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.