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05-28-2009, 11:03 PM   #1
BWS1982
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status on BWS

Since my symptoms have calmed some lately (but not remission) the doc that I have wants a scope, a real colonoscopy (not a sigmoid like I had a year ago)...He's never done one himself (on me, thanks Kelly ), I've only seen this GI for 6 months. I haven't had a full one in 1.5 years, and he just wants to make sure that it LOOKS improved from the inside, not just "I see this much less blood, I am going this much less, and I have a pain decrease of ____" He's well aware (as am I) that symptomology can be dubious and though I hope that's not the case, I was looking at a full colectomy just a couple months ago. If he and I are to set aside such an endeavor, we want to know all of the cards in play, as it were. I'd rather avoid a colectomy, as opposed to postponing one, but....

Either the Azathioprine (now at a uneasy 275 mg) or the antibiotics Flagyl (the devil's antibiotic)......and Cipro (which are both not maintenance medications) could be pulling some weight, or it's yet another one of the boggling enigmas that surround IBD (read: it just got better with no rhyme or reason)....Stress is all over the charts up and down, so I can't say if that has helped/hindered. But I suppose this all summarizes into "Good news" so I thought I'd put it up and update on my "status".

The disability thing is another matter, and I wouldn't have put this up here if I perceived it as a risky thing to do. I have the POTENTIAL to get back to work and get "better", it's a matter of playing the waiting game for a few weeks to ensure things are steady. I've had "improvements" like this before, and they were infrequent and fleeting, they'd come and go and be gone within days or even hours, so I'm not about to state I'm "all better" (the type of lingo that seems to be necessary to disability drones when I worked with the short term people last summer, as anything with substantial syllables and shades of gray made them confused)....we'll just wait and see. I'm not looking forward to the prep, but the colonoscopy itself isn't any problem, as we all know that's not the worst part.

I'll finishing off my brother's montage for his wedding, don't know how often I'll be back here, but I intend to update you guys, the scope isn't until June 24th (in Chicago at U of C, I always knew I'd get something shoved up my ass if I traveled to that dangerous city frequently enough.)
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Last edited by BWS1982; 05-28-2009 at 11:50 PM.
05-28-2009, 11:27 PM   #2
kello82
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wait, hes never done a scope before? ever?
is there gonna be a tech in the room too?
idk, i guess i would just be nervous about letting someone learn on me in a situation like that. youve got too much crap to deal with without being the object of someones mistake. thats how i look at it when i ask for a more qualified person. let them learn on the routine cases.
thats just my view on that.

anyways, well im glad youre feeling better. but i know what you mean about the randomness of it all and how it could be all back to hell in a couple days. had many of the same experiences, there seems to be no rhyme or reason why anything gets better or worse.
i hope that maybe the scope will help explain it.
and also indicate that you wont need surgery now.

HAHA thats what they do, they mug you, scope out your large intestine for some good shots, then run.
what is the world coming to
05-28-2009, 11:49 PM   #3
BWS1982
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No, I meant he's never done one on "me", he's an established GI, he debated at the Chicago IBD conference in April in front of an audience....sorry for the misunderstanding.

I'd never let someone de-virginize their scoping technique on me.....which now makes me wonder how GI's in school get used to it first, do they like try it out on partners in class?

"Group project everyone, partner up, get the K-Y and pillows!"......*33 loud groans*

"Just because I'm a gymnast I have to go solo again Mr. Miller?!"....
05-28-2009, 11:58 PM   #4
kello82
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HAHAHAHa that was hilarious!! i had to contain my intense laughter cause a)it hurts and b) ill wake up my house.
hahahaha omg i cant stop, the gymnast has to practice on himself. poor guy. how do you think up these shenanigans? you should be a standup bens, i swear.

omg ok.
ahh i see, hes never done a scope for YOU before, i get it. yeah i was a tad confused, i didnt *think* you were one to have patience for messing around like that, but wasnt sure what that meant. and furthermore, you shouldnt be with a GI whos such a noob like that.

