Crohn's Disease Forum » Your Story » New to forum, mom of 17yr old son IBD

07-21-2014, 10:47 PM   #1
Join Date: Jul 2014
Location: Columbia, Maryland
New to forum, mom of 17yr old son IBD

Hi Wonderful People,
So my son was dx in May 2011, UC, then 2nd Dr said it was more "crohn'sish", now 3rd Dr who said it was crohn's in Dec 2011, now says it's UC. Feeling frustrated for several reason's, to be brief, feel like my son has been somewhat ignored, told he was doing great, and his pain, exhaustion etc was probably "just" IBS and should get counseling. So thinking it was more depression and anxiety, which I don't doubt is part of the situation, starting to wonder if he's ever really been in remission and if he has worse inflammation going on over the last 3 years, then anyone realized. Yes the major d got better, (still would come and go), and recent flare led to scope last month, (only to find out the Dr had none of his records due to the hospital going to electronic records) (he never told me this, I confronted him respectfully as he didn't know who had dx my son with crohn's (him) or if he'd done a scope before (he had) or that he was allergic to Lialda (wanted to put him back on it) Wanting to get another opinion, but since he turns 18 in October, wondering if I should wait, but really don't trust this Dr anymore. Have other folks had ongoing stomach pain, nausea and MAJOR exhaustion from IBD even if blood work is ok and no major d? His calprotectin was over 550, so that's why he did a scope, been on 6-mp and just added Uceris (no rx coverage, $878 a month, not sure its helping and don't think we can afford another month) Any thoughts/feedback would be appreciated. Sorry so long, this is my first post and first forum.
07-21-2014, 11:10 PM   #2
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

My Support Groups:
Hello, welcome to the forum

In my opinion, it is entirely possible to be in a flare and still have your bloods come back fine. Not that long ago I spent two weeks in hospital with a flare, all my bloods except my potassium levels were totally fine, but after I was discharged I got called back into outpatients because a fecal cal test showed 'very very high ' inflammation levels, my steroid taper was slowed, pentasa was introduced and I'm waiting on a scope to decide if we add azathioprine.

While I was in the hospital, my registra told me that she didn't really think bloods were all that reliable, and that they actually quite often get people who are flaring but have normal bloods, so they aren't really the best indicator in her opinion.

Remember that every one is different and the blood tests can still be a useful tool in seeing how your son is doing over all, so don't be put off getting them monitored.

I had a similar experience with my first adult specialist, he was very hard to get in with, hard to track down if I was admitted and never remembered who I was. The last time I was admitted it was under a different team, and things have been much better with them so far.

I'm not overly familiar with your health care system as I live in the UK. Here transferring doctors can be a lengthy process, so if you were going to change again in a month anyway then maybe it's time to change now? Over here you can start seeing adult docs from the age of 16 so it might be ok for your son to transfer a little early?

coeliac disease/Osteopenia /Crohns/Arthritis/cluster headaches/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
07-22-2014, 08:10 AM   #3
Forum Monitor
Clash's Avatar
Welcome to the forum. So sorry to hear of all your son is going through. We do have a parents sub forum located here, here is the link:

Also, there are quite a few parents that can't rely on blood work as it isn't an accurate depiction of the active disease going on inside. My son has always had normal labs even when scope and MRE have show his disease active and progressing. We also use Fecal calprotectin stool test as it is more reliable for him.

If your son is experiencing blood then I highly doubt he is in remission and only dealing with IBS. Did the GI give a reason for the blood if he was in remission? Also if he is dealing with fatigue it may be a good idea to get his vitamin levels checked, as CD can create deficiency issues. We usually have his vitamin D and B checked when he is getting his iron checked.

My son is 17, he will be 18 in less than 2 months, we have chosen to stay with pediatric GI care since his doc will see him on up into his mid twenties. I would probably go with a second opinion with a pediatric GI as well but that would just be my preference.

Hope you find some answers soon. I'm going to tag a few parents and they will probably stop by as well. These parents have kids around your son's age: Dusty, Tesscorm, Patricia56, and Maya142.
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
07-22-2014, 08:30 AM   #4
Tesscorm's Avatar
Join Date: Jun 2011
Location: Ontario

My Support Groups:
Sorry you and your son are dealing with this!

How long has he been on 6MP? If he's been on it for a long time (over a year??), then can you ask the GI why he thinks it's working if he still has inflammation? And, if a different maintenance med shouldn't be considered.

I don't have any experience with Uceris but, again, can you ask GI how long before you should start to see improvement? My knowledge is limited with this but I think uceris is a more 'topical' steroid and, perhaps, your son would need prednisone which is more systemic?? But, as I said, I'm not the best person re steroids and how they work best.

