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The plus side of not having a colon

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I am still 25 days away from my surgery, but I am already set to go for it. I mentioned the other day that I went to see my surgeon to have had my pre-op appointment. I had the appointment on Tuesday since it was the last weekday I will have off from work before the surgery. It was interesting being back at UNC Hospital on the one-year anniversary of my original surgery. I was already being sentimental that day and it just brought back even more memories.

The point of this appointment is just to go over the paperwork necessary for the surgery,unc hospital health care chapel hill surgery memorial stephanie hughes stolen colon crohn's ostomy blog to make sure that the patient has a full understanding of the procedure and to go over what the patient needs to do in the days leading up to the surgery and on the day you actually go in for it. I pretty much knew everything already, since I spoke to my surgeon about in back in March when I went in for the pain issues I was having around my stoma. I was already thinking about it at that point, but it was once my eye issue sprung up that I made to decision to go ahead and book the surgery.

I’ve been well aware of what this surgery consists of for a while. I knew right after my first surgery that it was something I was going to have to have done at some point; I also have a friend who went through the same surgery just about 6 months ago, so thankfully I had someone to talk to about what to expect. It was also nice to go through all of those details with the surgeon, as well.

The recovery is about the same as my last: approximately 5-7 days in the hospital, but probably only 4 weeks total to be back to normal. I did find out one new thing about the recovery this week. The reason they keep you for that long in the hospital is to make sure that my ostomy will start outputting again, even though they won’t actually be doing anything with that part of my body. I asked why and they told me it’s just from the trauma of surgery and also from the anesthesia that it’ll shut down for a bit, which sadly means that I’ll probably be stuck drinking chicken broth again (and honestly, “broth” is much too good of a word for it.)

I’m having this surgery 2 days after my half-marathon and just one day after making the trip home from the race. I’m so thankful to not have any real prep that I have to do for this surgery. The plus side of not having a colon is no more bowel cleansing! I should actually get a call that Friday, once I’m already in Virginia, to find out what time on Monday my surgery will be. I’m hoping for early so I can have it done with and start moving on.

My ostomy and me: 1 year

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This is an important day for me. It is a day that I will always remember as one that changed my life. On this very day, just one year ago, I was waking up in a hospital bed after a 4 hour surgery with a new addition (…and subtraction) on my body.

In honor of such a big day in my life, I took the opportunity to take today off from work, so I’ve enjoyed a fairly laid back day. I did start today back at UNC Hospital for my last appointment before my surgery last month just to go over all of the details and sign all of the paperwork (but more on that later.) I then treated myself to a little shopping and then a little errand running. Now I’m back home watching TV and I even got in a quick nap!

It’s been nice to have the day to myself and to have some time to think. I’ve been going through some of my posts from last year, just before and after my surgery, and it’s amazing to see the change in me. I was so scared at that time. I didn’t know what to expect, I wasn’t sure how to move forward with my life. But I see now how it has all come together.

stephanie hughes ileostomy ostomy anniversary one year crohn's disease blog stolen colonI wouldn’t give up this year for anything. I have learned so much about myself and finally remember what it’s like to really feel good. I am definitely not saying that it’s been easy, but I can confidently say that this was the right decision and I would make it over and over again. Being a part of this online ostomy/Crohn’s community has been a blessing, as well, and I look forward to continuing to build relationships with many others out there.

Just one year ago, the idea of having this second surgery would have been a difficult idea to accept. Now that I’ve had a year to realize this was the best decision for me and it doesn’t make any difference if it’s permanent, it doesn’t seem so scary.

Preparing for surgery #2

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I feel very blessed that I have had such a positive experience with having my colon removed and living with an ostomy. Especially compared to many of the others out there that I know with an ostomy, I really haven’t had any major issues arise. However, there have been a few things that have caused me to worry a little.

Let me start by explaining a little about my previous surgery. When I had my colon removed last May, the doctor left about six inches of my colon inside me. This part is tied off and is usually left to allow for the possibility of reconnection. Basically in some cases (usually if the patient has ulcerative colitis and not Crohn’s disease), the surgeon can reconnect the small intestine to what’s left of the colon and your digestion should function in a more normal way, eliminating the need for an ostomy. I talked about this with my surgeon at our follow-up appointment a few weeks after my surgery and wrote about it in one of my blog posts, Doing A-OK.

In my case, those few inches of my colon are still pretty diseased. I can tell: I still have that feeling of needing to go to the bathroom and I fairly often still have blood in that area. Plus, leaving that portion of your colon in for many years can increase the risk of cancer in the future. I have come to terms with the idea of having it removed and making my ileostomy officially permanent, but had planned to wait until after having kids to have another surgery.

But like I said, a few issues have come up recently. There’s the joint/muscle pain that I’ve been dealing with, that could be due, at least in part, to there still being inflammation in my body. Plus, I’ve had some irritation problems in that area since pretty much just after my surgery. The final straw for me was the inflammation in my eye. Having that come up made me worry about having active inflammation in my body and what else it could possibly cause.

The week that issue came up, I called my surgeon’s office and said, “It’s time to book the surgery and the sooner the better.” I also said that I had committed to this half-marathon and I wanted to wait until after that. So we booked for as soon after that as possible: 2 days after, in fact. Just one month from today, on June 3rd, I will go back in for my second surgery to have the rest of my colon completely removed.

The recovery should be fairly similar to my previous surgery. I should be in the hospital for 5-7 days and have another 2-3 weeks of recovery time after that. Having any surgery makes me a little nervous, but I’m just ready to have it done with. Honestly, I’m not even sure that this is the root issue, but if it is, then I just want it gone, but if it’s not, then at least I will know and can move forward from there.

And now my second trip back to the surgeon

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I have had an interesting week. Normally, my ostomy doesn’t give me much fuss. I usually change it about once a week. I rarely have leaks or any other incident. A lot of the time, I basically forget it’s even there. That was not the case this week.

I told you yesterday that I went to visit my surgeon due to some persistent pain in my stoma. He checked it over and told me just to keep an eye on, but he didn’t think there were any major issues I should worry about. So last night, I go about my day and that evening, I took one of those heat packs that you warm up in the microwave and you usually use for headaches, and put it across my stomach. I was hoping to relax the muscles and allow anything that may have been stuck to move along.

When I woke up this morning, I was still having some pain and I could just tell that my stoma felt a little weird. I looked at it through my bag and it seems to be coated with something, so I used some water to help clean it off, but it didn’t make any difference. I thought maybe something had hardened on it, so I decided to take off the bag and clean it with some wet wipes.

Well… when I did that, I saw that it was not coated with anything. It had actually turned gray. It was also swollen over the hole I had cut in my bag, so I could only assume that it had enlarged and the blood supply had been cut off, therefore, killing that part of my intestine. (Don’t worry, I’m not going to show you any gory pictures.) I’m thinking the only option is going to be to removed the end of my intestine and form a new stoma. So here comes panic time. I call Jarrod and tell him that I think my stoma is dead and I need to go to the emergency room. He was already on his way out of town, but my parents came to meet me and take me over to UNC. I did call my surgeon on the way over to say that I was going to the ER, but they told me to come up to the clinic and we could go from there.

I got over there to see him and told him what was going on. I took off my bag to let him take a look at it and gave me one of those, “Hmm… that’s unusual.” He examined it for a little bit and it started bleeding a lot. That made me nervous at first, but he reminded me that it’s actually a good thing. He said the intestine dies when there is no blood flowing to it and obviously I still had a good blood supply. He said he had never seen anything quite like this before.

So here’s what we believe may have happened: when he checked my stoma yesterday for issues, it caused a trauma and some bruising. We all know the remedy for swelling and bruising is cold, but I put heat on it, which I think must’ve exacerbated the problem. We’re still not exactly sure why it developed the sort of gray coloring on top. (Maybe that had something to do with the bruising, as well…?) But he thinks I’m going to be OK and this should sort itself out. Trust me, I am paying extra close attention to it and making note of any changes. Also making sure to chew my food extra-well right now.

This was a very bizarre week for me. I honestly spent several hours today thinking I was going to have to have another surgery and praying that wouldn’t be the case. I guess it worked.

My first trip back to the surgeon

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I made a bit of a last-minute visit to my surgeon today. But let me tell you the whole story…

Last Thursday, I was not good with my eating. I’ve learned that I can eat pretty much anything I want, but I need to do it in moderation and be sure to chew those difficult foods extra carefully. Well last week, I ate mushroom pizza for lunch and had a side of creamed corn for dinner. First of all, I had way too much corn. I can eat it just fine in small quantities, but I did go a little overboard. (I didn’t have enough for 2 servings, but it was too much for 1 and I didn’t want to throw it out. Lesson learned: throw it out!)

And I actually do OK with mushrooms, but I do need to be careful to chew them thoroughly. I hadn’t intended to eat the pizza that day, but I got busy at work and didn’t have time to run home for lunch and someone else at work had extra pizza. So I ate it and ate it somewhat fast since I was just eating while I was working. Also, the mushrooms you find on pizza are a little different from the ones you cook up fresh. They just have a tougher consistency and I now realize they are more difficult to digest.

That evening, I could tell my stomach was not feeling well. I had some minor pain that evening and went to bed early in the hopes of it passing in the night. But the next day, I woke up still in pain. It was bothering me on-and-off throughout the day, but I still figured it was left over from the day before. When it was still hurting on Saturday, I started getting a little concerned. I had tried massaging my stomach, moving in different position in hopes of moving along whatever what stuck. I needed to change my ostomy bag that day, so I paid special attention to the area. It was the stoma that actually hurt and the area directly surrounding it. I didn’t have any irritation on the skin and couldn’t see anything protruding out (which could indicate a hernia.) However, I did notice that my stoma had swelled a few millimeters.

By Sunday, I got very concerned. It was still causing sharp pain, to the point that it was bothering me just walking. I had my first group run for Team Challenge and I honestly did not think I’d be able to make it at all (more about that soon.) I survived, but the pain was not going away. I believe I told someone it felt like I was trying to pass a razor blade. So first thing Monday, I called my surgeon’s office and they told me to come in on Tuesday.

This morning, I went to see him. This was actually the first time I’ve had to see my surgeon since the initial surgery and follow-up. I told him this whole, long story and he checked out the area. He GI surgical hospital exam room stoma pain stephanie hughes stolen colon ostomy blogagreed that he didn’t see any signs of hernia and felt around for signs of recurring Crohn’s. This consisted of actually inserting a finger into the stoma to check for issues. Holy schnitzel! I thought I was going to cry. It hurt sooo bad!

So the good news first: he said he didn’t see any major issues. He checked for all of the normal “red flags” and nothing came up. He advised me to give it a few more days and see if it would pass.

The bad news: it still hurts. It’s not constant pain, but it’s often enough to be a bother and to make me not want to do much of anything today (plus, the cold, rainy weather is not helping). Thankfully, I do have a three-day weekend coming up, but I first have to make it through the next two days.

It did alleviate my concerns to have my surgeon tell me that he wasn’t to worried about it. And he said that in a non-condescending way. He said it was good that I came in and he wasn’t trying to dismiss my concerns, but he doesn’t think it’s a bigger problem. So I’m just waiting now. Trying to eat easily digestible food and taking in lots of fluids.

Has anyone else had something similar? The pain is mostly on the stoma itself, but a little surrounding it, too. Did it go away on its own? Was there anything in particular you did to help?