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Crohn's Disease
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Posted 2/4/2024 8:11 PM (GMT 0)
Hi Tom, it's been a bit since you have given us an update on how your daughter is doing. I have to assume she is doing well.

Check in when you have a minute.
Posted 2/4/2024 10:35 PM (GMT 0)
Hi Susie,

Thanks so much for asking. I've been active on the forum, but you're right, I haven't given much of an update on my Daughter. Not too much to tell actually. Her GI is having her stay the course with Stelara. She has an upcoming MRI to get a more accurate assessment of where things are at, as her last scope couldn't reach her TI. So kind of a holding pattern for now. Overall, without the diagnostics, she does seem to be doing well.

Tom.
Posted 2/8/2024 3:58 PM (GMT 0)
Hopefully the MRI will come back clean. The waiting is frustrating for sure. Hopefully she will continue to do well on the Stelara.

Keep us posted.
Posted 2/9/2024 4:29 AM (GMT 0)
Tom,

I think of you and your daughter frequently. It's so very difficult to have your children have health issues and to watch, wait and pray. You've been such a an example for me.

I hope the MRI goes well and that your daughter thrives.

I have a son that was in a car accident with a traumatic brain injury in 2011... He was in his last classes to finish his classes to be an actuary. It's taken until now for him to just start the journey to being self sufficient. My daughter developed long Covid heart issues. They are both hanging in there... But it's difficult to be on the sidelines. I'd much rather have had the issues myself ..

Your calm and supportive posts have helped me tremendously while trying to navigate these situations.

Thank you for providing a good example. I appreciate you.

Crossing my fingers and saying lots of prayer for all of us.

Clo
Posted 2/11/2024 3:45 PM (GMT 0)

straydog said...
Hopefully the MRI will come back clean. The waiting is frustrating for sure. Hopefully she will continue to do well on the Stelara.

Keep us posted.

Susie,

I'm sure this is going to sound very confusing, but I've been cursing your name. Since your post inquiring about my Daughter, things have gone a bit downhill, and I choose to blame you for it. Of course I'm joking, but we've had some long days.
First off, she did have the MRI. That's all well and good, but at around midnight that night, she's doubled over in the worst pain she's ever had. So off to emergency. The attending physician, suspecting gall stones, and ordered an ultrasound, but also suspected the contrast for the MRI. The ultrasound came back negative, and the issue seems to have resolved, so likely the contrast.
Next dilemma. I came down with Covid. Absolute worst thing I've ever had in my life. Unfortunately, as vigilant as I am, My Daughter now has it. So far holding her own, but day by day.
The next time I see a post from you asking how things are going, I'm going to faint.
Posted 2/11/2024 3:53 PM (GMT 0)

clo2014 said...
Tom,

I think of you and your daughter frequently. It's so very difficult to have your children have health issues and to watch, wait and pray. You've been such a an example for me.

I hope the MRI goes well and that your daughter thrives.

I have a son that was in a car accident with a traumatic brain injury in 2011... He was in his last classes to finish his classes to be an actuary. It's taken until now for him to just start the journey to being self sufficient. My daughter developed long Covid heart issues. They are both hanging in there... But it's difficult to be on the sidelines. I'd much rather have had the issues myself ..

Your calm and supportive posts have helped me tremendously while trying to navigate these situations.

Thank you for providing a good example. I appreciate you.

Crossing my fingers and saying lots of prayer for all of us.

Clo

Clo,

Thank-you so much for the kind words. If you read my previous post to Susie, you'll see we've had a rough week. I didn't know what happened to your Son. A parents worst nightmare. The "sideline" is a very dark and lonely place when it's you own. I truly hope he's able to carry on with a productive life. Your Daughter as well. Are these heart issues treatable? Prayers coming your way.

Tom.
Posted 2/11/2024 4:58 PM (GMT 0)
Oh Tom, how awful for both of you!! Hopefully you both are on the mend.

Lets make a deal, you give us an update regardless of how she is doing. If she is doing good, a positive post is helpful to so many. If she isn't doing good, we can support you the best we can.
Posted 2/12/2024 11:41 AM (GMT 0)
LOL!!!

Thanks so much Susie,

Hope I wasn't too hard on you, but of course I'm sure you know I was joking about it all. It seemed like as soon as you asked, everything went sideways.

She seems to be handling the covid fine. As for me, and I'm not the dramatic type, it is the closest thing to death I can think of. I'm on Paxlovid now which seems to be working. After having my Daughter in emergency for 5 hours, then me in emergency for over 6 hours the very next night, we'll all pretty exhausted. As you know I'm in Canada, and you often hear that many are envious of our health care. I can tell you it's a complete disaster, and nothing compared to what it once was. Once again, I apologize for my twisted sense of humor.
Posted 2/12/2024 2:51 PM (GMT 0)
Hi, Tom:

The ultrasound that your daughter had is designed to see organs in the abdomen such as the liver, gallbladder, pancreas and spleen. There is the newer type of ultrasound that can see small intestines including the terminal ileum in real time at low cost. It is more widely used in Europe, but is gaining popularity in the US. They need the special ultrasound machine and the attending physician needs the training to do this. I know this is difficult in an ER setting. But that's the future of medicine.
Posted 2/12/2024 7:29 PM (GMT 0)
Thanks Paul,

That's really good info. and could be very useful. I'll inform my Daughter about this, and let her check it out with her GI.
Posted 2/13/2024 1:45 PM (GMT 0)
Hey Tom, no offense taken, lol. I just feel bad for you catching the virus!

I do agree with you about universal healthcare. Some here in the states think it would be great, however, they are not aware of the people that come to the states to get medical care. A friend of mine works for one of the leading university hospitals here, she does all of the intake of out country care, she says it's incredible. As it is now we already have a shortage of drs in every field, universal healthcare would make it worse.

Take care of yourself!
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