An update on my IBD escapade

[BWS1982]

Well, after reporting several times recently of losing ground to this damn disease even on Remicade for 3.5 months, going off the pred and seeing some more blood and back towards more BM's a day (around 8), the doc is really not liking things. So he's gone ahead with asking I do an "abbreviated scope" like Kev and I discussed in one of the threads somewhere. No prep (well, 2 enemas a couple hours before, gotta hold each in for 3-5 minutes, there's a good challenge) and from what the nurse said when I scheduled it, no anesthesia (which does NOT sound pleasant with the state of things down there). This is to get some more answers, haven't been scoped since Oct of 2008 and at that point the current doc at the time noted the inflammation had a marked growth to more resemble a mass of inflammation akin to Ulcerative Colitis (but stayed with the diagnosis of Crohns due to it still being patchy and other markers)....This is a new doc (but more experienced), and he wants to check the level of inflammation. I'm off the pred, and the 2 things I DON'T want to happen are 1. Surgery of any kind, and 2. a return to my arch nemesis Prednisone....sounds like if he sees things quite out of control he's going to lose some faith in the Remicade as an option for me (again, for me, not to say everybody). Even now, I am not sure he'll remove me from it, since it's a one chance drug due to antibodies....

Maybe Humira? Cimzia? Antibiotics (since they worked wonders last fall)...I hope he doesn't find any REAL damage such as fissures or fistulas, etc...

I have no clue, I'm very nervous because the other issue that's arisen is that I've been almost forced into a Short Term Disability option due to my deterioration and lack of improvement. This is my 2nd day off for it, and the dr. HAS TO approve it or I return. I just can't do it, I'm down to about 23 hours of FMLA that would have to last me until Sept. and if I have another couple bad days like Saturday was this last week, it's gone. I can't make it more than a few hours most times without massive messes to clean up after myself (inconveniently located bathroom at fault) I need to have some time off to heal. It's either gonna be paid or unpaid after all the dust settles if approved, I really don't care as long as it doesn't go too long, I'll make it if I can get better. Some sort of leave has to happen, this sucks. It's also a performance job, and when you're leaking blood from a painful orifice, it's hard to care about statistics and metrics; so stress hasn't helped either.

I was gonna do this in Jan this year, but was put in the hospital and told well we want to make you better ASAP, so why would we plan on a few weeks or more of this disease not improving? Well, that time I had the FMLA to rest on, not so anymore. I improved for about 2 weeks after that, but then got worse. Shotgun therapy prevented knowing what made me better.

I will almost certainly lose my job if I use up the remaining FMLA and have a single 15 minute increment not covered, out of policy. I've been spinning tires and getting worse for nearly 9 months, it's time to get better dammit. REALLY need the doc to help my cause, I can't make it at work anymore, it's out of control, extreme fatigue where neither 8 hours, nor 14 hours of sleep will suffice, still ready to fall over most of the day. Those horrible spells of lightheaded-ness came on this last Saturday. WTF? I need answers, and tomorrow at 1:30pm Central Time US, I hope a camera on a tube in my ass will provide them.

 

[My Butt Hurts]

Jeez. Good luck with the scope tomorrow. I hope you get the answers you are looking for. You really need a break.

 

[Jeff D.]

Good luck man. I hope they figure things out soon and that you can get some rest.

 

[Guest]

good luck with it benson, i hope the results arent as scary as you're imagining. will be thinking of you - let us know how you get on.

 

[beautiful_disaster]

Hey Benson! I hope everything went well today and they figured something out for ya! Sorry you have been having such a hard time! But keep us updated which I'm sure you will!!! Take care!

 

[dizzyd]

All the best...keep us up to date. Hope you get some sort of relief. I remember what total exhaustion feels like. Have they suggested surgery before?

 

[BWS1982]

Thanks people.

Well, I had the scope, the doc was running a little late, so I had a nice prolonged period of about 40 minutes where my anxiety-prone mind had a field day with my imagination....well, once was all said and done the scope was only around 5 minutes long. He just barely peaked around up past the descending colon and took a gander at the transverse (the part that goes laterally from right side to left, at the top), virtually EVERYTHING was inflammed to some degree, no patches of healthy colon like in 2006 (2007 scope was similar to this one, much inflammation). I DID get some drugs for it though, unlike the nurses kept telling me, the doc saw that my mom attended with me (as a pharmacist she's been wanting to have a 1 on 1 with the doc to just touch base without me being the messenger all the time, get it straight from his mouth what he's thinking), and due to me having someone with me, he gave some versed and fentanyl (sp?), but not enough to totally knock me out like the last 2 scopes, he wasn't going very far, so instead of being mostly out, it's more like a blur or a dream this time, I was more lucid....I kept hearing him reacting to the screen saying "oh you poor guy............jeez, you poor guy.....look at that, all inflammed there" as he saw everything so inflammed and sore.

