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Ulcerative Colitis
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Posted Yesterday 12:37 AM (GMT 0)
What a roller coaster your operation has been. Thank you for posting what you have gone through, no doctor would ever be able to describe this. Although you are a n=1 individual case it says a lot about what people go through to subdue the UC beast through surgery.

Hope your ordeal is almost over and you achieve a peaceful recovery soon.
I'm also in South (west) Florida. Hope you get out soon and can enjoy the season and nice weather.
Posted Yesterday 12:38 AM (GMT 0)
Holy craaap....I was going to ask if you were needing more surgery. I guess it's a real possibility.
Hope that it can be dealt with more quickly than just putting in a drain.

This is so scary to hear what you've been going through. It's great your nurse does what she does. Please let us know how tomorrow goes with your surgeon.

q
Posted 12/4/2015 12:22 AM (GMT 0)
and now I have a 100.7 fever
Posted 12/4/2015 1:58 AM (GMT 0)
are you home or at the hospital?

q
Posted 12/4/2015 2:12 AM (GMT 0)
You really are having bad luck. I wonder if a 3 step would have been better in your case :(
Posted 12/4/2015 2:16 PM (GMT 0)
I'm at home, my nurse seems to think I have a Candida overgrowth due to the heavy antibiotics I've been on, it fits soo many of my symptoms. Overall sick feeling, fatigue, coated white tongue, mucus in the throat, heartburn, gas, cravings, Nausea, burping after meals, headache. My home nurse is calling my surgeon and trying to get oral diflucan to see if that will help
Posted 12/4/2015 3:44 PM (GMT 0)
I have never heard of candida causing a fever (or burping, nausea, heartburn, mucus). I had a really bad one after my hospitalization too. My throat had white spots all over it, it was gross. If you look up thrush on google images, that is exactly what mine looked like. White spotty. I actually didn't feel that bad other than my throat and feeling tired - but tired is normal for me. I am always tired. I took about a week of diflucan to get rid of mine. I don't think diflucan can hurt but I would definitely be worried about the infection resurfacing with the fever. Please make sure you get checked out if you're still hot.
Posted 12/4/2015 7:42 PM (GMT 0)
Worth to try the diflucan. Keep us posted.

q
Posted 12/4/2015 10:54 PM (GMT 0)
I'm running fevers on and off all day, low grade. My surgeon said keep taking tylenol and if I get worse go to the emergency room on the weekend, if not he'll see me monday. Doesnt do me much good for relief.

Candida has a wide array of symptoms. if it gets into your bloodstream it can definitely cause fevers. It can effect multiple areas of the body. Your digestive system, your mouth, your skin, respiratory system, eyes and ears, urinary, immune system, weight and others. This site lists some good information on it...

http://www.thecandidadiet.com/candidasymptoms.htm
Posted 12/5/2015 3:37 AM (GMT 0)
Don't wait till Monday.

q
Posted 12/6/2015 12:44 PM (GMT 0)
Hey everyone. I've been in the ER since yesterday and I'm glad I did. I have a bad infection and I'm on a sepsis alert. They are pumping me full of fluids and 4 different antibiotics. Not much relief yet. My drain goes back in today. I'm still waiting to talk to the infectious disease doc this morning when the blood cultures are done
Posted 12/6/2015 1:13 PM (GMT 0)
Wow, very glad you went. Notsosicklygirl had sepsis, very scary...
Posted 12/6/2015 4:49 PM (GMT 0)
OMG...relieved you went to the ER. Sepsis is scary stuff. If they're not knowing where exactly the infection is (because it can settle in areas not expected)...there's a special scan with a contrast that will light up the area/areas. Considering what you've been through, maybe push for that?

Hopefully, the 4 antibiotics will get this done once and for all.

