What advice can you give?

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concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 3/27/2010 1:59 PM (GMT -7)   
Haven't posted on here for awhile since for the most part my son has been doing OK the last couple years after getting put on Remicade. He was diagnosed around 4 years ago after we realizied he wasn't feeling well , no weight gain,and his growth had drastically slowed down even though he was only 14. He has in the last couple years quit hanging out with friends, become a homebody and has become very argumentive with both parents and siblings. He is very intelligent and has researched the disease and thinks he can diagnose everything associated with the disease. Fast forward to the last year and I have been never been 100 % on board with his doctor who treats pediatric patients and now he is 18 .She seems to just treat the disease and hope everything works like it does for other patients. But around 8 months ago it seemed to me the Remicade, after doing wonders for over 2 years, wasn't working as well so she first increased the dosage amount then the frequency.Then last month he started having a lot of pain and she put him on endocort and did some blood tests and her thought then was maybe a switchover to Humira. Now last week he develops a pain when he urinates and went to regular doctor who thought he had urinary tract infection or kidney stones. Got some medcine which didn't help went back and after a visit to urologist they think inflamation is pushing against bladder now . So after having an MRI on Thursday Crohn's doctor is prescribing a colonostopy and possible surgery to follow without trying Humira first. Now son says there is no way he will have colonostopy or surgery and whatever happens ,happens and since he is 18 we can't do anything. Does anybody know what are the reprocussions if he doesn't have surgery if the inflammation is as bad as doctor thinks?

Post Edited (concernedparent) : 3/27/2010 6:15:30 PM (GMT-6)


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 3/27/2010 2:35 PM (GMT -7)   
Why doctors do not give the option of the pill camera I do not know. Granted I would think a patency caspule might be a good idea if the inflimation is really bad.  But there are also other medication options here.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


AzJohnny
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Date Joined Sep 2006
Total Posts : 171
   Posted 3/27/2010 6:00 PM (GMT -7)   
Hi concernedparernt, I'm sorry you have to go through this. I can remember being young and stupid and thinking I new everything. We usually pay for such stupidity in some way. Your son will probably get worse if he doesn't follow docs orders. If the pain and D get bad enough, he'll start doing it. Since he's 18, shouldn't he be looking for an adult GI? Maybe if you suggest that he start "interviewing" adult GI s he'll find one that he will listen to.

Since he's on Remicade, it's very important that he continue getting his blood tests. If it were me, I would be most concerned about him continuing to be monitored for potential side effects and reactions to the Remicade. Other than that I wouldn't worry too much, if the D and/or pain get bad enough, he'll do whatever it takes to bring it under control.

It can be a frightening time when children insist on claiming their right to make there own decisions (and mistakes). I hope it turns out well, please let us know how it goes.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


vixen
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Date Joined Jan 2010
Total Posts : 794
   Posted 3/28/2010 2:25 AM (GMT -7)   
Hello.
Can't give you any advice and like you have indicated once a child reaches 18 there is very little that you can do :( I guess (if he will listen at all) is to say that if it was you, you would probably go about it this way.........!! Outwardly he may show no signs of agreeing but he may go away and reflect some more! Unfortunately he may decide to carry on his own sweet way until things do become unbearable :(
I think that maybe I could be facing this type of scenario another year down the line(at moment son is soooo compliant about everything and questions nothing(maybe just as frustrating?!)) Why can't they have a balanced approach?
Hope everything turns out right in the end

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/28/2010 7:35 AM (GMT -7)   
I agree I am pretty sure the disease will take the choice away from him. As painful as this is for you Mom, he is going to have to learn the hard way. I was diagnosed at 18 and am now 52, so its been almost 35 years of me living with this disease. After my first two flares, I decided I didn't need to take meds and I could do it the way I wanted. I ended up having emergency surgery for a complete obstruction. Mine took almost 20 years to happen, but I really think with your son being in the condition he is in, its going to happen sooner for him. I was at least in remission when my stubbornness hit. Will he at least go on to the Humira? If so, let him try it. It might do the trick, it might not. If it doesn't as said above, the disease will make the decision for him. Hugs and I am so sorry for your worry. Good luck to you both!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 3/28/2010 7:58 AM (GMT -7)   
Part of the reason he is being stubborn besides knowing how bad the prep work is for colonostopy is that he knows that if they say he needs surgery he has read where half the people get it back and he doesn't like those odds. He wants to get on Humira and see what it does before he has surgery also, but I don't think he has that choice. He is also in his senior year of high school and needs to keep up his grades for last semester and having surgery he would be out for awhile and since he was waitlisted for his favorite college( North Carolina)  and they will need those grades to make final decision.Is it OK for other members on this site to recommend doctors or hospitals that they have used ,because I believe he should also be going to a adult doctor now for Crohn's . And thank you as always for your help and support.

Post Edited (concernedparent) : 3/28/2010 9:13:58 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/28/2010 8:13 AM (GMT -7)   
Yes others can recommend a doctor to you. Just let us know what area you are living in.
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 3/28/2010 8:15 AM (GMT -7)   
We live in the northwest suburbs of Chicago,and if all goes well he will need a new doctor when he goes to college in the fall either at the University of Iowa or the University of North Carolina.

sissy22
Regular Member


Date Joined Mar 2010
Total Posts : 23
   Posted 3/28/2010 8:38 AM (GMT -7)   
As a teenager I think I can offer some advice:) My mom has gone to every single doctors appt with me since I was diagnosed at 14. Sometimes when she tries to give me advice I feel like she has no idea what shes talking about and she has no idea what I am going through. I think the best thing you can do for your son is to sit down with him and tell him how worried you are about his health. Tell him that he is still very young and even though he can still legally make his own decisions, you should still have an input because you are his mother.

