Posted by: activeguts | January 19, 2016

Trouble with Food

I just wanted to update everyone (that wants to read) as I’ve had a bunch of questions recently. November of last year we set an approximate date for May 4th for jpouch surgery and reconstruction of the muscles/fascia of my abdominal wall. The date may move as I am still planning on a 30 pound weight loss. I will have another ostomy for awhile (a couple of months) and then they will pop it back in and hopefully I’ll be done!

Probably since the beginning of the year I’ve had new abdominal pain and at one point I had signs of a blockage (very distended stomach, discomfort, not alot of food going through). Things eventually passed through but I continued to have pain, nausea, and not much of an appetite.  Protein and bread move through ok, but fruit and vegetables are the problem. I’ve given baby food a try at the recommendation of a dietician.

But I’ve still had problems. Just a short primer, when normal people poop they might end up with solid food their stool. Well, when you have no colon you end up seeing many chunks of whole food. Lettuce, for example, comes out of me exactly as it went in. Earlier this week I had a piece of corn end up in my ostomy bag. I don’t even know when I last had corn. Then on Saturday I saw a piece of pepper come out. I haven’t had peppers in two weeks, at least.  When I started having blockage symptoms I called Cleveland. They told me to cut out the fiber (aka no vegetables) and do the protein and carb diet.  I might have a fold in my intestines or a food bolus (ball of food) stuck.

So I get to go to Cleveland again.  The weather forecasts have been bouncing back and forth between three inches of snow and nothing, so my mom and I are driving up Tuesday. I have an appointment with my surgeon Wednesday morning and a six-month Rheumatology appointment in the afternoon.  For the abdominal issues, I’m not sure if I’ll have to hang around for tests or not so my mom and I are packing to stay for a couple of days.

Posted by: activeguts | April 6, 2015

An Open Letter to the CDC

Dear CDC

I recently ran across your smoking awareness commercial featuring Julia. Julia developed colon cancer. I believe the intended message of your commercial was good: Smoking is a risk factor in developing colon cancer. However your commercial focuses not just on the cancer and the after effects but also vilifies ostomies. Julia proclaims that:

 You go whenever it goes. You have no control. If it comes loose it smells. I had to wear it for a whole year. I was at home the majority of the time because I was scared that it would come loose and it would smell and I didn’t want to be around anyone. So I was really kind of like stuck at home.

I am ostomate. I have no colon and have an ileostomy. I did nothing to cause my colon to fail. My immune system decided my colon had to go, and started attacking it. Removing my colon has saved me much pain and misery. For other people, it is a legitimate life saver.

Here’s the truth about life with a stoma. Yes, it poops when it wants. Mine does constantly. But in truth everybody poops. Just think, I don’t have all those poop remnants on my butt. Do you think wiping gets rid of everything? The ostomy should not come loose and should not smell. If it comes loose or leaks, then you have a bagging problem. There are hundreds of products and pouching systems to accommodate a variety of problems.   You just need to visit www.wocn.org to find nurses in your area that specialize in ostomy pouches.

More importantly, I am NOT a recluse. I live a normal life.  I exercise. I socialize. I teach college students. I have a job. I go to professional meetings. I hope to whitewater kayak this summer. I hope to climb this summer.  There’s nothing I can’t do just because I have an ostomy. It is not as ideal as having a colon, but it is the best my body will allow. I have numerous friends and acquaintances across the country that live a very full life with an ostomy. Rebecca Zomolo and OstomyOutdoors are just two wonderful public examples.

The minute I developed Inflammatory Bowel Disease, my colon’s time was limited. I failed all drug therapies, which were dangerous in themselves. I was sleeping 16 hours a day and barely functioning. I had no life. I had to run to the bathroom 20+ times a day. Plus, I had developed polyps at the ripe old age of 29! Polyps are sometimes a precursor to, you guessed it, colon cancer! Inflammatory Bowel Disease patients are at a higher risk of developing colon cancer. The risk is so great, that Gastroenterologists (AGA, ACG, and ASGE) recommend frequent screenings. My physicians recommend every two years at a minimum. So I made the decision. I voluntarily decided to have my colon removed and have an ileostomy put in place.

