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B'derech
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Date Joined May 2011
Total Posts : 31
   Posted 6/13/2011 7:44 AM (GMT -6)   
Him I just noticed from some posts that you are in Israel. I lieved in Tel Aviv for 2 years after aliya, so just to say ma shlomech?
B'Derech

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 6/13/2011 8:09 AM (GMT -6)   
LOL...... now you've managed to surprise me there :D hahaha ani beseder. when was it that you lived in Tel Aviv?? i live not so far from there - in Hertzlia. do you come to visit sometimes? do you have family here? how funny... :)))
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

B'derech
Regular Member


Date Joined May 2011
Total Posts : 31
   Posted 6/13/2011 8:22 AM (GMT -6)   
I lived there from 2005-2007. I also lived in Ranana for the first few months, near Herzliyah. I have some distant relatives in Rehovot, and I'll probably go back to visit next year. I miss it, it was a very rich time for me while Israel is not very easy to live in.  
The last two years have not been a time when I could think about visiting, I was too sick, too unemployed, finally had surgery in April and started a new position on June 1st.
 
I used to get confused when people said haval ala Zman, because sometimes they meant it and sometimes it was like sababa.
 
There are so many people in Israel with Crohns, and Colitis, we can't be the only ones on this site. When I met young Olim who were doing there army time, they often said they were sick from Crohns.
 
Are you born there?

2b ColonFree
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Date Joined Nov 2008
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   Posted 6/13/2011 9:40 AM (GMT -6)   
yeah HAVLA"Z (haval ala Zman) LOLOLOL you crack me up.. how bout sof haderec :) and lapanim.. were you able to figure those out? lol... that is sooo cool to find someone who speaks my laguage here AND knows the slang too! you've just made my day! i've never found anyone from israel here. you're the first one!

hey you were actually my neighbour, ranana is a 5 mins drive from me. if you come to visit, i'd love to meet you :) it sounds like you speak hebrew quite well, don't you?

yeah there are LOTS of young ppl with crohns and colitis and there's an amazing israeli crohn-colitis forum on ynet:
http://www.ynet.co.il/home/0,7340,L-2230-18115,00.html

i don't have crohns or colitis. my problem was different, it is called colonic inertia - nonfunctional colon. i could go 2-3 weeks w/o a bm. i was like that for 17 yrs, tried countless diets, treatments and medications.. nothing helped to make it better and it was only getting worse and worse, so the only solution was taking out the colon and creating an ileostomy. drs don't take this problem seriously enough, cuz it's not life threatening (so they claim) but it ruins one's quality of life completely. but lately there's more awareness to it. i couldn't find NO ONE in israel suffering from colonic inertia, but found dozens of women on this site. i felt SO alone and had no idea what to do, till i found this site. this site saved my life!

were you treated in israel for your crohns/colitis? who was your dr?

congrats on your new position! hope everything goes upwards for you from here on! yes, i was born in israel. are you a he or a she? may i ask how old are you? i'm 38. oh and i'm a she (well, you probably learned that from my name lol)
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

B'derech
Regular Member


Date Joined May 2011
Total Posts : 31
   Posted 6/13/2011 10:27 AM (GMT -6)   
Actually, my colitis got worse in Israel, I thought it was the stress of having emigrated there. I had a diagnosis in 1998 an then almost nothing happened until I moved there in 2005. It was so bad I had to drop out of Ulpan. (As a result, I can barely speak Modern Hebrew, plus where I worked everything was in English, but I can read old Hebrew because I studied it at university). I can't remember the name of my GI doctor, she put me on Mesalazin (asa-5), and wanted to put me on cortisone but I refused (at the time, that is. Two years  ago I had to take cortisone for real and the colitis became cortisone-dependent and then didn't respond at all). She was with Maccabe and she came from Romania.
 
