Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Before we started eating differently ( www.hacres.com ) my daughter suffered greatly with daily pain…and sickness… She was nauseated and often vomited every day for a long time. She got a PSC dx in August of 04 after a liver biopsy…but she was sick from December 03 Then she was still sick and they finally dx her with UC in February of 06…even after starting all the UC meds she didn’t get any better until June…because the last weekend in May I went to a class this lady was having who taught me about food and it’s affects on our bodies. After about six months of faithfully being on the “diet” we went to a restaurant and had salad and baked potato…I forgot to order the potato without sour cream and I figured once won’t hurt…so ate less than a tablespoon of sour cream with a meal that we normally ate just fine…15 minutes later she was complaining of a tummy ache 30 minutes later her butt was exploding (severe diarrhea) and she was in severe pain… four hours later she started pooping blood. So after six months of no dairy we found that she can’t have any… later I thought…well, maybe it was just the sour cream and maybe cheese won’t hurt…nope…cheese did the same thing. Anything with milk in it will do it as well. Butter on the other hand has never affected her…go figure! We recently found out that peanuts, peanut butter, and peanut oil do the same thing. Also, chicken that isn’t organic will cause her to have pain for three or four days…Just one drumstick! Grilled with nothing on it!! But since we have been making sure that the meat we do eat…we eat meat about twice a month… is organic and no peanuts and no dairy with she has been pain free. Well, we do have the help of Asacol three times a day and don’t forget the Imuran (not sure if I am spelling that right) but even before the “diet” the meds didn’t seem to do anything but stop the bleeding. Her pain was still there. Also she gets a gray pallor and very dark circles under her eyes when she has pain, and even though the docs say that her abdominal pain is all from UC and nothing to do with the PSC…her liver levels go up when she looks like that and her pain happens. I am so sorry that Noah is having daily pain…it is bad enough when an adult has pain…but when it is your child…it is such a helpless, hopeless feeling ( In Christ's Love, Bethany Hunt " And he [Jesus] is the propitiation for our sins: and not for ours only, but also for the sins of the whole world. " 1 2:2 From: [mailto: ] On Behalf Of mariapamom Sent: Wednesday, April 30, 2008 9:25 PM To: Subject: Abdominal pain? Just a quick question for fellow PSCers... How many of you suffer daily from abdominal pain? If it is not daily you suffer indicate how often if ever you DO suffer from it please. My Noah has it nearly daily and the docs are not up for doing a darn thing. I don't know if it is the UC or the PSC to be honest. Anyway, just curious. Blessings, www.caringbridge.org/visit/noahwmartens password available by e-mailing request to me: chelseablue13girl@... (Just tell me who you are ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Before we started eating differently ( www.hacres.com ) my daughter suffered greatly with daily pain…and sickness… She was nauseated and often vomited every day for a long time. She got a PSC dx in August of 04 after a liver biopsy…but she was sick from December 03 Then she was still sick and they finally dx her with UC in February of 06…even after starting all the UC meds she didn’t get any better until June…because the last weekend in May I went to a class this lady was having who taught me about food and it’s affects on our bodies. After about six months of faithfully being on the “diet” we went to a restaurant and had salad and baked potato…I forgot to order the potato without sour cream and I figured once won’t hurt…so ate less than a tablespoon of sour cream with a meal that we normally ate just fine…15 minutes later she was complaining of a tummy ache 30 minutes later her butt was exploding (severe diarrhea) and she was in severe pain… four hours later she started pooping blood. So after six months of no dairy we found that she can’t have any… later I thought…well, maybe it was just the sour cream and maybe cheese won’t hurt…nope…cheese did the same thing. Anything with milk in it will do it as well. Butter on the other hand has never affected her…go figure! We recently found out that peanuts, peanut butter, and peanut oil do the same thing. Also, chicken that isn’t organic will cause her to have pain for three or four days…Just one drumstick! Grilled with nothing on it!! But since we have been making sure that the meat we do eat…we eat meat about twice a month… is organic and no peanuts and no dairy with she has been pain free. Well, we do have the help of Asacol three times a day and don’t forget the Imuran (not sure if I am spelling that right) but even before the “diet” the meds didn’t seem to do anything but stop the bleeding. Her pain was still there. Also she gets a gray pallor and very dark circles under her eyes when she has pain, and even though the docs say that her abdominal pain is all from UC and nothing to do with the PSC…her liver levels go up when she looks like that and her pain happens. I am so sorry that Noah is having daily pain…it is bad enough when an adult has pain…but when it is your child…it is such a helpless, hopeless feeling ( In Christ's Love, Bethany Hunt " And he [Jesus] is the propitiation for our sins: and not for ours only, but also for the sins of the whole world. " 1 2:2 From: [mailto: ] On Behalf Of mariapamom Sent: Wednesday, April 30, 2008 9:25 PM To: Subject: Abdominal pain? Just a quick question for fellow PSCers... How many of you suffer daily from abdominal pain? If it is not daily you suffer indicate how often if ever you DO suffer from it please. My Noah has it nearly daily and the docs are not up for doing a darn thing. I don't