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.

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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.

Slightly Traumatic

December 17, 2011

I spent two nights in the hospital, and I’m home now. The biggest thing to deal with now is wound care and pain management. I still have the penrose drains in until Monday when I have my recheck appointment.

Basically, I have two wounds. I have the smaller wound where the draining tract to my abscess was in the middle of my buttcrack; my surgeon made it a little deeper and scraped out the granulation tissue. Then I have the deeper wound where my rectum and anus were removed. Both need to be packed daily with gauze and “Intrasite” wound gel.

Last night was the first night Rob had to change out the packing. He has been dealing with the smaller wound for a while now, but the deeper one is new. He watched the surgeon do it in the hospital, and it’s a simple task, but it’s still pretty daunting. An entire 4×4 gauze fits into that wound, and it’s a pretty painful experience to go through.

He took out the dressing and I took a shower to clean it off. After I showered, it started bleeding a good amount and didn’t want to stop, which made it difficult to insert the packing. It was just extremely frustrating and slightly scary.

Then, a little while after, the packing became extremely painful. Like, I was shaking painful. It was really awful. I felt like I could hardly move. But then, I adjusted position, and it felt like some more blood came out and I felt immediately more comfortable. I don’t know. It eventually stopped bleeding, but damn.

I’m hoping tonight goes much smoother, but we’ll see.

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!

WHOOOAAA!

August 30, 2010

I just flipped the television channel and saw a commercial for ostomy supplies. I probably would have never even noticed before. Interesting. 😛