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Total Colectomy Part 34

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Posted 5/14/2010 5:25 PM (GMT 0)
Allie,  Hi wow you have gone throug a lot at such a young age.  So do you have a ostomy then?  I am doing much better and feeling good again...no more salad for this girl..hope they find answers for you.  It is just terrible how so many people suffer, and just deal with things till finally they find help...God bless your young heart...my prayers are with you.

Leslie

Posted 5/14/2010 5:43 PM (GMT 0)
Hodaya,  Really no one else has a rectum with a j-pouch hooked up to it...????  It is all on the inside so its all good....

 

Keep up the good work, your so very good on this site so we depend on you for info..

 

Have a great day...

 

Leslie turn yeah nono

Posted 5/15/2010 1:42 AM (GMT 0)
I texted Lizzie and her husband texted back that Lizzie was home, but feeling rough. I sure hope she gets a break soon and starts feeling better.
Posted 5/15/2010 1:47 AM (GMT 0)
Leslie, I think what Hodaya meant was there aren't any of us with colonic inertia with a j-pouch. So, now you have a j-pouch and Lizzie has a k-pouch. And pretty soon I will have an ileostomy pouch.
Posted 5/15/2010 4:23 AM (GMT 0)

Hi Girls!

Haven't talked with Lizzie since 5/12 but texted her tonight & told her I would call tomorrow as I was out to dinner w/ friends.  always praying for her.  My husband promised me a visit with her this summer so I can't wait; would love it if many of us could get together!

Jacoby-Hang in there; it may seem like things are taking FOREVER but soon everything will start to work and you will be on your way to a whole new HEALTHY life! Just please, please, please follow the LOW RESIDUE DIET even long after the drs say it is ok to introduce new foods.  So many people on here try eating raw fruits & veggies 4-6 weeks out of their surgery and end up with nothing but trouble and say I knew I shouldn't have done it but the food looked sooooo good.  Your body has been messed up for so long that you don't want to do ANYTHING to harm it now.  I always say to myself, "Is this one moment of food really worth risking complications that could result in an obstruction?";  then I just don't eat it, and believe me it has been extremely hard sometimes but my successful surgery and good health is much more important than a piece of food.  Sorry to lecture but I always pray for the very best for everyone and am so sad when they are sick and hurting, so I just want people to see how important it is to do what you can to possibly have the very best outcome for this surgery. Hugs and prays for you:)

Hodaya- Praying that your test date gets moved up, you will get some answers and the drs will be able to help you very soon.  So sad when you are in so much pain; love you and miss talking with you.  I will have to get in touch with you through email or something where we can talk sometime very soon.   Love you:)

Janie-LOL-know just what you mean about the arobics; since all of my kidney trouble I frequently have to bend over and rest on the top of my thighs to finish going to the bathroom.  My husband walked by the bathroom tonight & saw me bent forward with my hands on the floor & asked what I was doing. I started laughing & kind of gave him some funny explanation bc he gets sooooooo worried about me if anything is possibly wrong.  I think scar tissue has formed or something but not dealing with it right now; see my gi again in October, if it's still that way will have a scope to check for a stricture or discuss scar tissue/adhesions.  Got to love our lives:)

Tracy-Is school almost over?  Sometimes I just want to count the days and other times it's like I wish I felt like this the whole year because I could have done so much more for these kids; can't go back, just forward.  Praying for you as your time is getting closer.  You have been waiting for so long.  ? is your dr "waiting" on your inertia or did I read your post wrong?  If so why? 

Leslie-So glad you're feeling better; NO more SALADS!!!!:)

Marisa, Jenise, Rosmary, Peltz &  to the many newcomers: hope that you are feeling the best that you can, you are thought of kindly & praying for your healing.

Hugs, peace & prayers,

Judy

Posted 5/15/2010 4:47 AM (GMT 0)
answers4me2
Its crazy right...isnt a K-Pouch where you have a tube you stick in it to empty your bowels??  I was glad that I was hooked back up.  Its kind of a delicate balance I am finding out.  Just hoping that this is my last surgery of this kind...surgery really kicks your assssssss....Hope everyone is having a better day then the one before...blessings for all..

Leslie

Posted 5/15/2010 4:53 AM (GMT 0)
Judy  You go girl...I think it was you who warned me about the salad and fruits and vegies.

I really hope everyone listens to you advice, because it is so true.  Nothing is worth what you have to go throgh for putting the wrong thing in your mouth.  I have stayed on just turkey for a week now, so everything is calming down.  But last night and tonight I was in and out of the bathroom most of the night.  I ususaly just have like 3 bms a day but just like I thought just when you think you have it figured out a bit, it changes...YIKES...

