Think it is Crohns but Doctor thinks CFS...what do you think?

[superwoman]

Hi everyone - new here - found this forum whilst researching causes of abdominal pain. My 13 year old son has had severe pain for the last 5 weeks.

Been back and forth between doctor and hospital trying to find out the cause. Here is a list of his symptoms :-

Long Term
Lactose Intolerant mis diagnosed as IBS about 4 years ago
Allergic to cats
Allergic to pollen
Mild eczema
Allergic to just about anything put on his skin eg sun cream
Diaorrhea - even when avoiding lactose.

Recent
Severe ongoing pain in appendix area - worse after a BM and in the evening.
Sharp cramping colicky pain several times an hour
Mucus in stools (not looked before though)
Temperature constant at about 37.4c

Doctor convinced it's not appendicitis - the pain has been chronic and gone on too long apparently. Also convinced it is not kidneys - have had an ultrasound to rule that out. Convinced it is not Chrohns as no sign of it in the blood - no inflammation or infection. He tells me that the level of pain he is experiencing is too high and that the bowel would be about to perforate at that level of pain and therefore would show in blood tests.

His answer is that it is Chronic Fatigue Syndrome. Now I know my child and it is not that. He seems to have picked up that he is tired from not sleeping well (well wouldn't anyone be after 5 weeks of constant pain) and decided that he needs a course of Amytriptilene (Anti depressant).

Or the other cause is a virus...!

He doesn't want to do a CT scan or endoscopy as he is convinced they will show nothing and that we should go with the Amytriptilene. All this is based on the fact that the blood tests show nothing.

I am adamant that the pain is investigated more thoroughly than an ultrasound that couldn't find his terminal ileum or appendix and a few blood tests.

Has anyone else experienced this - blood tests that are fine but Chrohns diagnosed by a camera investigation?

Has anyone been told they just have CFS and told to take an antidepressant?

 

[Jeff D.]

Are ya'll seeing a GI. My pediatric doctor was convinced that I couldn't have Crohn's due to my age. I was diagnosed with Crohn's 6 months later.

It could be Crohn's but the only way to definitely know, especially since blood tests don't show much for a lot of us, is a colonoscopy and endoscopy with biopsies. Get him to a GI doctor or a different doctor and see what they say. This guy could be right but I have never heard of those symptoms before from CFS.

 

[superwoman]

We are in the Uk where we are treated on NHS. Dr refers you to a paediatric consultant at hospital and then he decides to refer on the GI specialist if he thinks necessary.

I can see I am going to have to insist!

 

[Jeff D.]

Can you go to another doctor? This one doesn't seem to be doing your son correctly.

 

[superwoman]

That would be difficult at this stage - would have to go private and pay. We have already paid of course through our National Insurance contributions so need to exhaust possibilities with this doctor before asking for 2nd opinion.

 

[Jeff D.]

Okay, best of luck. I hope your son gets treated real soon. I hope he doesn't have Crohn's but if he does then I hope he gets good treatment. Let him know that whenever he gets a pain or some problem to call the doc because now I'm on the verge of having to get an ostomy because I went years without telling my doc about some butt pain.

 

[soupdragon69]

Hi Superwoman,

Sorry to hear you are having such a tough time! ((hugs))

Has enough time lapsed for the report from the Paeds Cons to get to your GP? If so go to your GP and tell him/her how you feel if you think they are sympathic i.e. will listen to you and know you want more realistic listening and action taken!

If so ask them to refer you for a second opinion. If the GP wont do this then yes you can go private and an initial consultation should cost less than £100 if you could afford this. After that you should be able to revert to NHS care/treatment.

The NHS these days is all about patients CHOOSING where they want to be treated. Hopefully there is more than one paeds cons and more than one hospital in your area.

You know your child and as Jeff has already said the gold standard for confirming crohns is colonoscopy but it also has to be in the right area that they take the biopsy!

Dont give up. Keep plugging away. We will always listen to you here. There are many conditions unfortunately that have similar symptoms and you obviously need GI input!

Hang in there honey. Thinking of you all. ((hugs))

 

[NatalieMT]

SoupDragon always gives great advice, her and I are both in the UK so might understand how the NHS system works a little better. Although sometimes it's not so straight forward unfortunately! I can't really given an opinion on whether I think your son has Crohn's or not because it could be anything as so much goes on with the body. However I'm always willing to offer my support and suggestions.

