Preparing for the takedown really isn't that difficult. If anything, it will put you back somewhat to normal so you don't have to modify your lifestyle before hand as you did for surgery 1.
Supplies to Stock Up
Buy nice toilet paper. You will be wiping a lot and it will be painful after a while. I really like Charmin Ultra Soft. It is really the only one that doesn't give me diaper rash. Also, buy stuff to deal with butt burn. It is not pleasant and you should really buy a variety of items to see what works for you. Some winners are calmoseptine (for extreme butt burn; it has a cooling effect), tucks pads (they wipe off all the stool left that may be irritating and numb the pain), and my favorite A&D (its like petroleum jelly but with vitamins; heals irritation overnight). Take all of this to the hospital with you because when your bowels wake up you will need it.
General Tips
Have plenty of comfy clothes on hand. You are still recovering from a major surgery. Also, prepare a lot of gatorade/powerade/pedialight/vitamin water because you will need a lot of it after the surgery.
There you go, much simpler than the first surgery.
Tuesday, August 9, 2011
Thursday, June 30, 2011
Joplin Relief
I'm from Missouri and we do battle a lot of tornadoes around here. So, when I heard about the Joplin tornadoes, I knew how drastic and devestating it had to be. Also, I knew I had to help in some way, especially in my own state. On a separate website, I heard that there are no ostomy supplies in Joplin because the tornado hit the hosptial. A man who is the head of the Joplin Missouri Ostomy Association is collecting ostomy supplies from people and giving it to ostomates in need. Please donate if you can!
Benjamin Moore
7589 SE Quaker Road
Riverton KS 66770
Benjamin Moore
7589 SE Quaker Road
Riverton KS 66770
Living With an Ileostomy
So, living with an ileostomy can be really hard at times but after a while, you do get used to it. I had the bag for 3 months and during that time, I found some real tips and tricks to make living with it easier. Here are some advice and instructions for living with an ileostomy.
Changing the Bag (for a 2 piece appliance)
Knowing how to change the actual bag when you have a 2 piece is actually quite simple and can come in handy. Sometimes the bag can get punctured (like from your cat like mine always did...ugh) or it just maybe a faulty bag. When you find that it is not working like it is supposed to, all you have to do is empty it (which I will explain later), then unclip the bag from the wafer. Throw it out and replace it quickly because the stoma can release stool pretty quickly and unexpectedly! Viola, simple.
Changing the Whole Appliance (for 1 piece and 2 piece)
When you need to change the whole appliance, it can be quite frustrating. Try to change it at a time when you aren't releasing a lot of stool of when your stoma seems to be quieting down. I always used to change it in the morning right when I got up because I hadn't ate in hours and my guts still seemed to be a little asleep. For the changing of everything, you will need:
Sometimes, the wafer may need shaping around your incision (my incision broke open, so I had to cut off some of the wafer.) Also, the stoma can be ornery and spit up when you are changing the appliance. This will make it a longer process.
Emptying the bag
When your bag gets about 3/4s full, it is probably best advised to empty it. It's a pretty easy process and will happen many times a day. First, make sure you have some gloves if you want them. I found that I was more at ease when I didn't have to get my hands dirty. Also, I liked to prepare the toilet paper before I would empty the bag. I usually used 3 separate sets of paper with multiple pieces in each and set them on my leg. Next, sit as far back on the toilet as possible with your legs spread apart. Position the bag so that it falls between your legs. Lift the end up and undue the hooking or closure. Slowly, lower the end and let the stool fall out into the toilet. Use your fingers to pinch the outside of the bag to get the rest of the stool out. Take some paper and wipe the end of the bag. Then take paper and wipe the inside of the closure. Next, close up the end of the bag. Finally, take the last of the paper and wipe the outside of the closed end for good measure. After I was done emptying the bag, I would take some of the air neutralizing spray and spray the bathroom, if I was in a public place.
Also, my bag would fill with gas from time to time. I had a filter on my bags, but if it ever got wet, the filter would no longer release the gas from my bag. So, I would have to either release the gas when I would empty the bag or burp it. Burping it is only possible for a 2 piece appliance. Simply, I would be in a standing position and then unclip some of the bag from the wafer and the gas would come out. Then I would reclip it and be all set.
Traveling with an Ileostomy
If I went anywhere, I made sure that I had extra supplies with me just in case I needed to change the appliance (I did have to do this once). When I was in the hospital, my ostomy nurse gave me a little travel sized bag that kind of looked like a fanny pack (no you don't have to wear it lol, but that is an option). Inside of it I would keep and extra bag and wafer, glue/paste, spray, gloves, a mirror, scissors, baby powder, disposable bags, and skin wipes. Pretty much anything I needed if I needed to change the appliance or empty the bag.