for real though, the partner technique sounds fun and all but i was thinking maybe they learn on the routine patients' scopes. you know the people who are healthy and are just having a standard test. that way the risk of perforation and everything is as low as possible and no complicating factors to deal with.
05-29-2009, 05:27 AM   #5
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I love the thought of trainee GI's practising on each other... you'd be very careful with your probing technique if you knew you had to take turn-about!
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05-29-2009, 05:58 AM   #6
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Ha - I read it that he had never done one on HIMSELF. (The doc)
Benson - I THOUGHT you were feeling better, and almost asked you a few weeks ago, but didn't know what thread to put it in. Then I got sucked into "game time' or something.
I hate the "want to see why you feel better" colonoscopy. I only want to go when I need to fix something.
Also, I'd wait on the going back to work until you see how you feel for a few months. If it comes and goes, and just happens to come back when you start... what a pain.
Hope it keeps holding in a good pattern for you.
05-29-2009, 08:37 AM   #7
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Hey man sorry you have to get a colonoscopy but hopefully it will turn out that you are in fact getting better. I read you post last night right before I went to sleep and I was also confused but now that things are cleared up I'm glad he is not performing his first one on you.

I love the practicing on themselves bit.
05-29-2009, 11:17 AM   #8
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It's great to hear that you are feeling good Benson.

It would be great if doctors had to practice scopes on each other!
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05-29-2009, 02:18 PM   #9
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Ben, glad to hear that you're feeling a bit better. Got my fingers crossed for you that it'll stay that way...You really deserve to finally have a remission.

Good luck on your colonoscopy too. Hopefully it'll satisfy your doc.
05-29-2009, 03:24 PM   #10
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Seems like we're in the same state. I have been feeling much better too,
but not quite remission. Hope we can both get there!
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06-05-2009, 05:13 PM   #11
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Thanks for the well wishes everyone. I've recently gotten a bad head cold, and every joint in my body aches and I feel like someone dropped the moon on me, headache, stuffed up, sore throat, the works...I was just sick 3 weeks ago and that lasted like 8 days, and I then gave it to my gf's family as well as her. Now I think they gave it back to me. Karma's a b*tch.

Finishing my montage and I'm throwing my brothers bachelor party tomorrow (hope I'm up to enjoying it, as I'm the best man)....it's supposed to rain...
06-06-2009, 01:33 AM   #12
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good to hear from you
sorry you feel like crap though.
have fun tommorow! er...today..
06-24-2009, 10:18 PM   #13
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They removed 4 "polyps" which "appeared to be hyperplastic" (but there were more, removed ones were 5 to 15 mm in size)...he said they are likely from the healing going on. That's the first I've heard polyps show up when the tissue is mending itself, but he said everything down there (up there?) looks quite good, which aligns with how I've been feeling. There was "A patchy area of mildly erythematous and vascular-pattern-decreased mucosa...in the entire colon" which means signs of lots of past acute, flaring from what I know.

The bad part is he's leaving the practice to go to PA to work in another GI department starting next month. I just realized that the last 3 GI's I've had have been with me for 6 months or so and I've had to move on for one reason or another, 3 in a row, almost 6 months exactly, give or take a few days. Weird. Plus I am fairly certain I'm going with Dr. David Rubin now, whose notoriety impresses me. He spoke at the IBD conference in April, and he's "second in charge" behind Dr. Stephen Hanauer, one of the top GI's in the country (was the lead for the study that got Remicade approved for maintenance therapy in the 90's, as before it was just for one time use). I guess I should have peace of mind with his care, he's co-director of the IBD center and a professor at the Uni.

I was cleaned out well, and I am to continue the antibiotic Cipro, but Flagyl (gag) can be stopped, but my frightening dose of AZA at 275mg remains. If I feel okay still in 2 weeks, the Cipro gets stopped as well. That sort of worries me, but at least I'm not back to work just yet (but am expected to soon) in case I go downhill.

