Re: if you don't want to heal icky details, please read no further

[Guest guest]

Elle,

My heart goes out to you.  I can't imagine what you are going through.  I was

recently diagnosed with lichens sclerosis, but unlike you, it causes me

little pain so far.  My tissues are very fragile and tear easily. My

gynecologist has prescribed a testosterone ointment. She said it will take at

least months to help, if it does.  I understand that it is an autoimmune

disorder.  I would imagine that the stress you are going through with you son

has helped bring on the flare.  I have been under a lot of stress lately because

of my husband's health.  My rheumatoid arthritis has flared.  I think stress

plays a big part in these disorders.  My prayers for an improvement in your

situation.  Youu can contact me privately if you like.

Hugs, Bonnie

________________________________

To: DS_Friends_Keshishian

Sent: Friday, December 5, 2008 7:20:48 PM

Subject: if you don't want to heal icky details, please

read no further

Warning graphic details... read no further if you're squeamish..

I am in the very most pain that I have ever, ever been in my life... and

there is at this point no end in site. If you'll remember, a few weeks ago

I had uncontrollable diarrhea that immodium AD, Lomotil, flagyl, heating

pads, etc. could not stop. Because one of my boys was totally out of

control and doing things to hurt the family, I was extremely stressed trying

to get the situation under control... staying up most of the night until we

got an alarm for his room, etc. I went to the doctor and asked for more

flagyl since mine was years old, but was flat denied it. I also asked for a

weekend's worth of anti-anxiety medication, thinking that if I could get

some sleep and let some of the stress go that my diarrhea would subside. I

was also flat denied a half dozen low-dose anti-anxiety pills that asked

for...and I ended up with a terrible hemorrhoid on the exterior and a

terrible fissure inside my rectum. ( I did have the hemorrhoid operated on

two weeks ago, and that is better.) I was FINALLY able to get the diarrhea

under control.

But... then a condition that I have called lichens sclerosis... which is a

noncatchy... but a very painful skin condition that usually affects the

perineal area went ballistic. It has flared so terribly that I can barely

sit down and my perineal area is horribly excoriated. My urethral opening

is so excoriated that I am losing my ability to control my urine. And, now

this condition of lichens sclerosis that I have suffered with for 10 years

has spread to my anal area. (Lichens sclerosis destroyed our sex life as

even a finger in my vagina tears and causes terrible fissures.)

Ever since my DS, I have between 4-6 bms a day. Often I am awoken between 2

and 3... when I suppose it is dinner that rushes through my system. I don't

know... it just has always been. It is my joy to actually sleep through a

nght.

Now I awaken between 2 and 3 and when the (very soft) feces tries to pass

through my anus, it retears the fissure, and because my anus is so

excoriated fromt he lichens sclerosa, I am literally in screaming pain. My

hind end is literally swollen shut. If I get a chance, I swallow a

hydrocodone on my way to the bathroom, but generally I don't have time. My

poor children have been awoken at least four nights this week with me

screaming at the top of my lungs because it feels like a knife is being

plunged into my ass. (All the while I am gritting my teeth desperately

trying not to react... but often without success.)

Does anyone have lichens sclerosa... and if you do, what do you do if you

have a severe flare up? For the first time, I was given a steroid ointment,

which they told me not to try because the excoriation will be enflamed by

it. Then today, they said to go ahead and try it.

I have been in the doctor's office 3x in the last week trying to somehow

cope with this. Now I am running a fever of 102 with it. This doctor I saw

was the most sympathetic and the most helpful of any doctor I have ever seen

for this condition. Usually, I am told to just put vaseline on the lichens

sclerosa... but it just irritates it more. Laf, this doctor called up a

gynecologist and he said between using the steroid ointment first thing in

the morning, that I should spread crisco throughout the area. I have tried

that tonight and it seems to actually help a little... and thank God, a can

of crisco is cheap.

However, when the doctor said that we were basically (other than starting

the steroid ointment and crisco), we weren't going to change the regimen. I

totally lost it. I started sobbing uncontrollably in her office. She then

prescribed ativan (anti-anxiety medication). .. with the hopes that it will

reduce the spasms in my rectum. I'm supposed to be putting suppositories up

there, but tonight as hard as I struggled, I could not get one passed my

closed off rectum. This one was refrigerated. The next one will come out

of the freezer.