I am a she (or should I say HE in Hebrew  :-) !!!
(no one on the site will understand that joke)
 
I had my colectomy on April 5th, the same day Juliano Mer got assassinated, but I didn't read about it until I was home again. It sort of freaked me out, not only because someone actually planned and carried out a plot to kill him, but also beause I met him once in New York a long time ago. I could hardly think about anything else for a few days, and combined with the new stoma and bag I was in a strange state of mind. But what are people in Israel saying? I heard they arested someone but without really investigating.
 
I have heard about colonic inertia but I am surprseid the GI doctors didn't take it seriously. Everyone in the world says the doctors in Israel are great. 
It's like when colitis inflammation is so bad that it makes the colon close down. It's just as dangerous. I had a stricture in the colon which is very unusual with colitis,and my doctor was sure it was about to close down or could become malignant, that's why I had to have the colectomy.
This site is great and I'm so happy to be able to write about the last weeks of my life in English, because I live in Germany, where there are a lot of sites for ostomies, pouches and colitis, but of course it's easier to write in your own native language.
Your English is really great.
I chose my forum name B'Derech so that I could be positive about this long process with operations and stoma and bag.
 
Were you in the hospital in Tel Avi or Herzliyah?
 
Do people where you work know that you have a bag? I am having a weird time dealing with it at work, it's like two stress situations - new job + bag are really shaking me up.
Erev tov (it's almost 6 here)
B'Derech

blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 6/13/2011 10:50 AM (GMT -6)   
Well, just wanted to say that I understood your he/she joke..... me is who and who is he and he is she ..... I did learn enough from Hebrew school for that.... I was in Israel for 6 weeks in 1978 when I was 15 .....

Glad you two connected....
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

B'derech
Regular Member


Date Joined May 2011
Total Posts : 31
   Posted 6/13/2011 11:05 AM (GMT -6)   
OK so maybe we can pull a minyan together on this site?

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 6/13/2011 2:52 PM (GMT -6)   
LOL...... you guys crack me up :D that is just great!!! well B'derech, blueglass managed to surprise us, didn't she!? blueglass, israel has changed greatly since that time you were there, it's time you pay us a visit ;) see how things progressed since then. i'd be more than happy to host you guys :)

B'derech, how aweful that just as you imigrant to a new country, you get the worst flare.. that must have been the worst time for you. it is known that stress can worsen exsisting illnesses, so it makes sense that imigrating to a new country would cause a flare. i'm so sorry you had such a hard time here. i'm in maccabe too, it's the best kupa (compared to the other 3 kuput). i was treated in Ichilov in Tel Aviv and had my surgeries in Assuta through Maccabe Zahav. too bad you havn't had the chance to learn hebrew as you could. are you able to read a little (i assume not). like שלום. are you able to read that? oh yeah, i'm giving you a pop quiz in hebrew now lol.

i don't know anything about the UC/Crohns drugs, but the cortisone sounds like a horrible drug to take regulary. are you on any meds now still? hope you're able to cut down all of these meds completely.

about mer, all i know is that he was assassinated by fanatic religious palestinians. they hated his activities in the palestinian community, they said it currupts their youth. i really don't know much more than that. it's sad. and i've heard his one yr old baby was in his lap when those animals shoot him.... i can't think of things like that, just makes me too sick. sorry you had to hear about something like that just right after your big surgery. that's why sometimes i rather not reading the papers or listening to the news. sometimes i just want to keep my peace of mind, you know, so i just turn everything off for a while. take a break from all the evil out there. at least for a while every now and then.

where were you born, your country of origin? and where did you imigrant to israel from? i didn't quite understand your forum name tho. you mean derech in hebrew, like rode/way? what does the B stand for?

thanks, my english was always pretty good, but it has improved significantly during the past 3 yrs since i joined this site :) not only i learned a lot about my condition, the surgery, the stoma etc, but i learned more english too.

oh now that i think of it... does B'derech mean "on my way"?? am i right?? or did i miss it totally?

