Thursday, April 28, 2011

Well That Didn't Work So Well....

Last pouch change I tried the thing with the barrier ring and only put half of one on around the bottom half of my stoma. It was an experiment to try to deal with some issues from the position of the opening of my stoma. Well, I think it's safe to say that didn't work out so well and I won't be doing things that way again. I had plans to shower and change the pouch this morning. Well, last night I popped into the bathroom for one last empty before bed, and found a small amount of brown "stuff" seeping out in one tiny spot around the edge of the flange tape. Ack, my first ever leak! It was around the top where I'd skipped the barrier ring, too. Sigh! Bedtime was going to have to wait as this could not be left until morning. I wasn't really in the mood to do the whole showering thing, so I did the change standing in front of the mirror at my bathroom sink. It was a little tricky as the stoma was functioning some, but not too bad. The skin around the top of my stoma was really red and irritated, so that leakage had been accumulating for a little while. I treated with stoma powder and went back to a full barrier ring for this go round. I will change again in three days and hopefully the barrier ring holds up that long. I have a follow up appointment at Cleveland Clinic on the 9th of May which includes a meeting with the stoma nurses. Unless my skin starts to look worse, I think I can muddle through until then. It may end up that the changed position of the stoma means we need to switch appliances. I'll just have to see what they say. I am really glad this happened after my incision wound was well closed and healed because some of the leak was in that area and I would have been freaking out about potentially contaminating the wound and getting an infection. Also, I'm good enough at changing now that it wasn't a huge ordeal to have to change out right before bed. I think I was done in a little over fifteen minutes. I've come a long way!

Wednesday, April 20, 2011

Pity Party Hangover

I haven't had much to say because I've been too busy feeling sorry for myself. I'm not even sure why, really. I think maybe the "Yay! I'm not sick anymore!" euphoria was wearing off and I was left with the reality of what I still have to deal with before I get to the finish line of this thing. There is no doubt that I will hang in there and see this thing through, but sometimes the road is windy or bumpy and we just need to have a seat and pout for a few minutes.

I'm struggling a good bit in the weight loss arena. Several things have come together in a perfect storm of making it more difficult than it was before surgery. I do Weight Watchers so I follow their points system for how much food I can eat in a given day and still lose weight. You get extra points for being a nursing mom. I have since weaned the baby, so those are gone. You also earn points for exercise and running earns a ton in a relatively short time span. Running is not close to being on the table right now, so those points are gone. So here I am with a much tighter food "budget", so to speak, and it's not something I'm used to dealing with. I have to really scrutinize every single thing I eat.

Add emotional eating to the equation and you can see how this can get ugly really fast. I am not eating large quantities of food, mostly thanks to the ileostomy. My appetite is pretty good again, but I have to chew my food so thoroughly that it takes forever to eat much of anything. After awhile I just get physically weary of the act of eating. This is not all bad, as it also gives my body a chance to recognize it is full and send the appropriate signals to my brain, etc. So my problem right now is mostly a matter of selecting better food when I do sit down to eat. I am hampered a little bit by the soft foods diet. In the past my approach to WW was lots of fruits and veggies, now my choices in this area are really limited. It makes things tough. I also find myself justifying pure comfort food under the guise of deserving it because I'm recovering and junk excuses like that.

The thing is, I have to get my act together in this area or there won't be any Step 2 j-pouch surgery this fall. My surgeon has already told me this and the reasons he is basing on are sound. So, it's time to take it all seriously and get more motivated than I've ever been. I got my food journaling back on track today and did well with staying in my points target. I also got on the treadmill for some walking. I managed to walk for an hour! I was surprised to learn this earned me 5 points which is great! I'm going to do it again tomorrow. I covered 5k (3.1 miles) which made me feel good. We will walk in a Race for the Cure 5k in May, so I'm thrilled that I can already cover that distance without difficulty. I need to be more consistent with the walking. True, it's not running, but it's something. It helps and it will make me that much more ready when I do get cleared to run. I need to keep these things in perspective. Right now I have 39 more pounds to get to my goal weight with WW. I can, and I will, do this.