He says as far as the findings, he wants to check on the several biopsies he took within the next few days before changing anything or making any bold statements on where we go from here. Just said that if this was a new case and he'd never read my history before and this scope was the first he'd ever done on me, he'd be 60% leaning towards Ulcerative Colitis. But still he says that other markers still suggest Crohns. Anyways, he said the main purpose for this scope was primarily to find out if this is my disease acting up or if my immunosuppressed state has opened the doors for some sort of virus. In the end he's wanting to refer me to a Dr. Katchavarian (that's phoenetically spelled)...one of the top GI's in the state, and is the "Governor" of the American GI Association for Illinois or something (it's a little hazy), he practices at Rush Memorial in downtown Chicago....he's thinking he wants to see a second input on things, not pass me off. Wonder what insurance will say about someone so renowned (even though that shouldn't be a concern of mine). Surgery is NOT out of the question, it's been something I've been the one to bring up in most discussions about my case to the dr's, not them....but this time when I expressed my fear of it again he said well a bag isn't out of the question temporarily so we could do a J pouch.....great. Hopefully like was said above by Mike I can modulate my remicade to find some remission or go to Humira, or something....even try antibiotics again. Last thing this doc said he wants is to put me back on steroids.

To answer you Mike I'm at 5mg/Kg of Remicade, it's a lower dose, and I suggested a higher dose, and he's wanting to get this scope and the biopsy results in first, so a few days before a decision like that.

damn. To the point of the S.T.D. (yeah that's what it's called, Short Term Disability, lovely acronym to use..."hey where were you, you were off work for 2 months?" "I had STD".....lol), the doc said yeah, I'll sign anything you want as far as that sort of issue goes, he felt bad for my anguish at work and all the despair I've got going on, and after seeing my rectum/colon etc...(well most of it) he's seeing why I have so many problems TRYING to work. He said "yeah, many people get disability leaves for small stuff, you're trying to go in this condition. Just bring the papers in I fill 'em out."

YES, some relief!! I can focus on rest and healing up.

There you have it, most of the info that I've found out after this hoopla today. Still woozy after the drugs, not allowed to drive anywhere. Took a 2 hour nap.

Man I don't want to go under the knife, but if that's the only way to get better down the road, so be it. If my colon does come out, I'm going to burn it and watch it cry.

 

[BWS1982]

The above post is long enough, so I'll add this forgotten thought seperately. Those enemas are terrible, I did 1/4 of a bottle for about 2 minutes, then it had to come out, then I did another 1/4 of that one for 2-3 minutes, and it had to come out. Then 25 min later I repeated that, holding them in for even longer. I can tell they are usually meant for people with healthier tissue, not as bad as the Cortico enemas Kev and I took though, but very unpleasant. I was cleaned out well, all I saw exiting was the saline solution from the enema and blood. I got some nice pics of the sigmoid and descending colon, no stool this time, just inflammation.

 

[Guest]

sounds like you really needed this scope and biopsies to happen at this point benson. now at least you'll all find out exactly whats going on, and therefore the best direction to go in.

if that direction turns out to be surgery, it could just be the making of you, your return to a quality of life. as much as we all fear operations, sometimes we do get to the point where we just want someone to take away the part thats hurting.

i hope you dont have to wait too long before you find out the full results.

 

[Wiles]

I'm not trying to convince you to have surgery here, don't get me wrong. I'd explore all my other options before deciding on it. It just sounds like it's something you really don't want to do. I was the same way, and when I ran out of options I still didn't want to have it done. I could have saved myself months of suffering if I had made the decision sooner.

I know I always felt surgery was something I never, ever wanted to do. For a long time it was out of the question for me, it was something I didn't even want to consider as an option. But there came a point where I had tried so many drugs and none of them were helping anymore. I was making frequent trips to the E.R.. So I finally decided to bite the bullet and have surgery. Part of me didn't want surgery because I didn't want to accept that my body was failing me, I didn't want to lose a piece of me that I could never get back. The other part of me was just plain scared, the thought of someone cutting me open and fooling about with my insides scared the crap out of me. It turned out to be not that big of a deal. I had felt so unwell before surgery that the post op pain and discomfort was nothing new. Plus, I had a bunch of cute student nurses looking after me, so it wasn't all bad :ycool:

It's been about a year since my operation, and I don't feel as good as they said I would, but I feel a hell of a lot better than I did. I can actually leave the house without worrying about soiling myself. I still have diarrhoea almost every day, but it's not nearly as bad, and I don't feel like I'm wasting away anymore. Sometimes I think about getting a pouch and forgetting about this crappy disease!

