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I'm glad I found this forum!

Hello everyone,

As the title of my post suggests, I am very glad I found this forum. I was diagnosed with Crohn's disease and entropathic arthritis in July of this year, following a bout of diarrohea that went on for four months. Prior to that, I hadn't felt right for about a year and had no energy, and things got worse and worse, to the point where I was doubling up in pain every morning just before work (I had a long journey in which didn't help, used to make it to my mainline station and then had to stop, rest and sort myself out before continuing my journey). My joint pain got so bad I had to use a disabled toilet at the station before continuing my journey and used to get shouted at, sworn at and harrassed by people who questioned me as to why I was using it as I "obviously didn't need to". Actually, I did as I was in so much pain and felt so ill it was really what I needed. Plus, I have a RADAR key for just that reason as recommended by my doctor due to my health problems...

It was only when I went to visit my parents that they remarked on how bad things had become - I was having to visit the toilet several times an hour, and was noticing blood in my stools. I had never had to deal with such a thing before and did everything I could to find help. I was diagnosed with IBS initially and the medication I was prescribed didn't help. I also had a house move, a bereavement and extreme stress at work to deal with which didn't help.

Health wise, things got to the point where I was so unwell, when I went to my doctor he signed me off for two weeks and prescribed antibiotics, which helped a great deal. When I came of the antibiotics, things started to get worse again. I managed several days at work, then not only was the diarrhoea back, there was more blood. It got to the point where I couldn't eat and realised I needed to get something sorted out as soon as I could. That night, I called NHS direct as I had some pretty alarming problems with blood loss and how ill I felt - they referred me to an out of hours doctor who called me and told me how to at least get it under control.

Luckily I had the medication I needed to put something together to stabilise myself, and was then able to leave my home to see my doctor. Initially it was hard to get an appointment - until I told the surgery my syptoms and they fitted me in. I had been told to go for a blood test that day, which I did, and when I saw the doctor, told him what was going on.

He sent me to the emergency assessment unit and I was then admitted to hospital. The only bed available was in the cardiac ward and luckily it was a side room. I don't think I could have looked after myself so hospital was the best option. I didn't have a great time in hospital as my food allergies weren't taken seriously (the effects of my allergies really screw up my digestive system) and I kept being given things I couldn't eat, then was told when my family were visiting that I had to be transferred to a ward, which not only spoiled the visit but being on the ward itself had a very negative impact on my health.

I was in for a total of 12 days and when I was told I had to have a colonoscopy done by the specialist I was referred to, I was able to use my private healthcare to cover it and was also able to be discharged. Much as the procedure wasn't fun I was glad it got done as it was essential and helped with my diagnosis. I would also like to say that my specialist was brilliant! I found it all hard to deal with... and then around this time I had a relationship break-up to deal with as well.

I was prescribed pentasa and had to get in the routine of taking my tablets regularly. I'd dissolve then in a shot glass and swig them back, much to the amusement of those around me! I then was referred to another specialist for my joint problems, which has impacted so badly on my mobility I walked with a stick for about a month. I am now on sulfasalazine, which really seems to be helping.

I'm now trying to learn to live with Crohn's. I had two major incidents of soiling myself in public and developed a fear of this happening again (I now tend to wear long coats and have emergency supplies with me just in case). I also find it hard to leave my flat in the morning as the station I use to get to work doesn't have a loo and I end up feeling very anxious if there is a train delay. I used to have a very busy and active life before this, and hope to get some of it back.

I have felt pretty depressed for the past few weeks as the diagnosis and managing my health really has changed my life. I'm determined to make the best of things at work, as my colleagues and in particular my manager have been very good to me through this and it has been appreciated. The thought of getting back into the exciting things I used to do is a great motivator - I have a great love of public speaking, stage performances and trying new things.

Apologies for the length of this post.... it really has been quite a journey! And thank you for reading!
 

Crohn's 35

Inactive Account
:welcome: Jack, we are glad you found us too! We have a great bunch here from the UK... seems like across that hemisphere from there to Canada to the States is getting hit hard with IBD.

You shouldn't have to suffer with soiled pants, get Questran (cholestyramine) from your doctor. It saves alot of embarrassment. Some use DEPENDS or something underneath.

You have a good attitude and have determination which is a good sign. God knows we are only here once.

Applesauce (unsweetened) preferrably homemade helps slow down the D, rice and the low residue diet. Must be even harder with food allergies. Glad have joined us hope to see you around!!! Cheers!
 
Hello and welcome to you jack..:)
Glad you found us here.. It is a great place to hang out and gather information about our disease.
I was diagnoses around the same time as yourself and had also found some kind of relief with antibiotics as well.I had 3 weeks of Flagyl. It got rid of my symptoms for about 2 weeks and then it all came crashing back with the diarrhoea, blood etc.... Horrible!!


