Status on BWS

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BWS1982

BWS1982

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Jan 8, 2008
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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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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
 
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?!"....
 
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.
 
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.
 
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.
 
It's great to hear that you are feeling good Benson.

It would be great if doctors had to practice scopes on each other!
 
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.
 
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!
 
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...:ymad:
 
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). :(
 
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
 
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.
 
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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 :D), 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.
 
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.
 
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!
 
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...............:shifty-t:
 
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!
 
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))
 
Rock on about going to work. I need to find a job here soon .. don't much care where in the country it is ..
 
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
 
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. :D

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.
 
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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! :D
 
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).
 
Awesome news Ben, I'm excited for you. Good luck going back to work. I'm sure you'll have fun. :)
 
I'm dishonorably a part of a major banks credit card division. I've done customer retention and collections. When I return, it'll be to collections. On the plus side, the bad economy has collections booming whilst the rest of the financial world is in pieces....the demand for debt work goes up as the rest goes down, for obvious reasons. At least the recession shouldn't eliminate that role, although I know I'm meant for something more. It's one of those "pays the bills, get's benefits, will hold me over" type jobs I got straight out of college because I needed money fast and my degree in art is harder to get into, so to hold me over I went to work for the bank. Getting Crohns has kept that "temporary" stage in limbo though.

Thanks again guys (and Butt that hurts)
 
I have virtually failed with Imuran (more or less) as if it's doing anything now, it's not nearly enough. I have tried 6 weeks of Methotrexate. I got a little bit worse while on it (it was the injection too), so after 7 shots now, he's call it quits.

I've failed on: Asacol, the Cipro/Flagyl combo, Remicade, Cimzia, Methotrexate, long term pred use and apparently Imuran. I've also tried 3 kinds of probiotics, both colofoam and corticort (liquid) enemas, Canasa suppositories and supplementation with things like Ginger, Fish Oil, Vitamin D3 and the heavy modulation of diet (did the SCD but probably not for long enough because I was losing too much weight at the time and kept losing it, couldn't stand the thought of getting below 150 again)...

I now have left LDN, a possible study, and, finally Tysabri, before surgery, according to the GI. I am still flaring going about 10 times a day with blood in many of them, mucus, etc...and the bad urgency is still there. I cannot trust the passing of gas still, either. Still I have cramping when I have to go, as well. Chronic fatigue very present.

In the few months since I've been around as much here, my diagnosis has been brought into question. In December, Ulcerative Colitis was brought up again, more seriously than ever, to the point that I'm now "Indeterminate Colitis" and in with about 15 % of cases so resilient to analysis and treatment, they reside in the blurry area of an enigma. The serology, however, has recently (as of 2 days ago) had my GI lean more towards Crohn's again, as some markers are more in line with that, but UC is still a possibility.

I'm getting a call on LDN processing on Monday sometime, as it has to come from a Pharma compound. Hopefully it's not going to cost me an arm and a leg and a colon to get it purchased because of this. It's supposed to be a cheap drug, but I might be paying a lot for the service of getting it prepared from Naltrexone (typically in 50mg doses my mom says)...

The study, should it come to that (hopefully not) will be for something the doc will have to do without ever being on Tysabri, and he assures me I will not get worse for the sake of science. I will not have to sacrifice my health to contribute to the IBD greater good, so if it's evident I'm on a placebo (my fear) I will be pulled off it or given something else, which sets my mind at ease (I don't want to d!ck around with an "experiment" as I've been doing that for the 2.5 years this flareup has been going on, and I'm tired of it)...

Colectomy is the surgery in question, should it come to it. I will try my damnedest to make sure it doesn't. I'll do a liquid diet or the SCD before that if I have to. I will not destroy my exterior to hopefully repair my interior, that's not who I am and I will never feel "okay" with that concept. I might as well cut off the lower half of my body.

Just a realist POV and update from me...Yes, I know I haven't been around and this has been kept in the dark the last while. I've been going through a lot and been very emotional and angry.

But I felt complimented quite well when the GI told me it's probably not necessary to go to the IBD conference next month. Though he says more education is always a good thing, I'm a very knowledgeable patient and though there may be new information there, I'm very informed and it's not as beneficial as for others (I often bring his own judgment into question via my nurse and sometimes provide a perspective that makes him change or second guess his decisions, out of concern, not dissent, mind you)...At least I know I'm being proactive and my mind is doing everything it can to contend with this wretched immune system. I might still go to the symposium, but each year it's been less and less useful and I have a good enough memory to retain what is often just reiterated information for the newly diagnoses mixed in with the hard to find breakthrough or enlightening info.

