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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Have we met before?!


07-09-2012, 09:52 AM   #1
crag
 
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Have we met before?!

Hello again all, long time no speak!

Thought I would update you all as to my current state of affairs. Still feeling much better than before my exploratory surgery but by no means 'right' or 'normal'. Still having a host of issues and have passed mucus and blood on two occasions in the last fortnight. Most recently this morning after consuming some fresh orange juice and a handful of grapes. Don't think that these could have gone through me so quickly however, so still as confused as ever!
Have decided that I do not want to go back to Peterborough hospital as they were dismissive of my symptoms beforehand, I had to beg for my surgery and was made to feel it wasn't worthwhile. Then they found the scar tissue and bowel adhesions but were happy to say it's just one of those things despite me still suffering with similar symptoms.
I now have a referral to Addenbrookes hospital on the 7th August so have renewed hope that they will treat me with some care and compassion. If I end up with the same 'cause unknown' diagnosis then I will have to deal with that then, not giving it too much thought for now.
That's about it really, I'm not going to list all my current problems as there are many, and I'm sure people's eyes are already straining reading this!

Hope that life has been kind to you all since I've been away, or that you're at least managing to cope with whatever it is throwing your way.

Take care and speak soon,

Craig
07-10-2012, 08:02 AM   #2
lexy92
 
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Hope you're feeling better soon... I went through about 12 doctors before I was taken seriously and finally diagnosed! Hope you get somewhere with the new hospital

Lexy
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07-11-2012, 10:26 AM   #3
crag
 
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Thanks for your reply Lexy, I knew I wasn't an isolated case by any means but always good to know others have been through similar ( or not actually!). I'm trying to up my fibre etc these last few days as I wanna give some traditional IBS remedies another try before my appointment in a few weeks. Simply because both myself and my GP think it's not IBS but I want to be able to say I've tried it again recently in case they decide to journey down that road initially. Have only been trying for the last couple of days but have gone from diarhoea with blood and mucus to not being able to go at all!

I have also read your own post in the support section; just wanted to let you know that you are in my thoughts. It's never easy to take when 'friends' seem to desert you but try not to take it too personally ( ironic and difficult!). You are the one who is the better, stronger person in this situation and will hopefully be able to say in a few years time that it has made you a stronger and wiser person as a result of it. It certainly doesn't take away the hurt right now but better that they showed their true colours so soon. I know you need them now but you have a good bloke there and the friends you make in the future will hopefully be a more compassionate bunch. You'll be able to quickly work out the ones who don't meet this criteria anyway.

Hope that you are having yourself as good a week as possible and that you have a smile on your face. It's never easy when you're suffering but we all have to try.

Craig
07-13-2012, 06:45 PM   #4
Cat-a-Tonic
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Hi Crag, I haven't been on a lot lately and must have missed your post. Glad to see you around, but wish you were doing better. I'm not familiar with hospitals in the UK but I hope the one that you got referred to is a good one and that they can provide you with answers and relief! Hang in there, and please keep us posted as to how your appointment goes. Fingers crossed for you that it goes well and the doctors there are good!
07-15-2012, 05:58 AM   #5
crag
 
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No worries at all Cat, good to hear from you whenever it may be. Thank you for your kind words, I'm still suffering but am thankfully better than before my op, just taking each day as it comes again and looking towards this new appointment. Addenbrookes hospital has a good reputation in the UK and judging from their website they have a good specialist team there. Ever hopeful that I might receive some longer term treatment that will be beneficial. GP made the decision not to try anymore IBS type meds which I was happy to go with as medication isn't cheap and was doing nothing for me!

How have you been keeping? I read your update thread so I'm guessing you're still quite happy in the position you are in at the moment? Don't worry if you haven't too much time to reply to this, I will update with a new thread once I've had my appointment in a few weeks. Take care and good to speak with you again.
07-15-2012, 01:21 PM   #6
StarGirrrrl
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Hi Crag, sorry to hear the op didn't give you answers/relief after all. That's great though about going to a new Hospital

You mentioned the cost of meds, may I point you here which tells you about pre-payment certificates/ cards. Mine is a lifeline!
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
07-24-2012, 03:13 AM   #7
crag
 
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Hi Star,

Good to see you again. many thanks for that link, I already have a pre pay form at home but haven't used it as I'm still not on any regular meds. Will definitely use it if and when I get to the root of this.

I have my appointment two weeks today so I'm praying that it's a good appointment and that they have something to say about everything. My previous hospital were happy to say the scar tissue and bowel adhesions are just one of those things, despite me having had no previous ops and still suffering with a multitude of symptoms.