I think I've also been psyching myself out about some aspects of life with the ostomy. I did learn one thing: when I order new pouches I have to get the opaque ones. I tried one that Hollister sent me as a sample and it made such a difference in allowing me to relax and not worry about what was going on in there! I was so sad about the idea of taking it off and going back to the clear pouch that I actually waited 5 days to do my change (instead of 3-4). I think that is just a little too long based on what I found when I took the pouch off. Those white pimply bumps are not a problem anymore (I think there was one new one and that was it). The skin right above my stoma was all red and irritated. As my stoma has shrunk, it kind of rotated so the opening is pointing upward. This isn't a huge problem, but the opening is kind of close to my skin now (it's not the whole stoma retracting, as there is plenty above the's just a positional thing with where the opening is). I've been using a convex wafer, which I need because my stomach is squishy. I also have been using the Adapt barrier ring. I think I need to switch to only using the barrier ring on the bottom half so the edge of the flange will be completely below the opening of the stoma. Otherwise, the output slowly compromises the barrier ring and then a little bit gets on my skin and causes that redness. Unfortunately, I didn't think of this until after I placed this new pouch, so I will wait and try it out when I change here in 3 days. I hope it helps. If not, I guess I'll be making a call to the ostomy nurse for some tips and ideas.

The other thing weighing on my mind a bit is knowing they will be slicing me open again. I'm four weeks out from surgery now and the incision is healing pretty well. It's still tender sometimes depending on what I do or how active I am. I know I still have a couple of more weeks before I can expect to actually feel somewhat good in that arena. It's been difficult only because of the time involved. Nothing has been horribly painful or unbearable, but it's just the constantness of it and how long it's taking to get over the whole thing. And I have to do it all over again at least once. (I get the impression this giant incision won't be needed for Step 3, but I need to clarify that with my surgeon.) I know it will be worth it in the end, but right now the idea of starting all over with this lengthy recovery is too much to think about. So I really try not to.

Monday, April 11, 2011

Pouch Change Fail

Sigh. It had to happen at some point, right? I think it happens to all of us at some point. In the grand scheme of things, my pouch change fail really wasn't that bad. If this is the worst thing that happens to me in my life with an ileostomy, I am going to be ok.

I decided to combine my pouch change with a shower. This is a common method and I now know why. I got in the shower, went ahead and washed my hair, then used the adhesive remover wipes and took my old pouch off. Between the warm water and the wipes, it was tons easier to get the adhesive loose from my skin. I still have some of those pimply looking red marks, but the old ones were healed and these were new ones. I guess I'm not gaining ground on them, but at least I'm staying even. It was really nice to shower without the bag hanging off of my stomach! It was also nice to let the warm water run over and clean my stoma area really well. It felt great.

Out of the shower, I had to make sure my skin got nice and dry. Then I had to finish getting things ready to put the new pouch on. I still have to measure my stoma because it's changing size. They start out swollen immediately after surgery and then gradually shrink down for 4-6 weeks. I originally had an 1 1/2" stoma, now it's just between 1 1/4 and 1 1/8". I've been drawing the 1 1/4" line and then cutting just inside of it and that seems to work well. Measuring and cutting done, new pouch snapped onto the flange, barrier ring paste in place, new steri-strips applied, and then I went to put the new pouch on. I was instantly confused. Apparently the last one Molly put on me, and the one I did myself last time, was from the sample kit Hollister sent me. The ones I actually have on hand are different in that they don't have the same kind/amount of tape around the outside edges of the wafer. Once I figured that out I got everything pretty well smoothed down how it should be, but I was worried it wasn't going to hold as well as the other kind I was used to. I decided to wear my support belt though I hadn't been wearing it lately.

Fast forward several hours, and things were looking weird in the pouch. Keep in mind, I'm still using a clear front bag, so I can see everything inside there. (Sometimes gross, sometimes's a weird thing.) At any rate, it looked like there was "stuff" all built up around the stoma. This happens sometimes, no big deal, except when I went to push it down and away so it would fall down into the bag, I realized it was actually the barrier paste ring. Argh! Part of it had come through the flange and now I had pulled it away, allowing the output to now leak behind it and onto my skin. I realized this meant I was going to have to do a pouch change and take off the one I had just applied this morning. Lovely.

