Crohn's Disease Forum » Your Story » Help not sure I am making the correct choice

05-25-2014, 05:31 PM   #1
Join Date: May 2014
Location: Portland, Maine
Help not sure I am making the correct choice

My son, 17 yrs old, has had no health problems and he wakes up with a bad stomach ache then the next day tenderness on right side of belly which led us to the ER. 4 days later bad stomach ache in the morning but was fine 30 min later. He had a colonoscopy the next day and his small intestines are very angry, swollen. The GI took a biopsy and waiting for results. He started prednisone 40mg the same day as the colonoscopy. My son has no symptoms and feels great. The GI doctor diagnosed Crohn's in 2 visits and wants to put him on americade right away. Is this diagnosis too soon? Shouldn't other less invasive medicines be tried first? There were no symptoms prior to one week ago.....he doesn't have any symptoms of Crohn's except the swollen and angry small intestines. Could this be a wrong diagnosis? Maybe I just don't feel in my heart this is Crohn's and I don't know the right next move. Any advice please would be helpful.......

Last edited by Nmandy; 05-25-2014 at 06:32 PM.
05-25-2014, 06:59 PM   #2
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Clash's Avatar
Join Date: Apr 2012
Location: Georgia

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You could seek out a second opinion. Did the GI dx Crohns on the results of the biopsy? Usually the biopsy is considered the gold standard when granulomas are found. The only problem is granulomas aren't always found when biopsies are done on CD patients.

My son's CD is located in the terminal ileum of his small bowel. Throughout dx his bowel movements were never concerning or anything that came to mind. He had severe stomach aches and before we could get him dx'ed(about 6 mos) it had progressed to mouth ulcers, night fevers etc.

His disease was deemed severe due to the inflammation and swelling although only in a small part of the TI, the rest of his bowels were pristine. We went straight to remicade as studies show that the biologics used within months of dx can lessen the risk of damage and future surgery.

There are several top children's centers that will give a second opinion based on reacords you send. Some of them are CHOP, CCHMC and Boston's children's, I think.

Good luck in your search for answers.
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
05-25-2014, 08:33 PM   #3
Join Date: May 2014
Location: Portland, Maine
Thank u so much for your reply. I just have a hard time accepting this diagnosis in my 17 yr old that has never been ill and has thrown up probably 3 times his entire life ..... But like u mentioned I don't want to wait and have other symptoms appear..... A lot to think about.
05-25-2014, 08:52 PM   #4
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Location: Georgia

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I think a records review by one of the peds IBD centers listed above might give you some peace of mind going forward concerning dx, treatment approach and a way forward. Most GIs welcome this approach and will get everything together for you to send.

We do have several kiddos here that didn't show many symptoms, some only had the symptom of lack of growth.

My son doesn't tend toward D, if anything maybe C. During his first flare, his bms were 1 x a day to 1 x every other day. He was 15 at the time of dx and almost 18 now(sept).

The most important thing I've learned from this forum is to be an advocate, ask questions, journal symptoms, make lists of what you want addressed before the appt. If the GI says it's "A" then what is his reasoning? If he wants to use treatment "B" then what is the reason, how long til it reaches therapeutic levels and healing occurs, how often will my son be monitored, if "B" doesn't work what is his next plan of treatment.

My son has been on pred, remicade, remicade with oral methotrexate and finally injectable methotrexate. Of all of these he would refuse to do pred(prednisone) again. The side effects were horrible and he got no positive results.

Others will be by soon, I'm sure. I'm going to tag my little penguin, she knows a lot about records reviews/second opinions, Tesscorm her son was dx'rd about the same age as yours and Dusty because she is well pretty much a guru when it comes to CD, she has two kids who are in remission after surgery. These are the people that keep me sane, or as close as I was before CD.
05-26-2014, 05:29 AM   #5
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DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hi Nmandy and

Oh my, I am so sorry, what a shock all this must be for you.

Clash has given you fab advice hun. Could the diagnosis be wrong? There is always that possibility which is why it is imperative to have clear and solid answers. Having said that, if the GI is experienced with IBD and confident in their knowledge they can diagnose on sight alone.

There are two things that fit very neatly for Crohn’s. Your son’s age, the peak age for Crohn’s to show itself is 14-24, and the location. Crohn’s affecting the ileum (part of the small bowel) alone or ileum/colon represents the vast majority of cases.

My son was also diagnosed at 17. He was much like your son and I well remember saying exactly has you have…”This kid has literally had a handful of sick days in his entire life.”

