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IleosTony
(@ileostony)
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Posts: 160
October 18, 2019 7:29 pm  

Liza, do you have a nurse liaison from Abbvie? I got a call once every three months or so from mine when I was still taking the medicine and could call her when I needed help. The nurse should be able to tell you if you're injecting the medication into a place that might render it ineffective or what kind of effect you should be seeing after taking it for ten months, assuming the drug is going where it should be. 

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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IleosTony
(@ileostony)
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October 18, 2019 7:36 pm  

One more thing, Liza. Take advantage of that offer on that class or anything else that helps you get started on self employment. You have the time now, and it can be so very hard to do it if you have a full-time W2 employment position. You seem motivated enough about that to perhaps find yourself regretting not seizing the opportunity later.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
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October 18, 2019 9:33 pm  

Hi Tony, 

I had a Humira ambassador for several months who was a nurse. Then she turned me over to someone else I talked to once or twice. I probably have both numbers in my phone somewhere. 

I definitely plan to apply for the self employment program right away. I’m not sure of the criteria to qualify, and there is a cost, but it seems worthwhile to me. 

-Liza
“May your day be bright and your bag be light.”


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LK
 LK
(@dlkfiretruck)
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Posts: 636
October 18, 2019 11:40 pm  

Thank you for sharing that Liza. I've learned something today and I appreciate your openess! One of the worst things in life is feeling alone dealing with health issues. You are not alone, we are not alone, not here at VO! Thanks Eric! Liza, you are one tough cookie!

Linda


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sjlovestosing
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Posts: 314
October 19, 2019 1:48 pm  

Hi Liza,

Ditto on what Linda said. Don't ever feel like you can't vent or be honest about things. I realize that of all the people who have ostomies on this web site, I really cannot complain - all of you have gone through so much more than I. I give you a great deal of credit - all of you - for your fortitude and positive outlooks despite your circumstances. You are inspirations to me every one of you!

God bless,

Stella


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SqueakyandLiza
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Posts: 275
October 20, 2019 2:24 am  

Thanks Stella!!

Everyone here experiences feelings of loss, and what you have gone through is no less significant than the rest on us, and you are just as entitled to feel badly about your loss as the rest of us. ❤️

I was just feeling like I was getting over my cold and feeling pretty good, well enough to go out walking. Then this evening, after my oxygen, on our way home, I started feeling chills and a headache coming on. 🙁 This feels totally different than the cold did. I am freezing, in bed under extra blankets, and feel like I have a fever. I just drank some cold water, so going to hold off on taking my temperature. I had a flu shot about 6 weeks ago. I just hope it isn’t an infection. 🤞 The headache makes me think flu. Ugh. 

-Liza
“May your day be bright and your bag be light.”


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LK
 LK
(@dlkfiretruck)
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October 20, 2019 7:16 am  

Liza, this sounds like the bug that hit my son & l a few weeks back. We were  both  flat out exhausted & beaten to bed from this thing.  If you can't get to the GP, call the office and ask if this is going around so they are at least aware of it for other patients.  Get the rest  and fluids you need because  if it is that bug, it was up to 5 days & the fatigue part of it is nasty. We both had fevers we were dizzy too, I was nauseated, but not puking, he was. Up your fluids and stay in bed  I am praying for  and I'm sure you know Stella is too, so hang in there. Butt...if in doubt check it out!  Do not risk anything with your wound still needing to heal. If  it's  the flu shot,  at least you have it on board. I still need  to  get mine.  Stay in bed and sleep it off, that  was how we got thru it. (Hang  in there you young whipper snapper you! Lol.) I'm Hoping for a good outcome for you Get better soon!   

Linda


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SqueakyandLiza
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October 20, 2019 7:47 pm  

Thanks Linda, 

I’m starting to worry now that it might be an infection causing the fever. During the night my left butt cheek started hurting. My husband looked at it this morning and he said it was red and inflamed. It is reminding me of when I had the abscess 12 years ago. The pain got worse every day until I couldn’t even sit. Urgent care just made the pain worse. Eventually it burst and I spent the better part of the year dealing with it—2 surgeries to put in drain tubes and hundreds of dollars worth of “butt pads”

I will definitely call the doctor if it is still not any better tomorrow. Not sure who to call though. My primary care doc, the colorectal surgeon’s assistant, or the GI??  Ugh!!