On the plus side, I'm moving out in 4 weeks into my own place and my fiancee is moving in with me. It'll be the first time on my own in 27 (almost 28) years because I've been so financially stricken. My fiancee joining up and us finding a place for a good deal is making it happen. She's about all that's going right in this life right now, and I'm thankful for that.
 
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**HUGS**
Sorry to hear that things are not going well for you, wish there was something that could be said/done to help. However, glad to see that you're able to move in with your Fiance and that things are going well between the two of you. :)
 
Holy cow Bens - I had no idea you were sliding so much. Did the Remi or Cimzia do ANYthing for you? I notice that Humira isn't on your list of failed meds. I didn't know if it was worth a shot. And what about 6mp? It's similar to Imuran, so maybe it would buy you some more time since the Imuran DID work for a while.

Do you know that name of the trial med? It seems strange to me that they could pull you off of it if it seems like a placebo. You don't HAVE to stay on it because it's a trial?

Hope you find something quickly, and you start feeling better.

BWS said:
On the plus side, I'm moving out in 4 weeks into my own place and my fiancee is moving in with me.
Click to expand...
SQUEAL!!! ^
LOVE that news!!
 
:( I'm sorry Bens... what about that Vedolizamab (sp?) stuff.... we've talked about Tysabri before and I think we pretty much feel the same way about it. I've got one increase on Humira and Tysabri left before a complete colectomy so I sorta feel the same as you do. Its hard to fail so many therapies its like you just keep getting punched down.

I'm glad youll be getting your own place. I hope the transition goes smoothly and everything ends up happily :)

I'm not very good at saying what I mean in these instances... but just know I'm thinking about you.
 
I'm so sorry to hear all this news Benson. I didn't realize how serious your situation was. I hope that the LDN will bring you some relief and if not - maybe the trial will do it for you. I am happy that you are able to get out on your own and with the person you truly want to be with. I know that is the silver lining in all of this for you. Wishing you well with everything!
 
I feel bad that your not doing well. I hope that one of the three therapy choices will work for you and help you start to feel well.
 
You have fought this thing with much dignity and vigor up to this point and I don't think anything will change that. Keep on fighting one battle at time. And try to remember that girl loves you for what's in your head. Not what's in your belly ;)
 
Hang in there, man. I know you fear surgery...but it wouldn't be the end of the world. My mom had it...and 25 years later still lives, eats normally.

Start SCD tomorrow or at least the elements of it (reducing breads, sugars, etc.). You might as well at this point.

This is what I hate about this disease...seeing good people like you suffer.
 
Hey Bens,

I knew you were special - but not so good that you are a bit special with regards to this disease! :)

So sorry to hear of your troubles. I hope something works for you soon.

Great news about moving in with your love, though :)

(((HUGS))))
 
I hope they can find an awesome treatment that works for you without surgery. I don't like the whole surgical option either especially when stem cell research is on the brink of being able to treat us. They are 90% there scientifically. Hopefully soon it will be out there for us to be used. I'm praying for you man.
 
Holy crap, I didn't think this would happen in 12 hours time after updating you guys, makes me smile. :)

I have to prepare for the fiancee for the game, but it's great that this slew of comments and support rounded up and reminded me of how I'm not that alone or isolated within this situation, even if it's not concurrent with others IBD woes, it's similar enough to consider it a "like minded" circumstance. Thank you, I'll be back later to explain more. :)
 
Sorry to hear so much is going on with you Bens. I really hoped things were going to be on the positive side for you! Thankfully you do have your wonderful fiancee and that's exciting that you two can move forward with your lives with this next step. You're such a wonderful person and so helpful for everybody on here. Keep your chin up and remember we're all here for you as well. :)
 
That sucks man! I hope things start to turn around for you, especially with such great things happening in your personal life! :)
 
Goodness, sorry to hear things are rough for you right now. I hope they get you feeling better soon! Congrats on the new place with your fiance, thats awesome!! Hang in there! I'll be praying for ya to feel better soon!!
 
Thanks to the others too...

