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Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » I'm back with more questions . . .


12-29-2011, 12:18 AM   #1
AndiGirl
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I'm back with more questions . . .

I've missed all my friends at the forum! It's been very busy here with the kids, work, and the holidays. I sure hope you all had a very Merry Christmas and holiday season.

Update/Questions- The doctor is not willing to perform the surgery for severe acid reflux on my sister. She has tested positive for Crohn's Disease on the Prometheus Lab test, and has had many of the alarming symptoms associated with CD. She has some that I haven't had yet; Iritis (eye inflammation) and bleeding with defecation. Her colonoscopy and other scopes have come back negative, no signs of CD or ulcerations. She is at her wits end because she is feeling quite ill: cramping, nausea, her heartburn/reflux is always a big problem, fatigue, and severe joint and body pains. She wants the surgery to help with the reflux, but she isn't quite in the clear yet. Her doctor is certain that she doesn't have Crohn's Disease because there is no evidence on her scope procedures/x-rays. I know a lot about CD, but I don't know how to help or counsel her. Any ideas? Does one absolutely need the evidence found from scope procedures/x-rays to be diagnosed? She seems to have a heck of a lot more than IBS going on.

The Positive- I was able to enjoy Christmas dinner without repercussions. Yay!!! My sister, the one who is in health limbo, is a Lia Sophia consultant. She came to my school before Christmas vacation for an informal lunch time party. Enough of my co-workers bought things, so I ended up with some terrific deals on jewelry. I love bling!!! Scott gave me some money to spend on jewelry. Jewelry, even if it's just costume jewelry, raises my spirits. My relationship with that sister is much better, and not just because of the jewelry. I am grateful that she is being kind and loving toward me. We've had some tough times in the past.

My cantankerous old GI doctor has officially retired. I can now change doctors without worrying about hurting his feelings, or coming up with an excuse to go with someone else.

The Negative- I have to meet with the ENT doctor to discuss and schedule a time for Beth, my almost two year-old daughter, to have tubes put in her ears. She is always getting ear infections. I will need to also schedule an appointment with an allergist for Beth. She has horrible allergies. My poor sweet baby.

The Funny- I gave my brother, Randy, a singing toilet snowman as one of his Christmas presents. It is activated by light and motion. It says some of the darndest things, "Ho ho ho, who has to go? . . . What you doing in there? Wait! I don't want to know!" He loved it! It was from one Crohnie to another Crohnie!
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Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Multivitamin
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
Entocort 3 mg (3 capsules by mouth for 8 weeks, then tapering to 2 capsules for three months)
12-29-2011, 05:03 AM   #2
Rebecca85
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Hi Andi! Glad you enjoyed your Christmas dinner, and that you and your sister are getting along better.

Has your sister had anything like a CT or MRI or barium x-ray of her abdomen? Just in case there is cd in her small intestine where the scopes can't reach? With your family history and her symptoms, I very much doubt it's anything else.

Hope Beth's OK. When I was her age, I used to get lots of ear infections. Luckily I grew out of it, and have probably only had one or two infections in the last 10 years.
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12-29-2011, 05:34 PM   #3
KayleighMeek
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Hey Im glad you enjoyed your Christmas, I don't know what to suggest with your sister just to keep on at the dr's until she gets an answer.
I used to have a lot of problem with my ears as a child and still have some now I had gromits put in my ears when I was a child (don't know if this is the same as what your daughter is having) to open up the war canal as they were to small and I was prone to ear infections and my hearing was terrible. After the op I was a lot better my hearing has improved and very rarely get infections. I hope it helps your daughter too.
That's a good gift you gave to your brother, my younger sister got me a thing called slam dump, it's a basketball game to play whilst in the bathroom and it's very good fun lol.
Also good news on the GI and wish your family all the best xxx
12-29-2011, 09:11 PM   #4
AndiGirl
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Thank you for the suggestions and support Rebecca and Kayleigh. I brought Beth to her ENT appointment today, we started out seeing the audiologist. Evidently, she has some temporary hearing loss due to fluid behind her ears. We were supposed to see the ENT doctor afterward, but she was called away to a the operating room. We will see her tomorrow.