Diet with the Ileostomy
The diet with an ileostomy sucks. There really is no way to sugar coat that. You have to avoid anything that is roughage (raw fruits and veggies, the skins on fruits and veggies, nuts), insoluble food (some veggies, nuts, mushrooms, Chinese veggies, sausage casings) and whole wheats or oatmeal. Pretty much anything that could create a blockage, and anything that is healthy. This website has a special page specifically on dietary guidelines.
To prevent dehydration, I would eat at least one thing that was absorbent (carbs, potatoes) with every meal. I still eat that way. Also, I would drink a lot of gatorade, vitamin water, powerade, or water to make sure that I was fully hydrated. This was my biggest struggle. I'm not a big fan of drinking a lot, so I had to change my habits. Plus, I would take a lot of immodium to thicken up my output.
Skin Care
Sometimes, under the wafer, you can get dermatitis. It looks pretty nasty.
It is usually caused by leakage or, in my case, an allergic reaction to the glues. I ended up getting it and it is tender but extremely itchy. I remember ruining wafers from all the scratching. If you get it, treat it quickly. You will feel much better. I ordered a skin care gel from my ostomy supplier (Edgepark) that worked really well. There are plenty of options and insurance will cover it. I also bought little silicone sheets called Duoderm that worked really well. When changing my appliance, I would put the gel on the dermatitis, then put a duoderm sheet on top (I would cut a whole in the middle for the stoma). I would then apply the wafer on top of the duoderm sheet. Eventually, the dermatitis went away.
Clothing Options
I wore only baby doll tops and dresses when I had the ostomy. I just found it easier and less detectable than when wearing regular clothing. I went out and bought about 10 shirts before my surgery to prepare for the months with the bag. Some people wear regular clothing and wear special belts that hide the bags. But, I didn't really understand how the bag could fill up and not be noticeable or blow up from under the pressure of the belt restricted to the abdomen. For bottoms, I usually wore low cut pants that wouldn't rub against the ileostomy. We also mad a makeshift jean pouch (made from old jeans) that was like a pocket with a belt. I would put the ileostomy bag in the jean pocket and hook the jean belt in my belt loops. It worked really well and would allow me to not have to put the bag under my pants. In this picture you can kind of see it on my right leg:
![]()
Changing the Bag (for a 2 piece appliance)
Knowing how to change the actual bag when you have a 2 piece is actually quite simple and can come in handy. Sometimes the bag can get punctured (like from your cat like mine always did...ugh) or it just maybe a faulty bag. When you find that it is not working like it is supposed to, all you have to do is empty it (which I will explain later), then unclip the bag from the wafer. Throw it out and replace it quickly because the stoma can release stool pretty quickly and unexpectedly! Viola, simple.
Changing the Whole Appliance (for 1 piece and 2 piece)
When you need to change the whole appliance, it can be quite frustrating. Try to change it at a time when you aren't releasing a lot of stool of when your stoma seems to be quieting down. I always used to change it in the morning right when I got up because I hadn't ate in hours and my guts still seemed to be a little asleep. For the changing of everything, you will need:
- A new wafer and bag
- Around 2 wet washcloths (make sure when you first buy them to wash them because the chemicals left on them can sometimes be harmful to your stoma)
- 3 or more dry washcloths
- Baby powder
- Ileostomy skin glue and/or pliable glues (shaped like doughnuts)
- A mirror
- A plastic bag
- Skin protectant wipes
- Scissors
Sometimes, the wafer may need shaping around your incision (my incision broke open, so I had to cut off some of the wafer.) Also, the stoma can be ornery and spit up when you are changing the appliance. This will make it a longer process.
Emptying the bag
When your bag gets about 3/4s full, it is probably best advised to empty it. It's a pretty easy process and will happen many times a day. First, make sure you have some gloves if you want them. I found that I was more at ease when I didn't have to get my hands dirty. Also, I liked to prepare the toilet paper before I would empty the bag. I usually used 3 separate sets of paper with multiple pieces in each and set them on my leg. Next, sit as far back on the toilet as possible with your legs spread apart. Position the bag so that it falls between your legs. Lift the end up and undue the hooking or closure. Slowly, lower the end and let the stool fall out into the toilet. Use your fingers to pinch the outside of the bag to get the rest of the stool out. Take some paper and wipe the end of the bag. Then take paper and wipe the inside of the closure. Next, close up the end of the bag. Finally, take the last of the paper and wipe the outside of the closed end for good measure. After I was done emptying the bag, I would take some of the air neutralizing spray and spray the bathroom, if I was in a public place.
Also, my bag would fill with gas from time to time. I had a filter on my bags, but if it ever got wet, the filter would no longer release the gas from my bag. So, I would have to either release the gas when I would empty the bag or burp it. Burping it is only possible for a 2 piece appliance. Simply, I would be in a standing position and then unclip some of the bag from the wafer and the gas would come out. Then I would reclip it and be all set.