The truth is, sometimes the ostomy IS the best option. IBD patients chose an ostomy to increase their quality of life or to prevent colon cancer. Sometimes IBD causes toxic mega colon, resulting in colon removal and an ostomy. Other people have colonic inertia and find their lives greatly improved by having an ostomy. Those with Familial Adenomatous Polyposis also inherit an increased risk of colon cancer. Often those with the disease have their colons removed.

While I feel for Julia’s struggle, your ad contributes to common misunderstandings and fears about having an ostomy. Properly cared for ostomies do not smell. You do not become a recluse. The world does not end if you have an ostomy. You can live a full life. I wish Julia had had people around her that could tell her “It’s ok that you have an ostomy. Want to go have dinner?” I also wish media would present ostomies realistically. It’s time to break the cycle of belief that an ostomy means social isolation. I hope nobody that would benefit from having an ostomy ever sees your commercial and gets the wrong impression. After all, ostomies are life savers. Sometimes ostomies are chosen to prevent colon-cancer and after all, you are encouraging people not to smoke in order to not develop colon cancer. I certainly hope you aren’t saying “don’t smoke just so you don’t have to live with an ostomy.”

~Active

Posted by: activeguts | September 5, 2013

Overview – Two Month Stay at Cleveland Clinic

During the time I didn’t post, I did relatively ok.  I was just constantly ill with colds and such because Humira knocked down my immunity.  I did have one instance where my stoma got clogged.  My stoma was hurting and I thought I had pyoderma gangrenosum (autoimmune skin ulcers).  So I got in the shower without my bag and noticed that my abdomen was hard around my stoma (it should be soft).  My stoma was also sticking out.  Well, after some heat and pushing on the hard area for awhile, the blockage cleared.

Two months later I had more abdominal pain.  I was going to try a heating pad and pressure, but the pain kept increasing and I became nauseous.  I headed to the nearest ER (literally 2 miles away!).  They evaluated me immediately at the intake desk and in the meantime, I threw up.  They took me to the back and started setting up the standard tests (cat scan to look for blockage).  Eventually I looked at my stoma through my clear bag.   The stoma the part of my small intestines that sticks out of my stomach to pass waste.  It’s supposed to look red like the inside of your mouth.  Well, my stoma was turning purple.  That meant the blood supply was cut off.  I immediately called the nurse and she didn’t come for several minutes.  I poked my head out the curtain and told her this was a bad thing but she was discharging a patient in the hallway.  When she looked at it, she said it was just a little bruised and it was fine but that she would get the doctor.  I was freaked and knew better.  I was about to call the surgeon’s office myself when the doctor came in, agreed it wasn’t good, and called the office himself.  He came back in said I was going to be transported by ambulance to Cleveland (3.5 hours away…).  After several hours, they couldn’t find an ambulance to go that distance so it was decided to Life Flight me to Cleveland.  The surgeons wanted me there now.  I’m glad I flew because I was nauseous and that would have been one tough ride.  I had kept my parents up to date and they left from across the state to meet me.

The ride in the helicopter was uneventful.  I could look out the window but it made me nauseous.  They put me on oxygen because the air gets a bit thinner.  The ride was about 30 minutes.  I landed in Cleveland and they pulled me out of the helicopter.

Then I forget everything that happened the next three weeks.  This is what I’ve learned from my poor parents, who stood vigil for several weeks.

I’m sure I got in an elevator and was taken to a room, but I have no memory.  Apparently I signed the form to have surgery.  It turns out that my stoma got “pinched” and the blood supply was cut off.  By the time I had made it to Cleveland, it had turned black.  Everything went fine with the surgery and I was on my way to recovery and release.  Then things went downhill.

I was in alot of pain and my stomach was swelling.  The morphine pump couldn’t even keep up with me.  I was taken to surgery and they discovered that my intestines were ischemic – there was inadequate blood flow cause swelling and damage.  They had to decompress my intestines and they took off 4 liters of fluid.  They decided to leave my abdomen open (from breastbone to pubic bone) because there was so much swelling they couldn’t close.

