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My day by day Cleveland/surgery updates

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Ulcerative Colitis
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Posted 11/16/2015 11:56 PM (GMT 0)
Day 1 at Cleveland clinic, the trip here (4 hours away) was brutal. My parents drove me but We had to keep stopping for bathroom urgencies. Luckily I had no accidents in the car. I woke up today with severe joint and muscle pain for whatever reason, the heels of my feet feel bruised to the point I can't even walk, that plus this external hemmeroid is making things pretty miserable and almost impossible to move (doesn't seem like they wanna remove it). When I first got my room here they checked my vitals and my heart rate was 150 and blood pressure was very low so by protocol they had a mob of doctors and nurses come in the room at once, running tests and stuff to make sure I'm ok and to try bringing things to normal. My heart rate came down to 120 but I don't think it's gonna drop too much more than that, they do seem concerned about it though. The immediate attention and care here is great. I start the feeding IV tomorrow, the reality of the surgery happening is starting to get a bit scary but I know it's the right move. I'll update again soon.
Posted 11/17/2015 12:46 AM (GMT 0)
Good thing you are there! I hope they get you in good shape for surgery ASAP. Keep us updated, we are all rooting for you.
Posted 11/17/2015 1:03 AM (GMT 0)
good luck
Posted 11/17/2015 1:31 AM (GMT 0)
Looking forward to seeing more updates. :)
Posted 11/17/2015 2:54 AM (GMT 0)
Thanks for the update. I hope you are feeling a bit better.
I know the prospect of surgery is scary but you will feel so much better after it.
Do you know if they are doing enteral( stomach tube) or parenteral ( bypasses digestive track usually through vein) feeds
Posted 11/17/2015 12:35 PM (GMT 0)

Dikid said...
Thanks for the update. I hope you are feeling a bit better.
I know the prospect of surgery is scary but you will feel so much better after it.
Do you know if they are doing enteral( stomach tube) or parenteral ( bypasses digestive track usually through vein) feeds

The parenteral. I think it's called TPS.
Posted 11/17/2015 1:37 PM (GMT 0)
Parenteral is good because most likely it will not bother you at all. They give vitamins as well as a very balanced diet and they will adjust according to your labs
Hopefully it will give you strength back
Posted 11/17/2015 2:22 PM (GMT 0)

Dikid said...
Parenteral is good because most likely it will not bother you at all. They give vitamins as well as a very balanced diet and they will adjust according to your labs
Hopefully it will give you strength back

Yeah hopefully, I should be getting it within the hour, doesn't sound to pleasant with how deep it has to go though
Posted 11/17/2015 2:31 PM (GMT 0)
Are they giving you a pic line? You can ask them to numb for placement
Posted 11/17/2015 5:51 PM (GMT 0)
Good thoughts with you during surgery and recovery. Looking forward to your updates and you feeling better soon.
q
Posted 11/17/2015 10:05 PM (GMT 0)
Second day of Cleveland update..
The pic line is in, they're starting it at 10pm and gonna run it right up until the surgery, so for about a week. I have excruciating pain from my waist down which started around Sunday . Can't bend my legs straight, walk, or do much of any kind of movement. My knees, ankles, and heels of my feet are swollen so they ran an ultra sound test on both my legs to check for a blood clot. I probably won't find out the results until tomorrow. Very impressed with the immediate care here though. They treat everyone like VIP status.
Posted 11/17/2015 11:03 PM (GMT 0)
Thank you for posting your day-by-day updates. This is and will be such a great resource for those of us contemplating surgery. You're in my thoughts and prayers and sounds like you're in great hands.
Posted 11/19/2015 6:48 PM (GMT 0)
Third day of Cleveland update..
No blood clot but still a lot of pain in my joints and muscles from waist down, still really bad hemmeroid pain and still can't walk due to these problems. They may remove the hemmeroid during surgery, otherwise they don't seem interested in doing anything now for it and the joint and muscle issues they're relating to colitis symptoms. My resting heart rate is still above the 100's even after taking metoprolol here but they're relating that to colitis as well. still hooked up to the TPN bag getting my body stronger for the operation. Everyone's great here.
Posted 11/19/2015 7:20 PM (GMT 0)
Hang in there! Glad you are getting stronger. Have they set your surgery date yet or are they waiting for your health to improve?
Posted 11/19/2015 7:29 PM (GMT 0)
Oh wow....I hope the hemmie will be removed for you to lessen the misery of you healing afterward.

