Anyone from Scotland??

[Danico85]

Hi there

Was just wondering if there was any other IBDers on here from Scotland?

Would be good to hear from you and compair stories, treatments etc.

As far as i am aware, the west of Scotland has a huge IBD problem (me and 4of my close friends have it) and would be nice to hear your thoughts..

Nicky

 

[GlasgowGirl86]

I'm in Glasgow but I don't have an official IBD diagnosis yet. Still undergoing tests and even though the surgical consultant I saw last week suspects I have Crohn's he is reluctant to start me on any treatment until they have a definite diagnosis. The waiting time inbetween appointments/tests is so long and I'm so fed up being left to suffer and have to take time off work in the meantime. Currently waiting on an MRI scan.

 

[Danico85]

Hi GG

I know how you feel. the waiting times are horrific in Scotland.
And i also feel your pain regarding the absences from work situation. I nearly lost my job through it, but i got through it and now have another role within my work that definetly helps.

Ive not had an MRI scan yet but i have had colonoscopies and barium enema's before.

I havent been told (since 2006) if i have Crohns or UC. They say it looks more likely to be UC but other consultants have said Crohns, so nearly 10 years have past and i still dont know exactly what i have lol

Is it the Southern General you attend? how do you find it? Im attending the RAH in Paisley.

Nicky

 

[GlasgowGirl86]

I had my colonoscopy at the New Victoria hospital and had my appointment last week at the new southern. Felt like I was in an airport at the new southern! No idea where my MRI will be, I'm assuming the new southern as well. I'm just a bit confused as to why I've seen a surgical consultant before I've seen a gastro doctor.
10 years is a long time for them not to know what exactly is wrong with you. I've only been unwell since February so I think I might have a long way to go before I get anywhere in terms of treatment.
Do you have a good gastro doctor at the RAH?

Kerry

 

[Danico85]

lol i was actually thinking of changing from the rah to the new southern if it was better but tbh the rah isnt too bad. they have a few specialst IBD nurses who do take time for you and they definetly know their stuff. i see the consultant every 6 months (unless i have an issue) and its usually and in and out job. I dont think he really takes much time, he just looks at me and because i dont look ill, and im not a skinny or anything he just presumes everything is fine.

When i first went to the hospital in 2006 the only did blood tests and a colonoscopy and within a week i was diagnosed with IBD and put straight on anti inflammatories and steroids. My body reacted well with the meds and ive been probably about 60% health since. Id love to be 100% but im not wanting to start tweeking my meds because it may end up with me having a flare. Dont get me wrong, ive had mini flares maybe once every 18 months and i get put on a course of steroids but its been managable but ive not had any surgery or any complications which is good. and i still live a relitively normal life, although my diet isnt the best, i find when i start eating salads etc it plays havoc with my stomach. but i still work and go out for a drink most weekends so its not really held me back in that respect.

How has your life changed since your stomach issues?

 

[GlasgowGirl86]

I was off work for 3 months when I first became ill, partly because I couldn't handle the long commute to work not being near a toilet and partly because I work as a nurse and as I had diarrhoea with no known cause and could potentially be infectious. I had a good couple of months after changing what I eat and had more good days than bad but I did nightshift at the weekend there and had to get sent home sick because the abdo pain was so bad and I couldn't fart without mucus flying out! I found that during those good months I could have a fairly normal life but during rough times like just now I just want to curl up with a hot water bottle.

 

[palapu]

Hi, I am from Edinburgh. I have been diagnised with Crohns in March this year after very bad flare up followed by Anal fissure. Since then I have been on various med which did not help, GI now wants me to go on Infliximab.

Thanks
krishna

 

[GlasgowGirl86]

Hi Krishna, sorry to hear you've been having such a rough time and I hope you find the right medication for you.

 

[Danico85]

Hi Krishna, your obviousley quite new to Crohns. Just want to say your life might not always be as hard as it is now. Once you get the right medication for you (it may take a while) then you can start to get your life back.
You read some stories on here and it makes you think your life is going to be tough... it may... but you can also be one of many who enjoy a good standard of life.

Nicky

 

[palapu]

thanks guys.. I think its been hell for the last 7 months.. never there was a day when I was not in pain.. I am sure that something will work for me and will be back to normal... fingers crossed...

