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Crohn's Disease Forum » Your Story » So the journey begins


06-29-2015, 04:34 AM   #1
MayaMeager
 
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So the journey begins

A very big hello to everyone here! Very much a newbie, the only forum Iíve ever joined actually!
Iím a Dad, and only very recently my 15yr old boy has been diagnosed with Ulcerative Colitis, and as well, we have learned that he also has Crohn's disease, to say the least my heart is breaking wide open.

As of a few months ago, Crohn's was purely a word I recognized, I had no idea what it was tho, and Ulcerative colitis Iíd never heard of, let alone remember how to pronounce it!! And right now I just want to reach out to others in the same position. So here is our story so far.
My boy is the light of our lives, he is an only child, as Father and Son we are extremely close, Iíve done my stints as home Dad throughout times in his life, and we have established a strong unbreakable relationship, he is a very magnetic individual! People want to be around him, he is strong and very grounded, fantastic at sports and doing extremely well at school, I couldnít be a more proud Father.

He has always been fairly pale, but so is his Mother, we never thought much of it, as we knew he was eating well and doing well generally, until our family doctor expressed concern, so we sent him off for some blood tests. To our surprise pathology called that very night, extremely concerned about his condition, what condition!!! He was fine!
His red blood cell levels were so low, that as far as they were concerned he shouldnít even be walking! His level was 66, should be around 140. Aside from being pale my boy showed no signs of being sick, he didnít have a sore belly, or any symptoms of anything at all, and he felt fine himself. So we contacted our doctor, who advised admission to Maroondah Hospital the following morning for a blood transfusion. Our doctor actually came to our house the next morning, and arranged admittance to the hospital. I have to say we had feelings that we had been negligent parents, which seemed so ridiculous, as we are both so in touch with our son.
After a full day the staff at Maroondah hospital had no idea what could be wrong with him, they didnít give him a transfusion, instead they sent us off to a major hospital, The Monash. I canít even begin to express the feelings my wife and I were going thru, we were strong for our boy, but inside, and alone together we were a mess, so bloody scared, all the crazy thoughts going thru our heads, and no one had an answer.

A team of Specialists were put together at the Monash hospital. And to cut an extremely long story short, the next few months were spent in and out of the hospital, my poor boy has been poked prodded and pricked, until a colonoscopy revealed Ulcerative Colitis, and when the biopsy from his gastroscopy came back, it revealed Crohnís disease.
I had no idea how confusing and sinister this disease could be, and as I understand things now it can be very different for every individual, since learning this I have sought out as many people coping with the disease as I can, seeking as much information as I can, there seems to be so many different trains of thought about management, itís hard to know which direction to take.
So far my boy has been put on a high dose of prednisoline, 50mg, and reduced by 5mg per week, as well as pentasa, and Nexium, the drugs has worked well! Aside from him eating us out of house and home!!! Lol.

He had his blood transfusion, as well as an iron transfusion, and as things stand right now, his blood levels are back to normal, markers for inflammation show that the inflammation in his colon has gone down, all very positive! As I understand things, this doesnít really mean much tho, he may not remain this way without the prednisoline, and this disease will keep raising its ugly head, which I know it will.
Currently as he comes off the prednisoline, he is being put on Azathioprine, an immune suppressant drug, this is his first week on it, and to be honest, it scares the absolute hell out of me, Iíve read the side effects this drug can have, and apparently he will be on the drug for the next few years.
So thatís where we stand right now, and all I can do is pray to a god I donít believe in that he will be ok!

I really just wanted to vent a little! And I truly hope others can and will relate to our situation, so we can all know were not alone, and hopefully learn from each other, not only about management, but our personal emotions on this journey. My boy is such an awesome kid, and god damn this bloody life for putting this on him, In my private moments I canít stop crying for him, and I know all you parents feel the same about your children, all we can do is hope it makes a stronger person out of them.
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06-29-2015, 05:15 AM   #2
n00b
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Hi there.
It is very clear how much you and your wife love your son, he is very lucky to have such awesome parents as you guys seem to be.

I have two young boys, 5 and 2 and they are my absolute everything. I have had crohns for 5 years and I have always been terrified what I would do if either of my boy got the disease.
It does seem you are getting some good treatment and he sounds like he is doing really well.

All you can do is concentrate on the "now" and not think about the "what ifs".

