New, nervous and not quite understanding (why this had to happen to us)

[Supermom]

I am new to this site and this is my first time posting. I do read and follow many questions/answers and there has been some valuable information I have taken in.

My son (soon to be 12) had a colonoscopy 12/29/11 and was diagnosed with Crohn's that same day. He didn't really have alot of symptoms in the past that we could tell at the time, but now looking back there were a few with a little losing weight and complaining of stomach hurting. One day (a month before the scope) there was some blood in his stool. We had a consultation to monitor and it ended up happening again so thats when we seen the specialist. After being in shock for awhile and trying to comprehend the diagnosis, we went back the next week for a treatment plan. He was put on predinose for eight weeks and also started Azathioprine. He felt much better (and gained 25 pounds but has lost some of it from being active in sports) and the bleeding stopped. A few weeks later he had some bleeding again so we tried suppositories and they seemed to temporarily help. About a week or so after that he started having the bloody stools again so the doctor was going to schedule another colonoscopy. Then the day before he was to have it done, he had no blood. He continued not to have blood for a couple of months, until recently. We are assuming he experienced his first flare, stomach hurting all the time, on the toilet all the time, and pretty fatigued. Had our two month check up and he is now put back on predinose for another 8 weeks. Just a couple days ago, I seen blood in his stool.

So, what to do next? I called the doctor today and she wants to do another colonoscopy this week to check out a few other things before having to start Remicade, which would be his next step. I hear great things of this "miracle drug", yet I'm so nervous and scared for him. Is having two colonoscopies in five months too much for a young kid?

 

[Momto2girls]

I am so sorry to hear that your son is going to need another scope -- no fun at all! I sure hope they are able to help him -- I know they gals here know a lot more than I do, and they will be able to help you for sure. Everyone here has been so helpful and supportive!

 

[Clash]

I can completely understand your anxieties and fears, my son was also just recently diagnosed and it is such a hard thing to wrap your mind around all of the implications of the illness and at the same time make decisions on treatment. I am so sorry your son is having a hard time right now. This is a great site and I am sure that someone will be along shortly with some sound advice to your inquiries. My son was also on prednisone and it didn't help with his flare, we have been tapering down for awhile now and hopefully will be finished by next Thursday. He hates the way the prednisone makes him feel and the side effects from it so he is so excited to be finished with it especially since starting the Remicade and the results he has had with it. We just keep our fingers crossed that Remicade continues to work for him. I hope you are able to find a treatment that helps your son to feel better. Sending good thoughts your way!! By the way, you may want to look into Enteral Nutrition, it has really helped alot of kids on the forum, maybe one of the moms will be by shortly to fill you in on their EN experience.

 

[kimmidwife]

Hi Supermom,
Welcome to the forum. (Sorry you have to be here). I agree with clash take a look at Enteral Nutrition and also look at the LDN forums. A lot of kids here have been helped by those 2 things. I am so sorry your son is having a rough time right now. There are certainly a lot of ups and downs with this disease.

 

[crohnsinct]

Supermom (Love that name by the way): Your journey sounds similar to ours. Few symptoms until 2 weeks prior to diagnosis. She had blood in her stool and wasn't gaining weight. Upon dx she was put on Prednisone and Remicade. Once tapered off Prednisone bleeding returned. My daughter gained 11 pounds but stopped once off Prednisone and recently lost a few popunds. Our doc mentioned the suppositories but I am not sure why we never actually used them...I think because then she had blood tests and they indicated inflammation and that meant the blood was not the "terminal" bleeding that is treated with the suppositories. We continue to have blood even 4 months after diagnosis. My daughter is currently on Enteral Nutrition to support the Remicade.

I am sure Dr. Dusty will be along shortly but did the doc mention why she needed a second scope? What types of things are they looking for? It would seem to me that blood tests and stool tests would probably give them the information they need to access the situation and proceed with a different treatment but I am not a doctor I just play one on the internet I wouldn't imagine it would be harmful to do two in 5 months and if I am being honest I would rather like another for my daughter as reassurance of what is going on inside but I think that is just paranoid mommy speaking. Our doc seems pretty confident at the moment going on blood and stool tests.

I will help Dr. Dusty out and ask, where is his disease located? Did they do biopsies with the first scope?

 

[Farmwife]

Hi Supermom. I also :heart: the name.
Sorry to here your DD story.
My little Grace is 3 and undiagnosed. She has many, many symptoms
of crohn's and getting more daily.
I wish I could answer you question of why but I can't.
However, I don't take her "good days" for granted anymore. Their such a blessing to us and we cherish them beyond belief.
I hope once my Grace is diagnosed our "good days" will increase and are bad day will be few and far between.
So maybe that's why it's happing.
I'm being taught to appecate the "good days".:dance:
More parents will be on their way to help.:kiss:
Ask question!!!!!!! Ask Questions!!!!!!!!!!! Ask Questions!!!!!!!!!!!
That's the best way to make this journey a little less scary.

