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Where is Keith aka KS1905?

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Ulcerative Colitis
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Posted 4/2/2024 10:12 PM (GMT 0)
I've been thinking lately that we didn't hear from him for a good while-- so I hope that all is well and he's just pleasantly busy since the winter holidays. / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 4/3/2024 3:23 AM (GMT 0)
I think he reads and pops in occasionally.

I sure do miss his input.

Clo
Posted 4/4/2024 12:09 AM (GMT 0)
Maybe he is having technical problems. That happened to me and I just stopped even trying read for a long time. Everything seems to be working fine now, so if that is what was keeping him away hopefully he will try again soon.
Posted 4/7/2024 10:01 PM (GMT 0)
Hey Old Hat,

I don’t come around much due to the technical issues here.

I just switched up my meds from Stelara to Rinvoq. I haven’t been feeling so well since I got Covid last year, we upped my dose to of Stelara to every 28 days and it didn’t help much.

I went for a scope (looked good) and then an MRE (MRI with Entraphy) and it showed a small section with some narrowing from inflammation.

This is my third day on Rinvoq and I’m already starting to feel better. I wonder how I’ll feel as the Stelara leaves my body over the next 3-6 months.
Posted 4/8/2024 12:17 AM (GMT 0)
Keith,

I was sorry to read that you have been struggling since last year. Covid is such a a wicked virus. I hope your new med puts you back into remission.

I have missed your input and am glad you posted to let us know how you are doing.

Just a side note.... My daughter really struggled after covid.... She's on heart medication now.... So if you are feeling fatigued keep that in the back of your mind. I know I tend to blame everything on IBD until I suddenly realize it's not. (And with me... Sometimes that's not until I have an Oh Sheet moment.

Crossing my fingers on your new meds....

And please let us know how it goes.

Clo
Posted 4/8/2024 9:48 PM (GMT 0)
Keith -- are you still having technical issues on this site? I just started posting again a couple weeks ago and it has been fine now. Sorry to hear of the lingering Covid problems. Hopefully Rinvoq will kick in and get you feeling better soon!
Posted 4/9/2024 3:45 AM (GMT 0)
I think that I accepted the status quo for too long when I wasn’t really in remission and I didn’t realize how it was affecting my daily routine or even my quality of sleep. I didn't get up at night to go to the bathroom but the freight train sounds of my stomach didn’t allow me to sleep as well as I should have been sleeping.

I just took my fourth dose and let’s see if it continues; I feel pretty good right now.
Posted 4/9/2024 8:30 PM (GMT 0)
Gads! I'm so sorry to read that you needed to switch maintenance meds, Keith. Hopefully Dr. S. will keep you on top of this issue. Are you still consulting him? Lately the tech situation here has been acceptable; it seemed to improve following Michellejc's intervention with mgmt. Definitely keep us posted as your time permits; we've missed you and your input on many subtopics here on the forum. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 4/18/2024 1:42 AM (GMT 0)
I’m still a patient of his, just getting to the city is getting more and more difficult with all the traffic. I grabbed a hotel the last time couple of times that I had visits with him just to keep the stress down; I park my car at the hotel and took a Lyft over to the hospital. I ended up late to an appointment a previous time due to traffic and it aggravated me; his team stayed late on a Friday to see me as their last patient for the week because I was late.

