Beyond frustration - 14 yo Son with Crohn's

[crohnsparent]

Thanks for reading. Here's the short version: Our 14-yo son was diagnosed with Crohn's Disease at age 11. Past two years have been really rough with him missing over 50 days of school each year. Multiple conversations with schools and endless teacher meetings. This year we decided to make a move from Pittsburgh to North Carolina for better weather thinking it would help his mood with more sunny days. Now it's high school. He's missed 10 of first 12 days of school and is sick EVERY morning. Over the past year he's been taking Asacol and Celexa mainly and every time we think it's the Crohn's he has another endoscopy and it comes up negative. Labs are good and his new doctor thinks it's more irritable bowel and not the Crohn's flaring. She wants to increase Asacol to 3x daily.

My wife and I are at our absolute wits end. We just can't seem to find anything that helps him on a regular basis. We discussed home schooling but he really wants to maintain the social aspects of school and we can't see him just sleeping in every day and becoming depressed. I'm a physician myself (Anesthesiologist) and can't bare to see him suffer like this. i feel like I can't do anything to help him. Thought someone might be able to relate and maybe give some insight. Does this story ring a bell with anyone? Where should we turn...diet? pills? counseling? Should we be doing more to help him? I want these to be great years for him. He's a smart kid with great personality and I hate to see his education and social life suffering so much. It pains me to see him ill.

 

[muppet]

Endoscopy or colonoscopy? Even a clean scope doesn't rule out the Crohn's being the problem. He could have lots of small bowel involvement that's harder to see. Has he had any other imaging done? Barium swallow?

You need to keep on the doctors and ask lots of questions and get acceptable answers and most of all a PLAN. Don't be afraid to doctor shop if that's what you have to do in order to find a specialist who is proactive and includes you in your son's treatment.

Counseling helps some kids and for others I think it's actually detrimental, but that's just my dumb opinion. As a teenage boy I never appreciated being forced to attend counseling sessions both for Crohn's and my parents' divorce and still at 34 I feel I had no benefit, just a lot of shame on the days I had to go and try not to be seen by anybody I knew... Anyway that's a tangent.

If they're not seeing anything in the large bowel on scopes (assuming you meant colonoscopy and not endoscopy), then why are they using Asacol? Asacol is colon specific, in fact I think it might even be descending colon specific. He might be getting no benefit at all from that and might instead need to be on asulfizine or 6mp/Imuran.

Labs are incredibly misleading with Crohn's as well, assuming that's what he has. Good labs can be accompanied by terrible symptoms and vice versa. Why this is, I'm not sure, but I suspect that blood indicators either lag or precede inflammation, sometimes by quite an interval. That's just my pet theory after nearly 30 years of dealing with this stuff.

Good luck to you guys. There is a wealth of information here. Stick around and READ.

 

[crohnsparent]

Muppet - I appreciate your openness and perspective. Challenging right now as I am still in Pittsburgh and my wife has been dealing with this herself for the last month and we will be apart until I finish my residency in early October. I tend to trust the GI specialists and we finally found someone in NC who seemed both proactive and knowledgable. He was on 6-mp for a while and it got D/C last year after a prolonged period of sub-therapeutic levels and no pain. He's never really gone a steady period pain-free in my opinion. Wife was just sobbing this morning after the doctor apt so she may have gotten endo/colonostopy mixed up - I'll ask her. I plan to stay on here to learn as much as I can. We get some of this on our boards and in Med school but it doesn't really hit home until it hits home. I really want to optimize his care and I feel it has been neglected and sub-par for quite some time now.

 

[crohnsparent]

Muppet - Regarding the counseling and support, we encourage him to go to Crohn's camp, etc to get involved with people who can relate to him but he's not interested. We don't push it too much but I do think it would help if he had someone to call on who could empathize. I appreciated your perspective on this. Glad we haven't pushed too hard.

 

[muppet]

"Sub therapeutic level" is open for debate, just so you know. The Prometheus test is fairly new and doctors are still learning how to properly interpret it.

