I would like to ask some questions about ulcerative colilits please

Digestive health
1

i as diagnosed with AC in march this year after having colonoscopy in january.  When the consultant saw me he explained what i had but didnt tell me much more.  He gave me a precription for Asacol and told me to have a blood test in a weeks time.   He Said he would see me again in a years time .    That was the last i heard from him until my GP surgery rang me to say that that in had a prescription from the consultant for Adcal D3.  I have had no guidance both from my GP or consultant since and i have suffered another three flare ups since i was diagnosed.  This partucular flare up has so far lasted four days and i wondered if anyone took time off work with this and how long these flare ups last?   Also should i be following any sort of diet and how will i find out what triggers these attacks?   Do i have to contact my GP to have some allergy tests done  or do i just fathom it out by myself?

i would be very grateful if somebody could give me few pointers please.

pauline

2

Hi Pauline - Consultants are normally supported by IBD Nurses who are a first line of contact and can give advice. Flare ups can be very debilitating. In my case there were no triggers and diet appeared to play no part in my UC. I would contact your consultant directly.

3

Hi Pauline, very sorry to hear what's been going on with you and what sounds like with no support. Firstly, did the hospital not give you access to the IBD nurse - usually you can call them if you run into any problems in between your next appointment. Might just be worth finding out if there is an IBD nurse that you can access. I'm very shocked that they've just left you without any support or further information.

I've had many flares throughout and had to take time off, at the moment I've been off since June and to be honest GP's don't give the best advice in what to do as their not specialised in this condition.

I find the most effective way to treat a flare would be to carry on with what you have and see if the GP can also perscribe you Mesalazine enemas and see if that eases symptoms, alternatively call the clinic and say you need an earlier appointment.

Food is a bit of trial and error, what suits one person might not suit another. I find that bland kind of foods are better when in the middle of a flare- mash potatoes, rice, chicken soup.... avoid foods with fibre. You will find that as you go on you will know what aggravates your bowels and what doesn't.

With triggers it's another one of those things that you have to look out for everytime, mine has been spicy food amongst other things but this time I believe it was stress related!

I'm not sure any allergy testing will help but you could ask, I don't think I've ever had one for UC.

It's pretty awful though that the system have left you with unanswered questions and not really knowing who to turn to! It is forums like this that really do help.

I hope you can get in touch with the IBD nurse or an earlier appointment with your consultant.

Let me know if you have any more questions.

-------------------------------------

UC since 2013

Now on Remicade infusions about to have 4th infusion, methotrexate and Mesalazine tablets.

Flaring since June 2016.

4

Hi Darasdad1

My consultant didn't even mention an IBD nurse otherwise I would have made appointments with her. I shall make some enquiries at the hospital and see if I can make an appointment with her.

Thanks for your reply 🙂

Pauline

5

Hi Shal75

Thanks for replying. As i said to Darasdad1 above my consultant didn't even mention an IBD nurse otherwise I would have made an appointment with her. I am going to contact the hospital tomorrow and ask who the Ibd nurse is and make an appointment with her. I did try to ask him questions at the time but I didn't have a clue about uc so didn't really know what to ask at the time.

I suppose it is trial and error with food so I will try and keep a diary of what I eat so I can see what my triggers are.

Thanks so much for your help.

Pauline 🙂

6

The IBD nurse usually has a help line where you can call or leave a message if there not there, if you do get a number for them. 😊

7

It sounds like you've not been best served. There are 3 IBD Nurses under the Consultants at Dorchester Hospital and they've been great support especially when I had 2 serious "Flares" liaising with my GP and changing my Meds. They're also have a lot of knowledge. Good luck and hope you feel better soon.

8

Hello,

Thank you for your concern. I just came back from a GI in Jefferson City, MO. They are looking at the possibility of a parasite causing my problem, since it began 1 week after being in a hotel hot tub in February that had not been cleaned for the season. Most parasites are resistant to chlorine and all antibiotics. Sending kit to lab in San Diego.Will let you know what happens.

Sincerely,

Micky 13

9

Thanks for your help Shal75 🙂

10

Hi Pauline,

My advice would be to see a GI specialist right away. GP's do not have the knowledge to treat your condition. The GI will diagnose what they think based on the c-scope and treat you accordingly. If you still are not better in a few months, see another GI Specialist.

Sincerely,

Micky 13