Because I just need vent my frustration and hopelessness!

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Re: Because I just need vent my frustration and hopelessness!

Postby Ever the Optimist » 08 Mar 2013, 16:37

Aw Sue,
I hope you get all this stuff sorted before your 30th too....It's been going on far too long for you but now things sound really positive. It's really interesting also to see how another consultant can have a totally different view on things and actually understand the need to get things thoroughly sorted. I'm sure another MRI plus an EUA will give your CRS all the information they need to get everything diagnosed (and treated) properly once & for all.
It is really great and positive to hear that the medication is really helping you with at least one of your complaints (one less pressure off your brain!)....
When do you have your MRI?....
For me, things are so much better I have to say! The fistula completely healed and everything is back to normal there. Unfortunately, my last EUA diagnosed internal piles which cause some irritation still - they are only small but I have been advised I can get them banded. Not sure about that or rushing into it just yet. I can't face the thought of more anal surgery right now! I need a break from it! The fissure itself is still there and I hope, still healing. It causes me very little grief these days but I still get an odd twinge now & again reminding me the area is delicate, so life long bowel friendly diet now and always!! It would be nice one day to get up and not have any bottom related aches or thoughts!! :)
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
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Re: Because I just need vent my frustration and hopelessness!

Postby Sue27uk » 30 May 2013, 06:19

ETO, I saw your post saying you were pretty much healed and I was sooo happy for you! Couldn't find it again so had to reply on my thread. Well, I had the MRI scan within 2 weeks of the appointment and, after my doctor chased it up, I had a letter telling me they have found a small fistula!! Same as you! So they want to do an EUA and open up the fistula at the same time to heal. They think this is what is causing my coccyx pain, as nothing else major has shown up. So I am awaiting a date for another EUA and that doing. If I'm honest I am feeling a little nervous about this op, but hopefully this will be sorted once and for all. I am hoping it happens in the summer hols coming up which will give me chance to recover and rest. I am back with the guy I went to privately but am back on the NHS for now. If this doesn't solve the problem I am going to go private again. I live in hope of being better for my 30th birthday!!!! To be honest things are much better than they were, just not completely right. Anyway, I hope to join you in the 'well again' club! I noticed Andy and Davo are sorted now so I think it might finally be my turn. Again, glad to hear you are well and able to get on with your life :D
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Re: Because I just need vent my frustration and hopelessness!

Postby Ever the Optimist » 30 Jun 2013, 05:21

Hi Sue, Image
I just found this post, sorry I nearly missed it but hope you pick up my response too because I've been wondering how you've been getting on for ages! It feels like months.
Firstly, it's great to read that things have picked up a LOT for you! Skin issues resolved and finally, you have resolution on the Coccyx pain!!! It must have been so frustrating to have been diagnosed with a Fistula on top of everything else, but honestly, if it's small and easily treatable with laid open surgery, it will heal SO much quicker than a fissure and very successfully too. Do you have a date through for that op just yet?? If treated soon, you will be feeling so much better by your 30th! Probably not 100% there, but MUCH improved.....To be honest, you must just be relieved that after months of not knowing that you finally have answers to your unresolved pain and discomfort. Cor - Yes, just like me!! and I'm doing absolutely fine these days - it really is your turn next to join the club!!! I could easily forget I ever had a Fistula - that's how successful the recovery is - the fissure, a different issue, and I know which I'd rather go for if given the choice of one of them!!....Although, "healed" there, the fissure reminders don't completely go away as new sensations surface with the scar tissue, but it's still nothing compared to the old, intensely painful days.
I am just really happy to read how far you've come and once you've got that Fistula sorted, how close you will be to getting it all sorted once & for all!
Please keep me updated - Would love to be here reading your steps to final recovery and there to share with you. It's SO good to hear from you again!!!! :D 
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
Ever the Optimist
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Re: Because I just need vent my frustration and hopelessness!

Postby Sue27uk » 21 Jul 2013, 11:37

Hey ETO, no more news as yet. I am still waiting for a date to come through. I have rung the hospital last week and am now on the cancellation list so if one comes up I'll be in the next day. I am ringing again this week as have been advised to keep on top of it. Have been waiting 4 and a half months now, the good old NHS eh?! If it doesn't happen soon I am going private again. Going back to my doctor this week to get him to c hase it up aswell. He has been fantastic so hopefully can get something done. Will keep you updated on what happens. Yes, I want to celebrate with you soon too!!! :)
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Re: Because I just need vent my frustration and hopelessness!