Luckily for you, you almost certainly have full journal access. I have to make-do with abstracts most of the time. Self directed, self motivated research is key in this disease. You need to speak the same language as the GI and you have to know what he may or may not be telling you.

 

[muppet]

Also you mentioned diet. A low residue diet can work quite well, and there are many other theories out there. My daughter and I will be attempting the Specific Carbohydrate Diet forwarded by Gotschall pretty soon. We were delayed in our prep by hurricane Irene and some other family type stuff.

There are some common irritants that are universal for almost all Crohn's sufferers, though:

peanuts
popcorn
spicy foods
dairy
beef

These are all the heavy hitters, which isn't to say they'll have the worst effect on your son, just that they seem to be reported as a problem by the most people.

Personally, I'm torn to bits by sun dried tomatoes. My daughter can't bear to eat apples. It ranges all over.

 

[dannysmom]

I can relate to your frustration. My son Danny is 14 now and has been sick since he was 11. He does not have a definite Crohn's diagnosis though, and we have not found anything that helps him. Never-ending fatigue is Danny's worst symptom (followed by headache, abdominal pain, and daily/nightly diarrhea). He has been receiving home instruction from the school district for over 2 years now. They are very supportive but it does take doctor letters and pushing. You should be able to get a shortened day if you think that will help. Maybe just 2-3 classes in school and 2 tutors at home. Danny tried this last year but then he declined. This year he is having 5 tutors at home, and the school encouraged him to try a club - which usually meets after school once a week. If he starts to feel better, he will be able to go to 1 or 2 classes and lunch too if he wants. The school seems to understand the importance of socializing.

What symptoms does your son have? Has he been given any streroids?

I admire you for moving to a seemingly better climate. We've thought of the same thing at times.

 

[Tesscorm]

How upsetting and frustrating for you and your family! I have very limited experience with Crohn's but hope you find a solution for your son quickly.

My son, 17 years, was diagosed in the spring. He was put on a enteral diet (formula only for six weeks). He ingested the formula overnight through an NG tube (removing the tube each morning). Following the six week period, he was allowed to gradually reintroduce all foods but continue with the formula on a maintenance treatment (1/2 dosage, 5 nights per week). My understanding is that this treatment is much more common in Europe than in NA (there are drinkable formulas available in the US, not in Canada). In treating Crohn's, studies have shown that it induces remission at a comparable rate as steroids. His only medication, thus far, is Nexium. There are no side effects from the formula (Tolerex). My son has responded well to this treatment. He has had some sporadic symptoms but they have been very short-lived and minor.

I don't know if this can possibly help your son but wanted to pass it along, just in case.

As far as counseling, our local hospital has teen IBD group counseling, info sessions, etc. and my son has had no interest... For now, I think he prefers to deal with it at his own pace, when/if the need arises... so I also haven't pushed him to attend.

Good luck!

 

[Lydia]

Maybe its time to try immunosuppressants like imuran or 6MP. Some people have had success with LDN. Asacol is more for minor flares. Its sounds like you need a second opinion regarding the direction of his treatment.

There are lots of different diets that may help.

gluten-free
SCD
GAPS
and the paleo diet

are a few.

 

[xoxava]

Where in nc are you guys?

 

[DustyKat]

Where was your son's Crohns located when he was diagnosed?

When you say he is sick every morning exactly what are his symptoms?

Is he experiencing any extra intestional manifestations as well?

Has he had bloods done for B12, Folate, Iron Stores and Vit D?

Sorry for all the questions!

Dusty. xxx

 

[Dexky]

Compared to most crohn's meds, Asacol is fairly benign with fewer possible side effects. I agree with your GI. Since bloodworks look ok, even though there are many who will attest to false results, I'd at least give the extra Asacol a go before moving on. Asacol is usually prescribed 2400mg/day divided by 3 anyway. I think it's a little unusual that his pain is worse at a particular time of day.