Learning how to care for new plumbing, is giving me a plummers crack...LOL 

Night All

Leslie nono

Posted 5/15/2010 5:50 AM (GMT 0)

Hi Ladies!

 

Hodaya- I remember when my motility started to slow down after surgery...talk about a horrendous feeling of dread. I'm not taking any laxatives- Miralax is a nightmare for me, too. It pulls plenty of water into my small intestine, but then it just sits there causing distention and lots of pain.

 

I know that there are more than a few people who have started with an ileorectal anastomosis, but then had to go back and have an ileostomy done. I'm more than willing to do anything to put an end to this pain, but I know having an ostomy is no walk in the park (my mom has been an oncology nurse for 38 years, so I've heard all the stories).

 

I'll keep you posted on my test results. I don't think they will find anything new, but we'll probably get a clearer picture of the extent of the rectal dysmotility. Depending on those results, they may prescribe biofeedback (or, as I've nicknamed it, "Butt Camp"). What kind of scope are you having done in June?

 

Leslie- Glad to hear that you're doing better! Yea, salad is a tricky one. I think I was 1.5 years post-op before I attempted any raw lettuce. I don't have an ostomy; I have an ileorectal anastomosis, and I still don't eat salad very frequently. I never eat it at home because, on the rare occasion that I absolutely must eat at a restaurant, a salad is usually safer than any of the entrees (can't have dairy, soy, red meat).

 

Did you go straight to an ostomy? If so, why did your doctors decide to do that instead of an anastomosis? I'm really interested to hear how you're doing with the ostomy...I'd love any information that you're willing to share!

 

Thanks so much for the prayers. :)

 

On another note, I haven't heard from Sarah (Pelztier) lately. I know they were trying to do more tests, but infections kept getting in the way. Definitely worried about her.

 

Judy- Thank you for the little update on Lizzie. Let us know as you hear more. Many prayers for her!

 

Love, hugs, and prayers,

 

Allie

Posted 5/15/2010 3:29 PM (GMT 0)
Judy, he said removing the sigmoid colon in the colonic inertia patient can sometimes make the inertia worse. So, yes, he is basically waiting on it! But, I am scared to have my colon removed because of the outlet problem. And there aren't many people who are ever cured of their outlet problems....it could be disastrous to have a total colectomy and then have outlet problems...just look at Lizzie!
Posted 5/15/2010 5:02 PM (GMT 0)
Allie  No honey no ostomy for me they hooked me back up , they took my small intestine and hooked me right to my recutm, with a little J-pouch on the inside that is now acts as a sm colon right to my rectum.  So I poo like I have always done out me butttttt....the funny thing is with this new plumbing, if you try to strain to push out your bm, that is lost.  So I no longer have a formed stool, just little small dime shape poo or floaters as I call them or just straight liquid mush.

 

My problem is I swallow too much air cuz my mouth is always dry..so I get a lot of air in my intestines, so sometimes like with the salad I ate the air kept my bowels from really moving for over a week.  I would go tiny bits but could not empty....so once the salad got all the way out that caused additional air, now everything is going good...except for the last 2 nights, I was going every 5 min.  But today my son is cooking a pig in the ground and having a big family and friend get together, so dont know what everyone is bringing so dont know if I can eat or not...so I am going to pack a turkey san and just turkey and bread....so I will be covered..

 

Well got to get ready.  Hope everyone has a great weekend. \

Hodaya-  we are all hoping that you get relief soon, gosh I feel for you so much...just know we are all praying for you.

 

Leslie

 

