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Update about my hubs

Hello All!

Just wanted to update everyone (if anyone even reads this 😂) we absolutely love his new GI team. I say team because he has 2 doctors which is amazing. They get back to us immediately and in 1 months he's had a CT entography and loads of blood work, been approved for Entyvio and had his next 2 appointments set up. (His old doc hadn't even had a new med approved after 8 weeks of "trying" and didn't think a CT was necessary even though strictures were found in the CT 🙄) so we are pleased to say The least! His CT confirmed there's only 1 stricture and it's not bad, just needs monitoring and there's some mild inflammation in his TI (where his always has been) and said they will redo the scan after he's been on Entyvio for about 6-9 months or so to see what the inflammation is like and go from there. They said they weren't recommending entocort since he has zero symptoms and his labs are perfect, she said they are some of the best she's ever seen. They seem to think his crohns is somewhat of a "silent type" to a degree. Which is a blessing and a curse since he has no symptoms and hasn't for almost 5 years which is great but he has inflammation still so they want to monitor him more close than his old doc did (no scans or scopes for 5 years) to make sure it doesn't go crazy before symptoms appear and keep an eye on the stricture but said people can live with them for years and never have issues and they feel like the new meds will help resolve it but obviously will rescan to check after a few months. But I just feel so relieved to have a doc that's on top of EVERYTHING. And listens to us and answers any questions and does it promptly. Once again thanks to all that have helped and given advice!
 
Most excellent!
...its heartening to hear good news every now an then

I remember your postings from last year, and am super happy thing worked out well for you and your husband.

Having you on his team is a great blessing, and now with good and attenative health care team things are just going to get better n better


Thanks for the update!
 
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Great news!! Always good to have a medical team that listens and tailors treatment to the patient
Yes! It's a total night and day difference from what we've been used to. She actually did an entire abdominal CT to check all other organs just "to be safe" since Crohns or the meds can affect so much more as we all know. And it all came back great minus what I mentioned above. His old GI never did that even with pancreas inflammation seen 6 years ago on a CT about 3 months before diagnoses. And thanks to you for your wealth of knowledge!
 
Great news!! Always good to have a medical team that listens and tailors treatment to the patient
Also, are you familiar with anyone else having "more silent Crohns" ? I hadn't really heard it worded that way before. Makes me a tad nervous to a degree since he has inflammation but no symptoms.
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Also, are you familiar with anyone else having "more silent Crohns" ? I hadn't really heard it worded that way before. Makes me a tad nervous to a degree since he has inflammation but no symptoms.
Yes - Some people show symptoms more than others, I'm sure there will be some chiming in here. In my case, I remember my old GI always saying I was sicker than I ever appeared....in fact a visit to him (while I was still working, living life etc) usually ended up with a trip as a straight admit to the hospital for a week or so.....
 
Yes - Some people show symptoms more than others, I'm sure there will be some chiming in here. In my case, I remember my old GI always saying I was sicker than I ever appeared....in fact a visit to him (while I was still working, living life etc) usually ended up with a trip as a straight admit to the hospital for a week or so.....
Oh wow! That's crazy. Thankfully we aren't anywhere near that yet. Were you able to get it under control?
 
Oh. We also found that his doc had been prescribing entocort way wrong 🤦‍♀️ his old doc always said to take it for like 4 or 5 days for a flare. Well new doc found out and about flipped haha. She said no no...you taper and treat it like you do pred. Thankfully he hasn't needed it in almost 5 years but...still. sheesh. 🤦‍♀️🤦‍♀️
 

Lisa

Adminstrator
Staff member
Location
New York, USA
Oh wow! That's crazy. Thankfully we aren't anywhere near that yet. Were you able to get it under control?
I ended up going on Remicade about 16 years ago, which has taken care of the fistulas I had eventually developed.....still on it and doing pretty well...it's just the rest of my body that is starting to give me issues! :)
 
I ended up going on Remicade about 16 years ago, which has taken care of the fistulas I had eventually developed.....still on it and doing pretty well...it's just the rest of my body that is starting to give me issues! :)
Ugh isn't that the way it seems to go 🤦‍♀️ I'm so sorry but so glad your crohns has been managed at least.
 
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