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!

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*

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.

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?

Long, slow day.

Been having a lot of pain the last couple of days. No matter how much I resist doing it, I really have to take the full dose of my pain meds when things are this bad, otherwise I end up sitting all bunched up and stiff, not eating or anything. So this afternoon I took two pills. This, of course, makes me feel really good for a while: pain-free and more like myself. But when it wears off, a lot of times I feel worse. And I don’t want to take more. I’m afraid that the meds will stop being affective, and then I’ll really be in trouble. I’m a total wuss when it comes to pain. In the hospital at one point, the nurses put up a special note on my info board letting me know when my next dose of pain meds would be so I didn’t panic and keep bugging them every five minutes like I had been. It actually eased my anxiety and set me more at ease, even if I had a while to wait. At least I knew when the waiting would be over.

That’s another reason I’m giving the J-pouch a serious re-thinking even though that was my goal to start with. Everything I’ve read pretty much describes it as terribly painful, full of all kinds of complications, and ultimately not any better than having an ostomy. Incontinence, diapers, the ability to eat even less than with an ostomy. I don’t know if I want that. But I don’t know that I want to live with the Bag for the rest of my life either. Dr. Hyman says that I have plenty of time — he wants me to recover from this surgery for a good long time before we even start considering reversal. I know I’ll feel better about everything when I’m further along the recovery road. Like everybody keeps saying, I’m only a month out from surgery. Barely healed yet.

It all gets to me sometimes.

Greetings! Adventures in Bathing

Welcome to my new Bag Lady Blog! There will be many tales of adventure, exploration, learning and probably a great deal of whinging here. I hope maybe it will help at least one person in the same position as I am… but then, I’m on a pretty good dose of dilaudid, so I may just be babbling nonsense most of the time. Hard to say.

Today, for example, will be a tale of trial and tribulation… in my mind, at least. Bathing. Specifically, washing my hair, the most difficult part of the process. How can this be, you ask? Shampooing is such a simple activity, you insist? Well, my friend, sit down and hear my song of sorrow.

First, allow me to note that I did shower in the hospital. I sort of remember being wrapped up in plastic and sat in a bench chair in the middle of an entire room the size of a large closet whose entire purpose was bathing and showering. I remember (I had a lot more dilaudid then, along with a metric ton of Xanax to stave off the panic that seemed to catch some mutant hospital bug) sitting there, crying, getting all wet. Then there were a number of occasions where the nurses treated me to the much more pleasant “dry” shampoo bag. A great invention of humankind, I must say. For those who are unfamiliar, the nurse wets the appliance, which is like a shower cap, then covers as much of your hair as they can and give you a good massage (if you’re lucky. If you have a crap nurse, they just dig grooves in your skull as fast as they can and leave you crying… again. I count myself VERY lucky that in two months, two hospitals, and a dozen nurses at least, I ran into maybe two or three who clearly could not give a crap or who were actively hostile. Every other one was an absolute angel and made me feel truly safe and cared for.) and you just comb it out and let it dry. Voila! Clean hair with no water.

So I’m still in this psychological space where I’m very afraid to get my wound or bag wet, especially with our yucky well water. I’ve been bathing my body every couple of days with a classic whore’s bath (sponge bath), which has passed just fine… as far as I can tell. I’m pretty sure I stink because of my bag (probably irrational) anyway, so what’s the difference? But that has left my hair getting nastier by the day. Finally, it’s gotten to the perfect storm point: I have a doctor’s appointment tomorrow, and my hair had gotten to a point that I couldn’t stand anymore.

So there I was with the question: how could my paranoia about getting my wound and bag wet coexist with my need to have clean hair? Well, it involved a shower bench, three towels (including a hand towel — very important), a Mickey Mouse poncho from 1989, a roll of Saran Wrap,  a roll of tape, and the necessary shampoo, conditioner, and comb.

I’ll let you listen to your imagination for a minute before I tell you how those things actually go together.

Let’s see if you put it together right. First, I cut a square of Saran Wrap and taped it over my abdomen, making a semi-sealed cover over ostomy bag and wound paraphanalia. Just in case. Then I wrapped the poncho around my torso, tucked under my arms and pulled up high on my neck, hand towel wrapped around said neck. Sat on the shower bench with my back facing the shower head (Mom assisting, shower head detachable), wet head very carefully so only the back of body gets any spray. Wash with shampoo, rinse. Remove poncho, pat everything dry just in case, peel off Saran Wrap. Spray on conditioner, comb out, done.

Viola! But let me tell you, the execution was a great deal less tidy than the story makes it sound. There was shouting and sniping, throwing and dropping things, water everywhere. Eventually the job got done, but like everything else these days, it seems, there was just a whole lot of extra hassle surrounding it. It’s exhausting, and yet it turned out okay… and frankly, in retrospect, hilarious. I mean, a poncho with Mickey Mouse on it? And yet, it was a good idea. Now that we know how to do it, it will go better next time.

That’s a huge part of what it means to be an ostomate — the learning curve on pretty much everything.

So welcome to my madness! I hope you get something from hearing about my adventures in the Bag Lady lifestyle. It includes ponchos, Saran Wrap, and medical tape!

We need it!