After they surgery they left me intubated and knocked out.  I stayed knocked out for 8 days total.  During that time I went for another surgery on my intestines.  And then another emergency surgery.  During this last one, part of my small intestines fell apart in the surgeon’s hands.  They removed those intestines and then joined two good parts together.  The skin over my abdomen was finally joined back together, but the fascia and the abdominal muscles are still split.  I also don’t have a belly button anymore, which amused me.

I spent 22 days total in the ICU.  Apparently 6 of my 9 body systems were failing (kidneys not working, heart acting crazy, etc.)  My surgeon said “You went through hell.”  I spent another four or so weeks in a “normal” ward getting my blood levels back to normal, letting my giant wound healed, gaining strength back, and just recovering in general .  Once I was released, I went to rehab for a week.  Basically I went to another building in Cleveland and went through rehab.

I came home two weeks ago and I’m gaining strength every day.  I still have a long way to go.

 

Posted by: activeguts | November 30, 2012

Flash Update

So it’s been quite awhile since I last updated.  The primary problems have been going back to work plus having some additional medical related problems.  I swear that I still have a part-time job just visiting doctors.

Work – Work is good.  My biggest problem is getting up some mornings!  Stewart occasionally makes noises at the office but otherwise he has been well behaved!

Steroids – I FINALLY took my last dose of steroids two days ago.  It has been a long slooowwww taper.  I won’t be able to have my next surgery until I’ve been off of steroids for six months.  When I first started tapering, I started hurting.  Really hurting.  I thought I was just going through steroid withdrawal so we jumped my steroid dosing back up a bit and slowed the taper down.   Whenever I drop down, I can count on being useless the day after.  I just need soooo much sleep (anywhere from 14 – 18 hours).  Then the day after that I adjust and feel quite a bit better.  But I still kept hurting ALOT.

Arthritis – As I just mentioned, I started really hurting while tapering my Prednisone.  I had had steroid withdrawals before, but nothing that bad.  Then my fingers would randomly start swelling.  The swelling was primarily on my finger tips (“the pulp”).  Sometimes three fingers on the left hand would swells, then two fingers on the other hand would swell.  I also lost the ability to completely close my hands.  I decided it might be time to see a doctor about this.  I went to my primary and the initial diagnosis was ibd related arthritis (25% of IBD’ers develop some form of arthritis).  The steroids had likely been hiding the arthritis.  As I tapered down, the arthritis appeared.  I received a nice pack of Celebrex to hide some of the arthritis effects.  I arranged an appointment with a Rheumatologist to make sure that’s all I was dealing with.  People with auto-immune diseases are more likely to develop other auto-immune diseases.  So I was worried about having Rheumatoid Arthritis or some other conditions.

In the meantime, I went to my GI to talk about options.  I still have about 8 inches of colon left that is still symptomatic.  She prescribed Pentasa.  By this point, the random swellings had spread to my feet as well.  Being stubborn, I took a walk one day.  It hurt quite a bit.  I decided to not let the pain stop me pushed it for about 2 miles.  Well, that evening my feet were swollen, my toes were swollen to twice their size AND it was tons of pain to walk.  I seriously contemplated crawling around my apartment on several occasions and I think I have a pretty decent pain tolerance.  Upon hearing this, my GI upped my Celebrex to twice a day and gave me some nice pain killers.  Fortunately I haven’t had to use them too often.

I visited the Rheumatologist and learned that my bloodwork was fine (no Lupus, no RA).  They did a physical exam which was comprised of lightly squeezing and pressing on different joints.  That was interesting.  “Does this hurt”….”no, but it would have two days ago”  One of the hallmarks of IBD related arthritis is that it is migratory.  One day your right shoulder can hurt to move and the next day it’s your left knee.  At the end they said that I had IBD related arthritis.    Both the Rheumatologist and my GI said that getting my UC symptoms under control was the key to keeping the arthritis down.  He gave me several drug options…sulfasalasides (pills), Methotrexate (shots I think), and Humira (shots).    Pills have never been strong enough for me.  Methotrexate can take months to kick in and is effective for arthritis but not as effective for UC.  Humira is prescribed for arthritis and UC.  Interestingly, I guess the inflammatory mechanisms are similar for both RA and IBD related arthritis….and Humira is approved for UC and RA.  I wonder if there’s something to that.  Anyway,  I chose Humira.  I’ve taken the two starter doses.  I give myself shots every two weeks.  They come in a “pen” kind of like an epi-pen.  However, you have to hold the button down to completely dispense the drug.  Humira stings quite a bit.  But, I think it’s helping.  I’ve been feeling quite a bit more functional.  I truly feel bad for those who have chronic pain problems.

