I've been working on giving a presentation and discussion at Module 4 about living with an ostomy and having ulcerative colitis. I figured that my classmates, soon to be future marriage and family therapists, would find candid talk about having an ostomy very valuable. Here's the flyer that I created for my presentation/discussion:
View the flyer.
In my basic research for my discussion I learned that the ostomy manufacturers in the United States provide very little "quality of life" information on their sites. What I find particular intriguing is how the Hollister UK site offered candid Love and Sex information. Their information address homosexuality, as well as the potential for erectile dysfunction. These topics are very taboo and I applaud the UK site for "letting it out of the bag" that there are more considerations to living with an ostomy than embarrassing leaks in public!
I also found out that there is an annual award given to an ostomate or person with CD or UC called The Great Comebacks Award. The application is pretty length: they want specific information, and reasons why the nominee qualifies for the award. I'll put completing the nominee application on my list of things to do along with everything else.
O.k. I'll ask about the sex. Is there any position you have to avoid? Have you found any creative way to get around any position limitation that has turned out to be even more fun? :) ~ Joy
There are a few things about sex that are minor details. Such as, I empty my bag just before sex because a full bag is not very sexy. Plus a full bag could snap off or get in the way, and I don't want to think about having a full bag empty its contents during an intimate moment.
Positions have actually become unlimited since my pucker has been shut down. OK, that has been poorly worded, but prior to it becoming a dead end, I was having a lot of internal pain and external abscesses, so only a few positions felt comfortable. With all of that being cleared up, I'm more free ;-)
I can't speak on this from experience, but apparently men can experience some sexual dysfunction as a result of the surgeries, most involving erectile issues.
The bag does make noise during sex, an annoying rustling sound. I'm sure I could reduce or eliminate the noise by wearing a bag cover which comes in satin lace designs for intimate moments. I'm too lazy or cheap or both to acquire a bag cover. Pooky and I don't stare at my bag when I'm naked so it hasn't been an issue between us. :-)
I solicited your questions about what you'd like to know in regarding to what it is like to have an ileostomy, or something like that. I'm still interested in receiving your questions, so post in the comments or send them to me via e-mail.
The following questions come from Noricum, Sock Maven and Shrone Extraordinaire.
1. Do you still have an, um, butthole?
The simple answer is not so simple. I still have what I call "my pucker". My anus is still there, only it doesn't go anywhere. I still have enough muscle left to flex the sphinter. Now, why the surgeon left my pucker behind is a mystery to me. When I talked to other ostomates I was told by one person that she was left "smooth like a Barbie doll" and referred to herself as having a "Barbie butt".
2. How much of your intestines did they remove? Does that affect the shape of your stomach?
All of my colon has been removed. A portion of my ileum (which is the last of the three segments of the small intestine) has also been removed. I do not know how much of my ileum has been removed; however, I do know that the doctor had to remove 8-10 inches during my second surgery of last year.
The shape of my stomach hasn't changed due to less guts inside, but it has changed in shape because I have gained about 15 pounds since my surgery.
3. How does your bag attach? Is there something at the opening for it to attach to? What's the interface between "you" and the bag related bits?
My bag is a two piece system. A flange or wafer is glued to my body with a special ostomy paste. The bag then snaps and locks onto the wafer. The bag has a "tail" which is opened up to allow the bag to drain. I use a bag that has a Velcro closure to make sure it stays closed. The old-fashioned kind of bag used a clip that didn't feel very secure.
The flange/wafer has its own sticky adhesive, but this isn't a very reliable method of attachment. I prep my skin with a protective barrier which is a mild adhesive and kind of like a liquid bandage. The stoma paste helps to protect my skin around the stoma while also sealing the wafer to my body.
4. What are the psychological issues with having your body rearranged like that? How do you feel?
For awhile I was concerned that I wouldn't be able to wear the style of clothing that I prefer, but much of that was solved when I made sure my stoma was placed lower than my previous ones from 1990 and 1995. This made all the difference. I do get a little self-conscious if my bag gets too full in public as I think all eyes are on me, and I have a concern about my bag popping off if I let it get too full (which has happened at home).
