we will see some improvements over time.

Jo


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## PenguinVic

Hi Jo.

Welcome to the forum! Glad the CNN article was encouraging. I found it immensely so when I was at my lowest. It gave me the strength to keep putting one foot in front of the other, in the hopes that someday I would be ok again. And I am.

My heart goes out to your granddaughter. It seems to be a much worse disease when you contract it at a young age. I get some stinging around my rear on bad days, and my dr has suggested I try a haemorrhoid cream. But if the pain is from cramping, that's a little different. You could try peppermint tea, as it's an anti-spasmodic. Can't offer much more advice... But keep searching the site. There's bound to be someone around here who does have useful advice for you.

Anyhow, welcome to the fold. Keep swimming (watch Finding Nemo if you don't understand!) and know that you guys are not alone.

Sending you both big hugs :ghug::ghug:


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## PenguinVic

I like the F*(& you response too. Never fails to get a laugh!!

So did you get to the gym Dave?? Sounds like a party is on at your place!!


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## dave13

Welcome Jo,it must be rough watching your granddaughter go through this.I would def check out the Parents of Kids with IBD support groups. It is great you are looking for information.We have to stay knowledgeable on what we are going through.

Is her GI kept up to date on her condition? Her PCP? 

With your help she can still be a kid and enjoy life.Hopefully she can learn to face the tough times...knowing they won't always be that way may help.There will be better days.

You need to remember to take care of yourself as well.You are going through this too.The stress can take its toll on a caregiver as well as the crohnie.It is so emotional.

Check out 'The Parents Of Kids With IBD' support group.Remember you are not alone in this fight. :ghug:


                                     Dave


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## electrocoin

Hello everyone, Robert Stahck from Tampa, loving this site. I already got a warm welcome.


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## steph_irish

Hi Jo and Robert
Welcome to the site, great support here.
Sorry to hear about your granddaughter Jo, It honestly breaks my heart when I hear of children suffering with this. I wish you all the best :ghug:
steph


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## steph_irish

I love this new smiley it reiterates the F**k y** scenario :voodoo:
Gosh I'm easily amused (But then you guys know that)


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## PenguinVic

Steph, I love that new smiley!! Wish we could do that to our inner crone... Life is pretty good when we are easily amused ;-)

Hi Robert and welcome! This site is a great place to come for lots of heartfelt moral support and helpful advice. Keep swimming!!


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## dave13

I did go to the gym before work the other day.I went yesterday as well.

I went to the gym yesterday,my day off,and had supper ready for my wife when she came home from work.:kiss: ....I think I earned a few points.

The last week has been wonderfully uneventful as far as CD goes.Except for the other day when I had coffee...it was worth it.Maybe the pentasa is helping me.

Going to the gym helps.It's been hard to get a routine down with this crappy weather :angry-banghead: The gym is .25 mile away from where I work,wich is convenient.

Today we have 50+mph gusts...no snow...we just got our power back.Winter sucks



:ghug:


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## Allison M

Hi PenguinVic, dave13, and steph_irish! You can't imagine what your kind words mean to me! I was sick for the last 4 years...had 1/2 my stomach removed, pan colitis, my gall bladder removed, (all surgery d/t "screaming" abdominal pain), then I had a rectal prolapse, (didn't see THAT coming, lol), and after the repair, they continued to tell me..."you will be normal"! Crohn's was never on the radar. But after a year of flaring, (didn't know the word at the time), and losing 70 pounds, I finally asked..."I don't have Crohn's, do I?", to which I got a big YES! I am so sorry that our friendship has come out of our disease, but after 4 years of being treated like a "faker", there is some relief just knowing, and your stories and reassurances that I am not alone have made a huge difference. I know I am going to have to find a new doctor, but I find myself clinging to the colo-rectal surgeon because he at least believed me! (I guess when someone has there intestines protruding from their body, it's pretty hard NOT to, haha!) I will be on here a lot and your experience is so valuable to me, so thank you X's 1,000,000! I hope you ALL have a lovely, distress free day! Allison


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## jjohns23

Hi PenguinVic, Dave13, Steph_irish,  and Electrocoin!  Thanks to you all for the kind words.  Vic, I will give the peppermint tea a try.


