Progress

I finally convinced someone to put me on Remicade for my creepy cutaneous Crohn’s. I’m holding out for this to be a miracle cure. 

 

 

Another Update

Updates these days have been few and far between mostly because of the lack of change in my situation. There have recently been some new developments though, so I thought I should write about them. Also, thank you to everyone who has commented; I have been terrible about replying. 

So, I went a very long time since the last update without any changes in my wound at all. When I started the antibiotics, the drainage slowed down immensely, but never ever stopped completely. Anyway, I ended up losing my insurance for a few months, so I just packed the wound once a day until I could finally afford to go see the doctor again. 

Once I did get insurance again, I decided to skip going back to my surgeon and go to the wound care center, since my surgeon was just doing wound care anyway. I only went there maybe 3 times before my doctor there decided to leave. She ended up referring me to a wound care center at a different hospital and recommending that I get hyperbaric oxygen chamber treatments there. I was told by that hospital that my insurance wouldn’t cover the oxygen treatments if no one had tried a  surgical flap closure before, so he set me up to talk to a plastic surgeon. There is no way I could have afforded the treatments out of my own pocket, because they were $700 per treatment for 40 treatments. 

It’s been almost three years with a chronic wound now, so I figured that trying to surgically close the wound couldn’t hurt. I mean, I just needed to try SOMETHING new, you know? I never had any real faith that this would cure my problem, but I knew for sure that what I had been doing was never going to close my wound by itself. 

After briefly discussing things with the plastic surgeon, I got everything scheduled in a timely matter (which was the complete opposite of the plastic surgeon I had dealt with before). The plan was to just close my wound locally, sewing the muscle layer together as long as it was healthy. Plan B was to take a muscle from my thigh, but luckily Plan A worked fine. 

After surgery, I wasn’t allowed to sit for four whole weeks, so a lot of laying in bed was involved. I had a drain in for two weeks that was mostly annoying because not much drained out for the last week besides some old blood. In fact, everything seemed quite normal at my two week check-up when the drain came out. 

Shortly after my follow-up visit, I finished my course of antibiotics that I was taking (Bactrim AKA SMZ/TMP). I’m not sure if the following was due to coming off the meds or if it was just a fluke, but I started having fevers above 101 and a lot of drainage from the incision. The drainage looked mostly like bright red blood, so I decided just to go back to the hospital. 

In the hospital, they did some bloodwork, a CT scan, and some cultures. I still have free fluid in my pelvis, and no one can really tell me why. My blood culture came back negative, but I was told I had MRSA, so I was admitted and put in contact isolation. The good thing about contact isolation is you don’t have to deal with having a roommate. Anyway, they put me on IV vancomycin, which is a really harsh antibiotic that they use to treat MRSA. I had 3 different IV catheters in like 3 days, because it kept screwing up my veins. After 3 days of bleeding a lot and feeling miserable because of the medicine, I was allowed to go home. 

I recently had my 4 week follow up appointment with the surgeon. He took the stitches out finally, and a lot of the wound  actually seems to be healing alright. I still have this one little spot, however, that is really weird. It’s like a red, raised portion of skin; it’s not where my rectum used to be, but it’s higher up on my gluteal cleft where all of this drainage started pouring out of me in the very beginning of my troubles. Where the raised patch is, there is a tiny hole that looks like a drill hole, and it is draining a pus-like fluid. So now I feel like I am just back to where I started. 

The surgeon did say that it could be fat necrosis instead of pus, but I am thinking that it’s something altogether different since I have had this issue for so long now. I saw a general surgeon in the hospital that seemed to think I could possibly have a hidden piece of rectum left in my body causing these issues. What he was saying made sense at least in the fact that he didn’t think any amount of antibiotics or wound closures were going to fix me, but he did say that it would be a very difficult and involved surgery to find it IF that was even the cause. Also, my plastic surgeon sent out a biopsy of some of the wound tissue, and it came back with evidence of cutaneous Crohn’s. So my next step is to go to my GI doctor and beg to finally be put on some sort of Crohn’s medication. 

I believe if I am given meds for my Crohn’s that this problem can actually get resolved. If it happens, it will definitely be bittersweet though, because I have been asking for Crohn’s meds since the very beginning and they all denied me because of the immune-suppressing side effects combined with my supposed infection. I just can’t accept that answer anymore, because I have been on like ten different antibiotics over the course of many months and there is still no improvement. There is WITHOUT A DOUBT an underlying cause that needs to be treated!!! This is what I have been trying to get them to figure out for 3 years!!!!!! I am just praying now that someone will GET it and treat me like the complicated case that I am. 

Update

I figured I should update since it’s been quite a while since my last post and a lot has happened. I’ll try to keep it short though.

