Frustration

[CaitiesMom]

Actually, that doesn't even begin to describe what I am feeling. And I am not the one suffering the symptoms, that would be my 15 year old daughter. I can only imagine how she feels.....

It started when she was 8, severe abdominal pain, nausea, diarrhea, constipation, etc. It lasted for months and with test after test including a colonoscopy and an endoscope coming up empty. No answers, other than in the end, that it was psychological. I knew it wasn't, but the symptoms suddenly went away just as fast as they appeared so it became a distant memory.

Fast forward seven years later and here we are today. Four months ago, sudden onset of severe abdominal pain, nausea, bloating, cramping, diarrhea. Two weeks ago another colonoscopy which showed some scarring due to "previous injury". Still no diagnosis given, but the doc prescribed Salofalk, which resulted in bloody diaherria and stabbing abdominal pain. Apparently this was OK, and we were told that she should keep taking the meds as they will help in the long run, and so she is. Sure sounds like Crohns or colitis to me, but who the heck am I.

We have altered her diet to consist of foods high in soluable fibre, low fat, no whole grains, etc. Still she is in excruciating pain, she actually sweats from the pain. She has on average one week per month where she is feeling well enough to leave the house. This is horrible, she is 15, she has school to worry about and this really should be a carefree time in her life spent giggling with her friends.

What can I do for her pain? The docs have said give her Advil and Tylenol. From all I read, Advil can worsen symptoms. They don't seem to touch the pain anyway. Is there something out there that can help?? Will limiting her diet help get it under control sometime soon?? Any information will be helpful, I am virtually at a loss.....

 

[Walt]

welcome aboard...

Hi CaitiesMom, and welcome to our forum.
It's not my way to suggest Dx's for anyone, but I will say that your list of her symptoms and suffering is all too familiar to those with bowel disease.
We certainly hope, that isn't the case, because new cases of IBD make IBD'ers sad.
We're sorry you had to join our club, lots of helpful real people here and we're glad to have you aboard.

As you learn to snoop around this forum, you will find a seperate section for discussing sick children and many here suffer but remain undiagnosed.

My best choice for my gut pain is plain tylenol, nothing fancy.
If that doesn't help, there are stronger options, but they come with their own risks.
I avoid the category known as 'NSAIDS', which are common but have caused me personally to slide into a wicked flareup.
I guess that's non-steroid anti-inflammatory drugs.

welcome,
Walt

 

[dreamintwilight]

Hi there, Caitiesmom!

So sorry to hear about what you and your daughter are having to suffer through. I know it was hard for my husband to watch me go through the whole process and he wished he could change places with me. I was lucky enough to get a swift diagnosis. I can't imagine having to wait for as long as you've had to.

Are the doctors offering to do more testing? If her disease is in the small intestine, that would not likely be seen on a regular colonoscopy Has your daughter had any type of imaging scan like a CT or MRI? those are also supposed to pick up things in the small intestine that may not be seen in a colonoscopy.

Have you thought about getting a 2nd opinion (or 3rd!) from another doctor? Once you read more threads in the forum, you will start to notice it can sometimes take many doctors before people are able to finally get a doctor who will listen and do more testing--not just allowing you and your family to suffer.

I really feel for what you are going through. Keep pushing your doctors. If you don't feel like they are doing enough, go elsewhere. There's no need for your daughter to go through the mental and physical anguish! Keep us updated!

Oh, and here's the sub-forum Walt was referring to. It's located in the Support Forum and it's called "Parents of Kids with IBD." You can get to know other moms and dads (and grandparents maybe!) who have or still are struggling with some of the same issues you are. Hope you find some helpful advice in there!

 

[mizgarnet]

Hi CaitiesMom!

I really hope Caitie finds relief soon (and you do too!). The dx process is very frustrating. When I feel a flare coming on, I go on a liquid diet. Sometimes I am lucky and a few days will do the trick and sometimes it takes a few weeks. I also eat a low residue diet after the liquid diet for a week or so. This may or may not help Caitie. Make sure you keep a symptom and food diary. Keep as much detail as you can. It will help you see patterns and will be evidence to the doctor. For pain relief, I use Tylenol and a heating pad.

Research and read the posts. There is a lot of good experience based info on this site.