Traveling with an Ileostomy
If I went anywhere, I made sure that I had extra supplies with me just in case I needed to change the appliance (I did have to do this once). When I was in the hospital, my ostomy nurse gave me a little travel sized bag that kind of looked like a fanny pack (no you don't have to wear it lol, but that is an option). Inside of it I would keep and extra bag and wafer, glue/paste, spray, gloves, a mirror, scissors, baby powder, disposable bags, and skin wipes. Pretty much anything I needed if I needed to change the appliance or empty the bag.
Diet with the Ileostomy
The diet with an ileostomy sucks. There really is no way to sugar coat that. You have to avoid anything that is roughage (raw fruits and veggies, the skins on fruits and veggies, nuts), insoluble food (some veggies, nuts, mushrooms, Chinese veggies, sausage casings) and whole wheats or oatmeal. Pretty much anything that could create a blockage, and anything that is healthy. This website has a special page specifically on dietary guidelines.
To prevent dehydration, I would eat at least one thing that was absorbent (carbs, potatoes) with every meal. I still eat that way. Also, I would drink a lot of gatorade, vitamin water, powerade, or water to make sure that I was fully hydrated. This was my biggest struggle. I'm not a big fan of drinking a lot, so I had to change my habits. Plus, I would take a lot of immodium to thicken up my output.
Skin Care
Sometimes, under the wafer, you can get dermatitis. It looks pretty nasty.
 |
| http://www.allaboutbowelsurgery.org/Shared/stoma_care/clinical/skin_problems/soreness.htm |
Clothing Options
I wore only baby doll tops and dresses when I had the ostomy. I just found it easier and less detectable than when wearing regular clothing. I went out and bought about 10 shirts before my surgery to prepare for the months with the bag. Some people wear regular clothing and wear special belts that hide the bags. But, I didn't really understand how the bag could fill up and not be noticeable or blow up from under the pressure of the belt restricted to the abdomen. For bottoms, I usually wore low cut pants that wouldn't rub against the ileostomy. We also mad a makeshift jean pouch (made from old jeans) that was like a pocket with a belt. I would put the ileostomy bag in the jean pocket and hook the jean belt in my belt loops. It worked really well and would allow me to not have to put the bag under my pants. In this picture you can kind of see it on my right leg:
Pretty undetectable right? I really liked it.
Showering with the Ileostomy
So, I'm not going to lie, I didn't shower with the ileostomy. Some people may want to, there are possible ways, but I just found it easier to sponge bathe. Now, don't get me wrong. I was not gross. I made sure I was clean. But, if you are going to have the ileostomy for a long time, you will probably want to find a way to to shower. I only had it for 3 months. I heard that some people put press and seal saran wrap around the wafer and take the bag off. I don't know how that would completely keep it dry though. Also some people, I guess, wrap saran wrap all around their body. That seems extensive. Other people also decide to just take off their whole appliance, shower with the stoma (make sure no soap gets on it) and then reapply a new appliance. That seemed easiest except for when your skin is moist and you need to apply another appliance before the stoma spits up. So, I opted for sponge bathing.
Embarrassing Moments
The stoma makes noise. A lot of noise. So, when it sounds like a fart, just tell people the truth. My friends were really understanding. It actually kind of became part of our jokes for the summer. Also, make some humor with it. If not, you will be pretty depressed and embarrassed. We named my stoma Mona. Therefore, whenever she would spit up or make noise, we would go "Stop it Mona", or "Shut up Mona", or "Calm down Mona". It makes dealing with the ileostomy just a little easier.
Little Tidbits and Tips
- Sleeping can be a little frustrating. Obviously you can't sleep on your stomach. I mostly slept on my back and rarely slept on my sides (my insides were still a little sore and laying on my side would sometimes irritate them). You'll get used to it after a while.
- Don't swim in chlorine. It will irritate your stoma. They have special coverings for the stoma when you get in water which you can also use for showering.
- Order whatever you need before you run out. You never know when you may need to change your bag several times in one day
- A good appliance should be able to run for around 5-7 days. At first, that may be a little hard, but eventually you will get around to that.
- Avoid animals with claws on your stomach. My cat was the cause of many problems.
- STAY HYDRATED
- The stoma will more than likely change shape and size. Make sure your appliances fit your stoma no matter what.
- Check for leaking often
- If you get a blockage, don't panic. Call your ostomy nurse and they will guide you through it.
- Sometimes your bag can fill a lot in the middle of the night. I would set an alarm half way through the night to check my bag.
