ADVISED TO PREPARE FOR "PLAN B" (SURGERY) ... IT'S TOO SOON!!

We had a followup visit with our regular GI yesterday.   After going over my son's current state of being, medications, and symptoms,  he has advised me to contact the surgeon at Miami Children's Hospital for a consultation.   He said that we have to prepare for "Plan B" and feels that my son could require surgery before the end of the year.   I am devastated.  I can't stop crying but have to put on a brave face for my son.

 

I have read so many posts on this forum about people living with this disease for years.   I cannot believe that after only being diagnosed in February, I am being told to prepare for a surgery that will change my son's life forever.   I know that my son is feeling the same sense of devastation, he just won't show it.   I think he is keeping it all inside.   He even said that he is ready for surgery, but really has no idea what to expect.

 

This disease is so unfair and for a 14 year old to have to deal with this is insane.   I am not ready for this.   Whoever said that "God only gives you what you can handle" was full of crap. 

 

How do I find the best doctor?  do I have more than one surgery consult?  we have already gotten two second opinions for other GI's and they all concur with the current course of treatment.  

 

We are scheduled for his 3rd Remicade infusion and I am PRAYING that it will start to work.   Weaning off the Pred is the hardest, because he starts to bleed again but all three doctors said that he HAS to get off of the Prednisone before it does long term damage. 

 

So sorry for this long post, but I just had to vent some of my frustration and anger at this horrible disease that has changed my son's life forever.

 

 

Thanks for the info Summerstorm. I will look into it.

MotherofTeenwithUC,

I am so sorry to hear about Plan B. My heart goes out to you and your son. I was so much hoping for a better outcome for him. Big hugs.

I would suggest you try and contact your local CCFA support group and ask them about local referrals for great surgeons who  specialize in this type of surgery - and they would certainly know who's good and who's the best.

And I would have a few consults with several different surgeons too.

If I remember correctly, I was told Dr. Maria Abrew is a great GI who only does consults (she is not a surgeon, but is well known as a GI)- she is out of University of Miami, and it is VERY difficult to get an appt. with her. But call her number and speak to her nurse and explain your situation - and she'll make sure to squeeze you in sooner than later. I've heard that she identified mesalamine intolerances where other GIs were not able to do so and suggested other meds.

You and your son are in my prayers.

@Tanna, Thank you for your response.  It is good to hear positive stories.  I went on the Ostomies forum and just cried when I read all the posts about "things that go wrong, leaking, bags not fitting right, etc.etc .  I am having a hard time wrapping my arms around this whole thing and wondering how he will ever handle all this.  We llive in S Florida, and my son surfs, wakedboards and we are the beach almost every weekend (except lately).  He is like a fish in the water.   How is this going to affect his ability to do the things he loves? 

There is a Cleveland Clinic about an hour from where I live.  My neigbhor who is suffering Colon Cancer went there for his ileostomy srugery and takedown surgery and even brought me some information that he recd in the hospital.  I think that I am going to give them a call.   My Dr has referred us to a Pediatric Surgeon at Miami Childrens hospital but she is a general surgeon not one that specializes in Gastro.

Would love to hear more success stories.

Thanks,

MotherofTeenwithUC,

How are you doing? How is your son?

Were you able to check out Dr. Maria Abrew @ University of Miami?

Thanks to all who have responded...  I am curious why my son's Dr would refer me to a pediatric general surgeon and not some who specializes in colon surgery.  I will have to ask

I have not tried the SCD diet.   we tried to be Gluten free, but what a pain in the ass (no pun intended).   Not only is it impossible to find anything that doesn't have wheat flour in it, when you do it is 3X the price.    It is exhausting trying to plan  meals for a growing 14 yr old with severe UC that spends his days watching "Man vs. Food", the Food Channel " and Bizarre Foods" on cable TV.    He is so pissed all the time because he loves to eat, loves to try new foods, loves to cook and feels that he has been cheated....and he has.   It is enough to get him not to eat the things he shouldn't, but it is exhausting to get him to eat the things he should.   But he has been a trooper.  

He gets on a plane tomorrow to fly up to see his dad for a week....I am keeping my fingers crossed that he will be ok.  You know us moms, we never stop worrying.

 

I am so sorry you are going through this. I can't imagine watching a child suffer with this disease.

I remember reading about leaks, blockages and all the scary ostomy stuff before my surgery. I was just commenting on this today with my hubby when we were out on a 4-day camping trip where I fished, hiked and even did a 3-hour zip-line adventure. I mentioned to him how interesting it was that, after reading so many horror stories, I had expected to have all these leaks and food issues after my ileostomy surgery. I am now 8-months post-op and have had zero leaks (except for one minor one right after surgery due to wound drainage getting under the appliance adhesive) and have been able to eat anything I have tried. Since surgery, I have also hiked up mountains, backpacked for multiple days, swam, snowboarded, run and have not had my appliance leak or come unstuck even once.