Most of the time, about 99%, I don't feel different, and in fact I feel better since having the bag as I'm no longer in constant rectal pain, having to run to the bathroom, or having those issues I dealt with while I still had a functional "pucker". If I eat too much I do feel more bloated than usual and still am not used to the sudden output.
5. Do you think people who haven't been told can tell you have an ileostomy? How do you feel about that?
My assumption is that people don't know. I haven't told anyone at my internship site, just because it hasn't been relevant. I've shared my story at graduate school, just because the environment is right, and sharing it was appropriate and had meaning for me and my classmates.
If people found out about it, I would be open to explaining and answering their questions. I consider myself an ambassador of the bag, as I think it is important to let people know that life isn't all that unusual to wear a bag.
6. How does it affect absorption of nutrients, and whatever else it is that your gut does?
I was concerned at first that I wouldn't get enough nutrition, but appaently I am since I have maintained my weight of over 140 since earlier this year, and I've crept up to 145 and above over the last couple of months. I can dehydrate more easily, so I make sure I drink fluids. My electrolytes can unbalance easily, so I salt just about everything and sometimes take a potassium supplement. I take vitamins just to make sure I get the important stuff as my diet is pretty limited to processed foods, meat, and easily digested stuff.
Vegetables and fruits in the raw are impossible for me to digest. Dried fruits are lethal as they can cause a blockage. I can eat salad in a small amount, along with corn, but I really need to make sure I limit these as they can stop up my bowels. Cooked veggies in a soup pass through without problems--the more cooked the better I am at processing them. Nuts can be rough, so I limit how much I eat of those, and shredded coconut can bunch up.
This might be sharing too much information, but what comes out of me is all liquid. There are times where the liquid is thicker, like if I eat a lot of potato, cheese, or bread. The thickness is like a tomato puree. The only time I have solid particles is when I eat something like corn, carrot, or nuts—all items that haven't been broken down through digestion.
7. What are the most annoying things about having a bag?
There is an itch that can develop around the stoma that can't be scratched. I can rub it gently, but it isn't something that should be dug into as it would losen the wafer.
The odor is annoying, especially if my bag is getting old, just before I need to change it. I'm the only one who can smell it and it isn't pretty.
Having leaks are annoying, especially when I wake up to them. Having to change my bag in public is the most annoying and I make sure my bag is fully functional so I don't need to do the emergency change in a bathroom stall somewhere.
8. Do people ask annoying/stupid questions? (Are any of these annoying/stupid?)
I haven't been asked any stupid/annoying questions yet. Most people who have asked pose very intelligent, yet extremely curious questions. Sex and body image are commonly asked questions.
9. Do people make annoying/stupid assumptions?
Not that I've encountered—exactly. I had to prove to my school that I was healthy enough and capable of handling my internship, school, and life in general as they had concerns my health wasn't stable. I'm not sure if that was because of my surgical complications or because they assumed having an ileostomy meant I should become a recluse. They weren't too happy with my dietary restrictions and wanted to make it out to be that I wasn't totally healthy as my doctor claimed me to be.
I do have certain health risks that I can manage, such as avoiding those foods that cause bowel obstructions. I make sure I keep my skin clean and attend to irritations immediately so they don't become infected or worsen. I make sure I keep myself hydrated and balance my electrolytes, and so on.
10. What effect has having an ileostomy had on your life? (Health, school, etc.)
I don't spend as much time on the toilet. Draining my pouch is like going pee. My bag typically fills up after meals, so I empty it no less than 3 times per day, but I don't know what my maximum is.
I change my bag every 3-4 days. What this means is I take off wafer and bag, remove all adhesives and clean my skin around the stoma. I then do my routine inspection to make sure everything looks as it should look. I then apply a fresh bag. Changing my bag takes about 15 minutes or less, depending on if my stoma is in a leaky mood.
My biggest physical limitation now is overcoming the 3 months of being bed ridden due to the surgical complications of last year and how that took a toll on my muscles and endurance. Little by little I am coming back to being active, regaining my lost strength. It's been a slow but steady process of doing a little more each day, or at least trying to.