know if it is the UC or the PSC to be honest. Anyway, just curious. Blessings, www.caringbridge.org/visit/noahwmartens password available by e-mailing request to me: chelseablue13girl@... (Just tell me who you are ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 Before we started eating differently ( www.hacres.com ) my daughter suffered greatly with daily pain…and sickness… She was nauseated and often vomited every day for a long time. She got a PSC dx in August of 04 after a liver biopsy…but she was sick from December 03 Then she was still sick and they finally dx her with UC in February of 06…even after starting all the UC meds she didn’t get any better until June…because the last weekend in May I went to a class this lady was having who taught me about food and it’s affects on our bodies. After about six months of faithfully being on the “diet” we went to a restaurant and had salad and baked potato…I forgot to order the potato without sour cream and I figured once won’t hurt…so ate less than a tablespoon of sour cream with a meal that we normally ate just fine…15 minutes later she was complaining of a tummy ache 30 minutes later her butt was exploding (severe diarrhea) and she was in severe pain… four hours later she started pooping blood. So after six months of no dairy we found that she can’t have any… later I thought…well, maybe it was just the sour cream and maybe cheese won’t hurt…nope…cheese did the same thing. Anything with milk in it will do it as well. Butter on the other hand has never affected her…go figure! We recently found out that peanuts, peanut butter, and peanut oil do the same thing. Also, chicken that isn’t organic will cause her to have pain for three or four days…Just one drumstick! Grilled with nothing on it!! But since we have been making sure that the meat we do eat…we eat meat about twice a month… is organic and no peanuts and no dairy with she has been pain free. Well, we do have the help of Asacol three times a day and don’t forget the Imuran (not sure if I am spelling that right) but even before the “diet” the meds didn’t seem to do anything but stop the bleeding. Her pain was still there. Also she gets a gray pallor and very dark circles under her eyes when she has pain, and even though the docs say that her abdominal pain is all from UC and nothing to do with the PSC…her liver levels go up when she looks like that and her pain happens. I am so sorry that Noah is having daily pain…it is bad enough when an adult has pain…but when it is your child…it is such a helpless, hopeless feeling ( In Christ's Love, Bethany Hunt " And he [Jesus] is the propitiation for our sins: and not for ours only, but also for the sins of the whole world. " 1 2:2 From: [mailto: ] On Behalf Of mariapamom Sent: Wednesday, April 30, 2008 9:25 PM To: Subject: Abdominal pain? Just a quick question for fellow PSCers... How many of you suffer daily from abdominal pain? If it is not daily you suffer indicate how often if ever you DO suffer from it please. My Noah has it nearly daily and the docs are not up for doing a darn thing. I don't know if it is the UC or the PSC to be honest. Anyway, just curious. Blessings, www.caringbridge.org/visit/noahwmartens password available by e-mailing request to me: chelseablue13girl@... (Just tell me who you are ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 , I have URQ " discomfort " almost all the time. I generally get abdominal pain from my UC. when I am in a flare, then it feels like I have razor blades bouncing around in my guts. HTH, Colleen > > Just a quick question for fellow PSCers... > > How many of you suffer daily from abdominal pain? > > If it is not daily you suffer indicate how often if ever you DO suffer > from it please. > > My Noah has it nearly daily and the docs are not up for doing a darn > thing. I don't know if it is the UC or the PSC to be honest. > > Anyway, just curious. > > Blessings, > > www.caringbridge.org/visit/noahwmartens > > password available by e-mailing request to me: > chelseablue13girl@... > > (Just tell me who you are ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 , I have URQ " discomfort " almost all the time. I generally get abdominal pain from my UC. when I am in a flare, then it feels like I have razor blades bouncing around in my guts. HTH, Colleen > > Just a quick question for fellow PSCers... > > How many of you suffer daily from abdominal pain? > > If it is not daily you suffer indicate how often if ever you DO suffer > from it please. > > My Noah has it nearly daily and the docs are not up for doing a darn > thing. I don't know if it is the UC or the PSC to be honest. > > Anyway, just curious. > > Blessings, > > www.caringbridge.org/visit/noahwmartens > > password available by e-mailing request to me: > chelseablue13girl@... > > (Just tell me who you are ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 , I have URQ " discomfort " almost all the time. I generally get abdominal pain from my UC. when I am in a flare, then it feels like I have razor blades bouncing around in my guts. HTH, Colleen > > Just a quick question for fellow PSCers... > > How many of you suffer daily from abdominal pain? > > If it is not daily you suffer indicate how often if ever you DO suffer > from it please. > > My Noah has it nearly daily and the docs are not up for doing a darn > thing. I don't know if it is the UC or the PSC to be honest. > > Anyway, just curious. > > Blessings, > > www.caringbridge.org/visit/noahwmartens > > password available by e-mailing request to me: > chelseablue13girl@... > > (Just tell me who you are ) > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 I have RUQ pain daily,all day, I am rarely without it. I have PSC no UC I also get the pale stools, and have several loose stools on my bad days. I generally stick to a bland diet and avoid red meat. I have said for years my stomach and gut feel like I am full of broken glass. Somedays are worse than others, but