 

[Axelfl3333]

I,m from Coatbridge

 

[Danico85]

Hi Axel

Your from sunny coatbridge... nice to meet you. Im Nicky. I stay just outside of Glasgow.

How you coping with IBD then?

 

[GlasgowGirl86]

Hi Axel I'm Kerry. I'm not too far away from you in Cambuslang. I'm curious as to how you find the services and treatment in NHS Lanarkshire? All I seem to hear are bad stories, would be nice if someone had something positive to say about it lol.

 

[Axelfl3333]

Hi danico,hi Kerry I,m doing ok but there are warning signs I,m going off the rails which is annoying going on holiday soon I don,t need any bother.hope your all doing well.

 

[Danico85]

Hi Axel

yeah im doing ok thanks. like most i have good days and not so good days. i can sort of read my body now like..

- i know if i have alot to drink on a friday or saturday i will have issues the following day.

- if im completely out of my routine and comfort zone i get a slightly nervous stomach

- if i get blood in my pan it means my stools are too dry and hard and i need to take more than my usual 1 stool softners per day

- drink gallons of water per day - always helps

- stay away from fruit and vegetables that are hard to digest such as apples, lettuce, sometimes tomatoes.

Things like that.

But thats just me, everyone is different with this disease. some people can handle things i cant and i can handle some things others cant. But there will come a time you will know your body and can read the signs in advance.

 

[GlasgowGirl86]

I hope you have a lovely holiday. Where are you off to? If you're off abroad make sure you have decent travel insurance just incase.

 

[Axelfl3333]

I,m visiting Las Vegas,San Diego,San Francisco back to Las Vegas for a few days and home.

 

[Margaret234]

Hey! Eastkilbride here! Diagnosed in April this year, put on a course of prednisone but to no effect, started azathioprine but was hospitalised, however they think I had a virus and I've been put back on azathioprine again - there was talk of surgery but they were reluctant because I'm 17, and wanted to hold off until absolutely necessary - I think they meant until I perforated because they really didn't want to operate! Still have severe symptoms everyday, unable to sleep, eat, walking and exercise hurts - makes me bloat and spasm, so I'm here basically to read other stories like mine and try to get a little boost

 

[GlasgowGirl86]

Hi Margaret! I'm Kerry and I'm just down the road in Cambuslang. Sorry to hear you're having such a bad time of it. Get back onto your gastro doctor or your IBD nurse and let them now how bad things are. Keep on at them till someone listens and you get the help you need. I hope you're feeling better soon.

 

[Margaret234]

Hey! It's so good to hear from a fellow Scot! Trust me, I've been on at them - all they've said is that if anything gets worse I've to come straight into hospital, and I've already spent a week in with the virus. I know there isn't much they can do, just wait until azathioprine kicks in I suppose, try and eat and things. Ever since I've been diagnosed though everything seems to have gotten worse! But I'll just have to hang in there, thanks for the reply

 

[Danico85]

Hi Margaret, Good to hear from you. Its always good to hear from a fellow Scottish IBD'er!

Im sorry your not feeling great but id like to think the doctors would want to wait until your bowel was perforated before operating. They probably just dont want to quickly operate on someone so young and maybe feel like your not at the surgery stage just now.

Trust me ive been where you are, i was diagnosed around the same time as you and like you, there was talk of surgery but they wanted to give the meds a chance first and thankfully they didnt because i now have a decent quality of life and havent required any surgery and ive had the disease for 12 years.

Also, give the Azathioprine time to kick in, ive been on them for years, i think they take 8-10 weeks to have any benefit so just try and be patient with them and hopefully you will start seeing/feeling signs of improvment soon.

Just remember, we are all here to help and any questions no matter how trivial you think the question is... just ask. Will try and help you as much we can.

Nicky

 

[Margaret234]

Thank you so much, it's great to hear that you didn't get surgery and are now fine - they were thinking about a resection but the reason they were unsure was because a part previously inflamed had went down and the part adjacent was now affected - so they could have taken that part out and it wouldn't have helped in the long run! Also it's great to hear you're on azathioprine and it works! I know I have to be patient but it's difficult when it's your health and waiting means being in pain everyday thank you for the support!!