Peristomal Pyoderma Gangernosom – Up until three weeks or so ago, I was taken trips every other week to Cleveland Clinic to have my pyoderma treated.  That’s a 3.5 hour drive each way…in other words entire days would be wiped out for doing anything else.  The first gave me steroid shots.  Around my fourth visit, they decided to have me apply medical grade honey to sore.  It’s supposed to draw out fluid.  I just kind of looked at the nurse in amazement.  Really?  Honey?  And I want to know who in the world thought “he, let’s stick honey on this open wound!”  And it literally smells like something you would eat.  At any rate, the honey really helped.  My pyoderma is about closed up, although I have tons of silver/bluish areas on my skin (that color is another indication of pyoderma).  I’m hoping that isn’t a big deal and hoping to soon make my last visit to Cleveland in awhile!

Exercise – Oh my good friend exercise.  I really tried to start exercising again.  As soon as I was cleared for activity I was mentally ready to go!  Unfortunately my body disagreed.  I tried to lift weights and do inclined treadmill workouts.  Unfortunately this was around the time the arthritis started to kick in and I think that exercise aggravated the pain and inflammation.  So I had to back off for awhile.  Since I had been feeling quite a bit better with the Humira injections, I’ve reintroduced physical activity this week.  So far I took a two mile walk, did a weight training session, and an inclined treadmill workout.  And today I really hurt again😦.  But not as badly as I did before.  I might be experiencing Pred withdrawal effects.  At any rate, I will plan to workout and take the next day off for awhile.  I hope I continue to do better from here.

Posted by: activeguts | October 11, 2012

Colectomy Recovery Weeks 4 and 5

My surgery recovery is going GREAT!  No pain, stoma works (erratically, but that’s a young stoma for you), and I feel better than I did before surgery.  There are other things that are going not so great.  I’m having Prednisone withdrawal problems and I am now the new owner of yet ANOTHER auto-immune problem.

I had been on Prednisone off and on for about 10 moths.  Mostly on.  I spent four months at relatively high doses.  I took it to reduce inflammation in my intestines.  It does that very well.  However, long term Prednisone usage can cause high BP, high blood sugar, osteoporosis, weight gain, facial swelling, and delicate skin (among a ton of other problems).  The sever side effects together can be captured under the umbrella of Cushing’s Syndrome.   Unfortunately, taking such high doses can make your body lazy at making it’s own corticosteroids (especially cortisol).    You end up in withdrawal.   That’s why it is important to not go “cold turkey” when you’ve been on steroids for awhile.

Your body makes the equivalent of 5-8 mg of the Prednisone per day.  I started having issues around 10mg – horrible body aches and pains.  I was also exhausted.  I went through 10 days feeling like I had the flu.  Also, every day it felt like I woke up with a different joint injury.  One day I couldn’t close my hands all the way without pain.  Another day my elbows would hurt.  It took concentration to shampoo my hair!  My shins always hurt and my feet felt like I was walking on rocks all the time.  I called my surgeon’s office and they had me contact my GI (GI’s deal with Prednisone tpaering a bit more often) for a better taper schedule.  I was put back up to 12.5 mg.  And instead of tapering by 5 mg every 10 days I’m tapering at 2.5 mg every 10 days.  That means I will be on that horrible stuff longer, but I am functional again!  I just hope I continue to be functional when I taper back down to 10mg in a few days!

