Thursday, May 17, 2012
2nd Opinion - CINCINNATI CHILDREN'S HOSPITAL
Bruce had his 4th colonoscopy...yesterday...yes 4th. Three in the last 2 months. He also had an endoscopy. Bruces pain is about an 8. It averages about that everyday. It doesn't change. Some days it will get to a 9. Pushing on stomach will cause a little jump and guarding. We tried different ways of moving to see if the pain would intensify. What we found is more pain when bending over but the pain disappears while on his back, hands above head and stretches...he says Mom, it goes away.
So yesterday we had the endo and colon looked at and they are normal? Um ok...the pain is probably from anxiety and that maybe some meds would help that. What they didn't know was that Bruce has been seen by a psychologist. He is fine...well he's mad and that he hates both diseases and he feels like he's been through ringer. Always cheerful most of the day. He's mad and I can't blame him and who wouldn't have some anxiety...we were prepping him for a colostomy....and he was accepting...I took it upon myself for him to be seen...it was alot. So we do EMDR. This is Eye Movement Desensitization Reprocessing. It's a therapy for people who have PTSD or Post Traumatic Stress Disorder. It's an incredible therapy. With kids it helps to move the clutter that forms in our head from one side of the brain to the other. As adults we can carry a lot of baggage over the years. We sweep things under the rug for years and not let things bother us and then one day you fall apart when the pizza gets burned. Were not crying over the pizza, were crying over whatever we swept under the rug and didn't deal with at that time. Then psychologist tries to peel away the layers to get to the root of the problem and that can take years. When you know what that big factor is in your life this helps...EMDR helps to move the lingering feelings and helps process it...it's an incredible tool. Our doctor says it's like this...your in a scary wood...well you can walk out or you can run like hell. Which do you prefer..for me...run like hell. EMDR helps to speed therapy up. For kids, they don't have the years of baggage like an adult so the therapy works even quicker..don't have peel all those layers back. Bruce is angry. angry that he can't do some of the things he wants to do. He's 10. Most days he will put his illness on the back burner and go. Yes he will pay for it that night or the next morning with his arthritis. The UC is a little bit different. He can't run far..it hurts to run...If it was anxiety it would come and go...his pain has gotten increasingly more painful as his prednisone wears off. By the end of the day and this has been everyday...he is exhausted by the time he goes to sleep. This pain he has in his gut he deals with and pushes it out of his mind, exhausts him and makes him wary by the time he goes to bed. This is what he's mad at....and maybe a bit insulted. He knows the difference between anxiety of oh I just got in trouble and I'm screwed! Those were his words to me. This is pain. He doesn't sleep on his stomach...I know I've checked on him through the night, it hurts. You would have to be consciously aware not to do that. I think clinically if a doctor can't see it on a test they will assume it's psychological. I'm not mad at the dr...just want the dr to go a bit further...well we have done that and our psychologist says he's good and strong, does he have anxiety? Yes? I would. But not to the point of needing medication.
Bruce and I are going on a plane trip to Ohio! Yup, we had to cancel a trip to the keys,(Bruce didn't know) we will go later in the summer. Cincinnati Children's Hospital is one of the best places for gastro. We had the best of luck to get to see this doctor in a very short amount of time. We leave on the 29th of May and come back on the 1st. This doctor wants to do a test called MRI enteroscopy. Trying to figure what this is..but I think he's gonna check out his small intestines. I'm grateful that this man has called to ask if we have done certain testing and even asked if we could ask the doctor who did the scope yesterday to do 2 more tests. The dr complied as he knows we are getting a second opinion. So I'm happy we get to go to Ohio. Bruce is too! Whatever pain he has is real. We know anxiety an pain can go hand in hand...but I think it would be a general pain in his gut. When motions and movement come into play, not to mention distention of his belly, I think were overlooking something. The new dr is wondering if he has crohns disease. So we shall see.
a continuation...Drs dont Listen!
After talking to a Nurse Practioner after hours...and getting no where, they dont call in pain meds for kids who have bad stomach pain...actually they dont call it in for anyone. Bruces pain was a 12 when pushed and a 10 1/2 when just sitting there. I think what happens to Bruce is that he tries to occupy his mind during the day,for example we are making a very big pirate ship and are playing a lot of video games. He deals with this pain all thru the day with cheerfulness then to get to the late afternoon early evening exhausted and either irritable, quiet or crying due to pain. It has taken a toll on him. Well all of us. My hubby called the drs this morning and we are getting ready to do a CT with Barium and Contrast and well...another colonoscopy.
See they dont listen to parents...oh it must be constipation...when he hasnt had a solid bowel movement in weeks. It is literally water. It doesnt get thru to them. Not all kids are the same, Bruce has a tendency to have same UC symptoms as an adult. Im sorry its not in your little box, please think outside the box for Bruce. Give this child a break. His stools are nothing but water due to needing to make it this way so his colon would shrink...and it has. Well it might by viral or it might be that he has a lot of anxiety...hell ya on the anxiety part! But anxiety does not make his stomach hurt so bad hes holding his breath!
But guess what??? Stool cultures came back positive for blood/inflammation... Really?...but that could be from constipation from the stool...OH MY GOD! SHut up! There is no stool to scrape the sides...whatever he eats is there for me to see later that day. STOP AND LISTEN!!!
See they dont listen to parents...oh it must be constipation...when he hasnt had a solid bowel movement in weeks. It is literally water. It doesnt get thru to them. Not all kids are the same, Bruce has a tendency to have same UC symptoms as an adult. Im sorry its not in your little box, please think outside the box for Bruce. Give this child a break. His stools are nothing but water due to needing to make it this way so his colon would shrink...and it has. Well it might by viral or it might be that he has a lot of anxiety...hell ya on the anxiety part! But anxiety does not make his stomach hurt so bad hes holding his breath!
But guess what??? Stool cultures came back positive for blood/inflammation... Really?...but that could be from constipation from the stool...OH MY GOD! SHut up! There is no stool to scrape the sides...whatever he eats is there for me to see later that day. STOP AND LISTEN!!!
