Hey bed-resting Bluegrass

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B'Dereh
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Date Joined Jun 2011
Total Posts : 1912
   Posted 10/4/2011 3:02 PM (GMT -6)   
I hope you're out of bed and feeling better!

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 10/4/2011 4:02 PM (GMT -6)   
Thanks! But sigh, I'm still on "complete" bed rest for at least 8 more days.... then follow-up appt and we'll see.

I've been playing around w/amagurumi -- crocheting small stuffed animals and such; it's a very good bed rest activity. Making them for kids in my life, so far I made two snails (big hit -- I had them delivered to the kids, but one said I could have sent by snail mail, ha, ha), a ball, and a bird. Next up is a stegosaurus.

The nurse taught my partner what to look for, so mostly the wound is monitored at home.... stitches are still holding, but it's a little scabbed. Partner has been enjoying working at home and not having to deal w/traffic and interruptions, so I don't feel too guilty about all that's being done for me.

Getting better at horizontal typing.....

I go outside a few times a day, don't really go anywhere...really hoping that after next week I can walk more..... miss it, plus I see how much worse my digestion is lying around so much.....didn't even have abdominal surgery this time, but my guts want walk, walk, walk!

Surprising how tiring bed rest is...I feel like I've had a full day by evening. I am getting good at using the grabber, lollipop sponge, and sock pull. I remember not to bend now....

Thanks again!
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 10/4/2011 10:10 PM (GMT -6)   
bed rest makes you more tired than running a marathon!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

Ironmum
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Date Joined Oct 2010
Total Posts : 776
   Posted 10/6/2011 10:52 AM (GMT -6)   
hang in there.. sounds like you're doing really well. You might not feel it, but your posts come across as so positive and upbeat! the crocheting thing sounds fab too!

really well done.. and REALLY hope this is the end for you now and you can get back to full and healthy life with NO MORE surgery

stay strong and keep us posted
Take care - big hugs xx
Sarah - 39 year old mum of 2 boys, runner/triathlete from UK
June/Oct 2010 - Peritonitis/perforated diverticulitis. Sigmoid colectomy, temp ileo then reversed.
DX Colonic dysmotility.
July 2011 - Permanent end Ileostomy after begging surgeon to put it back
Follow my blog - http://bagthatruns.blogspot.com/

B'Dereh
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Date Joined Jun 2011
Total Posts : 1912
   Posted 10/6/2011 2:47 PM (GMT -6)   
Hi Bluegrass,
I have to agree with Ironmum, you sound great and cheerful, horizontal or vertical! I think being a patient and a convalescent is difficult for everyone, at least it was for me, because you're neither here nor there, in an in-between stage in which things are probably getting better but you're only sort of 25% in life. We know by now that it passes. After my colectomy I was sent to 3 weeks in a reha clinic (great insurance where I am) and being there was definitely not my thing, although the reha-exercise really helped get my strength back. I would rather have been at home, instead of in a clinic with about 400 strangers and not really bad but not great food. The worst thing that happened is a man started talking to me in the cafe, told me what he was "in for" and I told him what I was "in for" and he said, "oh man, you have a bag? I thought we could have some fun but if you have a bag then forget it." The word presumptuous shmuck came to mind but he was so stupid there was no way I would respond except to walk away.
What I'm trying to say is, be glad you can bed-rest in the comfort and privacy of your own home where you can decide what you want to eat.
Adn it must already be better since you wrote. Isn't scabbin a good sign?
I know about horizontal typing. I got me a kind of tray on legs that fits over my lap and tips up like an architect's table, for my laptop. I'll just take my iphone into the hospital with me when I go in for 2 weeks in December (I think) but it's hard to do everything by phone.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 10/6/2011 6:27 PM (GMT -6)   
Thanks. I assure you that I don't have an inherent cheerful disposition or anything, if you knew my in in-person life you'd know that.... but this really isn't that bad for me. I am still so in touch w/what it was like to be sick for so long and I feel pretty good now. I am a homebody, and this would be way harder for people who are more social/outdoorsey/etc.

It felt like for years my home time was mostly collapsing from being exhausted from work, worrying about whether I'd be well enough to go back to work the next time, dealing w/my symptoms, etc. The last months before my surgery were terrifying -- I broke out in painful boils, had an eye condition that was so bad I could hardly function, had diarrhea all the time, and then got a really high fever. I haven't forgotten....

Now I'm just trying to help stitches close.....guess that is the gift of hard times, gives you perspective if you let it....

I think there are some hopeful things going on in the news now too, and I'm following them...

If I didn't have the help at home I would have gone to rehab, and I am very glad I didn't have to do that -- definitely less relaxing.... what a jerk! To have to deal with a kind of ostomy- specific sexual harassment in rehab....