MBH, the Remicade did nothing, in fact, I got worse on it in the first half of 2008 and went on disability at the time, and the failure caused the then-GI to give up on me and pass me off to Rush. Same with Cimzia, I saw no benefit, I was stagnant the 6 months I was on that as well. Yes, he said if it was evident I either got a placebo or if I was getting worse, they'd pull me from any study or trial they have me in, as they will put the patient's well being above the loss of one subject from a study. I don't know if that's a special case he makes for me because of my lack of options, or that route is one for all subjects, but I admire their consideration for my well being.

Humira isn't really an option because it's too similar to Cimzia they say (and I've read)...

The best thing was Solumedrol/Levaquin both IV when I was hospitalized. It put me in near-remission in about 4 days or so. Beyond that, I've only gotten better when I started on Asacol after 7 months of it (somehow) but the disease was mild back then.

Vedolizumab is an option for one of the trials, Katie. There's a couple he said, but he'd want to do that before he ever tried Tysabri, because he said all studies they've got there preclude past Tysabri usage. Don't worry, I know what you mean when you say what you say, it comes out right, so don't second guess your tact or delivery, it means a lot. :)

I need to consider the SCD's timing, now, as if I start it at the wrong time, I might not know if LDN is making a difference or if I need to keep doing the SCD as well. It'd be good if that happened (getting better) but I'd need to know what to keep up and what to possibly omit later, especially if for some reason LDN is expensive, I don't want to pay for a drug not pulling any weight.

Yeah, Jeff, that'd be nice, that measly 10% that's left needs to be completed for stem cell...I keep feeling like one of these will be my saving grace, one treatment will save me from surgery, so at least that's optimism right there. :)

Thanks for all the words of encouragement and well wishes, guys, means a lot.
 
Yeah my GI is really confident about stem cells. He even said that our bodies won't reject the stem cells because it's made from our own stem cells and not someone else, that is one of the big successes. The problem they are having is finding the right amount to add. I'm thinking/hoping that in two years I'll be on trial for that and they will be getting rid of my scar tissue that's built up in my anal canal.

Best of luck Benson, let's not have to get surgery any time soon ;)
 
Benson I am so very glad you speak up and maintain a high knowledge base to do with your health!

Without it there would have been the danger of being a guinea pig rather than constructively trying treatments with close monitoring as you have done.

I totally understand your anger and emotions being at a high level as it is not for want of trying on your part to attain some stability!

We are all glad you felt you could share what is going on and it is a privilege that you have entrusted us with.

Please know you are always in our thoughts and allow yourself to be carried along by our vibes of comfort and strength.

One day at a time my friend and we will keep pace with you.

((Hugs)) and well wishes for your new abode with your love.
 
Yes Jeff, it's a pact, no surgery. If you get your colon removed, I will cut you open and put it back in. You'll do likewise for me, that will ensure our aversion. :)

Thank you Jan, you've always demonstrated such wisdom and spirit, please grant my 1/8th of Irish the luck it's known for to help things move along. :) I don't have your Rheum issues or asthma issues, but I've seen the fight you endure to the Crohns (well, the Crohn's could be worsening your other issues, I suppose)...I hope your new life with Duncan and all is as smooth as you deserve.

Yes Steve, and my fiancee (and her family) believe that being at home here in this environment (bad family life) is making me worse. Now while I'd hate for that to be true, it would be awesome if moving out gave me remission or a reduction in symptoms. The bad part would be that the stress was in fact making me worse and though I know my family wouldn't do it on purpose, they'd have been making me worse all along. :confused2:

Thanks again, all!
 
Ben, I'm sorry you're dealing with all this crap right now. I'm so frustrated for you; I hate how none of the meds seem to work right for you. I really hope that medication-wise, there's some kind of breakthrough in the near future so people like you don't have to go to drastic measures like a colectomy. Hang in there, man. Good luck starting the LDN.
 
Yeah man I would love to have that pact and I would make it if it wasn't for the scar tissue. If they could just get rid of that I would have zero problems right now. I hate that I'm in remission from a Crohn's standpoint yet I feel like crap due to the excessive scarring.ugh I wish I could just have them due the test on me tomorrow instead of waiting 2-4 years.
 
Well, I make the move (a whole 400 feet or so) down to my new place this Sunday, it's going to be a big push, probably stressful too, so I have to spend a lot more time finalizing the packing and whatnot.

We (fiancee and I) haven't really finalized our internet plan yet (looking at AT & T because Comcast seems to be a farkin' ripoff for what you get, even if it is good quality) so I don't know if it'll be a bit before I'm on while I'm over there. Either way, I could still use the library or fiancee's parents' internet just to stop by quickly, but, I'll have to see how that all works out.

