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Ulcerative Colitis
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Posted 9/25/2018 9:35 PM (GMT 0)
Kara do you get up at night every 2 hours? Because that's what I'm dealing with right now.

I'm still bleeding too so I'm sure surgery would fix the constant blood loss.

I don't have any antibiotics for the UTI. Yesterday I was supposed to see my GP but I didn't go. My GI nurse is actually going to call in antibiotics. And yes she finally filled the Xeljanz too.
Posted 9/25/2018 10:29 PM (GMT 0)
No, not that often, but I get up once or twice depending on what I ate and when. Better to eat earlier and lighter if you don't want to get up. I don't take any drugs, so i don't try to prevent it. I get up to use the bathroom to pee most nights anyway.
Posted 9/29/2018 7:40 PM (GMT 0)
I didn't get an email about this thread and I just saw this. Well I get up multiple times at night and I think this is not good for my overall health. Just having the inflammation gone from my system will help me improve.

I now officially lost 10 kg which is 22 pounds. Almost daily I have nervous breakdowns where I just cry and cry because I don't see an end to this and I get weaker each day. Walking from the car across the parking lot into the office is hard. I can't do chores around the house. Even showering is difficult and I already have a seat in the shower so I don't have to stand the entire time.

I was supposed to see my GI on Wednesday but I was running late and I called ahead to tell them I'll be late. But they called me back saying that they can't see me and I should come in next day. I was already missing hours at work because of this appointment. Having another one right after this would have made me struggle to make up my hours too much. Two weeks ago I had to do this and I was so sick and weak after. So we made an appointment for Monday because it's my day off.

They put my xeljanz on hold until I can go to the appointment. I think that's pretty harsh considering how I am in dire need of treatment.

My GI also wanted me to get a shingles vaccination but my state doesn't allow it for people under 50 years. I'm so stressed out about everything.
Posted 10/1/2018 9:02 AM (GMT 0)
Andrina, have you ever had fecal transplant? I've read that it is now available in Czech Republic which is a great thing because Slavic people are much less prone to uc. If I ever considered ft, I'd surely do it in Prague
Posted 10/2/2018 12:20 PM (GMT 0)
My GI is talking about surgery now and he will get me in touch with a surgeon.
Posted 10/2/2018 12:29 PM (GMT 0)
I think that is the right avenue for you now Adriana. You've tried nearly everything without much (if any relief). Do your homework, make sure you work with an experienced surgeon who has done many j-pouches. What state do you live in?
Posted 10/2/2018 12:38 PM (GMT 0)
Utah
Posted 10/2/2018 1:12 PM (GMT 0)
Hmmm... I wonder who's good at colorectal surgery out that way? You'll have to let us know who they suggest. There's a mayo clinic out of Phoenix AZ, if you're willing to travel...
Posted 10/2/2018 1:58 PM (GMT 0)
No way I'm going to Phoenix.

This is the surgeon who was recommended to me

/intermountainhealthcare.org/find-a-doctor/k/kim-h-tae/

How long after step one does recovery take? I want to be able to work as soon as possible.
Posted 10/2/2018 3:38 PM (GMT 0)
Step 1 was hard for me. Not only was I sick going into it, but it's also a big step. Will you do 2 steps? With 2, it's bigger than with 3... I was working from home after a week, but if I actually had to go into an office, i would have needed a couple more weeks to heal before making the trip. It also depends if you do surgery open or laparoscopic. Laparoscopic is less invasive. You have a desk job, so you should be able to get back to it relatively quickly, but you can't really guarantee anything. There is always a chance of complications. I was lucky. I am excited that you're going to consult. Are you going to try xeljaz in the mean time? Maybe it will get you back to 100% quickly and you can save surgery for when you have no options.
Posted 10/2/2018 3:44 PM (GMT 0)
Kara was yours laprascopic?
Posted 10/2/2018 3:47 PM (GMT 0)
Yup. I am sure yours will be too!
Posted 10/2/2018 4:04 PM (GMT 0)
Yes me too. I don't know how many steps they'll do but I'm waiting for them to contact me and I'll ask.
Posted 10/2/2018 5:25 PM (GMT 0)
Let me know what you find out! I am 100% here for you, here, message, phone... smile