I took a break from the stegasaurus, which is more complicated, and I made an owl today. Ordered plastic eyes, what a funny thing to shop online for, eyes! I am really not that crafty, but I'm managing to do these w/out much self judgement.....they are all flawed, but good enough. It's really pretty funny to people who know me that I'm spending my time this way....

My partner brought me some library books today, maybe I'll start reading again...I am a big reader, but for some reason, there's always a lag in it when I'm recovering....

Nurse comes tomorrow....not sure if these are dissolving stitches or not, but in today's check, a few were missing (but the wound was closed). Hoping that's good.

Thanks for your interest.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 10/6/2011 9:01 PM (GMT -6)   
Bluegrass..sorry to hear you're back in bed...but, glad to hear you are on the mend...

You said something in a post about an eye condition? I'm curious because my eye lids seem to be getting worse..I've been to three eye doctors in town and they all say the same thing..one wants to cut out the little glands in my eyelids...doesn't sound like the right thing to me...they are swollen..and, there is crusty stuff in the morning after I sleep...

Hope all is well...

jimmy

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 422
   Posted 10/6/2011 9:08 PM (GMT -6)   
B'dereh!

Funny story about the "shmuck" in the hospital....I hate to be so blunt, but some guys in this world couldn't find "fun" in a bordello...LOL! Did the guy have his brain removed or was his brain condition "permanent?" LOL!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 10/7/2011 8:43 AM (GMT -6)   
Jimmy, LOL on your last comment.... regarding the eye thing, yours sounds nasty but very different -- is it related to gi issues?

Mine was marginal keratitis, which the opthamologist said he'd never seen in 30yrs in a Crohn's patient (iritis or uveitis are more common), but he said was likely related as it's inflammatory. I was first diagnosed w/pinkeye, but it got so painful and light sensitive that I was wearing sunglasses inside and was just miserable....took a while to get it that it was more than pinkeye as other people kept telling me how uncomfortable that is and light sensitivity is listed as a symptom, but I was so used to extreme symptoms.

In any case steroid eye drops, best drug ever, had me feeling much better in less than a day.... this was when I'd tapered off pred and it didn't go so well, when I got back on pred, it took care of several things.

What kind of eye doc are you going to? The opthamologists are the only ones that are MD's. Hope you find something less drastic, but 3 opinions is a lot....

Sigh, I think I opened up my stitches....blood on the gauze this a.m. in a different way....surgeon said this was likely and not a big deal for the outer layer, but I went a week and a half w/out doing it... trying not to go there, but it feels like I messed up bed rest....will see what the nurse says today.
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 10/7/2011 3:21 PM (GMT -6)   
Bluegrass don't beat yourself up, you haven't done anything wrong, you've been doing your best. The stithces are in a very unfortunate and difficult place and that's why lots of people have healing problems there. If the doctor said this is not a big deal for the outer layer than it sounds like you're doing good if it only happened once so far.

I loved the "stoma-specific sexual harrassement". Really I didn't feel harassed, more like I was in a state of disbelief of the overwhelming stupidity. (he was in for a diverticultis OP. everyone there was there for gastro, cardio or chemo).

I am a lousy patient, I have to admit.

You don't have to make the complicated dinosaurs if you don't feel like it. The bed rest will be over soon and that would will heal.

Here's a new snack I had tonight: blue cheese on pear slices. It was heaven.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 10/7/2011 4:42 PM (GMT -6)   
Thanks. Not beating myself up really, just disappointed, and I really don't feel as well today, not sure what that's about. The nurse said it looked like there were two stitches that had come out, and she didn't see anything worrisome. No fever, so that's good. She contacted the surgeon to see about any changes in treatment, but not expecting much w/the holiday weekend in the US.

I think it's also hard for me w/being bed ridden on the high holidays, and I had that post about Yom Kippur, but my digestion seems so precarious w/the bed rest, that I'm not changing anything about eat or drink.... I was down on Rosh Hashana too.... will check out the streaming online service again.

I did just finish the dinosaur and it's really cute.... my partner's daughter is on her way over and I can't wait to see her reaction.... (she's my cheerleader and color/design consultant in this crochet endeavor, but she hasn't seen this one at all)

This is totally OT, but I got so excited when I saw who won the Nobel Peace Prize today, really perked me up..... three amazing women, check them out if you want some uplift.

Blue cheese on pear sounds yummy..... how much raw pear can you eat, though? I wouldn't risk too much.... I am mostly going w/the peanut butter pretzels and chex mix.... plus we have a bunch of leftover cheese and crackers from a function that I've been dipping into a lot...
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 10/9/2011 7:39 AM (GMT -6)   
Bluegrass, the nurse said it will be alright, and I cannot imagine a single case in this procedure that goes 100% wihtout breaking a stitch, it's in just the worst, most difficult place next to large muscles that take part in too many kinds of basic movements. One or two is bound to break and so progress entails one small step backwards to get going forwards again, which is where you're headed.
It does sound, though, like you've had it up to here and have gotten quite frustrated with this stay in bed crap. I don't blame you and I think that getting cranky now is the most natural and healthy thing to do.