well.. about work, i worked for 8 yrs at the same place till my ileostomy surgery. i meant to go back right after surgery, but wanted to come back for only half day for couple mons or so. they gave me hard time about it. some ugly things has been said. i couldn't go back full time, so decided to leave. 2 mons after surgery found a new job. it wasn't too bad with the bag and all. like you, i didn't tell ANYONE there about my bag either. just didn't feel like getting into it and there's no point for them to know right at the begining, right? but they noticed there's something strange with me when it comes to the b/r. they sensed something just b/c they noticed that every time i go to the b/r i take a few wipes with me. that seemed strage to them. but how do i do it w/o anyone noticing it?? it's seems impossible to me.

anyway, unfortunately now i'm unemployed. just hoping i find a job soon, cuz i'm getting really stressed financially. i think that we shouldn't say anything about the bag right at first when we start a new job. it's not that i'm ashamed of it, not at all in no way, but it's like it's no one's bussiness. maybe if i work for yrs there and i find best friends, then maybe they will have the privilege to know. maybe.

layla tov ;) - it's almost 11 pm here.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

B'derech
Regular Member


Date Joined May 2011
Total Posts : 31
   Posted 6/14/2011 2:35 PM (GMT -6)   
Hi Hodaya,
 
It's true, Aliya means an enormous amount of stress, emigration means emptying out your own home, giving it up, saying goodbye to a life in one place and go to another country to start something comepltely unknown. Perfect time to get a flare up. No, I'm not on any meds anymore an am very happy about that.
Right, B'derech mans on the way, because I wanted the removal of my colon to mark a time of setting off on a new and differen way of living life. It was an absolute trauma but I'm trying to let this time, wearing the bag and everything, be a time of letting go of all negative thoughts and habits and letting positive things happen in my life. Getting my new job was a great event, because I was offered the job only three weeks before surgery and I was able to schedule my first day of work 8 weeks later, so I'd have enough time to heal, adjust and get my energy back. It worked perfectly.
I'm American, but the way.
I'm sorry that hapened after surgery with your job of eight years. Maybe it was for the best, because if they were unwilling to accomodate you when you needed to convalesce, it's not a good sign. It's not easy findin work in Israel so you had some luck. Why don't you keep the wipes in your handbag and just carry the handbag into the bathroom with you? We always feel self-conscious at work, but what I really think is that even if people notice you have some kind of secial bathroom issue, it would never occur to them that you have an ostomy bag, because it's a bit too far out, weird and horrible for most people to imagine. Probably they think something like you have a sore tachad. (Now I wish I had Hebrew letters on my computer).
I agree, we should say nothing about the bag. I have only told very fewfriends, only the ones I knew could deal with it, and it was the right decision. I have to have the final two operations in the winter and I have to act like it's something new that I didn#t know about before. I don't have to tell them exactly what operation it is.
I have to go because I'm getting a skype call.
All the best,
B'Derech

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/14/2011 3:28 PM (GMT -6)   
so glad you're not on any meds now :) that's absolutely great! aliya is tough.. i can't imagine giving up your whole life and property etc.... it's terribly hard!!

so i was right about your name YAY :):) yeah so pleased with my self lol :p i wish you the best of luck with your new life Bderech.

it is a good thing i don't work in that place any more.. a VERY good thing. for many reasons - too long a story. knowing about my condition among other things and playing on that and paying me low salary even tho they say i'm one of their best workers, just that i'm not stable b/c of my medical condition. and lots of other reasons why i shouldn't continue working there. i'm hoping to start new, it's just hard, since i don't have high education and enough skills. will see how i manage.

BTW, that's exactly what they thought, that i have diarrhea and a sore תחת :p so after a while someone there asked me if i had crohns.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

B'derech
Regular Member


Date Joined May 2011
Total Posts : 31
   Posted 6/15/2011 3:26 PM (GMT -6)   
 

Hi Hodaya,

I just tried writing to you twice and the email kept disappearing, self-deleting, on the website. In fact, everytime I started to complain about how I can't stand having a bag anymore, it would delete itself, so I guess it was a way of being told that I shouldn't write frustrated thoughts and other people don't need to read them anyway.

Can I ask what happened with your pouch?

I wish I had Hebrew letters on my keyboard.