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## PenguinVic

Well done, Dave, for getting to the gym in crappy weather!! And I bet your wife must have been rapt to come home to dinner!! Glad to hear the Pentasa is working. You are sounding so much brighter and that's really great to hear.

Wow Allison. You have quite a story to tell. So sorry to hear it's been such a long time coming. I suspect that I had Crohn's for about 20 years before they finally diagnosed it 18 months ago, although I guess we will never really know. But I wasn't having such severe symptoms as you. You would think Crohn's just _might_ cross their minds when everything is going so haywire??? D'oh! Glad you finally got an answer, even if it wasn't one you wanted to hear. I was really distressed when I was told I had Crohn's but at the same time I was relieved, as I thought I was losing my mind with all the different symptoms I had. So are you starting to get any relief now you have a firm diagnosis? Are they putting you on some decent meds to treat the underlying inflammation?

:ghug: to all.


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## PenguinVic

Hi Jo.

Let's know how you get on with the peppermint tea!


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## Allison M

Hey PenguinVic! Yes, they started me on massive prednisone in December '13, then 6MP and asulfasine in January. I think I feel a little better, but when you feel like you have the flu most days, it's not a great life. I end up spending too much time sitting or laying, hoping for the meds to kick in or even a miracle, haha!  I never thought of Crohn's! Not one doctor mentioned it. I kept getting told, before every operation, "you will be normal", but after the rectum removal, I got a stricture and the diarrhea, jello poops, etc. I kept googling symptoms, and one day I just asked. It WAS a relief! Not GOOd news! But after being treated like I was druggie, I did feel some vindication. I was a nurse too, but I did L&D. Thank you for your kind words of empathy. I wish more people understood, but this forum has made me feel, well NOT alone. And I am grateful!


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## dave13

Welcome Allison...you've been through quite a bit.I'm sure being diagnosed with CD is a mixed blessing for you.Nice to know you are not going crazy...not so nice hearing the diagnosis.I really think all us crohnies had CD long before we were diagnosed.

If you read the thread you know my introduction to CD was by emergency surgery.As awful and terrifying as that was,I feel I was saved from years of wondering what was going on...If you know what I mean.I went through several months of pain and confusion,rather than enduring the route you and so many others had to travel.I hope you do better now you know...the forum is a great place.Crohnies helping crohnies.:ghug:

                                      Dave


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## dave13

Hi Vicky...I'm cautiously optimistic.I'm nervous to embrace feeling better because I'm waiting for the hammer to fall...who's paranoid? I'm even more vigilant now I'm feeling better.Feeling better ,these last couple of weeks,makes me realize how long I've felt like something that should have been flushed.

I am in remission and the pentasa seems to be helping and I should just go with it.My surgeries are healing well and I am able to be active.Is it weird to to feel guilty for feeling good? I'm gonna give myself a headache with this rambling...I'll talk with you later. :hug:

swim,swim,swim...


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## Allison M

Thanks so much Dave! I hope you have a great day. Y'all's support has meant the world to me.


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## PenguinVic

Hey Allison!
It's so good to hear you're on the mend.

While my journey has been different to yours, I do understand the treadmill you can get onto with doctors. They don't believe anything is wrong with you until they can see it. I started to feel like a total hypochondriac.

You may feel flu-ey for quite some time until the inflammation resolves itself and your body recovers - it's been through quite a few big shocks. But I don't need to tell you that, if you're a nurse!! 

Listen to your body and rest if you need to. Don't feel guilty or slack or anything else. You will get better with time. And they may need to alter your medications if the current cocktail doesn't bring on remission.

Keep swimming :ghug:


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## PenguinVic

Hi Dave.

