Newest Prisoner

[vishal]

Hi all,

Normally, I don't join a lot of forums. However, I've been browsing this one for a few weeks now and everyone here seems really wonderful and supportive. Hence, here I am to share my story and also to thank everyone else for sharing their's. It has helped me a great deal to gain a better understanding of this weird and annoying little disease.

So here's my story so far. Perhaps not very unique or dramatic but nevertheless mine

I'm currently 31 years old. I've been having more than normal bowel movements (3-4 per day) since around 2004. However, I started getting chronic abdominal pain in Feb 2007 and after doing typical tests, was diagnosed with Crohn's in July 2007 (Age 28). I was prescribed Sulfasalazine (500mg, 4x per day) for a month. It seemed to have worked and I felt better for a while. Over the course of next 3 years or so, I'd get a flare up roughly every 4-6 months at which point I would take Sulfasalazine and I would be fine again.

I relocated in June 2009 and was in remission for about a year. However, in Aug 2010, my symptoms got a little worse. I started feeling very nauseas and throwing up few times and the pain was simply unbearable. Like many others, I could hardly eat anything at all. Was referred to a GI in Oct 2010 and underwent the same series of tests again over the next couple of months. Was initially prescribed Omeprazole as the pain seemed to have moved quite higher up along the abdomen. Obviously, didn't have a very favourable result with that. Finally, in Jan 2011, was prescribed Budesonide and Mesalazine (Pentasa). It worked fantastic for the first couple of weeks but got a little down hill after that. So in Feb 2011, I was put on Azathioprine (125mg). Its been just over 4 weeks now and I'm starting to feel it kicking in a little. Been getting a little joint aches too. Have a follow up appointment with the GI in April. Lets see what happens.

So, if you are still with me - thanks for taking the time to read this. I guess I should mention an additional, and rather important reason as to why I'm really writing this. Thing is, I have been in somewhat of a denial and a little embarrassed (silly, i know) all this time as I have not yet disclosed this condition to my family (and friends). My thinking has been that I didn't really want to burden them with anything. However, now, I'm thinking if my symptoms are to get worse in any way, I don't really want it to come as a total shock to them and make them feel worse. Or maybe I'm just getting to a point where I need to tell others as I think it is having a deterimental effect on me otherwise.

Either way, thank you all again!
Vish

 

[Guest]

hi Vish, welcome to the forum.

have you really gone through all this, all the tests, and feeling ill, without telling anyone in your life? i can't imagine how hard that must have been for you - i wish you'd found us sooner!

i guess the answer regarding telling/not telling your family depends on how close you are to them... some people really aren't close to their immediate relatives for one reason or another, so in that scenario there wouldn't be much point telling them..

but if you are in contact with your family, and they care about you, then i would say yes, absolutely, tell them. you need people in your life to know what's happening with you.... IBD can be a very isolating and lonely disease, which in itself is hard enough to deal with, but not having loved ones even know what we're going through makes it even worse. you need support & understanding, and that goes for your close friends too - i wouldn't tell everyone you know, as there needs to be a trust/privacy element, but those you've chosen carefully as good friends should be told too, in my opinion.

and you have us too, now.

 

[Jer's Girl]

Hi Vishal!

All I can say is that personal experience has taught me that life gets better when you don’t hide who you are from the people who love you; even the bad parts. Not everyone knows how to deal with this disease, but you have to try to remember that we have it, and even we don’t know how to deal with it all of the time! Sometimes however, peoples love and support, and even understanding, can surprise you. Having the support of the ones you love can make all the difference in making this disease bearable.

Welcome to the forum!

 

[vishal]

Thank you dingbat and Jer's Girl. Reading your responses, I feel I'm in the right place!

Up until now, only my manager at work and my wife knew (hard to keep anything secret from her! lol). But, that'll be changing shortly! As I'm quite close to my family, its better they hear it from me, now.

Thanks for your support again!

 

[ameslouise]

Hi Vishal and welcomed!

Sorry you have been feeling bad but hopefully that Aza will work for you once it totally kicks in.

I'm glad you decided to tell you family. As the others have said above, this disease can be very isolating and you will need the support of your loved ones. You have a new family here at the Forum, and we all understand what you are going thru. But ultimately, nothing can take the place of your "real" family and the support and caring they can offer you.

Good luck - sometimes it can be tough share this kind of news. When I had to break it to my parents that I had been rediagnosed from Ulcerative Colitis to Crohn's disease, it was really hard. I knew they would be so worried about me having a chronic disease. But my whole family has been wonderful and so supportive - I hope yours react the same way.

-Amy

 

[margie]

Hi Vishal
Welcome to the forum. Like others above have said, it is very important to have support, whether your family, your friends, or just coming here to the forum. Some of my family and friends know about my Crohn's and others do not. Some of them understand and have heard how horrible the disease is and are very understanding and others don't understand what we really go through in our daily lives. It is a hard disease for sure.