Just wanted to say I'll be busy for a week or so. Be nice to each other. :)
 
Congrats to you and your finance.. A word of advice, take it slow and dont stress, everything always falls into place. Pack your shute and you will be happy you did. I have moved 23 times and the last 3 I packed myself and unpacked. They were the first times I never got a flare. Your jouney begins...make it a good and positive one... hugs to you both (yeah I know you hate hugs lol) too late!
 
Thanks everyone. Off to the bank to drop off the first check to the landlady, then to do more packing. :)
 
Yay Benson!

Great news. Hope your new abode with your love is all you wish. Have fun with it and together.

Hope the move goes well my friend. Will be thinking of you both on Sunday.
 
merrywidow said:
word of advice, dont lose the tea bags or kettle!!
congratulations of you move.
Click to expand...

That made me laugh. Make sure you pack them at the top of a box somewhere.

House moving memories (and I've moved a lot):
First meal in the new place is always a take away.
The first night is always spent in a bedroom without any curtains up... you have a fitful night's sleep and wake up thinking: "where the hell am I?"

All good stuff, though!
 
ooo
good luck Ben
I've just moved too! I think it's the House that Jack Built!
we've had 4 power cuts, blocked loo, blocked drains, flooded garden, a gas leak oh the list is endless! no wonder they moved out! lol
so good luck, be happy, healthy and wealthy !
 
Thanks everyone, I am now going to disconnect the computer, and it's going with us tomorrow, so I should keep going.

Thanks again for the support, and we really aren't tea fans like you guys in the UK :)tongue:), so, well, I can't really think of a product we "all" drink over here, although maybe I can just state "caffeine" because we all seem to have a source of that. I don't like coffee or tea, I get mine from Vault Zero or Diet Mountain Dew if I have to in a pinch (like my 10 hour trips to downtown Chicago for GI appointments with 2 hours of sleep)...

I read your posts just now to my fiancee on the phone, the result was a mix of laughs and "awwe" 's ... :)

Be on later, hopefully from my new domain!
 
Yeah, I'm late. But yay!! I'm really happy to hear you guys are going to be getting a new place. Congrats! Hope it all goes smoothly for you both!
 
:congratualtions: And BTW, I never saw the Chuck Norris jokes before yours, and they're hilarious!
Current fave:
Chuck Norris sleeps with a night light. Not because Chuck Norris is afraid of the dark, but the dark is afraid of Chuck Norris.
 
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I'm copying and adding to an update on things for me. I've not been too well, and more emotionally than anything, have been battling some "demons"...I feel like any surgery is giving up, so I've not been feeling too well about things. I state abdication is not an option (meaning I won't quit), but, sometimes it feels like "the powers that be" could give a crap about whether you're a good person (basically, I've lost all faith in "good and evil and karma" and only see the religion of "chance")...Sorry for the glass-half-empty take on things. Hope and faith didn't work, we'll see what fate has in store.

=========================================

I was doing a lot better for 2 weeks or so back in the spring. I have been able to put on some weight going to the gym, and have, and I can work out about 3 times a week and do, but I'm not doing well with urgency still, or frequency. I still have my "few seconds to get there!!" moments, and go a dozen times a day. Far from remission, obviously, so the GI's have always been talking colectomies if I don't respond more. I have tried it all except Tysabri, and right now I've been on 4.5 mg of LDN for almost a year. I'm amazed I'm doing as well as I am on something so "mild", though.

So I was to get scoped in July, and then my work didn't allow that, so I had to push it to August, they changed my schedule on me and again, their policies didn't allow me to get said scope. Oh joy. I finally had one I could keep, earlier today, because I got more FMLA. I will be deducted money for a day off (in the US we don't really get much time off) and I had to take what is labeled as "overtime" recently (more to come) to make up for more hours off prepping/lost money, but I need the scope and the money. I'm trying to save for a wedding and solve a mystery of science.

This scope was to check up on things, I prepped Monday, and did it today.

