My (unfinished) story!

Hi

My names Laura, Im 26 and my problems started with my tummy when I was 14/15.

2004 -I didn't actively try and get help till I was 17...I had a flexible Stigmography (SP??) and they diagnosed it as IBS. My tummy settled (ish) for a few years but it was never normal.

2007- Around age 20/21 I started getting very poorly again, blood in my poo, pain, loosing weight etc...more Flexible Thingys aswell as a colonoscopy showed one ulcer..they then diagnosed it as UC....I was prescribed all sorts of foam enemas, asacol and steriods...nothing worked really over the years. They then mentioned Ulcerative Proctitis.

2008/2009- I had a my first baby at the age off 22 and my 2nd at 25 (shes nearly 7 months ) when pregnant with my 1st I began pregnancy at 11.5 stone and finished at around 9 (due to UC making me VERY ill) after having him I continued to be ill and went down to 8 stone.

(2009-2010)I moved hospitals and they gave me another colonoscopy, a barium xray and the tube that goes down your mouth..they found hardly any inflammation (help!) but continued me on asacol.

2012 and pregnant with my 2nd bubba, they couldnt do any invasive things but the new consultant I saw believed me to have 'solitary rectul ulcer' syndrome and told me to drink ALOT and change my diet...he said it involved me being constantly constipated- and ignored me when I said I have the complete opposite problem!

ok november 2012- no longer pregnant- I have been VERY ill again, lost 7lbs in 2 weeks, lots of blood and a ridiculous amount of pain all the time. Feel like I constantly have the flu, aching joints etc.. Anyway went for an emergency appointment on the 12th of november..he was kind enough to put a finger up there and found a lump...so that day had a xray, the next day another Flexible tube thingy and wednesday a CT scan. The tube showed lots of inflammation and many, many lumps etc...CT scan showed same thing so booked in for an MRI which I had 2 days ago.

I am now waiting for the results and I am in SO much pain. My partner has had to take leave off work (hes a pe teacher) to look after our two children. I am weak, have big black bags under my eyes, pale, No medication works and im just stuck. I cant take steriods as I suffer from manic depression so the whole state is awful really...

I think I have had a few more tubes and tests but I honestly cant remember them all If im honest...

Well done if you got this far! Sorry for my moan

laura xxxx

Hiya Laura
and welcome

You poor thing, we understand, we really do!
Your symptoms are a mirror image of my friend's, she is soooooo much better now, into her 18th month of Infliximab,(UK) Remicade (USA) she has gained her weight, and every symptom has ceased.
You need to talk to your gastro, NICE guidelines dictate that when all meds have failed, you will qualify for this med, but it's a postcode lottery and it depends on your Primary Care Trust.
Check out our Remicade Club here
http://www.crohnsforum.com/forumdisplay.php?f=58

Don't be fobbed off with the old IBS (stands for It's Bull Shit)
You DO NOTbleed with IBS, scream for a better meds regime!
Good luck Laura, any questions just holler!
Lotsa luv
Joan xxx

Hi, Laura! Welcome to the forum.

I'm sorry to hear you've had to go through so much. Are you currently taking any medications, and have you tried anything other than the Asacol? There are quite a few more medications to treat UC and Crohn's, so there's hope!

Please let us know what you learn from the test results!

Laura,
keep your head up. There is hope. I've read so many on here are in remission, so we can get there. To help alleviate the pain until doc gets ya on something, try a hot water bottle or heating pad. Even soaking in hot tub of water can help some. Stay strong, prayers are with you. Muah- hugs-

Thanks so much for your replies !
They have FINALLY said its crohns and until my next hospital appointment in two weeks I have been put on budesonide as I cant take normal steriods, Aswell as the pentasa.

I have now gotten to that stage where you can longer eat, My intestines just cant tolerate food of any kind. I have flared before but nothing like this, ever. Ive never known such pain and joint ache xx

I think my Entocort® ( budesonide) was my life savor. It at least slowed my bleeding n diarrhea from 22 times a day to 8. Doesn't quite cut it for pain control though. Have you spoke with your dr. About something to help with that? - hugs-

acheallova said:

I think my Entocort® ( budesonide) was my life savor. It at least slowed my bleeding n diarrhea from 22 times a day to 8. Doesn't quite cut it for pain control though. Have you spoke with your dr. About something to help with that? - hugs-

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Ive only taken two tablets and noticed a difference...I thought it would take a while to work? Dont get me wrong..im still going to the toilet loads etc but its not as urgent or as much as it was yesterday xxx

Its wonderful that you feel as if it is starting to work. Hopefully it will continue to improve your symptoms, not that it will cure it at all, but can provide some relief if it works!

acheallova said:

Its wonderful that you feel as if it is starting to work. Hopefully it will continue to improve your symptoms, not that it will cure it at all, but can provide some relief if it works!

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They have also prescribed tramadol for the arthritis pain, I dont like that too much. Made my throat funny and given me a headache xx

I'm not a huge fan of tramadol myself. It's usually first line pain treatment before narcotics since most docs are "afraid" of causing "addiction". Tramadol has a lot of undesirable side effects. Keep a logbook of how you feel, pain etc... while taking it and make sure your doc knows. - hugs-

acheallova said:

I'm not a huge fan of tramadol myself. It's usually first line pain treatment before narcotics since most docs are "afraid" of causing "addiction". Tramadol has a lot of undesirable side effects. Keep a logbook of how you feel, pain etc... while taking it and make sure your doc knows. - hugs-

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They have given me zapain in the past which I believe is a narcotic (not sure...) but its stopped working :s tramadol does sweet FA lol xx

Good to hear! Glad its working for you. - hugs-