I'm sorry you were working somehwere so exploitative. That can happen in Israel in all kinds of ways. I was working at a major institution and was getting completely abused by my supervisor, and there didn't seem to be any control or structure for dealing with that.

Where I work now, it's really fine, just a bit chaotic and then I need at least an hour to get there and home, so I am not really really tired and ready for bed.

Isn't your name from the root word for thank you?

I have to go to sleep!

B'derech


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/15/2011 4:32 PM (GMT -6)   
how funny! but i can totally understand you're frustrated about the bag and all, totally understandable! you have every right to be. and this is the exact place to vent, so if you feel like it again, try again to write it. i don't mind listening.

i never had a pouch. they took all of my colon out, but left about 20-25 cm of rectum (from anus up), so having still that much, that is enough not to need a j pouch. my problem is that i have a functional disorder in my rectum and i cannot push out the stools, so i had to find the stools another way out - the stoma. it truly makes my life much easier and i'm so very happy with it. removing the rectum and creating a j pouch won't help either, cuz it's a problem with one of the pelvic muscles from the out side of the rectum, and even when creating a j pouch, that muscle has to stay, therefore the disorder will still be there.

course, if someone had told me this how it will be in the end, i'd think it's the end of the world for me. and after my colectomy w/ileo-rectal anastomosis when i realized that it's not working and my only solution is an ileostomy, i was crying day AND night non stop (literally). but i was suffering with this problem for too many yrs - 17 yrs!! and i've had ENOUGH! so right after ileo op and after all the healing part was over, i realized how better i feel this way and how much the stoma actually helps me to live a much more normal life... it just seemed to me like the most beautiful thing and i never want it to be closed ever! not for a million bucks!

so glad you like your new job :) you've been through SO much, finally it's bout time you gain your happiness again! you deserve it!

yes, the exact meaning of my name is thanksgiving/prayer of thanks. just don't call me thanksgiving, heh! ;)

so you're able to read and write some in hebrew, that's great :) maybe i can ask my sister (who lives in San Diago) how she managed having hebrew letters, cuz she always writes to me in hebrew. she arrives here tomorrow and she and her two kids are going to stay with us for summer break, so will let you know when i ask her. oh i'd love to see how you write in hebrew ;))

g'night! but it's also night time here, so how come it's the same for us?
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

B'derech
Regular Member


Date Joined May 2011
Total Posts : 31
   Posted 6/17/2011 2:16 PM (GMT -6)   
Screaming! It happened again, wrote you an entire email and it disappeared!!!
Was just asking if you know when there is that music festival in Abu Ghosh?
I had also just written a lot of complaining about how much I hate the bag and how I went to a therapist yesterday and what I told him about it. He was quite good and was very informed and enlightened about the operation.
I am exhausted and do not think I can rewrite that entire mail.
Don't worry about my Hebrew it is really embarressingly awful. I just enjoyed studying the Shoresh system when I studied ancient Hebrew.
Germany is only one hour earlier than Israle, not a big difference, that is why we have night at the same time.
I promise not to call you thanksgiving, Hodaya is a much more beautiful name, I had never heard it before. Where is your family from?
Sweet dreams,
B'Derech

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 6/19/2011 3:32 AM (GMT -6)   
ohhh i can't believe it happened again!! Abu Ghosh festival was on 7-11 June. i wasnt there tho. they usually do it twice a yr, on Shavuot and Sukkot. next one will be on 19-22 Oct 2011.

oh i see, i didn't get it that you're in Germany.. thought you were in U.S.A.

lol thanks :D my mom was born in Egypt and my dad in Bulgaria. they both made aliya with the whole family on 1948 when Israel was established and became Independent. met here and got merried.

i asked my sister how she managed to have hebrew letters on her keybord. she said a friend fixed it to her, but she doesn't know how to do it herself. but i think any computer person can do it for you. i'm not sure whether he'll charge money tho.

