HealingWell
Search Close Search
☰

Recently Diagnosed

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/25/2012 8:01 PM (GMT 0)
Hi I am the mom of a 16 year old son who was diagnosed with crohn's in Nov 2011. My son had an appendectomy in August 2011, and came to me late one night in November 2011, complaining that he had the same pain that he had prior to having his appendix removed. After a few hours of vomiting and him been unable to poop I took him to the ER. In the ER he was treated for constipation with an enema, we were told to get mirlax at the drugstore and we were sent on our way. After coming home he started to vomit again and I had a gut feeling that something was wrong so I took him back to the ER. Many doctors later and a CT scan revealed that he had some thickening near where he had his appendix removed and that there was a possibility of scar tissue. He had an NG tube inserted and from there our lives totally changed it turned out that he had a complete bowel obstruction. He had a small bowel resection three days later and a few days after that the pathology confirmed that he had crohn's right where the small and large intestine meet. Although the hospital stay was long and discouraging at times, he made a great recovery and went back to school within a month.
After a colonoscopy and endoscopy in January his GI doctor said that he had a small ulcer around the area where he had the resection and small ulcers in a few areas of his transverse colon. Although small the inflammation was on the higher end. The surgical area showed no signs of narrowing though. He currently takes asacol 800mg twice daily and this is third week taking 75mg of 6mp. His first labs were normal, platelets were slightly elevated. He gets more labs this Monday. At first the doctor only wanted to do labs once a month, but after I told her that I was not comfortable with this she agreed to do them more frequently. He has no pain whatsoever and 2 to 3 bowel movements a day. I am so worried about the 6MP, I was wondering if anyone had similar symptoms to my son and if it is really necessary for him to be on 6mp. Thanks so much any advise would be greatly appreciated. I just feel so overwhelmed and I want to make the right decisions for my son until he is of age to make his own decisions.
Posted 2/25/2012 9:06 PM (GMT 0)
Hi there,

Up to a point your son's story sounds so much like mine! Mine was diagnosed at 16 in Nov 09(what is it with 16 year olds and diagnosis in November ;) ) Unbelievably he also had appendicitis and had his appendix removed prior to this, can't quite remember when but think it was in the March time of 09. At the time I thought all the tummy issues would be resolved after the appendix removal but unfortunately that wasn't the case. he later (Nov) had a colonoscopy whereby they diagnosed crohn's swiftly followed by a barium follow through as they suspected a blockage/stricture but fortunately this wasn't the case.
Different treatments followed like anti-biotics/steroids/asacol/pentasa/enteral nutrition and eventually found a combination that has left him in a stable condition(Pentasa/Azathioprine(similar med to 6mp))
It is really frightening when they suggest Azath/6mp and I thought that the Drs were jumping the gun a bit, however once you get past reading about all the side affects and your son's health improves you do tend to worry a little less.

I was a little concerned where you mention that your son's GI only wanted to do blood tests once a month, I believe the 'norm' is more like once a week for the first month, then every fortnight for 2 months and then, if everything is well they should be blood tested every 3 months. I think you were right to say you were uncomfortable with initial tests of once a month.

It is so overwhelming initially and there is so much that you can read, infact almost too much initially and you almost go into meltdown, try and pace yourself. It is so difficult initially because you convince yourself that your son's life is over, so to speak(well I did anyway) Two years down the line I am 'happy' that these drugs have worked for him and currently he is doing really well(has even gained over 40lb in weight!)
What the future holds I don't know but we will face that one if/when needs must. I am not trying to sound flippant, it is tough. Give yourself time to adjust, keep researching and reading but try not to get bogged down by things that don't apply yet.
Many, many patients are on 6mp/azathioprine and for the majority it keeps their disease in check for many years.
Posted 2/25/2012 9:12 PM (GMT 0)
Thank you so much for replying to me. It is so reassuring to speak to someone who is going through this ordeal. I am going to hope for the best and keep up with the blood work and try to relax a little. Glad to hear your son is doing so good. I will keep in touch.

Take Care
Posted 2/25/2012 11:07 PM (GMT 0)
Thank you so much for your kind words. I am so sorry that you had to go through so much and I hope you are feeling well now. Wishing you all the best.
Posted 2/26/2012 12:11 AM (GMT 0)
Hi again, My son is an extremely quiet shy boy. If anything good has come since diagnosis is that he has become more vocal. He seldom complains about his situation and even when we were in the hospital he looked very scared but never expressed this to me. I would love for him to go on the site and talk to people his own age that are going through what he is dealing with. Eventually I think that he will. He has tremendous support from our family and his friends are great to him too. What is eating me up inside is that he must have not been feeling well for some time and did not tell me. Well I guess that there is no point in looking back now and only hope that things will be good for the future. Once again thank you for getting back to me. Take Care.
Posted 2/26/2012 9:30 AM (GMT 0)
Me again :)
It is important to give them time. Initially it is all too easy to almost constantly be asking them how they are feeling, like whether they have stomach pain or bowel issues and you almost 'forget' that they are actually the same person as before the diagnosis and have another life separate from the illness.