GI doctor- I will now be a new patient of Dr. Bauer. I've never met him, but I've heard good things about him.
12-29-2011, 09:36 PM   #5
MADiMarc
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Hi Andy! Glad your Christmas was a good one. Yah for Scott giving you what you wanted instead of needed! We all need that kind of stuff from time to time. And if Scott is anything like my Joe, jewelry buying is NOT his thing!

I have no suggestions for your sister except one: if she isn't getting the answers she wants/needs, find a different doctor. I understand the adage of if you hear hoof beats, look for horses before zebras but sometimes the docs are just too conservative.

Now, the tubes in Beth's ears are not a negative. It will relieve the pressure and hopefully save her ear drums from severe damage that could cause permanent hearing loss. Spoken as a speech path! I know, I know: you are her mommy and the term "minor" procedure is a crock. But honestly, it will help both of you in the long run. And think of all the antibotics she will no longer need to be subjected to. Nasty things!

I hope you love your new GI. I still haven't found one that is acceptable since mine retired 3 years ago!

Hugs!
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12-29-2011, 09:52 PM   #6
AndiGirl
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It's always good to hear from you Michele! I hope you had a wonderful Christmas. Scott was into jewelry giving before kids. He seemed to morph into a different man after kids. LOL! We both had a tough year, so I'm sure that was his loving way of saying, "I love you, you deserve something special."

I will be nervous, yet relieved once Beth gets the tubes put in her ears. I am so sick of the ear infections. Poor baby! Her last infection wouldn't clear up with the usual antibiotics: Amoxicillin, Augmentin, or Omnicef, so the Dr. ordered Rocephin. That had to be given via two intermuscular injections given three days in a row. Six shots! I absolutely hated it! I know little Beth did too. I couldn't stand the screaming and crying. I know it was for her own good, but to have to put my baby through that three days in a row. I was the one who had to bring her to the hated appointments, as Scott had to sleep. I had to sweet talk Randy into watching Alex for an hour three days in a row. I'm glad that's behind us.

That's a bummer that you haven't found a good GI doc. Anchorage is getting more and more of them, so there are more to pick from. I didn't want to transfer over to Dr. Sweeney Jr. He looks (and probably acts) too much like his father. Dr. Sweeney was competent, but he wasn't very nice and had no bedside manners. I feel a complete change will be good for me. I'll give Dr. Bauer a fair trial.
12-29-2011, 10:03 PM   #7
MADiMarc
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My Christmas was fine. Yup, that sums it up.

6 shots! For the love of Pete! Poor baby! Man, my legs and butt hurt just thinking about that. I am SO weirded out by needles!
12-29-2011, 11:04 PM   #8
archie
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Hiya just thought I'd butt in, before I was diagnosed or even had symptoms of cd I had iritis for weeks it was awful I looked like I'd been punched at that stage I didn't think anything much about it except an eye infection and how much it was going to cost to replace my make-up. Shortly after I developed the heartburn and irritation in my upper abdomen which is why I eventually went to the doc. I still didn't have any signs of crohns, the pain then eventually trickled down to the RLQ and thats when I started getting more symptoms and finally IBD was confirmed via CT etc etc. All in all a 6 month process. I think ur sis should have more testing if she hasn't already.

As for your daughter my best friends twins have just had the same procedure and all positive. Try not to worry. Good luck
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12-29-2011, 11:15 PM   #9
AndiGirl
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Thanks, Archie! It's funny how things can turn in such a short amount of time. My sister's husband is in the Army, so she goes to the VA. I told her to use her find a non-military GI doctor. I'm not slamming on the VA, but I think she needs another opinion. I know that the VA is funded by the federal government. They receive government funding and who knows where they try to scrimp and save on costs. Just a thought that popped into my head.

I was the opposite of you in my symptoms. I think my started lower and went up. I have been struggling with horrid acid reflux for the past few months. I am now on a new medication for the reflux and am feeling much better.
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