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!!!

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.