-Liza
“May your day be bright and your bag be light.”


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LK
 LK
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October 20, 2019 9:20 pm  

Hey Liza, let's talk about this for a minute. This Seton ring goes through your butt cheek right? You have been walking more, it is likely that walking has irritated the area, and you could very possibly be dealing with a brewing infection. Your fever speaks  of your body trying to fight an infection, and it may need some antibiotic help to win the battle. seriously believe you should nip this in the butt  as soon as possible. Pun unintended, and get Tom to take you to emerge if you are unable to reach one of your doctors tonight. Personally, I would call 

All 3 all and see who calls back  first. I don't know what you can do in the states but if you have a phone number to one of your doctors I would certainly call them oh, but I would not recommend you wait until tomorrow morning 12 hours for an infection to brew is 12 hours it succeeds. Your immune system is compromised by  a few issues right now...you're cold your open wound your fistula, and your seton ring. You are stacking your deck, and after what happened a year ago I do not think you should wait till tomorrow morning. Please seriously consider this and let us know what you've decided to do okay. Best wishes and prayers.

Linda


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IleosTony
(@ileostony)
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Posts: 160
October 20, 2019 9:34 pm  

Hi Liza,

 

I have to agree with Linda here. I had a similar problem a few years ago and made the mistake of waiting to call a doc. It turned into a surgery under general anesthesia to drain a huge abscess, i.v. antibiotics, and some seriously character-building pain. Being on the Humira is also a consideration. I encourage you to ask your GI doc if it's okay for you to be taking it while you have the infection, especially if you're nearing the time for your next dose. I encourage you along with Linda not to wait.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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SqueakyandLiza
(@squeakyandliza)
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Posts: 275
October 20, 2019 11:17 pm  

I’m sorry if I have hijacked the hyperbaric thread with other issues. 

Linda-the original abscess and now the seton ring are on my right cheek. This new inflammation and soreness is on the left cheek. So much for having a half-perfect bum. 😂😂😂

If it isn’t better in the morning, I will call my doctor. 

Tony-thanks for the advice on the Humira. My next dose is scheduled for Wednesday. I have already left one message for the GI nurse about following up on a blood test they did, so I will follow up with them tomorrow too. 

-Liza
“May your day be bright and your bag be light.”


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SqueakyandLiza
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October 22, 2019 1:43 pm  

Hi Linda and Tony,

My primary care dr was out yesterday so they told me to go to urgent care. The bum pain was a little less yesterday, and less still today, so I’m going to chalk it up as a fluke and just keep an eye on it. It is definitely not following the trend of the other abscess which worsened considerably each day. 

Thanks both for your concern and advice!!!

-Liza
“May your day be bright and your bag be light.”


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IleosTony
(@ileostony)
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Posts: 160
October 22, 2019 1:48 pm  

Hi Liza,

 

It's a relief to hear that what looked like was going to happen isn't. I would still ask the GI specialist about the Humira, since you were running a fever and do have the other clinical signs you described that indicate possible infection. If your fever has gone down, then the doc will probably give you the okay to go ahead and take the Humira, but the immunosuppressive properties of the drug are quite significant, so reporting it and asking about how to proceed is a good precaution to take. Keep feeling better.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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sjlovestosing
(@sjlovestosing)
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Posts: 314
October 22, 2019 7:08 pm  

Hi Liza,

I am sorry to hear of your illness and infection. As a mother of two, (though they are adults!)  I can't help but urge you to go to you GP ASAP. Fevers and infections are nothing to fool with. Meanwhile, drink plenty of fluids and rest as much as possible. I'll be praying.

Stella


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SqueakyandLiza
(@squeakyandliza)
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Posts: 275
October 23, 2019 9:25 am  

Thanks Stella,

I feel like whatever it was is all but gone now. The fever was only Saturday night and the bum pain has lessened every day. I will continue to keep an eye on it, but I think the urgent care clinic would think I was a hypochondriac if I went in at this point. I did call my primary care dr office Monday. The doc was out this week, but the nurse took down notes about what I was describing and told me to go to urgent care.  I’m pretty sure they will check back with me. Especially when they don’t get notes from urgent care. 

I sure appreciate all the concern from you all!!  I am so lucky to have found this group!!

-Liza
“May your day be bright and your bag be light.”


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