I cant really say that Bruce is doing better. I cant tell. Since we came back from the National Institute of Health and saw Dr. Colbert, his upper back between the shoulder blades started to hurt along with his lower back and knees. The trapezoids into his neck were really tight. Anthony, Bruce's physical therapist just didnt understand why his back wouldn't let up? He kept asking... why? Nothing helps,stretching, massage, Flexeril, NSAID, Tramadol, Neurontin, Heat, Cold, spa,...nothing helps. The massage and heat helps for the time its happening but then it just comes back. I wish I could wave a magic wand and wave it all away. I wish it were that easy. Sadly its not. We try to stay optimistic. We really do. Most days hes good and just deals with all this crap. I am happy to say that Bruce did not have to use his wheelchair this past fall and winter. We only used his wheelchair when we went to Washington, D.C.. Bruce's legs get very tired and the wheelchair is a good thing to have. We take it on every trip just in case.His legs seem a bit better. So no wheelchair and he still had the use of his legs... He still gets tired and stiff but its different. Hes traded one thing for another. Hes walking more but now he cant twist. The one thing he loves the most is Golf. Yes hes my kid and I can say that hes really good...but he is really good. His golf coach Wally was a pro PGA golfer. We got lucky to have him as Bruce's coach. Hes not only good at giving direction but Wally was good mentally for Bruce. We noticed that Bruce was not wanting to go to the range and he stopped going to the putting green across the street from our house. He told us awhile back that he could not twist as far back as he used to be able to, so his swing would be off. He tried it this past week, thinking he could go out there and chip, so he didn't have to make such a big swing and follow thru. About a half hour later he came back in with his dad and was extremely upset. Its the one thing that he could do as a sport. Dad bought a tandem bike so when Bruce was tired he could just stop and let his dad do the work. Dad is also looking into buying a 2 man Kayak. Bruce loves this. It gets him out in the "wild" and that's one place where he can enjoy himself. Hes pretty good at swimming but its become a need for his body and not for enjoyment. He likes to swim because he feels so good in the water but its become a chore. We go swimming everyday, even in the cold. Our pool is heated. Were just trying to find an outlet for this young man. I just wished that golf wasn't taken away and I hope its not forever. Bruce has been walking everyday and using some light weights. Its been cooler with no humidity. Today he had a hard time...Summers almost here. So now he can walk 2 miles but he cant twist. So different from what was going on in the early days. Can I say that hes doing better....Um,I think so but he still cant run, has fatigue, cant twist and still has enthesitis. He still swells but not much. Is this better?
We haven't had any changes in his medication except for the Amitriptyline that was given to him to reduce the pain in his gut. So far that has not worked. Dr's also said it could help with fibromyalgia if he has it. But it hasnt done a thing. Oh and a probiotic for his gut too but nothing for his arthritis. We see Dr. Colbert at NIH on April 23rd and we will see whats going on. I will update when we get back.
Tuesday, March 19, 2013
Ulcerative Colitis issues
The last time I posted we were holding our breath hoping that Bruce would not flare with his Ulcerative Colitis. His UC likes to show up at the end of February and March. Around the 10th of February, Bruce got what he calls the hospital belly pain. My hubby and I had put a plan together...We would go back to All Children's because they know the drill. All of All Kids GI doctors know of Bruce...lots of talk went through that office due to the order of removing his entire colon last year then miraculously it all just disappeared. I'm sure the heavy doses of remicade and the prednisone helped out a lot. We had tried out a new Peeds GI Dr and we like him...but hubby and I had concerns that Bruce would not be admitted immediately and start IV prednisone. We were afraid that we would go to new hospital ER and be sent home with prednisone to take for a week to see if it would subside which we know it wouldn't...and he would end up in hospital anyway do to his track record over the last 2 years. So when the belly pain started a bit early the GI docs at All Kids did an immediate colonoscopy. I am very happy to say that his colon looked perfect. The dr was concerned that once again he was having anxiety and this was a product of fear that he would go into hospital. I guess they think we don't know our child well enough. I was also a little irked that Bruces GI Doc was very busy...looked at phone twice and looked at beeper several times. He said his stomach ache was due to IBS yet he has no symptoms of IBS. None. Just a pain that's about an 8 at that time and if pushed on in each quadrant of the colon a 10 plus give or take in each section. Also Bruce continues to be full of stool. He can't tell if he has to go or not. I find this concerning. why? Does it have to do with nerves? Is his colon stretched too much...and it was, I was told. Dr doesn't address why Bruce can't tell if he needs to go or not but continue with the Myralax and it will all work itself out!?!? So we left their perplexed. Why does my child have pain in his gut that is making him so uncomfortable that he can't sleep on his belly. The only anxiety he gets is when there is no reason to explain the stomach issue. Which would bother me too, if I was in his shoes. On the long ride home, again I was thinking...everything was done so quickly, is the dr missing something? Bruce was happy he didn't have to go in hospital, but asked why does my stomach still hurt. I could not answer this and told him we would be very diligent to giving him Myralax daily. I made an appt. at that moment to a peeds GI dr at Arnold Palmer who spoke at a Crohns and Colitis seminar. I wanted someone different. I felt I was stagnating on the help that I was receiving for Bruce. so All Kids Dr is a bit too fast and too busy but they know the drill, 2nd Dr we liked but he doesn't know the drill and told me that...this maybe as good as it gets for your son and to stop throwing medicine at this and to see a psychologist to help Bruce get through this? Its what he would do for his child. Ok...mom was a bit hot under the collar. The more I thought about what he said the more pissed I was getting. I had already sent Bruce to a psychologist who handles PTSD ( post traumatic stress disorders). This man is superb in dealing with this kind of problem and guess what? Bruce is fine...like most kids who don't have any baggage except for the illness...he bounces back very quickly. When it's there he worries when it's not he doesn't. And if Bruce needed help with anxiety then the PTSD Dr would be the one to tell me.
