Crohn's Disease Forum » Your Story » Dwy's Story


02-09-2012, 04:08 AM   #1
Dwy
Member
 
Join Date: Feb 2012
Location: Brisbane, Queensland, Australia
Dwy's Story

Hey everyone,

First off my name isn't Dwy its just an alias :P

Bit of a long time lurker(probably about 3 months) and I finally decided I might make an account and tell people about what I have been through over the last year or so. I'm not new to posting things on the internet, I don't mind posting some personal information. This will be a bit long but I think I need to vent :P

It all started in december 2010. I had been a long time coffee fan, not really probably for about a year, going through numerous coffee cards(those cards you get stamped for free coffee). I even own my own espresso machine and grinder which I bought for my mum as a present for her (). It was in that december that I started to feel sick.

I would go to the toilet probably 5 times a day with diarrhea and terrible stomach pain. It slowly got worse that month and I also had terrible mouth ulcers most of the time all around my tongue which made eating the worst chore I ever endured. I put up with being sick for about a month and then at the start of january 2011 I finally went to the doctors about it. He didn't think much of it until I told him how long it had been going on for which prompted a blood test and some mouth cream for the ulcers(tasted terrible by the way). I never did go for that blood test.. I was actually getting a bit better but I had stopped drinking coffee and mostly shut up about it so my mum would stop worrying.

From January to march my long distance relationship with my new girlfriend had been going strong but I was getting progressively sicker. I was trying to study for exams(I'm a uni student) but I was always having to excuse myself from my friends to pop off to the toilet for what was always a tiny amount of a bowel movement but if I didn't go it gave me the worst pain in the world. The worst moments then at the time was when I had my morning coffee. Not to disturb some of you but I would actually take the coffee into the toilet with me and kept drinking it even though it caused me to instantly bolt to the toilet in the first place.. kids are dumb hey haha.

In won't bore those that got this far with the boring parts anymore and I'll move onto June. I was sitting my final exams for the semester and I went back and saw my GP(in australia this is a general practitioner you just see for anything) and when I told him I had been putting up with terrible bowel movements for 6 months he was astonished! He had me go for a blood test(which turned out to be the same one I was meant to have in January) and it revealed an incredibly high CRP value for inflamation and he started to talk to me about this inflammatory bowel disease thing I had never heard of...

This brings us to the end of June. I had finished my exams(I really soldiered through them, I excused myself to the toilet countless times during 3 hour exams) and was referred to a gastrologist who wanted me to have a colonoscopy. This revealed minor Crohn's disease and I was put onto prednisolone and nexium and felt...

..amazing....

Honestly there's no way to describe it to other people is it? I was sick for so long and suddenly I felt incredible, like all the bad things had gone away. I spent 2 weeks on 40mg of pred and them was put onto azathioprine by the docs recommendation. Life was starting to get a little better.

I have been up on pred, then down too fast that I was terribly sick again. I was though to have had celulitis at the end of my second semester last year(around the start of november) only to find it was actually erothyma nodosum. Apparently the treatment for this is steroids and I was already on steroids so they ruled it out. This was a 8 day hospital stay when all I needed was a large does of pred. I spent around a week on 70mg of prednisolone and I was fine again! Huzzah!.

I have been having regular blood tests, been slowly coming off pred again, by about 2.5mg every 2-3 weeks hoping to get off it soon but this brings us to the present day.

I am currently set to see a specialist who apparently spent a great deal of time at the oxford university studying crohns to get a second opinion on my medication. I have been on azathioprine for about 7 months now yet I am still having trouble coming off pred. So naturally now my parents are questioning everything. My mum is upset that I am sick and can't do anything and my dad is violent and unaproachable and he is simply mad that the doctors bills keep rolling in but I don't "seem" any better. I have been told by both my parents that they don't believe I even have crohns even though I still have the pictures of my bowel to prove it. This is kind of what brought on my post today. I am kind of at an ends. I have reached a point where now my parents don't think I actually have the disease, and my girlfriend of now 13 months doesn't really want to listen to me talk about going to the toilet etc. My dad simply said stop taking the drugs if you feel better because theres no point if I don't feel sick.

I don't want to leave the story on a low note so I'll try and be positive in this lat paragraph ;P. All in all it has been quite a ride. I'm good friends with the local hospital now and I've come to accept what is wrong with me. I have done a lot of research, read about different drugs and now I guess I'm just looking for a listening ear and this seems like the kind of place for it. I don't avoid too many things. Caffeine, juice, and milk mostly(i drink zymil) but most other stuff I still eat.

I might just stop there then, if anyone has anymore specific questions I don't really mind answering so feel free. Nothing too specific though.

I hope I put everything in haha.

Dwy
02-09-2012, 04:52 AM   #2
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Hey there and a big warm welcome :-) Your post caught my eye cos coffee was the love of my life too but I had to give it up. Still can't drink it even though I've just gone into remission. Also, big chocolate and cake lover but they don't do me no good neither.
Sorry to hear about the family and girlfriend. My own son said to me he'd thought I might be 'putting it on' until I had to go into hospital. They just don't get the implications of a chronic disease, and to be honest neither did I before I got sick.
So questions.... Well, have they talked to you about Humira or Remicade as the Aza doesn't seem to be working?
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
02-09-2012, 04:58 AM   #3
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Have you considered asking your mother to come to specialist appontment?
02-09-2012, 05:03 AM   #4
Dwy
Member
 
Join Date: Feb 2012
Location: Brisbane, Queensland, Australia
Hey there and a big warm welcome :-) Your post caught my eye cos coffee was the love of my life too but I had to give it up. Still can't drink it even though I've just gone into remission. Also, big chocolate and cake lover but they don't do me no good neither.
Sorry to hear about the family and girlfriend. My own son said to me he'd thought I might be 'putting it on' until I had to go into hospital. They just don't get the implications of a chronic disease, and to be honest neither did I before I got sick.
So questions.... Well, have they talked to you about Humira or Remicade as the Aza doesn't seem to be working?
@grumbletum thanks for replying
Oh I do love coffee still.. a decaf with soy milk please! .