Posted 5/15/2010 5:20 PM (GMT 0)
Tracy,

Check the email I sent you. I have bad ileostomy diarrhea today and feel like crap. Waiting for local doc to OK a lab slip to have the stuff cultured. Bright yellow clear liquid poop. Sure glad my small is not hooked to my rectum as I'd be on the toilet all day. Going for a walk then take a nap and an imodium if need be. Hope it's just the chocolate I ate yesterday. Maybe this is a serious wake up call to find the "right diet". This is sooooo hard. My original surgeons also have MORE suits. AND still they practice. "Practice" being the operative word. Hope I get back to "normal." Rosemary
Posted 5/15/2010 6:13 PM (GMT 0)
girls, i'm having such a hard time over here, HORRIBLE pain, the same as i had when i was hospitelized with partial obstuction, but a little less intense. it started last night and all day today, so it's been about 24 hrs and not getting better :( and i DON'T want to go to the ER. it's not the first time this happens, but it's been a while. i suspect it's b/c i ate avocado. i tried that few mons ago just a bite or two and it didn't do me good at all, but i thought that maybe now that the pear juice is helping me, it will be o.k, well that was a bad idea!! the strange thing is i do have some output, it's not shut completely, but nonetheless, the pain isn't getting any better. i drank lots of prune juice just a few minutes ago, maybe it'll help and i'll wait till morning, and if it's not better by morning, then i'll go to the hosp.
Posted 5/15/2010 6:41 PM (GMT 0)
Tracy, thanks so much for the update on Lizzie, i'm so glad she's home, i pray she gets better. Rosemary, hope you're better too! Leslie, yep, non of us has a j pouch. thanks so much honey for all your prayers! you're truly so sweet! it means so much!! Judy, ♥ you! my e mail is [email protected]. Allie, i'm having a sigmoidoscopy to check the anastomosis for narrowing, strictures etc. so what stories did your mom tell you..??? i'm also terrified of having a stoma.. what it'll be like etc. but i think we'll feel better with it. my pain isnt getting better :((
Posted 5/15/2010 8:48 PM (GMT 0)
Hodaya, I don't know why you are having pain??? If you are having bm's, then it isn't an obstruction, right? Maybe you just ate something that didn't agree with you...I know Monday and Tuesday were horrible days for me...my stomach was so distended and so painful that I almost went to the ER. But, I just kept on swigging miralax and finally I got enough out to give me some relief. But, you need to be extra careful because you don't have a colon..

Judy, we get out of school May 26th, so, 8 more school days. I am ready to get out and concentrate on surgery and then recovery.
Posted 5/15/2010 9:06 PM (GMT 0)
Tracy, glad it got cleared for you. thanks, i feel better now, the prune juice helped some, not much, but at least enough to make me feel better :) i'm 99% positive it was the avocado that caused all of this pain, not eating that ever again.
Posted 5/15/2010 9:49 PM (GMT 0)
Don't like the fact that so many of you are having troubles today. Please continue to keep us updated (even us quiet ones). Keeping y'all in prayer.

(((hugs)))

val
Posted 5/15/2010 10:08 PM (GMT 0)
Hi everyone! Went on a small vacation with my hubby for a friends wedding so have not been around much. Just quickly skimmed through all the posts. Does not sound like many of you are doing very well. I am so sorry that you have to continue to go through these struggles. All you can do is try to stay positive and have faith that it will get better.

I am still doing well. However I do take Miralax twice daily. Although it makes me go A LOT I would rather. Still restrict my diet. I did try a piece of chicken pizza at a party the other night and did fine. So maybe I can gradually add food. It will be one year post op on June 1. I can not believe it. I call it my first birthday, cuz I feel like I have got my life back.

I did text Lizzie today and she said that she is not doing well and going through withdrawls. She said she can not talk right now and to update you all.

Whenever there is a trip planned to meet you all please let me know!! Cuz I will be there no matter what. I love you all like long lost sisters!
Posted 5/15/2010 10:31 PM (GMT 0)
Hodaya,

Avacado is an extremely thickening food even if just using your small intestine. That is why you had so much trouble.

Thickening foods: banana, rice, applesauce, bread, pasta, avacado, winter squash, potato, anything starchy.

Thinning foods: chocolate, alcohol, grape juice, orang juice, caffeine especially black tea.

I had way toooooo much chocolate the day before last. Hence my diarrhea this a.m.

Rosemary
Posted 5/16/2010 2:57 AM (GMT 0)
Rosemary, yeah, i guess some things like avocado the pear juice cant take care of. isn't your diarrhea better? my pain is back again. it's almost 6 am now and i'm not sure i can go to work like this. i so hate missing another day at work. Marisa, glad you're well!
Posted 5/16/2010 4:42 AM (GMT 0)

Leslie- I'm sorry! I guess I must have misread your little history that is attached to your signature. Looks like I need to be getting more sleep! Your current BMs sound pretty normal for someone who just had surgery relatively recently. Down the road, as you're able to add in more foods, and as your motility regulates, the consistency of your stools will become...well, more consistent.

 

Have you been tested for Sjogren's Syndrome? It's an autoimmune disease that attacks the mucous membranes, and the glands that lubricate the eyes (lacrimal glands) and the mouth (salivary glands). There are also some motility implications with Sjogren's. A good rheumatologist can run the necessary blood work. In the mean time, maybe try the Biotene products (toothpastes, mouthwashes, and saliva replacers). They're made for people with dry mouth, and they do make a big difference. http://www.biotene.com/Default.aspx.  And, of course, drink lots of water.