I assume there's no chance he's being unduly teased at school. Being a new kid there anyway, maybe there's some stress in that situation causing him to get anxious in the mornings and upsetting his crohns???

 

[dannysmom]

Danny feels worse in the morning too. He is up a couple of times each night with D (anwhere from 2AM to 6AM). We always try to let him sleep as long as he can.

 

[Tesscorm]

Re being sick in the morning...

I read a post a little while back where someone's child was often sick in the evening and another member commented that it could be when the earlier dosage of medication was wearing out.

Could that be the case here? Perhaps the medication given the evening before has lost its impact by morning?

 

[crohnsparent]

Hi - I'm Laurie - Josh's wife. I'm going to attempt to answer some of your questions here. This forum is proving incredibly helpful - wish I had made time to do more foruming over the years! In the beginning, I was a typical crazy-mom trying to learn it all and do it all. Thankfully, time has provided us with many answers regarding Noah's symptoms. He knows now what to avoid in his diet - popcorn, fried food, dairy (though this is a trick, since he's crazy about cheese).

Noah was on 6-mp after a 6 month stint of prednisone - whose effects left him with a 40 lb. weight gain and a fractured leg. The weight came off, and he was placed on 6-mp. 6-mp for 3 years - then last summer, after a bout of obstinance/puberty when he was missing his medicine 2-4 times a week, the docs ran a bllod test and determined that the 6-mp levels in his blood weren't enough to be benefitting him in any way. We made the decision to stop 6-mp because his symptoms were the same (if not improved). Re-occurring viruses, infections, and even a case of shingles caused by the low immunity were another deciding factor.

Enter asacol. I can say that Noah seems more affected by the change in seasons, his stress levels, and some other enigmatic factors (of which we are yet to identify) than the medications alone. He's tried bentyl, levsin, and other drugs designed to alleviate his pain. He's described his pain with these adjectives in the past: gradual, slow, sharp, bubbly, all-over. He's had bouts of reflux, horrible gas, and lethargy. When he gets a cold, a flu, a strep throat, he gets it BAD. He takes 1-2 extra weeks to recover than my other boys.

His pain has always been worse in the mornings. He wakes up around 5-6 AM to take his meds and attmept school and has to sleep it off until around 11. He uses heating pads and hot water bottles when his cramping is substantive.

WHY am I so frustrated? WHY am I angry now? Sad? Hurting? Because I keep hearing the same thing over and over again. Blood work is normal. Scope is normal (he goes for both scopes again this Thursday - another $1800 out of pocket to boot that I'm CERTAIN will deliver the same results). So I ask our new doctor - who is wonderful in all other ways - what if everything is normal - that you determine this is not "crohn's related" but an "IBD related" pain? Her response, in her sweet southern drawl, "That's when I get a little mean - and I say: Go to school."

I'M SORRY THIS ISN'T GOOD ENOUGH FOR ME!! You watch your child day-in and day-out trying to live a normal life - depressed because he can't! And waking up in a fetal position becuase his pain is so bad - and you tell me your best advice is "TOUGHEN UP!!!" Noah is a handsome - confident- talented - clever - well adjusted kid - he's got life on a silver platter - if it weren't for this ONE thing, this ONE thing that has been so detrimental, so devastating, so heartbreaking for me, his mother.

Btw - there is no teasing going on either (though the prednisone moonface prompted some problems back in 6th grade) - try teasing a 14 yo who's 6'5" and has the confidence of George Clooney. Is there some work related stress? Sure, but not anymore than any other kid. He adapts to any situation, and he wanted to make this move. The external social factors, in other words, aren't a factor.

I'm sorry to vent. I hit the ceiling this week. I don't know what to do. Maybe just lower my expectations.

 

[muppet]

It sounds like 6mp was working for you except for compliance and the immune side effects. I'd urge you not to rule it out as a therapy in the future if you're not getting good results from the ASA.

If he needs pain management then his Crohn's is not controlled, in my opinion. Neither I nor my daughter are on pain meds and we've both got pretty severe cases of Crohn's, though not as severe as others. There's always somebody worse.

