Types of ostomies...

For several years now, I have wanted to write about the various types of ostomies. There seems to be a lot of confusion and misconceptions out there regarding ostomies. Generally speaking, there are three types of ostomies.

Colostomy: A colostomy is where the colon is surgically diverted through the wall of the abdomen to create a stoma.

Ileostomy: An ileostomy is where the ileum, which is the lowest part of the small intestines, is surgically diverted through the wall of the abdomen to create a stoma.

Urostomy: A urostomy is where a stoma is created to help divert the drainage of the bladder and urethra.

There are different "subcategories" within the realm of ostomies such as J-pouches but today we are just talking about generalized ostomies. The reasons as to why a patient may need an ostomy vary. A patient may have a blockage or obstruction, cancer, GI conditions such as Crohn's, Diverticulitis and Irritable Bowel Disease (IBD), infection, an injury that resulted in the need for an ostomy or motility issues. The reasons are vast. Some ostomies are temporary while others are permanent. It just depends on the patient and the medical situation.

ileostomy decisions...

It is hard to believe that is has been a little over a year since I had my ileostomy surgery. Looking back that was such a hard decision to make and go through. I remember going to meet with my surgeon and hearing that an ileostomy was basically my last option surgically next to a transplant which wasn't possible at that time. With the frequency of the clean outs combined with the large amount of medications needed, I was basically headed towards the end of a cliff. Something would eventually have to be done; I couldn't continue to live how I was currently living at the time. The downfall to having the ileostomy surgery was my gastroparesis and decreased motility in my intestines due to the paralysis was that there would be no knowing as to if the surgery would work. Sitting in that surgical consultation, the room was honestly spinning. I knew years before that my GP would affect me in greater ways but I never expected to be hearing news such as this. I had just gone in for another colectomy. I just wanted to have the remaining eight inches of my colon removed and have my small intestines connected to my rectum or even have a J-Pouch created. I was not ready for this. Ostomies were unattractive, foreign and just scary to me.

Over the next couple of weeks, I struggled with finding peace about having the surgery. How would I personally deal with living with an ostomy? How would my life change? How would I look? How would other people perceive me? It was one of the hardest times in my life. When making the decision to have my colectomy, I immediately had a peace about the surgery but I didn't have a peace about this. Finally, finally, I had a peace about this surgery. I realized that it wouldn't change who I am. I would still be the same person; I would just have an ostomy bag attached to my side. Since then, I have actually grown a bit as a person. Going through that whole experience made me stronger and less worrisome about others opinions. 

Along the way, I have encountered some negative comments about my ostomy and how I dress which I suppose is just par for the course. Just like in life, with any disease, you have to grow "thicker skin" which isn't always easy and can take quite some time. You just have to look the other way and just things go. When I was being fitted for my ostomy, they explained that I would live in athletic wear because it would be the only thing that was comfortable. They weren't kidding. Jeans, khakis, dress pants are all painful for me now. Because I am a short person and have much of a waist, so there isn't a lot of room so when I sit down. My clothing bunches up under my ostomy and causes pain and can eventually result in havoc in the end. It simply isn't worth it most times. Athletic pants fit right because I can adjust them and they are soft. I live in loose t-shirts or sweatshirts because they are long enough to cover my ostomy (I don't tuck my ostomy into my pants) and they allow room for bloating which is a multiple times a day occurrence with my GP. Originally my plan was to tuck my ostomy into my pants or wear a wrap. I have invested hundreds of dollars into custom wraps tailored to fit me but they are so uncomfortable for me personally and I find them to be bulky. They eventually end up irritating my skin from pushing my output up under the ostomy wafer so I just leave my ostomy bag out under a camisole. The downfall is that it is more visible but it saves my skin and is ten times easier not to mention more comfortable. I have received comments that I need to dress better and more appropriate. Ostomies are offensive. It isn't true. A lot of comments come from just being uneducated about a topic and simply not knowing. When I first saw my first ostomy, it scared me. Everyone copes and deals with things differently in their own ways. 