For one thing, Crohn’s is the only disease I have as far as anyone knows. There were some ideas that I could have Behçet’s due to the ulcers I had on my skin and eyes, but I guess they were due to severe Crohn’s plus the stress of infection.

In September 2012, I had really hit a breaking point where pain was concerned. It was getting very difficult to walk, stand, sit, or basically do anything but lie down on my side. I basically begged my GI to help me. She sent me to the Johns Hopkins emergency room. The GI team decided to debride my wounds and basically make the two small wounds into one very large wound. After that, they attempted to place a wound vac, but it couldn’t get a good seal, and it just wasn’t working out.

Since the debridement allowed my wound to drain freely, it actually took away some of the pain and the weird symptoms I had been having. I was able to walk a little more freely, but the wound was huge and the inside was still really painful. They started me with pulse lavage treatments to clean out the wound. I feel like they didn’t do much, because there was literally so much drainage that it was a constant flow. They also treated the wound with silver nitrate to get rid of hypergranulation tissue; it hurt like hell, but they gave me some lidocaine beforehand which made it easier.

Most of the time spent between then and now was just doing that and healing very, very slowly. However, the purulent drainage just kept flowing. Eventually, they decided to put me on penicillin, and the drainage just went down to almost nothing. It seemed ridiculous to have waited so long to try antibiotics again; I was told I didn’t need them after I had IV antibiotics in the hospital, because they assumed my wound would be clean after debridement. There were no obvious tracts for drainage, so I guess I can’t blame them. Plus, I had been on antibiotics before with no improvement. This time though, there was a huge improvement.

After starting the penicillin, I just went to the clinic every week for silver nitrate treatments, and the wound started healing better than ever, but still very slowly. I was on penicillin for at least four months. Now, I am off medications and not doing the treatments any longer (or at least that often). However, I STILL have a rectal wound and it STILL has small amounts of drainage. I pack it with gauze every day, and I still have pain. To think, this all started on December 11, 2011, and I STILL have a wound. It’s pretty depressing, and  all I can do is hope that it goes away soon.

The worst thing is that I will no longer be eligible for my health insurance in a few days. I don’t really know what to do besides wait it out and hope I don’t have major problems until I can get something cheaper in a few months.

Also, one thing I didn’t mention was my encounter with a plastic surgeon. After my wound was debrided, they thought they’d give me muscle flap surgery to fast forward the healing process. The plastic surgeon I dealt with was really the worst doctor I ever dealt with. I mean, I’m sure he performed great surgery, but otherwise he was really the worst. Basically, I was jerked around for months without even being scheduled for surgery. I kept calling and his assistant would just tell me she couldn’t schedule my surgery until the paperwork was done; well, the paperwork literally took weeks to get off of his desk (even though my GI surgeon had wanted the muscle flap done while I was still hospitalized). I even had appointments and emails with him where he kept saying he was placing me at number one priority, but after he’d tell me that he would go back to ignoring me for more weeks. I eventually had to just break off contact with him, and my GI surgeon told me I probably didn’t need the flap anymore anyway because it had been so long. I’m glad it didn’t happen, because I’m almost 100% certain it would have failed since the drainage came back full force, but it was still the worst experience I had with a doctor and office. I was really made to feel like I didn’t matter at all, when all of my other doctors were always prompt with callbacks and never left me hanging.

Anyway, that’s basically where I am now. Just waiting and waiting forever for this wound to heal so I can move on with my life.

Life Confuses Me

The vasculitis rheumatologist doesn’t think I have Behcet’s disease, because he believes that all of my extraintestinal symptoms can be explained by a complicated, severe case of Crohn’s. I am very grateful to not have a new disease with a whole new set of things to worry about, but I am also kind of disappointed that even though I do not have a colon anymore, Crohn’s is still attacking my body.

There is good news though. I was approved for Social Security disability for the horrible surgery complications I’ve been dealing with. This will hopefully take some of the financial burden away…

This is putting a strain on my relationship, and it’s killing me…

New problems?

I’ve been dealing with a whole new buttload of issues lately due to my wonderful immune system. I am almost dealing with this worse than my past bowel problems, because this is a very different kind of pain. I’m no longer a prisoner of the bathroom, but I feel like I am a prisoner of the house, of the bed, of a pain that keeps me from being able to sit/stand/walk like a normal me should be able to. Not to mention the other feelings of weakness, malaise, and general uselessness.