I am taking sitz baths, which seem to offer a small amount of relief, but

not much.

Has anyone struggled with this? Does anyone have any suggestions? On a

scale of 1-10, this is a 20 as far as pain goes. I could not even take my

kids to school today. I didn't pick them up either. I didn't cook dinner.

All I'm doing is trying to get through the day. I would have a dozen DS

surgeries rather than suffer this misery. I've had two kidney stones... now

maybe they were not as severe as they could be, I don't know... but I would

take a kidney stone for the rest of my life if I could clear this up.

Sorry for the whining, but I am physically in terrible trouble...

Elle

[Guest guest]

Elle, I feel so bad for you!  I had exteme poo isssues for the first few months

(now I have a hernia from pushing!!). But I found a fiber bar that has worked

wonders. I so hope some of the remedies help give you relief. Maybe one of the

old timers (lol) have some ideas.

Subject: if you don't want to heal icky details, please

read no further

To: DS_Friends_Keshishian

Date: Friday, December 5, 2008, 7:20 PM

Warning graphic details... read no further if you're squeamish..

I am in the very most pain that I have ever, ever been in my life... and

there is at this point no end in site. If you'll remember, a few weeks ago

I had uncontrollable diarrhea that immodium AD, Lomotil, flagyl, heating

pads, etc. could not stop. Because one of my boys was totally out of

control and doing things to hurt the family, I was extremely stressed trying

to get the situation under control... staying up most of the night until we

got an alarm for his room, etc. I went to the doctor and asked for more

flagyl since mine was years old, but was flat denied it. I also asked for a

weekend's worth of anti-anxiety medication, thinking that if I could get

some sleep and let some of the stress go that my diarrhea would subside. I

was also flat denied a half dozen low-dose anti-anxiety pills that asked

for...and I ended up with a terrible hemorrhoid on the exterior and a

terrible fissure inside my rectum. ( I did have the hemorrhoid operated on

two weeks ago, and that is better.) I was FINALLY able to get the diarrhea

under control.

But... then a condition that I have called lichens sclerosis... which is a

noncatchy... but a very painful skin condition that usually affects the

perineal area went ballistic. It has flared so terribly that I can barely

sit down and my perineal area is horribly excoriated. My urethral opening

is so excoriated that I am losing my ability to control my urine. And, now

this condition of lichens sclerosis that I have suffered with for 10 years

has spread to my anal area. (Lichens sclerosis destroyed our sex life as

even a finger in my vagina tears and causes terrible fissures.)

Ever since my DS, I have between 4-6 bms a day. Often I am awoken between 2

and 3... when I suppose it is dinner that rushes through my system. I don't

know... it just has always been. It is my joy to actually sleep through a

nght.

Now I awaken between 2 and 3 and when the (very soft) feces tries to pass

through my anus, it retears the fissure, and because my anus is so

excoriated fromt he lichens sclerosa, I am literally in screaming pain. My

hind end is literally swollen shut. If I get a chance, I swallow a

hydrocodone on my way to the bathroom, but generally I don't have time. My

poor children have been awoken at least four nights this week with me

screaming at the top of my lungs because it feels like a knife is being

plunged into my ass. (All the while I am gritting my teeth desperately

trying not to react... but often without success.)

Does anyone have lichens sclerosa... and if you do, what do you do if you

have a severe flare up? For the first time, I was given a steroid ointment,

which they told me not to try because the excoriation will be enflamed by

it. Then today, they said to go ahead and try it.

I have been in the doctor's office 3x in the last week trying to somehow

cope with this. Now I am running a fever of 102 with it. This doctor I saw

was the most sympathetic and the most helpful of any doctor I have ever seen

for this condition. Usually, I am told to just put vaseline on the lichens

sclerosa... but it just irritates it more. Laf, this doctor called up a

gynecologist and he said between using the steroid ointment first thing in

the morning, that I should spread crisco throughout the area. I have tried

that tonight and it seems to actually help a little... and thank God, a can

of crisco is cheap.

