Just back from a hospital stay...long story - sorry :-(

[Guest guest]

Hi everyone! Thought I'd update you on where I've been lately. In the hospital

again...AND still no real answers! I'm getting real worn out and frustrated

about this. I went in through ER on Thursday night (3/7) with extreme abdominal

pain and bloating that made me look like I was going to deliver something. Just

touching my abdomen was exquisitely tender. They took regular flat plate x-rays

and a non-contrast CT. They found my colon to be dilated from 10 to 12

centimeters around...in other words, close to the bursting point! My primary

doc had just discontinued all my irritable bowel syndrome meds and cut down my

restless leg syndrome meds. He wouldn't continue to give me a prescription for

Percocet (to be used on an as-needed basis), so my rheumy gave me low dose

fentanyl (Duragesic) patches that are worn 72 hours straight and then replaced

with another patch. I feel this is helping somewhat in the " chronic pain "

category, but I thought I had that pretty much under control. Now I realize

that I was still actually " feeling the chronic pain " but ignoring it as best I

could. I also started on some pancreatic enzymes which have done a real number

on my digestive system. I feel like I'm possessed by an intestinal " alien " that

growls and talks constantly. The only way to stay out of severe pain right now

is to not eat...and of course that's going to cause more problems. I don't know

what to do. They admitted me early Friday morning and kept me until around

supper time on Monday night. Basically they were watching me and had the

surgical team standing by because they were worried about a bowel rupture from

the pressure within the colon. NO ONE had an answer! They gave me more enemas

than I thought humanly possible! However, the enemas didn't stimulate anything

to really " move " or " work right. " I asked when I was discharged if I had a

diagnosis, and they said " nope - we are not sure what's happening. " They were

hoping it was simple constipation, but I have gone everyday and diarrhea is more

of a problem (as it has been in the past for a very long time!). I don't think

I got very good treatment, but it was the weekend - not a good time for someone

with a very complicated medical history to be admitted. My specialists were

either gone or on vacation! I got stuck with the medical teaching staff. Of

course, they just all scratched their heads and couldn't figure out anything! I

got home and started to have another attack, but this time took 20 mg more of my

methylprednisolone. Passed a lot of gas; had a lot of grumbling and rumbling in

my entire abdomen, but the pain finally minimized. No one seems to be able to

put the picture that steroids seem to work almost instantly on this whole

abdomen swelling and extremely pain. I was almost totally passed out from the

pain! Glad my son has been staying with me, otherwise I might not have been

able to send you guys this email!

Anyone else on the fentanyl patch (or Duragesic patch)? Does it cause you any

constipation? I know narcotics can, and do, cause constipation; however, how

can they classify it as constipation if you're going every day? My colon was

mostly filled with air (to the point of spontaneous rupture!). I also

apparently suffer from fluid depletion even though I drink a lot of liquids

every day. They had IVs in going full blast!

I don't know what's going on guys...I'm really sort of scared this time. I've

been handling everything else up to this point pretty positively. The fact that

the " training staff " put down as a discharge diagnosis, " constipation, " causes

me real concern because I feel they're going to be looking in the wrong

direction until it's too late!

Anyone else have problems with fluid balance (either too dry membranes or

edema)? Is this a part of Stills? I think my digestive system shut down and

that's what caused the problem. But, of course, that's just my opinion, and I

can't prove it. I also still think it's the Still's causing inflammation so

great in my intestinal track that it prevents the muscles from contracting and

pushing the food along, as it's supposed to.

I've been fighting off depression over this, but I'm tired, hurting, and scared

that one of these attacks might not " allow " me enough time to get to the

hospital before my colon perforates or tears open, causing a very deadly

possible outcome. Does anyone know where I might find more information about

any of this? Does any of this ring a bell with anyone else? Could this be MS

instead of Stills?

Help...anyone!

Jul

[Guest guest]

Dear Jul,

I agree with you I don't think your getting the care you need for this

problem. I think your problem needs to be taken more seriously. I am sorry

to hear that you continue to suffer with these problems. This may be a

stupid question but are you seeing a Colon Specialist?

I pray that you will finally get some decent care for this problem. Keep us

posted. You are in my thoughts and prayers.

Love,

jatw@...

[Guest guest]

Jules, I meant to say, don't think your not going to be around. I am so

sorry I didn't read first and make sure it said what I meant !!! Please

forgive me. Melt

Re: Just back from a hospital stay...long

> story - sorry :-(

> >

> >

> > Jul, could any of this be related to the gastric bypass surgery you

had?