I set everything up and set about taking off the now defunct pouch. With the adhesive remover wipes, it actually wasn't bad. While I was removing it, I tried to think about what I did to make the barrier ring end up inside the flange like that. I remembered that I had pressed part of the inner edge down around the hole in the flange. Apparently this is a bad idea! I'm glad I figured out what went wrong though, so hopefully this won't happen again. Putting the new pouch on went smoothly and I feel better about the new style of wafer now that I've done it a second time. I did use a little Hytape on one side because the wafer edge wasn't wanting to stick to the steri-strips. I think they had adhesive remover residue on them. At any rate, I feel good about this application and it should hold up fine until Thursday or Friday when I'm ready to change it again.

I am a little curious as to what is going on with my stoma. It started out with the opening pointing straight ahead. Now it seems that the top has rotated toward my body and the opening now points more upward. It seems fairly close to my skin. I really hope it's not retracting or something because that can cause some problems. So far, everything is still going into the bag like it should so I'm just going to keep an eye on it. It's always something, right? Like I said, if these are the worst things to happen to me with all of this, then I'm going to be just fine. I just thought I'd share this incident so if you are new to ileostomy and struggling with your pouch changes you'll know it's not just you!

Sunday, April 10, 2011

More New Stuff

It's been a busy and eventful couple of days! Ok, eventful if you are someone who has mostly been sitting around reading, taking naps, and learning the fine art of pooping in a plastic bag. So here is what I've been up to:

Thursday home health nurse Molly made her visit. I did the bag change start to finish all on my own with her watching over me. I can't believe how nervous it made me! I actually got all sweaty on my forehead because I was nervous and concentrating so hard on trying to get it all right. I did it though! The tricky part was removing the old pouch and wafer because part of it overlaps my incision. The staples are gone, but the steri-strips are still there and I actually had to pull three of them off in the process of removing the wafer. It was a little nerve wracking to be pulling this adhesive stuff off of a healing incision. I kept waiting for something god awful to happen, but it turned out ok. Molly left me some extra strips, so I can just replace the ones that get pulled off when it happens. No biggie.

The only other ostomy related issue I am having is a little bit of skin irritation. It's a two part thing, really. The first is a little bit of raw skin right next to the stoma site. This is pretty common, actually. So much so that I already had this bottle of stoma powder (I think it's pectin or something?) ready to put into action. You sprinkle a little on the raw skin, brush off the excess, and then you're ready to go with putting the new wafer on. The second bit of skin problem is these weird bumps that look like crazy white heads or pimples out around where the outer layer of adhesive is (the tape part). I had a few with the last change, and more this time. The only thing I can think of is the ET/ostomy nurses at the hospital always used the adhesive remover wipes to take the wafer off and Molly and I hadn't been doing that. I am going to try using them next time and see if it makes any difference. If not, I'll have to figure out something because those little suckers bleed if they get bumped or scratched and I don't want a bunch of raw skin. No bueno.

In the end, I did a good enough job with the change that Molly said I graduated and she didn't need to come back anymore unless I wanted more help. I declined and thanked her kindly for all of her help. She really saw me at my super wimpiest and was very sweet and kind and didn't laugh at me (at least not to my face!). As nice as she was, I'm kind of glad that part of the adventure is over. It made me feel weird having a home health nurse. Like an invalid or something. I know it was necessary for awhile, I'm just glad it isn't anymore.

On the exercise front: I am pleased to report I can now walk for 30 minutes on the treadmill. Yay! This is progress. I've also managed to bump the speed up from 2.5 mph to 3.0-3.2 mph. I am very excited about this. Last week my energy levels dictated that I had to pick either leaving the house to go anywhere/do anything or taking my walk, so I skipped it a few times when I would have like to have gotten the exercise. I am hoping this week is better. I'm working toward 5 days a week for at least 30 minutes each time. Ultimately I have my eye on that 2 miles at a brisk pace by May 31st. Barring any major setback, I know I'll be ready. I have no idea yet when I'll be able to run again. I see my surgeon for follow up in about a month, so I will be sure to ask him then. I also need to ask about push-ups because my arms are looking pretty darn sad.

Sleeping has improved a ton. I am now able to lay on either side which is a huge relief after being stuck with having to lay on my back for all that time. I'm always a side sleeper, so just having that option back helps a ton. Last night I even managed to go to bed Vicodin free! I think I'm done with them now which is great. I am grateful for pain pills, and I definitely think they have a valid place in recovery since they let you control your pain and stay more comfortable and mobile, but it's a relief to be done with them and not feel like such veggie all the time.

