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hannahleigh89 posted:
I had a doctor's appointment yesterday. I got in trouble for not calling her a few weeks ago when I started getting sick again, and she got really concerned and made me do a scope, sans sedation. My pouch looks really good and healthy still, so I was really happy to hear and see that, but my small intestine still has active disease and I have some ulcers that she said looked like infection. They did a stool culture for C diff and some other stuff. I got a call today saying that so far, it's negative for C diff but it'll take three days to get the full culture complete. I get to start Flagyl (on Monday, pharmacy has to order it) to try to clear up the infection ulcers, and she said that we may have to adjust my medication, depending on what the biopsies show.

I was under the impression that I'm on pretty much the last combination of drugs left, so I'm not sure where she might want to go from here except for a higher dosage and more frequent... I guess we'll see. Just wanted to update everybody while it was sort of fresh on my mind. I hope everybody else is doing well.
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OyWithThePoodlesAlready responded:
oh, yuck, I'm sorry I guess you had been feeling crappy since we talked a few week ago, huh?
I hope the flagyl makes you feel better! (though I remember it being rough stuff!)
 
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Magsjeanea responded:
Hannah, I am so sorry that you are having such problems. I hope that y'all can find the right combo to calm down your small bowel.
Take good care,
Love Goes There, Jeaneau
 
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hannahleigh89 responded:
Yesterday was the one year anniversary of my first Crohn's related surgery- a total colectomy. It was also the six month anniversary of the third surgery where they connected my ostomy to my pouch. Doesn't seem like it's been a year.
 
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OyWithThePoodlesAlready replied to hannahleigh89's response:
wow, time flies! how are you feeling? getting ready for school?
 
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hannahleigh89 replied to OyWithThePoodlesAlready's response:
I'm trying to. I'm trying to psych myself up for it and get ready. I'm just having a really hard time because I still have no energy, I still have pain, and I still have a lot of trouble with food choices and bathroom situations.

I'm just kind of... Scared. Especially with there being active disease and some random infection I still haven't heard back from the doctor about. But I'll get there, hopefully. I think once I get started, I'll enjoy it. At least that's what I'm hoping for.

How are you doing?
 
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miserable_sob replied to hannahleigh89's response:
Hannah, just take it one step at a time. If going full time takes too much out of you, settle for part time. I made it through college that way, and didn't have to take out any loans by keeping it at a sane pace.
 
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hannahleigh89 replied to miserable_sob's response:
There is no part time in nursing school. It's hard and heavy for two years, with very few breaks. At least the program I'm in is. That's what's so scary. It's all or nothing.
 
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OyWithThePoodlesAlready replied to hannahleigh89's response:
aw man, that's so frustrating! Did the antibiotic help? Do you know when the dr will get back to you?
I hate the volatility of crohn's!

I had an odd type of success last week - I had made myself sick getting ready for a big meeting with too much stress and coffee - but switched to liquids when the pain started and got through my meeting with just 2 tylenol. I have no idea how bad it was in context, sometimes its worse than others, but I was thrilled to not have to take the day off or have the pain interfere with work

I really hope you can find a way to make school and all your desires possible...

take care and keep us updated
~Ali
 
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miserable_sob replied to hannahleigh89's response:
I'm sorry to hear that Hannah. Perhaps talking to the administration there about this could smooth it out for you.
 
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hannahleigh89 replied to miserable_sob's response:
The only problem with that is that they can remove me from the program if they don't think I can handle it. It's a very competitive program and there are hundreds of applicants trying to get 30 spots. I'm afraid if I say too much, they'll give my spot to someone else. My adviser didn't even want me telling them that I have Crohn's.
 
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hannahleigh89 replied to OyWithThePoodlesAlready's response:
No help from the antibiotic yet. Still running a fever and still feeling crummy. I have an appointment on the 11th because the results from my biopsies came back and she can't really figure out what's going on, so we're gunna talk about medication changes and stuff. Ugh. I'm tired of going to the doctor, lol.
 
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hannahleigh89 responded:
The doctor finally got in touch with my mom. It looks like the weird ulcers she thought were infection are just more ulcers from the Crohn's. Biopsies and stool cultures came back negative for infection, so I get to stop taking the Flagyl. I'm not sure where the fever is coming from though.

I still have my appointment to try to figure out what the next step might be. I'm getting quite upset about it because I was told this was the last option after my surgery.

I'm so stressed about several things and I know it's just going to make me sicker, but I can't seem to shake it. Hope everybody else is doing well.
 
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miserable_sob replied to hannahleigh89's response:
I remember how about a year after my J Pouch surgery, an ulcer was bothering me at the time. This required the doctor slicing me open again. Even though the surgery sounds quite major, from my perspective it wasn't too hard. Recovery was quick after that and no ulcers have returned since then. Sorry I can't give you more fine details since the surgery was so long ago. I certainly wasn't discussing it on the nearly non existent internet then. It was around but very few people knew of its existence then.
 
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OyWithThePoodlesAlready replied to hannahleigh89's response:
Holy crap! I'm so frustrated for you! How high is your fever? That is just miserable. You're on methotrexate and humira? I thought I'd read they'd do 6-mp and a biologic sometimes, but I'm not positive about that. Its got to feel like you just can't catch a break! I'm sorry I don't have anything else to offer but we're here if you need to vent

hang in there
~Ali


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