Thursday, May 19, 2011
One Year Later After Surgery #1
It has been one year since I have lost my colon. At first, people take that as a bad thing. "Oh, I'm so sorry you had to go through that." I'm not. It made me alive again. I never realized how unhappy I was until I didn't have to worry about my colitis anymore. I have never been so happy, and confident, and in love with myself and life. This surgery made me me. It was the best decision I have ever made. Yes, there were some setbacks, but that is part of the process. You learn more about yourself and what you can handle. You also realize who are your true friends. No one abandoned me. But a lot of people were awkward around me or couldn't get themselves to come to the hospital to see me. I am a different person. I still have my quirks but I appreciate them more. I am more trusting and willing to be vulnerable. I know what I want in life and never settle. Without colitis, I can finally focus on me. This surgery was a god send.
Saturday, May 14, 2011
Recovery From Surgery #1
So, recovery from the initial surgery is kind of brutal. Besides the complications I had, I was very tired and just plain worn out. I would wake up at 10 then go to sleep at 9. I guess it's just really hard on your system to have this surgery.
My incisions did hurt. It would hurt to move in a certain way or to try to sit up. DO NOT, I repeat, DO NOT USE JUST YOUR ABS TO SIT UP. First of all, it hurts. Second, it can cause some major damage to the cut muscles and new incision. Push off from your arms, it helps a lot. Also, my incisions were split open so that made them more painful. However, I would like to say, that it didn't hurt enough to take pain meds. It would only hurt whenever I moved wrong but never excrutiating. When I was just sitting there, I really was in no pain.
I did have problems with dehydration. That was one of the major complications that caused me to go back to the hospital. I wrote a more descriptive post on it called Complications from Surgery #1. But, after I got out of the hospital, I was well on track to keep myself hydrated. I definitely still had symptoms of dehydration, but I knew how to live with and eventually got myself out of it. Symptoms of dehydration include: tachycardia (fast heart beat), headache, dark urine, increased breathing rate, loss of appetite (beware of this one), sunken in eyes, dry skin, and overall fatigue. It is really easy to get dehydrated, but since you have the bag, you will be able to see the consistency of your stool (gross topic, I know) which well help you determine if you need to take some immodium, fiber supplements, or eat thickening foods. I lived on gatorade. Actually, I still do. Well, I should say that, or powerade, or vitamin water. I find vitamin water works the best when trying to get rehydrated.
During recovery, I watched a lot of tv......I mean a lot. Movies, the world cup, VH1 reality shows. There wasn't a lot to do. You aren't suppose to be super physical during this time. It could mess up the incisions. This includes walking a lot, exercising, and household chores (like laundry). Do not lift anything that is more than 10 pounds or carry anything up the stairs. You need to build up your strength. So, you will probably lose a lot of muscle tone. That part really sucks.
Recovery lasts about 4 to 6 weeks, more on the latter. By the end of recovery, I had cabin fever pretty bad. I still remember the first time I got out of the house and I was very excited. Oh, also, you cannot drive while you are recovering.
My incisions did hurt. It would hurt to move in a certain way or to try to sit up. DO NOT, I repeat, DO NOT USE JUST YOUR ABS TO SIT UP. First of all, it hurts. Second, it can cause some major damage to the cut muscles and new incision. Push off from your arms, it helps a lot. Also, my incisions were split open so that made them more painful. However, I would like to say, that it didn't hurt enough to take pain meds. It would only hurt whenever I moved wrong but never excrutiating. When I was just sitting there, I really was in no pain.
I did have problems with dehydration. That was one of the major complications that caused me to go back to the hospital. I wrote a more descriptive post on it called Complications from Surgery #1. But, after I got out of the hospital, I was well on track to keep myself hydrated. I definitely still had symptoms of dehydration, but I knew how to live with and eventually got myself out of it. Symptoms of dehydration include: tachycardia (fast heart beat), headache, dark urine, increased breathing rate, loss of appetite (beware of this one), sunken in eyes, dry skin, and overall fatigue. It is really easy to get dehydrated, but since you have the bag, you will be able to see the consistency of your stool (gross topic, I know) which well help you determine if you need to take some immodium, fiber supplements, or eat thickening foods. I lived on gatorade. Actually, I still do. Well, I should say that, or powerade, or vitamin water. I find vitamin water works the best when trying to get rehydrated.
During recovery, I watched a lot of tv......I mean a lot. Movies, the world cup, VH1 reality shows. There wasn't a lot to do. You aren't suppose to be super physical during this time. It could mess up the incisions. This includes walking a lot, exercising, and household chores (like laundry). Do not lift anything that is more than 10 pounds or carry anything up the stairs. You need to build up your strength. So, you will probably lose a lot of muscle tone. That part really sucks.
Recovery lasts about 4 to 6 weeks, more on the latter. By the end of recovery, I had cabin fever pretty bad. I still remember the first time I got out of the house and I was very excited. Oh, also, you cannot drive while you are recovering.
