Daughter not diagnosed yet, going to see a GI today.

[Victoria816]

My daughter, 20 yrs, has been having issues for over 6 months. In January she went to the doctor and they told her she had yeast in her stool and put her on probiotics. I thought this was helping until recently I realized she was not letting us know the severity of it because she was scared/in denial. Her symptoms are

Frequent bm/ mucous and sometimes blood. Over 10 times a day
Weight loss 12 pounds since January
Headache
Nausea/ Vomiting
Anxiety due to bm and bm due to anxiety
Stomach cramping/pain
Fatigue

We went to the ER and they said her white blood cells were slightly elevated, her CRP level was 51, extremely high, and another inflammatory test was elevated. We are seeing a GI doctor today in the city. I have googled symptoms and it led me to your forum. Any advice/ feedback/ questions I should ask the doctor would be great.

My daughter is scared that because she let this go for so ong that there has been some irreversible damage.

 

[bozzylozzy]

Hi victoria.. im sorry to hear that your daughter is having these problems
We do have a parents and family section - so make yourself known in there.. as there are lots of mums and dads in the same position as you. And I think they will know best how to support you through this aswell as your daughter

Is this her 1st GI appointment? Make sure you go with a written list of her symptoms and questions so as not to miss anything
Is there any family history of IBD?

Probably best to try and push for a colonoscopy with biopsies.. as this is the best way to get a diagnosis.
Please keep us updated and feel free to ask any questions and vent if you need to xx

 

[bozzylozzy]

Here is a link to the parents page x

http://www.crohnsforum.com/forumdisplay.php?f=49

 

[Victoria816]

This is her first GI appointment. We have no idea what to expect. There is no family history that I know of.

We will make a list of her symptoms. Poor kid can't keep any food or water in. Thank you!!!!

 

[bozzylozzy]

I think the fact she already shows high CRP (im guessing her ESR too?) Would give an indication for the GI to start IBD investigations and coeliac too.

There ae loads of tests that can be done, such as;
CT and MRI scan
Blood tests: vitamin levels (D, folate, B12, iron)
Pill camera
Colonoscopy
Gastroscopy/endoscopy (down the throat)
Ultrasound

Like I say.. the best I feel would be a colonoscopy and gastroscopy - but quite a lot of doctors may try less invasive scans first.
They may also want her to try a gluten free diet for a while or keep a food diary to check for any trigger foods or potential intolerance/allergies

Good luck! X

 

[Jmrogers4]

A fecal calprotectin test is a good place to start it is non-invasive but will tell if there is inflammation in the GI tract.
But as bozzylozzy says best thing is scopes with biopsies. Even if scopes do not show visible inflammation the biopsies can tell if there is microscopic inflammation going on.
I hope you get answers soon and can start on a plan to get your daughter feeling well again.
We do have a fabulous parent section here and several active parents in there have children about your daughters age.

 

[embersglow1]

That's so great that you have already looked up a bunch of stuff!
I second writing it all down and bringing it with to the doctor.
Sounds like scheduling a colonoscopy asap will be in order!

Hopefully they can get her on SOMETHING right away but even after a finger in my bun I had to wait two weeks for my colonoscopy and any medication.

During that time I kept a food diary and focused on staying hydrated. Really took it easy. Napped if I needed, etc.

And ate a low impact diet, clear 100% juices, lite G2, saltibes and pretzels. And smoothies. Smoothies are a sneaky way to get important nutrients in! If dairy is making thibgs worse try almond or hemp milk or rice milk.

Its important to try to get sonething in the body to help with fatigue but its tempting to not eat cuz you are tired of pooping, too.

Good luck to you guys and keep us posted!

 

[Tesscorm]

Welcome to the forum! But, sorry that your daughter's not well.

You've been given good advice/info re tests, hopefully, the GI will plan to move ahead with some of them soon. At this point, as you have little info yet on your daughter, all I can suggest is push for testing!!! Often doctors will wait and see but, try to insist that your daughter has had symptoms for a while and you'd like to begin the testing process to rule things out, rather than simply waiting to see what happens with a mild treatment (as your daughter has already tried with the probiotics)...

My son's GI was fairly certain he had Crohn's simply from a description of his symptoms and an ultrasound, however, the diagnosis was only confirmed after an endoscopy and colonoscopy a few days later. And, it was only at this time that he was able to get a better idea of the location, extent, etc. of his crohns.

In the meantime, if your daughter is having a tough time eating, consider some nutritional shakes (ie Boost, Ensure, etc.) to help provide her with some nutrition.

If it is crohns, do some reading on exclusive Enteral Nutrition (see our treatment section, or forum wiki or just ask )... to induce remission, steroids are most commonly used, however, exclusive EN has a comparable success rate (in children, not sure re adults) as steroids without any side effects. This is what my son, at 17, used to induce remission. But, it's commonly used around the world (again, I'm more familiar with it's use in children) but not so much in the U.S. - you may need to be the one to initiate a discussion re EN with your daughter's GI. Sorry, not trying to bombard you with info when you don't even have a diagnosis yet but, it's difficult to make decisions (or even be aware of everything) when you are initially dealing with a diagnosis and that first treatment. :ghug:

Good luck today!

 

[Victoria816]

Home from the GI doctor

They did a ton of bloodwork and scheduled a colonoscopy and endoscopy with biopsies for Monday. They bumped a couple patients to get her in and I am extremely nervous. The doctor did mention Crohns, Collitis, and Celiac and that is why they want to biopsy. Thank you all for your support and info. I know nothing about this and just want to do whatever I can do to make her healthy again.

 

[Jmrogers4]

Good luck on Monday, update us when you can. You might want to check the wiki here on colonoscopy prep for a few tips to help her along

 

[bozzylozzy]

Big hugs :hug:

That is so good that he is ordering the scopes to be done so quickly! Good luck for next week - and keep us updated xx

 

[Victoria816]

I can not express my gratitude enough. Thank you all for taking the time to answer my questions. I didn't sleep much last night and have seemed to work myself into a panic. The doctor told me not to research and I did not listen. I am trying to stay positive and take it day by day. Thank you all again!

 

[Jmrogers4]

Welcome to the club!! Most of us have learned the hard way about research but we still do it. It is scary when you don't know but I have found that in the long run all the research I have done helps me make decisions when I have to instead of GI suggesting something and I don't know anything about it or what our choices are. He has gotten to know me know and instead of just saying this is what we are going to do, he will give me options and consequences of those actions good and bad.
You will be a great advocate for your daughter and it is good that you are being proactive and will be ready to help her whatever the outcome.
We all have those panic moments as parents then you pull yourself together and keep moving forward because these are our children and Mama Bear comes out when they are in pain. Stay strong!

 

[Victoria816]

Update** My daughter had her colonoscopy and endoscopy with several biopsies. We will have biopsy results by the end of the week, but they are starting treatment for Crohn's. She was extremely inflammed, the pictures are disturbing. Starting 40mg of Prednisone and then treatment once she tapers off that. Doctors gave her a bunch of vaccines and tested for tubercu. Again, I can't even process this yet and am so worried and heart broken for her. Any and all advice, support, anything is appreciated. She is really weak and tired tonight. I'm sure I will become a regular on here.

 

[bozzylozzy]

Im sorry to hear that they found Crohn's disease.. the biopsies will confirm it. But im glad they are starting treatment asap.
Prednisone is fantastic medication for a lot of people. It should start to kick in very soon. Once it is under control.. she can taper off it..

Prednisone often brings a lot of side effects. . Such as acne and weight gain.. so dont be alarmed. I really wish her the best of luck to get this under control and big hugs to you too xx