Sunday, May 13, 2012
Wait AND See
We got the results back from the MRI and I guess the gastro was scratching his head as to why there wasn't any inflammation. No thickening or scaring...well he's only had 2/3 flares. From what I read early stages of ulcerative colitis doesn't need to show any scarring or thickening. So we decided to do another Colonoscopy and get a couple more tissue samples to rule everything out. Stool cultures and blood tests were done too. After the colonoscopy the Gastro came in and explained that his colon looked perfect and that there was no need to remove his colon??? The medicine must have started to kick in (after 30/40mg orally then 60mg IV for 10 days then 30 for 2 weeks, hes been on it since mid Feb. Well' isn't that what we came home to do? get his colon less inflamed so the surgeon had better tissue to work with? The surgeon and the Chief of Surgery were completely confused as to why he was not getting surgery. Its got to come out. Colon rectal cancer will be a good possibliity within 8 years. Im trying to keep my kid from having a permanant bag. If surgeon has good tissue a j pouch is created and 8 weeks later bag is removed and he is reattched. Per our Dr we were to go in to Bruces room and see him and be very excited that he didn't have to get his colon removed? OK, I'm sorry but I just can't do that...what the hell happend? We prepared our whole family. On our way home the next day my son told me that we were full of CRAP! And yes I believe he's right. He said that we were full of crap because he knows his gut and his gut is saying it's got to come out! I agreed with him.
It took me a couple of days for this situation to sink in.
When I called, I think they thought I should be grateful that his colon didn't need to be removed....now I am grateful...but he does have Ulcerative Colitis and it does run through his whole colon so are we delaying the inevitable? The surgeon thought so. I keep getting asked...do you want this colon removed? This is coming from the gastro dr who said it needed to be removed...because we should have gratitude in our hearts? Well NO! I don't want his colon removed...but gastro office were the ones that said gee were surprised that he had a flare because he's taking remicade 300mg every 3 weeks... So because the prednisone is working and keeping the inflammation down in his colon we won't worry about the Remicade, which will most likely stop working when his prednisone is completely tapered. Bruces meds seem to stop working at about 3 months...this is his track record. Last October his meds started to fail so we increased the remicade to 300mg and every 3 weeks.
Once again I hate prednisone. Bruce went to eye Drs office today to check on his pressure. He's up to 25 and there's marginal problem with the nerve in the back of the eye. This is caused from the prednisone. So although the prednisone is keeping the colon some what clean it's messing with his eyes.
I really wish that a dr would look at my child as a whole. I have alot of what if questions...what if remicade stops working. What if his UC starts to flare again? Will he be back in the hospital for a longer stay, 1st time was 5 days... 2nd time 10 and on prednisone a lot longer. Will the prednisone cause permanent problems with his eyes..the answer is yes to that one. I can't confirm anything else when asking all these questions, well if I had a crystal ball I would tell you...? Really, that's all you got? Yes but we were all so happy that his colon looked well? Well i was dumbfounded as was my husband...we were perplexed that he had 2 dates for surgery set. The big question I have is what if he flares and the colon doesn't look as well as it does now so when it is removed the surgeon won't have a lot to work with. But don't go there cuz we don't know the future. Well I have a lot of questions that no one wants to answer. It's very easy to say all this because as a dr they can hang up the phone and go home. Hes taking double doses of Myralax and his stools are nothing but water...His bowels don't move unless on this dose, dr says it's due to enlarged colon but I think it's just not moving. Bruce went from a 3 to a 6 and now to an 8. Last Monday he just started crying out of the blue...he told me his stomach pain had increased. I think as a mother there are times when you just lose it. That day was the day. I can't just keep patting Bruce on the head and telling him how sorry I am that he's walking around with a stomach ache and to try to forget it. Were not talking about just a belly ache. The kid is in pain, its not fare...we owe Bruce more. Called dr office and dr called me back within 20 minutes because I was a bitch...that I'm done and can't continue doing this to Bruce. Xray was taken and stool samples were picked up....xray was negative for enlarged colon and stool and gas on xray looked normal. We are waiting back on the occult blood, c-dyf, and the calprotectin cultures which have been taken 3 times and even biopsied. Bruces pain was bad thursday night, he was holding his breath... I know he hurting now...called the dr office after hours. I'm sorry there's nothing I can do, I'm from the other office and don't know his chart...WTF! Really? She says to try a heating pad...sorry but go fuck yourself...yes sadly this is what I told her and what the hell was she doing for anybody. Yes sorry. lost it. Wasn't one of my better moments. I honestly think the dr doesn't know what to do with us. Unfortunately he will wait to see him bleed in another full flare. I feel sorry for whoever will be in that room when that happens. If it does we are compromising surgery and having good tissue to work with.
He had another dose of remicade on this past Thursday...same day as intense pain so I think its pretty obvious that the remicade is doing nothing for his UC. The dr says he not sure if it's inflammation...well I gave Bruce Tramadol on Friday night...and guess what? His belly pain subsided to a six. So what the hell does that mean...yes that there is inflammation...my God,Bruce even knew it..
We have been in contact with Cincinnati Childrens Hospital. They are number one in the nation for gastro problems. The dr said he would see Bruce very quickly(next week and half) and that we would speak to chief of surgery while their as well. We find out Monday when we can see this new Dr..we got lucky...right place at right time to meet this Dr. So finally hoping to get answers and to get Bruce some relief. Giving tramadol is not the answer. Taking his colon out is not the answer either unless necessary. I just can't take that chance of Bruce bleeding again which is probably going to happen. I'm trying to prevent a child from wearing a bag for the rest of his life...and if thats making me a bitch, I don't give a damn. I'm tired of watching my child drown.
It took me a couple of days for this situation to sink in.
When I called, I think they thought I should be grateful that his colon didn't need to be removed....now I am grateful...but he does have Ulcerative Colitis and it does run through his whole colon so are we delaying the inevitable? The surgeon thought so. I keep getting asked...do you want this colon removed? This is coming from the gastro dr who said it needed to be removed...because we should have gratitude in our hearts? Well NO! I don't want his colon removed...but gastro office were the ones that said gee were surprised that he had a flare because he's taking remicade 300mg every 3 weeks... So because the prednisone is working and keeping the inflammation down in his colon we won't worry about the Remicade, which will most likely stop working when his prednisone is completely tapered. Bruces meds seem to stop working at about 3 months...this is his track record. Last October his meds started to fail so we increased the remicade to 300mg and every 3 weeks.