There are many, many positive stories about surgery out there. You just don't hear them as much because people tend to write more about problems.

Your GI is wise for you to seek a consultation. Thirty percent of those with UC will end up with surgery. I was one and in hindsight it was the best course for me. I just returned from a 138 mile hike thru Wales. I could not have done this with UC. There are lots of children who have had the surgery and they do very well. Hopefully Collicat will see your post, her son had surgery last year and he has blossomed! Go to www.j-pouch.org and look for Connie. Her son had surgery at age 9. He is now 21 and doing well. My heart goes out to you, this process will be far harder for you than for your son.

Sue

@Collicat...and everyone else, Thank you for your responses and support.    We have an appt with a pediatric general surgeon in 3 weeks.  I am still confused why my GI would send us to a general surgeon vs. a CR surgeon.  I am all about asking questions and have called the GI today to inquire.   We have Cleveland Clinic and Miami Children's Hospital both within an hours drive.   I am going to research both.

My son is 1500 miles away this week visiting his dad, away for the first time since his diagnosis.  It is difficult and I want to call every hour just to check on him...but I don't.  and he seems to be doing ok. 

Scheduled for next Remicade infusion on July 28. 

Will keep you posted. 

Thanks!!!

I'm very sorry to hear of your son's troubles and your worries. It's an awful situation to be in, and I can't even imagine what it's like as a parent seeing your child go through this. everyone has already given you great advice though! I just finished my surgeries after putting it off for 3 years. (I too was told I needed surgery just 10 months after being diagnosed but then waited and waited and then my colon finally perforated) the ostomy board is my new home even though I have a J-pouch and yes, the things people say seem awful, but they are the minority. the healthy people are out living not posting. And the first few months are when you have the most questions.

First, like others said, do not, no matter what your GI dr says, do not have the surgery done by a general surgeon. Just don't do it. GI dr's are not surgeons they don't know the surgeries so they just send you to someone, its not necessarily the person you should be seeing. You say you live close to Cleveland clinic. GO THERE! They have surgeons who specialize in colorectal surgery for juveniles. You can go to the website and read up on the drs to find out which will operate on young teens or just call them. They get people in for consults fairly quickly too. They are 2nd best in the whole US for colorectal surgeries. They will also be able to tell you if your son could get a J-pouch or at least leave him the option for later in life. You said miami children's, maybe they have a colorectal surgeon there, and you could see them instead of the general surgeon. The general surgeon may be good, but I'd rather have a specialist. I had my surgery in Cincinnati, with Dr. Janice Rafferty and she was absolutely wonderful. But if i had lived closer to cleveland, it would have been the clinic for me! Lots of people on the ostomy board had there surgeries at CC when they didn't even live anywhere near, like Minnesota and such. Plus I have 2 friend's who's parents had surgery there. Definitely look into it! And you can talk to as many surgeons as you want to find the one that you and your son are comfortable with. Don't settle when it comes to a surgeon. You need to like them and feel confident in their abilities.

Second, try not to look around on forums pre-surgery too much. they will freak you out with things that more than likely will never happen. Just save them for asking "What to expect" questions and anything that comes up after surgery. Everyone over at the ostomy board is really helpful; without them to help guide me through my colostomy, i don't even want to think about it! And again they were wonderful when i had my Ileo. Now I have a J-pouch and just try to give advice from time to time.

Third, Getting off the pred is necessary not only for his long term health, but you can't be on it going into surgery. (Or at least they really really want you off of it.) It slows the healing process. But having said that, younger people recover so much faster.

if he gets a J-pouch or needs multiple steps, you can spread them out so you don't have to worry about school on top of everything else. Surgery seems awful. And recovery kinda is, but think of the end result. He'll be cured! No more sickies! I was devastated when i was taken in for emergency surgery, but I can't even begin to think of how my parents' felt. At least this way you have time to mental prepare (as much as that's actually possible) And its much safer than having surgery forced on you from a perforated colon like I had. You may want to head over to uoaa.org and look for a local support group. It would be really helpful I think to talk to people in the flesh about their experiences and show you just how easy it is to live with an ostomy or J-pouch. I talked to several people in my surgeon's office just in the waiting room and they told me how nice it was to hear about my experience and the advice I had for them before the actual procedure. My heart goes out to you and your son. I'll keep you and him in my prayers and hope that eventually you can handle everything. Good luck to the both of you!