There are a few things that I have to be aware of if I am going out for awhile or away from home. I have to make sure I take enough supplies with me. I've gotten a good routine established with that and have felt comfortable with changing my bag while staying in a hotel room. It's not the same set-up I have at home, but it works well for me.
I was annoyed when I recently flew back to Pennsylvania, how the Seattle airport was super friendly and accommodating of my ostomy supplies, and then Philadelphia was totally by the rules and wasn't going to allow any liquids. I've since learned I need to have my doctor write that I medically require my stuff—which to me is such a violation of my civil rights and freedoms that I have to share and prove my medical condition with total strangers—and this could easily turn into a rant about all of that, so I'll just leave it at that.
Anyone else have questions? What do you want to know about sex and ostomies?
The perfect accompaniment to a grilled steak is a fresh ear of corn. Ah, sweet, succulent, buttery-salty corn on the cob. The two ears I ate last night may as well have been served to me by the Grim Reaper. Me, thinking only of the deliciousness of the corn ate two seemingly innocent ears. I should have had just one and had the second the next day, but I thought otherwise as my brain had been misguided by my tastebuds.
About 10 o'clock last night all hell broke loose. Pain, excessive watery output, and then the nausea. Oh shit, I thought literally and figuratively, I've got a blockage! Why did I eat so much corn?
The nausea continued to surge until I brought up a good portion of my diner. I felt a type of sweet relief, but I was still plagued by a "trapped" feeling inside of my gut. I was hoping it would come out through my stoma and not take the top exit out.
As I lay in a partial sleep I could feel something shift inside and the pain and "stuck" feeling ended and I drifted off into a much needed restorative sleep. I awoke this morning with the remaining offensive corn discharged.
I informed Pooky that he is not to let me eat more than one ear of corn, and in fact, he should wrestle me to the ground and remove any corn that I might be holding in my hands.
Though I have to wonder if the rest stress I've been experiencing with school-related issues could have contributed to my temporary stopping up? I think I've eaten two ears of corn before and they went through without troubles, but stress can really upset the digestive process.
Last night's episode was a rapid way to lose some weight. I dropped 5 pounds in less than 12 hours. I think it was all water loss. I feel very parched and have decided to salt myself to death and drink as much water as possible.
I still love corn though. I'd eat some right now, as strange as that may sound.
Perfect Score!
The winner of the Ostomy Anniversary Quiz/Contest is Stacey! She answered them all correctly. She chose to receive a $25 gift certificate to Knitpicks.com.
Honorable Mentions
Trish had the second best score with missing only one question. Joy had the third best score with missing only two. They will receive a consolation mystery surprise!The Answers
1. 15 years ago 2. Ian Sophia 3. 1.125 inches 4. A colostomy is a stoma coming off the colon; an ileostomy is a stoma coming off of the ileum 5. ulcerative colitis 6. 1,000,000 7. Mt. St. Helens has a major eruption 8. Longview, Washington 9. Kittens were rescued from the window well 10. February 23rdI'd like to revist if I may my entry about how I surmise I might have a twinge of PTSD. What makes me feel that I may is that one of the key symptoms is a persistent feeling of helplessness. Bingo! I'd call it more of a residual feeling, as the memories I have from this past summer are nothing but feeling helpless. Rationale: If you can't get up to get yourself a drink or go to the bathroom, that's helplessness. Not being able to get dressed, etc. You get the picture.
While I am able to do these tasks now, I have this "fear" that everything will go south and I'll wind up back on the futon wishing that I was anywhere, anywhen but in that moment. I think that is where a lot of my anxiety resides is in the "what-if-I-relapse-and-I'm-helpless-again" thoughts that I try to beat away with a stick, yet they come around anyhow. Yeah, I know, don't dwell on what isn't, and live in the NOW, but I feel so hesitant to pick up the reigns of life when I feel such uncertainty. As demonstrated by the immense unstanding and caring attitude of my faculty (NOT!!), I fear that if I relapse they will just ask me not to continue with the program. There was one administrator who got very angry at me because I had cost the university money due to my cancelling two modules (as if I had control). In retrospect I should have said, "I'm sure the university can write that off on their taxes, or have some other form of absorbing the loss. I really don't sympathize with you considering my husband took off three weeks of work without pay and that set us back considerably."