Once again I hate prednisone. Bruce went to eye Drs office today to check on his pressure. He's up to 25 and there's marginal problem with the nerve in the back of the eye. This is caused from the prednisone. So although the prednisone is keeping the colon some what clean it's messing with his eyes.
I really wish that a dr would look at my child as a whole. I have alot of what if questions...what if remicade stops working. What if his UC starts to flare again? Will he be back in the hospital for a longer stay, 1st time was 5 days... 2nd time 10 and on prednisone a lot longer. Will the prednisone cause permanent problems with his eyes..the answer is yes to that one. I can't confirm anything else when asking all these questions, well if I had a crystal ball I would tell you...? Really, that's all you got? Yes but we were all so happy that his colon looked well? Well i was dumbfounded as was my husband...we were perplexed that he had 2 dates for surgery set. The big question I have is what if he flares and the colon doesn't look as well as it does now so when it is removed the surgeon won't have a lot to work with. But don't go there cuz we don't know the future. Well I have a lot of questions that no one wants to answer. It's very easy to say all this because as a dr they can hang up the phone and go home. Hes taking double doses of Myralax and his stools are nothing but water...His bowels don't move unless on this dose, dr says it's due to enlarged colon but I think it's just not moving. Bruce went from a 3 to a 6 and now to an 8. Last Monday he just started crying out of the blue...he told me his stomach pain had increased. I think as a mother there are times when you just lose it. That day was the day. I can't just keep patting Bruce on the head and telling him how sorry I am that he's walking around with a stomach ache and to try to forget it. Were not talking about just a belly ache. The kid is in pain, its not fare...we owe Bruce more. Called dr office and dr called me back within 20 minutes because I was a bitch...that I'm done and can't continue doing this to Bruce. Xray was taken and stool samples were picked up....xray was negative for enlarged colon and stool and gas on xray looked normal. We are waiting back on the occult blood, c-dyf, and the calprotectin cultures which have been taken 3 times and even biopsied. Bruces pain was bad thursday night, he was holding his breath... I know he hurting now...called the dr office after hours. I'm sorry there's nothing I can do, I'm from the other office and don't know his chart...WTF! Really? She says to try a heating pad...sorry but go fuck yourself...yes sadly this is what I told her and what the hell was she doing for anybody. Yes sorry. lost it. Wasn't one of my better moments. I honestly think the dr doesn't know what to do with us. Unfortunately he will wait to see him bleed in another full flare. I feel sorry for whoever will be in that room when that happens. If it does we are compromising surgery and having good tissue to work with.
He had another dose of remicade on this past Thursday...same day as intense pain so I think its pretty obvious that the remicade is doing nothing for his UC. The dr says he not sure if it's inflammation...well I gave Bruce Tramadol on Friday night...and guess what? His belly pain subsided to a six. So what the hell does that mean...yes that there is inflammation...my God,Bruce even knew it..
We have been in contact with Cincinnati Childrens Hospital. They are number one in the nation for gastro problems. The dr said he would see Bruce very quickly(next week and half) and that we would speak to chief of surgery while their as well. We find out Monday when we can see this new Dr..we got lucky...right place at right time to meet this Dr. So finally hoping to get answers and to get Bruce some relief. Giving tramadol is not the answer. Taking his colon out is not the answer either unless necessary. I just can't take that chance of Bruce bleeding again which is probably going to happen. I'm trying to prevent a child from wearing a bag for the rest of his life...and if thats making me a bitch, I don't give a damn. I'm tired of watching my child drown.
Saturday, April 7, 2012
Trying To Keep Track
Bruce has had some problems since hes been home from the hospital, he just doesn't have a bowel movement, he doesn't go unless hes on double doses of Myralax. On this particular day he wasn't hungry, which is odd due to him taking prednisone. He had a biofeedback session and when we left the office he broke out into a sweat and said he was gonna be sick..it hit me that he wasn't asking for something to eat and when he did eat it wasn't much. Gastro asked me to get an Xray to make sure there was no blockage. Of course it was a Friday, March 23 at 4:45. Went to Urgent Care and it showed he had a lot of stool. So every hour a double dose of myralax. 3 hours later, nothing. Still felt nauseated going to bed that night, next morning after 2 more double doses of myralax he finally went...just a bit! Over that weekend he started going and the pain in his gut was subsiding...We see Gastro Dr on Monday...
Monday we get to Dr's office and he still thinks Bruce is inflamed and that the intestines just don't know what to do. I ask about Mega colon...but he says you have to look really sick and that your kid just isn't well. I didn't think Bruce had Toxic Mega colon...just Mega colon. His intestines are too stretched out, so it doesn't know when to have a bowel movement. I still think its what he has and yes along with inflammation, hes just a mess. Bruce has been trying to taper off of the prednisone...he got down to 20 then had to back it up to 30 again due to bleeding. On the 26th his Gastro Dr. recommended a very slow taper, but felt that Bruce was going to hit a ceiling and that he didn't see him getting past 10mg of the prednisone, this is being hopeful. Bruce is on 30/20 of prednisone every other day. Monday he starts 20mg for the week and then 15 the following week...if he makes it. Crossing our fingers that he does. Surgery is still out there and the less prednisone the better. His arthritis has been acting up. Probably due to not being on Celebrex and the Remicade not working like it did. I hate prednisone. For Bruce, when we taper off of prednisone, whatever medication hes on no longer works for him...since Remicade is not working to its full potential now...I will assume it will not work at all once... or if he gets off the prednisone...before surgery.
We got to talk to the surgeon and I like him so much. Not a man of many words but he just has this ease about him. We went over the whole procedure. Open Colostomy with stoma and making of a J-Pouch which will be in place of his rectum. He will remove all of colon... from rectum...about 1cm from anus up to the ilium. Create J-pouch, attach small intestine to create stoma for bag. 7 to 10 days in the hospital. Expect about 3 weeks of hard times and if healing goes well then..at 8 weeks to reattach the small intestine to the J-Pouch. Another 7 to 10 days in hospital. 3 to 6 months after 2nd surgery expect alot of stools per day, until the J-pouch expands and the body gets used to this new way of going...eventually the stools wont be so watery.
