Is this it? Consult with a surgeon for a 10 year old?

My daughter was diagnosed with UC 2 1/2 years ago. The first flare was though on the entire family. It took about 6 months to get her stable and we enjoyed one and half years of "normal" life, even though she got C-Diff a year ago and scared us all once again. This February she started to flare again, was hoping and preying that it was C-Diff, but the test came back negative. This flare seemed milder, a lot less blood than the first flare. She was put on Pred 40ml and all this time Remicade every 6 weeks. Remicade did not seem to do anything, but the Pred did it's thing. This past Thursday she has her Remicade and we are tapering down to 5ml Pred every other day. ( I already saw that she was relapsing) but was hoping that Remicade would kick in. As we are done with the infusion, the nurse is taking her final vital signs and her temp is UP, fever grade. I should mention that my daughter complained in the car on the way to the hospital that she was cold with A/C on, I should have known that something was up, she is never cold but she looked and acted normally. So, this high temp threw everyone into panic, they called pediatrician to check her out, nothing. They took more blood for more tests and cultures, gave her Tylenol and sent us home. Throughout the weekend she had this fever with the exception for Monday when we though that we were done with it. Fever came back this morning and I put my daughter into the car and off we went to see her GI. This is were it gets all cloudy for me and I am still dizzy from the experience. All the blood tests they took on Thursdays are "good" or as good a could be expected from someone with an active flare. They have no reason for the fever. GI ordered more blood, c-diff test and wants to schedule a colonoscopy. The last thing.....that is what really killing me is that she gave me a surgeon's name for a consultation.
I know that the surgery is a "cure" and may bring life back to my family, but she is only 10 and I do not want to be in position to make that decision for her, it is her life after all, if only she was older.
I know it is only a consultation and GI said it her self that there other things to try. But it all seems so final, the doc has no faith?
Sorry for such a long posting, I really do not have anyone to discuss this with, I can't even tell my wife about the surgeon, she already does not sleep or eat, this news will definitely put her into a hospital.

C diff tests aren't always accurate, so I personally wouldn't have one and assume it was correct. There are other meds besides remicade. I wonder why none are being offered? Did she tried 6mp or imuran? Has she had an upper scope? Definitely want to be 100% sure it's UC and not crohn's before even considering surgery. I don't think the consult is a bad idea, but I do think it's smart to get all the options on the table before coming to any conclusions. Are you going to an IBD center? Usually the doctors there really focus on treating IBD and they may be able to think of other options that a normal GI wouldn't. I wouldn't rush into anything if I were you. It sounds like you're not. I can't imagine making that decision for someone else either. I had to make it for myself, and I am very thankful to have my life back. That's one thing I can tell you. I also know if someone made the decision for me, it would have probably been harder to accept. There is a point where i just couldn't do it anymore. I woke up every day feeling awful and spent as much time in the bathroom as I spent out of the bathroom. One thing about having surgery younger, is that younger people's bodies adapt better and they usually end up with less trips to the bathroom overall compared to older people. Just trying to put a little positive twist out there. I Mean, there is no good solution. Drugs are bad, a life of dependence on drugs and medical practitioners is bad. Surgery is also bad -but for me it's better than the alternative.

There are some other biologics. But early age onset and failing a biologic make surgery at some point much more likely. But, if you can get things managed well enough, there are some new options every year or two.

IF the pred taper is 5mg every other day, I think that is too fast and could cause problems in itself.

Given the history of c-diff, and the high false negative rate on c-diff tests, I personally would not consider surgery until I had tried FMT. Through the nose, up the butt, or with a research center that can access the pills, FMT has a very high cure-rate for c-diff.