Postby Ever the Optimist » 21 Jul 2013, 15:13

Oh Sue,
Sorry to hear you are still waiting! You must be so frustrated with it all......
Did the fistula develop with an external opening or is it an internal tract that was picked up on the MRI? Was it purely the coccyx pain that made you realise something was amiss or were there other symptoms too??
Oh, I really hope you get that appointment through very soon, so they can sort you out once & for all.......
I hope you are not suffering too much in the meantime (but you have the holidays right??) so will that relieve you of some of the work pressure??....
Fingers crossed, that appointment gets sorted soon. It's a shame you can't get a referral to where I was treated in Coventry because the waiting lists were nowhere near as long as yours and the last time I went, I got in within 2 weeks of making the appointment (and that was on the NHS !) Take care :) 
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
Ever the Optimist
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Re: Because I just need vent my frustration and hopelessness!

Postby Please go-away! » 22 Jul 2013, 08:00

So sorry your waiting, do what ever you can, if you can't wait go private, the waiting list, in Canada isn't any better, I have a Gastro Doctor, but i made an appointment to see a CRS just for a consultation. Guess when, Feb/2014..oh well.
To ease the soreness(after BM) and my IBS, I made some ginger(fresh)fennel tea.
watch the live stream of the Royal baby..its taking my mind off of it.:) .......Image
I feel it's gonna be a girl.
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Re: Because I just need vent my frustration and hopelessness!

Postby Ever the Optimist » 23 Jul 2013, 01:02

I also thought "Girl" - How wrong were we??? LOL.
TBH, I'm kind of babied out with it all now......God help any other poor mite born at the same time on the same day!!!
(Sorry Sue, that wasn't helpful for you in anyway!!! x)
Chronic Fissure diagnosed December 2011
Healed by Diltiazem around Feb 2013
Anal Fistula followed burst abscess in June 2012
2 internal troublesome piles remain & suspected, but undiagnosed, ongoing Levator Ani type symptoms & flare-ups
Ever the Optimist
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Joined: 12 Apr 2012, 16:00
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Re: Because I just need vent my frustration and hopelessness!

Postby owmybum » 30 Jul 2013, 11:29

Have you heard anything yet sue??
OMB x
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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Re: Because I just need vent my frustration and hopelessness!

Postby Sue27uk » 13 Aug 2013, 12:45

Hello all, sorry not been on here for a bit. I predicted the baby's name - wierd!! Well I have kept ringing the hospital and finally got somewhere today. I have been swapped to a different consultant as they said that the guy I was with didn't do the operation. Not sure what they meant by that! Anyway my operation is on 12th September with a pre-op screening on 6th September. They're going to take blood tests etc, not quite sure why as I don't remember this before, maybe it was done and I just blanked it out. To be honest I'm not 100% sure what they are doing. I can't see an external opening but apparantly my GP could see a fissure by my coccyx. Well, a very tiny tear so I don't know if that is it and she was mistaken (it was the other doctor). According to my 4 line letter it says I have a 'fistula which needs to be opened up' and they will 'examine me thoroughly' whilst I am under. At my pre-op I intend to mention I have been suffering fissures for 2 and a half years now in the hope something may be done to sort that too! Possibly prepared to say if it needs LIS too then to go ahead. Only problem is I will be back at work when this happens but I am not going back too early, they will have to accomodate me. I have to prioritise myself this time. If this doesn't work I may go private again but taking it one step at a time. Taking the proper time to recover and doing what they say in the hope it works, if it doesn't I will cross that bridge when I come to it. Sorry about the late reply, I didn't get any email alerts for this message! Thank you for all the support guys. How is things OMB? Hope you are ok, and you too ETO. Please Go Away, Feb 2014 - gosh, how depressing!!! Hope you manage to get sorted soon. My advice, pester the docs, ask about cancellations etc. Good luck, let me know how it goes and how you all are :)
Oh yeah ETO. Remember when I said I wanted to be sorted for my 30th birthday, well it's on the 18th September so it may happen yet - who knows!! Cutting it a bit fine!
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Re: Because I just need vent my frustration and hopelessness!

Postby owmybum » 13 Aug 2013, 13:42

Thanks for the update sue. I too have been suffering for 2 1/2 years!! It's a long old slog isn't it!!
Only 4 more weeks to go ...... Fingers crossed its a success for you!!
OMB xxxxxx
Image 
fissure after hem banding and tag removal feb 11
Pelvic floor therapy
Diltiazem
Botox June 13
Nitro
Internal flap July 14
EUA and polyps removed Nov 14
Diagnosed with neuropathy Jan 15
Diagnosed with HS EDS type 3 (causes poor wound healing )
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