Hi all, I am another fairly recent diagnosis.

My story is as follows: I have had bleeding without other symptoms on and off for about 12 years which was usually put down to hard stools. I had a colonoscopy about 5 years ago which found a polyp which was banded and the symptoms mostly went away for a few years. When I started getting regular bleeding again I went for a colonoscopy which also took a biopsy. The examination and biopsy confirmed UC and Crohns. I started on Azacol then Azathioprine, Mercaptopurine, Infliximab, back on Mercaptopurine but now with Allopurinol (apparently a gout drug) to slow the absorbtion. I've just been taken off this as my white cell count dropped too low and the consultant doesn't think it's working. My current symptoms seem fairly mild to me, I have mild pain, occasional bleeding and diarrhoea which is controlled by loperimide and I also take Mebeverine and some other odds and ends. I've had four courses of Prednisalone which seems to get things under control and Colifoam enemas twice which also seem to work well in the short term.

Currently I'm fairly anaemic and not sure if it's this or the drugs but find myself tired a lot. My work has been very understanding so far, although as I work from home I've managed to take very little time off. Just getting a bit woried as I'm assuming the next step is surgery since my consultant seems to have thrown his hands up in the air regarding treatment. This seems excessive for something that is causing me so little pain or inconvenience...

Anyway, it's always good to talk to other people in the same boat so I look forward to trawling the boards and making some friends here.

Nigel

Hi Nigel,

It seems too many of us find this site because we are struggling to get the right medication to control our Crohn's.  I can only hope that the answers are out there somewhere and atsome point the promised remssion is achieved for us all.  So I continue to live in hope.

I envy you for your ability to work at home, although in fairness my work have also supported me over the last year or so since my diagnosis, fingers crossed that they continue, as I have had quite a bit of time of work.

I had some strictures removed last year and also some 'fixed' with the words still echoing in my ears that 'most people have years of being symptom free' for up to ten years.  Unlucky for me! which makes me wonder if it's not the side effects of the drugs that are giving me more grief.

Have you had any B12 injections? I've have not long finished an initial 6 injection set, with a quarterly top up, and I have to say that it has made a big difference, I was only slightly anaemic, and an iron top up sorted that out.  So I would fully recommend them.

I wish you luck in your treatment, and keep us posted.

Regards

Julie

No, I haven't had B12, the anaemia is fairly recent but given it looks like we're giving up on this treatment because it's not working it's probably not worth it now. Yes, my consultant was optomistic about most people being in remission for years. I guess some of us just draw the short straw on that front. Thanks for the welcome, I intend hanging around . Oh and I'm 45, a fairly late onset apparently.

Nigel

Spooky I'm just a couple of years older than you, so it's very nice to meet someone the 'same' age.  But push for the B12, it has really made a difference to me.  At 47, I'm not convinced that mine is a late onset, as I have 'unexplained' severe stomach pain for years, which might explain why I need surgery 3 months after I was diagnosed!!!!  which was last March.  I laugh now as they always gave me gaviston for the pain!!!!!  Oh and pile cream for the abscess, little bit more than embarassed about that one though!

Well yes, I had bleeding for years before but not really any pain, even after initial diagnosis so maybe I wasn't that late either. The best thing about talking to other Crohn's sufferers is that you can talk about the embarassing stuff that we go through without having to explain all the background and worry they'll be disgusted or something.

The first time I came across a fellow sufferer was on a course at the WI. As the only male on the course and one of only two on any courses there I enjoyed being a centre of attention. One of the older women mentioned that she had Crohn's and was telling me this story of not quite making it to the loo and having to wash her undies in the sink, hoping nobody would come in. Thankfully that had never happened to me when I was out and about but I could have hugged her for sharing that as it made me feel so much less alone with the disease, knowing that others had to worry about the same things I did.

You're right about the sharing, and you do have to try and laugh about it, even though it can be hugely embarassing out there in the general mix of folk. But at least here, it can be genuine as I've not come accross anyone who isn't suffering the lovely diarreah, and all that it entails.  No disasters yet, but then you keep a keen eye open for all the loos.  I invested in a radar loo key (most likely to have loo roll as well), and book so I don't have to fret too much about where the loos are, especially after my mother-in-law nearly came into the public loos to check I was alright after I'd been a while, fortunately my husband stopped her, now that would have been a lovely conversation in public between me and the door, all the other loo users and my mother-in-law, who is not too tactful at best.

Hi nigel, well come to the site, i to have been throught unexplianed symptoms for years, and actually still not 100 % diagnosed, but 99 % crohns, lol for years it was ibs, and adhesions from having my appendix removed and then over active ovaries, that all started when i was 17, im now 42, and flared up in august last year, and been poorly ever since, I to have a job but not been in since August has i have aalot of accident even if im in the home, i have to plan to go out, ie, not eat for 12 plus before an appointment, anything that happens that not organized, i go to pieces and suffer with terrible anxiety. Any way glad youve found this fab site, stay in touch tc XXXsuexxxx

Radar key sounds like a good idea, I was looking into those earlier today on my local council website, New Forest District Council. Not much on there really it just said ring on a phone number to find out more so I guess I'll do that tomorrow. Anyway tiredness has me so I'll be off to bed. Laters

There's a link in the NACC website for the radar key.  

I ordered the Radar key today. As that youngster, tattyteds mentioned above I also tend to plan trips out fairly carefully anyway but any additional insurance has to be worth while. First day since coming off 6MP and seems OK so far but then I seem to recall someone saying it takes months to get it out of your system anyway. I see my consultant on Friday week to find out what the plan is not I'm not on any drugs...

Ty Nigel, ive not been called a youngster for a long time, when i had my first child at the age 27 i was called a mature parent the bloody cheek of it lol Hope all goes well xxxsuexxx

Hi Nigel, I was diagnosed two years ago and I find that days out always take a bit of planning. The first job of the family is always to spot the toilet in any new place we visit. I carry a card issued by the NACC which tells people I have crohns and I have found this very useful on occassions. I also carry a small pack of handy wipes, tissues and nappy sacks so if (or should I say when) I have an accident I can clean myself up.
I do find working very hard, I work in a school, and I am in the process of being made redundant and I am now very worried about trying to find other employment as they always ask about time off and I've had loads because of so many flare ups. All the stress is making me worse!
It's great to be able to talk to people I'm glad I found this site.

Hi dawn nice to meet you, i have been dr today because the stress im under due to work and sick money has caused me to become very anxious and depressed, my dr has given me antidepressants today, and the fact that i opened my heart to her this morning and aired all my dirty washin to her, i hope this is the rite road for me to take, ive not worked since august last year and my employers have said they may consider finishing me on the grounds of ill health, so i just have to wait for that to happen. Tc and keep us informed of whats goin on  xxxsuexxx

I feel a bit of a fraud on this site somethimes listening to the stories others tell. I had a few hiccups in my diagnosis process but we got there in the end. I don't really suffer from pain much and my fairly understanding employer lets me work from home most of the time. I do carry the "emergency kit" around with me but have never yet had a problem in public or at work so I feel I've been very lucky so far. I guess I am a little anxious now that I'm not on any anti-Crohn's drugs but am still feeling OK. I've certainly not been through some of the stuff that poor Oli went through as a kid . Stress definitely makes things feel worse and I saw that there have been several studies into IBD and stress with nearly all of them showing it makes symptoms worse. I try and minimise my stress but work is the one thing we don't have as much control over. I've been self employed in the past but running your own business is more stressful in many ways so it's swings and roundabouts...

Hope you are both doing OK. Nigel XX

Thanks nigel, reak away hunni, they are there for all to see, XXXSUEXXX