Be there for him as it seems like you always are and understand he might get pi$$ed some times but that is only natural.
Good luck
06-29-2015, 05:17 AM   #3
scottsma
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Hi and welcome,but sorry you have to be here at all.We have a teens and young adults section that your son might find helpful.It's always overwhelming at first,like most traumas in life,but hopefully once he gets into remission,he will have a carefree life,as he deserves.You will both get lots of support and advice,but remember,we're all different,and what works for one person might not work for another.Best wishes.
06-29-2015, 06:09 AM   #4
MayaMeager
 
Join Date: May 2015
Location: Melbourne, Victoria, Australia

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Noob.
Thank you, very true, its hard not to go thru the "what ifs"! This disease seems so bloody unpredictable, and so many people seem to have such different experiances, but your right, got to concentrate on the positive, and Kyle, my son, is really taking this on board, he is taking it like a man, not a child, and Im so proud of him for that, I think attitude towards our problems in life is always half the battle won.

scottsma.
Thank you, and yeah, wish I wasnt here either! But we are, Its very overwhelming, probably more for us than our son! As said to noob, Kyle is really taking things on board like a true man, he is doing so much of his own reseach, however I would like to guide him to positive research, people with real life experiance, like what you have available here. But I guess thats got to be up to him!
06-30-2015, 05:05 AM   #5
POTTYTIME!
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Mayameager:

Sorry to hear about your son. Glad he is doing better. We all struggle at first with this disease for many different reasons. The main goal is to stay strong. Im glad you want him to do research for himself because of the old saying, knowledge is power. I do want to add a thought though. When dealing with real life experiences with this disease, the reality is, not all of them are positive. Case in point, if I gave you my crohn's story, you would be nothing short of depressed.
Just want to prepare you that when you research, you will find there is potential for multiple surgeries, drug side effects, other body problems, etc. I do pray he keeps getting better and things keep going your way.
07-01-2015, 04:35 AM   #6
MayaMeager
 
Join Date: May 2015
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Thanks pottytime, I guess thats the big unknown, the big fear, whats in store for my son, we just dont know, and thats the real nasty part for all out there suffering from this damn disease, no one seems to be the same, and nothing can be predictable, if it were as simple as a diagnosis, implementing a plan, and carrying on with life, things would be much easier, but it doesnt seem to work that way, we jut dont know. The positive side tho, is medical science is not only recognizing crohn's/UC but has come a very long way in the last 10-5 yrs, who knows, maybe there will be a cure in the next few yrs!
Im sorry to hear you have had a real bad time with this, and thank you for your honesty in regards to preperation for what might come.

ps. I notice you suffer from migraine as well. I get cluster migraine's, and really really sypathise!!!!
07-01-2015, 08:35 AM   #7
Clash
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Welcome to the forum. I wanted to give you a link to the Parents subforum:
Parents if kids with IBD

http://www.crohnsforum.com/forumdisplay.php?f=49

There are a number of us and it's a great resource for experiences, info, venting etc!

My son was 15 when dx'ed and the learning curve was steep. Even though he has active disease at this point he is asymptomatic so we are just trying to get him into remission and possible mucosal healing. Even the more serious aspects like his small bowel resections haven't been nightmarish and he leads a normal teen life, work, social activities, sports. He will be a college freshman this Fall.

I hope your son finds remission quickly and long may it last!
__________________
Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira

Last edited by Clash; 07-02-2015 at 05:51 AM.
07-01-2015, 01:18 PM   #8
theresad
 
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Welcome to the forum, but on the other hand, I'm sorry that you have to join us.

I can relate to your story and to the emotions you are having around the dx. My son (also an only child) was dx'd at 17 - it is a true shock, and a great loss, and a process.

As parents who love and want to protect their kids, this disease is a real son of a b****. You grieve not just for the present crisis, but also for what the future holds.

Your son sounds very positive and very strong, and you should be assured that this will serve him very well as he goes through the process. There are so many people on this forum battling it out, and I have the highest respect for their strength and their fortitude - it is inspiring and helps to keep me strong.

It also reminds me that people with illnesses like Crohns are still capable of doing just about anything, and some seem to enjoy and embrace their lives more than the healthiest of people. That's an important lesson for us as parents and I have to remind myself alot that my son can still have a "life" - he will just face different challenges than the average young adult and the most important thing I can do is help him find his own strength.

Engaging in this forum for support, learning as much as you can about the disease process, the emotional impact, and treatment options, and encouraging your son to also learn as much as he can are good ways to start. Arming yourself with knowledge helps you advocate with the doctors, research new treatments, and take a holistic approach to the disease.

To me, while I do hate that we have to deal with it, this particular disease is oddly interesting, because it really forces you to take one day at a time, and to acknowledge that you can't predict what's around the corner. It is a real metaphor for life in a strange way. You do the best you can do, be the best you can be, in the present.

