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K

Kataran

Hi everyone. I’ve been lurking for a while just trying to learn as much as I can about Crohn’s. I got diagnosed in November with the doctor saying it "presents like Crohn’s". I’ve been ill since August, I think the stress of moving into our new house (first time on the property ladder) and losing my job in the same week is what kicked it all off.

I’m in the UK so I’m dealing with NHS waiting times. Also I’m slightly concerned I’m not getting all the treatment I should. My problem up to now has apparently been Procitis, my doctor prescribed Salofalk Mesalazine suppositories but after two months I don’t think they’re doing much. I feel better than I did but I’m still seeing blood and now I’ve developed a need to have multiple BMs throughout the day. On top of this I’ve had to change GP due to the house move (I didn’t tell them I’d moved till last week) so right now I don’t know who I’m supposed to book with.

I’m feeling a bit left on my own to cope with this. I asked about diet but was just told that it probably wouldn’t make any difference given my problem is so far towards the bottom end of things.

I’ve got an appointment for a colonoscopy in a couple of weeks but I’m starting a new job on Monday, telling them I need two days off in my second week is gonna be fun.

How the hell does anyone live with this? I’m tempted to just not eat ever again. No food, no constant trips to the toilet.
 
ronroush7

ronroush7

Welcome. You might also consider keeoing a food diary to determine what foods your body won't tolerate. Does your doctor know about the blood. You may need to be on stronger medication.
 
scottsma

scottsma

Well-known member
Location
Tynemouth,
Hello and welcome,I was originally diagnosed with proctitis twelve years ago and was also prescribed supps.It did clear the blood up after a week or so,but we're all different and it might take longer for you. I continued to use them for maintenance for a few years.Try to persevere,at least until your colonoscopy.You will get a letter with your results and a follow-up appointment.Your GI will explain his findings and maybe a change in meds.Unforunately,being NHS (for which I'm eternally thankful) you will have to wait 4-6 wks for this.There should be an IBD nurse at the hospital.If you're concerned give them a ring with your GI details,and you should get advice.Please make sure you attend your colonoscopy.Your new employers should allow hospital appointments.You don't have to explain what it's for,just show your appt. letter.Please ask for any advice or support you need from the forum.It's what we do.Feel better soon.
 
erk

erk

Hi Kataran,
In a similar boat to yourself. I began moving in with my boyfriend in October, half way through the month I started losing blood when visiting the toilet. Not long after our office was notified we may all be being made redundant after Christmas. I wanted to get to the bottom (no pun intended) of my health issues so I deliberately hadn't told the doctors I was moving as I have no idea where or how I'd get to the nearest doctors from the village I've moved to.
After colonoscopy I was also prescribed Salofalk suppositories, but was given Pentasa instead, which is the same active ingredient just a different brand. All in all since first visit to the doctors it took about 4 months to get hold of my prescription, but I still haven't been given a diagnosis.

Like you I have inquired about my diet and was given no advice, but I kept a food diary and have found that eliminating gluten alleviated my problems with bloating. On really bad days I'd still visit the bathroom 15 or more times often just to get blood out, or bloody stool.
I've been taking the suppositories for a week now and they've stopped the bleeding for me, and lowered the number of trips I have to make to the bathroom. I was advised after 2-4 weeks if the suppositories aren't working they would suggest alternative medication. Maybe there will be an alternate medication they can try with you?

In any case I am really sorry to hear about your job stress and house moving. I am lucky our office got bought by another company meaning the majority of us kept our jobs. And I understand your frustrations with the health care - the way this plays out seems very patchy, you have to do a lot of the legwork yourself to get things done. Most helpful information I have I've discovered myself, a lot through this forum.

Despite what the doctors have said I would still recommend a food diary/recording BM's approach to see if any type of diet change can help you, it's worth a shot.

Sorry for the massive post - hope some of it is useful in some way!
 
K

Kataran

Sorry for the radio silence, been busy settling into my new job. Following all of your suggestions I have been keeping a food diary along with taking an extra step to switch to the lofflex diet. I’ve been on it for a week and I think I am feeling a lot better.

I took a risk and told HR of my condition on my first day, my theory being if they threw me out on my ear then they’re not who I’d want to work for anyway but she was actually quite understanding and that the more I can keep them informed the more accommodations they could make to help.

Not sure when I’ll try adding food back in, I’m actually quite liking eating healthy food I’m making myself.


Pro
 
ronroush7

ronroush7

Kataran said:
Sorry for the radio silence, been busy settling into my new job. Following all of your suggestions I have been keeping a food diary along with taking an extra step to switch to the lofflex diet. I’ve been on it for a week and I think I am feeling a lot better.

I took a risk and told HR of my condition on my first day, my theory being if they threw me out on my ear then they’re not who I’d want to work for anyway but she was actually quite understanding and that the more I can keep them informed the more accommodations they could make to help.

Not sure when I’ll try adding food back in, I’m actually quite liking eating healthy food I’m making myself.


Pro
Click to expand...
Glad the new diet is helping
 
scottsma

scottsma

Well-known member
Location
Tynemouth,
I'm glad your new employers are understanding of your problems.It was good to be up front from the start.Glad your diet's helping too and I hope you enjoy your job.....as well as anyone can enjoy working that is.hahaha
 
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