In addition to the Prednisone problems, I also had a sore develop below my stoma.  It started as a little red bubble looking thing.  It then grew into an ulcer.  I went to a WOCN (Wound, Ostomy, & Continence Nurse).  They specialize in stomas among other things.  The ostomy nurses deal with ostomies constantly.  They are experts at dealing with stomas.  They see all of the unusual stoma problems, stoma shapes, skin irritation, and ulcers. I had the ulcer silver nitrated (aka burned).  A week later, the ulcer was bigger.  I again went back to another WOCN and they silver nitrated it again.  Over the next week, I noticed that it was burning and hurting lots more.  In addition, an area away from the ulcer was hurting.  About a week after that last appointment, I changing my stoma appliances and noticed that the sore looked a bit..disturbing.  Ok, it freaked me out.  It had grey and purple edges.  It was also oozing quite a bit.  I rubbed it the wrong way and it started leaking quite a bit of blood.  I took a bunch of pictures.  I compared them to pictures I had taken a few days before.  I could visually see how it had gotten much bigger.  Since I was changing my ostomy appliance at night, I ended up emailing the pictures and an email to the nurse at 1:00 in the morning!

I received a call at 9:00 a.m and they thought I needed to get it looked at that day.  So off to Cleveland I went (7 hour round trip).  I ended up having two ostomy nurses, the surgeon’s nurse, and a surgical fellow looking at it.  I felt like a science display!  Actually, the surgical fellow was there to give a second opinion about whether they would need to do any skin cutting.

During the appointment, the first ostomy nurse and the other nurse were looking at my stomach going “does that look like pyoderma to you”… “yeah, look at the yellow along the edges.”  Now, I had looked up various peristomal sores before this appointment and pyoderma showed up as one of those things that you do NOT want to deal with.  It’s hard to get rid of and painful!  It also makes pouching difficult.  They asked me “didn’t this hurt quite a bit?”  I told them yes, but I had no idea what in the world goes on with an ostomy in general!  I thought maybe an ulcer was supposed to hurt that badly?  Plus, I thought I had just pinched the skin strangely in the other area.

Well, the two WOCN’s, the surgeon’s nurse and the fellow all agreed that I had Pyoderma Gangrenosum.  Pyoderma Gangrenosum occurs when the body attacks the skin. My PD looks very similar to this (Warning, ouchy picture appears.  The little red circular thing on the right is the Stoma, the rest of it is the sore.). PD sometimes shows up with IBD’ers, generally on the legs.  I was strange in that I developed it while already on steroids.  One of the treatments is oral steroids.  One source put the incidence rate at 3% of UC’ers. In general, the disease affects 1 out of every 100,000 people (keep in mind that UC affects 1 out of 1,00 people -my mom told me that I need to play the lottery).  Fifty percent of the people who get PD already have another auto-immune condition.  Another source said that 0.6% of ostomates get it.  I just have to say that I was glad I kept going back to the doctor and that they have some highly experienced people in Cleveland.  The sore was only about the size of a quarter – it can get soo much bigger.

The treatment is fun!  I first got some pain killers injected directly into the wound.  Then they injected steroids directly into the wound.  Those stung!  I also got a much softer ostomy system (along with some powder, some seaweed called Acquacell, and a barrier).  I have to say, after the first treatment and the new ostomy system I feel sooo much better.  I’ll have to return to Cleveland every two weeks for treatment until the PD is healed.

So, overall right now I feel pretty good.  These two small rough patches have been handled (and they are “small” compared to some of the issues I could face).  I feel like I’m once again returning to a somewhat normal life.

Posted by: activeguts | September 24, 2012

Thanks Mom and Dad!

I would be remiss if I didn’t extend a special “Thank You” to my awesome parents.  They stayed with me in Cleveland during my entire stay at the Clinic.  They had lots of supplies (soup, crackers, etc.) ready for me once I was released.  Then my mom came home to stay with me for a couple of weeks.  She took care of all of the small day to day things that can give somebody problems post op.  She fed my cats, cooked meals for me, went grocery shopping, cleaned, and all that other stuff.  My dad had to work and wasn’t able to stay with me, but he had to take over my mom’s responsibilities at their home!  This included the normal day to day cooking as well as taking care of other family members that my mom generally takes care of.  She wouldn’t have been able to stay with me if he hadn’t covered those responsibilities.  My recovery would not have gone as smoothly without them!