> >

> >

> >

> >

> >

[Guest guest]

Dear Jul,

I am very sorry that it took this long to respond to you, but I am far

behind in everything right now. I know that you went through quite an

ordeal at the hospital, and yes...it's so frustrating when you leave and you

don't have an exact answer. How are you feeling now Jul? I too have been

on the duresic patch a lot. I was put on it when I was in the hospital last

At first, it made me itch a little and then it calmed down. The day I was

to be released, my doctor came in to look at me and see if I was good to go

home. She gave me a whole exam and gave me a green light. When I stood up

to put my clothes on, I got a very sensation through my body and I felt like

almost fainting....a kind of floating feeling, kind of over-whelming. So

they sat me down right away. For hours, I didn't feel very good and I asked

them to remove the patch for me. They did and I felt perfectly fine after

that. The next day I was released, but got home and had tremendous pain

through my legs that was absolutely un-bearable, so I returned to the

hospital. This is when all that severe bruising was going on with me. I

sent the pictures to the Stills Site for everyone to see. The docs in the

ER had never heard of Stills, and at that point, my doc had diagnosed me

with Hibernian Fever Disease or Stills, but couldn't make a complete

diagnosis. So, to make a long story short, I had several injections of

Morphine and I was put on the patch again. That night, I tolerated it very

well, and wore it for a couple of days, and would change to another one.

Jul, my constipation either from the patch or all the meds in the hospital

was horrible. I remember trying to go to the bathroom and it was one of the

worse moments of my life. I was in agony and was literally jumping off the

toilet with pain. I think it has to do a lot with meds too, not eating

right when you are in a " flare " , because I know, when I am in a " flare " , I

have no appetite at all, but I feel that the patch had something to do with

it too. So, you are definitely not alone. My constipation was so horrible,

that I remember tearing and bleeding. I hope that they are watching you

very careful with your bowel. It does not sound good and sounds very

swollen. My mother has diverticulitis and gets the bad bowel syndrome too..

..do you have diverticulitis? I also have the restless leg syndrome too Jul.

It's horrible, but I take over the counter meds for it. Some nights, it

keeps me awake for hours. I cannot stand the pain and the spasms keep me

awake, but the aching feeling can be over-whelming too. I have had this

since I was a young girl. I was over-athletic and I think that it really

brought it on. Jul, please keep us up-dated about you, if you can...okay?

Know that everyone is thinking of you and I definitely " hear " your

frustrations and know how you feel. I am hoping by now, that you are

feeling some type of relief. Be well friend. Hugs

Love, Sue #2

[Guest guest]

Dear Jul,

I am very sorry that it took this long to respond to you, but I am far

behind in everything right now. I know that you went through quite an

ordeal at the hospital, and yes...it's so frustrating when you leave and you

don't have an exact answer. How are you feeling now Jul? I too have been

on the duresic patch a lot. I was put on it when I was in the hospital last

At first, it made me itch a little and then it calmed down. The day I was

to be released, my doctor came in to look at me and see if I was good to go

home. She gave me a whole exam and gave me a green light. When I stood up

to put my clothes on, I got a very sensation through my body and I felt like

almost fainting....a kind of floating feeling, kind of over-whelming. So

they sat me down right away. For hours, I didn't feel very good and I asked

them to remove the patch for me. They did and I felt perfectly fine after

that. The next day I was released, but got home and had tremendous pain

through my legs that was absolutely un-bearable, so I returned to the

hospital. This is when all that severe bruising was going on with me. I

sent the pictures to the Stills Site for everyone to see. The docs in the

ER had never heard of Stills, and at that point, my doc had diagnosed me

with Hibernian Fever Disease or Stills, but couldn't make a complete

diagnosis. So, to make a long story short, I had several injections of

Morphine and I was put on the patch again. That night, I tolerated it very

well, and wore it for a couple of days, and would change to another one.

Jul, my constipation either from the patch or all the meds in the hospital

was horrible. I remember trying to go to the bathroom and it was one of the

worse moments of my life. I was in agony and was literally jumping off the

toilet with pain. I think it has to do a lot with meds too, not eating

right when you are in a " flare " , because I know, when I am in a " flare " , I

have no appetite at all, but I feel that the patch had something to do with

it too. So, you are definitely not alone. My constipation was so horrible,

that I remember tearing and bleeding. I hope that they are watching you

very careful with your bowel. It does not sound good and sounds very

swollen. My mother has diverticulitis and gets the bad bowel syndrome too..

..do you have diverticulitis? I also have the restless leg syndrome too Jul.

It's horrible, but I take over the counter meds for it. Some nights, it

keeps me awake for hours. I cannot stand the pain and the spasms keep me

awake, but the aching feeling can be over-whelming too. I have had this

since I was a young girl. I was over-athletic and I think that it really

brought it on. Jul, please keep us up-dated about you, if you can...okay?

Know that everyone is thinking of you and I definitely " hear " your

frustrations and know how you feel. I am hoping by now, that you are

feeling some type of relief. Be well friend. Hugs

Love, Sue #2

[Guest guest]

Hi Sue#2,

Things are not going so well right now. I'm feeling really fatigued and the

abdominal bloating still seems to be there. I can resolve the pain and bloating

by taking an extra 20 mg of methylpred (which is all the doctors have as far as

options for me at this time). I'm trying to " endure " because that extra bolus

of methylpred almost DOUBLES my regular dose of 28 mg! For the first time in 5

years I'm noticing swelling in my face (probably due to the high methylpred

dosage). I have a lot of edema all over my body. The sweating attacks have

been awful. I carry around a towel because it literally feels like someone just

put me in a kettle of steaming water...the sweat just pours out of me. I then

end up extremely dehydrated. In the hospital they had IVs running in me

continuously (and fast) due to dehydration. No matter what I drink (and I try

to drink a lot of liquids!), I just seem to have more to sweat out! It's an

uphill battle.

My specialists' nurse practitioners are adamant that my hospital stay was for

constipation! I whole-heartedly agree! Why I'm producing so much gas, I don't

know. That could be from the pancreatic enzymes that I'm taking to try to get

my digestive system to break down food. I mean, it hasn't been functioning well

for some time. I'm on the lowest dose fentanyl (Duragesic) patch. My

intestines just couldn't contract well enough with all that gas extending them

beyond they're " stretching point. "

I'm not constipated because I'm going every day. Between my pancreatic

insufficiency and my liver enzymes now higher than they have ever been, next

Monday they are going to do some more specific blood work regarding the liver.

Apparently there is an autoimmune disease that effects the liver specifically.

The tests are showing that there is liver damage, and one of my docs is pushing

to get a liver biopsy done. That's the only real way they'll know what changes

are going on in the cells of my liver.

Geez, yes I have a lot of bruising and have problems with blood clotting. It's

my understanding that the liver has something to do with blood clotting. I'm

not sure what that is. They did mention diverticulitis and I'm scheduled to

have a colonoscopy the week after next. I don't know if I can handle the prep

for the test though. With my bypass, drinking the gallon of GI lavage solution

is going to be almost impossible. I gagged and threw up with sweats and

dizziness the last time I had to drink that stuff. That was before my abdominal

surgery. Now I have only a 4-tablespoon pouch of a stomach. I'm in such a

weakened state that I don't think I get through it. I'm going to try to find

some other alternatives.

My restless leg syndrome is quite bad. I feel like bugs are crawling all up and

down my legs. I can't sleep or sit still with the aching and " buzzy " feeling in

my legs. I take Klonopin for at night for this. This has helped tremendously.

Funny that you mention being very athletic in your younger years. I was a

dancer and women's self-defense instructor. I was very athletic and on the go

all the time. I can remember my mother yelling at me at the dinner table to

stop bouncing my legs. Sometimes now I just want to crawl out of my legs all

together.

The docs did mention diverticulitis (which is in the family). I suppose this

would show up on colonoscopy. My rheumy though wants my GI doc to do a liver

biopsy ASAP. Otherwise, without figuring what's going on there, they can't get

me back on the MTX. My hair has been falling out. Only when I've been on the

MTX did my hair STOP falling out! Guess I just like to be different. I only

took the MTX by self-injection into the thigh and had no adverse side effects

from it.

They did " discover " in the hospital that for some reason my blood sugars are

running abnormally low. Just another part of the puzzle, I guess!

I know you will all understand what I mean by " feeling that my body is going

down hill. " Nothing is making me feel better and bells are going off in my head

warning me to be more diligent about getting treatment soon. As least now, I do

have some medical staff that is listening, but even they admit what's going on

with me is over their head because it crosses specialties. Hard to tell which

symptom is from what condition.

I'm so fatigued and feel really depressed right now. I'm trying to hang in

their, but, of course, financial matters are also a source of stress right now.

I'm trying to support myself and my son on income that was specifically designed

for only one person to live on. Relief on many fronts seems to be not something

I can reach out and touch at this time.

Maybe tomorrow will be a better day...I hope so anyway. Thanks so much for

caring. It really is an emotional release to relate to others who know what

you're talking about! Thank you for your kindness!

Jul

(lilac_rose@... )

Re: Just back from a hospital stay...long story -

sorry :-(

Dear Jul,

I am very sorry that it took this long to respond to you, but I am far

behind in everything right now. I know that you went through quite an

ordeal at the hospital, and yes...it's so frustrating when you leave and you

don't have an exact answer. How are you feeling now Jul? I too have been

on the duresic patch a lot. I was put on it when I was in the hospital last

At first, it made me itch a little and then it calmed down. The day I was

to be released, my doctor came in to look at me and see if I was good to go

home. She gave me a whole exam and gave me a green light. When I stood up

to put my clothes on, I got a very sensation through my body and I felt like

almost fainting....a kind of floating feeling, kind of over-whelming. So

they sat me down right away. For hours, I didn't feel very good and I asked

them to remove the patch for me. They did and I felt perfectly fine after

that. The next day I was released, but got home and had tremendous pain

through my legs that was absolutely un-bearable, so I returned to the

hospital. This is when all that severe bruising was going on with me. I

sent the pictures to the Stills Site for everyone to see. The docs in the

ER had never heard of Stills, and at that point, my doc had diagnosed me

with Hibernian Fever Disease or Stills, but couldn't make a complete

diagnosis. So, to make a long story short, I had several injections of

Morphine and I was put on the patch again. That night, I tolerated it very

well, and wore it for a couple of days, and would change to another one.

Jul, my constipation either from the patch or all the meds in the hospital

was horrible. I remember trying to go to the bathroom and it was one of the

worse moments of my life. I was in agony and was literally jumping off the

toilet with pain. I think it has to do a lot with meds too, not eating

right when you are in a " flare " , because I know, when I am in a " flare " , I

have no appetite at all, but I feel that the patch had something to do with

it too. So, you are definitely not alone. My constipation was so horrible,

that I remember tearing and bleeding. I hope that they are watching you

very careful with your bowel. It does not sound good and sounds very

swollen. My mother has diverticulitis and gets the bad bowel syndrome too..

.do you have diverticulitis? I also have the restless leg syndrome too Jul.

It's horrible, but I take over the counter meds for it. Some nights, it

keeps me awake for hours. I cannot stand the pain and the spasms keep me

awake, but the aching feeling can be over-whelming too. I have had this

since I was a young girl. I was over-athletic and I think that it really

brought it on. Jul, please keep us up-dated about you, if you can...okay?

Know that everyone is thinking of you and I definitely " hear " your

frustrations and know how you feel. I am hoping by now, that you are

feeling some type of relief. Be well friend. Hugs

Love, Sue #2

[Guest guest]

Do you have an Internist or an Endocrinologist in the mix of doctors you see?

Could one of them possibly disect the crossover illness problem and deal with

you on a systemic basis? Just an idea. I know all of your doctors are working to

solve the problem. I am a high complexity case too. Hang in there, answers are

just around the corner.

Caroline

JC Rose wrote: Hi Sue#2,

Things are not going so well right now. I'm feeling really fatigued and the

abdominal bloating still seems to be there. I can resolve the pain and bloating

by taking an extra 20 mg of methylpred (which is all the doctors have as far as

options for me at this time). I'm trying to " endure " because that extra bolus

of methylpred almost DOUBLES my regular dose of 28 mg! For the first time in 5

years I'm noticing swelling in my face (probably due to the high methylpred

dosage). I have a lot of edema all over my body. The sweating attacks have

been awful. I carry around a towel because it literally feels like someone just

put me in a kettle of steaming water...the sweat just pours out of me. I then

end up extremely dehydrated. In the hospital they had IVs running in me

continuously (and fast) due to dehydration. No matter what I drink (and I try

to drink a lot of liquids!), I just seem to have more to sweat out! It's an

uphill battle.

My specialists' nurse practitioners are adamant that my hospital stay was for

constipation! I whole-heartedly agree! Why I'm producing so much gas, I don't

know. That could be from the pancreatic enzymes that I'm taking to try to get

my digestive system to break down food. I mean, it hasn't been functioning well

for some time. I'm on the lowest dose fentanyl (Duragesic) patch. My

intestines just couldn't contract well enough with all that gas extending them

beyond they're " stretching point. "

I'm not constipated because I'm going every day. Between my pancreatic

insufficiency and my liver enzymes now higher than they have ever been, next

Monday they are going to do some more specific blood work regarding the liver.

Apparently there is an autoimmune disease that effects the liver specifically.

The tests are showing that there is liver damage, and one of my docs is pushing

to get a liver biopsy done. That's the only real way they'll know what changes

are going on in the cells of my liver.

Geez, yes I have a lot of bruising and have problems with blood clotting. It's

my understanding that the liver has something to do with blood clotting. I'm

not sure what that is. They did mention diverticulitis and I'm scheduled to

have a colonoscopy the week after next. I don't know if I can handle the prep

for the test though. With my bypass, drinking the gallon of GI lavage solution

is going to be almost impossible. I gagged and threw up with sweats and

dizziness the last time I had to drink that stuff. That was before my abdominal

surgery. Now I have only a 4-tablespoon pouch of a stomach. I'm in such a

weakened state that I don't think I get through it. I'm going to try to find

some other alternatives.

My restless leg syndrome is quite bad. I feel like bugs are crawling all up and

down my legs. I can't sleep or sit still with the aching and " buzzy " feeling in

my legs. I take Klonopin for at night for this. This has helped tremendously.

Funny that you mention being very athletic in your younger years. I was a

dancer and women's self-defense instructor. I was very athletic and on the go

all the time. I can remember my mother yelling at me at the dinner table to

stop bouncing my legs. Sometimes now I just want to crawl out of my legs all

together.

The docs did mention diverticulitis (which is in the family). I suppose this

would show up on colonoscopy. My rheumy though wants my GI doc to do a liver

biopsy ASAP. Otherwise, without figuring what's going on there, they can't get

me back on the MTX. My hair has been falling out. Only when I've been on the

MTX did my hair STOP falling out! Guess I just like to be different. I only

took the MTX by self-injection into the thigh and had no adverse side effects

from it.

They did " discover " in the hospital that for some reason my blood sugars are

running abnormally low. Just another part of the puzzle, I guess!

I know you will all understand what I mean by " feeling that my body is going

down hill. " Nothing is making me feel better and bells are going off in my head

warning me to be more diligent about getting treatment soon. As least now, I do

have some medical staff that is listening, but even they admit what's going on

with me is over their head because it crosses specialties. Hard to tell which

symptom is from what condition.

I'm so fatigued and feel really depressed right now. I'm trying to hang in

their, but, of course, financial matters are also a source of stress right now.

I'm trying to support myself and my son on income that was specifically designed

for only one person to live on. Relief on many fronts seems to be not something

I can reach out and touch at this time.

Maybe tomorrow will be a better day...I hope so anyway. Thanks so much for

caring. It really is an emotional release to relate to others who know what

you're talking about! Thank you for your kindness!

Jul

(lilac_rose@... )

Re: Just back from a hospital stay...long story -

sorry :-(

Dear Jul,

I am very sorry that it took this long to respond to you, but I am far

behind in everything right now. I know that you went through quite an

ordeal at the hospital, and yes...it's so frustrating when you leave and you

don't have an exact answer. How are you feeling now Jul? I too have been

on the duresic patch a lot. I was put on it when I was in the hospital last

At first, it made me itch a little and then it calmed down. The day I was

to be released, my doctor came in to look at me and see if I was good to go

home. She gave me a whole exam and gave me a green light. When I stood up

to put my clothes on, I got a very sensation through my body and I felt like

almost fainting....a kind of floating feeling, kind of over-whelming. So

they sat me down right away. For hours, I didn't feel very good and I asked

them to remove the patch for me. They did and I felt perfectly fine after

that. The next day I was released, but got home and had tremendous pain

through my legs that was absolutely un-bearable, so I returned to the

hospital. This is when all that severe bruising was going on with me. I

sent the pictures to the Stills Site for everyone to see. The docs in the

ER had never heard of Stills, and at that point, my doc had diagnosed me

with Hibernian Fever Disease or Stills, but couldn't make a complete

diagnosis. So, to make a long story short, I had several injections of

Morphine and I was put on the patch again. That night, I tolerated it very

well, and wore it for a couple of days, and would change to another one.

Jul, my constipation either from the patch or all the meds in the hospital

was horrible. I remember trying to go to the bathroom and it was one of the

worse moments of my life. I was in agony and was literally jumping off the

toilet with pain. I think it has to do a lot with meds too, not eating

right when you are in a " flare " , because I know, when I am in a " flare " , I

have no appetite at all, but I feel that the patch had something to do with

it too. So, you are definitely not alone. My constipation was so horrible,

that I remember tearing and bleeding. I hope that they are watching you

very careful with your bowel. It does not sound good and sounds very

swollen. My mother has diverticulitis and gets the bad bowel syndrome too..

.do you have diverticulitis? I also have the restless leg syndrome too Jul.

It's horrible, but I take over the counter meds for it. Some nights, it

keeps me awake for hours. I cannot stand the pain and the spasms keep me

awake, but the aching feeling can be over-whelming too. I have had this

since I was a young girl. I was over-athletic and I think that it really

brought it on. Jul, please keep us up-dated about you, if you can...okay?

Know that everyone is thinking of you and I definitely " hear " your

frustrations and know how you feel. I am hoping by now, that you are

feeling some type of relief. Be well friend. Hugs

Love, Sue #2

[Guest guest]

Do you have an Internist or an Endocrinologist in the mix of doctors you see?