and hey, you do know lots of words in hebrew... you know Haval Al Hazman, sabbaba, tachat... that's a lot ;)

i enjoy having my sister and her kids here for the summer. hope we will be able to utilize this visit to the fullest. i mean every year they come, i usually work + i was feeling so sick all the time. this is the first year that i don't work and also feel best i've felt in yrs.

blessings for a great day for you!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 6/19/2011 3:29 PM (GMT -6)   
Hi Hodaya,
I hope you have a really rich and fun visit with you sister and her kids. This time, you definitely will have the energy to do lots of things with them (just have to make sure you take supplies with you all the time...!) I got used to that and found a way to put them into a compact zippered case, and then carry it around with everything else in my large leather shoulder bag.

This has been an interesting weekend. There was a strange coincidence last weekend. I had this old email address that I never use but check once and and a while. There were suddenly some mail from old friends I'd lost touch with, telling me that this address was sending out spam to everyone. One friend was a woman in town who I had thought about sometimes, she has colitis too. We got together yesterday and sat in a cafe talking for six hours. It seems that while I was sick with colitis and having the collectomy, she had early breast cancer and had surgery, chemo and radiation treatment as well. We had such similar experiences, like withdrawing socially and noticing how hard it is to ask for help when you're used to being independent, and how there was a shift in friendships, some fall out and people who were further away came closer.
Then while we were sitting there talking, another old friend showed up coincidentally. It was such a great feeling to see both of them again. So while the hacking of my email address was bad (I had to close that mail address which also meant I had to re-regsiter here because I couldn't get logged in), something really great came of it.

I was just thinking about when I could next come to Israel. Definitely not until I have my second operation in the winter, so maybe in the spring. It is really very expensive to fly there during Pesach. I definitely want to go to an Abu Ghosh festival.

Today marks an entire week without bag leakage!

Laila tov,
B'Derech

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 6/19/2011 3:47 PM (GMT -6)   
thanks hon, and for the advice too. lol i just hate carrying supplies with me :P i never do, but maybe going out on some activities with the kids i should.. oh well. that's maybe the only thing i hate about having a bag, that i have to carry supplies with me.

oh that is so great you were able to get together with 2 of your old friends :):) i know what you mean about ilnesses isolate you and all... believe me i know. it's only now that i'm trying to start building up my social life again and i'm starting from scratch, cuz having my prob last for 17 yrs, i managed to lose all friendships i ever had :( but it's never too late to start over with anything in life.

you can come to the festival on next shavuot. don't know the exact date of it yet, but it should be b/w end of May - begining of June. i'd REALLY love to meet you if you come :):)

HOORAY for an entire week w/o a leakage!!!!

laila tov and pleasant dreams!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

B'Dereh
Veteran Member


Date Joined Jun 2011
Total Posts : 1912
   Posted 6/24/2011 12:49 PM (GMT -6)   
Hi Hodaya,
 
I'm completely whacked from my job and also having to travel over an hour there and back. It's wrth it, I love my job and except for one leak I've ben able to ignore the bag while I'm there.
I would really suggest carrying supplies around. I take two bags, two eaken seals, plastic bags, wet wipes and tiny scissors and it all fits into a make-up carrier with a zipper. A couple of Saturdays ago my bag leaked twice and I needed both of them. Probably it's not going to happen, but imagine it happens and you're out somewhere and not prepared! It's my worst nightmare.
Beleiveme you can definitelystart out a new life now. Getting through an illness is definitely the time to start. I am also looking for a new apartment and trying to lose weight, although I might be attempting too much "new" at one time!
I honestly hate having a bag, but IK've managed to make friends with my stoma because I think it is working very hard and doing its best for me, and not irritating my skin, and just be a very good stoma. After all these weeks it has started to take on a personality (I'm getting silly sometimes) but I know and it knows that we aren't going be together for ever, because in the winter it will be converted into a a j-pounch and so the work it does for me will be a bit different and will not be on the outside of my body anymore.
Tomorrow I am going to try using a flat one-piece bag instead of a convex one and see how that goes...
Laila tov and gut shabos,
B'Derech
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