Pentasa making it worse? Please help

[Susabelle]

Hi,

I've only recently been diagnosed with CD (Dec 2015) and I was reasonably asymptomatic. I'd have bouts of cramps and D but I could usually link it to alcohol or certain foods.

My doctor put me on Pentasa 2g per day only while they looked into my small bowel to see the extent of the disease (it was found mild active disease in my ascending colon). I had an MRI on Monday and waiting on the results.

But for the last few days I've noticed blood in my stool - which I've never had before. I've also started getting pain about 3 inches about my belly button, as well as sharp pains in my lower abdomen on the right and left side.

I generally feel more stomach pain, it hurts when I move too much, and now I feel a low grade ache all the time.

I've really worried as I've never had this before and it seems like the Pentasa is making is worse, even though its a low dose.

My doctor is going on holiday so she moved my appointment from, Feb to June (I'm in the UK).

Can I just stop the Pentasa? Has this happened to anyone else?

Please help.

Susabelle

 

[ronroush7]

Is there a backup for your doctor that you can call? Sending prayers and support.

 

[Susabelle]

Thank you

I'm not sure who I can contact, I've never been referred to long term medical supervision before and I've only met my doctor twice (original consultation and diagnosis).

I've been trying to get the consultant or her secretary on the phone since last week, but I get no reply.

I'm not sure what else I can do

 

[ronroush7]

Do you have an emergency room you can go to?

 

[Susabelle]

I'm not sure it's bad enough for ER and i don't want to waste their time. Though if the blood or pain continues to gets worse I will.

I know it is crohn's and most people have these symptoms, but they are new for me and coincide with taking Pentasa. The blood seems strange, I had a colonoscopy at the end of Nov, and thought here was mirco inflammation it looked healthy, no ulcers or anything.

 

[ronroush7]

Can I ask in what way does the blood seem strange? Pulling for you.

 

[Susabelle]

Thanks Ronroush .

It seems strange because 1. I've never had blood before and 2. If the colonoscopy showed mostly healthy colon in November, where is the blood coming from?

It seems like a quick change :-/

 

[Kat123]

Hi Susabelle,

It could be that your inflammation has worsened since your colonoscopy, rather than that the Pentasa is causing the new symptoms. I was originally put on Asacol (mesalazine in a different form) and it didn't get my disease under control, things worsened and I needed steroids to get the flare in check.

If this is the case for you, it's better to get it sorted so one than later so do keep trying to contact your consultant. If the secretary does not respond to your phone messages, can you try to email? You can probably find a contact on a clinic letterhead or the hospital website. Also, most hospitals now have an IBD specialist nurse, who you can contact between appointments with any new symptoms or concerns. Again, you might find her details on a clinic letter, website, or you could try just phoning the switchboard and asking to speak to the IBD nurse.

Let us know how you get on xx

 

[Susabelle]

Hi Kat123, thank you its good advice.

I've been trying on email as well but didn't get a response. I managed to get through this morning after I posted (finally!) but apparently my consultant is off site and she didn't know where the IBD nurse was and but said she would give her the message if she found her.

I will try to get the IBD nurse number and email now, because that didn't sound very promising.

I guess I'm hoping it's the Pentasa rather than the inflammation getting worse, because otherwise things have gone downhill.

 

[ronroush7]

Best to you.

 

[Kat123]

Well, that's some progress. I hope you get to speak to the IBD nurse soon. If I were you I would push for an earlier clinic appointment. Like, this week or next earlier. I don't know if Pentasa can cause bleeding as I side-effect, but I think it's likely the IBD nurse will also think it's from inflammation and will want to increase your meds, not reduce them. I know it's scary thinking things might have gone downhill but it really is better to deal with it. Once I got some steroids in me for my first flare-up, I felt a lot better quickly. Though, as I'd left it a long while, I needed a weeks stay in hospital for IV steroids.

Please let me know when you hear back from the nurse x

 

[Susabelle]

Quick update, after 3 days of emails and voice messages. I haven't heard a thing from my consultant or IBD nurse. I contacted PALS today to see if they could help but they said they couldn't get through either, but left messages.

I stopped the Pentasa on Monday and felt a little better yesterday and this morning, I definitely had more energy, but in quite a bit of pain this evening.

I really disappointed in my hospital. My GP tried to help, but said she couldn't do anything without talking to the specialist team and said to keep trying to get in contact with them.

 

[ronroush7]

You need something for the pain and you need a doctor you can get a hold of when you need him. Keep us updated.

 

[Kat123]

Argh, Susabelle, I'm sorry you are having such problems. I'm really disappointed in your hospital too.

I hope that you hear back tomorrow. Even if the consultant and IBD nurse are both too busy, surely there is a registrar you could talk to. Can you phone the secretary and ask to speak to a gastro registrar?

Glad you feel a little better today. I still think you need an urgent appointment. :hug: