Swelling/Bloating

[Guest guest]

Hi, all. I'm hoping some of you may be able to shed some light on

this. I know a lot of people are talking about trying to keep weight

on, but lately I've noticed my weight going up. (I'm also " returning "

food less often even though nausea keeps persisting). I've also noticed

that right after I eat or drink, no matter the amount, I start to swell

and am noticeably bigger than before I consumed anything. I know some

other people have mentioned this too, but are you gaining weight with

the swelling? I just feel like I am filled with wet heavy sandbags and

old tires. My body doesn't even feel like it belongs to me anymore.

Has anyone else gone through this? Anyone have any suggestions?

Sandi in VA

[Guest guest]

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. Crabby off and on. He says his chest hurts at times. His legs and feet/ankles are week. Yet, his hepatologist (one of the best in the nation, I am told) claims that his liver blood tests are pretty much normal since he has been taking Urso and I see all the blood results . The colitis is under control because he is on Remicade infusions. It bothers us that no one seems to relate to his symptoms because his liver function tests are normal. The Sed rate is always elevated and they use to claim it was the colitis, but he has been going to the bathroom normal for over 4 months since the Remicade. I am thinking his ducts or something are inflamed and perhaps he does have a symptom of the disease but no one seems to be able to tell us anything. Any clues on what we should ask when I call the Dr. again... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!.

Stevie Ostos-Gedgaudas

mother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6

[Guest guest]

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. Crabby off and on. He says his chest hurts at times. His legs and feet/ankles are week. Yet, his hepatologist (one of the best in the nation, I am told) claims that his liver blood tests are pretty much normal since he has been taking Urso and I see all the blood results . The colitis is under control because he is on Remicade infusions. It bothers us that no one seems to relate to his symptoms because his liver function tests are normal. The Sed rate is always elevated and they use to claim it was the colitis, but he has been going to the bathroom normal for over 4 months since the Remicade. I am thinking his ducts or something are inflamed and perhaps he does have a symptom of the disease but no one seems to be able to tell us anything. Any clues on what we should ask when I call the Dr. again... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!.

Stevie Ostos-Gedgaudas

mother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6

[Guest guest]

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. Crabby off and on. He says his chest hurts at times. His legs and feet/ankles are week. Yet, his hepatologist (one of the best in the nation, I am told) claims that his liver blood tests are pretty much normal since he has been taking Urso and I see all the blood results . The colitis is under control because he is on Remicade infusions. It bothers us that no one seems to relate to his symptoms because his liver function tests are normal. The Sed rate is always elevated and they use to claim it was the colitis, but he has been going to the bathroom normal for over 4 months since the Remicade. I am thinking his ducts or something are inflamed and perhaps he does have a symptom of the disease but no one seems to be able to tell us anything. Any clues on what we should ask when I call the Dr. again... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!.

Stevie Ostos-Gedgaudas

mother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6

[Guest guest]

Stevie -

Just an observation. , who is now almost 18, was exhausted, always fatigued, had a difficult time sleeping, etc for months after his colitis was seemingly controlled and his PSC diagnosis was made. Gradually, things got better, although he still has GI discomfort/pain at times, still watches what he eats, still sleeps about 10 to 12 hours a day. Why, I wish I knew, and it probably is more complex than we would think. I'm guessing that it may take much longer for the body to recuperate than we think. Plus, the psychosocial issues facing these guys is huge. I'll never forget saying after a vacation, "I think I'll live again". It is still hard for him to deal with stressful situations. Lastly, on his last colonoscopy, the colon looked normal, yet active colitis was still present microscopically - so that may still wage an effect on how they feel.

I share the concerns as a parent - for me, those questions of "why" - why do some people & some of the younger kids seemingly do great and others struggle; why can't he just "buck up" and try harder; is laziness or lack of initiative a factor and am I allowing "laziness"; how do I best encourage him, support him, guide him through this? Yes, I still struggle with all of these questions. It isn't easy! At least we have this group to share with. And I know there is no right answer to any of this, even though others will tell you like there is. There is each of us doing our best for those we love, trying different things to help them adjust, accommodate and do the best they can. And hoping that things will get better and will become easier in the future.

Don't know that I really said anything of substance, except it's hard for your son and for your family.