Yeah, I felt weird when I finally started to feel well. I guess even if you fight and don't let the disease define you, you do end up expending heaps of energy on just trying to get well. When you finally _are well, there's like a big hole in your existence.

And I guess I found too that I needed time to heal emotionally from the shock of the diagnosis, the initial flare and all the aftermath. So keep exercising, eating well and adjusting to your new, well life!

Swim, swim!!_


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## steph_irish

Allison M said:


> Hi PenguinVic, dave13, and steph_irish! You can't imagine what your kind words mean to me! I was sick for the last 4 years...had 1/2 my stomach removed, pan colitis, my gall bladder removed, (all surgery d/t "screaming" abdominal pain), then I had a rectal prolapse, (didn't see THAT coming, lol), and after the repair, they continued to tell me..."you will be normal"! Crohn's was never on the radar. But after a year of flaring, (didn't know the word at the time), and losing 70 pounds, I finally asked..."I don't have Crohn's, do I?", to which I got a big YES! I am so sorry that our friendship has come out of our disease, but after 4 years of being treated like a "faker", there is some relief just knowing, and your stories and reassurances that I am not alone have made a huge difference. I know I am going to have to find a new doctor, but I find myself clinging to the colo-rectal surgeon because he at least believed me! (I guess when someone has there intestines protruding from their body, it's pretty hard NOT to, haha!) I will be on here a lot and your experience is so valuable to me, so thank you X's 1,000,000! I hope you ALL have a lovely, distress free day! Allison


Hi Alison 
Sorry bout my late reply, having computer issues and doing my head in.
Sorted now.....I think.
It's great to have people that understand what we're going through. I believe it allows us to be normal around normal people, as we have all the support and empathy we need from other crohnies. Hope your keeping well
sending you huge hugs :ghug:


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## steph_irish

Hi Dave and vic
Hope you guys are keeping well, Have you started injections yet vic?
I'm enjoying the spring like weather at the moment.
With the exception of that smog that affected us for a few days. Lucky I don't suffer with asthma.

Working hard so nothing new there. Coming into airports busy time so after a 12 hr shift I'm in zombie mode.
I'm am enjoying a sense of normality, now close colleagues making light hearted jokes re crohns. it's good at first they were awkward, now they're taking the mick, so it's funny :thumleft:

Planning a holiday which I'm looking forward too. Still not taking steroid. Flaring but not so severe it's manageable. Increased my iron intake as I was anemic again. doing the trick.
 :ghug:


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## PenguinVic

Hi all.

Yep, I'm doing pretty well thanks Steph. I will have my injection next Monday. I have heard from a couple of friends who have had them that they're not too painful, and they do actually work. So while I am not looking forward to the procedure, I am looking forward to some relief soon.

I am enjoying some lovely autumn weather here. If you ever come to Melbourne, March/April is the best time of year. It's still reasonably warm (top temperatures of 20-25 Celsius), but not crazily over the top hot like summer can be.

Glad to hear you're doing better, Steph. So why haven't they started you on pred yet? It's not terribly pleasant, but gee it works.... A holiday sounds wonderful. Where are you headed?

So Dave, Allison - how are you guys tracking at present? Is life regaining some equilibrium?


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## Allison M

Well, I had several pretty good days and I guess it's a flare today, but i think my acceptance is increasing, so that is good. How lovely autumn in Austrailia sounds! It's spring in Texas. I love to garden, so hope is in the air! Hope is a good medicine! Thanks for asking, and good wishes!


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## dave13

Hi Folks

I seem to be doing well,Vicky.The Pentasa seems to make me more gassy than usual.I don't mind when I am around my co-workers.I like to share with them!:kiss:It's a little embarrassing around customers.I have been fortunate to not have it happen when I'm talking with someone...but it has been close.They don't stink,but go on in that classic put,put,put motor boat style for a few seconds or longer.