Also ask about exclusive enteral nutrition. This is used to induce remission and has a comparable success rate as steroids (and can be used with any meds). It is a liquid diet of a nutritional formula. Usually the diet is 'exclusively' formula (enteral nutrition) for approx. 6 weeks. The formula provides all the necessary nutrition and is easily digested (so allows for bowel rest). I believe it has a higher success rate with crohns rather than UC,, however, since there's a question re his diagnosis... But, it's not an easy treatment to follow (ie no food - formula only) but there are no risks and may help if he is deficient in any vitamins/minerals. This treatment is used in most countries but, for some reason, seems to be less commonly used in the U.S. - so you may have to initiate the conversation, your GI may not mention it. (This was the treatment used to induce remission in my son when he was 16/17 and it worked very well for him.)

Here are links to a couple of threads about EN.

As far as a new GI, if you're not happy with your current one, then I think it makes sense to get a new doctor. But, is he moving to a new doctor in October anyway (because he's turning 18)?? If yes, I'd go with the transfer that is in place now as you may have to wait that long to see any new GI. My son was diagnosed at a pediatric hospital/GI but was also transferred to an adult GI when he turned 18.

Hope this helps.
Tess, mom to S
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
07-22-2014, 11:53 AM   #5
Forum Monitor
Maya142's Avatar
Hi and welcome!
My daughter (who is now 17, diagnosed at 16) also always has perfect blood work! The fact that he's not feeling well and has a fecal calprotectin of over 500, does make it sound like he's definitely not in remission.

In our experience, we have liked going to pediatric doctors, so I would definitely try to get a second opinion before he turns 18. Adult specialists tend to treat patients differently and don't always deal with teenagers well (my older daughter has seen an adult rheumatologist since she turned 18 - BIG mistake, I wish we had kept her pediatric for much longer!). But of course, it depends on your preference and the doctor. It really does sound you need a new GI!

My daughter has been on Entocort (a steroid like Uceris) and it really did help her. If it doesn't seem to be helping your son, maybe he needs prednisone. He may also need a different maintenance medication if 6MP appears to not be working and he has been on it for a while.

I hope your son starts feeling better soon!

Good luck!
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
07-22-2014, 12:21 PM   #6
Senior Member
Join Date: May 2014
Other than a slightly elevated CRP, my son's bloodwork was perfect when he was diagnosed. The fecal calprotectin was high. He had Crohn's inflammation and some ulceration in different locations on scopes. Based on my experience and so many others here, the labs don't always tell the full picture. (That was a surprise to our primary doctor.)

It sounds like your son's care has been less than ideal. It could be a good time to find a new doctor to take a fresh look. Maybe someone here would have a recommendation for a doctor close to you.

I hope you get some good answers soon and your son starts feeling better.
07-22-2014, 10:41 PM   #7
Join Date: Jul 2014
Location: Columbia, Maryland
Thanks everyone for taking the time to respond and share your thoughts. I really appreciate it! Going to call tomorrow to get an appt. with a different peds specialist. Keep you all posted.
07-24-2014, 12:57 AM   #8
Senior Member
Patricia56's Avatar
Join Date: Jul 2012
Location: Northern California, USA
First - here's a link to a Uceris savings program with copayments as low as $25

Whoever rxd the uceris must believe he has CD because that is budesonide which is a topical steroid used to induce remission in the small intestines. It can often be very effective and save the exposure to prednisone which has more significant systemic effects.

If he's been on the 6-MP for less than 3 months then you don't yet know if that drug will help get him into remission. It takes about that long to see results.

I agree that a 2nd opinion with another ped GI sounds like a good idea. Most ped gi's see patients into their 20's because teens are not adults (don't tell them I said so) and do not get good results when they switch to adult GI's as a general rule.There's even research showing that the medical outcomes are better when teens stay with ped GI until they're 21.

You are in an area where you have access to some of the best ped GI programs in the world. CHOP and Boston are two of them. So if you're going for a 2nd opinion I would try to take him to one of those.

Yes, bloodwork can be normal until they are very, very sick. My son was in the hospital for 10 days in January. 4 days before he was admitted all his labs were normal.

Severe fatigue is not normal and is NOT IBS for goodness sake. Could be depression but he has high FCP levels along with other symptoms which, when taken together, strongly suggest his symptoms are from uncontrolled CD.

I hope the uceris kicks in and helps him feel better soon. I also hope the savings plan is helpful so you can continue it until he gets a 2nd opinion.
Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.
07-24-2014, 01:04 AM   #9
Forum Monitor
Maya142's Avatar
Patricia56 - I think Uceris actually works in colon:
Entocort (which is also budesonide) works in the small bowel and is used for Crohn's.
07-26-2014, 08:10 AM   #10
Super Moderator
DustyKat's Avatar
Join Date: May 2010
Location: New South Wales, Australia
Hi marymoonlight and welcome to the forum.

I am so sorry to hear about your lad.

Did you manage to get an appointment with a new GI?

Dusty. xxx
Mum of 2 kids with Crohn's.

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