Scope was as okay as it could have been. Of course what would one of my scopes be without more mystery and confusion: the immediate findings now, because I'm actively diseased quite badly, say it's Ulcerative Colitis (lovely, UC again!!). This could be the 3rd time my diagnosis changes. I started with CD, then in 2008 a few months led to "seems like UC" then more advanced GI's said no, it's Crohn's Colitis, the tests just show it's Crohn's in the colon. The current GI wants to analyze the biopsies first, but thinks endoscopically it appeared to be Ulcertaive Colitis. He says that my previous Prometheus results stating Crohn's Colitis could easily be attributed to a pathogen or false-positives, and that the walls are just covered in what is typically flaring UC.

A J-Pouch was a likely "solution" if it is UC, and if it is UC that'd explain my horrid luck with EVERY possible treatment except Tysabri, because I've been treated for severe CD. He'll get back after reviewing more evidence/the biopsies. I'll hear back in a week or so. I find this both good and bad. I'll be pissed if I wasted years of "mistreatment" on "Severe Crohn's Colitis", even though I can't really blame any one person. It's not for lack of expertise, either, at this stage. I have one of the top GI's in the nation, Dr. David Rubin, and I trust him with my life. Why else would I drive almost 3 hours one way to see him after all of the local ones keep scratching their heads.

Forgive my dramatic and pessimistic attitude, and even more so, my recent sporadic absences from the forum. I haven't forgot why I signed up here, it's just my depression/OCD/anger is very prevalent lately. I haven't had a full night's sleep without "midnight trips" in over 3 years. I'm really worn out from this, and it's just costing me more and more money when I'm supposed to get married a year from Friday.
 
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Thanks for the update.....wow I'm so sorry to hear that you aren't going so well and talk about around the world for sixpence with your diagnosis! I hope you get some definitive answers soon and can set your sights on an appropriate treatment.

It is difficult for me to talk about surgery and at the same time say too much in the negative about it. Roo's surgery has been successful for 4 years now she has remained in remission, so I guess you get my drift but I certainly don't see it as giving up.

I hope you start feeling better soon both physically and mentally. :hang:

Thinking about,
Dusty
 
i was gonna ask you i you were still getting married in october. now i dont have to ask!!


benson, if you dont experience the bad, then you wont appreciate the good.
 
Hi Benson, sorry to hear that you are not doing well physically, and I certainly understand the anger and frustration that comes with that, wish you didn't have to experience it at all. You are a tremendously strong spirited person and I hope that things clear up for you very soon. you have always been so supportive of me and my own trials/demons please know that if you ever need a friend you can pm or email me, I am a good listener and wish for you all of the good things life has to offer. Hopefully the clouds will clear for you soon.
 
Thank you for some shoulders, though I still haven't gotten word, so I'm not going to until later this week.

I feel surgery is giving up/failure, but that's a frame of mind, an opinion. One man's trash is another's treasure. One man's victory is another's defeat. I would be sidelined from activity for so long (hernia risks), I'd be physically altered, etc...it's all perspective, so I can't say that's "how it is" but that's how I see it.

Merry, I've experienced the bad for enough to get an impeccable frame of reference for the good. Now it's just torture.

Thanks Jerman, I know you're there for me.

My fiancee is still very happy about the possibility of UC instead. I try not to say much about how it kills me yet makes her happy. I want her to "live" her bliss for however long it can last, she's endured enough garbage with this disease for 4 years. However fleeting, she can ride the wave of relief. I'd join her but my surf board is lost and I have sand in my butt crack (a little humor and pessimism married).
 
benson a pouch aint that bad you know. for me it gave me my life and independance back. i know you like working out at the gym, so its someting you have to consider carefully. working out may not be possalble becuase you may get a hernia. personally , if i had known the benifits of a stoma , i wouldve had it done years previosuly.
 
I'm with Sharon on that one. My stoma has given me my life back.

Sorry to hear you're going through such a tough time though. Hopefully with the new dx you'll get some relief with meds that might actually work! I wouldn't advocate surgery for anyone, but if it does come down to that, it's not the end of the world. As said above, it's actually been a Godsend for some of us.

Good luck to you...
 
I state abdication is not an option (meaning I won't quit), but, sometimes it feels like "the powers that be" could give a crap about whether you're a good person (basically, I've lost all faith in "good and evil and karma" and only see the religion of "chance")...Sorry for the glass-half-empty take on things. Hope and faith didn't work, we'll see what fate has in store.
Click to expand...
This is how I feel. I've always considered myself a good person, I don't think I really ever deserved something this terrible. I was never a bully, or really ever picked on anyone when I was younger, I was always the one being PICKED ON lol. I always shared my toys when I was a little kid. Maybe there were a few moments of time where I acted like a ******* but everyone has their moments. When you really sit down and think about it, it doesn't get much worse than intestinal inflammation. Disgusting, embarrassing, enervating, debilitating, CHRONIC illness which you will never be able to rid. Top it off it's hard to talk about the details, so you're forced to repress a lot of the terrible feelings you constantly have. And on top of that I'm forced to watch other "healthy" people like my brother and sister, and friends live out their healthy lives, while I sit in like a freakin hermit cause I can't go out without not knowing where the nearest bathroom is. Some life for a 22 y/o.