There were some questions I had to ask that were hard. Is there a possibility of a permanent bag? Will Bruce be able to have children? Will he be ok being under 4-5 hours? And yes...death. I hate the questions I asked.... and yes there are always possibilities but all questions I asked have 99.9% positive outlooks. The surgeon saw no trouble because Bruce has had this disease for only a year. Dr H said that he would get together with Dr. W to see if they could block out a date for this surgery. We left and my husband and I felt comfortable with this visit and this surgery. Except for the possibility of a naso gastric tube being placed the day before surgery. To clean Bruce out...the liquid that he would have to drink is like "antifreeze", most kids cant drink it...So we shall see. I heard its not pleasant to put in a naso gastric tube. We shall see. We got a call on the way home to schedule an MRI with small bowel follow through...expect a long day!
That week Bruce developed a rash on both knees, the sides of each leg and on both elbows..not directly on elbows but up and down the underside of each arm. Benedryl didn't do a thing for it. Weird to be symmetrical. I forget that hes still a kid and he can get a virus. So pics were given to Dr N, and Dr W. And he was checked for CMV by stool sample and labs. CMV can wreck havoc on the gut. So we are ruling all out before he has this surgery. I think this was the last thing to rule out. This is not something the Dr's want to do but it needs to be done.
His MRI was this past Wednesday, started at 11:30 and out by 3:00...1008 pics. I did get to see by chance Dr. R, the anaesthesiologist who did Bruce's colonoscopy. I liked this Dr. too. I find out hes one of the Cardiac Anaesthesiologist, only 2 in the hospital. I feel good about talking with him. He thought Dr H the surgeon would do an excellent job and that "hes your man", He was very good with Bruce that morning of his colonoscopy and that I could request him, just let Dr H's office know. Feel like things are falling into place...Feel a bit more in control. Hubby called yesterday to ask about the MRI results but the NP didn't want to read us the results except to say he had a lot of stool and to double up on Myralax. We talk to Dr W on Monday when all reports are back.
Monday we get to Dr's office and he still thinks Bruce is inflamed and that the intestines just don't know what to do. I ask about Mega colon...but he says you have to look really sick and that your kid just isn't well. I didn't think Bruce had Toxic Mega colon...just Mega colon. His intestines are too stretched out, so it doesn't know when to have a bowel movement. I still think its what he has and yes along with inflammation, hes just a mess. Bruce has been trying to taper off of the prednisone...he got down to 20 then had to back it up to 30 again due to bleeding. On the 26th his Gastro Dr. recommended a very slow taper, but felt that Bruce was going to hit a ceiling and that he didn't see him getting past 10mg of the prednisone, this is being hopeful. Bruce is on 30/20 of prednisone every other day. Monday he starts 20mg for the week and then 15 the following week...if he makes it. Crossing our fingers that he does. Surgery is still out there and the less prednisone the better. His arthritis has been acting up. Probably due to not being on Celebrex and the Remicade not working like it did. I hate prednisone. For Bruce, when we taper off of prednisone, whatever medication hes on no longer works for him...since Remicade is not working to its full potential now...I will assume it will not work at all once... or if he gets off the prednisone...before surgery.
We got to talk to the surgeon and I like him so much. Not a man of many words but he just has this ease about him. We went over the whole procedure. Open Colostomy with stoma and making of a J-Pouch which will be in place of his rectum. He will remove all of colon... from rectum...about 1cm from anus up to the ilium. Create J-pouch, attach small intestine to create stoma for bag. 7 to 10 days in the hospital. Expect about 3 weeks of hard times and if healing goes well then..at 8 weeks to reattach the small intestine to the J-Pouch. Another 7 to 10 days in hospital. 3 to 6 months after 2nd surgery expect alot of stools per day, until the J-pouch expands and the body gets used to this new way of going...eventually the stools wont be so watery.
There were some questions I had to ask that were hard. Is there a possibility of a permanent bag? Will Bruce be able to have children? Will he be ok being under 4-5 hours? And yes...death. I hate the questions I asked.... and yes there are always possibilities but all questions I asked have 99.9% positive outlooks. The surgeon saw no trouble because Bruce has had this disease for only a year. Dr H said that he would get together with Dr. W to see if they could block out a date for this surgery. We left and my husband and I felt comfortable with this visit and this surgery. Except for the possibility of a naso gastric tube being placed the day before surgery. To clean Bruce out...the liquid that he would have to drink is like "antifreeze", most kids cant drink it...So we shall see. I heard its not pleasant to put in a naso gastric tube. We shall see. We got a call on the way home to schedule an MRI with small bowel follow through...expect a long day!
That week Bruce developed a rash on both knees, the sides of each leg and on both elbows..not directly on elbows but up and down the underside of each arm. Benedryl didn't do a thing for it. Weird to be symmetrical. I forget that hes still a kid and he can get a virus. So pics were given to Dr N, and Dr W. And he was checked for CMV by stool sample and labs. CMV can wreck havoc on the gut. So we are ruling all out before he has this surgery. I think this was the last thing to rule out. This is not something the Dr's want to do but it needs to be done.
His MRI was this past Wednesday, started at 11:30 and out by 3:00...1008 pics. I did get to see by chance Dr. R, the anaesthesiologist who did Bruce's colonoscopy. I liked this Dr. too. I find out hes one of the Cardiac Anaesthesiologist, only 2 in the hospital. I feel good about talking with him. He thought Dr H the surgeon would do an excellent job and that "hes your man", He was very good with Bruce that morning of his colonoscopy and that I could request him, just let Dr H's office know. Feel like things are falling into place...Feel a bit more in control. Hubby called yesterday to ask about the MRI results but the NP didn't want to read us the results except to say he had a lot of stool and to double up on Myralax. We talk to Dr W on Monday when all reports are back.