Could one of them possibly disect the crossover illness problem and deal with

you on a systemic basis? Just an idea. I know all of your doctors are working to

solve the problem. I am a high complexity case too. Hang in there, answers are

just around the corner.

Caroline

JC Rose wrote: Hi Sue#2,

Things are not going so well right now. I'm feeling really fatigued and the

abdominal bloating still seems to be there. I can resolve the pain and bloating

by taking an extra 20 mg of methylpred (which is all the doctors have as far as

options for me at this time). I'm trying to " endure " because that extra bolus

of methylpred almost DOUBLES my regular dose of 28 mg! For the first time in 5

years I'm noticing swelling in my face (probably due to the high methylpred

dosage). I have a lot of edema all over my body. The sweating attacks have

been awful. I carry around a towel because it literally feels like someone just

put me in a kettle of steaming water...the sweat just pours out of me. I then

end up extremely dehydrated. In the hospital they had IVs running in me

continuously (and fast) due to dehydration. No matter what I drink (and I try

to drink a lot of liquids!), I just seem to have more to sweat out! It's an

uphill battle.

My specialists' nurse practitioners are adamant that my hospital stay was for

constipation! I whole-heartedly agree! Why I'm producing so much gas, I don't

know. That could be from the pancreatic enzymes that I'm taking to try to get

my digestive system to break down food. I mean, it hasn't been functioning well

for some time. I'm on the lowest dose fentanyl (Duragesic) patch. My

intestines just couldn't contract well enough with all that gas extending them

beyond they're " stretching point. "

I'm not constipated because I'm going every day. Between my pancreatic

insufficiency and my liver enzymes now higher than they have ever been, next

Monday they are going to do some more specific blood work regarding the liver.

Apparently there is an autoimmune disease that effects the liver specifically.

The tests are showing that there is liver damage, and one of my docs is pushing

to get a liver biopsy done. That's the only real way they'll know what changes

are going on in the cells of my liver.

Geez, yes I have a lot of bruising and have problems with blood clotting. It's

my understanding that the liver has something to do with blood clotting. I'm

not sure what that is. They did mention diverticulitis and I'm scheduled to

have a colonoscopy the week after next. I don't know if I can handle the prep

for the test though. With my bypass, drinking the gallon of GI lavage solution

is going to be almost impossible. I gagged and threw up with sweats and

dizziness the last time I had to drink that stuff. That was before my abdominal

surgery. Now I have only a 4-tablespoon pouch of a stomach. I'm in such a

weakened state that I don't think I get through it. I'm going to try to find

some other alternatives.

My restless leg syndrome is quite bad. I feel like bugs are crawling all up and

down my legs. I can't sleep or sit still with the aching and " buzzy " feeling in

my legs. I take Klonopin for at night for this. This has helped tremendously.

Funny that you mention being very athletic in your younger years. I was a

dancer and women's self-defense instructor. I was very athletic and on the go

all the time. I can remember my mother yelling at me at the dinner table to

stop bouncing my legs. Sometimes now I just want to crawl out of my legs all

together.

The docs did mention diverticulitis (which is in the family). I suppose this

would show up on colonoscopy. My rheumy though wants my GI doc to do a liver

biopsy ASAP. Otherwise, without figuring what's going on there, they can't get

me back on the MTX. My hair has been falling out. Only when I've been on the

MTX did my hair STOP falling out! Guess I just like to be different. I only

took the MTX by self-injection into the thigh and had no adverse side effects

from it.

They did " discover " in the hospital that for some reason my blood sugars are

running abnormally low. Just another part of the puzzle, I guess!

I know you will all understand what I mean by " feeling that my body is going

down hill. " Nothing is making me feel better and bells are going off in my head

warning me to be more diligent about getting treatment soon. As least now, I do

have some medical staff that is listening, but even they admit what's going on

with me is over their head because it crosses specialties. Hard to tell which

symptom is from what condition.

I'm so fatigued and feel really depressed right now. I'm trying to hang in

their, but, of course, financial matters are also a source of stress right now.

I'm trying to support myself and my son on income that was specifically designed

for only one person to live on. Relief on many fronts seems to be not something

I can reach out and touch at this time.

Maybe tomorrow will be a better day...I hope so anyway. Thanks so much for

caring. It really is an emotional release to relate to others who know what

you're talking about! Thank you for your kindness!

