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new and exhausted!

Postby ellee » 15 Feb 2015, 14:58

Hi all!

I'm 22, female and have been struggling with a chronic AF for 3 years now (i don't know why it's taken me this long to vent about it here). It started at university when I had a very poor diet and lifestyle and has been one very long road ever since then. It took me about 6 months to even visit the doc and since then I have tried all the recommended prescription creams/home remedies and most recently botox. Unfortunately that did very little for me and at my last visit to the doctors I was basically told in so many words to go and deal with it myself. Hooray.

As i'm sure most long term sufferers know, the biggest problem for me is not healing the fissure - but keeping it healed. I've been on movicol sachets for the last 2 years, 1 - 2 a day because i really struggle to avoid constipation, but i don't want to be on them forever. If i even come off them for 2 days i seem to become constipated almost immediately, despite being so careful with my diet and drinking tonnes of water, and then the AF returns and I'm back to square one. I know the longer I keep taking movicol the harder it will be to come off it, but i have no idea where to even begin?

I've been advised against surgery due to my age and the complications it can create further down the line, but I'm starting to feel like nothing else is going to help! At this point I will try anything - does anyone have any home remedies for the AF and/or constipation that worked for them? Have any women of a similar age had the surgery or is it perhaps worth trying a second round of botox?

I'd like to say I'm comfortable discussing all this with a doctor but nearly every one I've seen about this has been very unsympathetic and quite condescending, offering no decent advice besides 'drink lots of water' or just upping the amount of movicol I take. I'm just so exhausted now with putting so much energy into trying to treat this and having a doctor talk to me like I've not been trying at all.

I was also wondering what other symptoms people have found associated with an AF? Sometimes when the pain is really bad I get some fever symptoms like fatigue and sensitive skin, has anyone else experienced this?

Thank you in advance for reading this big rant and any suggestions you might have!
ellee
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Re: new and exhausted!

Postby owmybum » 16 Feb 2015, 12:35

Hi ellee.... And welcome to the board.

I'm sorry to hear you have been suffering for so long, and that the health professionals who are treating you don't get the emotional strain involved in dealing with the agony of fissures.

Have you had any pressure tests done? Could you ask your dr to refer you to a different CRS... Who could re- evaluate your situation and hopefully give you the time and compassion you need right now?

I'm sorry I can't give you an answer on the movicol front. I take it myself, and can't forsee a time I will be able to come off it, having a long history of constipation and sluggish bowels.

Has any one suggested why your fissure is not healing?

I can relate to your other symptoms too. I think the whole toll of living with a chronic fissure can cause a whole host of physical anomaly s ..... I think down to the anxiety, the diet etc.... Like you say.... It's exhausting!!

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: new and exhausted!

Postby ellee » 18 Feb 2015, 16:01

Thanks for your reply!

I have just moved for my new job so I'm planning to register with a new doctor here and just start over, hopefully this time with more success. I wish my previous doctors could have given me some indication of why I was struggling to heal so badly, but felt like I just had to diagnose myself half the time. Last time I went in I had some questions as the bleeding had been heavier than normal and was concerning me, so I was hoping to get an exam, but instead the doctor I spoke to acted like my even being there was a huge inconvenience and wanted to get the appointment over asap. Not very reassuring...
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