Saturday, March 24, 2012
YES! Yes It Can Get A Lot Worse
Wow, it's been a long time since I've written. I haven't written in a while because...well I guess we were doing pretty well, besides the fact of having arthritis stuff come up. Bruce flared in December and January. Wasn't able to walk due to his SI Joints and pelvis/hip weakness. Confirmed through a pediatric orthopedic back doctor that it was not neurological, but yes his inability to walk at times is due to flares in these areas which is when we can see his medication not working. Bruce started Remicade last year around June. He was taking 200mg every 4 weeks. In January we started 300mg of Remicade every three weeks as well as starting on Celebrex. This was an easy fix. We were using Remicade to help control his Arthritis...his Ulcerative Colitis never showed itself for the whole year. We just figured that it would flare eventually but as of this time bowel sounds and regular bowel movements were all good.
Bruce was not acting well in February. Very tired, sleeping late. Just not himself. His joints looked very swollen but he wasn't in any pain and since we were on Celebrex and Remicade every 3 weeks, I thought maybe it was just barometric pressure. One night he said he had a belly ache and the next morning he had a full blown Ulcerative Colitis flare! Just like that no warning, nothing except for the belly ache.So we began the process of trying to control this flare. 30 mg of prednisone was given and Bruce was put on a soft diet. We had to get to the Remicade infusion and doctors felt that this would help greatly. So Bruce ate mash potatoes and bread for a while. It looked like he was trying to get better. His motility went from 12-15 stools a day, down to 1 or 2 with reduced blood and mucus. It was better but not good. His Remicade infusion was on Thursday March 1st. Still had a belly ache. Friday morning he was back to 12 bowel movements and passing a lot of blood. Friday I called the Gastro Dr. and he was going to be admitted to All Children's Hospital...but no beds. So I say...I can do this at home. 60 mg of prednisone, full liquid diet like we did with the onset of the UC last year. Dr said ok, his bowel movements were reduced over that weekend and it looked like his body was trying to get better. Despite our efforts for Bruce
to stay hydrated, he looked ill Sunday morning. Stools were better, still had belly ache and I gave him a couple of Ensures and pedialyte for the day. He felt a bit better and his bowel
movements looked good. I was going to feed him some soft foods Sunday night but decided
against it until the next morning. I think God gives you a special button in your body to
say...somethings wrong! So I got up early to wait for him to get up and he says "mom, I think
you need to take me to the hospital" I really thought he was joking because his motility and
the bleeding was better. Oh how I could of cried. nothing was working... My hands shook.
There was so much blood, what the Hell is going on? I dideverything that was possible. His body was trying to fight it but it couldn't.
The doctor told me to come in so he could be admitted, got my stuff together, called Bruce Sr
and he came home from work. Was at the hospital by 2pm. Bruce was put on 60 mg of IV
prednisone and a liquid diet. His motility was back up to 8 stools that day then 2 on
Tuesday. Tuesday afternoon he was given a lot of Myralax to prepare him for a colonoscopy. I wasn't ready for the outcome.
Wednesday Bruce had his colonoscopy. The DR. came in to tell me that the Ulcerative Colitis has gone through his entire large intestine...from rectum to appendix. Bruce is very young for this and since he as at the top of his medication, there is nothing left for him to try.
THe Dr.W was sorry to tell me that when its like this, Bruce will need to have a Colectomy. He showed me 12 pictures of his intestines and I tried real hard to compose myself but I don't
think anything can keep you from falling apart. I sat and cried. I just couldn't stop. I
called my husband and we both cried. Recovery paged me to say Bruce was up but it took a few minutes to compose myself. So much goes through your head all at once. His whole life... past, present, and future came at me. They were going to get a team of doctors together to
discuss Bruces condition...3 peeds gastros, peeds rheumy, and pediatric surgeon. Each came to
visit me several times to discuss Bruce. My hubby and daughter Katie came down the next day.Surgeon discussed surgery... His whole colon needs to come out! Because he's so young, his chance for Colon Rectal Cancer starts about 20yrs. 5 hours under anesthesia for the first half of surgery. Which scared the Hell out of me. 6-8 weeks or (longer due to prednisone) of healing with a stoma and a bag. Once he's healed they will do the 2nd part of his surgery to reattach the small intestines to the anus and make a jpouch which will act like a rectum. It will take 6 months or longer for his body to adjust.
Bruce spent 2 weeks in the hospital and has come home to prepare for this operation. The goal is to reduce the prednisone as far down as possible. We went from 60 to 20mg but on Tuesday, the 20th he started bleeding again and his prednisone was back to 30mg. We will try to get
back to 20mg by this Monday. It might not be possible to get that low...Surgeon wants less
inflammation and less prednisone but it might not be possible...which is scary for wound
healing. Since he is already on prednisone they will have to give him a very large burst of
prednisone right before his operation so as to not have blood pressure or cardiac problems.It
will be an open colostomy, the dr will use this technique so he sees all instead of a scope.
Better to suture so there's no leakage as infection could set in. There's a strength with
this surgeon. He makes me feel secure in his ability to operate on my child. He did Bruces
muscle biopsy.We have been preparing Bruce for this and I must say...he is ready. It's a
roller coaster for him. I do not lie but slowly explain all to him, the pic line,
nasogastric tube,drainage tubes, and catheter, the bag and the number of bowel movements he
would have until his body readjusts and other complications that could set in. We have looked
at pictures. He will have a scar down his belly but the surgeon said it would be a thin one.
Our days are filled with family and doing as much as Bruce wants to do. He was so excited to have Katie's birthday early so he could be apart of it... My daughter will be 14 on the 31st
of March. I just put her high school courses in. I can't believe how fast it has gone. We
celebrated her birthday on St. Patricks Day. We didn't know what would happen in
between...everything is on standby. She is a gracious young lady who for days didn't know what
to do with herself when knowing what her brother is up against..so healing even before this
event is needed. Even though I have become quiet...it is for my family. It is a reflection of
what has come and what is to come. It's hard to prepare for this and there is no way really
but to have faith and know within your heart that you have done everything you possibly can to help your child and your family. This will be the hardest journey for Bruce and our family. There is change...there's always change but this will bring hope. Hope for a better life for Bruce. It's got to be.
My focus is my family...but when I'm by myself, it's quiet, silence. Someone once told me, if you listen to the silence it talks back to you...and it's true. That calm before a storm let's you prepare for what's coming. Silence helps you to think things through, it makes you listen to your thoughts and put your focus on where it's needed. Everybody in our house needs that extra attention at different times right now...and it's given. In doing this I have found my own calm.
