Recently in ulcerative colitis & stoma Category

It was two years ago today that I anxiously waited in my hospital bed to be taken to the OR for my second, corrective ileostomy surgery. The first operation on May 18th resulted in a complication that couldn't be immediately fixed. A kink developed at the end of my ileostomy, about two inches into my intestine, that prevented any contents to exit. I spent from May through into July going in and out of the hospitals, hoping for some relief. The surgeon said there was a chance the kink would work itself out. Before it did, I lived in a state of constant pain, almost endless vomitting, and kept going because what else was there to do?

Then one day in July the ostomy started working. Only for it to stop working abruptly about a month later. When it stopped working the rest of my body stopped working, too. Everything shut down. Much of what happened at that time is like a foggy dream. I know I was in the local hospital where they did more damage to me than good. I was then released from their "care" to go back to my surgeon. I apparently was so compromised that they couldn't operate on me right away. I needed to be stabilized which took about 10 days to rehydrate my body. Part of the rehydration plan was to give me two units of blood. My left lung also needed to be re-inflated because the first hospital managed to puncture it. My blood pressure was extremely low and my heart rate was incredibly high. Operating on me in that state would have been highly risky and so since I wasn't technically near death, just bouncing on the periphery, getting me bolstered was the best plan.

Once I had gotten some fluids back into my system then the date was scheduled. I recall seeing on TV what was happening in New Orleans and thinking in my Dilaudid haze that not enough was being done to get those people out of there. Why was nothing being done?

When they came to take me for surgery prep, I remember them going through the process of start the epidural. Then after that everything is a little fuzzy because they infused the "milk of amnesia", that milky medicine that causes immediate loss of consciousness.

Then when they woke me up they were sitting me up, telling me the epidural didn't work and they were going to remove the catheter! Being moved with a freshly sliced abdomen was not what I had in mind! And without the epidural to numb the incision and recent tinkering of my innards, I felt all of the pain! Since I had been living on regular infusion of Dilaudid, the amount they were giving me was not enough to touch the pain. I couldn't be given more without causing my respiratory function to become dangerously compromised. I was just going to have to endure the pain. What?!?! No way! But somehow I did. I'm pretty sure that I know what the pain of being dis-emboweled feels like.

It's now two years later and me and Ian-Sophia, my stoma, are doing very fine. I have no more pain in my rectum, or in any part of my bowels. I sleep most of the time a solid 7-8 hours of sleep. No more numerous trips to the bathroom during the night. My stoma has its own daily routine and I no longer have leaking bags or ruptured wafers while out in public. Once in awhile, if I get laxed about changing the bag, I'll awake to a "popped" wafer and have to deal with some leaks. I haven't had any problems while out and about in public since January, and that incident came about due to a bad batch of ostomy paste.

At last my body is doing well. I actually gain weight, much to my chagrin. I have taken to bicycling again--not as much as I should be doing--and I handle it well, as long as I have a good supply of water with me.

So despite the events of two years ago in which I sometimes have PTSD-like memory flashbacks, I'm thankful for the difference and improvements the ileostomy has made in my life.

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 23rd

I'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*