 

[muppet]

If your doctor is telling you to toughen up, find a new doctor immediately. I'm SO not joking about this.

 

[crohnsparent]

Noah was also part of a Psychology based wellness group. But he HATED it. Absolutely hated it. Do I believe in its merits? It's promises? Absolutely. But I am not HIM. He must embrace those aspects of illness. And I don't believe that modern psychology is the only pathway there, either. SO why do they push it like it's going to work for everybody? Drives me nuts. It's nearly dogmatic - our last group in Pittsburgh had me threatening him with punishments to attend counseling. I look back now, and I feel like a dolt. But I was trying to do my best for him.

 

[crohnsparent]

muppet - this has been more than one doctor in our experience - is this just within the realm of pediatric gastro because they're trying to get these kids to school? I don't understand it.

 

[muppet]

There are a lot of dud specialists out there, and a lot of docs with an agenda to push and further their own research projects--which they are in receipt of grants for. We left our specialist group in Hartford for that reason.

Boston has been a haven for us but I still see the influence of the academic "game" going on there as well.

Don't be afraid to shop for a new practice if yours isn't a good fit for your son. There's no time to waste on bad or incompatible doctors.

 

[muppet]

muppet - this has been more than one doctor in our experience - is this just within the realm of pediatric gastro because they're trying to get these kids to school? I don't understand it.

Well, I think that part of the problem might be that a lot of Crohn's patients DO need to toughen up, suck it up, and learn to accept that their disease is sometimes painful and that is part of their life. Harsh, but true.

That said, I don't think your doctor, who sees you twice a year, is the guy to be the arbiter of that.

I do think that normalizing the kid's life ASAP is key in his recovery and maintained remission, even if there's some discomfort to endure in the process. It's highly variable depending on the kid's personality and tolerances, though.

I'm not sure I'm being any help at all, here. This is very difficult to quantify.

 

[crohnsparent]

The Crohn's is not controlled, I don't believe it either. But when you're being told that it might be IBD - what are the means to control it? But there was no significant difference in symptoms once off of 6-mp, except he wasn't picking up every other virus in the world.

 

[muppet]

I'm not sure about the diagnosis uncertainty. Where was the inflammation when Crohn's was diagnosed? How was Crohn's diagnosed? How was it confirmed?

The fact that his symptoms were similar on and off 6-MP and with a potentially lower-than-therapeutic dose isn't necessarily an indicator of anything at all. Bear this in mind. It could be coincidental with a remission and he could have been "coasting" on a 6MP maintained remission even after his dose became sub-therapeutic.

 

[dannysmom]

I share your frustration and we do not stay with doctors that simply think it is either Crohn's or you just need to push yourself! Is is VERY hard to find very good doctors. My son is also very smart, funny, etc. ... loved school when he was well. The school should be more accommodating with the hours if that helps. We had "school phobia" thrown at us early on. To help prove this incorrect, we took Danny to a psychiatrist that provided us a letter saying that he did not believe Danny's condition to be of any psychiatric origin.

 

[Dexky]

His pain has always been worse in the mornings. He wakes up around 5-6 AM to take his meds and attmept school and has to sleep it off until around 11. He uses heating pads and hot water bottles when his cramping is substantive.

I can certainly feel your frustration Laurie and Josh. I didn't mean to imply that his pain was all in his head but I do believe that stress is a huge factor in the well-being of a chronie.

I agree with Muppet. If he is in severe pain, requiring that much medication^^^, his crohns is not being controlled.

Has he had any small bowel imaging, where the scopes can't reach??

 

[crohnsparent]

Josh here - Tomorrow Noah is having both an endoscopy and colonoscopy done. This scenario is almost a verbatum repeat of last year. Both studies came back normal and the existing treatment plan was supported by the opinion of "see we are taking care of the Crohn's appropriately...must be IBD" and left like that. I find us almost 'wishing' something would come up just for diagnostic purposes so we could know what to gear treatment toward. I guess my wife and I are looking for the attitude of "We may not know what is causing the pain but we will keep trying until we find out" and reality is...we just may not find this. We keep praying (and sometimes expecting) his pain to resolve with some treatment and live what we invision as a 'normal' teenage and adult life. Whole thing is hard to accept. We both appreciate everyone's thoughts. I am thankful we can share experiences together and relate to one another. That, alone, is therapy.