He actually got up to the T. Ileum and went in, and said it "appeared normal" and tissue biopsies were taken there too (no polyps there though).

The polyps will be biopsied and I'll be told of what they find, they also took some blood for some workup, and it sounded like it was for my Imuran but it's a little fuzzy.

I hope my gf had an okay night at work, she drove me all the way to the thing, waited, and drove me back (3 F'ing hours for a 1 hour drive coming home), and was late to work because Chicago has too many people and they love ripping up roads (when this was scheduled she wasn't supposed to work on Wednesdays, but it's since changed and she had little say).
06-24-2009, 11:22 PM   #14
kello82
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well so, good news it seems?
glad that nothing of concern was found.
and hooray for stopping tha flagyl too!

hey i almost went to see dr hanauer! when my options were dwindling we started travelling big time in hopes that some one would have a non surgical option for me, but we never made it out to see him.
my aunt (not blood realted, pure coincidence that she has crohns as well) is a patient of his
06-24-2009, 11:42 PM   #15
BWS1982
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I think I can only classify good/bad once I get the biopsy results back in regards to the polyps, and also see if I can successfully go off the antibiotics as well. Neutral news as of now, I guess..

edit: yeah, I haven't "seen" Hanauer yet (visually I mean), but my current doctor converses and works with him. U of Chicago is supposed to be one of the top in the nation, and somehow, miraculously, it's also in my network. Only problem is the distance.

Last edited by BWS1982; 06-24-2009 at 11:49 PM.
06-24-2009, 11:58 PM   #16
kello82
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very true. hope that the results return ok =/
how far is chicago from you?
06-25-2009, 02:16 AM   #17
BWS1982
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If there's absolutely no traffic at all, it could be a 40 minute drive to "downtown". But most people around here consider it to be an hour to 90 minutes depending on where you're headed and traffic. All the time on those surveys nationally done, Chicago is consistently ranked in the top couple cities for bad traffic, it's horrendous.

Did Hanauer actually have any ideas for you prior to you coming out here, or were those to be discussed if you DID come out to see him? They told me when I asked 2 months ago that his wait is about 5-6 months just to book an office visit.

btw, to everyone else (and you Kell ), since I prefer not to post it in the public forums, I've got some work up in the lounge right now, just as a heads up to those who've been scared off by the no holds barred discussions that have traumatized many or if anyone hasn't gotten the password from a mod yet.
06-25-2009, 10:17 AM   #18
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yeah, thats kinda like my trip to NYC...its really not that far away, but with traffic and endless construction they do, it can take 3 times as long to get down there.
my grandparents used to live in Aurora, i remember going back and forth between there and chicago, but i dont remember much about the city. they moved to...sugar grove? we havent been out there for a long time.

re: dr hanauer, he hadnt given me any info prior to seeing him, we wouldve talked at the appt. i think we got an appt in with him....and was in the pocess of sending my file (a 6 inch high mother...). maybe my dr at CHOP got him to do a "fast" appt for me? idk. you know how all the "elite" gi's know each other and call in favors lol.
then i wasted 39248039 hour car trip to see the top dog at cleveland clinic just to be told i needed to have everything chopped out...then we found our way down to mt. sinai and were happier there, so cancelled with hanauer.

hahah "that have traumatized many" LMAO....ahhh the lounge.
06-25-2009, 10:29 AM   #19
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Ha! I was laughing at "traumatized many" too!
Glad you are feeling so much better than you were. Hope it stays going strong once you drop the cipro.
Good luck on the polyp results!
07-02-2009, 04:06 AM   #20
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Well, about a week without Flagyl (my tongue sent me a thank you note) and no bad issues. The pathology said samples taken were all clear, not cancerous (five polyps were taken, more still exist, but that should be a good sign).

I also (gasp) am scheduled to return to the working world now, back at the bank via training on July 27. Economy went to hell in the last 14 months since I last worked, and they want to formally put me through the new legal changes and program modifications. I'm nervous but relieved to not feel like such a sick loser, and I'll start making some more money and not have to deal with disability or Social Security (Score one, make that two!!!)....Hope I can keep my manager, he's one of the best bosses I've had, and if they move me to another team, I'll be pissed.

