My Journey

[Alliabanana]

It all really started in 2000 - 2001, I had been feeling unwell for many months and was being tested for absolutely everything yet they always came back with the same response IBS, the words to this day make me angry!
The last thing that I remember is feeling very cold and sweaty all over, then the next thing that I realised is I'm in hospital and have been for the last three weeks, it turned out that part of my colon had ruptured and that I did in fact have Crohn's disease. Now two years previous to all this happening I was trying them to get them to confirm this diagnosis, but doctors know the best as they always do didn't and kept to the wonderful letters of IBS!!!!!!! (FRUSTRATION)

Diagnosis was concluded when I returned to South Africa with family, and after a very long journey to recovery I went into remission. (AHHHHH)
In January I started showing symptoms again and began to get worried, I live in the UK now and decided to talk to one of the GP here only to find out that they were not able to treat me at all, as the confirmed diagnosis was not in the UK. As we are now in September, I have been informed that I have Crohn's disease "Yipee", I have done the colonoscopy, the meal, MRI etc........ What I am struggling with is the amount of bowl movements that I am having, the stinging on the chocolate starfish, my bruising is immense and I have never been in so much pain before, I don't know what else to do to try and relieve it and have got to the point that I will try anything.

Medication
Pentasa 500mg: (2 tablets four times a day)
Prednisolone 5mg: (8 tablets in the morning)
Amitripty 25mg: (3 tablets at night)
Trumethoprim 200mg: (1 tablet twice a day)
Tramadol 50mg: (2 tablets four times a day)
Paracetamol 500mg: (1 tablet four times a day, to be taken with the Tramadol above)
Fluoxetine 20mg: (1 tablet a day)

Also I feel ever so a loan right now with everything that is going on, I really don't feel well at all and just to cap things off on the 23rd September I will be made redundant. I am beginning wonder if I will ever be able to lead a normal life/career and it's really important to me to show other people that I can make an success of myself.

Well this is me..................

Nice to meet you....................

 

[xoxava]

welcome!
sorry to hear your stuggling. i myself am still trying to get a DEFINITE diagnosis and i know how frustrating it can be. hang in there! i also feel very alone and that i cant lead a normal life or career. i am here if you ever need a quick chat. keep us updated.

 

[seaofdreams]

Welcome to the forum Alliabanana.
I can completely understand where you're coming from with the "IBS" diagnosis. For 3 years I went from doctor to doctor and all I was told is "IBS" and then I finally got sent for a CT scan and got the referral I needed all along.
When did you start on your current medications? It sounds like your arsenal isn't helping manage your symptoms as well as it should be, you might need to see your GI and talk about trying other alternatives?
I'm sorry to hear about your job, it's hard enough to live with this illness and then cope with other obstacles too.
It's totally understandable that you feel alone at the moment but you'll find that this site is full of so many wonderfully supportive people who are always happy to listen and share their wisdom

 

[Alliabanana]

Ahhh thanks xoxava & seaofdreams,

So far my GI wants to put me on immune suppressors, this is what we shall be looking at next Tuesday at my hospital appointment, to be honest I don't know allot about them, but from what I have read they look quite scary!

I have one of those days today where the bowl movement will just not stop and I'm looking about 6 months pregnant, trust me it looks odd on someone who is an size 6 and I dread to think how much weight I have lost this time.

I am so glad I have found this place and cant believe I haven't until now, I'm lately glued to my computer at the moment.

Something that has occurred to me is there is hardly any Crohn's awareness in the UK, sure you got the Cancer/Child Cancer/M.E, the list goes on and on but allot of these conditions are terminal, for some reason people forget about the illnesses that cant be cure and people like our self's have to live with and try to fit in with everyone else without them noticing that you have just stunk out the ladies loo's.

 

[seaofdreams]

I've been on Azathioprine for the last 12 months up until very recently when I had a bad flare and I've just started on Methotrexate, both of which are immunosuppressive medications. I did really well on the Aza for a long time. I had almost no side effects at all and my symptoms were mostly manageable. At first I was nervous about both of them but I seem to respond very well to both (well, until the Aza stopped working haha) Keep us updated with what you and your GI decide on

It's not really a very well known disease. I get self-conscious if I have to tell people what I have because they Google it and read up on all of the symptoms. I'm a very private person so I hate people knowing that I get D, pain, bloating etc.

 

[Alliabanana]

I know what you mean, but as soon as people do find out they Google it and for some reason all they see is that you have Crohns so you must have a bag!

Just makes me mad that people can be so blinkerd about things!


Grrrrrr

 

[Crohn's 35]

:welcome: Alliabanana :banana: I love your name lol...and bananas!

Wow I see you are on a lot of meds and they are not keeping your Crohns at bay? I am surprised since you live in the Uk that your doctors haven't mentioned remicade? Have you had any surgeries?

You are right about not enough awareness. Moneysense magazine here in Canada has the top 100charities and the ratings and such and there was NOTHING about Crohns or Colitis or IBD .. cant believe out of 100 charities Crohns isnt mentioned. Most likely because of the fact the CCFC is non profit, I dunno about the CCFA. I thought there were some IBD communities in the Uk but I am sure someone will see this... Anyone over the pond with info??

Glad you found our community , great people and information!

 

[Alliabanana]

Hi Pen,

I wish they were keeping it a bay, it was all working well for a little while but for some reason I have started flare up.

