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Down here below

Postby rio » 06 Dec 2013, 16:47

I am using the title of the beautiful spiritual song Down here below by Abbey Lincoln to start this thread.
"For there are wounds and scars to show
Livin' here down here below... ". http://www.youtube.com/watch?v=GYZSCsFbmn4

I wish I was religious, it surely helps to cope easier with challenges.

It is a hard time for me. In addition to growing pain I had a bad encounter with my GP doctor two days ago. She is my personal dr, only for few months now, as in this situation I needed someone to be very near where I live and had to cancel my previous dr due to distance. Soon I started to suspect she is not very good, that she acts impatient, do not listen to patient and I was planing to switch to another dr. as soon as possible. But I was convinced that if I am polite and calm, that nobody can have a reason to act against me and I could not imagine a doctor can be so unethical. I came to get another referral to CRS. She stated that AF is no big deal and it should be gone by now. I was trying to explain my troubles, but she cut my words and stated that I look so poor (in her own words "you are fading before my eyes") because I am not eating properly, am too sensitive, imagining illness, worry to much, so I can not sleep properly and that she will give me some sleeping pills. I wanted to explain that resting and sleeping are for me the only "activities" I enjoy lately and that I have some tranquilizers left that did nothing good to me. I wanted to tell some more about my pain in order to inform her but in vain, she would not listen and she said: " if you do not need pills you are not ill and do not need a referral to CRS" and that I just want connivance !??? She was really mean.
I tried to stay as calm as possible and told directly I am shocked with her behaviour and that her offer was improper and I am obviously forced to find myself another dr.. She agreed it would be better for me to go to another dr next door and said that that other dr. is completely different person as she is.
I was deeply insulted, angry and I felt so hopeless, so I burst in tears on my way out. I could not stand another look at her. I cried all day feeling so helpless. I wish i would not, but in this state I am much more prone to annoyance and it does not help with recovery. I called Patient s rights ombudsman and told about how she wants to trade pills for a referral and how she insulted me with insinuation that I am taking advantage to go to another CRS. Ombudsman - she is a woman - said that something like that should not happen and if I wish to report an offense. But I was so schoked and disappointed that I just did not have strenght to do that right then. And I probably will not because I just not want to deal with that stupid bitch any more, try to forget about it and will concentrate on my recovery.
I went to that another dr. to inform myself, but she is ill herself and will not be present much in the future, so she expressed a concern that I might end with that first one (I say bitch) again when she will be missing. So I went on the bus today to see a lovely doctor that I knew before, to ask him if he could take me, waited for an hour, got a warm welcome, but he is 120% full and looking for retirement soon, so this option is off to.
I came home with more burning and pain than usual, my back hurts along with fissure and I am so exhausted.
Last edited by rio on 06 Dec 2013, 17:17, edited 2 times in total.
Disabling burning, drilling pain in anal area for almost a year, started after UT infection. Small anal fissure diagnosed, turned out it is probably not the cause of pain, MRI shows no inflammation or fistula. Grateful to forum members for support.
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Re: Down her below

Postby Scientist2516 » 06 Dec 2013, 17:01

Rio, that is awful, terrible. I can't believe somebody who calls herself "doctor" could be so ignorant and unfeeling.
It makes me so angry when I hear about doctors saying AFs are no big deal. Truthfully, I think nobody can really know unless they've experienced it, but a real doctor should at least know not to belittle anybody's pain, no matter what.

Could your nice doctor at least refer you to a CRS, since this ridiculous woman won't refer you?
Please take very good care of yourself. You deserve rest and comfort - I hope you can get it. I hope you feel better very soon................
:smilyhug:
Nifedipine/lidocaine, no help
Diltiazem, effective, but caused major rash
Nitroglycerine, effective.
Topical estrogen for final healing.
Gentle heat to bottom - pain relief, muscle relaxant
Kondremul mineral oil
Time - lots of time.
Status - Healed!
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Re: Down here below

Postby rio » 06 Dec 2013, 17:16

Thank you very much for your reply Scientist. I am without personal dr. at the moment and will probably wait for that dr. who is off ill at the moment (it is expected she will be back till 16.12.. The nice old dr. can not refer me, because there is a rule that I must sign in with him first, but he is so full that we can not do that. A new patient can sign in only if the doctor in not "full" yet.
:afsmile:
Last edited by rio on 06 Dec 2013, 17:29, edited 1 time in total.
Disabling burning, drilling pain in anal area for almost a year, started after UT infection. Small anal fissure diagnosed, turned out it is probably not the cause of pain, MRI shows no inflammation or fistula. Grateful to forum members for support.
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Re: Down her below

Postby jr2 » 06 Dec 2013, 17:18

rio

I too am so sorry to hear this. As if the pain isn't hard enough to cope with, along with the accompanying stress and anxiety (and how hard it can be to even get yourself to the doctor), the worst thing that can possibly happen is to be met with someone who dismisses your pain and is of no help in furthering a plan for your care. It's one thing when a physician just doesn't know how to help. It's quite another to actually do harm to a patient seeking care.

For today, you need to just take good care of yourself, receive all the love and support you can from us and your support system. Do relaxing things for yourself. Bath, music, candles, movie, whatever helps you to get better balance back into your mind and body again.

Then, it will be time to formulate what you can do next to get your care back on track again.