Noricum reminded me of something I read in my introductory packet from the ostomates' society newsletter, that technically I am an amputee. They call it "intestinal amputee" to be precise. Only I won't have phantom limb pains. I have experienced a phantom anal pain recently in which I swear I could actually use that orifice of exit, but it passed in less than 30 seconds. It was weird while it lasted.
I decided to resume the gabapentin (Neurontin) as it can act as a mood leveler. It would be nice to have a more even keel in my head. It may also help with some of my lingering nerve pain. If only I could receive a little talk therapy to boot, but that is not as easy to acquire since funding and availability of mental health care is scarce where I live. I'm not sure what good talking about it would do as blogging is just as good, and all a therapist/counselor will do is reassure me that others go through similar feelings in similar situations, and I just need to gain confidence and let time pass.
What I really want is a freakin' magic wand that will restore my energy to 100%, allowing me to get back into the full swing of life. No pill or psychological therapy delivers that. I will have to do it the old-fashioned way, and earn it.
Lori got out of surgery late last night and I stayed the night with her. When I left this morning she was sleeping. The doctor was pleased with the results. Hopely Lori will be back to posting in a week or so. Continue the emails, she reads them all.
For those who have been wondering where Lori is, she was hospitalized again. She went in on August 19th, although she was pretty sick for about a week leading up to it. She is having surgery today. Hopefully this will finally correct the problem. Lori asked that I post to let everyone know what was going on. She is in good spirits and actually relieved that this should fix things for good. The hospital she is staying at has an email service. I haven't used it so I'm not sure exactly how it works. The hospital is St. John's Medical Center in Longview Washington. It's Lori Carlson in room 606. She goes in to surgery at 4pm, but I'll be there all afternoon to get messages.
Pookie
Just a few days ago I was swooing about how nice it is now to sleep through the night without having to go to the bathroom 3 or 4 times. I am still enjoying this immensely, but this morning...I kind of wish I had some alarm system to indicate that my bag has sprung a leak!
What happens is during the night the gas pressure builds up in the bag and the seal breaks so I leak from the wafer. It's not that bad; I don't wake in a fecal lake. So far everything has stayed in the bag and it is more like a seep than a leak. Nonetheless I awoke with seepage and had to quickly change the wafer and bag and grabbed a shower to make sure I was totally cleaned up.
Now here's a bit of an anatomy lesson. The stoma almost incessantly dribbles, but there are periods where nothing comes out. In time I will learn when my stoma is more active versus less active, read: poo coming out versus not. Well this morning it was an active time and changing the bag during an active moment is not how I had wanted to start my day off. It quickly becomes messy.
Yet, despite the soiled towels and clothing, I have to sing praise because I don't have rectal pain, I can sleep 10 hours without waking up, and I no longer take antibiotics! *dance of joy*
I had a follow-up appointment with the surgeon today. Being that I've gone more than a week without need of the catheter or anti-spasmodic medicine, and that my stoma has shrunk in diameter, he said I'm on the road of recovery and just need to concentrate on getting my weight back to where it was.
Yes, yesterday when I went to change my wafer I re-measured the diameter of my stoma and it has gone down to 1¼" which it was around 1½" the last time I measured it. In fact, I could have gone a little smaller but didn't want to choke the base of the stoma (which you can do) so I opted for the slightly larger opening. What this means is soon I can drop down in wafer size!
He looked at the big lump on my arm. The one that keeps throbbing and swelling that was caused by an IV site all the way back from July 4th. When he saw it he said, "Are you sure that isn't a spider bite?" and I said no, that's where an IV was. He was astounded it wasn't a spider bite, but he said, "That's going to have to be lanced." Which I wasn't surprised because it felt like it needed to be drained.
Let's just say that they inject numbing medicine in the skin sort of like they tell you that your seat is a floatation device in case of an emergency when you fly on a plane. He said that the lump had a nice puss pocket inside of it actually doing a bit subcutaneously and that the wound will remain open so it can drain and my mission is to squeeze it while in the shower to make sure all hidden puss pockets expel their goodness. Just what I needed: another scar on my body.
