Medication help

[JLgee]

Hi all,

I hope everyone is as well as can be at the moment.

I was diagnosed roughly 2 years ago and put on pentasa suppositories. October time last year I reported to my gastro doc that I was having more blood & mucus. She requested a calprotectin test which came back as elevated then put me on pentasa tablets along with my suppositories. My follow up appointment was due 1st April but has been understandably cancelled due to covid-19 outbreak. I am still bleeding & going to the toilet more and more so unsure what to do. Should I contact my GP/consultant or just leave it for now? It’s obviously not life or death but very uncomfortable and stressful. I am a key worker and want to continue going to work but when I need to go to the loo 5/6 times a day it gets a bit difficult.

[Valbaty54]

I think you probably need something stronger than pentasa, which is a baseline treatment. If you are bleeding every day then it would be wise to contact your Gastro consultant, or IBD nurse if you have one, who might prescribe something else like steroids, maybe. Otherwise, the GP may be able to help. Take care of yourself.

[JLgee in reply to Valbaty54]

Thanks I think I will give them a ring this week. Thanks again and take care.

[KEG1 in reply to Valbaty54]

I agree. When I was first diagnosed with Crohn's in 2000, I was prescribed pentasa and it never worked. Azathioprine worked for many years for me but there are newer treatments that work much better. I'm now on Entyvio but there is also Stelara, humara and remicade. I may have spelled some of those wrong but I would inquire about Stelara or Entyvio. Good luck!

[Shoad]

Do you have a helpline number for your gastric team that you can call and ask for their advice? I know everything is being pushed to one side whilst our nhs deals with the pandemic but I’m sure you can at least get a telephone consultation. Good luck.

[Skye22]

I know how you feel Im in limbo at the moment too. I was due bladder Injections and pelvic botox at end of march. I also see my specialist physio every fortnight for internal/external pelvic trigger point therapy and Abdominal Visceral massage for adhesions.

I feel like how I was pre-treatment with my symptoms and pain off the scale.

Like you say our NHS is somewhat inundated with covid patients which I totally understand, but when you're bed bound in pain it's only natural to worry about possible complications.

We will have to ride it out and pray that everyone gets through this difficult time.

Wish everyone good health and stay safe!!!

[Rollo47]

Hope this is of some help to you, having colitis for a number of years and I am on both oral and suppository which help. M y consultant suggested that I should go on some immuno suppressant which has worked for me , not a complete cure. Do have good days and bad days but mostly good. What is the colour of the blood you are passing because that is important . It does sound like you need a chat with your G.P. I do empathise with you I know exactly what you are going through.

What I have also found over the years certain food do not agree with me. Sulphite is definitely a no no for me . I have cut down on all wines and beers and only have a drink on rare occasion. I feel better fo it. We are all different.

[JLgee]

Thanks for the advice everyone. I couldn’t get through to my IBD nurse so phoned the GP who got me in for bloods, a stool sample and gave me a steroid foam enema to use for 2 weeks. I’m to phone my nurse in 2 weeks for my results and to see if I need to get more steroids. Thanks again!