Anyway, I hope your new GI is able to help you out, it sounds like he cares.

 

[Kev]

I would echo what wiles has written. I've heard many folks who have eventually had surgery express regret that it took them so long to face it. The operation I had was a breeze... most I've heard about are.. but there are no guarrantees. I had no complications... other folks have had nothing but, and it wasn't pleasant. I was also told that I could expect my operation to be a cure.
It wasn't. Back to the no guarrantee thingy. but in my case, it was to the point it was nearly life threatening... so I don't regret having the op. Its a personal thing, a decision only one can make for themselves. surgery is neither the bad monster folks fear, nor the mircle cure. But sometimes it is the best choice, OK

 

[Kittee]

I really hope you feel better soon.

 

[Jeff D.]

Good luck Benson. I'm glad that the scope wasn't too bad for you.

 

[BWS1982]

Thanks again. To add the doc at Rush Memorial in Chicago I'm seeing just for a single opinion is spelled Keshavarzian, and it's just for some extra confidence in the next step we take from here. The doc now classifies me as having severe Crohns. He can't rule out U.C. instead of Crohns, though, but wants to do a Prometheus test to rule out U.C., as that'll help IF I need to look at surgery down the road, as Crohns makes surgery a complex decision, and it's a bit more cut and dry with U.C. Who knows, but at least he's calling in a Rx for Cipro and flagyl now, since I saw improvement from those in Oct. of last year. He is having my disabilty papers faxed in today, I'd like to be in remission before returning to work. I told him I can't work, it's just not doable anymore, and he said I don't know how anyone could with your inflammation. Good to have a compassionate person behind the care/guidance.

 

[pennywanna]

Hey Benson,,, wow, you have been thru alot. Tell let you know it is not impossible to have both, I have an older sister just turned 50 and was diagnosed about 10 years ago, and the docs said she had the worse case of Crohn's they had ever seen (she is a bleeder also, Not me, just pain) and also she has Ulcerative Colitis. These confirmed tests take forever. I am on Humira (Allergic to Remicade) and I am also on cipro, and Flagyl. I have been on Cipro for 3 years, but only take 1 a day and flagyl every other day 1 pill to keep the bacteria in check. Bacteria is the stem of crohn's in my opinion, had this disease a long time, and I know what I need and dont. I tell the doctors what to do now, cause they havent a clue...because NOTHING was working. Surgery may have to be done for me also, if the Humira doesnt work. I am fighting it cause I dont want to have it done. You are in a lot of stress too, you need to start taking deep breaths and try not to worry. My mom always says "If everyone put all their problems in a basket, we would take back our own"... good luck to ya, hope you are feeling better real soon!

 

[coachvee]

Hey, have read all of your posts in here - you really deserve a break, as everyone else has said. At least you have been able to get everything sorted for your work, that's always a reassurance. Judging from your doctor's reaction during your scope, you probably are best with surgery... if it is that inflamed... but I hope they can help you with telling you all your options at least.

I hope they can give you some kind of solution soon, keep us posted, and hope that you will feel better soon.

 

[BWS1982]

I'm now a couple days into the antibiotic regimen, no change just yet. But my biggest worry is my job protection, as I'm out of FMLA time. If the company wanted to get rid of me, it's possible I think, but would be very immoral (not that that could deter them).....so the work situation is far from resolved.

I am still sleeping like 12 hours a day and still tired (tried doing just about 8 or 9 too, still no go, so I know I'm not sleeping too much either). Stupid pred sides are slowly leaving me, but with all the bathroom trips/cleaning up and sleeping I do, I feel like I don't have any more free time than when I was working in the first place, ironically.

 

[BWS1982]

Well, I just came back a few hours ago from a double dose of infused Remicade, we'll see if it beats this nearly year old flare...signs should be good that it'll do the trick.

I asked about getting off the Imuran and the doc said yes he wants me off it but wants to get remission first and hopefully via this 10mg/kg Remicade is the right tool.

I am also setting up an appointment with Ali Keshavarzian at Rush Hospital in Chicago soon to get a second opinion like I've said.