We're here to support, encourage, scream, hug, and hope with you.

big hug x x
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Re: Down here below

Postby owmybum » 06 Dec 2013, 18:38

I'm so sorry you were treated so badly rio..... We are all here to support you.

:smilyhug:

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: Down here below

Postby whoknew » 07 Dec 2013, 06:07

Hi Rio,

Your experience sounds terrible! I'm so sorry you're having such a hard time finding help with this horrible condition! Whoever says an AF is not a big deal has clearly never had one, and is in the wrong for judging your pain that way. Your doc sounds like a real jerk. I hope you find someone new, and soon!

(Hugs)
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Re: Down here below

Postby rio » 07 Dec 2013, 07:09

Your kind replies give me strenght and I am so grateful for support. It helps so much to tell and to receive a reply.

I started this thread gloomy and influenced by a lot of pain and a bad dr. expierience. I meant to start a diary or some periodical reports to inform you what I am doing, eating ... and how do I feel after using various ointments and supplements. And to tell about my hopes and ups and downs.

Like many of us, I think, I get relief from pain during sleep and i wake up in the morning wit much less pain.The inflammation and pain progress during the day usually parallel with the amount of sitting, standing walking or doing anything, so I have to rest a lot and lay down. I do not go to work as I was working from home, but since I am ill, I received only few small cases to work on (and much less income, use my retirement savings and live on a budget).
In the morning comes BM and aftercare. I have not had very painful BMs since, just some bruised and burning feeling, maybe because my fissure is small, my spinchter is medium tight and I always have soft BMs. After the BM I clean myself with the shower and apply some coconut oil. I put one or two chunks and push it gently up to the anal canal to somehow clean it with oil. Then I apply a little chamomile coconut oil to help with the inflammation. I have to repeat it two or three times during the day. Sometimes i put some diaper rash cream with lidocaine on the outside and it helps usually to shrink the swollen skin tag and take some pain away. But not always! Strange with this condition is, that the same thing that may help few weeks, suddenly loose the efficacy, sometimes for all, sometimes only for a while and sometimes makes things worse.
Few days ago i tried to apply HEMP seed oil, first on the outside and I noticed how my perianal skin got normal colour instead of purplish and the skin tag shrinks. I apply it in the inside too. The pain subsided and I was happy. It works best if I lye and rest, but if I sit or move the pain and burning strike again.
I decided to stay off milk products again as much as I can (I had some activia in past days and my joint pain and headache are coming back).
I put some humble hope in hemp seed oil for now, I read how good it is for burns and wounds. It is without THC of course, cold pressed, meant for ingestion. If someone decide to take a try with it too, please report about it.
Disabling burning, drilling pain in anal area for almost a year, started after UT infection. Small anal fissure diagnosed, turned out it is probably not the cause of pain, MRI shows no inflammation or fistula. Grateful to forum members for support.
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Re: Down here below

Postby rio » 13 Dec 2013, 05:09

It is a hard time for me and as I read some other posts here I am not the only one at the moment. My condolence to all sufferers. There come moments (or better say hours) I think this will never end and pray for strenght to endure the torture.

Aloe does not work for me any more, coconut oil gives only little relief now, that is sad. I have really strong stabbing pain where the wound is, strong burning pain overall, hot an pulsing feeling in my tailbone and when I stay and walk a lower back pain that subsides when I rest. Sitting makes burning bad. When I lay down and let the air get down there I can see how skin tag shrinks and redness subsides, so I guess all would heal instantly if it would not be such a closed place.
I made an appointment with CRS on 18.12., I will pay privately rather than wait few weeks and ask him to make an operation as soon as it is possible.
It seems that some stuff I put down there to cure the wound acts like a miracle for the first day and then on the second day of use, the monster strikes back with more pain and burning. As some of us here, I too overdo on various ointments and preparations in hope to find relief, encouraged with good reviews from sales promotors (?). Or maybe fissures are so special - but still why so many happy reports about healing using this or that stuff?
I tried aloe arborescens fresh from plant instead aloe vera. It is said it is much more potent than aloe vera and its pulp is very bitter. It workes good for first day, but the next day it stings like mad.

I also had a bad experience with Proctis M suppositories (PROKTIS M-rectal ointment and suppositories PROKTIS-M. Medical devices are effective in: haemorrhoids (internal and external) restoring the lining of the anus or rectum after surgery rectal, pelvic irradiation or chemotherapy
inflammation of the rectum or pockets (proctitis, kriptitis)ulceration of the anus (anal old Raghad) fissures of the anus (anal fissure) Ingredients: natrium hialuronate, gotu kola, aloe vera and tea tree extracts, semisintehic tryglicerides.) but it burned me and I had the worst set back since I used only two pieces. I just do not understand why it is happening and I am so afraid that the operation will not help with that, since I developed so much sensitivity.
Disabling burning, drilling pain in anal area for almost a year, started after UT infection. Small anal fissure diagnosed, turned out it is probably not the cause of pain, MRI shows no inflammation or fistula. Grateful to forum members for support.
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Re: Down here below

Postby whoknew » 13 Dec 2013, 11:40

Hi Rio,

I'm sorry to hear you're struggling right now. For me, some days are good and some days are not good at all. I don't have any suggestions, just wanted to commiserate about how much having an AF sucks!!

Glad to hear you're going to the doctor next week! I hope they are able to offer a light at the end of the tunnel... no pun intended :)

Take care!
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