Matt had an episode of vomiting one night, was off his food for a few days and then another night of vomiting, that was it. Now the thing is I also have a daughter with Crohn’s and if it wasn’t for that I wouldn’t have come close to taking Matt to the doctor as his symptoms were so mild. As it was his CRP (a blood inflammatory was raised), all other bloods normal. They repeated a week later and it was further raised. The GP palpated his abdomen and could feel a mass in RLQ (where your son’s problem is) and he thought there and then he had Crohn’s. Ultrasound confirmed thickening of the Terminal Ileum and a few days later the GI confirmed Crohn’s via a scope.

Some people to have next to no symptoms when diagnosed. Is there anything else, when you look back on things in the past 12 months, that may have been a sign?

There were a couple of things with Matt:

1. About 6 or 7 months prior to diagnosis he complained of mouth ulcers. Not huge amounts, just one or two at time but he always had them. I started him on B complex and they went away. Never gave them another thought but mouth ulcers can be an EIM (Extra Intestinal Manifestation) of Crohn’s and the EIM’s can be present for months or even years before the intestinal symptoms or evidence shows up.

2. About 2 months before his diagnosis my partner and I commented on how tired Matt looked, he was pale with dark circles under his eyes. We found many reasons for this...juggling school and university and playing a LOT of competitive sport…but again, I think it was just another ‘silent’ symptom.

As hard as it is right now try and take a deep breath and wait until you get the biopsy results and have another consult with the GI before making any further decisions. If he is adamant it is Crohn’s ask the following questions:
  • What is my diagnosis?
  • Where is the disease active?
  • What form does the disease take (inflammation, ulcers, fistulas)
  • How severe would you say my disease was?
  • What symptoms do I need to report immediately to you, which can wait until my scheduled appointment, and which signify an emergency?
  • What treatment options are open to me?
  • What does (treatment) do? What side effects should I be aware of?
  • How long before I should see an improvement?
  • Do I need to take any nutritional supplements such as b12 or iron?

A second opinion never hurts mum and if that is what you need to do to be comfortable with your lad’s health then do it. If they also say Crohn’s then having that validated is priceless.

Good luck and welcome aboard!

Dusty. xxx
Mum of 2 kids with Crohn's.
05-26-2014, 05:55 AM   #6
Join Date: May 2014
Location: Portland, Maine
Thank you for the information. Did your doctor recommend Remicade for your kids? That scares me with the info on this biological drug. No long yerm data on Remicade. Especially for a 17 year old. I noticed both of your kids are on Imuran. My doctor didn't mention this drug.
05-26-2014, 06:05 AM   #7
Join Date: May 2014
Location: Portland, Maine
There is no red flags that I can think of for my son over the last couple of years
He hasn't even been sick. I think I will get a 2nd opinion just to ease my mind. My son ate a burger the night before at a movie theatre which now he said "tasted weird" but he was so hungry he ate it anyway. Boys! They did test his stool when in the hospital but the doctor said they don't test for all food poisons. I was leaning towards that too as the next morning he woke up from eating the burger his stomach hurt. The doctors just shake their heads NO so we go on from their.
05-26-2014, 06:32 AM   #8
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Join Date: May 2010
Location: New South Wales, Australia
As Clash has said, Remicade has far better outcomes than Imuran does and that is why the GI would be recommending it.

If your son does have Crohn’s it is all about minimising the damage ASAP and once the inflammation is under control getting onto something that steroid sparing. For most people Prednisone is a fab drug, achieves results fast and leaves you feeling great BUT it is not a long term drug and the side effects are none too pleasant.

Another plus for Remicade is for most people it works quickly.

Starting with biologics is called the top down approach and starting with 5ASA’s and/or immunosuppressives is called the step up approach.

Imuran: It is an immunosuppressive and is the class of drug below the Biologics of which Remicade is a part. It is very effective for some but on the downside it has a long lead in period. It takes at least 3 months to become fully therapeutic and for some as long as 6 months.

My son was earmarked to go onto another of the biologics, Humira, if Prednisone and Imuran did not work but we didn’t make it that far as complications set in which ruled Humira out and surgery in.

There is one main reason why both of my kids are on Imuran. They both needed surgery very early on in their diagnosis period, for my daughter surgery was how she was diagnosed. Surgery put them both immediately into remission and in Australia medication is subsidised by the government. Because they were in remission they did not meet the criteria for the biologics so Imuran was the next best thing.

Dusty. xxx
05-26-2014, 08:47 AM   #9
my little penguin
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DS was dx at age 7 .
He was placed on remicade at age 8 after a year of misery .
He had very little symptoms at dx - constipation , rectal prolapse and very slow weight loss but that took months of review by the GI prior to the colonscopy .
I can say once he was dx his symptoms got worse with time .

