17 year-old just diagnosed

[crohns suffer"s mum]

hi
i have a 17 year old newly diagnosed teen and we are certainly finding out how difficult life can be with such a debiliting illness.
we were fortunate to have had an early diagnosis (2 months) but are still feeling the effects. harry has missed alot of school and is tolerating his modulen only diet with much disgust. luckily he is a week away from trying solid food for the first time in 6 weeks. he is on azathaprine which has caused hair loss aching belly and extreme tiredness all of which his specialist said should settle after a couple of weeks.
This forum is invaluable for Crohn's families and i thank you all for your support

 

[Cat-a-Tonic]

Hi crohns suffer"s mum, welcome to the forum. I've moved your post to the Parents section as you'll likely get a lot more replies in here.

 

[Jmrogers4]

Welcome to the forum.
We have a few other mum's who have older teenagers, tagging clash, tesscorm, patricia56.
My son will be 15 next month and was dx'd when he was 10.
Azathioprine does take some time to become fully theraputic so hopefully he will be seeing relief soon. How often are they doing blood tests?
My son was so happy to eat "real food" again. Even eating stuff he never liked before. I had made mashed potatoes the night he was able to add food back and he had never liked them before and thought they smelled so good he asked for some and now likes them.
Please feel free to ask any questions or just vent. That is what we are all here for.

 

[CrohnsKidMom]

Welcome to the forum, but sorry to hear of your son's dx. My son was dx'd last yr at age 8. It is very stressful, but if you get a treatment plan that works for your son, you will see him improve and you will be able to breathe a little easier. It takes Aza about 3 months to kick in, so hang in there!

 

[Clash]

Welcome to the forum. My son is 17 and was dx'ed 2.5 years ago. It was so much info to take in early on and this forum was invaluable for information, support and venting through the hard times.

My son uses an ng tube nightly for supplemental EN, he has never been on exclusive formula. At the highest, he was on 90/10(90% formula and 10% food) so we haven't had the struggle that others on here have faced with no food. But it is awesome that he is only a week a way from food intro! What a trooper!

My son hasn't been on azathioprine but has been on methotrexate in oral form then injection form, it is another type of drug in the immunosuppressant class. He was also on remicade for two years as well.

This illness can affect "teen life" so dramatically from academics to sports to social settings but when themeds start working you'll find all the aspects much easier.

I hope you son finds remission soon!

 

[Maya142]

Hi and welcome! My daughter is 17 and was diagnosed just over a year ago. We just added Azathioprine to her list of meds about 3 weeks ago, and she had nausea and fatigue but it seems to getting better already.
Hope your son begins to feel better soon!

 

[crohns suffer"s mum]

hi thanks everyone for your replies. i appreciate the support.
smrogers4 harry is having blood tests fortnightly now and so far specialist happy with the results. after this he will have them monthly for a few months and then 3 monthly whilst on azathaprine.
he is hopeful that he will settle as i am cause dont want to go through the changing of a med.

 

[Catherine]

My 18 year old daughter was dx at 16 and is currently on Azathioprine. She is currently having blood test every two months.

 

[crohns suffer"s mum]

hi hope your daughters doing ok. harry is managing on the azathioprine but is very tired and has some belly pain which comes and goes .

 

[awmom]

Hi there! My son is 18 and was diagnosed 4 years ago. Its hard for all kids, but teens come with their own set of issues as they start to want to gain independence. It is wonderful that you got a diagnosis early on....you are already ahead of the game and can hopefully get it under control soon. The meds take a while to start working so give it time. This is a great forum for info and support so keep checking in and let us know how his is!

 

[my little penguin]

Welcome
My son was dx three years ago at age 7.
He is ten now.
It takes time but you will find a normal .
Most find it about a year after dx .

Hope things calm down soon with the Aza

 

[Tesscorm]

Hi, sorry you've had to find us due to your son's diagnosis but it is a great place to come for advice and support. :ghug:

My son was also diagnosed just before turning 17 and he also did the six weeks of EN. He also continued with EN as a supplemental treatment and continued to ingest (he did his through NG tube, overnight) 1500 cal/day. I really do believe the nutrition he gained from this helped him in many ways (nutritional status, weight gain and stability, etc.)

I've added links to two other threads - Kids' success stories and Kids on EN - I think you'll find the information in both threads very helpful.

http://www.crohnsforum.com/showthread.php?t=36345
http://www.crohnsforum.com/showthread.php?t=27079

As was said above, it does take a bit of time for some of these meds to work. But, certainly not easy asking a 17 year old to be patient. :ghug:

Good luck :ghug:

 

[Farmwife]

Hi and welcome.
My Grace is 5 but dx at 3. For some it's a long road to remission but just know he'll get there.



HUGS

 

[Sascot]

Hi and welcome. Hope the side effects settle down on the Aza. If not it might be worth trying 6mp which is similar, but easier for the liver to cope with. My son couldn't tolerate Aza but is doing well on the 6mp.

 

[crohns suffer"s mum]

hi thanks all for your replies. i am finding your comments very helpful and making my life slightly less stressful.
thanks tesscorm for the links. i will definately read.

 

[Patricia56]

Welcome, unfortunately. My son is 18 and was diagnosed at age 10.