Get this: The GI on the message he left me used the word remission for the first time ever when looking at everything one last time before he leaves the practice for PA. Hmmmmmm...............
07-02-2009, 07:15 AM   #21
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Back to work - WOOOOT! Don't stress yourself out trying to do everything you want to possibly do before you go back. Hope this lasts for a really long time for you B!
07-03-2009, 04:56 AM   #22
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Hey Benson,

Am soooo pleased your results came back clear! Also that you are managing to return to work!

A good manager can make all the difference so will keep my fingers crossed that you stay in that team too.

I return to work again next Friday after 7wks off yet again. My boss told me that she is unsure if HR will support another phased return and I might have to use annual leave to do the phased return because I have had several episodes off work and phased returns with them! To say I am not impressed is putting it mildly grrrr

Glad they are giving you an update on the training front. Take it easy when you go back as the concentrating alone can make you tired on top of the physical effort.

Well done!! ((hugs))
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07-03-2009, 05:08 AM   #23
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Rock on about going to work. I need to find a job here soon .. don't much care where in the country it is ..
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07-03-2009, 06:17 AM   #24
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Returning to work is a significant milestone and great news. Hope it all goes well (and for you, Jan)
07-03-2009, 07:39 AM   #25
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Good luck Benson.

You deserve a break in the Crohn''s action. The Flagyl is an interesting treatment. Not one you hear about associated with Crohn's unless you get C-Diff. I can see why that would help probably in most cases.

I wonder how darn many Dr. Rubins work in Gastroenterolgy? My doctor was Timothy Rubin. I thought he was very good at his job. One of the few doctors that have impressed me.

Let us know how the training goes. I bet banking has been turned on its ear in the last year.

Dan
07-03-2009, 07:39 AM   #26
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It's quite common to use cadavers for training purposes.
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07-06-2009, 02:39 AM   #27
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Geez Jan, it'd just be so much easier if they let you off to really recuperate and not have the whole 3 steps forward, 2 backward (relatively difficult to be "better" when one net step is taken forward as the dust settles)....gotta love episodic afflictions, eh? Hopefully it goes smooth, I was lucky enough to manage about a year off work whilst able to get to this point, the goal now is to at least keep it, if not get all the way to what I see as "remission"

Thanks Drew, and I hear the deep south is hiring coders.

Thanks D Bergy and Steve. Dan, every time I've been tested for C Diff, it's been negative, and every time they tried oral antibiotics on me, it's been the Cipro and Flagyl duo, as far as I know it's simply because they are intestinal in nature when it comes to their "focus"...I've seen other Cipro/Flagyl combo's from time to time too, I thought it was fairly common for oral IBD treatment as far as low level cyclic therapy....

Creepy, thankfully I won't be returning to work in training as a cadaver, as my blood pressure has prevented such a classification.

Last edited by BWS1982; 07-06-2009 at 03:17 AM.
07-06-2009, 03:14 AM   #28
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aw yay so glad to hear the news about work!
i know i would be totally nervous too, and it hasnt even been as long for me, but it will feel SO great to be back and im sure youll get back into the swing of it in a snap

re the cipro and flagyl: yup me too, i was on that combo for a long loonggg time, not for c-diff. i think i started on it in april 06 when i had a fistula surfacing, and then continued on them until just recently, about a month ago maybe. even had them via PICC line for about 7 months in there...

really happy for you!
07-06-2009, 06:29 AM   #29
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BWS1982 said:
Thanks Drew, and I hear the deep south is hiring coders.
/me whispers *East coast...*
07-06-2009, 08:04 AM   #30
fenway1971
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BWS -
That's great news. It'll feel good to be back to work and getting back to a normal routine. Hope the healing continues!

What kind of banking do you do? (I'm in finance industry myself).
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