Wednesday, April 13, 2011
Ileostomy Basics
Having an ileostomy can be quite the confusing and frankly scary situation. However, once you have the basics down and understand your own personal ostomy, then you are golden.
What Exactly is an Ileostomy?
Well, an ileostomy is an opening in the lower stomach (usually in the right lower quadrant for this surgery) that part of your small intestine is inserted through to create a stoma. Through this stoma, your waste is secreted and stored in an ileostomy bag appliance that fills up until you need to empty it.
http://drugster.info/ail/pathography/3521/
http://www.cancerhelp.org.uk/type/bowel-cancer/treatment/surgery/if-you-need-an-ileostomy-for-bowel-cancer
The stoma kind of looks like a pair of lips. If you are a science/medical nerd like I am, it looks kind of cool and is an awesome concept. It is literally an inch of your small intestine that you can see, touch, hear (yes it makes noises). But if that's not your thing, it may seem a little weird. Also, because the stoma is a part of your small intestine that works constantly, it will literally move. Sometimes, you can even feel it move.
The ileostomy is important and necessary because the newly constructed j pouch needs to heal without waste moving through it. I had a loop ileostomy, which is literally a loop of your intestine pulled through your skin with a cut half way through the intestine so that waste is excreted but nothing goes into the j pouch.
Ileostomy Supplies and Appliances
The ileostomy actually does require quite a bit of supplies. However, your insurance should cover most of the costs. These supplies include:
Another important component is the wafer. I used a 2 piece bag (separate) wafer that was presized to my stoma and square in shape. With a 2 piece, you have a separate wafer that you can change preferences over. If your stoma changes shape (it more than likely will), you can buy a different wafer but still keep the same bags. Also, you can get wafers that you can cut to size if your stoma is a strange shape. If you get a one piece, the wafer is already connected to the bag. The wafer has an adhesive backing that attaches to the skin.
When having an ostomy, the adhesive on the wafer is not strong enough to support the bag (this lead to my wafer almost falling off during my hospital stay from the complications, messy). Therefore, I strongly advice using the glue/pastes that are available. These are brown thick glues that you squeeze around the ring of the ostomy bag to secure it to the skin but also to create a barrier against any leakage. There are also maliable rings that you can use that you simply warm and shape to the size of your ring on the wafer. I used the glue for a while, then started a combination of the glue and the rings for extra security.
Skin protectant wipes can also be very helpful with the attachment of your appliance to your skin. These look like small wet wipes but are very sticky. However, they also create a thin barrier on your skin, therefore creating any skin irritation. I didn't always use these, but after I got dermatitis (which I will explain later) I found these to be very helpful. Initially, I didn't think scissors would be that helpful, but, believe me, they are. If you ever need to change the shape of your wafer or shorten the sides because the wafer is getting in the way of your incision (like it was in my case) then scissors are very important. Cheap washcloths are absolutely essential. When you change your whole appliance (bag and wafer) you need the washcloths to clean up the mess. It can get kinda messy. So, go to walmart, buy some cheap washcloths, wash them when you get home (there can be chemicals on the cloths that may irritate your stoma) and use them and bleach them when you clean them. Also, baby powder can be important to changing your appliance. This is used to create a dry surface for the wafer to attach to. The wafer will not attach to the skin if it is moist.
As for optional supplies, I used most them on a daily basis, but it really up to your preference. Gloves are really handy when you are draining the bag. I don't like to get stool on my hands (I don't know anyone who would) so I took gloves with me everywhere. A mirror is somewhat a good thing when you are changing your bag. Sometimes you can't see the bottom side of the stoma, so the mirror allows you to see that and see whatever excess stool you need to clean. Also, an ostomy belt seems to be a pretty good item. I got mine free in the hospital, but they have others online. It helps with supporting the weight of the bag and also prevents it from popping off by keeping the appliance close to your skin (had a bad experience and realized that the belt is a great invention). Finally, odor sprays or deodorants can be really handy. The stool is going to smell bad, really bad. It's kind of nice to have a spray when you go somewhere public. Also, the deodorant that goes into the bag really helps with preventing any kind of smell.
What Exactly is an Ileostomy?
Well, an ileostomy is an opening in the lower stomach (usually in the right lower quadrant for this surgery) that part of your small intestine is inserted through to create a stoma. Through this stoma, your waste is secreted and stored in an ileostomy bag appliance that fills up until you need to empty it.
http://drugster.info/ail/pathography/3521/
http://www.cancerhelp.org.uk/type/bowel-cancer/treatment/surgery/if-you-need-an-ileostomy-for-bowel-cancer
The stoma kind of looks like a pair of lips. If you are a science/medical nerd like I am, it looks kind of cool and is an awesome concept. It is literally an inch of your small intestine that you can see, touch, hear (yes it makes noises). But if that's not your thing, it may seem a little weird. Also, because the stoma is a part of your small intestine that works constantly, it will literally move. Sometimes, you can even feel it move.