I was hesitant to see a new Dr...quite frankly I'm not sure that any dr truly knows. All children who have this illness are so different. And when they can't find an answer they throw it into a hodgepodge because they dont know or think that its anxiety? I never want a dr to tell me this is as good as it gets. You can tell me that when we have exhausted all possibilities. Sorry, I find Drs can be very frustrating and a bit condescending. Every mother I know who has a child with Arthritis and it's related illnesses know so much about each disease that I think it's warranted that a Dr pay attention to moms and dads who do their research.
When I went to Arnold Palmer...I was irritable about the new Dr appt. because I was afraid it would be the same as
the rest. Why should I think that this Dr would be any different...but I had to go through with it for Bruces sake. His belly still had pain and it did not subside after his colonscopy like the dr said it would. I was somewhat hopeful because I heard this man speak and he was very clear about what he believed in. I was so happy that I took Bruce.
First this Dr had all the time in the world, which I loved. He explained that Bruce can flare at the same time each year. This happens more than you think. But when all tests and colonoscopy show that he's in remission with his UC then a lot of times they will look towards IBS. IBS can exacerbate UC. But he didn't think that was what was going on. Because Bruces colon was so inflamed last year he felt that some of the nerves were damaged during his flare to the point that his gut sends mixed messages to his brain. This is why he has pain and can't feel the urge to use the loo. In order to calm the gut down even more he recommended that we give him double doses of Myralax and a laxative twice a week. Also we put him on VSL double strength which is a super duper probiotic. He also put Bruce on amytriptyline. They have found that this medication which is an antidepressant helps to calm the gut down as well as pain in the body. This is understandable, I take welbutrin to calm the bladder down. He didn't think Bruces pain was from anxiety, but that the pain is very real, yes Bruce may have IBS but he thinks it's very unlikely due to lack of symptoms. He also took xrays of his gut and explained that he would probably be on Myralax for quite sometime if not forever due to the damage and lack of urge to go. His colon is not as enlarged as I was told. He thought that Bruce looked a bit swollen in a few areas and said that if his arthritis is not under control, that his gut pain could be attributed to his arthritis.
So far his stomach pain has not subsided, but he is getting better sleep due to the amytriptyline. The increase in dosage of the Myralax is working well.The VSL probiotic is expensive but Im hoping it will help over time. The dr told us that if he flares and there is blood to send him directly to ER and have him paged. I am so thankful for this Dr. I feel that he explained everything to both my husband and me and even to Bruce. Bruce felt better that at least he knew where the pain was coming from. Bruce never complains and I can't believe that he walks around with pains in his gut and stiffnes/pain in his body. It will get him down every so often, especially if he has a difficult day due to his arthritis.
I was going to put all that has gone on in one post but, I think I'll separate each situation.
I was hesitant to see a new Dr...quite frankly I'm not sure that any dr truly knows. All children who have this illness are so different. And when they can't find an answer they throw it into a hodgepodge because they dont know or think that its anxiety? I never want a dr to tell me this is as good as it gets. You can tell me that when we have exhausted all possibilities. Sorry, I find Drs can be very frustrating and a bit condescending. Every mother I know who has a child with Arthritis and it's related illnesses know so much about each disease that I think it's warranted that a Dr pay attention to moms and dads who do their research.
When I went to Arnold Palmer...I was irritable about the new Dr appt. because I was afraid it would be the same as
the rest. Why should I think that this Dr would be any different...but I had to go through with it for Bruces sake. His belly still had pain and it did not subside after his colonscopy like the dr said it would. I was somewhat hopeful because I heard this man speak and he was very clear about what he believed in. I was so happy that I took Bruce.
First this Dr had all the time in the world, which I loved. He explained that Bruce can flare at the same time each year. This happens more than you think. But when all tests and colonoscopy show that he's in remission with his UC then a lot of times they will look towards IBS. IBS can exacerbate UC. But he didn't think that was what was going on. Because Bruces colon was so inflamed last year he felt that some of the nerves were damaged during his flare to the point that his gut sends mixed messages to his brain. This is why he has pain and can't feel the urge to use the loo. In order to calm the gut down even more he recommended that we give him double doses of Myralax and a laxative twice a week. Also we put him on VSL double strength which is a super duper probiotic. He also put Bruce on amytriptyline. They have found that this medication which is an antidepressant helps to calm the gut down as well as pain in the body. This is understandable, I take welbutrin to calm the bladder down. He didn't think Bruces pain was from anxiety, but that the pain is very real, yes Bruce may have IBS but he thinks it's very unlikely due to lack of symptoms. He also took xrays of his gut and explained that he would probably be on Myralax for quite sometime if not forever due to the damage and lack of urge to go. His colon is not as enlarged as I was told. He thought that Bruce looked a bit swollen in a few areas and said that if his arthritis is not under control, that his gut pain could be attributed to his arthritis.
So far his stomach pain has not subsided, but he is getting better sleep due to the amytriptyline. The increase in dosage of the Myralax is working well.The VSL probiotic is expensive but Im hoping it will help over time. The dr told us that if he flares and there is blood to send him directly to ER and have him paged. I am so thankful for this Dr. I feel that he explained everything to both my husband and me and even to Bruce. Bruce felt better that at least he knew where the pain was coming from. Bruce never complains and I can't believe that he walks around with pains in his gut and stiffnes/pain in his body. It will get him down every so often, especially if he has a difficult day due to his arthritis.
I was going to put all that has gone on in one post but, I think I'll separate each situation.
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