Posted by: activeguts | September 24, 2012

My first real post-op excursion!

This weekend I went on my first “real” post-op excursion.  I have been gong on small trips, like to the grocery store, doctor’s office, Target, Starbucks, short walks, etc. – but hadn’t been on any trips of note. This weekend I went to a taekwondo tournament to go hang out with some friends!

I have done taekwondo for 12 years (well, minus two years for UC sickness).  I really miss the workouts and the people.  There are occasionally regional and national events.  The national events draw people from all over the country and this national tournament and national testing brought everyone only an hour away from me! I’ve been hanging out with these people for years.  They are a great group of people.  Unfortunately I’ve been too sick to attend the past several events.  I even had my plane tickets bought for an event in January and was just too sick to attend. Fortunately my mom was still staying with me so she was able to drive me down.

A typical national event weekend stars on Friday. First is national testing (3rd degree black belts and above test for their next rank).   Normally I would step in to spar those testing or act as the center to make sure two sparrers don’t run into others.  After that, there’s the high rank tournament competitions.  Normally I would get to compete.  After that, people go find food.  The next day is the rest of the tournament.  Normally I get to judge several rings.   It’s fun to watch the little kids compete!  I didn’t think I had it in me to attend both days.  I just wanted to walk around and say high to people and hang out.  I decided to attend Saturday.  I caught the end of the tournament, got to talk to lots of people.  Then I got to hang out at dinner with people from two of the schools I attend.  There were also some late night celebrations for those who had passed testing, but unfortunately I ran out of energy L.

Overall, it was a very successful trip.  Steward behaved (no leaks) and I got to see many of the people I wanted to see.  We were gone for about 8 hours and I wasn’t exhausted on Sunday (today, Monday is a different story though).  I can’t wait to get back to working out and being able to attend these events.  Unfortunately I probably won’t be able to spar for quite awhile but it will be good to just get back into an activity I love.

Posted by: activeguts | September 16, 2012

Meet Stewart the Stoma, and he’s being difficult

I’ve decided that my Stoma’s name is Stewart.  My mom insists on calling it “Stewie” – but that reminds me too much of Family Guy.  People do have a tendency to name their Stomas.  I think sometimes it’s partly to put an identity to a “foreign” part of our body.  You don’t control your stoma.  It outputs when it wants, it “talks” when it wants.  It sometimes makes really loud farty noises.  Other people name their Stoma’s from affection.  A good number of individuals might be dead without the bad section of their body removed and a stoma put in place.  I’ve heard people call their Stomas some quite cute names including Squirtle (a woman’s child named her stoma after the Pokemon character), Bubbles (quite accurate), and Lily.

End Ileostomy

An end Ileostomy (not mine). Probably slightly larger than a quarter.

I’m not sure where the name Stewart came from.  I think I like the alliteration (Stewart the Stoma).  Plus Steward seems like such a prime and proper name and a gurgling stoma, well, it’s not prime and proper!

I’m still trying to figure out what I’m going to do when I go back to work and Steward decides to “talk” loudly during a meeting.  I don’t mind people knowing about it.  I’ll share with my coworkers that are around me a lot and we have a small office anyway. That if Steward decides to make an announcement, I can just proclaim “Don’t mind Stewart.”  But I’m thinking it’s not quite proper to share its presence with customers during a meeting.  “Oh, please excuse the random noises coming from me.  I’m not suffering from indigestion; it’s just my Stoma.  It likes to make noises but you shouldn’t notice anything else.”  I guess I’ll just come up with several courses of action and decide based on the mood of the meeting and who I’m meeting with.