Jul

(lilac_rose@... )

Re: Just back from a hospital stay...long story -

sorry :-(

Dear Jul,

I am very sorry that it took this long to respond to you, but I am far

behind in everything right now. I know that you went through quite an

ordeal at the hospital, and yes...it's so frustrating when you leave and you

don't have an exact answer. How are you feeling now Jul? I too have been

on the duresic patch a lot. I was put on it when I was in the hospital last

At first, it made me itch a little and then it calmed down. The day I was

to be released, my doctor came in to look at me and see if I was good to go

home. She gave me a whole exam and gave me a green light. When I stood up

to put my clothes on, I got a very sensation through my body and I felt like

almost fainting....a kind of floating feeling, kind of over-whelming. So

they sat me down right away. For hours, I didn't feel very good and I asked

them to remove the patch for me. They did and I felt perfectly fine after

that. The next day I was released, but got home and had tremendous pain

through my legs that was absolutely un-bearable, so I returned to the

hospital. This is when all that severe bruising was going on with me. I

sent the pictures to the Stills Site for everyone to see. The docs in the

ER had never heard of Stills, and at that point, my doc had diagnosed me

with Hibernian Fever Disease or Stills, but couldn't make a complete

diagnosis. So, to make a long story short, I had several injections of

Morphine and I was put on the patch again. That night, I tolerated it very

well, and wore it for a couple of days, and would change to another one.

Jul, my constipation either from the patch or all the meds in the hospital

was horrible. I remember trying to go to the bathroom and it was one of the

worse moments of my life. I was in agony and was literally jumping off the

toilet with pain. I think it has to do a lot with meds too, not eating

right when you are in a " flare " , because I know, when I am in a " flare " , I

have no appetite at all, but I feel that the patch had something to do with

it too. So, you are definitely not alone. My constipation was so horrible,

that I remember tearing and bleeding. I hope that they are watching you

very careful with your bowel. It does not sound good and sounds very

swollen. My mother has diverticulitis and gets the bad bowel syndrome too..

.do you have diverticulitis? I also have the restless leg syndrome too Jul.

It's horrible, but I take over the counter meds for it. Some nights, it

keeps me awake for hours. I cannot stand the pain and the spasms keep me

awake, but the aching feeling can be over-whelming too. I have had this

since I was a young girl. I was over-athletic and I think that it really

brought it on. Jul, please keep us up-dated about you, if you can...okay?

Know that everyone is thinking of you and I definitely " hear " your

frustrations and know how you feel. I am hoping by now, that you are

feeling some type of relief. Be well friend. Hugs

Love, Sue #2

[Guest guest]

Do you have an Internist or an Endocrinologist in the mix of doctors you see?

Could one of them possibly disect the crossover illness problem and deal with

you on a systemic basis? Just an idea. I know all of your doctors are working to

solve the problem. I am a high complexity case too. Hang in there, answers are

just around the corner.

Caroline

JC Rose wrote: Hi Sue#2,

Things are not going so well right now. I'm feeling really fatigued and the

abdominal bloating still seems to be there. I can resolve the pain and bloating

by taking an extra 20 mg of methylpred (which is all the doctors have as far as

options for me at this time). I'm trying to " endure " because that extra bolus

of methylpred almost DOUBLES my regular dose of 28 mg! For the first time in 5

years I'm noticing swelling in my face (probably due to the high methylpred

dosage). I have a lot of edema all over my body. The sweating attacks have

been awful. I carry around a towel because it literally feels like someone just

put me in a kettle of steaming water...the sweat just pours out of me. I then

end up extremely dehydrated. In the hospital they had IVs running in me

continuously (and fast) due to dehydration. No matter what I drink (and I try

to drink a lot of liquids!), I just seem to have more to sweat out! It's an

uphill battle.

My specialists' nurse practitioners are adamant that my hospital stay was for

constipation! I whole-heartedly agree! Why I'm producing so much gas, I don't

know. That could be from the pancreatic enzymes that I'm taking to try to get

my digestive system to break down food. I mean, it hasn't been functioning well

for some time. I'm on the lowest dose fentanyl (Duragesic) patch. My

intestines just couldn't contract well enough with all that gas extending them

beyond they're " stretching point. "

I'm not constipated because I'm going every day. Between my pancreatic

insufficiency and my liver enzymes now higher than they have ever been, next

Monday they are going to do some more specific blood work regarding the liver.

Apparently there is an autoimmune disease that effects the liver specifically.

The tests are showing that there is liver damage, and one of my docs is pushing

to get a liver biopsy done. That's the only real way they'll know what changes

are going on in the cells of my liver.

Geez, yes I have a lot of bruising and have problems with blood clotting. It's

my understanding that the liver has something to do with blood clotting. I'm

not sure what that is. They did mention diverticulitis and I'm scheduled to

have a colonoscopy the week after next. I don't know if I can handle the prep

for the test though. With my bypass, drinking the gallon of GI lavage solution

is going to be almost impossible. I gagged and threw up with sweats and

dizziness the last time I had to drink that stuff. That was before my abdominal

surgery. Now I have only a 4-tablespoon pouch of a stomach. I'm in such a

weakened state that I don't think I get through it. I'm going to try to find

some other alternatives.