First of all, my proctectomy STILL hasn’t healed. Not one bit. It might even be worse now. I don’t know. All I know is that I feel like all of these new doctors that I’ve been pawned off on don’t care as much and are jerking me around making me wait a ridiculous amount of time to get this sorted out. I had my first consult with a plastic surgeon on April 26th. He wanted me to have a quick checkup with a colorectal surgeon that he works with and told me that he wanted to hurry the process up for me, but I couldn’t get an appointment with that surgeon until June 11th. I called the plastic surgeon multiple times for help getting a sooner appointment and heard nothing, so I was forced to deal with it. The colorectal surgeon seemed nice, and he ordered an extensive pelvic MRI (which probably should have been ordered a lot sooner) and told me that my surgery would get scheduled and I should see the plastic surgeon again. I called after a while to get my surgery date and they said, “No, we can’t schedule you until you see the plastic surgeon again.” Okay… So I get my MRI and see him again July 12th. He says he’ll try to get me into the operating room before the end of July even though he’s busy, but he still hasn’t completed the PAPERWORK to even try to start scheduling me.

He also gave me a hard time for asking for percocet for a two painful, open, draining ass wounds when I’ve basically been poisoning myself with high dosages of ibuprofen that don’t take away my pain, even though I keep enduring the same or more pain for months and months without being fixed. AND he only gave me 30 tablets with one refill on the prescription, but the pharmacy does not honor refills on percocet, and I have been struggling a month later to get him to write me a prescription so I can get something he already authorized when the original prescription only should have lasted me a week. I’ve had to ration taking pills and feeling okay. That’s just not right.

On top of all this pre-existing bullcrap, I’ve got even more to deal with now. A very painful crop of ulcers have appeared on my labia, LIKE I NEEDED MORE PAIN DOWN THERE!!!, and it hurts even more to walk/sit/stand and burns like hell to pee. I visited my gynecologist who scared me into thinking I had a herpes infection that would never die, but the cultures and bloodwork for both herpes simplex viruses came back negative. That means it is very possible that I have a rare disease called Behcet’s disease which could end up being pretty serious. It is another autoimmune disease that attacks the blood vessels, but not much is known about it, and there is no clear cut test to find out if I have it.

I’ve been reading up on Behcet’s, and I seem to have a good amount of symptoms. I have the genital ulcers, some leg lesions, joint pain, and I had some strange eye lesions that my ophthalmologist dismissed as a random “hypersensitivity to microorganisms” but not necessarily an infection. The only typical thing I’m not really dealing with right now is mouth ulcers, but I had a pretty bad bout of them last summer. Most of these things, I had just automatically attributed to Crohn’s and overlooked, but now I don’t know. Unfortunately, I can’t get an appointment with the vasculitis center until I am able to get all related medical records sent there plus a referral letter; even then, they have to review my case and decide if they are going to see me. Even THEN, I am told that I can’t really be treated with prednisone right now due to my infected, non-healing wound. Vicious circle of BLAH.

The only other news is that I had my first blowout ever, over 2 years after ileostomy surgery. Not bad. I am pretty sure it’s because I didn’t change my appliance for like…17 days (exaggerated, but not by much) and then ate McDonald’s. I felt a sudden pain in my skin (like adhesive ripping off) while in the car, sat around for 15-20 minutes, and went to the bathroom when I got home. I didn’t even realized it had blown out the side of my wafer, until I physically looked at it. I was like, “Why are things wet?” But yeah, I’ve been neglecting changing things often enough, because of all the crap I’m going through.

I guess that’s enough bitching for now. Please, please, please make this over with soon.

This has to have an end… right?

So, I know I haven’t updated this in a while, but I didn’t realize how close to the surgery it was when I made my last update. Basically, the reason why I haven’t had the urge to make any updates is because my wound hasn’t healed. At all. None. I’ve just been living with an open, draining, pus-filled butt wound for six months. Two of them, in fact. I’m just done with all of this, and I’m soooo ready to be a normal person again.

Anyway… since my last post, I went through a bunch of different kinds of packing in the wound, some tingling sensation they called “electro-stimulation”, some guy shined an infrared light on it for like 30 seconds, and oh…they tried more different kinds of packing.

When the wound care specialist/physical therapy/not a doctor guy I was seeing couldn’t help me anymore and my current surgeon decided she couldn’t help me anymore either, I was referred to a wound care center with special wound care doctors in a special wound care facility with special wound care nurses. I had my hopes up with all the fancy wound-y sounding stuff, but honestly it was the biggest disappointment. First of all, all they did was put a different kind of packing in and give me checkups like 4 weeks apart. I repeatedly asked many different people about trying a wound vac; all seemed to agree it would be way better than the packing but a wound vac has yet to touch my body. Everyone seemed to think they *maybe* wouldn’t be able to get a seal, but no one even *tried*. This device could have potentially saved my tissue and skin from all the terrible drainage, but instead I got some dressing that is supposed to “wick away” the moisture…. Doesn’t really work when the drainage soaks through a bunch of menstrual pads per day. The only good thing that may have come out of what seems like a waste of time was a referral to a reconstructive surgeon.