The ileostomy is important and necessary because the newly constructed j pouch needs to heal without waste moving through it. I had a loop ileostomy, which is literally a loop of your intestine pulled through your skin with a cut half way through the intestine so that waste is excreted but nothing goes into the j pouch.
Ileostomy Supplies and Appliances
The ileostomy actually does require quite a bit of supplies. However, your insurance should cover most of the costs. These supplies include:
- Ileostomy bag- either 2 piece or 1 piece. 2 piece has a detachable bag from the wafer (the part that sticks to your skin that has a whole in the middle for the stoma), while the 1 piece does not have a detachable bag from the wafer
- Adhesive glue- either a paste or maliable ring to help hold the wafer onto the skin and to seal any holes and create a barrier against any leakage
- Skin protectant wipes- small, sticky wipes that create a barrier between your skin and the acidic stool just in case there is a leak. It is also sticky to ensure that the wafer sticks to the skin.
- Scissors- small, medical scissors to cut the wafer to size if need be
- Cheap washcloths- to clean up the stool around the stoma when changing the bag and wafer
- Baby powder- used to ensure that the skin is dry and allows for the wafer to stick to the skin better
- A mirror- sometimes included with your package of first time supplies, but used to see around the stoma that is hard to see from your angle
- Gloves- sometimes people may use gloves when changing the appliance to prevent getting any leakage of your hands
- Ostomy belt- a stretchy belt that attaches to wafers that have the attachment on them to ensure that the ileostomy is securely attached to the body. Good for when the bag gets full because the weight may pull on the wafer
- Odor sprays or deodorants- used to eliminate the odor of the stool. The sprays are good for the rooms or restrooms that you drain the bag or change the bag, and the deodorants are a liquid that is inserted into the bag to make the stool not smell when you drain or change the bag
Another important component is the wafer. I used a 2 piece bag (separate) wafer that was presized to my stoma and square in shape. With a 2 piece, you have a separate wafer that you can change preferences over. If your stoma changes shape (it more than likely will), you can buy a different wafer but still keep the same bags. Also, you can get wafers that you can cut to size if your stoma is a strange shape. If you get a one piece, the wafer is already connected to the bag. The wafer has an adhesive backing that attaches to the skin.
When having an ostomy, the adhesive on the wafer is not strong enough to support the bag (this lead to my wafer almost falling off during my hospital stay from the complications, messy). Therefore, I strongly advice using the glue/pastes that are available. These are brown thick glues that you squeeze around the ring of the ostomy bag to secure it to the skin but also to create a barrier against any leakage. There are also maliable rings that you can use that you simply warm and shape to the size of your ring on the wafer. I used the glue for a while, then started a combination of the glue and the rings for extra security.
Skin protectant wipes can also be very helpful with the attachment of your appliance to your skin. These look like small wet wipes but are very sticky. However, they also create a thin barrier on your skin, therefore creating any skin irritation. I didn't always use these, but after I got dermatitis (which I will explain later) I found these to be very helpful. Initially, I didn't think scissors would be that helpful, but, believe me, they are. If you ever need to change the shape of your wafer or shorten the sides because the wafer is getting in the way of your incision (like it was in my case) then scissors are very important. Cheap washcloths are absolutely essential. When you change your whole appliance (bag and wafer) you need the washcloths to clean up the mess. It can get kinda messy. So, go to walmart, buy some cheap washcloths, wash them when you get home (there can be chemicals on the cloths that may irritate your stoma) and use them and bleach them when you clean them. Also, baby powder can be important to changing your appliance. This is used to create a dry surface for the wafer to attach to. The wafer will not attach to the skin if it is moist.
As for optional supplies, I used most them on a daily basis, but it really up to your preference. Gloves are really handy when you are draining the bag. I don't like to get stool on my hands (I don't know anyone who would) so I took gloves with me everywhere. A mirror is somewhat a good thing when you are changing your bag. Sometimes you can't see the bottom side of the stoma, so the mirror allows you to see that and see whatever excess stool you need to clean. Also, an ostomy belt seems to be a pretty good item. I got mine free in the hospital, but they have others online. It helps with supporting the weight of the bag and also prevents it from popping off by keeping the appliance close to your skin (had a bad experience and realized that the belt is a great invention). Finally, odor sprays or deodorants can be really handy. The stool is going to smell bad, really bad. It's kind of nice to have a spray when you go somewhere public. Also, the deodorant that goes into the bag really helps with preventing any kind of smell.