Why is it I get to have open flesh wounds? Why can't I have something that gets stitched? I hate looking into my own meat and have to watch it slowly and painfully heal! My second ileostomy wound was an open flesh wound and I had to deal with that. I had a rectal abcess that was also large and meaty. These are not fun things to deal with.
At least my arm feels better because the pressure has been released, but there is smarting now and an increased tenderness that is different. By tomorrow I imagine it should not hurt as much and by Saturday I'm thinking all twinges should be minimal.
Spider bite indeed!
Dr. S said I could come back in a month if necessary, but if my health is good I can skip the appointment. He was a bit concerned about my stoma sticking out so much, saying I shouldn't have prolapsing because I scarred so much, but he said to keep an eye on it. If my stoma sticks out more (he indicated the stoma can push out 6 inches!) then he might need to go and trim it back. Right now it just flops over and I can push it up and it puckers up. It's not a problem at this time, but I will be keeping watch on it. The stoma looks like a clam neck poking out. Not a happy visual because I'm not fond of clams in their natural state!
Otherwise I sleep soundly through the night! My gosh how pleasant it is to sleep solidly! This is what I wanted from the surgery: full night's sleep and no more rectal pain. I have accomplished that and more! I no longer need the antibiotics! Soon I'll be off the medications—well maybe stay on the antidepressant for a bit because that is making me feel "happy".
I figure by the end of the year I'll be where I want to be as far as stomal size, stomal output, and general stoma functioning. I will do the stoma dance of joy!
Post-Script
I was craving a pizza so much that I decided to take the risk and drive! I haven't driven since the surgery and it was WEIRD! I figured my blood level of fentanyl had to be pretty low since I hadn't put the new patch on, and I drove carefully. I did this while Pooky slept so he wouldn't give me the evil eye and say I shouldn't go. I suppose now I can drive a bit in town—definitely not up to freeway drives or long hauls, but I should be able to go do things like get my hair cut and trips to Wally World.
Last night I felt strong enough to take a shower. It had been since Tuesday that I had the ambition to get cleaned. I had a good look in the mirror at myself. I look shot to hell, don't I? Eyes sunken in and discolored. My arms show the casulties of IV's gone bad or blown when attempted to be started. The worst is the lumpy bruise on my left arm. The knot is hard and the skin scabbed over a few days after the catheter was removed. I've never have had an IV scab over like that. I am keeping watch on the lump making sure it doesn't spread, but it doesn't hurt and it is just a hard lump.
I calculated that I've lost 15% of my pre-operative weight. The last time I weighed 115 pounds I was 16 years old or so. Let's just say my body looks like a deflated balloon. I asked Pooky if the weight loss shows. He says my legs show it the most, in the calves. I feel like a withered Mr. Burns and Pooky has become my Smithers.
I won't be on the prednisone long enough for it to work its magic of rapid weight gain, and my appetite is suppressed thanks to the variety of pharmaceuticals I am taking. Losing 20 pounds over 9 weeks is not what I had in mind. I have no idea how quickly I can recover from the loss. If my stomach continues to be happy I am sure in three months or so I can be back to my starting weight.
The surgeon said I should expect "surprises and changes and many adaptations" of my stoma and gut functioning for the next 6 months. Just in time for the holidays I should be "normal" again. I can eat just about anything at the moment, and know better to avoid raw fruits and veggies and limit the amount of cooked veggies. I am not foolish enough to eat popcorn, but it doesn't even sound good to eat, and right now I'm eating what sounds good.
It's somewhat true that your body craves what it needs. I am potassium deficient and I've been craving fresh orange juice like I'm a sailor with scurvy. Turns out orange juice is loaded with potassium. I also am thirsty for good tasting water and our tap water tastes funny to me, so I'm either going to have to invest in one of those cheap filters or get some bottled water. I've lost my taste for iced tea as it doesn't taste right anymore.
Being that I've been wearing only sweat pants and pj bottoms I have no idea how regular jeans will fit me. That should prove to be interesting when I get around to trying to dress normal. I've had no motivation to do so because the only places I've gone to are the hospital, the doctor's office, the ER, or Wal-Mart, and if you go to Wal-Mart wearing your pj's, no one really notices.