At least you're going to have a wife who sounds awesome and cares. It's tough for me to even get out in the field because all I deal with is sickness.

Sorry for the equally depressing post, just know I'm there with you, and I understand everything your feeling.
 
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BWS1982 said:
I'd join her but my surf board is lost and I have sand in my butt crack (a little humor and pessimism married).
Click to expand...

LOLOL haha bens i love you....never fail to crack me up.

maybe some calmo will clear up that sandyass issue? worth a shot....;)


ive been wondering how youve been healthwise, sorry to hear its not so good. cant really say that i have any advice, im like still where you are too. stuck in this no man's land of shittyness but the few paths availible are just so....convoluted....its impossible to know what to do. so you just sit there, not going anywhere. nsjfhiushofiuhewfiuwef.

i agree with you on the non-existence of good and evil. totally there with you. it is all just chance, its just the way it happens....not for any reason at all. religion of chance...i like that. and the only way i see to deal with the chaos is we each get to make up our own reasons for why things go good or bad or whatever. instead of turning outward to the gods or the universe to figure out THE reason why, we are better off turning inward to ourselves where we can create A reason why. then theres no right or wrong. there's no evaluation of if i deserve this or if this reason is justification for what has happened or what could i have done to make it different...none of that matters when we accept the fact that things JUST HAPPEN. cause has no relationship to effect. its more like the other way around i guess, effect happens first and will always happen first regardless. yeah kind of glass half empty sounding....like the events of our lives are just a game of roulette....but they are. thats how i see it. sometimes thats more empowering than it seems.
 
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I'm glad my cynicism isn't alone in this, Poppysocks. Believe it or not, there are some girls at that age that can take on such an ailment. The older you get, the fewer superficial women of your age you'll encounter, I've noticed.

Cindy and Sharon, it's great that you coped so adeptly, but you have to understand that is simply one (common) perspective. I appreciate your opinions, having gone through surgeries, and finding immense relief, though. I don't believe everyone should share this view, but the idea of surgery and possibly never being able to go to the gym again might as well be receiving a terminal diagnosis. To me, it's like losing my sight or the ability to walk. If I lose my physical capacity and can't ever work out again or be intensely active, they may as well cut out my eyes so I can never draw again.

Edit: Yeah Kelly, unfortunately it's that way (did you ever get my PM from a few weeks ago?) and it doesn't seem like there's any point in doing "the right thing" if nobody gets punished and good people get struck down. I've been losing more and more faith in religion and right/wrong as time goes on. A fair and just God would not allow the righteous to succumb to such atrocities in this world. I don't want to hear about supposed afterlife's...this is the only life on this beautiful Earth we have, why would I be okay if something (some One?) stole that away from me and then had the audacity to justify it by saying well if you behave you get it better later? You may as well abuse a child for 18 years and tell them when they move out they can live as they please. Yeah, it makes that much sense.

It's like a Guindon cartoon caption: "The good Lord never gives you more than you can handle. Unless you die of something."
 
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Hugs Benson..I didn't give up--Yet I have a Pouch! :) Life has been pretty good. I'll never be the old me...She's gone...But, I'm alive---loving up my kids and husband. Crohns sucks! But, this is the lesser of two evils. As I type here, my stomach still gurgles...I had UC--got the pouch--now I have Crohns. I'll take this over any other option..You should look at the Peters Principles link. Peter Nielson has crohns. He has a zest for life...Extremely healthy. Healthy life style with crohns. WHen my mom says, "Awe, poor dear! You have crohns." I say it is what it is.....and its me.
Stay strong...Peace, Sue
PS...Just remind me this when I feel like crap! Sue
I HOPE this makes sense
 