Bruce was not acting well in February. Very tired, sleeping late. Just not himself. His joints looked very swollen but he wasn't in any pain and since we were on Celebrex and Remicade every 3 weeks, I thought maybe it was just barometric pressure. One night he said he had a belly ache and the next morning he had a full blown Ulcerative Colitis flare! Just like that no warning, nothing except for the belly ache.So we began the process of trying to control this flare. 30 mg of prednisone was given and Bruce was put on a soft diet. We had to get to the Remicade infusion and doctors felt that this would help greatly. So Bruce ate mash potatoes and bread for a while. It looked like he was trying to get better. His motility went from 12-15 stools a day, down to 1 or 2 with reduced blood and mucus. It was better but not good. His Remicade infusion was on Thursday March 1st. Still had a belly ache. Friday morning he was back to 12 bowel movements and passing a lot of blood. Friday I called the Gastro Dr. and he was going to be admitted to All Children's Hospital...but no beds. So I say...I can do this at home. 60 mg of prednisone, full liquid diet like we did with the onset of the UC last year. Dr said ok, his bowel movements were reduced over that weekend and it looked like his body was trying to get better. Despite our efforts for Bruce
to stay hydrated, he looked ill Sunday morning. Stools were better, still had belly ache and I gave him a couple of Ensures and pedialyte for the day. He felt a bit better and his bowel
movements looked good. I was going to feed him some soft foods Sunday night but decided
against it until the next morning. I think God gives you a special button in your body to
say...somethings wrong! So I got up early to wait for him to get up and he says "mom, I think
you need to take me to the hospital" I really thought he was joking because his motility and
the bleeding was better. Oh how I could of cried. nothing was working... My hands shook.
There was so much blood, what the Hell is going on? I dideverything that was possible. His body was trying to fight it but it couldn't.
The doctor told me to come in so he could be admitted, got my stuff together, called Bruce Sr
and he came home from work. Was at the hospital by 2pm. Bruce was put on 60 mg of IV
prednisone and a liquid diet. His motility was back up to 8 stools that day then 2 on
Tuesday. Tuesday afternoon he was given a lot of Myralax to prepare him for a colonoscopy. I wasn't ready for the outcome.
Wednesday Bruce had his colonoscopy. The DR. came in to tell me that the Ulcerative Colitis has gone through his entire large intestine...from rectum to appendix. Bruce is very young for this and since he as at the top of his medication, there is nothing left for him to try.
THe Dr.W was sorry to tell me that when its like this, Bruce will need to have a Colectomy. He showed me 12 pictures of his intestines and I tried real hard to compose myself but I don't
think anything can keep you from falling apart. I sat and cried. I just couldn't stop. I
called my husband and we both cried. Recovery paged me to say Bruce was up but it took a few minutes to compose myself. So much goes through your head all at once. His whole life... past, present, and future came at me. They were going to get a team of doctors together to
discuss Bruces condition...3 peeds gastros, peeds rheumy, and pediatric surgeon. Each came to
visit me several times to discuss Bruce. My hubby and daughter Katie came down the next day.Surgeon discussed surgery... His whole colon needs to come out! Because he's so young, his chance for Colon Rectal Cancer starts about 20yrs. 5 hours under anesthesia for the first half of surgery. Which scared the Hell out of me. 6-8 weeks or (longer due to prednisone) of healing with a stoma and a bag. Once he's healed they will do the 2nd part of his surgery to reattach the small intestines to the anus and make a jpouch which will act like a rectum. It will take 6 months or longer for his body to adjust.
Bruce spent 2 weeks in the hospital and has come home to prepare for this operation. The goal is to reduce the prednisone as far down as possible. We went from 60 to 20mg but on Tuesday, the 20th he started bleeding again and his prednisone was back to 30mg. We will try to get
back to 20mg by this Monday. It might not be possible to get that low...Surgeon wants less
inflammation and less prednisone but it might not be possible...which is scary for wound
healing. Since he is already on prednisone they will have to give him a very large burst of
prednisone right before his operation so as to not have blood pressure or cardiac problems.It
will be an open colostomy, the dr will use this technique so he sees all instead of a scope.
Better to suture so there's no leakage as infection could set in. There's a strength with
this surgeon. He makes me feel secure in his ability to operate on my child. He did Bruces
muscle biopsy.We have been preparing Bruce for this and I must say...he is ready. It's a
roller coaster for him. I do not lie but slowly explain all to him, the pic line,
nasogastric tube,drainage tubes, and catheter, the bag and the number of bowel movements he
would have until his body readjusts and other complications that could set in. We have looked
at pictures. He will have a scar down his belly but the surgeon said it would be a thin one.
Our days are filled with family and doing as much as Bruce wants to do. He was so excited to have Katie's birthday early so he could be apart of it... My daughter will be 14 on the 31st
of March. I just put her high school courses in. I can't believe how fast it has gone. We
celebrated her birthday on St. Patricks Day. We didn't know what would happen in
between...everything is on standby. She is a gracious young lady who for days didn't know what
to do with herself when knowing what her brother is up against..so healing even before this
event is needed. Even though I have become quiet...it is for my family. It is a reflection of
what has come and what is to come. It's hard to prepare for this and there is no way really
but to have faith and know within your heart that you have done everything you possibly can to help your child and your family. This will be the hardest journey for Bruce and our family. There is change...there's always change but this will bring hope. Hope for a better life for Bruce. It's got to be.
My focus is my family...but when I'm by myself, it's quiet, silence. Someone once told me, if you listen to the silence it talks back to you...and it's true. That calm before a storm let's you prepare for what's coming. Silence helps you to think things through, it makes you listen to your thoughts and put your focus on where it's needed. Everybody in our house needs that extra attention at different times right now...and it's given. In doing this I have found my own calm.
