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I hate to make my first post here a rant, but yet another sleepless pre-op night has me in a dour mood.

I was first diagnosed as indeterminate UC/Crohns back in 2004, but after about a year of almost monthly flare-ups, I managed to stay asymptomatic up until September of 2012 (and strangely enough I was completely un-medicated for the vast majority of this time).

Flash-forward to a year and a half ago, I have just begun my Ph.D program (in the humanities) when I get my first flare in years. So on the second week of courses I check myself into the student health center looking for a referral (which is how my university insurance works). Instead, I almost pass out when they take my blood pressure, leading to nurses trying to get an IV in me so I can start getting re-hydrated. Unfortunately, due to my extreme state of dehydration, coupled with my overall condition of being a notoriously "bad stick," this takes them a little over two hours, with four different nurses throwing up their hands and leaving the room in frustration. Eventually, a triage unit nurse from the main hospital who happened to be on her break gets called in and I am finally get an IV going. Did I mention I loathe needles and have just about the lowest pain tolerance imaginable?

Anyway, after being basically stored in a closet from noon to about 7 pm, a bed has finally opened up for me and my new IBD doctor and I begin many fruitless attempts to get my colon to calm down. After two and a half weeks of my condition actually worsening coupled with the usual non-stop battery of tests/procedures, I get the news that I need my colon out, and it needs to come out soon. He also states that he is fairly confident that my condition is UC, and not Crohns. I get put on the surgery schedule as an add on for the next day, but end up getting bumped due to complications with the last surgery on that day's schedule. It also just so happened that this particular week was my wife's first week at her new job (we had come out from California in the preceding moth), and she missed that day at work to be with me/keep my family back in California apprised of my progress. They then tell me that I am now officially on the schedule for the next day at 2 in the afternoon, so I tell my wife not to take the whole day, but just try to leave work at around noon or so.
Unfortunately, I actually ended up getting bumped up to a 10:00 surgery, at which point my nerves begin to unravel. It was only two days earlier that I had even learned that a person CAN have their entire lower intestine removed, and the day of limbo brought all of the psychological momentum I had built up (OMG medicine not working, OMG colonoscopy shows one of the most inflamed intestines the doc's ever seen, OMG need crazy sounding surgery that I never new existed... day of quiet reflection and doubt).

Already it seems I've written more than I had planned to and I haven't even finished the background; a crime worthy of an academic I suppose. To wrap up the now long-winded introduction, after being given an injection of the most powerful anti-anxiety medication I have ever heard from, my surgery goes exceedingly well. Coupled with the recovery I did, of course, have to take a medical leave of absence from my program for the Fall quarter, but the next two go pretty smoothly, all things considered. In fact, I spent the majority of that Summer living in Japan to brush up on my Japanese, and nothing went even remotely wrong while there, except for the fact that I could not for the life of me get my output to be anything but pure liquid (I'm told this is not that unusual for people living in a foreign country with foreign bacteria).

After getting back to Chicago, I undergo my J pouch creation surgery with just enough time to recover before classes start up. With the caveat that a raised high blood cell count kept me hospitalized for an extra week after I was projected to go home, once again everything goes amazingly, and I schedule my takedown for the Winter Break, at which point my rant begins.

As always, the surgery itself goes very well, and at first everything progresses about as I had expected: unpleasant, perhaps, but not unbearable. It takes my body a while to bring my bowl movements down to about 12 per day (the cutoff my surgeon prefers for release)so I am stuck in the hospital from Dec 15th (surgery date) until Dec. 22nd. After going home, however, I begin to develop an excruciating pain around my perianal area and within whatever is left of my rectum/cuff. At first, I chalk this up to normal post-opp burning, but it quickly develops into seething agony to the point where if at any time I am not flat on my back my pain level is a 9 or a 10.It is, however, Christmas Eve, and I really don't feel like spending Christmas in the hospital, so I decide not to call my surgeon until the 26th. Unfortunately, my surgeon, his team, and his nurse all had decided to take a vacation on the 26th and 27th, meaning I can only get a hold of the general surgical nurse until the following Monday (the 30th). This individual gives me the following "helpful" advice:

Nurse: Well, you can go to the emergency room if you want.
Me: (Internal monologue: Gee, really? I can go to the emergency room for health issues,what a great help you are!) Well, do you think I should come in?
Nurse: I can't answer that.
Me: Wonderful.