If there is a sympathetic GP at your practice perhaps make an appointment and discuss a direct NHS gastro referral if they can do that? You could go private and from experience consultations are around £120. Often I have found seeing a consultant privately means they are a little more proactive and you sound like you need specialist input. You could also choose to get a second opinion from another paeds. consultant, you are perfectly entitled to do so. I have recently changed NHS gastros and now go to a completely different hospital where care is much better I find.

Let us know how you get on, praying that you find more help for your son and hopefully a solution to his problems.

A little about how things started for me. I am still a teenager too, although a few years older than your son. I was diagnosed with Crohn's a little before Christmas 2008. I had visited by doctor initially around June/July with almost constant watery bowel movements for about a month. Initially they thought IBS and gave me anti-spasmodic medication, unfortunately this didn't help and around October I began noticing blood with the bowel movements on a very regular basis, I was going 8 times a day at bad points. The pain at this point was also unbearable and I'm so sorry you and your son are going through the same now. I am on morphine which atleast makes me comfortable for the time being and controls the loose stools a little better. Blood tests for me weren't totally normal but nothing really majorly wrong showed up, but I don't think they should automatically rule out normal blood tests as not having Crohn's, especially when other symptoms such as fever and fatigue are present such as in this case. I was put on steroids and later became so ill I was admitted to hospital and had an emergency colonoscopy and was officially diagnosed following abnormal biopsies. I stayed for 2 weeks and was later put on medication targeted at the Crohn's, which have been partially successful up until this point. Always remember if your son gets really bad you can take him to the nearest A&E at any time. I did take Amitriptyline at one point, a very low dose just at night, but that was for chronic pain so unfortunately I don't know a lot about it as an anti-depressant.

 

[Guest1]

Has anyone else experienced this - blood tests that are fine but Chrohns diagnosed by a camera investigation?

Has anyone been told they just have CFS and told to take an antidepressant?

There are people on the board whose blood work has came back fine, but were diagnosed with Crohn's. I haven't been diagnosed with anything yet, however my appendix area hurts daily, I have watery stools, extreme fatigue, etc. and my blood work is perfect -- unfortunately, because of this my GI seems to think I have IBS or it's "stress". I've even had an abdominal/pelvic MRI come back normal. Tomorrow I have my barium enema and am praying whatever the cause may be will show up.

A good friend of mine with Crohn's went to see her GI years ago (before she was diagnosed), explained her symptoms to the doctor and he gave her an Rx for Zoloft claiming she was depressed. Unfortunately, there are a lot of doc's out there that brush these things off.

I hope that this doctor either pulls his head out of his rear and helps your son adequetly or you're able to see another specialist.

 

[superwoman]

Been back for follow up appointment today and doc has decided I am right he doesn't have Chronic Fatigue Syndrome - he has a 'disordered perception of pain' and has prescribed Amitriptylene.

However as a concession to my uncertainty he has agreed to arrange for a Barium X-Ray which will be done next week.

Will have to see if that shows anything.

 

[mharvey90]

The appendix area pain is just screaming out "crohn's disease!!!" This is where most crohn's patients have trouble because it is the terminal ileum where the small meets the large intestine. That is the area that I had a major obstruction in when I was 9 years old (10 years ago) that caused me to go without a real bowel movement for weeks. It later caused the need for surgery to get my terminal ileum removed, alone with my appendix, as it is connected. I also to this day get mucous in my stool, have chronic high fevers, and also have terrible skin problems, I have eczema and am allergic to anything that isn't fragrance/dye free! Good luck and the best of wishes to your son!

 

[D Bergy]

CFS is kind of a cope out diagnosis. It is basically a collection of symptoms without any clue what the actual disease is. Quite often it is Lyme Disease, but those symptoms do not even suggest that.

The doctor sounds like the kind to avoid. His diagnosis is bogus in my opinion. I would get a second opinion.

If I was the Doctor, I would suspect Celiac Sprue. You can eliminate Gluton from the diet and see if he improves. It will take a few weeks. It is very hard to eliminate Gluton since it is in most foods.

They also have blood tests for it.

Good Luck

Dan

 

[beth]

Sounds like the doctor is a jerk and a second opinion would probably be worthwhile even if you have to pay privately - having said that without a colonoscopy a diagnosis of Crohns would not be definitive.

Anyway, any progress?

 

[My Butt Hurts]

Hi Superwoman - good luck with your son and welcome to the forum!