I have a co-worker who is lactose intolerant.Like all you women...she can't resist chocolate.(yes,I said all you women)She really stinks :stinks: the silent but deadly farts that just linger.She'll tell customers it was another girl that we work with. :ylol2: She'll warn me if she's been eating chocolate.I've learned to take notice if she just walks away...and I do the same.She'll look at me with a smirk on her face.The two of us together are quite a pair!

I'll spare you anymore gas related stories...

I hope the Pentasa continues to help me and I stay in remission.Knowing it could all go down the crapper in a blink of an eye makes me appreciate my new normal.

I got,what we hope,is the last bill concerning my surgeries. :eek2: Hopefully I won't have anymore surgeries for quite awhile...or not at all would be nice.

I could go on a rant about Health Care in America...but I won't.I won't let the bastards get me down..today.

Dave :ghug:


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## steph_irish

Hi Allison, Vic and Dave
You do bring a smile to my face re your jokes Dave, I should have read this first. 
The reason I didn't take steroid vic is that I thought I might be pregnant, but alas that is not the case so I have started them today. I'll  be thinking bout you next Monday vic. I hope you find some relief. I'm hoping steroids might help pain in back and ribs when I lie down. 
Fingers crossed they wont be too harsh.
Got news my aunt was diagnosed with liver cancer today, last month my other aunt was diagnosed with breast cancer.
Seems non stop at the moment with bad news. need a hug :ghug:

I'm glad your doing better allison wow so many acquaintences

Boston, Australia and now Texas how cool is that?:hug:
gotta love those smilies


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## PenguinVic

It's great to hear everyone is on the mend. And we really are building a diverse little group of Crohnies from around the world!

Dave so rapt to hear you're in remission. Yes, savour it. We never know what's round the corner.... I find Mezavant (which I think is Pentasa) really makes me bloated and windy, particularly of an evening. It does make eating out hard. But the rest of my family have various GI issues. So it does make for some interesting and entertaining evenings around the tv, and some pretty challenging car trips!!! And I have had to struggle in front of my classes some days :eek2:

Allison - you sound much brighter! That's great to hear.

Steph, that sucks that there's so much serious illness in your family at present. It does seem to come in waves. Sending you biiiig hugs :ghug::ghug::hug:  And fingers crossed the steroids give you some real relief!!


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## PenguinVic

Shoulder injection tomorrow. Yay!! How weird does that sound?? Fingers crossed I start to get some function back in my shoulder without the sharp pains.

Hope everyone else is doing swimmingly.


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## steph_irish

Hi all cheers for the support.
I'm wondering how you got on today Vic. And dave I hope you stay in remission. How great if Pentasa gives you the boost you need to make that happen.

Re family illnesses It's just scary. I've decided to have genetic testing done. I want to know if it's ever going to affect me. Our family don't follow any rules when it comes to cancer.
We have experienced every type now. Hope you're all well sending huge hugs :ghug:

Just noticed genetic testing link this isn't what I mean, guess i already know I have crohns


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## PenguinVic

Injection went fine thanks. Don't know what Iwas so worried about.... Just a tiny prick but no pain. Now I'm just waiting for it to kick in - it takes about  4-5 days to start working.

Can't blame you Steph for wanting genetic testing. That's a pretty scary family history. There's lots of bowel cancer in my family, and I wonder if my Crohn's isn't related to a long family history of undiagnosed and untreated bowel problems?? At least I'm getting treatment now.

Hope the meds are keeping everyone well. The wonders of modern medicine!!! :ghug:


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## dave13

Hi guys

I hope everyone had a good Easter.Spring is a time of hope and renewal.

Vicki-I hope your shots are working for you by now.Today is a damp and overcast day.I could not resist the call of the coffee!I have a pot brewing while I type this..m,m,m,m..coffee aroma  I'm going for emotional comfort this morn.

I hope the shoulder is doing better...hard to swim,swim,swim with a busted flipper.You just go in circles.