 

[muppet]

I know I'm sort of a one-note horn about this, but I would be looking at a new specialist if I were you. If he's in pain, they're missing something.

I'm sorry if this has already been answered, but has he done a barium swallow and small bowel series?

I'm still not clear on how they diagnosed CD in the first place without visible inflammation?

It seems like you don't want to get into details or you're just too worn out to notice all the questions in this thread. I can relate to that, but we're just trying to help...

 

[Miss Underestimated]

I don't know if my experience will help, but Asacol and similar medications cause a reaction for me - it was all my Crohn's symptoms x 10. They put me on Entocort instead while they did more diagnostic tests.

After more than 20 years of undiagnosed Crohn's - forget psychology until he is properly diagnosed. That is what doctors tell you when they don't know the answer. NC does have homebound teachers who will come to him and use internet.

 

[muppet]

I thought about ASA reactions too but honestly I'd expect that to show up on a scope. Asacol/Colazal shouldn't even be deploying in the small bowel.

 

[Emily]

hey,
I'm not sure if this is what you are looking for, but i'm 19 and live in pittsburgh and OMG, the UPMC GI team is incredible. I'm so sorry you moved away I really truly feel that they have done anything and everything to help me, and have done it right! I've had Crohn's since age 7, so trust me, I can relate to the adolescent + Crohn's problems your son is having... I highly recommend the GI team at UPMC Presby.
Changed my life.

 

[Emily]

ps. Completely in agreement with missunderestimated and everyone saying to forget psychology until he has a real diagnosis. My parents put me through that miserable "therapy" crap when I was little and I resented it because felt that nobody was taking my true physical pain seriously. I stop being depressed when I finally was in remission. Your main goal should be getting him in the hands of a physician that takes his symptoms seriously and will do whatever it takes to get to the bottom of it. see above post
just my 2 cents, sorry for the mini rant.

 

[dannysmom]

"see we are taking care of the Crohn's appropriately...must be IBD" and left like that.

Did you mean IBS in the quote above? It is usually an IBS dx where doctors try to just push the patient to be more functional without providing any helpful treatment. (We have found that too.)

 

[happy]

Crohnsparent,
I understand what you are going through, both my son and I have been there, although neither of us has been formally diagnosed with a specific type of IBD. My son had nodular lymphoid hyperplasia with bleeding, diarrhea, pain, anorexia, joint swelling and fatigue. He was ill for three years and has been well for eight years. I became ill with IBD-like symptoms 18 months ago. I have had a positive scope with twenty-thirty ulcers in my small bowel. After a recent setback in July, I have been doing well for about six weeks on a full elimination diet following two weeks of a liquid enteral diet. (I was on enteral nutrition for four months early in the year). My husband is a health professional as well, and our well-meaning friends were our doctors, as we live in a small community.

First of all, take a few breaths. Your son needs you to be calm and rational even if you are feeling things are out of control. Do continue to consult whatever doctors you trust and that you feel are giving you good advice. But trust what your son tells you, what you know about him and what your own instincts tell you about the situation. Then arm yourself with research, lots of good research. If your son’s recent tests don’t allow a diagnosis and plan to be made, understand that sometimes, contrary to what is often taught in medical school, there is no definitive diagnosis and no curative treatments for some very difficult digestive problems, at present. Have a cry when you really realize the truth of this.

Then (with your son) decide from the research that you have done what path you would like to pursue, what realistic success would look like and how long you will pursue this path before choosing another if there are no results. Share this plan with your son’s doctors. In a rational way explain why you want to pursue the path and keep them updated about your son’s progress. Get them to help you. From my experience many doctors tune out when they can’t explain why something isn’t working and if you are either crying or ranting they find it easier to decide that you need psychological treatment only.