My other big news is that I drove today for the first time since surgery. I was only supposed to wait two weeks, and this was closer to three, but the desire and opportunity hadn't really come together before today. We went to two different grocery stores today. I actually made it through both stores without wanting to collapse into a heap. I even did most of the picking things from the shelf which I haven't been doing. Hooray for progress! When we were leaving the second store, I decided I wanted to drive us home. Since I had been off of the Vicodin for about 36 hours or so, I felt safe doing so. The drive was uneventful and it felt good to be back behind the wheel. I now feel comfortable if I need to go somewhere which is good since my husband is going back to work tomorrow.

It's still rough not being able to do much to take care of the baby. Sometimes he cries and I'll try to comfort him until my husband can come and get him and he just looks at me like, "Why won't you pick me up, Mom?" Then when his dad has him, he snubs me and won't look at me. I know he doesn't understand, but it still makes me really sad. There are lots of times though when his dad will hold him out to me and he'll hug my neck and slobber all over my cheek giving me "kisses" and we laugh and it feels great to see that he still loves me. Just a couple more weeks and things will be more normal again. My older son has taken everything really well. He is so good about coming up to me and asking if it's ok to hug or touch me and then being really gentle about it. He asks me if I feel ok or if I need to take a nap. Such a little man. I can't believe he turned four last week. I'm so proud of him and the way he is growing up.

That's all for now, I guess. Having the ostomy is less of a big deal as each day goes by. I wouldn't go back to my pre-surgery days with UC at this point. I know there is still a long road to travel with the additional surgeries and recovery from them, but it's a road I'm happy to be on. I still can't believe it when I lay down at night and I don't have that ache in my guts from my poor sick colon. I also realized that I went through two different stores today without once thinking about the bathroom or needing to leave my grocery cart and rush off to go. How liberating!

Tuesday, April 5, 2011

Ileostomy Road Map

I was thinking today about how little I knew about ostomies and all the stuff related to them before I started doing my research to gear up for surgery. I thought maybe it might be useful to lay out a little information about it here for those of you who are possibly having surgery in the future. I also thought it might be a nice thing for those of you who someone who has an ostomy or maybe you're just curious. I am more than happy to answer questions, leave any you have in the comments and I'll post some replies.

So it all begins with the stoma. In my situation, I got an ileostomy which means my colon (large intestine) was removed and a piece of my small intestine now pokes through my abdominal wall. They basically pull a little out and then fold it back on itself (like a turtleneck) and then stitch it in place. The stoma is red because it's the inside of the intestine. It can bleed a tiny bit when I clean around it, but it doesn't hurt at all because it doesn't have nerve endings. The stoma is now where any waste or gas I need to pass comes out of my body. The weird thing about a stoma is you have no control over it like you do when you have your rectum and go the old fashioned way. When stuff gets the opening, it just comes on out. This includes gas and it's way louder than when it exits through the traditional route. This can be humorous or embarrassing depending on where you are and who you are with, but there is really nothing to be done about it. My stoma is located to the right of, and just below, my belly button. Most ileostomies are in this general area, but they can be on the left sometimes.

Since the stoma is just randomly letting stuff out, I have to wear a pouch all the time to collect the output. There are a lot of different pouching systems (often called appliances) out there, but I'm just going to talk about the one I currently use. Right now I am using a two piece pouching system from Hollister. The first piece is called a flange, or wafer, and it's what sticks directly to my skin. There is a hole in the middle that my stoma pokes through. The type I wear is called convex and it is curved on one side so it presses my tummy mush down and helps the stoma stay extended into the pouch better (instead of falling down even with my skin). This helps prevent leaks which are bad news because they cause your skin to get majorly irritated and make you smell like poop. The wafer looks like this.

The second piece to my pouching system is the actual bag. Right now I have these bags that are clear on the front. I am using those because it's what they started me on in the hospital, and they also make it easier to see as the bag is being put on while I'm getting used to how to do it. The downside is, I can see everything that goes into the bag and it's kind of gross/weird to be looking at a bag of your own poop all the time. When I place my next order for supplies, I will be switching to the opaque bags which are tan colored and you can't see what is in them. This is what the pouch looks like.

