Recently diagnosed and struggling

recently diagnosed and struggling

Hello everyone

I'm completely new to this forum malarky and thought I'd give it a go.

I've had bowel problems for over 10 years and lost so many jobs due to sickness its incredible, always being told it was gastro enteritis or I had picked up a virus etc. I finally got help when my partner rushed me to hospital with abdominal pains I couldn't handle anymore. The consultant there said the situation was ridiculous and I should have been looked at throughly a long time ago! Thats when my journey started.

I have now been diagnosed and was left hanging by my consultant in this scary world of having an incurable disease. No advice was given and my questions were vaguely skirted around. I had to chase up the consultant for my GP to get my recommended medication list. Finally got it and was put on 4 grams of Pentasa each day.

I took the Pentasa as instructed and did very well for the 1st 3 days and then the pain hit! oo: I had incredible abs pain, serious runny tummy in which water was going straight through me! Hot and cold sweats, headaches, dizziness and vomiting. I called the emergency dr and he advised a hot water bottle and paracetamol and stop tking the Pentasa.

I saw my GP as soon as I could and she advised that I should have been set up with blood tests BEFORE i started taking the meds and regularly whilst taking them. It seems that its not until after the fact that a professional says that things should have been done differently for me.

I'm terrifed to take the Pentasa again, I've been told I've GOT to try it again at a lower dose and I should never have been put on such a high dose to start with, I should have been on a lower dose and built up to 4 grams! The pain was so intense I honestly thought my insides were splitting open....I don't want to go through that pain again!

I'm scared confused and worried because I feel like i've been left to navigate this world without any support from the professionals that are supposed to be helping me. I feel crazy saying this but i feel neglected. Things aren't getting better and the medication makes me feel worse then the disease does.

Wishing everyone health and happiness. :rosette2:

Hello Tiger
I'm really sorry to hear that you have a Crohn's diagnosis and that it's taken you so long to get it. But I'm glad you found us here on the forum. It is a scary world and you haven't had the best of starts treatment wise :-(
4g of Pentasa does seem high, but I'm not a doctor so can't make an informed comment about that. It possibly depends on the severity of your symptoms. What tests did you have to confirm the Crohn's?
A good place for you to start ( as well as having a good surf around this forum ) would be to have a look at the NACC site:
http://www.nacc.org.uk/content/home.asp
They've got all sorts of information, leaflets you can download, print etc about the disease, symptoms, treatments etc. It's a big learning curve, but arming yourself with this information will help with doctor's appointments etc re: knowing what questions to ask and understanding what doc's are saying. I also think some doctors tell you things on a 'need to know basis' and that perception of that need can vary from doctor to doctor.
Have you started on the lower dose yet and when are you seeing your GP or GI again? Stick around with us and fire away with any questions you have: you're not alone - there's load of us here and we'll help you all we can :hug:

Love the name Grumbletum! That did make me smile!

Thanks for the response, its much appreciated.

I had a colonoscopy and barium meal x-ray to confirm that the crohns is in the terminal ileum. I haven't started on the lower dose because i'm a wee bit scared and I'm going away for the weekend and don't want to ruin that because we have a 6 hour drive as it is! I'm going to start when I get back on Tuesday but I've got to be brave and just do it! I've got an appointment in 3 weeks to see how I get on with the lower dose and a blood test this Thursday.

Its so nice to know I'm not alone, my friends and family must be getting bored with hearing me grumble! Bless them all

Hi and welcome! When I started Lialda (a 5-ASA like Pentasa), it was very bumpy the first week. I'd say by the 3rd day of taking it, my symptoms were much worse. But after a few days, things settled out and slowly improved.

I sure hope the Pentasa doesn't cause as many side effects this time around. Keep us posted!

Thanks Jill

I think I'm just going to have to be brave :queen:

Hello Tigerpants..good name also!
Hope your retry of pentasa works well. I can't help you as I was never put on pentasa..straight to pred then azathioprine. I have would preferred to be on pentasa as it is a safer drug, so be brave and give it another go. ;-))

You could always try just one tab for a couple of days to get over the hurdle of restarting.

Good Luck

Hello Tigerpants .. Im new here also .. All I would say to you is .. Everything is trial and error Bless you fror being brave , I hope it goes well . good luck .
Jan

You guys are so great on here..........I feel like my hand is being held by some lovely people. Thanks xxxxxx

:bigwave: Hi tigerpants, cute name gotta love that . I think your situation is alot like mine was...instead of saying I am not sure, they just push you along and give you more drugs. Pentasa is a mild drug but if you react to it, no doctor should tell you to take it...very strange. Since you may not be in the milder stages, another mild to moderate drug is Entocort,, pricy but has not got the side effects no where near Prednisone.

I can't say I blame you for not wanting Pentasa, it isnt the only drug for this disease. I had Remicade and was taken to ER, I was in so much pain they sent my husband home to look after me, I couldnt get ouf of bed. Now if a doctor said try it again, you can be sure I would seek another Gi and pronto. Humira was the next to try but I waited a full year before trying another cause I was scared of the reaction I may get. Turns out it was fine, but mild and peter'd out.