Your story corresponds with many ion this site. I hope the meds will help get some of your confidence back for your private pursuits and thanks for sharing your story with us..
Again welcome ...:)
Take care..
 
Del - thank you for the welcome. It's great to know I'm not alone. I have been looking around this site and it's starting to cheer me up a bit, hearing other peoples' stories, what they have experienced and reading the advice and other tips.

Now I have my energy back, it's been hard to know where to start in order to get my life back on track and how to manage the Crohn's with it, so this forum is certainly helping.

Pen - thank you for the welcome, too! :)
 
There are some quite inspiring stories around here Jack as I am sure you will find for yourself.
They have certainly lifted me from my low point of a few months ago.
A lot of brave and courageous people here especially the little ones.
Take care..
 

David

Co-Founder
Staff member
Hi Jack and welcome! I'm glad you found this forum as well. We're here for you anytime and I hope to see you around!

All my best to you!
 
Hi, Jack,

good name. are you a fan of dr. who?

seriously though. we KNOW what you been suffering from. hard isn't it? but a very big welcome. i've had crohns for 37 years now, omg! yes, its hard, especially with no energy. i sincerely hope they sort you out soon as it sounds like you enjoyed life a lot.

i lived on Questran for years, but it gripes like hell now and doesn't always work for me.
i would recommend, like Pen, that you give it a try.

Diane
 
Hello Spooky1,

Yes - I'm a fan of Doctor Who :) In fact, when I was on Pentasa I took great delight in using the foil tablet packs to make myself my own little army of Daleks, much to the amusement of my friends! Both my specialists know I like Doctor Who and we will chat about Dr Who in my appointments which puts a smile on my face!

I looked up Questran and it seems to be similar to a tablet I sometimes take, when needed, which has the generic name immodium. I have some singing performances coming up and am prepared to try whatever I have to in order to ensure I am able to get through them.
 
omg, a real stage performer. I sincerely hope you get to perform, sounds like a really good lifestyle. i hope that the crohns is controlled enough for you to enjoy life.

I always used to rely on six sachets of questran and 8 immodium a day and just hoped for the best. it got the better of me in the end and just killed me with griping pain and wasn't working as well as it used to.

if i absolutely have to get out the house for an appointment i starve myself for a couple of days
 

Astra

Moderator
Hiya Jack
and welcome

I'm a HUGE Torchwood fan!
Glad you found us too, stick with us for support and a few belly laughs along the way, we're all a bit mad here, and that helps a lot!:ylol2:
In time you'll be able to manage this disease, and lead a normal life!
Normal? what's that then!
Normal is debateable!!
lotsa luv
Joan xxx
 
@ Spooky1 - The stage performing is an antidote to my full time job in an office, and it's something I really love to do :) It's been very hard dealing with not being able to do that while I have been so ill this year. I'm learning how to get the Crhon's under control and am getting used to telling peopel I work with about it, just in case I have a flare up, as it's helpful when they know. I'm very glad of my specialists who have helped me manage it :)
 
@Astra - Torchwood really is one of my favourite shows - and I often go to conventions decked out like Captain Jack, becasue I really love that look.

It used to be that I just liked the costume, but now I find that wearing braces is great for days when my stomach is feeling fragile (my trousers stay in place and my belt buckle doesn't dig into my abdomen, which really hurts) and wearing a long coat is very reassuring. It's all very ironic! :)
 

Crohn's 35

Inactive Account
Hello Spooky1,

Yes - I'm a fan of Doctor Who :) In fact, when I was on Pentasa I took great delight in using the foil tablet packs to make myself my own little army of Daleks, much to the amusement of my friends! Both my specialists know I like Doctor Who and we will chat about Dr Who in my appointments which puts a smile on my face!

I looked up Questran and it seems to be similar to a tablet I sometimes take, when needed, which has the generic name immodium.
I have some singing performances coming up and am prepared to try whatever I have to in order to ensure I am able to get through them.
Hey Jack, to let you know imodium is not a good thing to take, once in a blue moon is fine but Questran is a packette mixed with water , you control how much you need and it should work. I took it for a year after my second resection and dont need to take it any more. I take imodium about 2 times a year....

Btw I forgot too mention stress is a major culprit for flaring you have had all 3.. A death, moving, stress at work, the 4th is a divorce. Nice to see you fit in here very well, your a popular guy here already!!! :ylol2:
 
@ Pen - why thank you! :) And I will bear in mind what you said about the immodium. I am seeing both my specliasits in the next few weeks and will make a note to speak about the Questran. And regarding stress... I also had a change of job at work, too... I think I had it all going on!!
 
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