Sorry!

I know I’ve been a bit absent, but unfortunately, I haven’t been feeling well. Still not. Having trouble with pain and bleeding. The experts don’t seem to be concerned, but it looks terrible, and feels worse!

I’m being switched off the pain meds that have been helping me, back to the ones that I used to take for my colitis, which I’m concerned won’t be as effective. That sets off my anxiety like crazy. Which makes me feel worse physically. Never let anyone tell you that your psychological state doesn’t effect your physical health or vice versa!

I have an appointment with my original GI on Wednesday for the first time since we decided on surgery back in February, and he referred me to Dr. Hyman. I’m glad the appointment is soon, because I’ll feel better talking to him about the issues that have popped up since I saw Dr. Hyman. It’s like being told I was doing well made me deteriorate. I fear ending up back in the hospital with any of dozens of issues ileostomies can bring.

Of course, I could just be overly nervous and paranoid. I still feel vulnerable, I think, and I’m torn between over and under-reacting. I feel physically sick and totally neurotic, which is another irony, since I just saw my shrink yesterday, and he pronounced me doing well also!

WTH, Universe?

Feeling Down…

Reposted from http://www.inspire.com/groups/ostomy/discussion/is-it-just-me-or-do-a-lot-of-us-seem-to-be-struggling-lately/ from June 24, 2013:

It feels like a lot of us are having problems at least indirectly related to our GI issues. I’m joining the Blue Brigade myself. I’ve pushed back against it for so long, trying to stay sunny side up. I evenwent to have have my haircut for the first time since last year, and that was really nice… but my hairdresser said I’m losing a lot of hair. This without cancer (my ileostomy is UC-related) or radiation. Then I found out that the short story I was working on with my editor when I had to stop and go into the hospital got published anyway. Yay, right? Not so much, according to reviews so far. I don’t dare read any more of them in fear of feeling worse. Then last night, my “beautifully healing” ab wound split near the top and started bleeding, so we bandaged it up and have to call to see if I’m going to end up back in the ER again. My money situation has gotten so bad, I don’t even have bread, let alone the gloves and wipes I use to clean my bag.
It’s one of those one those “when it rains, it bloody well pours”. On top of just feeling generally crappy, I don’t know long I can put up with this crap.

I know I’m whinging and I have ir FAR better than some people, but do you all have pity party days? Do you indulgence them, or force yourself out of them? I normally might go for a walk or do some other physical activity to get out of my had, but today I’m trying to let my belly rest until I get the official word on what to do.

*sigh* I guess I just needed to complain. Thanks for reading. Hope you’re all well.

~~~~~

I’m feeling a little better emotionally since then, but my physical health hasn’t hotten any better. Now I’ve got this terrible rash…but you don’t need to know that, right? LOL

Be well and be at peace!

Caturday!

Even though I’m not actually going to talk about cats — I’ll spare you that, today. I had a pretty uneventful one where all the cats slept through it, except Mama (Charlotte), who spent her morning begging to go outside instead of having her late morning nap as she usually does. You know that average 16 hours a day most cats sleep? That’s kaka for Charlotte. She’s usually up for two hours in the morning, less than one around lunch time, and maybe two at night. She has dedicated her life to olympic sleeping, with occasional breaks for eating and trying to escape… to eat grass outside.

Wait, didn’t I say I wasn’t going to talk about cats? Sorry.

Been feeling better belly-wise today than I have been lately. Not sure why. Luckily, I’ve been keeping close track of everything I eat and how I feel later, so I can go back and see if there’s a pattern I’m missing. Haven’t gone food shopping, so I’m out of things that I eat a lot, like cheese, slicked turkey, hummus, and other items that could possibly cause issues. I just ate less in general, as well. However, I did drink half a pot of coffee — I thought that would make me feel worse, rather than just making my output COMPLETELY LIQUID! Which should bother me more, but actually makes it easier to change the bag lady. As long as I don’t mind the stink…

This is the kind of research I should be doing to get to know the Bag Lady better. The less pain meds I have to take, the better. Unfortunately, I was also naughty — I didn’t exercise today. Resting my abdominals? No, sir, being lazy and tired. Slept late and everything. Almost missed my favorite cartoon (we don’t have cable): Liberty’s Kids. I swear, I’ve learned more about American Revolutionary history from this little cartoon than I ever did in school. Maybe if I had gone to class more, and paid attention when I did, I wouldn’t be saying that. 😉

I think that counts as TMI… although, if I’m talking about my poop all the time, you don’t mind a little levity talking about my misspent youth and favorite TV shows, right? Say yes. 😉

Tonight is a changing night — all the apparatus comes off, cleaning up time, and put on a new one. This is the stuff that my WOCN gave me on Monday. Not familiar at all with working in this medium, so I’m a little nervous about changing it. I also don’t know if my insurance company will pay for it, so I’m wondering if it’s worth the time to even make the switch any further. I like the convex seal a lot, as well as the belt, and I’d really like to keep it, but it’s not listed on the Medicare list, so I can’t be sure that my insurance will approve.

I REALLY need to finish the post about different kinds of ostomy apparatuses (yes, that is the plural, I looked it up!) I started last week but still haven’t finished yet — it gives a better context for those readers that aren’t ostomates or their friends, family, or health care workers, and might not be familiar with the lingo or the conditions that require it.

For the record, this is what I’m wearing right now (if I can get the pictures to work):

This is the belt. It helps keep the bag more secure:

The belt latches to one side of the bag, circles the waist, latches to the other. You take it off at night. I’m not sure still how I feel about having the bag so tight against my abdomen, although it increases my “wear time” (days between when I have to change the whole bag, as opposed to just cleaning it out). It sometimes leaves me feeling bruised, especially after I eat and my belly gets puffed up.

Constant decisions! Of course, I only have experience with two systems, so I don’t know if I can even judge yet.

We’ll see how it goes. How was your first full day of summer? Don’t forget to look out for the super moon tomorrow night!

Technical Difficulties

There’s some problems, apparently, with my free web host and its communication with WordPress, so tons of graphics you usually see on my pages have disappeared and left those those annoying broken graphic sign thingies.

I can’t possibly go through hundreds of posta and fix them, so I really hope the host does! Do you think you guys can put up with it for a while, or dhould I get a free photo host right away?

Six Week Check Up!

Today was my first follow-up visit with my surgeon in Burlington (Vermont, I’m in New York). I’ve been waiting for today on two levels: finding out how I’m doing and if any of my restrictions can be listed, and a chance to talk to The Man (I love my surgeon so much — Dr. Neil Hyman, MD. He’s one of the kindest, most awesome doctors I’ve ever had, and he’s one of the top 1% in the country for gastrointestinal surgeries.) and The Woman (my equally awesome WOCN) about my belly, wound, and stoma. It was also my first adventure away from home that involved more than just the 15 minute drive into Plattsburgh to the hospital doctors’ offices.

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Pain and Worry. (Warning: Graphic Grodiness)

The two feed off one another, and I’m feeling them both especially today. I’m having serious pain on my right side and in the stinky booty zone that has been building over the past few days. The right hand pain is the worst today, and even the maximum dose of my pain meds, which I’ve been trying to cut down on, isn’t even touching it. The output Bag Lady is generating is completely liquid, which is the Bag Lady manifestation of diarrhea.

Of course, having these symptoms makes me go to the worst possible explanations. A blockage? Hernia? I don’t know. Maybe I pulled a muscle, did too much too soon. All I know is that this can’t be normal, no matter what the experts say can be expected.

So, just to make this more relevant to readers than just another whine, how about some information?

From Living Well With an Ostomy by Elizabeth Rayson

Symptoms of Blockage:
* Almost constant spurting of watery stool
* Abdominal cramping and bloating
* Unable to pass gas or constipation
* Stoma or skin around it may be swollen
* Stool may have very strong odor
* “If the blockage is not cleared, the flow of stool will stop, and you’ll experience pain and eventually nausea and vomiting.”

What you should do if you begin to experience a blockage:
* Don’t eat any solid food, and don’t take laxatives or stool softeners
* Try applying a pouch with a larger opening — this provides more room for the stoma to pass the particular food that’s blocking it.
* Massage your abdomen gently with your palms.
* Try taking a warm bath or shower. A gentle abdominal massage, in combination with the heat of the water, can help soothe and relax you, releasing the blockage.
* Try sipping a soothing tea made from ginger, peppermint, chamomile or fennel.

If your symptoms last more than a few hours, however, or if you’re nauseated or vomiting, contact your doctor or go to an emergency room immediately. The best way to prevent blockage is to chew your food well — at least 20 to 25 times. You should also drink lots of water — eight to twelve cups a day.

