Hello and glad I found you

Hi, I would like to introduce myself, I was diagnosed with Crohns last year. I have been on Pantesa for the year and been symptom free for most of it.

In last 2 months though I have not been feeling to great, having runs and bleeding a lot, generally not feeling great. I have been on steriods twice in last month, but no real improvement, still bleeding and feeling run down. Due to see consultant in Hospital next week and not sure what they will advise, I know it is silly but you do worry about things.

I was feeling really lost, as I could find sites about symptoms but not that had any real feedback from sufferers. I will now spend some time looking at this forum and getting advise on coping.

regards

Joanne

Hi Joanne it's nice to meet you.

I'm a newbie to this community too, I'm currently undiagnosed and am waiting on my next test. You're right about this place though, there's so much knowledge on here and plenty of friendly faces too! I honestly believe if it wasn't for the people on here I would still be feeling very lost and uneducated about what to expect etc.

I hope you find the community as helpful and inciteful as I did, I'm sure you will, it's a nice place to be, especially when the times are tough.

No doubt our paths will cross again, I wish I could give you some
information but I'm afraid im still learning myself! I'm sure others will comment on here soon so please be patient, they will get to you!

All I can say is you're definitely not alone in ur struggle, and now that you've found this place you shouldn't be feeling it again anytime soon!

Take care and I hope you start to see some improvements real soon!

Craig

Hello to you both :bigwave:
Recently diagnosed myself and I found the forum when I was undiagnosed, but Crohn's had been mentioned as a possibility. I was searching for clues on any measures I could take to relieve my symptoms and the welcome and support has been wonderful.
I've got my first consultant appointment on May 16 having got a definite diagnosis via Barium FT a couple of weeks ago. My GP put me on Pred until I see him because my symptoms were worsening and my bloods showed sign of current inflammation. Seems to be working!
Easy to say 'don't worry', Joanne, but it's hard not to I know. I hope the consultant will get you sorted out. I went for 8 months undiagnosed Craig and boy is it frustrating waiting for those hospital appointments and test results.
Wishing you both all the best.
Helen

Hi Joanne and welcome,
It sounds like you are having a flare.Whats your weight like? Is there lots of blood and every bm or occasional? Where about is your crohns located and how long have you been on pentasa. Were you on steroids when first diagnosed?
You say that you have had steroids a couple of times this month- what dose and for how long?..who gave you this? Its just that you would normally be on steroids for a few weeks for it to be effective.
Lots of questions but it is easier to give some advice with more info.

Hi

I have blood every BM and sometimes I just pass mucus/blood, which really worries me. I have a new GP, who put me on a 2 week course of Steriods (6 a day for a week then reducing down by a tablet each day for 1 week), did not really improve so went back to the Doctor 2 weeks later and they put me on the same coures of tablets (have to say doctor was not very good, he ask me what I though he should do).

Doctor also changed my normal tablets from Pentasa to Salofalk, and told me to stop taking Omaprazol that my consultant at hospital perscibed me when diagnosed.

Finished this lot of steriods, but still no real improvement. Weight OK, not really lost much weight, but having to go to toilet often.

I have crohns in lower bowels and anus.

Joanne

A 2 week course of steroids really won't be terribly effective in crohns, ok for asthma or similar but usually it would be 2 weeks at 20-40mg or so and then reduce by 5mg every week. Is the salofalk tablets or enemas?. Why did they stop the pentasa and omeprazole? Did they say why? It may be worth contacting your consultants secretary and asking her to ask him for advice to tide you over until you see him next.
Let us know how you get on.

Hiya Joanne
and welcome fellow Brit

Just to concur with others, that's a short run of Pred! It didn't even have a chance to get going!
With the best will in the world GPs are NOT IBD specialists. I get my scripts off my GP but I would never have him prescribe something that he knows nothing about, albeit ask YOU for advice on it, how absurd!
Take advice from the consultant and arm yourself with ammo, read about other treatments, Pred isn't the only med, and Pentasa whilst good for maintaining, will not help to get any inflammation under control, especially bleeding.
My friend who has UC has stopped bleeding with Remicade (Infliximab in the UK) and feels well on it. You might be lucky enough to get this, depending on your hospital's budget tho, it's also a 'postcode lottery'
Read our Remicade Club thread for info
good luck Joanne and let us know how you get on.
lotsa luv
Joan xxx

Thanks everyone for your response. I am due to see my consultant next Friday and will ask a lot more questions and hopefully he will provide me with a better treatment than GP.

Thanks for all your advise and a actually feel better about things from reading the treads on here.

Joanne

Hi Joanne and welcome! I concur with everything the others have said....

Good luck with your appt next week. If you have been bleeding a lot, I would ask him/her to run a full set of bloodwork, including iron & hemoglobin panel.

Take care of yourself and get plenty of rest and fluids in the meantime!

-Amy

Hi, I have now seen consultant, who has put me back on Pentasa, and on 7 week course of steriods. Worryingly whilst examining my stomach, he found a lump, told me not to worry as I was health, but will send me for a CT scan to check it out.

Hope that this is nothing, is any one aware of lumps with Crohns.

Joanne

Hello and Welcome

I haven't been here long but you will find a mass of support and useful info on here :thumleft: