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.

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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.

You Never Know

January 9, 2011

The strangest thing happened yesterday at work. I work at a veterinary clinic, and one of the veterinarians who knows that I have an ostomy came up to me and asked if I had any extra supplies. Apparently, one of her clients had an ostomy and sprung a leak. When I took my supplies in the room in my little Coloplast bag he looked so shocked. I am sure he was surprised to find out that someone working there had an ostomy; he was probably even more surprised to see how young I was. I mean, I was shocked to even be asked that question! Turns out, he taped his up and fixed the problem so didn’t need to use any of my supplies, but still. It goes to show that you really never know when you’re talking to an ostomate.

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!

Life

October 17, 2010

So, the reason I haven’t really posted lately is because my life feels pretty normal right now. It is amazing what becomes your “normal” when you are sick with IBD. IBD “normal” is nothing like what actual normal people experience. I don’t think anyone who has been healthy their whole lives can really, truly appreciate how amazing it is.

There is no more pain, and there is no longer a lack of energy. Even when I have to get up early and I feel tired, it doesn’t compare to the kind of fatigue I had before. I now have the ability to go out and not worry about anything. I haven’t had any problems with my ostomy at all.

I really don’t know what else to say. Life is much better with an ostomy than with Crohn’s. I don’t know how much longer I possibly could have lasted with that disease.

If anyone has any questions I’d be happy to address them.

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. ๐Ÿ˜›

The Burning…

August 30, 2010

When I went back to the doctor a few days ago, I had to get my wounds cauterized again. The process is basically supposed to remove excess skin and bumps so that the wound can actually heal properly. The little skin bridge that was connecting my two wounds the last time had actually broken, but the excess skin still needed to be removed.

Fortunately for me, my surgeon used a local anesthetic to numb the area first. It burned when she stuck the needle in the wound and injected the anesthetic, but shortly after that I felt nothing. She then used the battery operated cautery to burn everything off around my wound.

It really wasn’t that bad. Even after the anesthetic wore off, I didn’t really feel anything.

So I went back again today for my ostomy nurse to check on my progress. The two wounds on the top and side of my stoma are healing nicely and don’t have far to go until they are completely gone. The wound on the underside still looks a little nasty, but it does look a lot better than four days ago. Hopefully, we can get this all completely healed up soon, because that’s the only thing that’s still being bothersome.

In the meantime, I am using an Aquacel Ag dressing under my ostomy wafer around my stoma. It contains silver, and it is supposed to act as an antimicrobial dressing. It makes it less prone to infection.

Otherwise, life has been pretty awesome in comparison to the shell of a life I had before my ostomy. I’ve been going out with work friends and just enjoying being healthy for once. I started back to work last Friday (yay), and I start back to school on Wednesday. Hopefully, it’s not too stressful this time around.

So I had another follow-up today. This was a month from the last appointment. I saw my ostomy nurse to see how I like the products I’ve decided on (I like them a lot) and how the separation/wounds around my stoma are healing (not really at all).

Okay. Basically, my stoma is an end ileostomy if you want to google or look under my pictures to see what it looks like. It is mostly round; it tends to move around and change shape as it pleases. To create the stoma, the surgeon folded back my intestine like a sock and sutured it to my abdominal wall. There was a small space all the way around the stoma between the intestine and the abdominal wall that needed to heal up after surgery. I used to be able to see the sutures poking out, but they are now dissolved and I can’t really see any anymore. Some parts around the stoma seem to be healed very well. Little patches on the top and the side have small skin irritation and still have wounds right where the separation is. The area that is irritated the most is right at the bottom of the stoma where it is difficult for me to see. I’ve been packing those areas with stoma powder during each pouch change for the past four weeks, but that area hasn’t gotten any smaller. In fact, it seems to have gotten a little worse. The separation area right near the stoma is pretty irritated, but now there is also a smaller hole right below that. We found that this hole is actually connected to the other wound via a tiny skin tunnel.

Also, my belly button wound from my keyhole incision is no longer a gaping hole. It kind of evolved into a strange bump. I guess it was still a hole, but now some soft, moist tissue was now protruding out of it. It still leaked a little bit of clear liquid every now and again. Gross.

Now that you partially understand what my wounds are like, I will tell you WHAT MY NURSE DID TO ME. She got some long sticks with silver nitrate on the end.* They kind of look like long Q-tips, except with burny chemicals on the end instead of fuzzy softness. SO… she took one of these sticks, and shoved it into the hole in my belly button! I thought the hole had disappeared, but apparently not! She tried to knock off the piece of tissue that was sticking out, but that ended up being a futile and painful attempt. However, I did end up knocking it off when I got home. I guess the silver nitrate had a chance to work its magic by then. It was still painful. Now there is a tiny hole there, and I’m keeping gauze in my belly button to keep the area dry.

Next on her rampage of destruction, she rubbed the silver nitrate stick all in the wounds around my stoma, and through the hole into the other wound! This would have hurt with just a regular Q-tip, but now I get an added burning sensation! Now everything around my belly button and my wounds is grey and…sooty? I’m a trooper though. While she was doing it, I was just staying silent and cringing to myself. She asked me, “Does it burn? Most people react more than this.” I replied, “What? Do they scream in bloody horror?” I’m just hoping that the pain was not all for naught and everything heals up perfectly soon.

I promise really do love my ostomy nurse, but ouch. Ha.

Note, however, that my wounds have nothing to do with an effluent from the stoma or defects in the ostomy appliance that I’m using. And there is no fault with my surgeon either (most of my incisions are healing quite nicely, and they were all absolutely BEAUTIFUL when I came out of surgery). My body is just being stubborn and deciding to heal slowly. Do you know what I blame this on primarily? PREDNISONE. The medication that keeps on giving.**

The wounds around my stoma aren’t serious by any means though. They are pretty small. They are just kind of annoying. They don’t usually hurt ย in everyday circumstances. It is kind of painful when people stick things in them though. ๐Ÿ˜ฆ Anyway, I am going back in four days to see what my surgeon has to think of this. My nurse said that they will probably do something similar to THE HORRIBLE BURNING “but it will be worse.” Haha. I’m glad I’m a good sport. They might numb the area first, but they might not. I’ll let you know.

*At the animal hospital where I work, we use silver nitrate sticks to cauterize dog toenails if we accidentally cut them too short during a toenail trim. We usually only resort to this if we are out of “Kwik-Stop” powder, because the silver nitrate burns, and the doggies are usually very unhappy about it.

**Yes, yes, prednisone, I do realize you pretty much kept me from literally dying for most of my life. Still, can you knock off the nasty side effects?