Please keep us updated how you're doing.


q
Posted 12/6/2015 5:01 PM (GMT 0)
Yikes! Hope this wipes out the infection and you feel better.
Posted 12/6/2015 5:17 PM (GMT 0)
I am so thankful you are there. I didn't want to beg you to go but I was worried. Sepsis is really serious and you want to do anything to avoid it. Mine was from general immune compromise, from UC meds, so it didn't happen how you're describing, but what you describe sounds serious so it's better to be at the hospital and safe. They tested for everything in my case and found nothing known... They ended up having to give me just about everything available to wipe out whatever it was. They still do not have a positive result for what it was that I had. Mine was happening in my lungs but took over my entire body by the time I got help.
Posted 12/6/2015 5:40 PM (GMT 0)
Kara send your request again please my fat fingers deleted your request
Posted 12/6/2015 5:47 PM (GMT 0)
Well my white blood cell count came down. My headaches are far better. They aren't doing the drain till tomorrow now. The severe pain in the one spot in my abdomen is fluid collection. I'm still waiting on blood culture results. They are bombarding me with fluids and antibiotics. I just got a little food then it's NPO after midnight.
Posted 12/6/2015 9:03 PM (GMT 0)
I sent it again :) I am happy your WBC is down, that's a good sign.
Posted 12/6/2015 9:27 PM (GMT 0)
Just got my reversal, good luck!
Posted 12/7/2015 12:01 AM (GMT 0)
Well they ended up doing the drain today after all. He wasn't going to because he wanted contrast in my bowel so he could see it. Well, he barely touched the one painful spot and it about sent me through the roof. At that point he said we need to do it. For that much pain to be caused by such a light touch the fluid has to be infected bad. That drain procedure sucked with how bad the pain was in that area! I was swearing left and right it hurt so bad. They did get a lot of pus out and sent it for cultures. Now it's hard to tell if the pain is still there or it's the procedure pain
Posted 12/7/2015 3:20 AM (GMT 0)
That sounds awful! The stuff we go through is unbelievable. On the positive side, it sounds like you will be feeling a lot better now that you're able to drain the infection. I hope the culture gives some answers. Hopefully it clears up fast so you can get back on track to healing. You've really hit every possible road block!
Posted 12/7/2015 3:05 PM (GMT 0)
Well, spoke to my surgeon this morning, apparently there is a leak in my bowel that they can't find. Tomorrow he is going to test my Jpouch with an X-ray and rectal exam. If the leak is there obviously that has to be surgically repaired. If it's not there, within a week or two I will be having surgery not only to search for the leak but it would also be to remove my ostomy bag. Idk how long I'll be here, if ill be released before any surgery, I'm sure I will. I also have to figure out what they want to do about the IV antibiotics I need to be on. Normally it's a picc line like I had before that caused a clot. I'm asking for another solution, even if it means coming to the hospital each day to their infusion room to get them. That's where I stand now, I am feeling much better, I'm being pumped full of potent antibiotics.
Posted 12/7/2015 3:40 PM (GMT 0)
Crazy. If reconnection will correct this, that would be great. I had the xray test, probably the one you're going to have. They put some kind of contrast into your pouch and take xrays. This gives them a nice picture of the pouch. They tilt you to a bunch of angles. Mine was the day before my reconnection. Why can't they just use an IV if it's only a week? I had an IV for longer than that...
Posted 12/7/2015 5:51 PM (GMT 0)
OMG...hope the x-ray helps find what exactly is going on and it gets fixed asap. It's difficult to hear all that's happening with this process....
Seems the leak must be right at the pouch connection somewhere? If not...then how would it be in the ileum?

q
Posted 12/7/2015 7:07 PM (GMT 0)
Idk what steps they will take to find it if it's not in my pouch, I'll have to ask tomorrow. If it's not in my pouch at least I get the bonus of a reversal early lol if they are going in to look for the leak. I have a list of questions for him tomorrow when he comes to do the rectal exam. The X-ray will be a barium enema. I hope to have more answers shortly.
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