Wednesday, April 6, 2011
Complications
So, when I left the hospital, I was absolutely ecstatic. I was very happy to be home. But, by a week later I had to go back to the hospital because of some complications.
The Week Prior to Hospital Stay #2
As I mentioned in my earlier posts, my incision had started to open up towards the end of my stay at the hospital. My surgeon's associate said to clean it with peroxide and it should be fine. Well, like I was told, I cleaned it with peroxide everyday. BUT when my Home Health Nurses came to check up on me, they said to quit doing that because peroxide will destroy healthy cells, therefore preventing any healing. They told me to just clean it out with saline everyday and cover with gauze. To give a little background on my home health nurses, the hospital assigned them to come to my house 3 times a week to check on how I was doing and to help me with my new ostomy. They generally would check my vitals, watch me change the ostomy, and check my incision.
During her second visit, my nurse noticed that I had a rather high resting heart rate (130s when it should be between 60-90). She felt that is was probably just my body reacting to the trauma of the surgery and not to worry too much. But, she was worried about my incision. The incision was growing quite quickly. It was open about 6 inches lengthwise from the bottom(remember it is only an 8 inch incision) and was starting to open at the top of the incision also. She said to keep an eye on it and call her if I had any concerns. About a week after leaving the hospital, she checked my incision and was shocked. It was now open about 2 inches wide plus the 6 inches in length. She recommended that I go to the emergency room.
Hospital Stay # 2
That night, my parents and I went to the ER to hopefully get my incision restitched. However, when I was getting my vitals checked, they noticed that my resting heart rate was above 150. Extremely high and dangerous. They took me to one of the beds and two doctors came to assess my incision and my heart rate. They looked at the incision and found that it was no way infected, but that there was nothing they could do about restitching it. It was already over 2 weeks since it was first opened and bacteria could already be living it in and they didn't want to risk creating an infection. However, they were very concerned about my heart rate. They had me do a CT scan of my chest to see if there were any clots....they didn't find any. They then decided to keep me overnight in the Telemetry (heart monitoring) section of the hospital with heart monitors.
Over the next few days, my heart rate started to go down slowly but surely. They found that I was dehydrated with low sodium levels and assumed this was making my heart rate so high. They then began to fill me with fluids with high sodium levels but found another problem: I was starting to get fevers. They thought that maybe I had an infection in my incision so they started me on antibiotics. When this didn't prevent my fevers, they assumed that maybe the infection was somewhere else in body or that it was so small in my incision that it couldn't be seen. To find where the infection was, they decided to do this strange test, I'm not sure what it is called, but it involves taking blood, filling that blood with radioactive particles, then reinserting that blood into your body. In about two days, they take a CT scan of you to see if any parts of you are glowing. It was a running joke in my family that I was radioactive after that test...and technically I was (the radioactivity doesn't wear off for about 3 months lol!). However, when they did this test, they couldn't find any glowing parts indicating an infection. Luckily, my fevers started to go down, and they assumed that it was because my lack of walking (I'm a pretty lazy person, especially after this surgery). I was somewhat of a medical mystery because a lot of times they seemed dumbfounded when they couldn't figure out the causes of my complications.
As for my incision, I stated earlier that they weren't able to stitch it up because of the risk of an infection. However, I did see a surgeon who was very thorough in analysing the state of my incison (he stuck his finger and rubbed hard into the incision to determine that it didn't have any pus, let's just say that it hurt, A LOT). He put one stitch in the middle of it to prevent it from widening. Unfortunately, the stitch broke a few days later, BUT my incision luckily didn't widen.
All in all, I was in the hospital for a total of 7 days. This makes my total for the summer, so far, 18 days.
Moral of the Story
So what did I learn from this frustrating experience? Drink plenty of liquids. My doctors didn't allow me to use immodium or any medical thickeners of the sort in the first few weeks because they felt it may hinder the healing process, so I lost a lot of liquid. Because you can't take meds to thicken your stool in the first few days, you will want to eat a lot of thickening foods (potatoes, rice, noodles, white bread, starches, bananas, etc.) Also, watch your heart rate. If it gets as high as mine, you will absolutely know that something is wrong. Every time I stood up I would get out of breath within 5 seconds. You cannot risk overworking your heart that much. Your heart rate (at least for me) is a great indicator that you are dehydrated. You will probably not be thirsty when you are severely dehydrated because when you are dehydrated, your potassium levels are so low that they cannot send messages to your brain saying you need hydrated. Kind of a vicious circle, huh?
Medical Tests, Medicine, and Devices
The Week Prior to Hospital Stay #2
As I mentioned in my earlier posts, my incision had started to open up towards the end of my stay at the hospital. My surgeon's associate said to clean it with peroxide and it should be fine. Well, like I was told, I cleaned it with peroxide everyday. BUT when my Home Health Nurses came to check up on me, they said to quit doing that because peroxide will destroy healthy cells, therefore preventing any healing. They told me to just clean it out with saline everyday and cover with gauze. To give a little background on my home health nurses, the hospital assigned them to come to my house 3 times a week to check on how I was doing and to help me with my new ostomy. They generally would check my vitals, watch me change the ostomy, and check my incision.