Sunday, April 3, 2011
CAN NOT GET ANY WORSE
Its been a while since I wrote. With homeschooling and Bruce's illness its been a little stressful. We were doing well on the Enbrel shots and the NSAID Piroxacam, but we were having stomach issues. He was hurting every night before he went to bed....Almost like it took one of the drugs 24 hrs to get to the part that was hurting him. At first we thought he was just trying to stay up late, but about an hour later he would be fine. One night it was real bad and our Rheumy Dr. N told us to stop the piroxacam b/c it sounded like that would be the cause. Bruce started to have bowel movements with blood, clots, and coffee grounds and going up to 9 times a day. Bruce had an Endo/Colonoscopy on February 23rd and it was confirmed that he had Ulcerative Colitis from the rectum up to the sigmoid of the left colon. We were sent home with prednisone and Asacol to try to reduce the inflammation. This was not caused by the meds that he was taking. It is another auto immune disease. Juvenile Spondylitis and Ulcerative Colitis can go hand in hand together. Its just a matter of which one is going to show itself first. That following Monday we were admitted to the hospital due to the amount of blood and inflammation his colon had. Bruce didn't eat for 4 days and finally his bowel movements showed no sign of visible blood. Saturday we were on our way home. It was a long stay and I didn't realize how much it sucks the life right out of you. We were happy to be home. That Sunday I took him to an Urgent Care for a dx of Bronchitis and had to cancel his Oriencia IV infusion for that Tuesday. We went on the 15th and so far all has been much better. We are being careful with his immune system due to the amount of prednisone he has been taking which is 60mg and that the Oriencia has weakend his immune system. He also is taking Asacol for his UC and Canasa(asacol suppositiry) to calm the inflammation down. He can not have Fruits and Veggies or seeds of any kind nor any thing high in fiber. I remembered that his eye Dr. had wanted to see him if he ever was on a large amount of prednisone. He only had taken prednisone in the beginning to help his joints but it didn't work. It doesn't work on some kids. Gastro Dr. said it wouldnt help his joints but it will for the Ulcerative Colitis. Thank God it did. I had a bad feeling about seeing the eye doctor. Just did. Sure enough his pressure in both eyes was high and he now has Glaucoma which I am giving him a Beta Blocker eye drop 2xs a day. Prednisone is a nasty drug but a necessity. No damage to the eye but I now have to see eye Dr. every 2-3 weeks. Currently we are on a 10 week taper of the Prednisone. We are at the 40/30mg week which ends Friday. The following week he will be on just 30mg then following to 30/20 and then 20mg and hoping we can get to the end without anything stopping us. If signs of bleeding come back we up his prednisone again for a week then try to taper again. If these meds don't work we have to look at Remicade Infusions. So far the Oriencia is working well for his Juvenile Spondylitis but since both the high dose of prednisone and the Oriencia were started about the same time we don't know what to expect. We just have to hope and take one day at a time.
Bruce is in good spirits despite the change in his appearance. Prednisone justs bloats you out and it is a bit of a change for him to look in the mirror. He holds my hand a lot when we walk every morning. It helps his stomach and face so it wont bloat so much. Actually he doesn't let go. This makes me sad and happy all at the same time. Happy because it doesn't bother him to hold my hand and sad that hes 9 and is afraid of letting go and I tell him I have him for life and he can rely on me to get him through this and he is thankful. I am overwhelmed at my son having to deal with another auto immune disease, Ulcerative Colitis is for life with hopefully long remissions. I often wonder what his adult life will be like for him as I show him how to get through this part of his life now. I can honestly say that I have never met a more stronger individual than my child. Oh how hes grown and what he knows. Too much about medicines and doctors and pain, and just plain being scared but looking at it head on and saying "bring it on".
I got mad one night a few weeks ago. I was so busy helping Bruce and being at the hospital that I forgot to mourn one more illness. We haven't even really had time to adjust to the Juvenile Spondylitis because all drugs were not working and the Ulcerative Colitis popped up then add the Glaucoma and I don't think I ever cried as hard as I did. I was so
Bruce's next infusion is on the 12th of April and we will have tapered the prednisone down to 30mg by then. Hoping that we finally have things under control and lesson the glaucoma he has at this time. Our goal is to have Bruce on all meds that will work for him with no setbacks. These past 2 months have been hard on Bruce and our family but if we can just keep these illnesses in control, Bruce will be in great shape.
Bruce is in good spirits despite the change in his appearance. Prednisone justs bloats you out and it is a bit of a change for him to look in the mirror. He holds my hand a lot when we walk every morning. It helps his stomach and face so it wont bloat so much. Actually he doesn't let go. This makes me sad and happy all at the same time. Happy because it doesn't bother him to hold my hand and sad that hes 9 and is afraid of letting go and I tell him I have him for life and he can rely on me to get him through this and he is thankful. I am overwhelmed at my son having to deal with another auto immune disease, Ulcerative Colitis is for life with hopefully long remissions. I often wonder what his adult life will be like for him as I show him how to get through this part of his life now. I can honestly say that I have never met a more stronger individual than my child. Oh how hes grown and what he knows. Too much about medicines and doctors and pain, and just plain being scared but looking at it head on and saying "bring it on".
I got mad one night a few weeks ago. I was so busy helping Bruce and being at the hospital that I forgot to mourn one more illness. We haven't even really had time to adjust to the Juvenile Spondylitis because all drugs were not working and the Ulcerative Colitis popped up then add the Glaucoma and I don't think I ever cried as hard as I did. I was so
Bruce's next infusion is on the 12th of April and we will have tapered the prednisone down to 30mg by then. Hoping that we finally have things under control and lesson the glaucoma he has at this time. Our goal is to have Bruce on all meds that will work for him with no setbacks. These past 2 months have been hard on Bruce and our family but if we can just keep these illnesses in control, Bruce will be in great shape.
Monday, January 17, 2011
MEDICATION AND MOMS
I knew I loved the Moms on Facebook a couple of months back when I joined but I didn't realize how much until yesterday. See...A mom was asking how we handle a person who has strong negative feelings about the medications we use for our children who have Juvenile Arthritis. After 40 something comments to this I realized that each and every mom on this site was the same. We all had the same feelings...All of us. We all handle these type of people pretty much the same...but we walk away feeling a little bit hurt and annoyed that someone would think ill of us for putting such strong medications into our children. What we need is understanding and compassion and to walk a mile in our shoes. Its very easy to give advice. This women had and still does have arthritis, she says that all you need to give to your child is vitamins and aspirin and not to give all these poisons. When she was little maybe that's all she needed. At that time they didn't have anything else to give to these kids. They lumped arthritic kids into one big diagnosis. Now we realize that there are so many types of JA. Doctors now follow a protocol because each child is different and the severity of the disease is different. The Dr.s make sure after a 12 week period that the current drug is not working in order to go to something stronger. Because there is nothing definitive about this disease we start with NSAIDS first not aspirin and work into the harder drugs only after the other drugs have been ruled out. Giving aspirin to a child as one mom said can cause Reyes syndrome which can cause harm to the child. They say that some kids do OK with just the NSAIDs alone. They don't need anything else. I would give anything to only have my child on an NSAID.