Farmwife

 

[my little penguin]

WE just had our second scope on Friday. Last scope was in Sept. so about 5 months.
Scopes have risks but a lot of kiddos need them more frequently for other GI disorders including EoE.
In the case of crohn's the benefits usually outweighs the risk.
Ds had worsening of symptoms while on 6-MP so our GI wanted to check DS prior to starting Remicade.
I am glad we did since his disease is worse and we would not have really known since his blood work was normal.


I hope you can find answers for your little one.
I second the En. Ds is on 750 Calories of Peptamen Jr. with Prebio. a day as maintenance therapy.
We did 9 weeks of oral EN ( no other food).
He has gained over 11 lbs to date.

Good luck.

 

[Mom2oneboy]

Welcome Supermom! I just hate seeing that another little person is going through this!! My son was diagnosed in February and he turns 11 tomorrow. He had is first scope in February and then another one in April. Not sure if that's "normal" but I wasn't told of any additional risks with him having them so close together. The main reason for doing this was because of bleeding, as well. We started with the nightly Rowasa enemas and continued with EN at night (after a month of exclusive EN) and the bleeding for the most part has stopped. If it had not, our doctor was recommending Remi also. For now that is on hold but will probably be our next step if the methotrexate (that he starts this week) and the EN don't keep things in check.

I certainly understand all the nervous and scared feelings! It sucks big time that we have to make these types of decisions for the people we love the most. Hang in there and know that you are not alone!!

 

[Mom2oneboy]

I would also encourage you to check out the Kids on EN thread. Lots of good information there to help you make a decision on whether that might be an option for your guy.

 

[crohnsinct]

Mom2one: I am very intrigued by this second colonoscopy thing now. Was the bleeding a new thing for your son and is that why they went back in to look?

 

[Mom2oneboy]

Mom2one: I am very intrigued by this second colonoscopy thing now. Was the bleeding a new thing for your son and is that why they went back in to look?

Yes, he was bleeding a lot! It started on 3/18 and continued to get worse and worse. Prior to that he never had any blood in his stool. It was coming from the colon area.

 

[Supermom]

Thank you all so much for your responses, comments, suggestions, etc. I refer to myself as Supermom as that is what I feel like most days. I am a single mom (with another child as well) and so going through this alone is very tough. I am so thankful for my close friends and family, and now this site and all of you! I am still learning all the terms that are being used so bare with me. It's so comforting to know that so many of us have such similar situations and that I can finally relate. I live in a town of about 50K and I swear my child is the only one here that has Crohn's. And no doctor here even sees pediatrics so we have to travel.

When he had his first scope done, I was so in shock when she told me the diagnosis that I hardly remember anything she said. Thank God my mom was with me. They did an endoscopy as well and I think once she saw it from the top and the bottom, she didn't go further, she knew right away that he had Crohn's and showed me the small ulcers on his pictures. He does get bloodwork done every couple months and he has also given a few stool samples as well and they all come back normal each time. This last blood test did show some inflammation and that is why we went back on prednisone. Im not a hundred percent on what she is looking for but I was too emotional on the phone today to take it all in.

My kids keep me very busy almost each evening with baseball/softball and I work a full time job as well, so I dont get a lot of time to get online. Please know that I will read every response I get and if I dont respond right away, I will as soon as time allows. Once again, thanks to all of you!

 

[jmckinley]

So sorry that your son is having so much trouble and I am sorry you are having to deal with this. I think it's a common feeling to wonder why this is happening (I've been there & visit there often), but I have to remind myself it takes my energy and I need to use that to fight for my son instead. You are doing the right thing getting on here and learning all that you can about the disease and treatments.

I would call the Dr to see why they want to do the 2nd colonoscopy. Get some reassurance that putting him through that is necessary. I remember our Dr saying he always did a colonoscropy right before starting remi. Definitely read up on the EN information on here. I am learning from these ladies that it can work wonders. You may have to ask your Dr to try it. My son just got a prescription for Bentyl for stomache pains. It helped alot until we could get a new treatment plan going. Put on your boxing gloves and go get 'em, Supermom!

 

[Supermom]

I had briefly read about EN and there is no way on this God's green earth that my son will take any liquid diet (he was going to have an MRI right after his diagnosis and he could not drink the barium). He is such a picky, picky eater as it is. I have talked numersouly to our doctor about any special diet and she said to let him eat what he wants and if something bothers him, not to eat it again. But he does stay away from roughage and seedy stuff as much as possible. I am trying to have him do a food journal now that school is out and I am not home to monitor what he is eating, the prednisone makes him want to eat alot. He pretty much will eat the same thing over and over. So far we have not pinpointed anytihng that has really taken a toll on him.

You would never know he has Crohn's looking at him. He just finished up playing his 8th soccer season last month, and he plays basball 3-4 times a week so I really try to keep him busy. He does have his days where he likes to stay in his pjs and be a bum. He did very well in school, only missing a few days the whole year and the teachers were very understanding and I always made appts at the end of the day or after school so he did not have to miss. He even made the Principal's honor roll with all A's and one B.

Thank you all again for your support!