There are some other items that are used to protect the skin, clean things up, etc. but the other main item of interest for applying the pouching system are these paste rings. They are actually pretty cool because they fill in the gaps around the stoma and help make sure you get a good seal. This is really important for my situation because I have a squishy tummy (no washboard abs here, sadly) and there is a dip on one side next to my stoma. Without these paste rings, I would have leaks in that area and it would be a constant struggle. I get a kick out of the fact that the paste rings look like miniature versions of the wax seal you use when setting a toilet....but, I'm just weird like that. Here is what they look like.

So the way it works is, every 3-4 days or so I take the old pouch and wafer off. It basically just peels off like a giant Band-aid or something like that. Then I use some mild soap and water on a gauze or cotton square to clean up the skin around the stoma. I also check for any skin irritation and apply a special powder to help protect and heal that area up if needed. Once that's done, I take out my stoma measuring guide to check the current size of my stoma. When you get a new stoma, it's pretty swollen so it keeps getting smaller for awhile and you have to check it each time you change. Once I know the current size, I cut out the right sized hole in the back of the wafer. I smoosh the paste ring a bit until it's softened and the right size to go around the hole in the wafer. By now, the skin around the stoma is dry, so I can place my wafer and smooth the adhesive down. Then the pouch snaps on and I put my hands over the whole thing for a few minutes to let my body heat warm up the adhesives and make sure I get a good seal. That's it, pretty easy. The trick is to have everything ready to go so you can move quickly and try to get all of this done without your stoma going off and making a mess. So far, I've had good luck with this and I hope it stays that way.

I have yet to actually do the whole thing start to finish on my own. So far I've gotten things ready (cutting the wafer, putting the paste ring on, etc.) while my nurse has done the cleaning and placing the wafer for me so I wouldn't have to mess with the staples that were in my stomach. Friday will be my first go at doing the whole thing myself, but I'm confident it will go well and I won't have any problems.

Day to day, there isn't much to having the ostomy. Right now I empty my pouch about five times a day. I just do it when I normally go to the bathroom, though I will make a special trip to do it if we are going out, right before bed, etc. I've been lucky that my output is pretty low and I can mostly sleep through the night at this point without having to get up to empty. Emptying the pouch is really easy to do. All I have to do is undo the velcro, unroll the end, pinch the sides together, and it empties out. Right now I have to empty into a container to measure how much is coming out so I can keep track and call my doctor if there are any problems. I only have to do that for one more week. Once that is over, I will just empty it right into the toilet...easy peasy. I also discovered that the belly bands I bought when I was pregnant make great ostomy belts. I just slide one on under my clothes, fold the bottom edge under a bit, and it holds the pouch flat against me and supports it all very nicely. I've been wearing this to sleep in, too and it really helps me to feel more comfortable and secure that the pouch isn't going to flop around everywhere while I'm sleeping.

Well, I think that about covers every thing. Like I said, if you have any specific questions leave them in the comments and I will try to answer them as best I can.

Goodbye, Frankenbelly!

This whole surgery recovery has gone much more smoothly than I expected. One item I've struggled with though is the stupid staples. My surgery was done the old school "open" way, meaning I have an incision that runs from a few inches below my bra line down past my belly button. It was stapled closed, as I assume is the norm for that type of incision. I guess I didn't realize there would be staples until they told me I had them. I pretty instantly made up my mind that I didn't want to see them. Ever. Just the thought of them stapling my stomach together makes me want to throw up in my mouth a little. I actually had a nightmare about it while I was in the hospital, but that could be from all the drugs I was on at the time.

I did eventually have to see the staples. A lovely ET nurse came in to change me out of the pouch they put on me in surgery and also to change the dressings. I tried really hard not to look, but she wanted me to see something about my stoma, so I had to. It looked like I had a giant zipper down the middle of my belly. I got a little woozy just looking at it and I told her as much, so she tried to keep it covered while we did the rest of what needed to be done. I told the next couple of ET nurses that came in that I really did not like seeing the staples, so they tried to keep them covered up for me while they were working with my stoma. They were very compassionate about the whole thing. I think they were just relieved that I didn't have any issues seeing or working with the stoma. I'm sure they see that a lot.