On another random note, Stoma’s can be very fickle and Stewart is no exception.  A stoma is a section of the intestines (in my case, the small intestines) that sticks out of your abdomen.  The small intestine is turned inside out for a small portion, kind of like a turtleneck – and that’s the portion that sticks out of the body.  I’ve had Stewart for about 2.5 weeks.  I’m getting used to it now, but it keeps changing shape.  I was told the stoma would shrink and post-operative swelling goes down; and my stoma has definitely shrunk.  Unfortunately, Stewart has sunken into my abdomen as well.

 

Ileostomy with Bag

A women with an ileostomy pouch. Her ileostomy sits about where mine sits. The ostomy is most likely the slight bulge in the middle of the upper third of the bag.

Pouching is foreign to anyone who doesn’t have an ostomy and isn’t in the medical field.  In fact, it’s still foreign to me for the most part.  A person can have a one piece or two-piece pouching system.  A two-piece pouching system consists of a skin barrier/ wafer and a pouch.  The wafer has an adhesive substance on one side of a flexible plastic-like circle.  You cute the center out of the barrier to fit the size of your stoma and then put it on your skin like a band-aid.  The pouch attaches to the wafer with a Tupperware like seal.  A one-piece system is very similar, except it is already connected.  With a two-piece, I can leave the wafer attached to my skin and change the bag whenever I want.  With a one-piece system, I would have to change the entire system.   On first instinct one may think, “Change the whole thing! “  But unfortunately it can be a long process.   I have a page and a half instruction sheet on how to deal with changing my ostomy system.  First I have to gather everything (wafer, pouch, scissor, trashbag, adhesive remover, soapy paper towels, dry paper towels, and paste).  I have to pull off the old bag, use the adhesive remover to help pull off the old barrier, measure the stoma (this would stop after six months as the stoma would have stopped changing shape), cut the barrier to the appropriate size, attach the barrier to the pouch, put stoma adhesive on the barrier, wash the area around  the stoma with the soapy towels, “rinse” the area around the stoma with the wet towels, then make sure my skin is dry.   Then I get to apply to system, making sure to place the barrier in the right spot.  Then I get to lay down for 10 minutes with my hand on the stoma to make the adhesive “melt” and attach to the skin better.  You are supposed to change the system twice a week, although others go a week.  Changing the barrier too much can irritate your skin.  Changing the barrier too little can also irritate your skin!  So sometimes changing the bag only is the easiest thing.

Holister Wafer

Hollister Wafer – two part system. Both skin side (white and beige) and pouch side (beige) shown. The hard looking ring is the “tupperware-like” seal. The material under the white is like a band-aid and the rest of the that side is sticky. The hole in the middle would be cut to stoma size. In my case, paste is also applied around the hole to help the wafer stick better.

Hollister Bag

Back of a Hollister two-piece bag. You can see the “tupperware” ring again. The things sticking out the sides are spots where you can attach and ostomy belt to help keep the system closed. This is very similar to my bag, except my bag as a “tail” at the bottom (like in the image above) that opens up so I can dump the bag’s contents.

Pouching systems can get much more complex.  I just have the basic (wafer, bag, adhesive).  Sometimes people also require physical barriers, chemical barriers, powders, and moldable seals.  There are also different types of barriers.  I currently use flat barriers.  But it seems that is not working for me anymore.  As my Steward is now flush with my skin and no longer sticking out, I will likely need a slightly convex or a convex barrier that will “push” my stoma away from the skin.  While the stoma itself is not subject to irritation from my output, the skin around the stoma is still normal skin.  It can be damaged by the output.   Fortunately, people aren’t left to fend for themselves to navigate the multiple companies and multiple products out there.  There are individuals called “Ostomy” nurses who have chosen to specialize in ostomy care.  They are WOCN certified (I believe it stands for Wound, Ostomy, and Continence Nurse).  Not only can it difficult to fit the bag – the skin around a stoma can easily become infected and irritated.  Fortunately there is an Ostomy care center near me and I have a appointment next week.  I just hope my pouch system keeps holding for a day or so after each change in the meantime.

Posted by: activeguts | September 12, 2012

Thanks All!

Image

I just want to say “Thank You!” to everyone who visited, posted, sent flowers, gave gifts, checked on my progress, commented, prayed for me, sent well wishes, or otherwise thought of me.  I can’t tell you how much it means to me!