Take care.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

-----Original Message-----From: [mailto: ]On Behalf Of Stevie GedgaudasSent: Tuesday, April 22, 2008 7:59 AMTo: Subject: Re: Swelling/Bloating

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. ... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!. Stevie Ostos-Gedgaudasmother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6

[Guest guest]

Stevie -

Just an observation. , who is now almost 18, was exhausted, always fatigued, had a difficult time sleeping, etc for months after his colitis was seemingly controlled and his PSC diagnosis was made. Gradually, things got better, although he still has GI discomfort/pain at times, still watches what he eats, still sleeps about 10 to 12 hours a day. Why, I wish I knew, and it probably is more complex than we would think. I'm guessing that it may take much longer for the body to recuperate than we think. Plus, the psychosocial issues facing these guys is huge. I'll never forget saying after a vacation, "I think I'll live again". It is still hard for him to deal with stressful situations. Lastly, on his last colonoscopy, the colon looked normal, yet active colitis was still present microscopically - so that may still wage an effect on how they feel.

I share the concerns as a parent - for me, those questions of "why" - why do some people & some of the younger kids seemingly do great and others struggle; why can't he just "buck up" and try harder; is laziness or lack of initiative a factor and am I allowing "laziness"; how do I best encourage him, support him, guide him through this? Yes, I still struggle with all of these questions. It isn't easy! At least we have this group to share with. And I know there is no right answer to any of this, even though others will tell you like there is. There is each of us doing our best for those we love, trying different things to help them adjust, accommodate and do the best they can. And hoping that things will get better and will become easier in the future.

Don't know that I really said anything of substance, except it's hard for your son and for your family.

Take care.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

-----Original Message-----From: [mailto: ]On Behalf Of Stevie GedgaudasSent: Tuesday, April 22, 2008 7:59 AMTo: Subject: Re: Swelling/Bloating

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. ... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!. Stevie Ostos-Gedgaudasmother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6

[Guest guest]

Stevie -

Just an observation. , who is now almost 18, was exhausted, always fatigued, had a difficult time sleeping, etc for months after his colitis was seemingly controlled and his PSC diagnosis was made. Gradually, things got better, although he still has GI discomfort/pain at times, still watches what he eats, still sleeps about 10 to 12 hours a day. Why, I wish I knew, and it probably is more complex than we would think. I'm guessing that it may take much longer for the body to recuperate than we think. Plus, the psychosocial issues facing these guys is huge. I'll never forget saying after a vacation, "I think I'll live again". It is still hard for him to deal with stressful situations. Lastly, on his last colonoscopy, the colon looked normal, yet active colitis was still present microscopically - so that may still wage an effect on how they feel.

I share the concerns as a parent - for me, those questions of "why" - why do some people & some of the younger kids seemingly do great and others struggle; why can't he just "buck up" and try harder; is laziness or lack of initiative a factor and am I allowing "laziness"; how do I best encourage him, support him, guide him through this? Yes, I still struggle with all of these questions. It isn't easy! At least we have this group to share with. And I know there is no right answer to any of this, even though others will tell you like there is. There is each of us doing our best for those we love, trying different things to help them adjust, accommodate and do the best they can. And hoping that things will get better and will become easier in the future.

Don't know that I really said anything of substance, except it's hard for your son and for your family.

Take care.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

-----Original Message-----From: [mailto: ]On Behalf Of Stevie GedgaudasSent: Tuesday, April 22, 2008 7:59 AMTo: Subject: Re: Swelling/Bloating

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. ... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!. Stevie Ostos-Gedgaudasmother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6

[Guest guest]

Joanne, yes, you have said it best. It is hard not knowing if he is lazy or ill. Sometimes, he says, I am so happy today and others, he seems so sad...Probably , because he does not feel well and is just use to not feeling well that it is just part of his daily routine. I do cuddle Tyler and probably always will.give him that extra leaway when he is bad not knowing what the future brings for him medically....... Thanks for your comments. It is good to know there are others sharing our feelings...Watching him play a weekend baseball game with 12 of his class mates, really shed soem light. He wanted to be with his friends and he participated to the best of his ability. He just is extremely weak compared to the other kids and all my friends could see it too. We will keep praying...and for your son too and all...

