My adult daughter (nonverbal, tube fed) diagnosed

[becklinn77]

My daughter, Heather, (actually step-daughter, but I take care of her so...) is 27 with severe Cerebral Palsy. She is nonverbal, tube fed, very low functioning. But for about 3 years we have known there was a problem.
We tried her primary care doctor over and over, explaining to him the vague symptoms we were observing. "She has constant diarrhea. She seems to be hurting. She just isn't happy like she has always been." Then about a year and a half ago she developed sores on her bottom that wouldn't heal. He sent us to a wound care clinic. About a year ago, the clinic doctor found an article with pictures of exactly what we were seeing on Heather. It was an article on Crohn's - and he suggested we take it to her primary care and see if this could be what we were dealing with.
Primary care said "I seriously doubt it, but we'll send you to a gastro to be sure."
Gastro said "I seriously doubt it, but we'll send you for a blood test and upper GI to be sure."
The blood test came back positive. Upper GI did not confirm.
Gastro said "Well, the blood test isn't very accurate. Normally we'd do a colonoscopy, but that would be so hard on her. So we're just going to say, no, she doesn't have Crohn's"
Fast forward a year, with a couple more visits to her primary care, she's lost 15% of her body weight now. He sends us back to the gastro who agrees to do the colonoscopy.
Guess what? It's definitely Crohn's.
And she has been in pain and not being treated for YEARS.
He tells us that many of the medications he would normally use to treat her won't work with her feeding tube.
So I'm here for more information. To find out if there are things I can do at home that would make her more comfortable. To find out if other tube fed individuals have had success and with what medications.
Thanks for listening...

 

[Lady Organic]

Hi I am so sorry you have had such poor, careless attitude/ help from that gastro-enterologist. This doctor's attitude from first to last meeting is unacceptable and could even be reported to his association/order imo. Sounds like his true motive is to not wanting to have your step-daughter as his patient, because of her overall condition and the different challenges she presents. I may be wrong , but thats how I feel reading your story. My suggestion is really to meet another gastro-enterologist with all the blood and colonoscopy results. We cant possibly let someone suffer for such reasons and I cant understand why medications wouldnt work because she is tube fed. many of our medications are given by injections. This doesnt make sense to me. wishing you well.

 

[Jennifer]

Hi and welcome to the forum!

I'm sorry to hear about your daughter. I agree with finding another GI as this one seems to make mistake after mistake. She should have had a colonoscopy in the beginning and as mentioned there are many medications given through IV or injection like Methotrexate, Humira, Remicade, Entyvio and even Simponi. I'd seek out a new GI as soon as possible if you're able.

Even though she's an adult I think you will benefit from the parent's section here on the forum: http://www.crohnsforum.com/forumdisplay.php?f=49

Good luck and keep us posted.

 

[24601]

I'm so sorry to hear that your daughter has been suffering like this and that the GI has been prepared to leave her in pain.

I agree with the need for a new GI. This one is no good. As the others have said, I think there are medications that can be used for your daughter.

I really hope that you can get help from a new GI who will get her feeling better.

Wishing you all the best