 

[izzi'smom]

Just wanted to pop in and say hello!

I was fairly adamant about testing.

I always asked how it would change the course of treatment. Often further scopes will not, so Izz only has had 2 in 18 months. She may have a third soon as she is facing surgery soon. She also had an MRI enterogram, but only after she developed nausea and vomiting; I wanted to know if a stricture in the small intestine was causing it. While our kiddos must endure a lot, I think it is up to us as parents to advocate for our kiddos; if the potential risk of the exam is worth the potential findings. Sorry that you are dealing with all of this, but best of luck.

 

[DustyKat]

Hi Supermom and :welcome:

I'm so sorry to hear about your boy...:hug:

EN is certainly a great treatment but for it to have a chance of working you need to be compliant, just as you do with any other treatment. Obviously the choice will lie with your son and you need to go down the path that he wants.

Are you able to obtain a copy of the scope report? I assume the doc took biopsies?

I don't see that having another scope would be harmful as such but I too would want to know why they wish to do an invasive procedure. Is she doing it as a baseline test before moving onto further treatment and is "checking things out" in the all clear sense or is she indeed checking things out because she suspects something.

Inflammation is the enemy when it comes to Crohn's because that is what does the damage so keeping that at bay is your major aim. Unfortunately like so many things with this disease one size does not fit all. For some inflammation is worn on their sleeve for all to see, it is a no brainer but for others there is no outward sign at all but all the while it is festering its merry self away. :voodoo: Remicade is scary as are almost all the drugs but so is untreated or under treated inflammation so it is all a case of putting things into perspective and Brian'sMom posted a wonderful article a little while back that should hopefully make the choices a little less scary...

http://www.ccfa.org/webcasts/Risk%20and%20BenefitsTranscript.pdf

Kudos to your boy for doing so well at his academic and sports! Well done! :medal1:

Good luck and let us know how you get on!

Dusty. xxx

 

[Suzysu]

Hi! I'm so sorry your little boy is not doing well and also that you have to go through this alone - everyone on this forum is wonderful so you will get lots of support here! I can't give any advice as we are not yet diagnosed - just wanted to say I am thinking of you guys - I hope he starts to improve soon xx

 

[jmckinley]

Supermom,

Sounds like our sons are alot alike. Mine also doesn't look like there's anything wrong. His only outward sign is being very thin. But my husband and I are small(ish) so no surprise he is small. He only occasionally has loose stools and blood, more often constipation. He was also a picky eater up until now. He is beginning to realize he has to take control of Crohn's himself. He was diagnosed in 2009.

In our case, the enemy is definitely the inflammation...inflamed gut does not absorb nutrients therefore he doesnt gain weight. I did alot of reading on inflammatory foods and we started an anti-inflammatory type diet (GAPS or SCD diet). I don't know that the diet is the cure, we just hope to help the meds get the inflammation under control. Our drs also said eat what he wants...the only dr to ask about diet has been the ENT (because he is on SCD) and the holistic dr we started seeing. You are smart to keep the food diary!

It sounds like they want to make sure inflammation is your only problem and there are no blockages or anything. We went through that before starting Remi. I hope you get some answers soon. The waiting and wondering is hard! Hugs to you.

 

[Sascot]

Just wanted to say hi and welcome. Sorry to hear about your son, mine was 12 when diagnosed too. I can understand what you're going through thinking about the medications - I am not happy with my son being on Azathioprine but needs must, as his disease is peri-anal at the moment, the less "dangerous" drugs wont do.
As for having another colonoscopy I would assume they really need to do it otherwise they wouldn't suggest it. Over here anyway the docs are also reluctant to do things that need a general aneasthetic, so if they suggest it, it usually means it's important. My poor boy has had 4 anaesthetics in the last 8 months and has been fine so far. Hope everything gets sorted soon for your son!

 

[Jenn]

Welcome and sorry to hear about your son. Sounds similar to my son, small bowel inflammation. There is so much to learn and it's overwhelming and heartbreaking. Never hesitate to ask your doc all your questions so you can understand all they want to do and why. Remicade worked well for my son while it lasted. Best of luck to you!

 

[Twiggy930]

:welcome: Supermom!

So sorry to hear your son has been unwell. I just wanted to add that with EN you do not necessarily have to drink the shakes. My son is also SUPER picky and there is no way he would be able to consume all the required formula orally. He did EN via NG tube feeds overnight. It worked quite well for him. Let me know if you want more info.

:hang:

 

[LilyRose]

Hello,

I just wanted to to welcome you and say I'm so sorry your son is feeling unwell.

It is pretty overwhelming to be told your child has a long term condition. I think it is good to allow yourself to feel upset.

I hope things soon settle for your son. I'm sure the doctors should be happy to answer your questions - it is really important for us to understand what is happening, why they suggest something etc.

I write my questions down before an appointment, and I actualy check the paper before I leave at the end of the appointment to make sure I've covered all my questions. And I take my husband or a friend with me. I know I tend to fall apart easily!!

I just wanted you to know that you are not alone.

Take care,
Lily Rose