~~~

Feeling the way I am, and progressively worse instead of better, makes me VERY glad I’m going back to the hospital in Vermont tomorrow for my first post-surgery follow-up with both my surgeon and my WOCN (Wound, Ostomy, and Continence Nurse). One or both of them will hopefully have some idea what’s going on. I definitely want them to check me out physically. I’ve never been comfortable not having someone to look at my wound or my stoma, but the home health nurses I saw (three times) were pretty much useless. Plus, I felt better when I got home than I do now.

What’s the what, ya’ll? Wish me luck tomorrow and no more surgery! *shudders*

Sometimes Things Catch Up With You

I don’t know if I’ve mentioned this, but since I’ve was in the hospital, my sleeping patterns have been really messed up. In the hospital, I would sleep for a few hours, then wake up and be unable to go back to sleep for awhile before getting so tired I pretty much passed out.

Since I’ve been home, it’s been similar. I usually wake up because I have to go to the bathroom, or I’m anxious about my Bag Lady getting leaky and causing a poo disaster. I get up, do my business, and then I can’t get back to sleep. I stay up and read, watch TV, play games on my Kindle. But along with the drugs I take, I find myself droopy and tired to varying degree all day.

Well, today I think it really caught up with me. I woke up the final time (or so I thought)this morning around 9:30-ish, had breakfast, took my meds, and drank my coffee (a special treat I couldn’t have before my surgery!). But even after that, I couldn’t keep my eyes open. I was sitting on the couch just nodding off. So I decided to take a little nap.

My mom came in at 4:30 p.m. to wake me up and remind me about the Bag Lady — she NEVER gets tired, no matter how little sleep you get! I can’t believe I slept all day!

Very interesting…

It’s kind of cool that all the few people who have stopped by to read this blog so far were interested in the dating post.

But I’m more in the mood for cat videos.

Seriously, though, I do love my cats, and I do love to laugh. Needless to say, I am a huge fan of both cat videos and LOLCats. I’d love to meet a man who would dig those things too… or at least mock me in an affectionate, good-natured way about them. I’m over 40! I’m allowed to be a Crazy Cat Lady! There’s an awesome cartoonist named Yasmine Surovec who does a strip called Cat vs. Human (http://www.catversushuman.com) which is completely hilarious. She is a self-proclaimed crazy cat lady (and if her strips are to be believed, she totally is), and her boyfriend is a beloved “cat guy.” You really have to check it out if you think your Crazy Cat Lady mantel is amusing rather than offensive!

Anyway, I don’t have a lot of relevant stuff to say today. I’ve been dealing with a lot of pain and some bleeding that’s go me concerned, so I haven’t been hanging around the support forums or reading articles much. I’m just kind of out of it. My sleeping patterns are all messed up still too, worse than usual. I’m waking up at least twice a night, and the last time, I often can’t get back to sleep. It leaves me tired all day long, and if I take pain or anxiety meds, forget it. I walk around in a zombie daze until I drag off to bed again at 11 pm. The best I can seem to pull off is a few simple games on my Kindle, typing random rambles here, and staring at the TV.

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Can you be positive in the face of pain and other challenges?

I’ve said it before — I’m a whimp. Right now, in fact, I’m all doped up due to serious pain I’ve been in for the couple of days, and I can barely type. And I’m whining about it. What does that say about me? It’s like having a weak voice, which I also have. I seem to have a bit of a cold or something.

