Pain that wakes you up?

[xxjemmamxx]

Hey everyone,

I think my Crohn's has gradually got a bit worse since my nurses decided to cut my Pentasa from 4g to 2g a day. I (stupidly) tried takeaway pizza the other day and really suffered with it! Then last night I couldn't get to sleep until about 2am because my stomach was really uncomfortable and sore. Plus I think my Crohn's also flares up a bit whenever it's my time of the month

Around 5am I was woken up by stabbing pains all over the front of my stomach, left and right side, lower back and sometimes shooting up to the bottom of my ribs. It was most painful laying on my left side and my back. I've had worse pain before in a bad flare but that only lasted for 20 minutes or so. This didn't ease off until 7.30am and after painkillers. I felt sick too, but I knew I wouldn't actually throw up.

Not sure what's going on or what to do. I have no idea where I stand with my illness anymore. Any ideas or advice? Only been diagnosed for about 9months so don't have much experience with this.

As soon as the pain goes I try to convince myself it was nothing but I know it was bad at the time!

 

[Jennifer]

Is your GI planning on starting you on something else to help treat your Crohn's? Mesalamine isn't one of the best treatments out there for Crohn's as its topical (Crohn's causes inflammation deeper into the intestinal lining) http://www.crohnsforum.com/showthread.php?t=50253. Any reason why they're lowering the dose as well? Are they simply planning on taking you off of it eventually with no plan of starting you on anything else?

It sounds like you're in a flare since you had such a strong reaction to the pizza (assuming you don't have celiac) and since your symptoms have been getting worse with the reduction of meds. Your resection wasn't that long ago so its important to get the inflammation under control now. Resections alone cause a narrowing as scar tissue shrinks over time. Inflammation on top of that will make that section even more narrow. Have you had any tests done recently (even blood work, yet that isn't the best test for some people) that shows if you have inflammation going on?

The pain you described sounds similar to a partial blockage which can be caused by a narrowing. They tend to clear up on their own yet its important to avoid foods that move through you quickly as food will build up in the narrowing causing gas build up, lots of pain (including back pain), nausea and sometimes vomiting. Yet I'd still want testing done to make sure that that's actually what your dealing with. You could have an MRI done, CT scan (yet try to keep those limited so opt for an MRI if you can) or even a small bowel follow through. That's if your resection was in the small bowel, if it was in the colon then you could easily go straight to a colonoscopy. Yet you could have a scope done and an MRI to rule out both sections.

No matter what you do, let you doctor know about your symptoms. If they leave you on your current meds with the lower dose and simply tell you not to eat pizza then please find another GI. Keep us posted.

 

[xxjemmamxx]

My GI doesn't want me on Pentasa at all he wants me on something stronger, but my IBD nurse has already started me on 2g Pentasa so he upped it to 4g Pentasa. After my second appointment with my nurse they changed it back to 2g for some reason that I'm not aware of and I have been on that for over a month. I'm not sure if the Pentasa was doing anything in the first place as I have always had symptoms.

I'm not a celiac so I know it wasn't that. I'm due to have a blood test in about a week prior to my GI appointment on the 8th sep. how you have explained it makes sense to me as I have noticed that my stools (when they are solid, which is rarely) are very thin and narrow. The pains were different to normal Crohn's pains when you just need to go.

I had 10cm of small bowel and 4cm of colon removed by the way.

 

[Astra]

Hiya Jemma

just to concur with Jennifer, Pentasa isn't going to cut it, you probably need an immuno suppressant such as azathioprine.
Why is your IBD nurse taking precedence over your gastro? That doesn't make sense to me.
By pass the nurse and speak to your specialist in IBD.
Good luck xxx

 

[Jennifer]

I hope that GI appointment is with your actual GI and when you speak with them let them know that your GI nurse has been handling your situation poorly. I've never had to deal with a nurse before, I'm assuming that some GIs do this because they have too many patients yet this particular nurse may not be the best qualified. If you can, try to keep contact with your actual GI. Some give out their email or can contact you by phone (that's how I speak with my current GI as he's aware that I live in another county) yet if nothing else try to make more appointments with them even if its just for a checkup. Make it clear to your GI that you would prefer treatment from them directly rather than having to go through the nurse. Keep us posted on the appointment.

Also Pentasa can be taken in combination with other meds so I'm not sure why your GI didn't just write you a prescription or fax in one for whatever they wanted you on.

 

[xxjemmamxx]

I'm not sure how it's meant to work to be honest, but it seems to be that they disagree and each time I have an appointment with one, they change my medication to what they think it should be, and then when I have a meeting with the other it gets changed again.

I know myself that I'd probably be better off on something stronger or another medication alongside Pentasa. I'm going to have to tell them this when I see them but I'm not very confident with where I stand with my IBD as it is still new to me.

Thanks for all the advice and for putting it in perspective for me xo

 

[Jennifer]

That's really strange and honestly I wouldn't feel comfortable with that sort of treatment. If your GI isn't the boss and let's the nurse screw around with your meds, then you're more than likely going to get sicker because most of the meds require 3 months or more to start working properly. So if your meds keep switching then its almost like not being treated at all. If this doesn't change then if at all possible try to find a new GI.

Astra is this somewhat common in the UK or is this all news to you?

 

[valleysangel92]

Hey, just saw this.

Pentasa is a pretty mild drug and most people find that it isn't very affective. I'm very confused as to why your GI doesn't over ride the nurse and give you something else, infact unless she's got extra training as a nurse practitioner , she shouldn't be prescribing anyway, I know my IBD nurse has to get clearance from a doctor before giving a prescription.

I agree with Jennifer, unless your gi starts treating you properly and takes charge of the situation I would go to your gp and ask for a new referral to a different GI before things get worse for you. Crohns can be a very aggressive disease and needs proper management . Medications need to be given a fair chance to work and bloods need to be repeated regularly to ensure proper management. I hope you get better treatment soon, you don't deserve such lack-luster care.

 

[xxjemmamxx]

Thanks everyone. My mum works at my GP and the letters they receive from the hospital regarding medication come from both the GI and IBD nurse (I think she is qualified enough to prescribe). My nurse is really nice, I just don't understand why my medication was changed up then back down.

I've only met my GI once in March and things were a lot different back then! I don't have any contact details for him but I see him again in about 2 weeks. I don't know if he knows that my meds were changed back.

 

[Astra]

I don't know whether this is common practice in the UK Jennifer, it doesn't happen in my hospital, that's why I questioned it.
I think Jemma knows the score now and knows what to do, ie make enquiries to the GI why the nurse is changing her meds.