Over the weekend, the horrific pain is joined by almost a non-stop fountain of blood pouring from my pouch. Finally, on Monday I get through to my surgeon's nurse who tells me to come in, go to the ER, and they will admit me through there. At this point, my prescription for Vicodin has almost completely run out, and the thought of having to deal without sans any real pain medication makes me to quickly agree. When I arrive, the pain from just the trip there has put me near the point of blacking out from the pain. Fortunately, the ER was told that I would be coming, so my stint in the waiting room was mercifully brief. After hearing my agony-fueled moans for about 20 minutes, someone comes by and gives me a full mg of Dilaudid (Hydromorphone for those who speak pharm-tech), which immediately helps with the pain.After waiting for about three hours, a couple of my surgeon's lackeys come by (that's a bit harsh, I actually like the whole team quite a bit), examine my anus, and have me sent off for an MRI. After releasing my bowels about 3 times all over the gurney on the long trip through the labyrinth that is my hospital, I get the MRI done, and get sent back to the ER and my wife (although shes is not appearing frequently in my narrative, rest assured she was with me every step of this journey), at which point they give me another mg of Dilaudid. After another 2 hour wait (now about 10 pm), the doctors return and I get fully admitted.

Once I arrive on the floor, however the asinine nature of the hospital's policy manifests itself. After I send my wife and mother (who had flown in from CA) back to my apartment, I am told by my floor nurse that for my pain I can have a whole two Vicodin every six hours. You. Cannot. Be. Serious. I have been taking two Vicodin every 4 hours at home, and my pain is so bad I checked myself into the hospital. It's possible that the nurses assumed I was just trying to score pain meds, which I suppose is understandable, but after living in abject misery for a week now I am in no mood to think things through logically or give anyone the benefit of the doubt, and plead with the nurses to let me talk to someone who can authorize something stronger. At around 2 am, I finally get someone to come in who authorizes me to get a whopping .2 mg of Dilaudid every 4 hours, which does about as much as the two Vicodin would have done, ie nothing. The next day my surgeon eventually shows up, says my MRI looked fine, and he has no idea what is causing the pain. He does relay to me that I have at least two anal fissures, but he doesn't think that is the root of the problem; essentially, he says they should be painful, but not to the point where jumping out the nearest window seems like a plausible cure. At this point I'm crushed. Odd as it might sound, I was hoping against hope for an abscess, or at least something else to explain the agony I'm in. Instead I get the dreaded "we need more tests" line. Furthermore, he is unwilling to up my pain meds at that time, meaning another night/day of excruciating pain.

The next day, Jan. 2nd I believe, I get taken in for a scope, a procedure for which they actually had to put me completely under due to the pain. After waking up, I see the surgeon who tells me that not only do I have two of the worst looking anal fissures he has ever seen (in his 30 years of experience), but also that both the fissures and my cuff are covered in small ulcers, again the worst he has ever seen in someone so fresh from the takedown. He now suspects that, despite all previous evidence to the contrary, I most likely have Crohns and not UC. Hurray. My GI doc, however, disagrees with this assessment, but both are united in their recommendation that I get a temporary diversion to help give everything time to heal. This is done the next day, and as always, all goes well. This unexpected hospitalization and recovery, however, means that once again I am unable to attend classes for the quarter, though this time they stick me in a couple of independent reading courses to keep me from taking another leave.

They release me from the hospital around the 15th of January and schedule a more thorough pouchoscopy for the beginning of February, after which my surgeon and doctor will make a recommendation to either try the takedown again, or just put me on a permanent ileostomy. At this point, I am fairly hopeful that I will be in good enough shape to attend classes in the Spring (which begins March 31st) assuming that whatever procedure they end up opting for will be over and done with by then..