I think open is usually cases where people had prior abdominal surgeries, but some surgeons prefer it... I would imagine you will be a candidate for laparoscopic and maybe even 2 steps. I thought I would get 2 steps but no luck. I guess i was too sick for too long leading into the surgery, & my surgeon prefers 3.
Posted 10/2/2018 5:30 PM (GMT 0)
Two step would be creating the J-pouch right? I don't see why they cannot do it with the first step.
Posted 10/2/2018 6:39 PM (GMT 0)
In a 1-step process:
Step #1 is removal of the large intestine, creation of a j-pouch, and you leave with a functioning j-pouch.

In a 2-step process:

Step #1 is removal of the large intestine, creation of a j-pouch from the end of the small intestine, and you leave with a loop-ileo and appliance.
Step#2 is the takedown and attachment of the j-pouch, and they remove the loop-ileo. You leave with a functioning j-pouch.

In a 3-step process:

Step #1 is removal of the large intestine, creation of an end-ileo from the base of the small intestine.
Step #2 is the creation of the j-pouch, and you leave with a loop-ileo.
Step #3 is the takedown and attachment of the j-pouch, and they remove the loop-ileo. You leave with a functioning j-pouch.

Loop-ileos are temperamental. End-ileos are easy-peasy-lemon-squeezie. Number of steps is based on Do you have a healthy weight? Are you on steroids? Are you on biologics or immunomodulators? 1-steps are rare for IBD patients, 2-steps when steroid and biologic/immunomodulator free. 3-steps when you are sick, low weight, on steroids, and on biologics.

Post Edited (iPoop) : 10/2/2018 12:43:21 PM (GMT-6)

Posted 10/2/2018 6:46 PM (GMT 0)
Why are end and loop so different?
Posted 10/2/2018 6:51 PM (GMT 0)
End-ileo is attached at the end of the small intestine utilizing it's whole length, whereas loop-ileo is attached much, much higher up that same intestine. When less of your intestine is allowed to be used, you get much quicker transit times, less formed output, more acidic output for skin irritation, etc etc. The j-pouch is an end-attachment as well, and is easier than the loop-ileo.
Posted 10/2/2018 10:10 PM (GMT 0)
I just saw your edit. I wanted to ask what is temperamental? Does it mean more complications?

I'm currently on Uceris and Cortenema. I will start Zeljanx. I lost 10 kg/22 pounds and currently at 126 lbs. I don't know how healthy this is but what you say makes sense. I would just be glad to be done with the colon for now.
Posted 10/3/2018 12:21 PM (GMT 0)
Temperamental means expect more annoyances, not complications. The output of the end-ileo is more predictable and spaced apart, so stuff like appliance changes and showers can be done without any output from the stoma occurring. Whereas, with a loop-ileo, you might have the appliance off for a change and then suddenly have output without warning, which might foul-up the process before everything is seated and sealed, and irritate your unprotected skin. Another example, a poster said he/she could shower without their appliance on with an end-ileo and there'd be no output during that timeframe. However, the end-ileo meant you had to shower with an appliance on, as output was almost certain.
Posted 10/3/2018 12:56 PM (GMT 0)
My GI also wants an xray done because the CT showed that the sigmoid and descending have a 'stretched' appearance. I don't know what that means but he did mention the Megacolon word.
Posted 10/3/2018 12:59 PM (GMT 0)
Toxic-megacolon? Typically, high fevers are associated with it. Are you still having fevers after discontinuing the simponi (at least I think you were discontinuing it)? I know you had a high fever, and then some lower temp fevers thereafter. I hadn't thought of that, but seems possible with the fevers...
Posted 10/3/2018 1:04 PM (GMT 0)
This morning I had 100 something. Would I still be able to pass stool with a Megacolon?
Posted 10/3/2018 1:14 PM (GMT 0)
I believe so. Not really read much about megacolon here over the years though, kinda rare.
Posted 10/3/2018 2:44 PM (GMT 0)
Well I just went to the xray and the report is already ready. No Megacolon.
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