Today I am completely happy and content with my ileostomy. My original plan was to leave the ostomy in place for a year to hopefully get a break from the clean outs and have it reversed in the spring of 2014. However the surgery wasn't successful and I only had a month break from cleaning out. Do I still want to reverse my ostomy? NO! It drives me crazy some days and gets in my way but it truly saved my life by buying me sometime. It actually has some perks.

As for my GP, the past month of so, I have just been all over the place. I'm being scheduled for another endoscopy with Botox. My weight has continued to stay at eighty-five pounds. I have been eating as much as I can but I just can't seem to gain any. My neurologist mentioned that since the last time she saw me right after our wedding, I was only down several pounds so she wouldn't fuss at me (my neurologist is such a cool doctor). I was sitting there thinking oh my gosh, my ostomy bag was almost full when they weighed me. She would have got me about my weight if it would have been empty. I truly got away by the skin of my teeth. 

I finally called my surgeon last week after having some bleeding after a colon spasm. During the past couple of months, the spasms have become more frequent and more painful not to nauseating. After talking with my surgeon, he explained that I basically had colitis in my remaining colon. My colon was inflammation and irritation. How did this happen when I don't even use the organ?! He called in a prescription for several enemas (Oh what fun this will be considering I thought this door was closed in my life, no more enemas. I suppose I was wrong.) that would help relieve the inflammation and irritation. The issue lies in my pelvic floor muscles. They weren't worth much when I used them due to my pelvic floor dysfunction. I have hardly used them in over a year and we all know the story about how muscles become when you don't use them. This should be an experience to say the least; I'm not looking forward to it. If the enemas don't do "their job", we're going to go down that road and remove the rest of my colon. My surgeon explained that normally it was a harder surgery but since I have already had a colectomy and ileostomy, he could do it robotically so it wouldn't be as hard. I've been giving it some thought and I am going to tough it out for as long as I can before undergoing another surgery. 

 Image from: http://pajamaproductivity.com/wp-content/uploads/2011/06/CalendarPages-XS.jpg

a GI appointment...

I went to see my GI the other week. The appointment was very beneficial and productive. During the appointment, we discussed the success of the Botox injections that I received back in December to help  reduce my stomach spasms. Last fall I started experiencing these painful yet nauseating colon spasms. When this first started happening, I could not figure out what was going on. Is it even possible to have pain in the remaining eight inches of colon that I have when it isn't even hooked up to my digestive tract. Very, very strange. After speaking with my surgeon and GI doctor several times since then, the colon spasms haven't stopped. It is just something patients sometimes experience after having the type of colon surgery that I had. However they are so random. I never know when they are going to happen or where. I was once in the grocery store and it was so bad I honestly thought that I was going to have to just leave my cart in the middle of the store and walk out. At this last appointment, my GI gave me something to help with the spasms. Hopefully the is new medication will help during those unpleasant times.

Another thing we talked about during my appointment was my weight. Fully clothed, I weighed in at 85lbs. My GI expressed his concerns and dislike about my weight which I fully understand. This brought us to my clean out routine and "future plans". He explained that he did not want to remove any of my small intestines. We discussed my current routine and my small intestines decline in motility just like with my colon. As for now, I am to continue clean out as is doing it three times a week. As time progresses, we will up the medications as we see fit. If my Linzess stops being as effective as it is now, we will substitute it for another medication in hopes to buy me some time. The whole overall goal for me is to not max myself out medication. He did explain to me that when the time comes, we can do a feeding tube which would be placed into my small intestines for additional nutrition and possible weight stability. I am sure my facial expression was not the best when I heard that but I'm a determined and stubborn person. I am not interested in having a feeding tube. I have enough going on below my rib cage. I do however know from experience, that once you get to a certain point and you're so sick, you'll do just about anything to feel better.