Remicade was the best since it has the highest rate of changing disease course when used within 3 months of dx. It reduces the likelyhood of surgery which is 75% chance with crohn's btw.
All drugs are scary even Tylenol has a high death rate as a risk due to Steven Johnson syndrome - never was told that by the ped since like all side effects it's was rare .

Risks of dying for kids under 14 US
Car 1 in 250
Drowning 1 in 1000
Tcell lymphoma without Ibd just average person the street 2 in 10000
Tcell lymphoma with immunomodulators plus biologics 4 in 10000.

That said we take risks every day without a thought
Leaving crohn's in treated or under treated is dangerous and can be deadly since you can't see the damage on the inside .
You can live without a large colon but you can't live without a small intestine .
My goal for my kiddo is to keep as much of they small bowel as healthy as possible as long as possible.

As far as second opinons - record reviews are easy
Call any of the top three places

They will tell you to send biopsy slides
Imaging cd
Medical records etc...
Then you can get a second opinOn
Timing is usually about two to three months from the call until the actually appt.
This can be a while to leave crohn's untreated .
We started remicade before one of our second opinons since waiting was not the best options .
The second opinOn gi confirmed the same treatment .
DS - -Crohn's -Stelara -mtx
05-26-2014, 08:59 AM   #10
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I was the exact same, I was healthy and nothing changed apart from the odd stomach pains. I was diagnosed with Crohn's 2 weeks ago and I wouldn't of known any different if it weren't for the colonoscopy.

Like someone has already mentioned you could seek a second opinion although earlier treatment I've been told is best to keep the disease in check.
05-26-2014, 09:24 AM   #11
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Location: Ontario

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My son was almost 17 when diagosed. Until he began to show symptoms a few months before diagnosis, he was rarely sick at all! And, most of his early symptoms were easy to explain away --

fatigue - he'd started a new daily 2-hr phys.ed. program on top of hockey so understandably tired;
pale/dark circles under eyes - he's very fairskinned amoungst a family of 'olive' skinned and it was mid-winter so no sun... he just 'looks' white compared to everyone else, his usual 'whiteness'
weight loss - same new phys.ed. program...
night sweats - his room is too warm
canker sores - new toothbrush
first few rounds of diarrhea, nausea - stomach flu that's going around, he's just having a tough time fighting it off completely...

Sometimes symptoms can come and go for a while, as they did for my son, however, the symptom free periods did get shorter and shorter. After trying to fight off the 'stomach flu' for a couple of months, his ped recommended we go to the children's hospital's ER to avoid the wait time through a referral. We did this and he was tentatively diagnosed within a couple of hours with only ultrasound and bloodwork results. He had a colonoscopy a few days later which confirmed the diagnosis.

His initial treatment was exclusive enteral nutrition (EN or EEN) - a liquid only diet for six weeks. The EN formula provides all the necessary nutrition and allows for bowel rest and healing. This took him into 'clinical' remission (means no apparent symptoms). He stayed with supplemental EN (1/2 dose with regular diet) for almost two years as his only treatment. EN did control his crohns, in that it did not worsen, however, MREs continued to show some inflammation. We eventually added remicade to avoid permanent damage to his small bowel.

As MLP said, we take risks every day... although I hated the idea that my son needed remicade and I would still love to stop it!, untreated or undertreated crohns has severe side effects as well. If I were to research the risks of teenage driving, injury through competitive hockey, etc., etc., I'm sure I'd find they are much higher than remicade yet I allow the driving, hockey, etc. because it improves the quality of his life - remicade does the same... without it, his quality of life will worsen. And, if I'm willing to take the risks for 'fun' reasons, makes sense I'd take even lower risks for health reasons. It may not be a perfect comparison but it's how I've justified and understood the need for remicade.

I've also read that using remicade as a first treatment and soon after diagnosis has the highest rate of success - another of my 'justifications; is that if we were going to use it eventually, we may as well use it when it had the greatest chance of working.

These aren't easy decisions and it can seem overwhelming at the beginning! As your son is already on pred and remicade can work fairly quickly (so little delay in becoming therapeutic), you may have a bit of time to make your decision and get a second opinion.

Tess, mom to S, 22
Diagnosed May 2011

May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
05-26-2014, 09:39 PM   #12
Join Date: May 2014
Location: Portland, Maine
Thank you so much for being so honest with your life with CD it is truly appreciated. What is your thoughts if there were no red flags on my son prior to last Saturday literally. A lot of information that I have read on this forum that a lot of people diagnosed with CD had chronic issues with stomach pain, diarrhea, fatigue, etc. My son had or have any of the symptoms. But I will find out this week on the biopsy. Wish us well and again thank you all for the advice and info 😄

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