What's odd is the results came back from a recent blood workup from Prometheus and it says I've got antibodies from both Crohns AND Ulcerative Colitis....now, I asked the doc, due to what I've seen on this forum, if I could have both, and he says no, "we don't believe that's possible". By "we" I assume he was speaking on behalf of the medical profession. So, I've got one or the other. Initially I was diagnosed with a clear cut Crohns Colitis Dx, but recently because virtually the entire colon is inflammed, UC was brought into the mix as a suspect...he wants the Rush doctor to also put his 2 cents in on these findings.

He was happy to see the majority of my pred sides (the visual ones) have dissipated, namely the moon face and much of my skin issues and thinning hair...

 

[Kittee]

That is great BWS that your Pred affects are almost gone and I think a second opinion is a good idea as well. I really hope your able to get into full remission soon. God knows I want that for myself too lol so I know how you feel.

 

[BWS1982]

Well, the reason my doc says it's not possible (I'm guessing) is because each disease is unique in it's symptomology. Ulcerative is in the colon only, and is very fixable via a Jpouch, is isolated to the colon....

Crohns is "whole-body", resistent to surgery, can be in just the colon, or can be all over, mouth to anus.

When you say "proven" what do you mean? Could you provide details with each diagnosis? How it was proven each existed simultaneously?....when I speak to either my normal GI or this Rush Dr., I'll ask about a double diagnosis in more detail, and why they believe they're mutually exclusive. I'm quite curious about this all, as if surgery is my only alternative, a diagnosis will be a deciding factor.

 

[BWS1982]

Well, I am a week late on this sorta, but I'll try and keep it concise....

I saw Dr. Ali Keshavarzian at Rush Memorial Hospital in Skokie, IL, and he was pretty good, and courteous. It's rare a doc has a 40 minute consultation to answer virutally every question I could mentally muster that's been lingering. So I now have TWO GI docs now, not 1, so I'm special I guess, because this doc wants to see me in the future too. It's a longass drive though, and I hate driving towards the city.

Anyways, he's taking my 125mg Imuran dose down to 75mg, in hopes to eventually eliminate it, since its benefits are not seeming to outweight risks, I've been on it for over half a year and not seeing anything noticable.

I've also started up Sulfasalazine (yeah I'm surprised) because he says it'll have the inflammation aid I could have gotten from Asacol, but without the added diarrhea effect from making the small bowel secrete more fluid. It's one of the oldest IBD meds out there and it's not really a heavy hitter like Remicade, but I'm all for anything new as long as it doesn't involve a scalpel.

If these don't work, he's thinking Cimzia and Actose (a diabetes medication), I'm not very aware of much on the Actose, but we all have heard a bit about Cimzia lately with its recent US approval.

The sad news is his view on Cimzia/Humira working for me. He said he sees about 60% respond from Remicade, and 40% find remission. Well, so far no drastic improvement from Remicade, so either I'm in that 60% (but not remission) or it won't do anything. The sad part is that out of those who do not respond from Remicade, only about 1 in 5 (20%) will respond to Humira/Cimzia....not so great of odds.

He says my antibody issue with Crohns and UC showing up means I have Crohns Colitis and he sees that 30% of the time in patients, so that's not so rare. There's also the Tysabri to try as well he mentioned, so on the good news front there's a few steps before surgery. I DON'T WANT A BAG! :ymad:

----------------------------------Meanwhile---------------------------------------


I'm in the middle of appealing the termination of my disability leave and mystified by the fact that the evidence didn't speak for itself to the disability staff.....I truly believe either A) not all the information was clear or correct or B) they are severely incompetent and don't deserve the right to command such power

I'm bleeding from the ass people! I'm having huge urgency problems, and I've tried working for several months, I was soiling myself a couple times a day, it just doesn't work. It's a horrible job for severe IBD, and my lightheaded spells and extreme fatigue make it worse. I have a garbage can next to my bed at night for times I will not make it in time at all, so I don't go through 10 Depends a day. This is re-damn-diculous, I can't believe I've spent the whole 6 weeks on disability leave DEFENDING WHY I'M ON A DISABILITY LEAVE! Do they want to spend a day with me? Probably not but they obviously need to. Stress DOES NOT help Crohns and they are making this so much worse. I've seen the most mild cases (and that's from the employees themselves) get approved for disability, why am I being given hoops to jump through?!

Luckily my doc as great as he is called the appeals lady and asked exactly what should he send in or write to make this right. He's awesome.