Unfortunately, my surgeon and my doctor of of two minds on what should be done, so they convene a panel of everyone on the staff who works with j pouches/UC to break their deadlock. By the time they make up their minds to give the takedown another shot, however, early February has become late February. Additionally, in order for my surgeon to sign off on this, he stipulates that I need to be put on Humira for at least two weeks before he'll operate. This, however, requires my insurance company's approval, which I 'm told might take two weeks. After three weeks have gone by and I have still heard nothing back from my contacts with my surgeon and doctor, one of the nurses decides to try and track down what the hold up is. As it just so happens, I was actually approved by my insurance two weeks prior, and they had given the OK for the local pharmacy to set me up. But they also, for whatever reason, decided not to bother to tell this to anyone, so when the local pharmacy couldn't fill the prescriptionthey sent it over to OptimRX. Their people, in the most infuriating bit to date, got the prescription, didn't have me on file, and decided that the best thing to do was just ignore it. So, for almost 2 weeks, I was only a phone call that I didn't-know-I-had-to-make away from getting the infernal medication and procuring a surgery date. By this time, of course, any hopes for me to even get a date in March at all had been completely dashed, and my procedure gets pushed back to April 3rd. This, of course, means that I will have to miss ANOTHER quarter of classwork while I am again given independent reading courses.

Last week, my Humira finally arrives. Did I mention I have always had a phobia of needles and have virtually no pain tolerance? Due to the rushed timing of all of this, I am forced to give the loading dose to myself, which, due to the fact that my now constant hospitalizations have removed every ounce of fat from my body, was a nightmare. The fourth and final dose hurt so bad that my reaction was to tear the needle away from me as quickly as possibly, leading to about half of the drug being sprayed across my living room. To top it all off, in my pre-opp visit, my surgeon went to great lengths to warn me that what happened last time is likely to happen again, Humira or no, at which point I would need my 6th major surgery in a year and a half.

Between the physical and mental exhaustion of the pending surgery and the continued disruption of my graduate program, I am about at my wit's end. In all honesty, though, things could be much worse. For starters, my advisors have been enormously understanding throughout my ordeal, and the department has made every effort to help me cope with what has been going on. I also am fortunate to have a VERY strong insurance plan (at least when it comes to traumatic illness) with no deductible and a laughably low maximum out of pocket. Most importantly, however, I have a loving and sympathetic wife who supports me in every way imaginable.

That was certainly longer than I had planned, and I want to thank anyone who managed to slog through the almost assuredly self-pity laced account of my history with this condition. Just typing the whole thing out has been at lest somewhat therapeutic.

Still, the uncertain nature of what's in store for me has left me emotionally drained. Will I need another surgery after this one? Will I ever recover? What will happen if I need to stay on Humira indefinitely? I will undoubtedly have to spend at least a year in Japan doing research and while their government has at least OK'd the drug, getting the Japanese government to go along with my prescription (to say nothing of the logistics of procuring it while there) is no easy task as I understand it.

Thanks again for reading,
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So. Quite the ringer, huh? Sounds awful.

I wish I could promise no more surgery and nothing but healing from this point out, but, of course, I cannot.

What I can say is, first of all, thank God for your wife, good health insurance, and an understanding department! (My hubby was completing his Ph.D. when I crashed and burned the first time; he had to take compassionate leave.) Secondly, hang in there. Let's hope the hills level out and things do get better. You certainly aren't the only one who struggles with an of these issues and feelings, so do feel free to vent here!

Best,
Gin
I'm sorry to read of your terrible experience, but yes, this is the place to vent it.

My daughter is on Humira for indeterminate colitis, and it really has worked for her, but Humira is THE most burning of meds out there. She prefers the syringes over the pens, though, for whatever reason, she says when I give her the syringe shots, it hurts less. Also, we use Emla cream to numb, ice over the site before injection, then a "Buzzy" to continue the ice/numbing.

Hope your luck turns around soon.
Welcome to the j-pouch group. You found the best place to vent. A lot of us have been through nightmares and understand how you feel. They tell us the surgeries are going to "cure" us and then all hell breaks loose for some of us.

All we can do is all that we can do. Along the way there are often difficult choices to make. The options we have to choose from are not options we want, it's like the lessor of undesirable options.

Hopefully your latest plan will work and you can finish your doctorate and your life will go forward as planned. Smiler

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