Posted by: activeguts | September 11, 2012

Week one at home

Long time no post!  It’s been about a week since I’ve been home.  It’s been interesting.  I started out feeling great on Tuesday of last week but I noticed that my stoma was outputting.  It’s supposed to working constantly and it hadn’t really done anything for several hours.  My mom and I were driving home so I don’t know if it was lack of moving, being cramped up, or what.  It took use 5 hours to make the 3 hour drive because of stops to get out and move around!  Wednesday I was incredibly nauseous and that continued into Thursday.  It made me not want to eat or drink anything!  And my taste buds are off from anesthesia (I’m guessing) – everything tastes too sweet.  Certain things just shouldn’t be sweet!  I also had some slight abdominal pain.  I finally called my surgeon’s office and they sent me to the emergency room.  They were worried that I had a blockage developing.  This can happen when the small intestines stop operating or when food literally gets stuck in the small intestines.  One CAT scan and six hours later, I found out that I have a fat hernia, which is nothing to worry about, and no blockages!  I had to actually ask what a hernia was.  Of course I had heard of but it’s just one of those terms I never gave much though about.  In case anybody wants to know, a hernia is when some substances breaks through a hole in the abdominal fascia.  If it’s intestines, that’s bad because the blood supply can be cut off.  Fat is not as much of a concern.  I also found out what an intestinal blockage would like like on a CAT scan.  Apparently the small intestines collapse at the point after the blockage occurs.  This would happen even if you had food or if you didn’t have food.  I was worried as I had only eaten one piece of bread that day.  When I was in the ER at the hospital I got Zofran (anti-nausea drug) and a bag if IV fluids.  I got juiced!  I was very glad to get IV fluids as dehydration is an issue with stomas.  I think only 75% of water absorption happens in the small intestine.  The rest happens in the colon, which I don’t have any more.  Several people suggested that the pain meds were causing nausea.  I was only taking the medication at night so I wasn’t convinced they were the problem.  I didn’t take them one night and the  next day, I was barely nauseous.  I’m not sure if the pills were causing problems or if the nausea was just part of general recovery.

And I learned an important pro-tip…do not go to the ER on a Friday.  Everyone comes out of the woodwork!!  I would much rather be a non-priority patient and wait two hours instead of being seen immediately, however I would also like to go to the ER when it’s not jam packed and not wait two hours😉.

I won’t lie.  It was a bit of a rough week, mainly from the nausea and feeling so weak.  With that, I have been thinking alot about my situation.  Pain/ discomfort (to a point) I can deal with.  But I cannot stand feeling so weak.  I had thought about surgery for quite awhile before actually having it.  However now I’m actually living with having a stoma (albeit temporary) and the ramifications of my life being changed.  I have to worry about the bag disconnecting, leaking, being gassed up, and having to empty it about 8 times a day (and at least once at night).  Hopefully in the long run my life will not be changed that much, but it will be different.  And whatever happens, it will likely be better than having uncontrolled UC.    And, as mentioned in a previous post, even the surgeons said my colon was pretty messed up and I was pretty sick.   Even with all of that, I’m still feeling some mourning.  I don’t regret having surgery as I believe it was the best option for me, however I do regret having to have to make that decision in the first place.  I think the main driver of those feelings has been the nausea and feeling so weak.  The past few days I have been feeling alot stronger (probably because I’ve been eating more) and feeling stronger is bringing up my spirits.

So right now I’m doing relatively well.  Seeing me somewhere out there in the world, you wouldn’t know I had major surgery ten days ago.  I just walk a bit too slowly.  I also sleep alot.  I typically go to bed a bit too late, sleep until 10, eat, then go back to sleep.  I’m still on a soft diet, although I’m eating more solid foods now.  Today I had some grilled chicken!  By the end of the week, I want some JETs pizza (local pizza chain)🙂.  I can only eat cheese pizza as most toppings are on my nono list.  And I also have that weird taste problem which makes everything taste a bit sweet.  It so weird!  So everything is progressing as expected (even with the short blockage testing) and I’m doing pretty well!

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