My son never complains even when he is in bed doubled up in pain, he literally just gets on with it(although not had that for a fair while now since a good combo of drugs found for him) For him, he has crohn's, end of.Support groups etc just do not interest him (I don't know if that is a good or bad thing tbh) His friends know he has it and just accept it. I think it would be fair to say(esp when he was 16) that their parents were more concerned if he spent the day at their homes. I can remember getting a call from one parent saying that he had eaten a burger/fries from a well known food chain and they were concerned whether he would be ok. Some days he would go out and eat nothing for the day but friend's parent's got to know that this could be 'normal' for him at any given time.

Don't beat yourself up re he could of been unwell for some time. I think for many youngsters they almost accept their pain as being normal for a time. For a few years I was going back and forth to Dr because, in the main, he wasn't growing and was severely underweight, and yet my concerns were constantly dismissed. When I was eventually listened to I was relieved and then extremely angry at the Drs, followed by anger at myself because I should of 'pushed' harder for them to do something. The point is that you will always blame yourself for not noticing/acting quickly enough/or for not getting listened to.

I personally think that one of the hardest things about a diagnosis at 16 is that they aren't really children anymore but equally they aren't mature enough to fully make decisions on their own either.

Give yourselves time to adjust and adapt. It does all eventually full into place.

tsitodawg-Can I ask if you could put some paragraphs/spaces in your replies(pretty please) My eyes go boss eyed trying to read it in one block lol.

Post Edited (vixen) : 2/26/2012 4:10:02 AM (GMT-7)

Posted 2/26/2012 12:40 PM (GMT 0)
Vixen:

I feel like you must be hiding somewhere in my house because what you write is so typical of what goes on in our daily life. How are you feeling is the first thing that comes out of my mouth each morning. I am after getting better about asking him every time that he goes to the toilet if he pooped at one point I felt like I was counting the times and how long he was in the bathroom. I sure he must be going crazy with me some days but again he never lashes out, maybe one of these days he will.

My son is not strong to look at and as I mentioned before quiet and shy, but I feel and know that he has a strong will about him and that he will and is dealing with this better than me.

I really hope that as you say time will help and that when I go to bed at night and first thing in the morning crohn's will not be the last and fist thing on my mind.

Thank's for listening
Posted 2/26/2012 5:15 PM (GMT 0)
LOL :D it does get easier honest especially once the meds kick in fully.

Has your son been affected growth/weight wise? Mine was 5' 5 1/2" and weighed around 90lb and extremely pale, so yes he too was not strong to look at and almost because of this you do tend to think that they are younger than they actually are (and make excuses if they fail to do something, afterall they are ill ;) )

Some youngsters just grit their teeth and get on with life, almost unaware of the frantic worrying we do as parents. I believe that when mine was diagnosed he did a brief internet search to get the general idea of the disease and that was it.
I spent months on end researching and worrying about the very worst things that could happen and spent several evenings in tears too. I guess if I am honest, I should of researched a little less and son (in an ideal world) should of been just a little more proactive but I guess age plays a huge part here and he trusted that I would do the research on his behalf (he tends to accept what the medical profession tells him without questioning it)

He is now at the age where responsibility is techically his and I always ask him if he wants me present at appointments (which he does) I guess the really hard part comes when he wants to go solo!

Rather than think he is dealing with this better than you, think of it that he is dealing with it differently(most likely accepting it but doesn't want to know any more) Why should he worry about the details when he has mum who will do that for him :)

You are both going to do fine
Stay in touch
Posted 2/27/2012 3:34 AM (GMT 0)
Hey Dingleeire! Another user showed me this thread & I hope maybe I can be some help to you & your son?

 I am 15, so I am close to your son's age & can understand all the frustration this disease brings!

My mother is like you IN A LOT OF WAYS! In fact, if I didn't know better & didn't have a 16 year old brother I would think you WERE my mom! Hahahaha

My mother gets worried about me a lot because I tend to not complain or share my symptoms with them or doctors because I hate feeling like a complainer(bad part on me). She looks up every prescription I get on the internet, makes sure she knows the side affects so she can watch out for me. She seems to be best friends with all the pharmacists at CVS because she wants the inside scoop on the medications I'm taking Hahahaha so I get where you are coming from! Hopefully my mom wil let me go into my GI/Rhuematology appointments alone when I start driving but I doubt it Hahahha. My mom does annoy me sometimes when she always asks "How are you, sweetie?" I remember getting angry once & saying "I'm feeling like crap, like always!" but I realized she does care.