The support that I have received here in this forum has been incredible. I am so glad that I have found myself here to get the support that I need from others going through the same as myself. Means a lot, when you have someone to turn to for support that knows what you go through every day.

I hope that you start to feel better soon. My thoughts and prayers are with you.

 

[ruthyp]

thank you for sharing your story!

I was exactly the same, im 22 and telling friend my age that i have this condition that means i go to the toilet so much and get cramps, was extremly embarrasing. But i got admitted for the entire month of november, i was amazed to see their reactions when i told them as i couldnt hide it anymore.

Alot of them said they wished i had told them because they just thought i was moaning about a little tummy ache, but in fact i had a serious condition that they wanted to support me with. They only talk about it if i want to, but if i dont they just treat me like they always have!

I couldnt have gone through what i did without my family either, im blessed with an amazingly supportive family and im sure your family and friends will be the same.

Your not a burden! This is something you have got and you'll need to deal with it, its not something you can ignore and the support of friends and family makes you feel a hell of alot better when you have a down day.

good luck, hope all goes well
xxx

 

[Grumbletum]

Hi Vish
It's nice to meet you and great that you found this place to be among friends who know exactly what you are going through
I'm currently going through tests and it is looking increasingly likely that I have Crohn's. I've told most of the family and quite a few close friends that this is what it might be. I kind of had to really as I knew some were worrying because I was missing some events through pain/illness and have lost quite a lot of weight and I know that one or two were worried that it might be the big C.
You might get a few surprises when you tell people. Two people I know quite well have confided that they have IBS since I told them and they have been very supportive. Others have other friends with Crohn's - in fact it is a bit scary on this small island to hear how prevalent the disease is.
One of the great things about the forum ( and there are many! ) is that you can go into the gory details and no-one bats an eyelid because they have been there too.
Hope you are feeling better soon.
Helen x

 

[Awbrey]

Hi Vish,
Happy you have joined the forum, the people are great here Im a lot like you in the aspect of denial. I hope you tell your family they will be great support when you need someone

 

[Astra]

Hi Vish
and welcome

At last! A fellow Scouser! Hurrah!
I thought I was gonna be the only one here all on me Tod!
Glad you found us, lots of friends here for you.
It's a personal choice whether we disclose our illness, I didn't tell anyone in work for 5 years! But of course I had to once I was in hospital for a week last year and all the peeps were asking!
Good luck with the gastro in April and depending on your hospital, (hope it's Whiston?)there's a good chance they'll fund a biologic such as Infliximab (remicade) or Humira, if the Aza fails.
lotsa luv
Joan xxx

 

[CDDad]

Hi Vish,
Welcome to the forum. My disease started when I was 20 and I hid it from most people for 20 years. When it got really bad is when I finally came out. Now I tell everyone who is interested.

Good luck with your next appt, I hope you keep feeling better.

 

[vishal]

After being here for just a day, I feel so much stronger already! Everyone here seems to have so much courage and energy and I am so grateful of you sharing that with me. Hopefully I will have a chance to reciprocate!

 

[vishal]

Hi Vish
and welcome

At last! A fellow Scouser! Hurrah!
I thought I was gonna be the only one here all on me Tod!
Glad you found us, lots of friends here for you.
It's a personal choice whether we disclose our illness, I didn't tell anyone in work for 5 years! But of course I had to once I was in hospital for a week last year and all the peeps were asking!
Good luck with the gastro in April and depending on your hospital, (hope it's Whiston?)there's a good chance they'll fund a biologic such as Infliximab (remicade) or Humira, if the Aza fails.
lotsa luv
Joan xxx

Hi Joan,

Thanks for the welcome! Good to see a fellow Scouser too! Saying that, I've only been in Liverpool for less than 2 years (am from London). But, I feel like home here already!

I actually live in Crosby so I go to the Aintree hospital. Not too far from Whiston either as I work in Knowsley. How are you feeling now? Did you have to undergo a surgery when you were in hospital?

Vish

 

[e13 boy]

So, if you are still with me - thanks for taking the time to read this. I guess I should mention an additional, and rather important reason as to why I'm really writing this. Thing is, I have been in somewhat of a denial and a little embarrassed (silly, i know) all this time as I have not yet disclosed this condition to my family (and friends). My thinking has been that I didn't really want to burden them with anything.
Vish

Hi vishal,

I was the same for many years mate,hardly a 'dinner table' conversation!
many great,understanding people on this forum.

(I see you are a scouser - red or blue? I'm claret&blue WHU.)

 

[Astra]

Hiya Vish

Aintree's a good one too!
Never mind that you're a newbie Scouser! Glad you chose Liverpool to work in!
I'm doing very well at the mo, bit of a scare last year when I was blocked and infected, but avoided surgery at the 11th hour, lots of Pred saved me!
Gastro says I'm in remission now, so fingers crossed it stays that way for a while!
You stay well too
xxx