This is taken almost a week after my colectomy. It was bad.

These were taken the morning and afternoon of my ileostomy surgery. I made Jacob take these pictures so I could look back and visually see how bad it was. Over time, you sometimes lose perspective and forget how an experience actually was. The morning of my ileostomy surgery, I couldn't move without vomiting. I couldn't move my hands and feet. I have never been so sick in my life than what is depicted in these two pictures. During those hospital stays and just being so sick, my fears and perspectives changed. You could have pretty much done whatever to me medically because I was so sick. Situations like these are what my GI and I are trying to avoid. If that time does come, I want to already have somewhat of a plan in place so I am not sick as a dog and having to make a life altering decision.

Since Jacob and I have been married, I have done really well during my clean outs at night. I have only blacked out, no passing out. Our bathroom is separate from our bedroom so I have always wondered if he would hear me if I was to pass out in the bathroom. I have to sleep with the fan going so I don't get hot and I am honestly not waking him up every time I get up during the night. To me, it's ridiculous. Well Wednesday night during my clean out, I got up to go to the bathroom and I had to sit in the floor to finish cleaning my bag. Looking back now because hind sight is always twenty-twenty, I should have known I was in trouble. I got up to wash my hands and I just got that feeling. I thought to myself that I'd better get back to the bedroom. I made it about two steps into our bedroom and I passed out cold. I think my head hit the door before hitting the hardwood floors because it was throbbing. My left side took the blunt of it. It took me a few minutes to get my bearings back. Needless to say, Jacob had no problem hearing me and I'm pretty sore from all of it.

a really important ostomy lesson...

I learned a really important lesson Tuesday, fingers do not belong inside your stoma. The whole thing started on Sunday. I had had massive clean out on Friday that left me extremely weak so I actually skipped my Linzess Saturday morning. I didn't want to further dehydrate myself and just add to my weakness so I just skipped it. When I woke up Sunday morning, I realized that it probably wasn't a good idea to have missed a day because today I'd be making up for it in the long run. Sunday mornings are pretty rough for me. This Sunday, I knew church wasn't going to be a possibility. I took my Linzess and it didn't take long before things started moving. I ended up having to change my ostomy bag and wafer three times on Sunday. It was horrible. My skin was so irritate. While I was trying to change it, I couldn't get the area around my stoma clean due to my clean out that was taking place. With a stoma, you have no control of your output. I eventually got tired of dealing with it and just put my finger in my stoma like my surgeon had done before. I was hoping to temporarily stop my output long enough to clean the area around my stoma so I could prep the skin to apply my wafer and bag. Believe it or not, it actually worked. (I'm not a doctor and I'm not recommending this.)

Late Tuesday afternoon, I was mid clean out. I had just went to empty my ostomy bag and I looked down and my bag was empty but I still had a stream of output flowing into the toilet. I was quite furious. I had tip toed around since Sunday afternoon babying my ostomy in an attempt to not irritate my skin further and goodness knows not break the seal of that wafer. I got all of my ostomy supplies out that I needed in order to change my bag and wafer and called Jacob. I would definitely need his help. My plan was to do the same thing as Sunday, use my finger to temporarily stop my output and clean the area around my stoma as quickly as possible. Jacob ask me not to do that but didn't listen. On my second attempt at trying to get the area clean, when I went to pull my finger out of my stoma, my stoma never came out. I had accidentally pushed my stoma in. To better explain this, it was kind of like when you have a shirt sleeve inside out. It felt so awkward. I was concern of what type of damage I might had caused and would the output back up internally causing a blockage. Of course by then it was after hours, so I called my GI doctor and spoke with the on call doctor who transferred me to general surgery. Luckily I did no harm to myself. In time my stoma would push itself back out. I just needed to watch for any color change.

I learned a really important lesson. If possible, I need to attempt to keep my fingers out of my stoma. For those of you who are wondering, yes, I am constantly washing my hands and practicing good, clean sterile techniques.