We had to add Benedryl to Bruce's weekly medication. Its such a simple drug and does wonders for allergies, bug bites etc. Bruce gets 2 pills a half hour before his shots on Wednesday and Thursday nights. We changed shot sites to his belly and he gets intense itching and a very ugly welt. 1 pill doesn't touch it and 2 pills barely touch it. With the Benedryl the itching is cut down to about 45min instead of the usual 2 hours. Bruce says the itching is still really bad, hes got to be moving or doing something to try to keep his mind off of the itch. I hate this. I hate to see my son in this loopy state. I hate that I have to give him another drug, even though for many of us its a drug that is often used for the simplest things. Do I have a choice? Yes, I do. I can let Bruce handle the itch for 2 hours and watch him dance around almost in tears because of an allergic reaction or I can help him. This is the third medication that I had to give to Bruce to counteract the medication that he needs. He takes Enbrel and Piroxacam because he has to for the arthritis and Prilosec, Myralax and now Benedryl for the side effects of the previous two. Constipation, ulcers and site reactions Im trying to prevent, because the Enbrel and the Piroxacam is working. If it wasn't for the Enbrel, Bruce would be in a wheelchair. A WHEELCHAIR!
In the beginning we tried fish oil which he still takes, probiotics which he still takes vitamins, minerals, Epsom Salt baths, massage, change of diet...you name it. I spent countless hours doing research and trying everything and anything hoping something would work. Trust me , I had 6 months for all the oils, vitamins, and diet to work and I know all too well of the dangers of the medication that he is taking now. I think about it everytime I give Bruce his shot....Do I have a choice? Yes. To see Bruce in a wheelchair and in pain or to have him walking.
If you don't live with a child who has this illness, its very hard to understand. If you don't see it everyday you don't understand. Trying to explain it, is very hard. Everyone has an opinion. Do I listen, I do, unless I feel it starting to get ugly, which it has. I make a decision to stand up for my child and teach or to walk away with my tail between my legs. I've done both. Depends on the day. Some days my outer shell is tougher than other days. I don't like being picked on and I know all too well about that. If I was talking to my parents(which I'm not), I'm sure they would think I did something wrong. He has arthritis because of something I did...Unbelievable, but that's my parents. You would think that parents would be supportive. Not mine. I think most parents are very supportive. Its what we need. I worry, worry worry about all sorts of things. Last night I went to bed thinking Katie could get this and can there kids get JA. I guess yesterdays topic made me upset on so many levels. But the one thing that made me feel great was that I'm not wrong on how I think. All these moms felt the same and that was very reassuring. I think to help us is to support and try to understand . In a course of a few weeks moms and dads are taking kids to have some type of surgery, changing medications, dealing with their kids pain which is heartbreaking, going to Dr. appointments, Rheumatologists, Gastroentrologists
We had to add Benedryl to Bruce's weekly medication. Its such a simple drug and does wonders for allergies, bug bites etc. Bruce gets 2 pills a half hour before his shots on Wednesday and Thursday nights. We changed shot sites to his belly and he gets intense itching and a very ugly welt. 1 pill doesn't touch it and 2 pills barely touch it. With the Benedryl the itching is cut down to about 45min instead of the usual 2 hours. Bruce says the itching is still really bad, hes got to be moving or doing something to try to keep his mind off of the itch. I hate this. I hate to see my son in this loopy state. I hate that I have to give him another drug, even though for many of us its a drug that is often used for the simplest things. Do I have a choice? Yes, I do. I can let Bruce handle the itch for 2 hours and watch him dance around almost in tears because of an allergic reaction or I can help him. This is the third medication that I had to give to Bruce to counteract the medication that he needs. He takes Enbrel and Piroxacam because he has to for the arthritis and Prilosec, Myralax and now Benedryl for the side effects of the previous two. Constipation, ulcers and site reactions Im trying to prevent, because the Enbrel and the Piroxacam is working. If it wasn't for the Enbrel, Bruce would be in a wheelchair. A WHEELCHAIR!
In the beginning we tried fish oil which he still takes, probiotics which he still takes vitamins, minerals, Epsom Salt baths, massage, change of diet...you name it. I spent countless hours doing research and trying everything and anything hoping something would work. Trust me , I had 6 months for all the oils, vitamins, and diet to work and I know all too well of the dangers of the medication that he is taking now. I think about it everytime I give Bruce his shot....Do I have a choice? Yes. To see Bruce in a wheelchair and in pain or to have him walking.
If you don't live with a child who has this illness, its very hard to understand. If you don't see it everyday you don't understand. Trying to explain it, is very hard. Everyone has an opinion. Do I listen, I do, unless I feel it starting to get ugly, which it has. I make a decision to stand up for my child and teach or to walk away with my tail between my legs. I've done both. Depends on the day. Some days my outer shell is tougher than other days. I don't like being picked on and I know all too well about that. If I was talking to my parents(which I'm not), I'm sure they would think I did something wrong. He has arthritis because of something I did...Unbelievable, but that's my parents. You would think that parents would be supportive. Not mine. I think most parents are very supportive. Its what we need. I worry, worry worry about all sorts of things. Last night I went to bed thinking Katie could get this and can there kids get JA. I guess yesterdays topic made me upset on so many levels. But the one thing that made me feel great was that I'm not wrong on how I think. All these moms felt the same and that was very reassuring. I think to help us is to support and try to understand . In a course of a few weeks moms and dads are taking kids to have some type of surgery, changing medications, dealing with their kids pain which is heartbreaking, going to Dr. appointments, Rheumatologists, Gastroentrologists
Subscribe to:
Posts (Atom)