Are you on any pain medication?

q
Posted 11/19/2015 9:43 PM (GMT 0)
Surgery is on Tuesday of next week. I do have pain med as needed yes. Not sure if they'll have to delay the date based on my blood work, hopefully not.
Posted 11/19/2015 9:45 PM (GMT 0)
Good luck thanks for the update I'm watching your story closely and rooting for you
Posted 11/23/2015 3:06 AM (GMT 0)
6th day of Cleveland and I still can't walk. My ankles are swollen, my bones and muscle are giving me the worse pain I've ever felt. I feel like my bones are broken, I can't walk or stand because of the pain. They checked for a blood clot but didn't see anything, it's the only test they ran and it's not being treated with anything. Tomorrow I talk to the surgeon for the first time and given my condition, I can't imagine NOT pushing back the date of the surgery, especially since walking is a big part of healing afterwards. Still excruciating hemerhoid pain, no cream has helped, I've had it for a month now. Overall I don't think I'm surgery ready, but my pains don't show any sign of easing off. If anyone has had similar joint and muscle pain to the point of not being able to walk, I'd like to hear the possibilities of what it could be. Will update tomorrow.
Posted 11/23/2015 3:26 AM (GMT 0)
Wow, that's crazy. I hope your pain improves quickly.

I've never heard of UC causing so much pain that walking is impossible. Were you ever on Remicade? Several here have had terrible joint pain from Remicade.

You said the debilitating pain started last Sunday. What changed that day or the day before? Any new meds? The TPN? Did you stop taking something? You need to figure out if this is caused you something other than UC.

It's so weird, if you were pretty much anywhere else except the Cleveland Clinic, I'd say check out of the hospital and get a second opinion. Even at the CC, don't hesitate to speak up if you think they're wrong.
Posted 11/23/2015 3:29 AM (GMT 0)

kiptyn said...
Wow, that's crazy. I hope your pain improves quickly.

I've never heard of UC causing so much pain that walking is impossible. Were you ever on Remicade? Several here have had terrible joint pain from Remicade.

You said the debilitating pain started last Sunday. What changed that day or the day before? Any new meds? The TPN? Did you stop taking something? You need to figure out if this is caused you something other than UC.

It's so weird, if you were pretty much anywhere else except the Cleveland Clinic, I'd say check out of the hospital and get a second opinion. Even at the CC, don't hesitate to speak up if you think they're wrong.

I always speak up, I've told every nurse and Doctor the same thing and they just say that it's probably from the colitis which will ease off with the surgery. Yes I've been on remicade, last dose was October 5th
Posted 11/23/2015 3:40 AM (GMT 0)
Glad you're someone who speaks up. Not everyone is able to do that.

I cant remember the user name of the person who had terrible joint pain for Remicade but search this forum for joint pain and Remicade......Actually, I think his name was Thoreau. Take a look at his posts.

Maybe the pain is from Remicade withdrawal? Or steroid withdrawal? Anxiety?

I hope you get it figured out and are in surgery ASAP.
Posted 11/23/2015 3:46 AM (GMT 0)
I have had periods that my joint pain was so bad I could barely walk
thankfully that is much better now
and I dont have that issue too much
I would ask for some kind of pain medication to help
ask them to see a rheumatologist
hope you get better soon
Posted 11/23/2015 11:27 AM (GMT 0)
I sure hope you get your surgery soon and that you feel better afterwards. I agree that asking for a rheumatologist consult would be good, they are usually better about digging deeper into situations than other docs.
Posted 11/23/2015 3:19 PM (GMT 0)
I am interested to see what the surgeon says. Are you on remicade? It gave me joint pains so bad I could barely move. Luckily for me, they would come on at night and usually disappear during the day.
Posted 11/23/2015 3:28 PM (GMT 0)
I haven't taken remicade since October 5th so my next would be December 5th which I obv won't be doing
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