The consult with the surgeon is best done well in advance of need. You may want to shop around for surgeons, or better understand the recovery ... etc.

good luck

notsosicklygirl said...
C diff tests aren't always accurate, so I personally wouldn't have one and assume it was correct. There are other meds besides remicade. I wonder why none are being offered? Did she tried 6mp or imuran? Has she had an upper scope? Definitely want to be 100% sure it's UC and not crohn's before even considering surgery. I don't think the consult is a bad idea, but I do think it's smart to get all the options on the table before coming to any conclusions. Are you going to an IBD center? Usually the doctors there really focus on treating IBD and they may be able to think of other options that a normal GI wouldn't. I wouldn't rush into anything if I were you. It sounds like you're not. I can't imagine making that decision for someone else either. I had to make it for myself, and I am very thankful to have my life back. That's one thing I can tell you. I also know if someone made the decision for me, it would have probably been harder to accept. There is a point where i just couldn't do it anymore. I woke up every day feeling awful and spent as much time in the bathroom as I spent out of the bathroom. One thing about having surgery younger, is that younger people's bodies adapt better and they usually end up with less trips to the bathroom overall compared to older people. Just trying to put a little positive twist out there. I Mean, there is no good solution. Drugs are bad, a life of dependence on drugs and medical practitioners is bad. Surgery is also bad -but for me it's better than the alternative.

notsosicklygirl,
I've been following your story, really glad that the surgery worked out for you. I Just wish my daughter would be a bit older to really understand this disease.

she had both scopes 2 years ago for diagnosis. Had some time to think about the doc's suggestion last night, and it is only a suggestion, will definitely be asking about other medications.
Thank you

DBwithUC said...
There are some other biologics. But early age onset and failing a biologic make surgery at some point much more likely. But, if you can get things managed well enough, there are some new options every year or two.

IF the pred taper is 5mg every other day, I think that is too fast and could cause problems in itself.

Given the history of c-diff, and the high false negative rate on c-diff tests, I personally would not consider surgery until I had tried FMT. Through the nose, up the butt, or with a research center that can access the pills, FMT has a very high cure-rate for c-diff.

The consult with the surgeon is best done well in advance of need. You may want to shop around for surgeons, or better understand the recovery ... etc.

good luck

Thank you.

I understand that this disease may get worst over the years. I'm hoping that we can get a few more years for her to get older so she can understand this disease better and help us to help herself.

First let me say that I am so sorry that you and your family are going through this. I too was in the situation that you are in with your child. My daughter was diagnosed with UC at 18months old. They wanted to take her entire colon out. She is now 16 and doing well. You can read her story under Hailey's Letter.

Please don't lose hope. I don't understand why the GI would want to schedule an appointment with an surgeons before the colonoscopy results?

I have learn a lot about this illness, and I encourage you to find an immunologist for your daughter. 70% of the immune system is in the colon. We took our daughter to one in Cleveland Clinic and he was the best thing that could of ever happened to her.

He basically explained to us that they treat UC by controlling the symptoms with medication , or they stop immune system with Imuran. Only until we went to him , did he explain to us, that our daughter could of gotten a bacteria/parasite that invaded her colon. He explained that yes they check for some strains of bacteria, but it is completely impossible to check for all bacteria/ parasites that could cause illness in the body.

I'm curious how the metronidazole worked compared to the remicade?

Please keep in mind that if she is not responding to regular UC medications, it may not be UC. It maybe a bacteria/parasite or some kind of imbalance going on in her colon.

Since she has had C-diff I would be looking for a GI that would do a Fecal Transplant on her . This will replace any "bad" bacteria or overgrowth that is in her colon.

I agree with notsosicklygirl too. You have to make sure it is 100% UC and not Crohn's disease. You need to get multiple opinions.

Will this be the first colonoscopy she has?

Email me at anytime. I understand what you are going through.



Here is our story that we went through with our daughter, many nights I cried myself to sleep . It under Haileys Letter

https://www.healingwell.com/community/default.aspx?f=38&m=1414741

I completely understand why you would feel blindsided by the mention of surgery. I agree that while it is never a bad idea to have a consult, I don't believe it is a good idea for someone this young to have a consult, it is sending out the wrong message for her in my opinion, there are many many other options open for her before this one. Wishing the best for her.