When giving AZA you may want to keep the following things in mind:

Do not give with milk; limit large consumption of milk products
Try giving at bedtime so he can sleep through any symptoms
Fever over 101.5 should be reported immediately
Fever of 100.5 twice in 24 hours should be reported

Here is a link to a very informative article about these meds that you may find helpful.
http://www.med.unc.edu/gi/specialties/ibd/images/treatment-of-ulcerative-colitis/IMURAN 6MP.pdf

 

[crohns suffer"s mum]

thanks patricia 56 . the article is very informative

 

[crohns suffer"s mum]

hi just wondering if anyones teen has suffered stomach pain on azathioprine.
harry doesnt experience nausea and vomiting as seems to be the case with lots of people on it .the pain is nowhere as bad as at initial diagnosis but is getting him down a bit.
Im wondering if spitting the dose would help. Anyone had experience with this.
hes seeing the specialist on tues but just curious to heare your thoughts.
thanks in advance

 

[Patricia56]

Be sure to mention the pain when he sees the specialist. In rare circumstances AZA can cause pancreatitis which is pain in the center or around to the left in the upper abdomen. Usually the pain is worse after eating. It's important to catch this early and usually requires bloodwork to confirm the diagnosis. Not saying that 's what this is, just wanted you to know about the possibility.

 

[Maya142]

My daughter just started Imuran and while she didn't have stomach pain (I think -- I'm assuming all her stomach pain is from Crohn's), she did have nausea and complained of a metallic taste (?). We split the dose and after a couple of weeks, it seems to have settled -- no side effects now.
Hang in there and good luck!

 

[crohns suffer"s mum]

so far all of harrys blood works have been within the range his specialist is expecting. he has only started on solid food as of yesterday . his only diet has been modulen and lollies.
he hasnt severe pain so hopefully no pancratitis but will definately be mentioning it to the doc on tues. thanks i will try split does and see how he goes. when he started low dose aza he had no pain and was more or less back to his usual self. his tummy pain has only started since 150mg of aza so am assuming thats what it is.
he is tolerating rice and chicken so far so good so fingers crossed all will settle.
thanks for your input. appreciated as always. as time goes by and i am more learned i hope to be as helpful to others

 

[crohns suffer"s mum]

after seeing the specialist today it appears that harrys problems arent azathioprine related but actually his crohns which hasnt responded to modulen therapy . his next step is a discussion with the surgeon as it seems as the specialist thinks that this is the way to go for him. he is only mildley effected and thinks that once he has a resection and continues on with aza he will more than likely go into remission. he doesnt usually consider surgery at such an eary stage but feels its a good option for harrys longterm wellbeing.
but scary but looking on the positive side

 

[Sascot]

Sorry to hear the Modulen hasn't worked as well as they hoped. Hope the appointment with a surgeon goes well

 

[crohns suffer"s mum]

thanks me too

 

[awmom]

Really sorry to hear the modulen didn't work for him. Has any other therapy been tried? Does he have thickening or a stricture? Is there scarring or is it inflamed tissue? How large an area is affected? I am only asking these questions because my son had a resection (was so scared) after they tried various therapies (prednisone, 6mp, liquid diet, pentasa, remicade). He developed a stricture and determined that is was scar tissue. They tried to stretch it out to seeif that would help and postpone surgery, but it didn't work. I was never positive going in that it was the right thing to do, but after it was said and done, it did help. Not as much as we would have liked, but he has been much more comfortable. Have you gotten a. Second opinion.....that helped us a lot. I think I would recommend that before any surgery.
Please let us know what you decide and how he is doing. I know a million things must be going through your head, so let us know how you doing too!!,

 

[my little penguin]

Big hugs
Second the second opinion
Get copies of all pathology /imaging reports so you can understand how they came to this decision .
Paging Dusty since both her kids had surgery early

 

[Catherine]

I'm also going to page a couple of people for their knowledge of the Australian system.

Aussie and Stefan

 

[DustyKat]

Hi crohns suffer”s mum and :welcome:

Ditto to the questions that awmom has raised, where is your son’s Crohn’s located and what is the nature of the disease…scarring (no treatment outside of surgery will fix this), thickening, fistulising?

My daughter was diagnosed at 14 and my son at 17. As my little penguin has said, they both required surgery very early on but for different reasons. My daughter went undiagnosed for a very lengthy period of time, only receiving her diagnosis during emergency surgery. My son on the other hand was diagnosed very quickly, within 2 weeks of showing very mild symptoms. His disease was rated as mild to very mild but he quickly developed complications that only surgery could rectify.

It is imperative that you establish exactly why the specialist feels that surgery is your son’s best option. The reason I say this is because the outcomes of resection surgery are final, once that section of bowel is removed you never get it back and some surgeries can leave lasting legacies. BUT in some cases it is indeed the best option over all others even when the medication path hasn’t been exhausted and disease isolated to the terminal ileum can produce very positive surgical outcomes.

As to my own two, they both have Ileal disease and both have been in remission since their surgeries, so 8 and 3 years respectively. They do have the issue of bile salt malabsorption diarrhoea caused by the removal of the terminal ileum but they control it well with the use of psyllium husks. Not everyone that has this type of surgery suffers with this side effect and in our case I do think there has been some natural take up over time. They also are on Imuran (Azathioprine) as a maintenance medication.

As a side note…most of my daughter’s pain was located around the stomach even though the disease was much further down in the bowel. Also if he does have Ileal disease there are other things…vitamin and mineral…that should be investigated. So let us know if that is the case and we can steer you in the right direction.

Welcome aboard and good luck with the surgical consult!

Dusty. xxx