So I had an appointment with the reconstructive surgeon, and it only lasted like 5 minutes or whatever, but instead of just pushing me to another doctor and not wanting me to come back, he seemed like he really was  going to fix me. He did refer me to a colorectal surgeon he works closely with because they are probably going to do my surgery together. I guess he wanted someone with Crohn’s experience to take a look at my CT scan and wound to make sure there weren’t any freaky things going on. My appointment with that surgeon was last week and seemed to go pretty well too.

I haven’t gotten a date for my surgery yet, but I got a very brief explanation so far of what’s supposed to happen. They are probably going to take the gracilis muscle out of my inner thigh, scrape up the innards of my butt, and insert the muscle. Apparently, this will make it heal. They seemed confident. I have no choice but to trust. Now is just another waiting game until it happens.

I also have to get an MRI in, uh… two days. I’ve never done that before. I’m pretty sure it’s going to suck, if not only because it hurts me to lay in one spot for a long time, and I can’t have anything at all by mouth 6 hours before the procedure.

The last thing I wanted to mention are these new symptoms I’ve been having within the past week. I have been having really sore joints. I’ve never felt anything like this before. My wrists, ankles, knees, elbows, hips, fingers, toes, spine… all killing me whenever my meds wear off. I am pretty sure I also have a more aggressive fever. And I’m getting some skin involvement. Pretty sure I have an “erythema nodosum” bump on my shin. Had just one a few years back that resolved with remicade, but I’m no longer on Crohn’s meds anymore. I’m just worried that I’m having all these Crohn’s symptoms, yet no intestinal involvement. Should I be worried that my immune system is screwed up in yet another way? How am I supposed to decide which doctor to go to now? I’m definitely not in my comfort zone anymore.

Winging It

A few days ago, I had another checkup. My deep wound has a good amount of pus boiling inside of it. Awesome. The visit involved a pretty torturous wipe out with gauze. My surgeon recommended I go to physical therapy for “pulse lavage.” When I went, I found out that it’s basically a tube with a little rubber cone on the end where water comes out and shoots into the wound and vacuum suction pulls it back out with the debris to wash to wound. I basically lasted 3-5 whole seconds before I couldn’t take it anymore. I was nervous to begin with, but I was hoping it would be a moderately soothing experience, but I didn’t even really feel the water, just pain. So the guy who was doing it is also a wound care specialist, and he gave me a different packing to put in the wound. I’ve used it before on my stoma; it’s called aquacel and it’s basically a silver dressing that promotes healing and soaks up debris. He also gave me an antiseptic wound spray to spray all up in there. The packing hurts a lot less than stuffing all that gauze in there, but it is also very expensive and not covered by insurance. I’m going back tomorrow to see if we need to make any changes.

Pain, pain go away…

I talked to my surgeon on the phone yesterday and told her how bad it hurt with the packing in. It’s like I can’t sit, lay down, walk, do anything! The packing also fell out as soon as I got up to pee two days in a row; just plopped right out into the toilet. Her advice was to try a little less packing and see if it helps, and she mailed me another prescription for dilaudid since I’m going to run out before my next appointment.

So last night, instead of struggling to pack the wound where my butthole used to be with a 4×4 gauze, we cut that gauze in half and packed it. Before, half was hanging out, and I think that’s why it fell out twice. Now, most of it goes in, but it stays in better. As for the pain, we’ll see if it’s any different. Last night and this morning were pretty terrible, but it has subsided a little this evening. I still think there is really about the same amount of packing inside the wound, so it still hurts and it is still excruciating to go through the actual packing process. I really dread that every single night, so I hope that it heals quickly, but I still get a lot of bloody drainage as well.

I didn’t really know what to expect going into this surgery and knowing that the wound would have to stay open. I guess I didn’t expect it to be this painful. It definitely makes me wish everything was taken out at once and I was all sewn up, but then I probably would be in a different place in life, and I wouldn’t want that.

Christ.

Just FYI, last night’s packing change was a NIGHTMARE. It was soooo painful. There wasn’t any bleeding or anything, but it was probably some of the worst pain I’ve ever felt in my life. I had to tell Rob to stop. I could not tolerate it at all. I literally sobbed after it was finished, and I’ve always thought myself to have a high pain tolerance.

Today, Rob got off the hook, because I had a follow-up appointment with my doctor and she changed the packing. Not as bad as last night, but still very painful. I was very tense and nervous the entire time. She also removed the drain which was no big deal in comparison.

Anyway, I got her to write me a prescription for a stronger pain medication. The percocet just was not cutting it, so she wrote me a prescription for dilaudid. I’m hoping that this helps a lot more, because I do NOT want to go through another packing change like that. Ever.

Phew…

I just want to say, tonight’s packing change went much better than last night’s. We did everything the same, but I didn’t bleed all over the place like before. I think the extreme pain from last night was due to the bleeding and the pressure that built up inside from all the blood. So…not that bad. Hopefully, it continues to go more and more smooth from now on.