Decide with your son what is most important to him: pain relief, relief of constipation or diarrhea, weight loss or weight gain, return to a normal routine, being able to keep up with a particular class, an extracurricular activity, etc.? Tell him what is most important to you: if you decide on a plan together, he sticks with it for x amount of time, he eats a certain number of calories per day, he sticks with his meds with no nagging etc. Then put the plan in motion. Along the way hopefully your son will know that you are trying to help him, he will learn what he needs to do to best help himself, and the doctors will learn to respect you and your son and jump in to help when you need them.

My suggestion, as Tesscorm suggested-- a full liquid diet with enteral nutrition. I used VivonexPlus as I have many food sensitivities, but there are many other brands. There is a website from Britain by one of the doctors that uses this treatment more commonly: http://www.crohns.org.uk (His book is good.) I also have some articles that discuss the research. PM me if you want them. It is older (90’s) because most research now is on the meds rather than nutrition. Another good resource for this is the book “Beat Crohn's! Getting to Remission with Enteral Nutrition” by Margaret A. Oppenheimer. This book is surprisingly well-researched with good documentation and good tips for dealing with problems encountered with enteral nutrition.

May the healing journey for your son soon begin.

 

[crohnsparent]

Laurie here:

Muppet - Noah's diagnosis was "textbook" Crohns at age 11. His entire bowel, from large to small was inflamed to the point they couldn't scope past the ileum. He's had the barium test and small bowel tests also. His diagnosis is not the question. How to manage it is. We've been told that he falls within that "10-20%" of Crohns patients who will experience IBD symptoms. I think I addressed all of your questions? Im on my iPhone so it's hard to double check.

 

[muppet]

Sorry I didn't intend to sound annoyed. I'm having my own Crohn's flare right now.

Honestly I'm not clear on how your doctors are delineating Crohn's and IBD. Until you said your doctors said it, I would have considered it entirely nonsensical to say "You have Crohn's and IBD". To me Crohn's is a superset of IBD. In my experience when the disease is under control, the pain is also managed without painkillers, but it's possible that's not everyone's experience.

It seems to me though that if scopes are clean then the Asacol is not enough by itself. It may be keeping his large bowel "clean" but the small bowel is not treated at all by Asacol. He may have to combine it with 6MP/Imuran or maybe Remicade (though Remicade is a scary one.) Asacol is a time release pill that targets the colon only.

Celexa is something I wouldn't even be bothering with until the Crohn's is under control unless Noah is having major problems. I would be worried about not necessarily drug interactions but peripheral effects that might complicate Crohn's therapy. In remission the Celexa might not be needed? But I'm out on a limb here as I don't know much about your son so take this portion of my advice with a big grain of salt.

I hope I'm not aggravating you with too much commentary... I really do wish you well with your son.

 

[crohnsparent]

Happy - thank you for your response. If I've come off as a raving lunatic on here, forgive. I'm actually as sedate a parent in the face of difficulty that any kid might desire. I'm just looking outside the box of doctors for some commonality, some insight now. As far as researching a plan and sticking to it - pain is public enemy one. And managing pain is an open ended double-edged sword isn't it? Noah has been researching this himself for some time. And for the past year he's been fueled by online testimonials of Crohns patients that pot is the answer. Much to our chagrin of course. Managed by a doc as an adult in a state where it's legal? Possibly. So what other options are on the table? We're still taking a wack at all sorts of stuff. But a liquid diet is out of the question right now. He's a 14 yo boy - and no amount of good sense, research, and coaxing is going to help that argument. If it were me - I'd try it! But so much of this must unfold in his due course. We are doing are best to equip ourselves, so anyone and everyone's experience is welcome!