I'm debating now if I should continue to heal because it was awfully spoiling to come home and find so many boxes, cards, get well sentiments, prayers for healing, small animal sacrifices, unknowable rituals performed, and a gushing outpouring of love and support from people I didn't even know knew that I existed...But I will not slip back into that miserable state of being sick because feeling almost/near normal is just too damn pleasant. I'll just have to bask and glow over the goodies I received by my wonderful bloggy friends!
Here are the kindnesses I received:
The World's Ugliest Comfortghan
A long held fear of mine of becoming seriously ill is that people would make me a comfortghan. I hate granny squares and have only seen two really aesethetically pleasing comfortghans in my life. Let's face it: making a granny square blanket only works if you coordinate it like you were making a quilt. A random assortment of squares results in chaos. I'm a Virgo. I notice these things. They disturb my sense of harmony.So when I told Deneen my darkest fear, I was hoping she'd get the hint to discourage the making of a comfortghan for me just in case the idea came up. True to her Virgo nature, she heard me, but she also suffers from the same twisted, sick sense of humor I possess and commissioned the ugliest squares on purpose with the intent of making me an "ugly-ghan".
Those willing participants (you know who you are and you shall be kindly rewarded some day very soon with Shrone gifts) who heeded the call made their very ugliest squares. You should all be proud of your hideousness because I am!
Infamous Nipple Square
Clown Hair and Loops Squares
Wicked Fur Square
The Complete Uglyghan
The Kindness of Strangers & Friends
Assorted Cards and Gifts Received
Friends have sent cards and gifts, and what has touched me is that people who only know me through Crochetville have send cards and little get well presents. I need to thank so many people and have been awful at keeping track of who has sent me what. Please contact me if you don't see your name listed as I do want to mention you!
Big hugs to: April, Melinda, Lynn G, Fiona, Lady Linoleum, Deneen, Ro, Kari, Jess, Stacey, Vicki, Kathi, Susan and my fellow classmates who signed the card, Natalie, Drew, Jolene, and whomever else I am forgetting.
Special Mention
Awesome Ostomy Bag
Ro's Wienermobile
Fiona's Gift
Some very special people have send me some very special things during my long dark tea-time of the soul. I commissioned Regina to make me either a stoma or ostomy bag to celebrate my new body, and I was willing to pay her up to $50 for her to create for me one of her awesome eyeballed creations. (I bet as she is reading this she is kicking herself for just making the ostomy bag out of kindness!)
I was thrilled beyond all Shrone emotion when I opened up the box and found my new crocheted creation filled with eyeballs! I have since determined that the eyeballs possess powers of divination, much like Norse runes. I have deemed them "orbs of unknowable wisdom" and will give free readings anyone in need of a little humorous fortune telling in their lives. You can post your burning questions in the comments or e-mail me if your question require discretion or privacy. I will do my best to read the orbs and pass on their unknowable wisdom!
I am not surprised that Ro managed to crochet a Wienermobile! After seeing her pirate hat and light saber I know that gal can crochet anything she sets her heart and mind to! She managed to put a smile on my face and a few tears in my eyes on a day that was very pain-filled.
My long-time pen pal and friend, Melinda, who is moving soon, sent me two adorable T-shirts from the show "Family Guy". I just love the Baby Stewie shirt! I'm gonna miss you, Melinda, but look forward to visiting you and Ed in your new home in Florida some day soon!
Some gals from C'Ville have come out of the wood-work that I hardly know and feel touched that they care enough to reach out to me even though we hardly know each other. Jess, Stacey, Vicki, and Fiona, are four gals that I am overwhelmed by their thoughtfulness and compassion. Jess sent me a doily book I was dying to have, Stacey send me a nice letter wishing me get-well thoughts, Vicki called me while in the hospital, and Fiona spoiled me with some bath goodies.
There is one person who I want to sing the highest praise to: Deneen. She has called me often and has been my sounding board, a dear friend who has given me a hand to hold in all of this. She has let the C'Ville group know about my status, plus her compassion and support is truly priceless.
I feel so blessed by all of you! Thank you for being there for me!