However, when the doctor said that we were basically (other than starting

the steroid ointment and crisco), we weren't going to change the regimen. I

totally lost it. I started sobbing uncontrollably in her office. She then

prescribed ativan (anti-anxiety medication). .. with the hopes that it will

reduce the spasms in my rectum. I'm supposed to be putting suppositories up

there, but tonight as hard as I struggled, I could not get one passed my

closed off rectum. This one was refrigerated. The next one will come out

of the freezer.

I am taking sitz baths, which seem to offer a small amount of relief, but

not much.

Has anyone struggled with this? Does anyone have any suggestions? On a

scale of 1-10, this is a 20 as far as pain goes. I could not even take my

kids to school today. I didn't pick them up either. I didn't cook dinner.

All I'm doing is trying to get through the day. I would have a dozen DS

surgeries rather than suffer this misery. I've had two kidney stones... now

maybe they were not as severe as they could be, I don't know... but I would

take a kidney stone for the rest of my life if I could clear this up.

Sorry for the whining, but I am physically in terrible trouble...

Elle

[Guest guest]

Elle, I've been in your shoes several times since the DS. You need to call

and talk with Dee - she told me what to do and it worked, but I can't

remember what it was. I do know that it didn't involved medicine of any type

or any ointment at all. It was something simple. Within a couple of days the

pain was gone. Dee suffered the same malady many times, so is the expert on

this.

I was at that scream stage. It felt as if I had open wounds and someone had

poured salt into the wounds.

So, Call and talk with Dee. You'll need to telephone the hospital and ask to

be transferred to her line.

[Guest guest]

i don't knowif I have had the same thing,but from time to time I'll be in pain

aroung my anus. I take ice , put it in a bag and put it on my rear end. That

helps me.

Diane

Subject: [DS_Friends_ Keshishian] if you don't want to heal icky details, please

read no further

To: DS_Friends_Keshishi anyahoogroups (DOT) com

Date: Friday, December 5, 2008, 7:20 PM

Warning graphic details... read no further if you're squeamish..

I am in the very most pain that I have ever, ever been in my life... and

there is at this point no end in site. If you'll remember, a few weeks ago

I had uncontrollable diarrhea that immodium AD, Lomotil, flagyl, heating

pads, etc. could not stop. Because one of my boys was totally out of

control and doing things to hurt the family, I was extremely stressed trying

to get the situation under control... staying up most of the night until we

got an alarm for his room, etc. I went to the doctor and asked for more

flagyl since mine was years old, but was flat denied it. I also asked for a

weekend's worth of anti-anxiety medication, thinking that if I could get

some sleep and let some of the stress go that my diarrhea would subside. I

was also flat denied a half dozen low-dose anti-anxiety pills that asked

for...and I ended up with a terrible hemorrhoid on the exterior and a

terrible fissure inside my rectum. ( I did have the hemorrhoid operated on

two weeks ago, and that is better.) I was FINALLY able to get the diarrhea

under control.

But... then a condition that I have called lichens sclerosis... which is a

noncatchy... but a very painful skin condition that usually affects the

perineal area went ballistic. It has flared so terribly that I can barely

sit down and my perineal area is horribly excoriated. My urethral opening

is so excoriated that I am losing my ability to control my urine. And, now

this condition of lichens sclerosis that I have suffered with for 10 years

has spread to my anal area. (Lichens sclerosis destroyed our sex life as

even a finger in my vagina tears and causes terrible fissures.)

Ever since my DS, I have between 4-6 bms a day. Often I am awoken between 2

and 3... when I suppose it is dinner that rushes through my system. I don't

know... it just has always been. It is my joy to actually sleep through a

nght.

Now I awaken between 2 and 3 and when the (very soft) feces tries to pass

through my anus, it retears the fissure, and because my anus is so

excoriated fromt he lichens sclerosa, I am literally in screaming pain. My

hind end is literally swollen shut. If I get a chance, I swallow a

hydrocodone on my way to the bathroom, but generally I don't have time. My

poor children have been awoken at least four nights this week with me

screaming at the top of my lungs because it feels like a knife is being

plunged into my ass. (All the while I am gritting my teeth desperately

trying not to react... but often without success.)

Does anyone have lichens sclerosa... and if you do, what do you do if you

have a severe flare up? For the first time, I was given a steroid ointment,

which they told me not to try because the excoriation will be enflamed by

it. Then today, they said to go ahead and try it.

