Lost.... But still fighting ;o)

[Bernie1986]

Hi all,

I'm new here and am really looking forward to reading and getting help, advise and inspiration from my fellow sufferers, I can't promise that I won't occasionally let of some steam :ybiggrin:

So here's some of my story:

I've had a long gruelling emotional up down rollercoaster of a "journey" with my health. It all started with water infections 10 years of them, although when I had urine tests investigated it was negative in showing an infection, (I thought I'd mention this as i really feel it's related) I have to drink at least a couple of litres a day or I can feel it coming back.

I had no problems with my bowel until about August 2009 when I randomly pooped on the floor infront of my friend- with no warning what so ever! Well it was highly embarrassing at the time of the crime, but.. as you do we had a good laugh and it made their night!
- when they left the pain set in and the blood came a few days after, I had to use the toilet out the back of work (you know why) and before long I was in hospital for two weeks, the pain "HORRENDOUS...as you all know" the morphine- my best friend

Sorry I've just realised how much I'm babbling.....
I had two weeks of bed rest after hospital and then went back to work.

In January 2010 after the results from a colonoscopy I was diagnosed with Ulcerative Colitis and since then I have suffered from severe joint pain in my hips and back mainly but also in the rest of my joints. The bowel problems seemed to be under control until recently (I have taken a variety of medications most recently sulfasalazine). My stomach has always been very bloated and recently I have been experiencing stomach cramps and pain (slightly different from before) and my doctors thought I could have crohns, i had another colonoscopy and although there were ulcers in my large intestine and multiple ulcers in the entrance of my small intestine and inflammation (which the blood tests didn't show) they now think this is unlikely to be crohns from the Biopsies so I'm back to square one for the minute.
I have also been seeing a rheumatologist but appointments are few and far between, (the last one was 8 months ago).
The joint problems have spread and my I get bad cramps in my top leg joints, clicking and a deep bruised feeling.

Sorry if my story has decline in the sense of not making sense, I shouldn't have started my mission so late.

Hears to all of you who deal with the best and the annoying nature of it, keep strong oo:

 

[Jessi]

Hi and welcome, Bernie! I am so sorry that you're currently having UC probs. I understand a lot of what you're going through, as your symptoms seem very similar to mine. I have the same kind of joint pains, as well. My joints mainly hurt in the same places you mentioned, but also really strong in the hands. Do you have troubles with your hands, as well? How is the sulfasalazine working for you? I hope it's helping. You'll have to teach me a little about water infections, if you don't mind. I've never heard of it before. Please fill me in. I'm curious.

 

[Bernie1986]

Hi Jessica,

Ohhh man, it so great to have found someone in a similar position, obviously better if neither of us had it!

I sometimes have pain in my knuckles but not enough to cause a huge problem...are you seeing a Rheumatologist?

About the bladder:
Well I'm have to drink water and plenty of it or I get terrible stomach pain and it very painful to use the toilet (I think it get inflamed inside?).
I was in hospital bout half a year ago as I was in agony, it's awful but some way down the line I learnt to control it with water!

The sulfazalazine isn't the one for me as I still have ulcers and am inflamed but hopefully I'll have my med's sorted when I'm properly diagnosed!

How's everything apart from the joint with you Jessi?
:dance:

 

[Ian]

Hi Bernie and welcome

Sorry to hear you've not got a successful treatment plan going yet. How come they haven't given you stronger meds? Even if your disease hasn't been determined (UC or Crohns), it's clear you have one or the other and the treatments for them are practically identical with a few exceptions. I'd have thought they could justify giving you steroids and/or immunosupressants even without a fixed diagnosis? Hell I've had IBD for 6 years and they're still not entirely sure what mine is lol.

Hope you're feeling better soon .

 

[Jessi]

I'm sorry about your meds. I hope it gets figured out very soon.

I have had arthritis for 18 years, but never have been to a Rheumy. I'm pretty stubborn and foolish?) about my joints. I just suffer through it. My arthritis isn't Rheumatoid, though. It's Psoriatic Arthritis. It's kinda different from everyone else.

My UC is currently in a so-called remission. Chronic pain and fatigue try to rule my day, but no current probs involving toilets.

Have you been on any biologics ever? I get Remicade infusions every 8 weeks - and no other drugs.

 

[Lacy Dawn]

Hello there!! Welcome! I'm very new here myself but I have been learning to control my symptoms with water as well. I drink insane amounts each day and if I don't drink water but opt for something else, I can DEF feel it. I'm not sure if it's a mental and physical thing or what... But it's what I do too! I hope you can find comfort on this forum and an answer to your health. Wish you the best!!

 

[Bernie1986]

Wow thanks,

I tell you what some of this stuff is foreign to me, this is the first time I've spoken about these things with people in the same boat, I suppose because I didn't want to except I was poorly... I wish I'd done it ages ago :ywow:

Ian- your story has made me feel a little less mental, lol! It's quite strange as I have no diarrhoea now (excuse the bluntness?) I have ulcers and inflammation from the Colonoscopy, but the biopsies and blood test didn't indicate this? I really feel I need to meet up with my IBD nurse but there just so busy.
I was on a break from sulfazalisine for a few days but I have no plan at the moment.
Do you have regular meetings regarding your condition, do you feel frustrated with no diagnosis?

Jessi- thanks ).
Was you diagnosed through your IBD nurse/ Gastro?
Are you on med's for your joint pain? I spend hours and hours in bed through the joint pain, do you have the same issue?... Sorry to probe you I'm just really interested?
Ps. Have you tried Reflexology on your hands? I'm suggesting it because I've had it on my feet And..it..is....AMA...ZING, please try iT at least once so you can see what I mean.

Lacy- Thanks, wecome to you too.
I was shock to see that you have the same thing with the water as well! I'm pretty sure its not a mental thing (LOL!) mines related to the bladder and not the bowel tho, is yours? and started way before any bowel trouble... If it help for us then I say why not :dance:

Thanks to you all, hope your health behaves itself xxx

 

[Lacy Dawn]

Mine is bladder problems as well! Strange!!! I became VERY close to all of my urologists on the base I work at before they eventually told me to go see someone else! What kind of bladder issues are you having?

 

[Bernie1986]

Hi Lacey,

Woah! so maybe it could be related to other problems for some of use? .... well thats is an ideal senario, how comes they told you to go somewhere else?
I have no idea whats wrong with mine as i learnt the water technic i havn't looked itno it anymore, i feel like it might be inflammed but it's just an educated guess? how about you?

xx

 

[Jessi]

Jessi- thanks ).
Was you diagnosed through your IBD nurse/ Gastro?
Are you on med's for your joint pain? I spend hours and hours in bed through the joint pain, do you have the same issue?... Sorry to probe you I'm just really interested?
Ps. Have you tried Reflexology on your hands? I'm suggesting it because I've had it on my feet And..it..is....AMA...ZING, please try iT at least once so you can see what I mean.

I don't really know what kind of doctor it was that diagnosed me. I was so out of it at he time. It was so severe that I had to be dressed, fed, carried to the bathroom, and everything else by my husband. It's much better now. That was the first time I ever had any joint problems. Now, it's nowhere as bad as it was then. I have tried reflexology. I love it. Shiatsu is even more wonderful! Have you tried that?