I spent last night on the sofa in pain, not wanting to wake my husband. He's been working so hard and has allot to deal with that & his attention seeking mother. Who decided that she also had a problem with her stomach and was in pain, when I was admitted to Hospital last month. She's 70 years old and can flip from nice as pie to neurotic in 30sec'd flat, "very strange woman", but my husband is an only child and her first and second husband have died now, so I guess that explains it.

I had surgery in 2001 but nothing since then and went into remission quite quickly after that, had the dull pains on and off since then but nothing I couldn't handle. I just don't know why it's started up again, just bad luck I guess. I have tried to avoid certain foods that I think are irritating me but cutting them out is not stopping the flare ups and it would seem that no matter what I eat it just irritates it.

There are IBD communities in the Uk, but there not very well known and they don't actively put awareness out there to be known, I think that this is a shame and a mistake. I honestly believe that if there was more awareness out there about Crohn's then when I fill in the health questionnaire in an application form for jobs people wouldn't be so frightened.

Alliabanana is something of a personal name between my brother and I. He died in 2008 unfortunately but the nick name never has, I have always been called Ali Narna so I recon I should just keep it and go with the flow.

 

[DustyKat]

Hi Alliabanana and :welcome:

Good to see you found your way here. What part of the bowel did you have removed? When is your next visit to the Gastro doc? Sorry about the questions!

I so hope you get some relief soon Alli. As others have said this is a fab place for support and info, so I hope you stick around 'cause we would love to have you. Welcome aboard!

Take care,
Dusty

 

[Dexky]

Hi Alli, welcome!! What does it mean you will be made redundant on 9-23?? Whatever it means, I hope you find something that works for you soon. My son is on 6mp, another suppressor, he has had no issues with it and has been very well on it since early this year. Good luck!!

 

[Alliabanana]

Hi Dusty,

I had a small part of my small intestine removed and out back together again, and I see my GI next Tuesday it cant come to soon if you ask me, I just don’t know what to do with myself at the moment. Don’t worry about all the question. X

It’s quite funny really, I surprised how little knowledge I have about all of this, every time I go to the doctors I just have more and more questions.

At the moment I am desperately trying to keep out of hospital, but if the doctor doesn’t come up with anything soon I may not have a choice.

I have only been on here a couple of days and everyone here is so nice!

Alli X

 

[DustyKat]

Hey Alli,

I was wondering if it was the terminal ileum, the end part of the small bowel? Do you take any supplements like B12 or Folate?

Dusty.

 

[Alliabanana]

Hi Mark,

It basically means that I will be out of a job on the 23rd, I’m seem to be having great trouble in finding more work because employers are worried about taking someone on with my condition. Pure lack of understanding, surprising that they will not listen to me even though I am the one with the disease.

Im glad to hear that you son is doing well on them, that gives me some hope for the future!

Alli x

 

[Dexky]

Thanks Alli, that's one of my fears for my son!! Finding meaningful employment with crohns!!! I'm trying to steer him toward careers that may allow him self-employment. Eh, he's ten...maybe I should back off for a while.

 

[Alliabanana]

Hey Dusty,

Im on B12 injections twice a month, as for the operation I don’t really remember much about it, all I remember is feeling ill and then waking up in hospital and the operation had been done. I was only 15 at the time, but I have ordered all of my medical records being sent to the UK this month, this should shed a little more light on it, purely because my parents aren’t around anymore it’s not easy finding someone who remembers (Headache) LOL!

Alli x

 

[Alliabanana]

Lol,

Bless him. Im 24 and still have no idea, im in my last year doing Economics and Political Law, (may sound like a smart cookie, but im blagging it really) Working part time as an accountant “fallen asleep yet?” Unfortunately due to data protection laws I am unable to take my work home with me.

If can push a 10 year old to start his own company then I think it would be the best way forward. My brother used to sell cigarettes for 20p each, turned out to be quite a lucrative income at 13 years old, but I think now a days it’s slightly more frowned upon.

Maybe candy?

Alli x

 

[reidyjo81]

Hey Alliabanana.

Welcome to the forum. What a rough time you are having a the moment, and not good about the job, that can trigger stress which can also affect your crohns, not nice. Hey look take one thing at a time though. If your still in pain after taking all those meds you really need to have a serious chat with your GP, have you not got a specialist consultant?(GI?)

I am on very similar meds to you at present, but not really suffering like you. Any questions then fire away.

Lots of get well wishes to you xxx

 

[Alliabanana]

Hey reidyjo81

You have made me laugh so hard then I think I would have messed myself.

I have a GP called Dr Pearce. He is about as helpful as a piece of drift wood, has the same personality a it too. I just can’t bear being in the same room as him and because its NHS I cant get rid of him either.

In February he put me on a set of steroids that weren’t meant for a Cronie and wondered why I started getting ill! Muppet!

My GI is wonderful though and has really helped me out in the last few months of having him, there seems to be light at the end of the tunnel!

What’s your opinion on Immune suppressors?

Love

Alli x

 

[Astra]

Hiya Alli

fab, you've registered!
keep in touch via Facebook whenever you need to!
glad you're here, lots of friends here for you and we will try our best to alleviate any stresses for you. Sorry you're going thro a bad time on the job front, something will turn up soon, you're a bright girl, someone will snap you up! Just gotta get yourself out there!
Regarding the immuno supps, go for it, you never know, one of these might just be 'the one'
Even better if you can get a biologic!
lotsa luv
Joan xxx

 

[treehugger]

Hey Alliabanana

The thing I see on this forum over and over is brave people!
Your so brave! That's all I have to say! lol

Good luck with everything honey! <3

 

[reidyjo81]

Hey
Will private message you as will be easier. x