I have had this conversation with my mom and even though I argued with her to her face, I still though about what she said.

Hope it helps:/

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 3/28/2010 10:36 AM (GMT -7)   
sissy has awesome advice. I think that's the way to go.

Also, i agree with the others, at some point if the disease progresses, he will likely start getting obstructions and will have no choice but surgery.

Mind you, I had surgery for obstructions and crohn's that didn't respond well to meds and the surgery did not stop the cd. New cd started almost immediately after my resection. The surgery helped the obstructions but not the actual disease.

Surgery should be the absolute last resort or because of emergency. It should not be used as treatment because shortening the intestines is never a good idea. But in emergency or very serious disease, the pros outweigh the cons.

I still have partial obstructions but I will not shorten my bowels further unless its an emergency or I have no other option.

If your son has other options he should try them, and he should also take drastic measures with his diet and try the Maker's Diet or SCD at least during bad flares.

I truly believe one of the reasons I have avoided surgery over the last couple of years is because I have modified my diet to one that is easily digested and healing during bad flares especially.

Regardless, if your son loves you and lives with you, he should seriously consider your advice. Sit him down and in a non-lecture way lecture him. lol ;-)

Best wishes.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 3/28/2010 11:14 AM (GMT -7)   
But also please do not be hurt if he nicely tells ya to back off and not tell him what to do. It might be better to ask "how can I help support you?" That way you acknowledge his independence and yet still let him know he has a soft place to fall.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 3/28/2010 11:28 AM (GMT -7)   
Totally agree with you on that Navy..learning thru experience of a 17 almost 18 yr old daughter Cait has UC BUT NOW DOC wants her to be having the full monty of tests to check for CD..I ask how shes feeling about things and stuff like that letting her know she has my total support..lyn
..Co Moderator for Crohns...Anxiety/Panic......Alzheimers

DX..Crohns,,,A/P...Fibro...Seizures..Neuropathy...Pyoderma Gangrenosum..Deaf

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Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 3/28/2010 2:47 PM (GMT -7)   
I just wanted to point out to you one thing that you said your son says to you about not wanting surgery. 50% of the time it comes back. Well that would mean that 50% of the time it DOESN'T COME BACK. And he has it right now, clearly by his symptoms, so really what does he have to lose by agreeing to testing.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


medchrt1
Veteran Member


Date Joined Sep 2005
Total Posts : 517
   Posted 3/28/2010 3:41 PM (GMT -7)   
to whom is the advice being given. from us to you to him. from us to you for you. from us to you for him.
If he doesnt get scoped the doctor doesnt know the extent of disease (to a point see below)...

What did the blood test show? as that was a start.

Repercussion is speculation only. If he has narrowing, if there is perforation, if there is surgery.
Since perforation is not very high in crohns... rather it is the complications from crohns that tend to lead to surgery.
Insistence on not having a colonoscopy would require an alternative test to see the extent and area of disease.
Such tests can be small bowel follow through, barium xrays, MRI, pill cam, etc.
as way to avoid being scoped. But any doctor would want the more direct view to see if there are problem area by the direct use of a scope.
So he had the MRI and your information on the result is lacking in your post.

As far as the medication change, the doctor wants to know the extent of inflammation in order to have at least some basis for the a selected medication
as the blood test itself may not be enough. So the question becomes on what characteristic (results) of the MRI has the medication been selected. need the results of the MRI, what were the results?

Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 3/28/2010 3:54 PM (GMT -7)   
You have one of the best GI doctors in the USA at your doorstep at the University of Chicago Medical Center. His name is Dr. Stephen Hanauer.
But I agree with medchrt1 as the doctor needs to see whats going on before they start switching meds around as it could be more serious.
I wish you and your son all the best.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications:Humira,  Asacol, FolicAcid,  Multivitamin, 1000mg Calcium, Vitamin D, Probiotics, Pepcid Complete, Questran,  Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Julia Hill
Veteran Member


Date Joined Mar 2008
Total Posts : 543
   Posted 3/28/2010 4:16 PM (GMT -7)   
Maybe your son will develop a repore (sp) with a new doctor and want to take his advise. If your current GI thinks surgery is a better option then Humira, it could be becasue it takes sometime for the meds to work. I also agree that as much as we all dislike the lovely tests we are put through, they really are necessary and I hope your son comes to terms with that sooner rather then later. As a parent this certainly puts you in a worrisome situation. Hang in there he will come around.

All the best to both of you.

Julia

concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 3/29/2010 3:08 AM (GMT -7)   
They did the MRI because they thought he had a fistula which they don't see after getting MRI back. But there is air is in bladder that they see and they are wondering what that is all about.

concernedparent
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 3/31/2010 4:46 PM (GMT -7)   
Just an update, my son finally agreed to go in for colonostopy on Friday. I hope from what I have read with people with similar symptoms that he won't need surgery. Another thing I was wondering are there certain drugs a pediatric doctor can't prescribe that a adult gastrolengist can prescribe ?

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 4/1/2010 11:12 AM (GMT -7)   
Glad he decided to go for the colonoscopy.
In answer to your question no, I do not believe there are drugs that a paediatric doctor can't prescribe. I have queried several drugs that my son is on because the information leaflet supplied with them states it is not to be given to children under the age of 17(he's 16) but what that basically means is that it isn't licensed for children under 17(down to the consultant to weigh the 'fors and againsts') Otherwise it appears that all drugs if deemed suitable can be used for minors albeit at possible reduced doses.
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