During her second visit, my nurse noticed that I had a rather high resting heart rate (130s when it should be between 60-90). She felt that is was probably just my body reacting to the trauma of the surgery and not to worry too much. But, she was worried about my incision. The incision was growing quite quickly. It was open about 6 inches lengthwise from the bottom(remember it is only an 8 inch incision) and was starting to open at the top of the incision also. She said to keep an eye on it and call her if I had any concerns. About a week after leaving the hospital, she checked my incision and was shocked. It was now open about 2 inches wide plus the 6 inches in length. She recommended that I go to the emergency room.
Hospital Stay # 2
That night, my parents and I went to the ER to hopefully get my incision restitched. However, when I was getting my vitals checked, they noticed that my resting heart rate was above 150. Extremely high and dangerous. They took me to one of the beds and two doctors came to assess my incision and my heart rate. They looked at the incision and found that it was no way infected, but that there was nothing they could do about restitching it. It was already over 2 weeks since it was first opened and bacteria could already be living it in and they didn't want to risk creating an infection. However, they were very concerned about my heart rate. They had me do a CT scan of my chest to see if there were any clots....they didn't find any. They then decided to keep me overnight in the Telemetry (heart monitoring) section of the hospital with heart monitors.
Over the next few days, my heart rate started to go down slowly but surely. They found that I was dehydrated with low sodium levels and assumed this was making my heart rate so high. They then began to fill me with fluids with high sodium levels but found another problem: I was starting to get fevers. They thought that maybe I had an infection in my incision so they started me on antibiotics. When this didn't prevent my fevers, they assumed that maybe the infection was somewhere else in body or that it was so small in my incision that it couldn't be seen. To find where the infection was, they decided to do this strange test, I'm not sure what it is called, but it involves taking blood, filling that blood with radioactive particles, then reinserting that blood into your body. In about two days, they take a CT scan of you to see if any parts of you are glowing. It was a running joke in my family that I was radioactive after that test...and technically I was (the radioactivity doesn't wear off for about 3 months lol!). However, when they did this test, they couldn't find any glowing parts indicating an infection. Luckily, my fevers started to go down, and they assumed that it was because my lack of walking (I'm a pretty lazy person, especially after this surgery). I was somewhat of a medical mystery because a lot of times they seemed dumbfounded when they couldn't figure out the causes of my complications.
As for my incision, I stated earlier that they weren't able to stitch it up because of the risk of an infection. However, I did see a surgeon who was very thorough in analysing the state of my incison (he stuck his finger and rubbed hard into the incision to determine that it didn't have any pus, let's just say that it hurt, A LOT). He put one stitch in the middle of it to prevent it from widening. Unfortunately, the stitch broke a few days later, BUT my incision luckily didn't widen.
All in all, I was in the hospital for a total of 7 days. This makes my total for the summer, so far, 18 days.
Moral of the Story
So what did I learn from this frustrating experience? Drink plenty of liquids. My doctors didn't allow me to use immodium or any medical thickeners of the sort in the first few weeks because they felt it may hinder the healing process, so I lost a lot of liquid. Because you can't take meds to thicken your stool in the first few days, you will want to eat a lot of thickening foods (potatoes, rice, noodles, white bread, starches, bananas, etc.) Also, watch your heart rate. If it gets as high as mine, you will absolutely know that something is wrong. Every time I stood up I would get out of breath within 5 seconds. You cannot risk overworking your heart that much. Your heart rate (at least for me) is a great indicator that you are dehydrated. You will probably not be thirsty when you are severely dehydrated because when you are dehydrated, your potassium levels are so low that they cannot send messages to your brain saying you need hydrated. Kind of a vicious circle, huh?
Medical Tests, Medicine, and Devices
- CT scan- large x-ray that goes all the way around your body to find problems. Need an IV with iodine contrast to spot this problems
- Heart monitor- a device that shows your heart rate and rhythms
- IV- fluid administration
- Vitals- blood pressure, temperature, and heart rate
- Antibotics- can't remember which one I was prescribed but it was to fight my suspected infection
- Tylenol- used to lower my fevers
- Blood thinner injection- very small shot in the stomach that somewhat stung. Used to prevent any blood clots in my body from forming (blood clots are common after a surgery)
- Doppler ultrasound- literally an ultrasound on your legs to make sure that you do not have a DVT (deep vein thrombosis). Used to figure out the reason for my high heart rate
- Radioactive tagged blood particles test- used to find my infection
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