So, the past few days I’ve been having an increasing amount of pain down in the lower zones: anus, lower back, and gut. Sometimes it’s as bad as my old UC pain, and I ain’t having that. The problem is, I can take pain meds (at least for now until they’ve decided I don’t need it anymore, whether I feel like I need it or not) and mask the pain, help myself feel better, and function to a much better degree, but… that doesn’t address what is actually causing the symptoms. I’m having pain and bloody discharge more now than I did when I was in the hospital right after surgery. That’s not right, and it worries me a lot. But I’m such a whimp that I’m afraid to talk to a doctor or nurse about it because I don’t want to end up back in the hospital again, or find out that I have to have more surgery. Worst, that my possiblity for reversal is gone.

I feel like I’ve had this exact same conversation with you guys before! I think I might have an issue.

Anyway, my intended point today was talking about dealing with pain. When I’m not medicated and that pain is lingering, it’s like spiked armor hanging all over my body. The pain is focused in a particular area, but it makes me stiff and clumsy all over, difficult to move around or get anything done. Mostly all I can think about is whether or not I want to take a pain pill. This is the first door into the crackhouse, kids. I know this — I have a degree in psychology, as well as grad work and real world experience with addiction. But the rock and the hard place: function and maybe develop a dependency, or just suffer and not be able to do anything at all for months until I (maybe) heal naturally.

So if this doesn’t make the best sense, you know the choice I made. I can’t just sit and be brave. It’s easier to be brave and get things done, live some kind of life, with painkillers onboard. When I’m healed I can address any drug problems that might be present. I don’t have an addictive personality as a rule anyway. I quit smoking just by deciding to. Any substances, alocohol or otherwise, that I did in school, just sort of faded when I got bored. That included drinking later in life too. I just didn’t feel like it anymore. I’m hoping that once I’m healed. I won’t even give a crap about the barely there buzz of my hydromorphone.

~~

Another part of coping with The Bag Lady Lifestyle is the jammin’ fashion gear we get to wear. I’m still working with what they gave me when I was in the hospital. I figured, “If it ain’t broke…” and so far, I’ve had no problems that didn’t originate with plain old human error:

* Adapt Barrier Rings
* Hollister Adapt Lubricating Deodorant Sachet Packets
* Hollister Premier One-Piece Drainable Pouch with Flat Cut-to-fit Flat
* Hollister Adapt Paste

I use both the rings and the paste because I’ve got a dip around the belly button area that tends to be a leak-danger zone. I also use skin prep pads to protect the sensitive area around my stoma and back up the adhesive.

One of the good things about the ostomy supply industry is that it is very competitive, and they really want your business. You can contact pretty much any one and order samples to give yourself a chance to experiment with different types of bags and paraphanalia. I’ve ordered a few things I want to experiment with, and I’ll be visiting with the local WOCN to see what she has to offer.

So what about dating?

I’ve been reading a thread on Meetanostimate when a member asked, “How do you tell someone you’re dating that you have an ostomy?”

This has become a particularly relevant question for me since I became acutely ill last winter. For over a decade, I’ve been satisfied being alone. No, not satisfied, actually happy. I preferred doing my own thing with my own time for my own reasons, after spending my entire youth chasing the non-existent “perfect” man. Ruined my life in the process at a few points, too. I never had a healthy view of relationships or how I should feel about my partners, and I constantly sacrificed myself, my life, and my friends in that irrational need to be paired up constantly. When I hit my early 30’s and my last disastrous relationship imploded, it just struck me: I didn’t want to do it anymore. I didn’t care about getting married. I never wanted to have kids. So I just stopped dating.

Poetically, I became very ill a few years later, when I was trying to better myself by finishing my second Bachelor’s degree. First hospitalization, tests upon tests until they discovered it was a wobbly IBD diagnosis of “probably UC, possibly Crohn’s.” Then… I guess everything just stopped. I couldn’t get the pain or symptoms under control for very long no matter what medications I was taking. I was weak and tired all of the time, and was terrified to leave home and be away from my own toilet. My physical condition left me more or less housebound. The only time I went out was for doctors’ appointments. Luckily (ironically), that state of being got so bad that my doctor sent me to a psychiatrist, and unluckily, I earned a whole bunch of new diagnoses and medications. So I was still stuck in my home, but I was well medicated and out of danger from myself.