Anyway, glad you're here, and good luck to you and your son. Hopefully the trials and successes from this community will help you on your journey. My positive thoughts are with you!
__________________
Mom of son with Crohn's Disease
DX'd 2011 @ age 17

Current Meds:
Remicade (2015)
Imuran 100mg (2012)

Previous Meds:
Endocort
Lo Dose Naltrexone

Current Supplements:
EPA/DHA
AKBA
Iron
Vitamin D
ALIVE multi
Metamucil
Probiotics
07-02-2015, 04:12 AM   #9
MayaMeager
 
Join Date: May 2015
Location: Melbourne, Victoria, Australia

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Clash
Thank you, I would like to suscribe, your link didnt seem to work tho, will look into it.
I see you have been where were at! Your boy was also 15, and Im interested in hearing about your emotions and experiances so far. My son is doing really well right now, however I dont believe he is in remission as such, I think the prednisoline has done its job, but am very afraid that without it he will flare up again, just had resaults from last blood test, and the markers for inflammation are up again, he is coming off prednisoline and moving on to Azathioprine, so a bit concerned right now.
07-02-2015, 06:06 AM   #10
Clash
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I think I've corrected the link so try it again. No need to subscribe it is just a sub forum of this forum. Just click the link in my post above and it should take you to that part of the forum.

It has been quite the journey for us. My son was put on remicade straight away at dx due to the severity of his disease. We spent over a year and a half upping dosage and tweaking the schedule and adding methotrexate trying to get my son into remission. The meds really took care of all his symptoms but each time we scoped or had imaging done there was a nasty bit of area that wasn't fully responding. So last August my son had a small bowel resection. We had hoped that remicade would then be able to control the disease but unfortunately C had developed antibodies so we moved to humira. At 3 mos on humira a scope was performed and all thought visually everything looked fantastic biopsies showed active disease. So still fighting for remission.

It is an emotional rollercoaster and there are times you feel you are waiting for the other shoe to drop. But, C seems to take it all in stride, I tend to be the one who does the worrying! Ha! No, really after the initial shock and steep learning curve things do seem to even out. Since C is asymptomatic CD isn't the pervading thought of everyday. We just keep moving forward and hope he finds remission soon.
07-02-2015, 07:21 AM   #11
Axelfl3333
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Join Date: Mar 2013
Location: Coatbridge, United Kingdom
Welcome to club no one wants to join.hope your son is doing well and continues to do so.
07-03-2015, 03:28 AM   #12
MayaMeager
 
Join Date: May 2015
Location: Melbourne, Victoria, Australia

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Axelfl333: Yes mate, its a real bummer I had to join! Thanks for your welcome!

theresad: I wanted to reply to you last night, but run out of time! Im really not sure if Im doing any of this right, should I reply by private messaging? or just kepp replying on the thread? I dont want anyone to think I have ignored or not heard them.

But what I wanted to say is you made some really important points, and I take on board what you have said very strongly. Firstly, yes, it hurts like hell for the now, seeing our children, or anyone for that matter! In their present state, not really knowing from week to week what will occur or raise its ugly head, but also the thoughts of the future, I cant stop thinking about what may be in store for him, his future wife, children, career, etc. That seems to be another level of hurt.
However on the other side of the scale, I believe with all my heart that there is no reason he cant live a fantastic and fulfilling life! And I believe that due to this, it will make him a stronger, more capable man, we have caught this early in his life, so with knowledge the managment of this disease will become a natural part of his life, and his own positive attitude goes a long way to winning the battles he will need to fight.
07-03-2015, 10:19 AM   #13
theresad
 
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Location: Chicago, Illinois

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@mayameager - i haven't figured out the exact protocol is for replying to others either I always reply in the comments and I have just started jumping right in to questions and threads. I don't have as much experience as alot of others on the board but I try to lend what I can because they help me so much to stay sane when things come up. Of course please feel free to PM me anytime if you ever want to chat about anything or have a rant! My son was on Imuran/AZA to start, so I can give you my insights with that if you want. Unfortunately it stopped working after a couple years so he now has to move to something else. He is having a rough go right now, but we are taking it one day @ a time.

It sounds like your son is holding steady on the current treatment, and that's really wonderful. I wish you stability and success on his current treatment, and strength to deal with whatever decision comes next. He will absolutely get through this. I have found my son to be pretty strong (and even stronger than me) through the process. He's probably not as positive as your son, but he's pragmatic, and that works for him too

GOOD LUCK and if I can ever help, just let me know! I can assure you that you're in the right place for support.
07-03-2015, 07:55 PM   #14
Axelfl3333
Senior Member
 
Join Date: Mar 2013
Location: Coatbridge, United Kingdom
Jumping in is fine but once in a blue moon I,ll send a private message basically for a gab.i think the odds for a very effective treatment/cure for crohns is really very likely and for children and teenagers I have no doubt they,ll not be saddled with it forever.
07-07-2015, 02:38 AM   #15
MayaMeager
 
Join Date: May 2015
Location: Melbourne, Victoria, Australia

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I hold strong to that belief Axel!
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