I have been in the doctor's office 3x in the last week trying to somehow

cope with this. Now I am running a fever of 102 with it. This doctor I saw

was the most sympathetic and the most helpful of any doctor I have ever seen

for this condition. Usually, I am told to just put vaseline on the lichens

sclerosa... but it just irritates it more. Laf, this doctor called up a

gynecologist and he said between using the steroid ointment first thing in

the morning, that I should spread crisco throughout the area. I have tried

that tonight and it seems to actually help a little... and thank God, a can

of crisco is cheap.

However, when the doctor said that we were basically (other than starting

the steroid ointment and crisco), we weren't going to change the regimen. I

totally lost it. I started sobbing uncontrollably in her office. She then

prescribed ativan (anti-anxiety medication). .. with the hopes that it will

reduce the spasms in my rectum. I'm supposed to be putting suppositories up

there, but tonight as hard as I struggled, I could not get one passed my

closed off rectum. This one was refrigerated. The next one will come out

of the freezer.

I am taking sitz baths, which seem to offer a small amount of relief, but

not much.

Has anyone struggled with this? Does anyone have any suggestions? On a

scale of 1-10, this is a 20 as far as pain goes. I could not even take my

kids to school today. I didn't pick them up either. I didn't cook dinner.

All I'm doing is trying to get through the day. I would have a dozen DS

surgeries rather than suffer this misery. I've had two kidney stones... now

maybe they were not as severe as they could be, I don't know... but I would

take a kidney stone for the rest of my life if I could clear this up.

Sorry for the whining, but I am physically in terrible trouble...

Elle

[Guest guest]

Go to a store that sells sex toys, The product is called anal ease, it

is a lidocain pain reliever, it will work, you can also ask the Dr. for

nitroglycerin cream for the rectum it will help ease the pain as well as

heal the fissure.

Best of luck to you,

Renie

Has anyone struggled with this? Does anyone have any suggestions? On a

scale of 1-10, this is a 20 as far as pain goes. I could not even take

my

kids to school today. I didn't pick them up either. I didn't cook

dinner.

All I'm doing is trying to get through the day. I would have a dozen DS

surgeries rather than suffer this misery. I've had two kidney stones...

now

maybe they were not as severe as they could be, I don't know... but I

would

take a kidney stone for the rest of my life if I could clear this up.

Sorry for the whining, but I am physically in terrible trouble...

Elle

[Guest guest]

Thank you to everyone who sent me supporting responses. It soothed my soul

and maybe my hiney a little as well! I tried nearly everything suggested to

me by the doctors and everyone... and somehow amongst them, something is

working. I am still in pain, but I have now passed the point of screaming.

Gene told me this morning that he was afraid someday he was going to be

awoken by the sound of a gunshot going off. I have to admit, the pain was

so great that if I had not had four small kids counting on me... that the

thought probably would have been a real possibility. It's funny, because I

actually think I can withstand a lot of pain, but what I have learned is

that I can stand aching... even terribly deep aching. I can withstand some

pretty difficult kidney stone pain... but sharp stabbing pains from the

inside that I have no means of assauging until 20 minutes go by after I take

a pain pill... that I really struggle with. No... it is beyond me.

I have no clue how an individual survives torture. It makes me realize what

a truly strong person McCain and other prisoners of war are. If they

had offered me a free ticket to get out of torture, but I would have had to

leave comrades behind, I can't imagine how I would have said, " No... I'll

stay and let you torture me some more. " I voted for McCain... I don't

know if he would have been a great President or not. What I do know is that

he is a better human being than I am and he is a great American.

Thank you for your prayers and love. I know that I have survived what was

one of the most difficult episodes I could imagine. I am sure some may

think I'm being overly maudlin about this, but as Gene said, he really

worried for my sanity when even with two hydrocodones in my system, I

screamed in pain for 7 hours.

I feel like I have a whole new lease on life.

Elle

RE: if you don't want to heal icky details,

please read no further

Go to a store that sells sex toys, The product is called anal ease, it

is a lidocain pain reliever, it will work, you can also ask the Dr. for

nitroglycerin cream for the rectum it will help ease the pain as well as

heal the fissure.

Best of luck to you,

Renie