I have the house to myself this morning.I'm decompressing after spending yesterday with my family.I was able to eat(mostly)what everyone else ate.Ham,veg,etc.I felt kinda normal!The pentasa has really helped me gain weight so I looked a lot different than the last time they saw me at Christmas.I'm ten pounds heavier and have filled out some...not so bony,if you know what I mean.

Just thought I'd check in...:ghug:


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## PenguinVic

Hi all.

We had a lovely Easter here, although it's not spring!! The weather was nonetheless mostly charming. Spent lots of time eating hot cross buns (I bought far too many!) and chocolate, and catching up with family and friends. We're taking some extra time off this week and making a whole week of things. Off to the movies today!

Yay for drugs like Pentasa!! Eating normal is so novel, isn't it??!!

Unfortunately the shoulder injection doesn't appear to have worked. It's as bad as ever. So I am seeing my GP on Monday to find out the next steps. This is driving me totally nuts - can't sleep well, have trouble driving, and even simple things like getting dressed and hanging washing on the line are painful. I want to get this flipper fixed so I can get on with swimming. :ghug:

Cheers!
Vic


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## steph_irish

Hi all 
sorry to hear your not getting relief vic that sucks 
Pentasa is definitely a life line for sure. 
And Dave glad to hear your gaining weight, funnily enough My weight has never been an issue, if anything I gained a little went from size 8 to 10.

Steroids for me have finally kicked in and I'm loving them. 
Quick note to send hugs talk soon :ghug:


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## ronroush7

We had a quite Easter here.  I got a good report about my surgery but I need the doctors to get me on another biologic.

 2


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## PenguinVic

Yay for steroids and Pentasa!! (And in my case, Humira!) I found the steroids halted my rapid weight loss, but didn't help me put it on again. But given my love affair with food, weight gain has not been a problem, now that my entire GI tract isn't ulcerated and inflamed.

I've just seen my GP and got a referral to an orthopaedic surgeon for the shoulder. I'm a bit bummed (another specialist to juggle) but oh well.... :frown:

I took a week off work over Easter. We celebrate Anzac Day here on April 25, so last week we only had 2 working days. Got out and did some fun stuff, but I am back into it this morning - 250 papers to mark in the next week or so.... :eek2:

Hi RonRoush7! Glad you got a good report. Hope you get onto a biologic soon. I have found Humira to be magic!

:ghug::ghug:


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## dave13

Hi 

I'm thinking of visiting a friend.This weekend starts bike week in Laconia,New Hampshire.It's a week long event with bands,food,group rides,demos,etc.My friend lives right in town and I would have a place to stay.It is only an hour or so away and it is a nice ride through the White Mts. of Maine and New Hampshire.

I'm not one to ride in groups,but it is kinda fun this one time a year.You start out to Laconia on your own,than meet a couple more riders.Next thing you know,other bikes are behind you and you got a big group rolling down the road.

I haven't seen this guy since before my resection and this lovely CD trip started.We use to be beer drinking buddies and went to college together.I've known him since I was 17.

I don't drink anymore and I follow the SCD.My world is completely different now.He really wants me to visit.I could use a couple days away for sanity sake.

I was thinking I could ride over Monday morning and play it by ear.His brother owns a popular restaurant in town and said he'll comp my meals.I checked out the menu on line.Not the most SCD friendly place,but there are choices I could eat.I can bring some food with me.

If I don't drink coffee before I head out I think I would be fine riding that distance.One thing about living in a rural state like Maine,there is a good chance there will be woods you can run into if the need arises.Just don't think about ticks,mosquitoes and black flies when you do it.:eek2: 

It all depends on the weather.The forecast is for good weather,we'll see if it holds true.I suppose I could head towards Laconia and just go to Vermont if I change my mind.That's a nice ride too.

Bikers come in from Canada and all over the States.I could meet some chronies,you never know.I'll listen for poop humor as I walk around. oo:

                                Dave


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## PenguinVic

This sounds amazing!! You should go for it! But take plenty of gastrostop with you :ycool:


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