 

Hodaya- Praying for you! I'm so sorry that you're having so much pain. Have you ever tried carrot juice? Or pears that are canned in juice? Canned pears in juice are a "comfort food" for me. They seem to soothe things. Just be careful- I know we all react so differently to various foods. Please keep us posted. I'm having a sigmoidoscopy on the 26th to check for strictures around the anastomosis, too.

 

My mom has all sorts of stories about retracted stomas, skin that continually breaks down due to contact with gastric juices, all that fun stuff. I wouldn't say that I'm terrified to have a stoma; I think my biggest fear is having an ostomy, and then ending up with little-to-no relief. If an ostomy didn't help, I don't know if there are any other options.

 

Can I do a quick "poll the audience?" Have any of you had to alter your education, or change careers because of your health problems? I ask because I'm trying to finish up the prerequisites for a master's degree in prosthetics and orthotics, but I'm really not sure that I will have the strength/stamina/mental capacity (chronic pain is a brain killer!).

 

Thanks everyone for posting updates! Hope you all have a great rest of the weekend!

 

Allie

Posted 5/16/2010 4:11 PM (GMT 0)
hey Allie, i confirmed your friend request on facebook! it's nice to put a face to a name :o) yeah it seems pear juice has a good affect. i havn't tried the canned pears, but i do drink fresh squized pear juice every morning, cause w/o it i can't have bms. it acts just like a laxative, even better than prune juice. carrot juice makes me REAL nausious. actually, if i drink it, i immediately throw up.. YUCK! sorry.... :/ i'm terrified of having a stoma, and although every dr would say that it's impossible to be constipated with an ileostomy, being constipated for 17 yrs with no relief, EVEN after a total colectomy...... i'm still terrified i'd still be constipated :(   but we shouldn't say that or think that way, we should believe it'll be good. it's really scary, cause there are really no other options after that. about your poll... well i can tell you that my prob definitely stopped my life. it started all of the sudden when i was 20 yrs old (now 37) and i couldn't study at all!!!! i mean i wanted to study and go to university, but i just couldn't concentrate on ANYTHING! i used to be such a good student at high school, but then it all changed and i couldn't understand why i can't listen and remember anything i learned... i kept insisting for a while but then gave up, it was devestating, very disappointing, it made me feel so useless, a failure. i'm still bitter about this, that all of my most vital yrs has been actually thrown to the toilet... literally. i know it didn't stop some of you all on here from building a carreer, but for me it was hard to do anything.
Posted 5/16/2010 4:12 PM (GMT 0)
Hi Hodaya, I had more chocolate last night and more diarrhea. Had to take two immodiums. I need to take the pledge and avoid chocoolate. I gotta get with the program and eat what I'm supposed to whatever that is. Rosemary
Posted 5/16/2010 4:52 PM (GMT 0)
Rosemary, i actually wish my problem was diarrhea for a change LOL and not this stubborn constipation. hope you're better sweets!
Posted 5/16/2010 8:04 PM (GMT 0)
Yeah, Thanks, Hodaya. I do understand. But if you get your ileostomy, take care not to get diarrhea as you lose all your digestive juices. It's dangerous can put one at risk of needing an IV and dehydration. Something I, too, never dreamed of having an issue with. Rosemary
Posted 5/17/2010 1:36 AM (GMT 0)
Hey gals! went boating today and look like a lobster!! You would think I would learn to put sunscreen on! I just always worry about the kids and forget about myself. Did pretty well on the boat, had to come in twice to use the potty but thats not bad at all! I missed so much last year so I have a lot to make up for.

Allie, yes these issues have prevented me from my education also. I was planning on going to nursing school and maybe I still will, but having these bathroom issues does make you put a hold on things. I am lucky because I got married and had children at an early age. I can not even imagine dating or trying to start a family at this time. I am very worried that I will have problems in the future. Especially when I read your profile. It seems like people do well for awhile with the colectomy but eventually have more problems. So far I can keep things moving very well with Miralax and diet restrictions, but I always wonder for how long.

Hodaya, Just love you to pieces my dear!! You and Lizzie and Judy and Janie have kept me going the past year and a half!

Rosemary-any cruises planned?? I think it is so great that you can enjoy your life so much after all you have been through.

Going to go and try to cool down from being burnt so bad!! Love you
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