Hugs!
Wendy

 

[DustyKat]

Hi CaitiesMom and :welcome:

How awful for you both! I went through a similar experience with my daughter, she went undiagnosed for 18 months. I agree with Marisa, push for more testing and if need be get a second, third or fourth opinion. We have an undiagnosed club here so have a browse through that and see if anything rings a bell...........

http://www.crohnsforum.com/showthread.php?t=13113

Also if you don't keep a diary it may be worthwhile just to keep things in order...................

http://www.crohnsforum.com/wiki/Diary-Inclusions

Previous injury to me implies scarring which could be due to healed flaring from IBD. Advil would certainly be contraindicated if your daughter has IBD. To be honest in my own daughters case diet was of little benefit at the time but everyone is different and for many diet does help to alleviate symptoms.

Does she have other symptoms like joint aches, sore eyes, rashes? Being 15 do you think she is developing normally? The fact that you don't mention bleeding, well until starting the Salofalk, may well mean her problems are located higher in the bowel where the scope won't reach. Ummmm I wouldn't have it was okay to be bleeding at any time!

At any age no one deserves to be tied to the house let alone at 15. IBD or no IBD something is wrong with your daughter and it needs to taken seriously and sorted out now.

Good luck and push, yell, scream and kick until you get answers!

Thinking of you, :hug:
Dusty

 

[Awbrey]

Hi welcome to the forum,
Im so sorry that she is going through this it is horrible. The only thing that I notice that makes a difference for me is Garden of life vitamins. I take the womens and also take the Defense ones that have probiotics other than that nothing seems to really help, I cant believe the doc told you to give her advil that is the worst for Chrons :-( I would get another opinion for pain relief it is not fair to make someone suffer.
Best of luck happy you found the forum

 

[ameslouise]

Hi Catie's mom and welcome to the forum! (Can we get your name???!)

Where are you located? Is a second opinion available to you? NO ONE should suffer with pain like your daughter is going through. That is ridiculous!

I am going to be Joan (Astra) to the punch and tell you to scream and yell and carry on until someone gets you some help with the pain! Then keep yelling until you get some more testing done -at the very least a small bowel follow thru to see what's going on in the small intestine.

I hope she finds some relief soon! Take care of her and keep us updated on her progress.

- Amy

 

[CaitiesMom]

Thank you all for the warm welcome and for all the responses. I live in Ontario, Canada, and although we do have a well established universal health care system, it sort of limits the ability for the patient to shop around. I actually work for a group pf 60 physicians. This sort of makes my ability to kick and scream a little more limited, if I wish to keep my job. When all else fails and you can't kick up a fuss, crying also gets results! This is what I did earlier, and tomorrow she will be starting prednisone. The theory was that although they feel she is very asymptomatic, if she responds to this drug, it will then give them the reassurances needed to actually say she has IBD.

Whatever, I suppose. I am just relieved that someone listened to me and we have a little hope for some relief, whatever the general feeling is about whether it will work or not. Of course I know that this isn't a cure and I know that the road will just be starting, but as I am sure all of you understand, an answer is the first step, and we really would like one.

Again, thanks so much to all of you for all of the information, it all has been very helpful, and it did give me the push I needed. Will keep you posted on how we make out. From what I am told, we should have a fairly quick answer and should see some improvement within a couple of days. That would be wonderful!!!

 

[CaitiesMom]

Oh, and I am Stephanie, I am Caities Mom, but my name is Stephanie!

 

[Crohn's 35]

Hi Stephanie! Weclome, hope I can help you here, I am from Ontario too, used to be in the GTA Toronto. Go to Shoppers drugmart and ask at the pharmacy for Tylenol #1 with codeine, you don't need a prescription , just tell them it is for you. I get them in the biggest bottle and the Life brand is cheaper. Another thing is Dicylomine, again it is a antispasmotic and she doesnt need a prescription. Like the others say, no asprin based or ibuprofen. Heating pad helps wonders!! I use it all the time. If you need any more help let me know ok? Big hugs to you both!

 

[Walt]

working on a puzzle

Hello Stephanie,
If you like, you can add your name to all of your posts, like many others here do, by adding it just once to your signature.
Click the upper leftside: User CP
From there, click Edit Signature and you can add your name.
It helps folks know who we're talking to...

"The theory was that although they feel she is very asymptomatic, if she responds to this drug, it will then give them the reassurances needed to actually say she has IBD."

Pardon my thinking out loud, but if she is showing no symptoms, how can she respond to Pred? and how can they tell? what am I missing?