Hope that things are ok with yourself? Always good to see a familiar face in here, I'll get on again soon but take care in the meantime and thanks again.
09-30-2012, 02:36 PM   #8
littlemissh
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Crag, long time no hear! How did your appointment go? Are you getting anywhere?

LMH
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Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
10-02-2012, 08:53 AM   #9
crag
 
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Hey LMH,

Good to hear from you and thank you for keeping me in your thoughts. I haven't been on here in a while so it's nice that I timed my reappearance so well!

I had my appointment on the 7th August and am feeling a little deflated to say the least. They didn't want to run any further tests and still attribute all my pains (now get shooting pains down my arms/ legs/ back too but seem to originate in my bowel) to a backup of stool in the bowel. They also explained away many other symptoms and have asked me to follow a diet which doesn't contain fibre.

I explained to them that I have been on a low residue diet for about a year and a half with no improvement. They also have asked me to take milk of magnesia twice a day as it's meant to be a mild laxative. Again explained that I predominantly have diarrhoea and that I have tried many laxatives in the past when I have been unable to go with no real effect.

They are still adamant that the scar tissue and bowel adhesions are 'just one of those things' and that they could return at any time regardless. As for me, I'm still massively better than before the exploratory op back in February but am still suffering daily. Apologies for my negative tones here but today is not a great day; plenty of pains, stabbings, throbbings and crampings as well as being unable to relax my belly due to increased pain.

They think I have IBS with a fibre intolerance and a delayed emptying right side colon. I have a follow up appointment in January but have begun to accept that this is now the way life will be. How I am meant to live a normal life I do not know; I eat nothing but 'safe' foods and still spend a lot of time on my back on the sofa.

I know that things could still be massively worse so I take solace in the fact that I am still able to go to work most days and that I have improved greatly since the op, no more waking at 5am in agony at least!

Hope that everything is as well as can be with you? I do think about you all here still but have lost my fight if I'm honest, and didn't want to burden people on here who are so much worse off than myself. Hope that life is being kind to you? If it isn't, well there's a shoulder here with your name written all over it!

Take care and speak soon,

Craig

Edit - Left a sentence half finished, should make sense now if you can decipher my waffle!
10-03-2012, 08:12 AM   #10
littlemissh
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Hello Craig,
Sorry your appointment didn't go as well as you hoped. Why don't you do a symptom diary with frequency and severity of your symptoms and when it prevents you from sleeping or working and take it to your next appointment. It may help them appreciate the level of difficulty you are having.

As for me, I have had a difficult 12 months with an ITU stay due to a perforated bowel and tube feeding for 10 months. I was seen locally and at Addenbrookes and eventually it was either a big op to remove my duodenum and part of my stomach, pancreas and small bowel or try humira for a period to see if effective. So I opted for Humira which I started in late february.

It was partially effective but had to be stopped twice due to septicaemia which was annoying. 4 weeks ago it was doubled to weekly and so far it is working so much better. I have managed to maintain my blood count with a transfusion for 4 weeks, my weight is up, I am feeling so much better. Best of all is that for the first time in 12 months I am hungry and permanently snacking so have actually got to 7 stone...yeh.
My gastro at the local is hoping my white count which is low doesn't get much lower so I can stay on this regime for another 2 months at least.

Unfortunately NICE says that I have to stop humira after a year due to funding so I hope this can be extended a little as I have only just started to be better on it. I will need my gastro to plead on my behalf ;-/
So anyway, at last things are looking up for me and hopefully for you too soon. Time seems to drag when you don't feel well.
10-22-2012, 06:53 AM   #11
crag
 
Join Date: Apr 2011
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Hello again and sorry for the delay, again!

I have tried writing symptom diaries in the past but nobody would ever go through them with me. I went back to see my GP on Thursday as the joint pains were quite severe as well as the 'usual' bits and bobs. He was pleased that I took a picture of my eye when it was inflamed and still suspects that something auto immune is to blame.

Recieved a call from Addenbrookes earlier and they have secured me an appointment for tomorrow. Am going to make a fresh list of symptoms tonight and write out a very brief diary of the bigger events.

Sorry to hear of your troubles too, sounds like you've been having some 'adventures' to say the least! Is the new regime still showing signs of benefit for you? I truly hope that it give you more and more relief and that a resection isn't therefore necessary.

I may well come straight on here tomorrow after the appointment depending how things go; when its a bad meeting or things are dismissed I just don't feel like talking about it anymore, start to think what's the point in trying but I know I need to keep the fight up for now at least.

Speak soon and take care in the meantime.
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