Enter home health nurse Molly. She is fairly young and mostly chipper. I told her right off the bat about my staple phobia and she also catered to my wimpy request to try and keep them so I wouldn't see them. We went through two pouch changes successfully and she was very good to me and kept things covered. She also didn't laugh when I covered my eyes with a pillow so she could change the dressings. (Note: I did actually do one dressing change myself when I decided I *needed* a shower because I was too disgusting to keep doing the sponge bath thing. It was not easy or pretty, but I did it)

Well, today was a big day for Molly and I as it was staple removal day. I asked her to call me a half hour before she came over so I could take a Vicodin. She remembered and called me this morning to tell me she was on her way. Molly kept telling me during her last visit that taking the staples out wasn't going to hurt, but I couldn't believe her as much as I wanted to. We got things started by taking off my old pouch and wafer and cleaning up the area around my stoma. Then I went back to my old pillow over the eyes trick and Molly went to work on removing the staples. I could feel a slight bit of pressure and then she said, "The first one is done." I couldn't believe it! It didn't hurt at all. So much time invested in worrying and being nervous and I barely felt a thing. She kept working and I kept my face under the pillow. There were two around my belly button that felt a little pinchy, but never anything I would call painful. Then, we were finished. Molly is a rock star and I told her that while she was putting the steri-strips on my incision. They will be on there until they fall off, probably another week or so. We finished things up by getting the new pouch and wafer ready and putting it on. I felt really relieved to have that all over with.

The plan is to have Molly come back on Friday. I will set things up in the bathroom and make a run at changing the pouch all by myself for the first time. I know all the steps and how to get things ready, but this will be the first time that I do it on my own. Assuming I do a good job, I will graduate from home health care and then I'm on my own unless I have problems that warrant a call to the ET nurses up in Cleveland. It's kind of exciting to be moving on to the next chapter in my recovery. I feel like I'm adapting well to life with the ileostomy and I'm definitely grateful to be feeling healthier than I have in years. I still get tired pretty easily, but I know that's just part of recovering from major surgery and it will get better as the days go by.

Speaking of recovery: I am now able to walk one mile on the treadmill without stopping. I feel really good about this. I need to get a regular exercise routine back in place, especially since I went back to Weight Watchers tonight. I officially lost 13 pounds while I was away from meetings for surgery and recovery. I feel good about that number. It was originally more like 20, but I made an effort to put a little back on because I was feeling pretty weak and run down. I am 39 pounds away from my desired goal weight right now. I want to take that off by October and I'm confident that I can do it. It will definitely be easier when I can start running again, but I have to be patient. My short term goal is to walk one mile every day. A little longer term is to be ready to walk two miles at a decent pace in time to re-join my training group on May 21st. I know I can do it!

Saturday, April 2, 2011

Some Firsts

Well, the last couple of days have included some good firsts for me and my ileostomy:

*We ventured out to the grocery store. It was a short trip and my husband handled all of the cart pushing, grocery hauling, and baby wrangling. I mostly just had to point to stuff I wanted and try to keep up with his fast walking. We weren't there long, but I needed a nap when we got home. Interesting tidbit: I felt really paranoid about people running into me. I think it was more about the incision than worrying about someone bumping the ostomy or something. I am really skittish about falling or getting bumped and injuring the incision for some reason. I guess I just feel vulnerable with my Franken-zipper belly right now.

*I also popped into the library. Right now I'm wearing mostly workout type clothes so I don't have restricting stuff around my waist (again, incision related). I was really happy though to not feel self-conscious. I didn't once find myself wondering if anyone could tell I was wearing the pouch or anything like that. Happy!

*I put in a 20 minute slow and easy walk on our treadmill. This is big news because it means a return to a bit of exercise. I had to go really slow, but I felt great. I hope to do more today.

*I *finally* took a shower. It was heavenly. I've been doing all sponge bath type stuff since surgery, and it just felt awesome to get in there and let that hot water run over me. Despite my fears, my pouch didn't fall off or anything crazy like that. I did learn that you have to take a blow dryer and dry the fabric on the back or it will get your underwear and pants all soggy! :-)

I think that's all. It's been a busy couple of days, but I'm still finding plenty of time for resting and napping and all that good stuff that helps one recover. My weight has stabilized, so I feel like I'm able to get enough food now. I am actually planning to return to Weight Watchers on Tuesday and start my tracking back up. I think it will be nice to get that normalcy and routine back in place. Life is slowly coming back together.