I must say, I am SO happy my mother didn't refuse the biologics & other serious medications my GI has/had me on because 90% of them have done wonders for me! I'm not perfect by any means when it comes to my Crohn's but if it wasn't for my mom taking a risk with Humira after I got drug induced lupus from Remicade I would be back in the ER every two days!

I always tell my friends(the few I have that have stuck with me through this disease) that "I hate people!" as a joke because I hate making 'new friends' only to have them drop me when I need them the most during this disease but as you get more familiar with the disease & get comfortable with it you, hopefully, become an advocate! I now do reports on Crohn's, presentations, etc at school so I can raise awareness! Believe it or not, I get a lot of guy attention now because I am not afraid to be like "Okay. I have bad gas..." wink

I still am not completely comfortable with all the embarassing stuff this disease brings but you HAVE to get used to it. PLEASE get him to go to the CCFA Summer Camp! He's old enough to be a camp counselor with me! This will be my first time attending the camp but I think it'll be fun to meet other Crohnie's and council kids with it! PLUS, doctors are always on camp site :-)

Who knows! Maybe your son can be a camp counciler with me if he lives in the same region as I do?! That'd be cool to meet someone from Healingwell! If you'd like to talk more PLEASE email me :)

Posted 2/27/2012 11:58 AM (GMT 0)
I've been reading this thread with great interest and have to say at the outset that as a Mum i empathize with both of you . I am sorry to hear that your children have Crohns .Crohns is difficult to deal with as an adult and must be very daunting for someone so young to deal with.I think it's great that you both hooked up here and are sharing your experiences,my thoughts and prayers are with you and your families,Slainte

Keepingwell, you are an exceptional young person and an inspiration to others,I hope all goes well with your planned summer camp,you are a great ambassador for young people living with Crohns,God bless you,Slainte
Posted 2/27/2012 1:56 PM (GMT 0)
Conmire:

Thanks for your reply. I too am from Ireland (CorK) and you know how us Irish mothers are with our son's under normal circumstances never mind when things are wrong. It is just breaking my heart but I know that I should be thankful that he is in so much better shape than other people that I am reading about. I am so happy that I finally joined the forum. The past few months I have just read it daily. I feel so much better talking to people who understand what we are going through. I am hoping that my son joins I think that it would do him good talking to people his own age that are dealing with the same issues.

Take Care

Slainte.
Posted 2/27/2012 2:05 PM (GMT 0)
Keepingfaith:

Thank you for your reply. I have to say you are one extraordinary 15 year old. We live in Boston. I am going to try and get my son to join and talk to you. I think that it would be very good for him. I too am best friends with the pharmacists at CVS. They probably are ready to scream when they see me at the consultation desk all the time. Worry that's what us mother's do best.

Take care of yourself.
Posted 2/27/2012 2:23 PM (GMT 0)
Hi Vixen:

My son is 5'9" and he now weighs 125lbs, he is skinny but not too bad he is and has been always very pale. When he got sick in November he went down to 114lbs so he is dong quiet well with weight gain. Tommy loves to play basketball but always lacked the energy to do the training and after games he would be totally exhausted. He has not played since his surgery but he has started exercising and shooting the ball for the past two weeks. Actually he is a lot taller than a lot of the boys in his class.

With regards to the appointments he still likes to have me there. Basically he just sits there answers questions when asked, but would never ask a question to the DR. Probably my fault because I have lists of questions at every visit. I know that I annoy him at times been so overprotective but I also know that he finds it reassuring that I am on top of everything.
Posted 2/27/2012 2:28 PM (GMT 0)
Dingleeire.....Dia Ghuit agus conas ata tu? ...I should have guessed..."Dingle" and "Eire"....i'm borderline Cork myself..(County Limerick) it sure is a small world, it's great that you've joined here, there are lots of good folk on here who have a wealth of experience between them and are always willing to share/listen and advise, i hope too that in time maybe your son will join also,in the meantime i wish you both the very best of Irish, Slan leat agus beannacht De mo chara.
Posted 2/27/2012 4:10 PM (GMT 0)
Hopefully once the drugs fully kick in you/he will see such a difference. My son too was very, very pale and over the months his face filled out and the nasty paleness was replaced by healthy colour. Sometimes changes happen so gradually that you don't really see them, but then you look back at old photos!!

Your son sounds identical to mine at appointments (and I have the lists :) )
✚ New Topic ✚ Reply