 

[Emily]

IBD = Inflammatory Bowel Disease = Crohn's Disease + Ulcerative Colitis
IBS = Irritable Bowel Syndrome

Irritable Bowel Syndrome is not really inflammation, it's like "a weak stomach". I think i've read like 50% of people claim to have it. It's entirely different than Crohn's which is chronic inflammation of the digestive tract. Bleh. People mix them up alot. They are very different, so say that "he falls within that "10-20%" of Crohns patients who will experience IBD symptoms" doesn't really make sense since all Crohn's patients ARE IBD patients..I think what we are trying to say here is that the doctors are making it unclear which one he appears to have...

 

[crohnsparent]

Well, the cylexa was prescribed to him at age 12, he was depressed and suicidal for a jaunt and we were told that the drug also has a pain-relieving effect. He's done well on that I'm fairly sure. Depression runs in my family to boot. I won't do 6-mp again though - he was more sick with it. Asacol may not be right, but the dosage was just increased so we're going to stick with it a bit. I hope you start feeling better d
soon.

 

[crohnsparent]

No emr - they are very clear as to what he has. From day one that has not been in doubt. His scope pics are blood red. The inflammation was horrid looking. What they're differentiating is that he falls within a subset that experiences the traditional symptoms of IBD nomenclature. This was a longitudinal study - I asked to see it. So where we wouldn't necessarily delineate symptoms - they are. And it's true - Noah rarely has bloody stools, frequent, persistent diarhea, trouble with high fiber - things associated with Crohns. But there you have it - his diagnosis was confirmed by 3 surgeons.

 

[Dexky]

Josh here - Tomorrow Noah is having both an endoscopy and colonoscopy done.

That's today right?? It can be easy to lose important events in these threads! Let us know how it goes Josh! I know it's tough! You hope there's nothing there and yet you want a reason for his suffering too. Good luck!!

 

[muppet]

With regards to the cannabis stuff, there are lots of testimonials and there's a forum here dedicated to it, but in my opinion there's so much political agenda surrounding the use of cannabis as medicine that non-physician proponents tend to exaggerate the effectiveness of cannabis as a treatment for X.

I wish you good luck with the treatments you're sticking with but I really do want you to be clear that Asacol does not treat the small bowel at all. You said that your son was diagnosed with inflammation throughout his entire bowel. Inflammation in his small bowel may or may not show up on a small bowel series and could be causing his persistent pain--and Asacol will not treat inflammation there at all. It's not a systemic drug.

I understand your issues with 6MP. What specifically happened with Noah on 6MP? My daughter Sarah had big problems with it but there's things you can do to make it work.

 

[Jane]

Asacol never worked for me

Your story sounds very frustrating.

A few thoughts. Asacol never worked for me (I was diagnosed as an adult). And the research has shown it is not very effective for Crohn's disease.
See the following
http://www.ccfa.org/reuters/5ASAs

If you want to look for another doctor/get a second opinion, the CCFA had a women pediatric gastrolenterologist - Dr. Sandra Kim from UNC Chapel Hill on one of their educational webcasts. I found her personality over the webcast to be warm and she seemed to know her stuff. The webcast can be found at:
http://www.ccfa.org/info/webcasts/?LMI=5.5

Finally I tried enteral nutrition for 2 weeks. It didn't cure my Crohn's but it did help me. I recommend the book Beat Crohn's into Remission with Enteral Nutrition by Margaret Oppenheimer. The cover of the book has a goofy cartoon drawing, but the information in the book is based on and cites medical journal articles.

Mornings are always worse for me as well. I don't have any suggestions. : (

Good luck!

 

[notfullyfathomed]

I just stumbled upon a reference to abdominal migraines, and they made me think about what you are going through with your son. I'm not sure if it is a diagnosis that a gastroenterologist would give at all, let alone to a patient they have already diagnosed with Crohn's. But, if the scopes and scans don't show any active inflammation then it is something to look into.

One study that I read mentioned the link between the gut and the central nervous system -- both are made from the same embyonic tissue. Stress activates the CNS, and the manifestations are in the gut with pain, nausea, and vomiting. Seems like this might be loosely applicable to Crohn's too?