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Recent content by Brian'sMom

  1. Brian'sMom

    Another Surgery

    Well, things have declined. DS has been having blood in his rectal drainage for past month or more. It's increased again and now is accompanied with bad cramps. Weight loss. Labs just came back that a stool sample of this drainage is all negative. Our Mayo team wants us to return to Minnesota...
  2. Brian'sMom

    Great tip on taking medicine that tastes bad

    My son was prescribed the dreaded Flagyl after his MRE yesterday. He hates how it tastes. And its 3x a day. So today I searched some tips and I found this. I had to post this: To wrap the pill in a piece of Fruit by the Foot or a piece of a Fruit Rollup. We just did it. It worked so GREAT that...
  3. Brian'sMom

    Ulcers on the back of throat

    My son is having another round of mouth ulcers. He gets them on his gums and lips, but has anyone ever had them on that uvula thing that dangles in the back ot the throat? Or on the sides of the back of his throat? You can't really threat those with any med... we have started Chlorhexadine mouth...
  4. Brian'sMom

    Feeling Baffled

    Some of you may have read about Brian awhile back having a mouthful of ulcers. It was wierd that a week ago most stopped hurting almost suddenly. Then a day later he had a fever of 101.4- Then the next day he was fine. And the next day after that (It was july 4th now). Then Saturday he had a...
  5. Brian'sMom

    Stubborn mouth Ulcers for first time

    DS had ileostomy March 22. All meds stayed the same. Mid May his very first mouth ulcer appeared. Now today, he has around 12. There are 3 on his uvela. Now it makes it hard for him to eat... So off go the pounds again!! I googled them and saw in some places that MTX cause this... or the need to...
  6. Brian'sMom

    MTX-Preservatives or None

    I know we've all talked about this before. I can't find it! Is there a reason to do MTX with no preservatives? Our pharmacy apparently didn't have the non preservative kind and faxed our GI to see if the other was ok to fill instead. Now it has me thinking if I'd rather wait for the other...
  7. Brian'sMom

    Update in case info is useful to others

    We had appt on June 11th. At first I was disappointed because his SED went up from 41 to 47 and his CRP went up from 1.6 to 2.1. And he was very anemic. I was like What the?!!! We do 8 shots a month and We did an ileostomy... what more can this disease take? Well, today we got back the rest of...
  8. Brian'sMom

    New Stoma-wax and size questions

    My son uses the Hollister no tape wafer. And he does the wax ring. Lately the wax squeezes out and is around the stoma. Wierd this never happened in the past month and half. Why is this happening? And the stoma was a red ball - like a cherry tomato-- now it's longer and looks like a funnel kind...
  9. Brian'sMom

    Shower tips for ileostomy

    My son has a new ileostomy. Everything is going great. One thing I need tips on is showering. Right now he likes to shower and then change the appliance because he hates the feel of getting the wafer and the bag wet. Summer is upon us and there is no way this boy will be able to take a shower...
  10. Brian'sMom

    Back after our Surgery

    First I would like to say, Mayo in Minnesota is fantastic. Brian had a loop ileostomy done. The surgeon took time to go inch by inch and look at every section of bowel. He went in thinking the terminal ileum would need to be taken out. But to the surprise of us all he felt it didn't need to come...
  11. Brian'sMom

    Hospital again

    After a weekend of not being able to keep ng tube down an and previous elevated labs an mre was ordered for tues. Wednesday jan 29th we were admitted again. My son had lost 6 lbs in short time frame too. They put in pic line and he's been on tpn. We will be here til monday feb 3rd. Original...
  12. Brian'sMom

    Terminal Ileum question

    Just a reminder: My son's issues have been his rectum and his terminal ileum. So its been 37 days of total EEN and Cortofoam and 79 days of Methotrexate injections. And 120 days of Cimzia biweekly. My son continues to gain weight... so thats good. But his cramps continue also. In the last week...
  13. Brian'sMom

    EEN doing its trick

    I am pleased with our results doing EEN. I worried that he's too old and too long after diagnosis for it to work. My son is so commited to it. And its been a holiday week... lots of eating at family gatherings, yet he's just fine. He's getting his food 24/7 and I think he's gotten used to how...
  14. Brian'sMom

    EEN Poo

    In advance...sorry this is a poo thread. But after just finishing Flagyl for C Diff I have a question. Is stool while on total EEN watery? Our GI Nurse said to not expect formed...but not watery. While in the hospital it was watery. A few days after being home he had some that was somewhat...
  15. Brian'sMom

    Need your opinions-We're having problems

    As you all know Brian has been trending downward. I have mentioned things to the doctors at Mayo and Here in KC. But they don't really address his non eating and vomiting. I'm worried that something is wrong. Let me give you some background why I do. 1-He keeps getting sick with various things...
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