Stevie OStos

" Copper "

" Copper "

Sent by:

04/22/2008 10:43 AM

Please respond to

To

< >

cc

Subject

RE: Swelling/Bloating

Stevie -

Just an observation. , who is now almost 18, was exhausted, always fatigued, had a difficult time sleeping, etc for months after his colitis was seemingly controlled and his PSC diagnosis was made. Gradually, things got better, although he still has GI discomfort/pain at times, still watches what he eats, still sleeps about 10 to 12 hours a day. Why, I wish I knew, and it probably is more complex than we would think. I'm guessing that it may take much longer for the body to recuperate than we think. Plus, the psychosocial issues facing these guys is huge. I'll never forget saying after a vacation, " I think I'll live again " . It is still hard for him to deal with stressful situations. Lastly, on his last colonoscopy, the colon looked normal, yet active colitis was still present microscopically - so that may still wage an effect on how they feel.

I share the concerns as a parent - for me, those questions of " why " - why do some people & some of the younger kids seemingly do great and others struggle; why can't he just " buck up " and try harder; is laziness or lack of initiative a factor and am I allowing " laziness " ; how do I best encourage him, support him, guide him through this? Yes, I still struggle with all of these questions. It isn't easy! At least we have this group to share with. And I know there is no right answer to any of this, even though others will tell you like there is. There is each of us doing our best for those we love, trying different things to help them adjust, accommodate and do the best they can. And hoping that things will get better and will become easier in the future.

Don't know that I really said anything of substance, except it's hard for your son and for your family.

Take care.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

Re: Swelling/Bloating

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. ... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!.

Stevie Ostos-Gedgaudas

mother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6

[Guest guest]

Joanne, yes, you have said it best. It is hard not knowing if he is lazy or ill. Sometimes, he says, I am so happy today and others, he seems so sad...Probably , because he does not feel well and is just use to not feeling well that it is just part of his daily routine. I do cuddle Tyler and probably always will.give him that extra leaway when he is bad not knowing what the future brings for him medically....... Thanks for your comments. It is good to know there are others sharing our feelings...Watching him play a weekend baseball game with 12 of his class mates, really shed soem light. He wanted to be with his friends and he participated to the best of his ability. He just is extremely weak compared to the other kids and all my friends could see it too. We will keep praying...and for your son too and all...

Stevie OStos

" Copper "

" Copper "

Sent by:

04/22/2008 10:43 AM

Please respond to

To

< >

cc

Subject

RE: Swelling/Bloating

Stevie -

Just an observation. , who is now almost 18, was exhausted, always fatigued, had a difficult time sleeping, etc for months after his colitis was seemingly controlled and his PSC diagnosis was made. Gradually, things got better, although he still has GI discomfort/pain at times, still watches what he eats, still sleeps about 10 to 12 hours a day. Why, I wish I knew, and it probably is more complex than we would think. I'm guessing that it may take much longer for the body to recuperate than we think. Plus, the psychosocial issues facing these guys is huge. I'll never forget saying after a vacation, " I think I'll live again " . It is still hard for him to deal with stressful situations. Lastly, on his last colonoscopy, the colon looked normal, yet active colitis was still present microscopically - so that may still wage an effect on how they feel.

I share the concerns as a parent - for me, those questions of " why " - why do some people & some of the younger kids seemingly do great and others struggle; why can't he just " buck up " and try harder; is laziness or lack of initiative a factor and am I allowing " laziness " ; how do I best encourage him, support him, guide him through this? Yes, I still struggle with all of these questions. It isn't easy! At least we have this group to share with. And I know there is no right answer to any of this, even though others will tell you like there is. There is each of us doing our best for those we love, trying different things to help them adjust, accommodate and do the best they can. And hoping that things will get better and will become easier in the future.

Don't know that I really said anything of substance, except it's hard for your son and for your family.

Take care.

Joanne H

(, Ca., mom of , 17, UC/PSC 2-06; JRA 1998)

Re: Swelling/Bloating

Hey all, regarding the ascistes. My 10 year old is swollen (off steroids for over 4 months), his is soo tired off and on. ... It just makes me feel so bad as a parent that he is so tired /weak and my husband is in denial just thinking he is lazy.....HELP!!!.

Stevie Ostos-Gedgaudas

mother to Tyler (age 10m UC, PSC and osteoporosis) and McKenna age 6