You are new at this and you have to get all the info you can get..dont let the doctors push you away, some people here ended up in emergency surgery, so you have to educate yourself . Hang there, we are here to help you!

I was put on 4 g of Pentasa right away - 2 g in the am and 2 g in the pm. I had no problems, no side effects. I took it for 9 months and then they switched me down to 2 g a day. I never really had much effect from it either and it took me 6 months to convince my GI that I wasn't noticing any difference in my symptoms.

If you had only been taking it a few days before the epsiode, it might not have had a chance to really work on the inflammation and the episode was just symptomatic of the underlying inflammation. Or it could have been a reaction to the meds. Or the Pentasa just isn't strong enough to tackle your level of inflammation. Definatley talk to your GI.

Hi Tigerpants,

Welcome to the forum

Are you going to a regular GP or a GI? I admittedly don't have a good grasp how the UK system works bu here in the US, we'd always suggest people be treated by their GI.

Since they don't seem to be giving you the attention you deserve, you may want to showcase that you're educating yourself (and are thus not to be trifled with) by asking them:

1. Why you weren't put on Budesonide (Entocort) in addition to the Pentasa considering the UK treatment algorithm calls for that unless you have a severe case (according to Inflammatory Bowel Disease - An Atlas of Investigation and Management).

2. If they've checked your vitamin B12 levels since your CD is in the terminal ileum. And when they say no, ask why not. And if they give you some BS answer or blow you off, demand it. Even go so far as to request that they not test your serum B12 but instead test your homocysteine and methylmalonic acid levels.

Don't let these [insert fun UK derogatory word] people tread on you. You DESERVE quality treatment.

Good luck!

*hugs*

Hiya Tigerpants
and welcome

Remember we're all different in our symptoms and that goes for meds too. I've been on Pentasa for nearly 6 years with no problems.
But..As with other mesalamine products, serious adverse events may occur. PENTASA is contraindicated in patients with a hypersensitivity to mesalamine, any other components in this medication, or salicylates.
Mesalamine has been associated with an acute intolerance syndrome (3% of patients in clinical trials with mesalamine or sulfasalazine) that may be difficult to distinguish from a flare of inflammatory bowel disease. Symptoms include cramping, acute abdominal pain and bloody diarrhea, sometimes fever, headache, and rash. If acute intolerance syndrome is suspected, prompt withdrawal is required.
This from their website
So, NO you don't have to take this at all! You could be allergic to it.
Question your doc's decision as to why you should, yeah?
Pentasa is usually well tolerated but it's more of a preventative, a prophylactic, but you've gotta get the inflammation under control first. If your inflammation is in the TI, then Budesonide (Entocort) would help. It's dead cheap over here, expensive overseas!
Research your options on here and good luck
lotsa luv
Joan xxx

Thanks for the spelling correction Astra! For some reason it is ingrained in my brain as "Bedenoside". Heheh. If you were going to edit my post, you could have at least inserted a good word into the [Insert fun UK derogatory word] considering I was thinking of you when I wrote that

Oh were ya now!
I'm a good girl I am! :shifty-t:

Hi Tigerpants...

Were you on steroid therapy at all, like an IV in the hospital or prednisone? I'm wondering if you were in pain to get admitted, they must have given you something other than pain medication. Maybe the taper was too quick?

I was taking 2g of sulfasalazine, and I got switced over to 4g Pentasa like you with no side effects to speak of. My GI is using that level of Pentasa to taper me off the Entocort.

Also, do you drink alcohol? I've known situations where a person drank while taking asacol (another 5-asa compound like Pentasa), and they got severe symptoms like yours.

Think i may be allergic to Pentasa!

Thanks for all your advice guys, its been very helpful and I'll be going back to my GP armed and dangerous on Thursday! :thumleft:

I was brave and took the reduced dosage of Pentasa at 2g a day, with pretty much the same result as taking the 4g a day........I've stopped taking it again because the pain and runny tum is so severe, i think I may well be allergic as suggested. Like everyone says its hard to tell if its a flare up or reaction to the drugs, but one thing is for sure every time i take Pentasa the pain is worse than the disease makes me feel!

Thank you again my fellow crohnie's for being so supportive and knowledgable!

Tigerpants you poor thing! Sounds like you're having a bad time

Just wondering like some people have said before have you had steroids? Pentasa is a drug to maintain remission not induce remission, so if you're having a flare up you need something to get you out of the flare in order for pentasa to do its thing.
But like you said, you may be allergic, but don't rule out the need for something else completely.

Hope you're okay and you get sorted soon <3
xxxxxx

Hey Vicky

Yeah i had steriods about 2 months ago before i started taking any other meds to clear up what the GP said was a flare up, i finished the weeks course and then maybe a week later was put on the Pentasa 4g dosage.

Sounds like your not having much fun either hun, hope your flare up disappears quickly! Damn pesky crohns!

Big hugs to you
xxxxxxxxxx