Needless to say, I felt less than human, and any inkling of desire I might have been harboring to find a great partner to spend the second half of my life with went right out the window. After all, what would you say to someone? “Hi, I’m Heather, I have a possibly fatal chronic gastrointestinal illness that leaves me at death’s door a couple of times a year and for which I have to take medicines that crush my immune system and make me sick the rest of the time. Oh, and also, I have bipolar disorder, so I’m in a bad mood a lot of the time as well. Don’t you want to go out with me and possibly get married?”

I’m such a prize! And take this with as many grains of salt as you feel necessary, but… on top of all my other strikes, I’m also very heavy. You may or may not know (or have an inkling) that unless you’re on a website specifically for fat people and you’re fat, you can forget it. I’ve gotten the nastiest comments and notes on dating sites — just randomly! I mean, what the Hell is wrong with people that they just take some time out of their day to tell a perfect stranger that they’re hideous and should not only not date, but die horribly?

Not a situation that engenders a whole lot of hope. The worst part is, before I got sick, I had really hearty self-esteem. I’ve never been a beauty queen, but I was cool with that. I’m intelligent and funny, interesting and colorful. I never had a problem with gentlemanly company. When I chose to step out of the meeting and dating arena, I was okay with that, too. I wanted to get to know myself and enjoy my own company. I don’t know that I ever really planned to be alone for the rest of my life, but at least the possibility was there. But now… now I felt like Quasimodo, and my hunchbacks were many, both physical and mental. I suspect this was part of why I resisted surgery as long as I did when my GI had started suggesting it as a possibility a couple of years ago. I saw THE BAG as an end of the line sign. I even said I’d rather be dead than carry a bag of shit around with me for the rest of my life (I think I’ve mentioned that before, but it was so central to my thought process when it came to my UC, that I’ll probably talk about it a lot).

Now here I am. While I’m adjusting to the day-to-day of the Bag Lady Lifestyle for myself, my desire to leave the house and get into the world is less than ever. The ironic thing is after going through this last health crisis — the months in bed, the weeks in the hospital, mostly alone, in pain and frightened, it struck me like a claw hammer that I might not be interested in being solitary and completely independent anymore. I might be ready for a partner to shore me up when I’m feeling weak; to tell me that things will be okay when I feel like I might die from their NOT okay-ness. Someone who can make me laugh, who’ll watch cartoons and horror movies with me. Who’ll give up pizza until I can eat it again just so I don’t feel left out. (There was a whole big thing where I had a stupid breakdown over pizza… it was really dumb, but it’s one of those psychological bruises that I seem to have come out of the hospital with.) You know… my parter, my buddy.

The problem is… I’m less of a candidate for a relationship than ever. Sure, I’ve lost 60 some pounds, but now I have all kinds of floppy skin covered with stretch marks in its place. Now I have a hole in my gut with a bag hanging off that produces shit all day and night. Sometimes it makes noises that I think are hilarious, but I suspect the average person would think were disgusting. In fact, I assume that most people will feel about my condition and accompanying gear the way I did for the first few weeks. I couldn’t look at it, I couldn’t bear to smell it or touch it. I though it was the most disturbing thing I’d ever encountered, and I had no idea how I could possibly deal with it in any way. And that was me — on my body, and I didn’t have a choice. Why would a normal person even consider caring or putting up with it?

On the support forums I belong to, all the people (most of whom I suspect are in relationships that already work) keep saying the old saw that if someone doesn’t want you because of your ostomy, then they’re not worth spending time with. I hate to say it, because I know they mean well, but that is such a load of crap. It’s like when your mom says almost the exact same thing about kids that are mean to you in elementary school. It doesn’t matter that they aren’t worth your attention — it still hurts, and you still want people’s affection or friendship. You still feel like a freak that they reject you, no matter why they reject you or if it’s a reason that’s just wrong for rejecting someone. It’s bad all around.

I have no confidence that I can meet someone, and now that I actually want to, that actually bothers me the way it hasn’t in a long time. I do still have a lot to give, but no one is going to offer me a chance to give it.

File today under “Whiny Pity Party Day,” could you?