I re-discovered red pears last week and have been eating them all kinds of ways. At this point, I don't care what lands in the bag. I do have to say that my stoma has been wonderful to me and I've had no issues eating anything at all. I did start adding different kinds of food after the 2nd and 3rd months, only in the last 2 months really eating all the green salad I love. Just not things like celeray or anything with long stringy fibers.

These holidays of ours are in no way OT. I could write dozens of pages about fasting and why we fast on these days: all issues that ultimately connect to being a well, healthy person. OK I'll confess: long before my illness, I did some time in rabbinical school. Obviously it was reform, and while I encouraged fasting because it plays an integral role in a very essential process, the main thing is to "let your conscience be your guide" if you are deciding to fast or not to fast.

But fasting is a horse of a completely different color if you are in any way ill or convalescing during these days: you may not fast. You are exempt from the mitzva. Fasting means not even drinking water (which will stimulate the appetite) and you cannot interrupt the heaing proccess by not drinking water for 24 hours. The most fanatical Haredi would tell you not to fast when you're ill or convalescing. Human life and health will always take priority over the law (like if a religious person is somewhere where he can either starve or eat pork, the person should eat pork). People tend to misunderstand the mitzvot, particuarly on these days, and think that they have to sacrifice everything in a kind of morality frenzy, especially when they ignore the entire business all year long.
So, for anyone with a stoma, you are exempt from fasting, because not drinking water could be a bit detrimental, your chances of dehydration are much higher than that of those without a stoma.
What's also interesting, is that it is written in the law that there is a certain max amount of food you can eat at one time without it counting as eating food. The amount is something like 7 chocolate chips (or the same amount of cheese or peanut butter). Eating that much here and there helps, for example, healthý pregnant women who are fasting but getting dizzy.
I just remembered, I wanted to check out www.ritualwell.org and see what some women have written about illness, surgery and maybe even stomas. Lots of reform new liturgy by women for lots of life turning points that are not in the mainstream liturgy. I remember how, when my UC intensified last winter and the stricture was causing trouble, I started to examine the text of the blessing for going to the bathroom that the orthodox say:

"Blessed is G-d who has formed woman and man in wisdom and created in them many orifices and many cavities. It is obvious and known before Your throne of glory that if one of them were to be ruptured or one of them blocked, it would be impossible for a person to survive and stand before You. Blessed are You that heals all flesh and does wonders."

(Yes, I did indeed change the pronouns)
Then I started to understand a lot.
None of it is OT.

PS: I am totally not religious at all but will always be endlessly fascinated.

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 10/9/2011 7:50 AM (GMT -6)   
I mean not the pronouns. I changed the gender to both and took out the references to G-d as male.

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 10/9/2011 8:12 AM (GMT -6)   
Very interesting stuff.... the rabbi at the hospital is one of my favorite people there, partly just because of his calm, unhurried personality, but also because he makes stuff relevant to sick people (his job) and doesn't do any sort of proselytizing (which can happen even in your same religion). He has done a few prayers for the sick for me that just sent chills, even though prayer doesn't generally work for me much....

I do like the bathroom prayer and definitely thought of it a lot when sick.

I wasn't feeling bad about not fasting, but trying to find some meaning in the holiday....read one thing that said Yom Kippur is like practicing for our deaths, and then we renew our choice of life at the end..... I love that, but I feel like that's what my hospitalization w/a scary fever and then decision to have surgery was like..... and that was maybe 1000 times more powerful than fasting for the day, which just seems fake.

Another is about pausing from our busy lives...watched a service that kept talking about that, and these weeks are one big pause for me. They even said things like sometimes we have to get sick to appreciate X etc, as if no one there were sick....

I am so hard on myself in general that the repentance stuff is redundant...

But at the end of the day yesterday, I sent a donation to the local branch of the occupy wall street group, and that was what felt meaningful to me, as a recommit to fighting for justice act..... especially since it's being led by folks in very hard times financially and I am doing a bit better that way, despite my health and current inability to be there in person....

That 7 choc chips thing is weird and sounds like cheating.... like how some rabbis think gelatin from pigs is kosher because it's made from hide, which isn't food
49 years old, female. Sick for way too long with Crohn's (or possibly UC) Proctocolectomy and permanent ileostomy in Feb 2011. Surgery for lingering perineal wound on Sept 26. Other than the wound, been feeling healthier than I have in years.
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