 

[jed]

i've finally had a chance to read through most of this thread, and wow BWS, you really have gone thru some crap.

sending you a big {{MAN HUG}}

that stuff with the disability leave is just dirty. the only people that do those jobs should be people with knowledge in severe medical ailments.

feel for ya bro

 

[elp888]

Hi Benson,

Sorry to hear about your continuing troubles! I can't believe they're giving you such a hard time about disability... as if you don't have enough to worry about! I guess in a strange way I should be happy i'm self-employed, no income at the moment, but no one hassling me either

As for surgery, a bag would be (is?) my worst nightmare too. But, at the same time, surgery might improve your life. My Crohn's is in a different part (ileocecal) than yours, so different symptoms. I've had surgery twice and after the first time I was in remission for 12 years, having a normal life. It was scary and I didn't want it, but it was completely worth it!
I had my second surgery on the 16th of May and after a month I feel almost normal: normal stools, once a day and can eat anything i want...

Again, i can totally understand your hesitation, but it might be worth it...

Good luck!
e.

 

[Kittee]

*hugs*

Hope this works out soon for you. Its ridiculous what they are putting you though.

 

[Isla]

Ya, I had a friend who had a very hard time with getting his disability (though for a very different reason.) That is very cool your doctor is willing to be so accommodating, my primary doc is wonderful too. Without him I would have given up on trying to figure out what was wrong.

I really hope everything works out! I live relatively close to you so if you ever need anything.. just say the word.

 

[BWS1982]

Thanks people, the bureaucracy is insane in this mess, and it better come out all okay. I'm watching for spies and tails when I have to leave the house, not that I am going to amusement parks or parties, but out of curiousity, to see how hard they're willing to push this/me.

 

[soupdragon69]

Benson this is crazy and takes me back to the problems I had last year with the capability procedure my boss brought against me at the time.

They just dont get how much the stress impacts and compounds things!!!! Arrrggghhhh

Its great you have 2 GI docs on your side and sounds like you have some realistic options. I agree with you about a stoma too.

Hang in there. You know where we are when you want to have a yell!

Thinking of you ((hugs))

 

[BWS1982]

*Yells loudly and looks towards England to see Jan's reaction*

 

[soupdragon69]

Jan yells back and waves her soup spoon at Benson ;-)

 

[Creepy Lurker]

Well, the reason my doc says it's not possible (I'm guessing) is because each disease is unique in it's symptomology. Ulcerative is in the colon only, and is very fixable via a Jpouch, is isolated to the colon....

Crohns is "whole-body", resistent to surgery, can be in just the colon, or can be all over, mouth to anus.

When you say "proven" what do you mean? Could you provide details with each diagnosis? How it was proven each existed simultaneously?....when I speak to either my normal GI or this Rush Dr., I'll ask about a double diagnosis in more detail, and why they believe they're mutually exclusive. I'm quite curious about this all, as if surgery is my only alternative, a diagnosis will be a deciding factor.

Also, Crohn's seems to affect patches of the bowel where as UC tends to blanket the entire effected area. I have Crohn's colitis as well.

 

[BWS1982]

Also, Crohn's seems to affect patches of the bowel where as UC tends to blanket the entire effected area. I have Crohn's colitis as well.

Yeah, that's one of the first things I read when initially diagnosed, the problem is that since the disease has progressed, it's blanketed the entire colon, mimicking UC very closely, hence the confusion...but in the end, it's still decided by the Rush Doc that it's "Crohns Colitis" as you have. Not that the other would be a blessing or anything, but surgery has an upper hand when fighting UC, despite me loathing the idea of be cut like a jack-O-lantern (I am heavy into bodybuilding, so yes it seems superficial, but I'm not a shallow person).

 

[BWS1982]

I forgot to mention something sorta intriguing, in that he recommended stopping all fish oil (was doing 2 in the AM and 2 before bed) capsules because they *CAN* lead to more D, so he's wanting any and all culprits hindered. Well, I can't really say I've seen a difference from this, as I've now been off them nearly 2 weeks, but I saw slight improvements (a couple times less per day in frequency and some healthier BM's scattered here and there) starting this last Sunday. Either it could be the giant Remicade infusion, the stopping of fish oil, or possibly (and this one could be a stretch) the commencement of Sulfazine EC, the new med I've had for 11 days....hmm, quite early for the Sulfa to be working already, as it's a cousin (father actually) of Asacol and it takes weeks/months to get effects from that.

I have taken fish oil for about 4 years now give or take a bit, and never noticed correlations between Crohns and the capsules during my 21 months with this disease total. I took them long before Crohns for the health benefits, and I am already upset that the anti-inflammatory and cardiac health properties are absent from my supplementation, but I'll try it if I can gain ground from it. I plan to start them again if I get remission one day, they're too beneficial to skip.