Update

October 10, 2013

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.

New problems?

August 3, 2012

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.

Winging It

December 31, 2011

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…

December 23, 2011

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.

December 19, 2011

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…

December 18, 2011

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.

Buttpocalypse 2011

December 14, 2011

So, it’s finally here. December 13th, 2011 was the last day I’ll ever have a butthole. Just to reiterate, I had already had a permanent ileostomy and total colectomy, but a very small portion of my rectal stump and anus had been left intact so I wouldn’t have to deal with a nonhealing wound at the time. That was a year and a half ago. More recently, I had been having complications with the rectal stump. There was purulent (pus) discharge from my anus and my biggest concern was an abscess that had formed a draining tract to the outside of the middle of my buttcrack. It was some painful stuff, plus sooo annoying to deal with all that discharge.

But, uh, yeah. Today: no butthole. The worst thing about it was the fact that I had infected tissue, so my surgeon had to leave the wound partially open and pack it. There’s also a penrose drain in for a couple of days. But yeah, she just cut it right out and packed it right up. I spent the night at the hospital and had my first dressing change this morning, which explains why I’m up at 7:00am. It wasn’t TOO bad, mostly just scary to think about. I have a lot of healing left to do though.

I can’t end the post without giving a shout out to my boyfriend, Rob. He has been right there beside me since the beginning of this whole infection mess. He’s helped me change dressings and was SO brave about it even though it probably pained him as much as it pained me. Plus, he’s right here beside me sleeping in my hospital room. I couldn’t ask for a better support.

So, until recently, I have been living pretty uneventfully for a while after surgery. Like I’ve mentioned before, actually having the ileostomy has made my life much better than before. Crohn’s disease doesn’t like to give up though. I still have my rectal stump that was left in after my initial surgery, and I’ve started having some big issues with that.

I noticed there was a huge problem when I was getting a lot of irritation in the crack of my butt. I had a lot of discharge from my rectum, but I just thought that was normal mucus discharge and that the irritation was from moisture. I thought that until I actually had a hole in the crack of my butt. A deep hole. A hole that I couldn’t really see the end of. That was oozing pus. Pretty freaking nasty.

So I went to my doctors (who I love, by the way, because they always take care of me so well), and I was sent to get a CT scan. The results showed that I had an abscess around my rectum. After consulting with my surgeon, she surgically cut the hole open more so that it drained easier, and it’s actually been less painful since then. However, now I have a gaping wound on my butt that I have to keep gauze dressing over.

While I was under anesthesia, she took a look at my remaining rectum with a scope. Apparently, Crohn’s is attacking it so badly, that it basically ruined the closure from my surgery. A little hole must have formed somewhere that is now allowing bacteria from my intestines leak into my pelvic cavity.

My surgeon tells me that I won’t be able to avoid having yet another surgery to remove the remaining part of my rectum and anal sphincter. I’m pretty nervous about it. She told me that she’s not sure she’ll be able to close the wound surgically because of the bad infection. I think having my rectum removed and having another large, gaping wound is what I’m most afraid of. We’re hoping to do the surgery during my break from school, which is pretty soon. So we’ll see how it goes, I guess…

I’m currently on a bunch of antibiotics and keeping up with dressing this really scary looking, draining open wound. I’m pretty nervous about having to go through this yet again. I guess this means it will be gone for good though. Finally.

Happy New Year!

January 2, 2011

A day late maybe, but still.

2010 was a completely life-changing year for me. The beginning of the year was pretty rough, and it really pushed me to make some tough decisions about my health. There were a lot of tears and a lot of thinking about what my future would be like if I elected to do surgery… or if I would even have a future if I didn’t.

Luckily, I believe I 100% made the correct choice. After my surgery, everything fell into place. I have a job I like, great friends, a great boyfriend… and most importantly, I am able to enjoy them all because I am healthy enough to do so.

I have high hopes for 2011. I just want to be happy and live my life like I’ve never been able to do before!

Relationships and Sex

November 28, 2010

If you have an ostomy or are facing having ostomy surgery in the future and you are worried that the dating or sexual part of your life will be nonexistent because of it, DO NOT think that way! Trust me, if you have a positive attitude and you accept yourself for who you are, the right partner will not care about your ostomy. There are nonjudgmental people out there who will love you and be attracted to you like you deserve.

I was never one to be involved with the dating scene before my surgery, because I was so sick all of the time with Crohn’s disease. My first two relationships were with guys I had already been friends with for a while, but ultimately they didn’t work out for one reason or another. Eventually though, I got so sick that I needed to get ostomy surgery. At this point in my life, I was single. Naturally, I was worried about how I could ever meet a guy and tell him about my ostomy.

Well, less than a year after surgery, I was able to date someone, tell them about my ostomy, get asked to be in a steady relationship with that person, and have a sexual relationship with that person. My attitude towards my ostomy was that it made me feel like a healthy, happy person and that it was no big deal, so his reaction was also that it was a good thing and no big deal.

Of course, after I told him, I was still worried about the sexual aspect. I was unsure if he had completely understood me since he had never heard of an ileostomy before I told him, but he reassured me that he did. I was excited to start a sexual relationship though, and I was completely comfortable with my own body, so we just got to that point like a normal couple. I made sure the ostomy was empty first, and I put a hand over it when it seemed necessary. I didn’t use any fancy covers or anything like that. My ostomy is now a part of my naked body, and I feel that it should be accepted as such.

I have to reiterate that this is my experience *less than a year after surgery!* It may not work like that for everyone, just as it wouldn’t work like that for everyone without an ostomy, but the surgery is not a reason to stop trying. The ostomy is not a reason to give up on love or on anything in life. You can do anything you want, so don’t be afraid to get out there and do it!