So I'll add a bit more which I seemed to have skipped. I am on my second GI at the moment. The first one I was seeing had me on pred and nexium and then straight onto azathioprine. She didn't really talk to me about alternatives. Just said lots of bad and scary things and said the good outweights the bad and I kind of just went with it. I plan to bring up other medications with the different specialist I am seeing next week. This specialist is separate from the GI's I have been seeing. The original one had me dropping pred at 5mg a week and I had a terrible flare. My current GI has been dropping me down at 2.5mg each time I see him so I can enjoy my holidays. I'm just happy to be well, I don't read too much into my dosages.

These other sub forums do offer a lot of info about these other drugs which I've only really started reading. I tried to make this crohns thing a "take a few pills a day and forget about it" thing but it is hard!

@catherine thanks for replying! she does sit in on 90% of my visits but it just frustrates her that after being on aza for a long time that the doctors decides to get me to see a different specialist because he just isn't too sure, which coming from a doctor is worrying I guess.
02-09-2012, 05:40 AM   #5
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
Maybe your mother is scared. My daughter is 16 and got dx 10 day ago. It s really scary to see your child in pain losing weigh. Taking medicines with all these side effects.
02-09-2012, 07:29 AM   #6
Angrybird
Moderator
 
Angrybird's Avatar
 
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Hello Dwy and welcome to the forum. Perhaps Catherine is right about your mum being scared and her way to deal with it is to pretend it's not there anymore. I had problems with some members of my family because unless you are at the stage of looking incredibly skinny and malnourished you don't 'look' ill as such anymore, of course it is all still doing the nasty inside where they can't see. Medications are soo tricky and it can be such a drawn out process to find out the right one, though, you are still at the stage where there a fair few still to try. With regards to the Pred can I ask whether you have been given a calcium supplement to take with this? If not PLEASE ask your doc about this asap, it is very important that you have something to take to protect your bones whilst on this especially as you have now been on it a fair while. I have also had issues getting off it in the past but just slowing down the dosage dicreases eventully got me there I do hope things improve for you soon...keep us updated.
__________________
Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
02-11-2012, 01:07 AM   #7
Dwy
Member
 
Join Date: Feb 2012
Location: Brisbane, Queensland, Australia
So many warm replies

Hi Angrybird,
I agree that does seem to be the problem. Most days she will ask how I am and I'll say fine, but I think it's for them to understand what fine means to most of us. Fine is a little bit of pain but nothing too unbearable for me, if it's a constant pain all day that will bring me to saying not fine instead. My dad wants me to just stop taking the pills and that it's just diet that brought all this on and I just need to eat better, I kind of reached a point where I keep them in my room for fear of them not being there in the kitchen when I wake up

It is also that drawn out process that is frustrating them. $100 a pop for seeing the GI to have your dose lowered slightly is starting to get on their nerves and I can see why. I think medicare gives back about half of that but it's still expensive. They seem to think I'm being given the run around and the docs don't really know what they're doing since it's always up and down with the dosages to find the right one.

I am taking a calcium and vitamin d thing everyday, wasn't taking them at first (didn't like the taste :P) and my bone density dropped as revealed in a scan and now I make sure to take them everyday and I think it's all fine now. I don't think 7 months is a fair while, I've asked and they reckon a fair while would start to verge on 1-2 years and I'm feeling much better on my current dose(12.5mg) than I was the first time I came down to it so hopefully I'll be off it this time round etc.

It's nice of you to say keep us updated, makes me feel all warm and fuzzy :P
02-11-2012, 10:36 AM   #8
Angrybird
Moderator
 
Angrybird's Avatar
 
Join Date: Nov 2011
Location: Cambridge, United Kingdom

My Support Groups:
Well hun we need to know you are 'fine' I use 'fine' nearly as much as 'alright' and 'ok', my hubby knows that these mean I could be better but could be worse.

Glad you are now taking your calcium everyday. Out of interest what dose of Aza are you actually on? If there is the risk of your meds going walkies then definelty keep them out of sight, it can be VERY bad if the pred is all of sudden stopped dead, after all you know what happens if you go down too mg's too quickly. It is a shame though that this is a worry for you.
02-11-2012, 10:41 PM   #9
Catherine
Moderator
 
Catherine's Avatar
 
Join Date: Jan 2012
Location: Melbourne, Victoria, Australia

My Support Groups:
once your family reaches the medicare safety net, rebate get higher. Year starts on 1 january. We will reach safey net in march at this rate.
02-11-2012, 11:02 PM   #10
Samboi
Senior Member
 
Samboi's Avatar
 
Join Date: Jan 2012
Location: Australia

My Support Groups:
Same here Catherine - this year - I will be getting the out of pocket medical expenses tax deduction this year!
__________________
Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Filgotinib trial Jan 2018
Reply

Crohn's Disease Forum » Your Story » Dwy's Story
Thread Tools


All times are GMT -5. The time now is 10:24 PM.
Copyright 2006-2017 Crohnsforum.com