it is always there. PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 I have RUQ pain daily,all day, I am rarely without it. I have PSC no UC I also get the pale stools, and have several loose stools on my bad days. I generally stick to a bland diet and avoid red meat. I have said for years my stomach and gut feel like I am full of broken glass. Somedays are worse than others, but it is always there. PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2008 Report Share Posted April 30, 2008 I have RUQ pain daily,all day, I am rarely without it. I have PSC no UC I also get the pale stools, and have several loose stools on my bad days. I generally stick to a bland diet and avoid red meat. I have said for years my stomach and gut feel like I am full of broken glass. Somedays are worse than others, but it is always there. PSC 5/07 Listed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 I do. EVERY DAY my stomach hurts. It's just so disheartening and I can not imagine one of my children going through this. I'm so sorry for both of you. I went to several doctors before I found one that said basically, well we don't know what's causing your pain but we know it's there so we'll just treat the pain. And now I take pain medication. I'm sure it has something to do with the PSC. I don't have UC or anything like that although I do get diarrhea and constipations issues sometimes. There isn't always an answer it seems, but that doesn't mean it's not real. PSC PBC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 That is a very good question. I have abdominal pain very frequently, at least every other day. I have a jpouch, so I don't know if it is from that, an ulcer or PSC, I just know it hurts. Doctors are aware of it, but other than an endoscope 2 years ago, they do nothing...oh wait, they gave me prilosec to take. Cindy Baudoux-Northrup ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 : I was first diagnosed with UC over 36 years ago, so intestinal pain (generalized abdominal) and chronic fatigue was part of my daily life. My diagnosis came as a result of a routine blood test; it was about 6 years later that the URQ pain started. It has continued for the past 3 years. Occasionally I get sharp stabbing pains, often just a burning rib-cage region pain. I've been to GI's who told me that pain wasn't a normal part of PSC. When I finally got in to see a hepatologist, I found a doctor who would respect my perceptions rather than accuse me of being drug- seeking (my RN daughter laughed at that comment - she said, " of course, you're drug-seeking; you're in pain and searching for relief!) or that it was all 'in my head' (psychosomatic melodrama). The fact is that for some people, PSC causes significant and constant pain. My hepatologist didn't question me, he referred me to a Pain Clinic. My doctor there works with me to manage the pain; we'ce used medication as well as massage & physical therapy. I rarely have pain that I cannot manage as a result. I'm able to remain fully employed and productive. I was staged at a '2' in 2006 and my MRCPs & ERCPs show significant liver damage. I no longer have a colon, but what's left of my intestines remain inflamed often and the URQ pain is present but manageable. Adjusting the diet is definitely a must. Those foods that cause me pain are eliminated from my diet. If I eat them, then I know what will happen. It's my choice whether the desire for the food is worth the pain that it will cause. With the occasional exception of really rich ice cream, no food is worth the certain consequences. Debbie in Seattle UC '72, JPouch Colectomy '91, PSC since at least '99, stage 2 2006 Just a quick question for fellow PSCers... How many of you suffer daily from abdominal pain? Blessings, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Bethany I'd die a thousand times before I would want to see one of my children deal with what I have to. I was 16 when first Dx'ed with UC, and I now know why my mom was so upset about my DX. It wasn't until I became a mother that I fully appreciated how hard my illness has been on her -- and why. Colleen > > After reading about you all feeling like glass and razor blades in your > stomachs to describe the pain.my heart broke.so I asked my ten year old > daughter how it felt when she had a flare up... she said it was the worse > pain in the world.I said yeah, but how would you describe it to someone who > never felt pain before.she said " You know that poster in the museum .Mr. > Germy " (in the museum there is a picture in the bathroom to encourage kids > to wash their hands, Mr. Germy and Mr. Sudsy. Mr. Germy is this ugly nasty > looking thing and he makes you sick.Mr. Sudsy is can kill Mr. Germy.) She > said " it is like a lot of Mr. Germys got inside me and are eating their way > out. " > > > > I feel so bad for all of you that have to experience this kind of pain. > > > > In Christ's Love, > > Bethany Hunt > > " And he [Jesus] is the propitiation for our sins: and not for ours only, but > also for the sins of the whole world. " 1 2:2 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 >>>It wasn't until I became a mother that I fully appreciated how hard my illness has been on her -- and why. Colleen<<< Something about being a mom changes everything doesn’t it? In Christ's Love, Bethany Hunt " And he [Jesus] is the propitiation for our sins: and not for ours only, but also for the sins of the whole world. " 1 2:2 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2008 Report Share Posted May 1, 2008 Bethany -- motherhood is the original Shock and Awe! Colleen > Something about being a mom changes everything doesn't it? > > > > In Christ's Love, > > Bethany Hunt > > " And he [Jesus] is the propitiation for our sins: and not for ours only, but > also for the sins of the whole world. " 1 2:2 > Quote Link to comment Share on other sites More sharing options...
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