Now, I just make a day or two of it and staying in Midtown is fun. I stayed at the newly renovated Thompson Central Park the last couple of times. It’s a fun area with great food and things to do.
Posted 4/18/2024 5:18 PM (GMT 0)
Good that you found an enjoyable solution to the lateness problem. I agree with you that traffic congestion has grown worse; crosstown was always iffy but now I factor in an additional hour (minimum) to arrive at med office visits on time. A couple years ago one of my longtime doctors commented ruefully about relocating office 30 blocks uptown to avoid the annual autumn UN General Assembly traffic crunch-- only to get stuck in bumper-to-bumper a block away from new office as our POTUS booked into an upscale hotel nearby-- 'cause he was speaking at the UN!!!!! To get around quickly M-F one has to be the President with a motorcade. *** In any case, it's great to have you back here on HW!!!!! / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 4/19/2024 12:20 AM (GMT 0)
Guys I had my 3 colorectal surgeries at NYP plus 2 incisional hernia surgeries there also.
Went in night before to hotel for all of them since I didn't want to deal with traffic going into city from Long Island in morning. And I'm in western Long Island.
It's at least an hour on a good day getting into city and across the 59th st bridge.
Do I want that stress morning of surgery???
Absolutely not.
Wise choice Keith.
My brother is in White Lake up by you so on a good day into city I'm quessing 2-2 1/2 hours.
2 different hotels stayed at on York Ave.
Wise decision
Good luck guys
Posted 4/19/2024 7:18 AM (GMT 0)
It takes me about an hour and 45 minutes if I’m not driving with the weekend traffic. It’s only about 90 miles. If I time it right and get lucky then I can get over the GWB without much traffic.

I just use my credit card/hotel points & loyalty program to get the hotel room; I get free parking and breakfast with the room. No cash out of pocket so it’s hard to pass up.
Posted 4/19/2024 10:47 AM (GMT 0)
Keith, I sure hope Rinvog works for you, it seems to work for so many on here. It sounds like you have a good plan on accessing your care too.

about the technical issues here, don't get me started, lol. Long story short when they tried to update it was like switching from a stripped down VW to a Rolls Royce, it just wasn't possible. HW is running on it's original software system. A team was assigned to handle HW & unbeknownst to the owner many of those people quit. They left us high & dry. The system had another nervous breakdown this week, I sent an email to the admin about it, never got a response back. We have to keep our fingers crossed that we don't have too many glitches.
Posted 4/19/2024 3:20 PM (GMT 0)
Hey Keith. Wanted to see how the first month on Rinvoq is working for you! I am always curious how others handle that med. I just saw a cardiologist who isn’t okay with how much it has raised my cholesterol. He said he doesn’t think I should stay on it long term. I was hoping for a different answer than my GI. They both feel it isn’t a safe long term med for me. From all my reading, it seems this rise is from my body trying to protect itself from Rinvoq. Cholesterol goes up in times of stress and illness so it seems like my body is in this “safety mode” while on the drug even though I am in clinical remission.
Posted 4/20/2024 1:47 PM (GMT 0)
Good deal Keith. Not too bad travel time.
I think I mentioned here before that Dr Shukla (my surgeon)moved to Northwell up in Westchester (bummer).
I had my hernia repaired by Dr Pigazzi last January at NYP.
He did a great job.
1st hernia was Dr Otterburn(plastic surgeon) from NYP.
Hopefully I'm not paying the rent at NYP anymore.
Pigazzi put full mesh covering total front of stomach.
Dr Shukla used my scar from Spleen surgery(October 77-football injury) which goes from below belly button to top of stomach for colorectal surgery. So I had 2 incisional hernia(lucky me).
Any of you guys that have had colon removed get kidney stones???
I had to have few procedures bc of not having a colon.(kidneys need liquid to filter them. No colon very little liquid entering body).
Posted 4/20/2024 6:19 PM (GMT 0)

Bacon Girl said...
Hey Keith. Wanted to see how the first month on Rinvoq is working for you! I am always curious how others handle that med. I just saw a cardiologist who isn’t okay with how much it has raised my cholesterol. He said he doesn’t think I should stay on it long term. I was hoping for a different answer than my GI. They both feel it isn’t a safe long term med for me. From all my reading, it seems this rise is from my body trying to protect itself from Rinvoq. Cholesterol goes up in times of stress and illness so it seems like my body is in this “safety mode” while on the drug even though I am in clinical remission.

My GI isn’t worried about Rinvoq but I’m still going to request lipids tests with my regular bloodwork. I’ll probably get some bloodwork done soon, I’ve only been on it for a couple of weeks.
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