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Sorry to hear about your most recent news, Benson. I can empathize with how you are feeling. Wishy washy diagnoses and feeling like there aren't many options that wouldn't totally change your way of life - that's a lot! It is definitely a difficult decision and you have every right to feel the way you do. You have a lot on your plate with your health and planning a wedding... You've got to feel good about whatever decision you're going to make and know it's the best choice for YOU, not anyone else. I hope these days fly by and you get your news soon enough. All I can offer to you is my support and encouragement. My wish for you is that whatever decision you come to, you are content and at peace with it :)
 
BWS1982 said:
I don't believe everyone should share this view, but the idea of surgery and possibly never being able to go to the gym again might as well be receiving a terminal diagnosis. To me, it's like losing my sight or the ability to walk. If I lose my physical capacity and can't ever work out again or be intensely active, they may as well cut out my eyes so I can never draw again.
Click to expand...

Hi Benson - What makes you think that having a bag or a pouch would prevent you from going to the gym and working out? I had a bag for a year and did EVERYTHING -working out at the gym, pilates, swimming, sex, bike riding, etc etc.

Most likely you would be able to be MORE active than you are now.

I have a pouch and have been re-dx with Crohns like Sue 2009. Still, wouldn't trade it for the world.

Don't think of surgery as "giving up." It's just another treatment option. Best to make the decision before the decision is made for you (i.e. rupture).

Hang in there. -Amy
 
I was told there's a chance that the intensity I work out at would result in herniation, even years later.

I don't want people who had surgery to take my feelings to mean that THEY gave up. Each disease case is different, each life and disease stage is different, it's all subjective. :)
 
I'm still kind of new around here but I read through the thread. It's comforting to see some other people on here that in-spite of crohns are really dedicated to hitting the gym. I've been a bit worried lately that it may be taken away from me at some point. Sometimes it's the only place I can relax, so that would be pretty devastating.

Anyways, I hope things start looking up for you. Even if you cant wash the sand out of your ass, gravity, the most prevalent and powerful force in the known universe, still has to step in at some point and provide relief. Just keep marching and it'll do the rest eh?
 
Couldn't agree with you more BWS! For me getting the pouch...was telling the disease--"I'm Note Going To Take This Anymore!" So, colitis was running my life...Instead of Sue With colitis---It was Colitis with Sue..So, I thought the surgery would help. Plus, I figured, I'm young enough--and strong enough for the pouch...I just was not ready for the bag....But, are you ever ready for the bag? I don't know....It may still be my choice in the near future. I hate this disease..as I am sure most of us do....Sue
 
Hey Benson, just wanted you to know that you are on my mind today and I hope that things improve dramatically for you real soon. take good care my friend.
 
I have just finished reviewing the biopsies from your colonoscopy. I believe it is good news. The biopsies are consistent with ulcerative colitis. Remember that unfortunately, despite best efforts, this diagnosis can’t be con...firmed by any single test, but I do think, given your multiple examinations and biopsy results over time, that this is very likely the definitive diagnosis.

It is therefore my recommendation that you consider the surgical option we have discussed, but given my impression, you are a candidate for the procedure called a restorative J pouch (a new rectal reservoir made out of your small intestine).

Can I get the ball rolling please and obtain a surgical consultation? I will, of course, discuss each step of the way with you and assist. The consultation will be the next step.
Click to expand...

I don't find surgery good news, I really don't care about such "relief", I care about fending off my "territory" and not conceding to the disease, I care about reclaiming MY tissue and MY body the way I was born with it. The moment I get cut open and lose my flesh and blood to this disease is not a moment of victory any more than the Native Americans leaving their land to explorers.

I'm going to leave for a while, I just need to handle this my own way, sorry.
 
I understand Benson and you may not see this for a while. I fully support any decision you make about your health, it is your choice. While ever you are winning the war that is the stand you should take but if your intestines start to dictate the next move, the next battle, then there comes a time when both sides need to sit down and negotiate. All I can say is if you reach a point of critical decisions needing to be made don't let your intestines call the shots as they very often will take no prisoners and leave you no choice but life or death with nothing in between.

I wish you all the luck in the world with the decisions you will need to make and hope more than anything you find a solution that is both acceptable and peaceful to you.

All the very best,
Dusty
 
Benson, sorry about the news, I know you must be reeling from it. Please know you will be in my thoughts and that if i can do anything to help-even if it is just to scream and vent- I will be a friend to support you. Please take care of yourself and try not to be too tough on yourself. You are a brilliant and compassionate person and deserve better, somehow you will make it through. We all believe in you and wish the very best for you.
 

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