My restless leg syndrome is quite bad. I feel like bugs are crawling all up and

down my legs. I can't sleep or sit still with the aching and " buzzy " feeling in

my legs. I take Klonopin for at night for this. This has helped tremendously.

Funny that you mention being very athletic in your younger years. I was a

dancer and women's self-defense instructor. I was very athletic and on the go

all the time. I can remember my mother yelling at me at the dinner table to

stop bouncing my legs. Sometimes now I just want to crawl out of my legs all

together.

The docs did mention diverticulitis (which is in the family). I suppose this

would show up on colonoscopy. My rheumy though wants my GI doc to do a liver

biopsy ASAP. Otherwise, without figuring what's going on there, they can't get

me back on the MTX. My hair has been falling out. Only when I've been on the

MTX did my hair STOP falling out! Guess I just like to be different. I only

took the MTX by self-injection into the thigh and had no adverse side effects

from it.

They did " discover " in the hospital that for some reason my blood sugars are

running abnormally low. Just another part of the puzzle, I guess!

I know you will all understand what I mean by " feeling that my body is going

down hill. " Nothing is making me feel better and bells are going off in my head

warning me to be more diligent about getting treatment soon. As least now, I do

have some medical staff that is listening, but even they admit what's going on

with me is over their head because it crosses specialties. Hard to tell which

symptom is from what condition.

I'm so fatigued and feel really depressed right now. I'm trying to hang in

their, but, of course, financial matters are also a source of stress right now.

I'm trying to support myself and my son on income that was specifically designed

for only one person to live on. Relief on many fronts seems to be not something

I can reach out and touch at this time.

Maybe tomorrow will be a better day...I hope so anyway. Thanks so much for

caring. It really is an emotional release to relate to others who know what

you're talking about! Thank you for your kindness!

Jul

(lilac_rose@... )

Re: Just back from a hospital stay...long story -

sorry :-(

Dear Jul,

I am very sorry that it took this long to respond to you, but I am far

behind in everything right now. I know that you went through quite an

ordeal at the hospital, and yes...it's so frustrating when you leave and you

don't have an exact answer. How are you feeling now Jul? I too have been

on the duresic patch a lot. I was put on it when I was in the hospital last

At first, it made me itch a little and then it calmed down. The day I was

to be released, my doctor came in to look at me and see if I was good to go

home. She gave me a whole exam and gave me a green light. When I stood up

to put my clothes on, I got a very sensation through my body and I felt like

almost fainting....a kind of floating feeling, kind of over-whelming. So

they sat me down right away. For hours, I didn't feel very good and I asked

them to remove the patch for me. They did and I felt perfectly fine after

that. The next day I was released, but got home and had tremendous pain

through my legs that was absolutely un-bearable, so I returned to the

hospital. This is when all that severe bruising was going on with me. I

sent the pictures to the Stills Site for everyone to see. The docs in the

ER had never heard of Stills, and at that point, my doc had diagnosed me

with Hibernian Fever Disease or Stills, but couldn't make a complete

diagnosis. So, to make a long story short, I had several injections of

Morphine and I was put on the patch again. That night, I tolerated it very

well, and wore it for a couple of days, and would change to another one.

Jul, my constipation either from the patch or all the meds in the hospital

was horrible. I remember trying to go to the bathroom and it was one of the

worse moments of my life. I was in agony and was literally jumping off the

toilet with pain. I think it has to do a lot with meds too, not eating

right when you are in a " flare " , because I know, when I am in a " flare " , I

have no appetite at all, but I feel that the patch had something to do with

it too. So, you are definitely not alone. My constipation was so horrible,

that I remember tearing and bleeding. I hope that they are watching you

very careful with your bowel. It does not sound good and sounds very

swollen. My mother has diverticulitis and gets the bad bowel syndrome too..

.do you have diverticulitis? I also have the restless leg syndrome too Jul.

It's horrible, but I take over the counter meds for it. Some nights, it

keeps me awake for hours. I cannot stand the pain and the spasms keep me

awake, but the aching feeling can be over-whelming too. I have had this

since I was a young girl. I was over-athletic and I think that it really

brought it on. Jul, please keep us up-dated about you, if you can...okay?

Know that everyone is thinking of you and I definitely " hear " your

frustrations and know how you feel. I am hoping by now, that you are

feeling some type of relief. Be well friend. Hugs

Love, Sue #2