There are many angles from which to build and reinforce a Dx.
Response to a particular drug may be yet another clue,
but it takes a preponderance of evidence to solve the IBD puzzle.

What are the other clues saying? such as bloodwork, inflammation markers, scopes, case history, family history, physical exam, other tests, etc etc

You can read endless bad things about Prednisone and other drugs on the web, but it's individual response to a drug that matters.

hope you find some answers,
and your daughter some relief,
Walt

 

[CDDad]

Hi,
You said "Who the heck am I?" You are her mom - and Mom's just know! I hope you can find the right doc to get her diagnosed. I have an 8 year old daughter and I can hardly imagine what you've gone through.

No one should have to live with pain like that. I was thinking maybe surgery would be the answer, but she needs a diagnosis first. Good luck to you and Caitie!

 

[Astra]

Hi Stephanie
and welcome

My reputation preceeds me! lol @ you Amy!

Just my two pennies here, but please don't feel intimidated by the docs who you work for, I feel they are doing your Caitie a terrible injustice here!
I also agree with Walt, how contrary?
If Caitie is on Pred, you'll soon see a huge difference in her symptoms, so besta luck with that.
Let us know how you are both doing
lotsa luv
Joan xxx

 

[CaitiesMom]

Well folks, all I have to say is: HOLY COW! What a difference. She started the prednisone on Thursday morning. Friday morning she felt well enough to attempt school, Friday night I had 4 teenage girls camped out in my basement and tonight she is feeling well enough to sleep at her friends house. She hasn't done that in weeks. I am ecstatic!!

I know that this euphoria will likely be short-lived and I am afraid of what will come now that we will have the attention (hopefully) of her GI doc and Pediatrician. I am guessing that with both the 5 ASA and prednisone responses, they will get moving toward more testing, a definite diagnosis, and hopefully a long-term treatment plan. I am heart-broken with the possibility of my child having this disease, but at the same time, if this is the load she is meant to carry, then in the very least she deserves to live as comfortably and normally as possible.

This is a very complicated and extensive disease, I admire all of you for finding your own ways to manage it and for not letting it get you. Our journey is just beginning, and I know we still have a long and more frustrating road ahead, but I am just so thrilled to see her smile again that I won't allow myself to go any further than that right now!

 

[vickyhunter]

Just read all this and I'm so glad your daughter is feeling better! I have Crohn's and I'm pretty young too, 19. I got it when I was 7 so I know exactly how your daughter must feel right now! I missed out on a whole 8 months of school at one point, it was pretty grim!
I'm on Azathioprine and live a completely normal life at the moment, though
This isn't meant to "rub it in" to anyone who is suffering at the moment so I hope I don't offend anyone, it's meant to be reassuring to you that your daughter has the potential to live a perfectly normal life and do all the things she wants to do

I had a little flare up recently but caught it early and took my last steroid today. Make sure your daughter is aware of how easy it is to put on weight on steroids, if she's conscious of things like that, being a 15 year old girl and all!
I hope she gets well and gets the treatment she needs
xxxxxxxxxxxx

 

[CDDad]

Hi CaitiesMom,
That is great news about the pred working! I'm sure you've read about the side effects, but when you need it, it can be a life saver. It has always been the drug I went to when I was at my worst and nothing else was working. One of it's great properties, is giving a general sense of well being, in addition to fast lowering of inflamation.

edit - oh yeah, I've eaten more chocolate donuts on Pred than any other time in my life! On a high enough dose, the appetite just can not be fed enough.

 

[Jennjenn]

Hi welcome

I am sooo happy that the prednisone is working! I would like others have mentioned, fight for what is right. You know your daughter better than anyone else....you are her best advocate! Hopefully the doctors will see the predisone is helping and get her a diagnosis soon.

 

[Mizz Lozy]

Hi caitiesmum
While i was reading your post it felt like i was reading my own life story. My heart goes out to you, your an amazing mother to stick by her side through these tough times. Your daughter is not alone and never will be,always remind her of that.
As for the Advil it can be very dangerous to give to your daughter for such a long period of time, i learnt that the hard way and my liver was shutting down because of it.
So for my pain relief because im allergic to codiene i usually take Zydol (tramadol) which is a morphine based tablet, although i only take that when the pain is unbareable.

Take care
- Lauren

 

[ameslouise]

Stephanie, that is great news! She must be thrilled to be "back to normal!" I hope things continue to go well thru the pred taper and that the 5ASA works well too.

- Amy