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Colon inertia part 2

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Posted 6/11/2011 2:24 PM (GMT 0)
Kyle-I am so sorry to hear that. I want you to feel better soon! Please keep us updated.
Nanci-Wow, part of your intestines show through,with all of the pain I would definitely be calling?!
Posted 6/11/2011 2:27 PM (GMT 0)
Mary, The doctors said it's just because of my size. I can actually feel parts of it too. I mentioned it to the doc because it kind of creeped me out whe I could see things going through that part.
Posted 6/11/2011 9:21 PM (GMT 0)
Kyle, SO sorry to hear that hon sad   how aweful for you. a perforation of the anastomosis. hope they fix you up soon. there was someone here who had this problem after her surgery. she did have a loop ileo for few mons, but once the whole thing healed, they closed the stoma and now she's doing great (w/o a bag). so please don't get discouraged. things will get better! stay POSITIVE!

Nanci, i was also very skkiny post colectomy - i was about 103 lbs but never saw part of my intestine protruding through my skin. when you go to the dr, ask him again abuot this and whether it's not a hernia. so sorry you're still in pain, but it's still normal this point post op. for me all the pain was gone after 5 weeks. but it may take a bit longer for some. hang in. hope you feel better soon. let us know how the follow up goes.

Tracy, it is also hot as heck here too and guess what...... my air conditioning also broke mad   gotta fix it pronto!!

thnking of you lots, Trace. your surgery is getting closer and it's a combination of number of surgeries. you're in my thoughts and prayers everything works out best!

i'm doing ok, output is ok as long as i drink my juices and keep small meals and soft-liquid foods. i can't gain that much, cuz i cant eat so much, otherwise i'd feel so bad, but i'm not too skinny. i'm 5'4 and weight around 109, which is not considered underwheight.

my stoma is much better :-)   its amazing, but ever since i started wearing the ostomy belt, it has helped my stoma to stick out significantly and it's no longer retracted. YEAH. and i can hold a wafer for at least 12 days yeah   my skin looks perfect. last wear was 13 days and it's all thanks to the ostomy belt! i'm not even usuing sure seals.

Posted 6/12/2011 3:27 AM (GMT 0)
Kyle, I am so sorry to hear this. I hope that the leak heals quickly with the ng tube and nothing by mouth. Were you awake for the ng tube? I shiver with fear just thinking about getting an ng tube. I am so terrified of that...

Hodaya, so glad your stoma is behaving itself. :) I can't believe you can wear the same wafer for 12 days. I have to change every 3 days because the skin right around my stoma gets burned by my output. I thought it was because the wafer hole was too big, but tonight I had a blow out and was forced to change the bag and the skin was burned as usual.

My doctor told me that loop ileos are notoriuos for causing these issues, and parastomal hernias, and that he thinks I will be much happier with an end ileostomy. I ain't complaining though because my quality of life has improved 100%, even with the leaks and frequent bag changes. I am sure you can relate.

How are you doing with your rectal mucous because I struggle to get rid of mine. I have to use enemas and it takes hours for the water to come out. YIKES blush
Posted 6/12/2011 1:04 PM (GMT 0)
Hi!

Sorry I did not write much the other day.  My tummy is just sooo sore, and I am starting everthing from scratch now on getting my bowels to move.  It takes a lot of effort to move around. 

I don't think I ever had a leak from the anastomic sites, but when they took my ct scan on Thursday it looked like I did with all the pain, free air, blood, and stool in my abdomen.  So, the surgeon told me I was going to come out with a temp. ileostomy after a stat or, but I didn't.

However, after surgery, it turned out the stool was just at the bottom not expelling out due to a stenosis at the rectum.  He dilated that.

Then, him and his assistant did a through exam and just released all the blood and air, which I am left with these j-pouches on the side of my abdomen to keep blood out. 

Yes, they put the NG tube in during my surgery. 

So, I guess things could have been worse, but the resident came in this morning, and I prob. still got a couple more days left of this tube (makes my throat hurt) and TPN. 

I am started to swell up with water weight again.

I need all the help my poor little body can get.  For now, it looks like I will be here all week, but I did pass gas the past couple days, so that is good.

Just taking extra precautions this time.

The surgeon is not sure why I developed all the free air and blood, but there is complications with anything.  He was sad things were not healing right.  Let's just hope each day gets a little better!

Mary-on your surgery date, take things easy, so you can have a speedy recovery!

I love all u guys!

Posted 6/12/2011 1:24 PM (GMT 0)
Kyle,

I have to be honest in saying I know longer envy you. Instead, I just want you to get better and I'm glad you are in the right place for this to be happening. It's a good thing you went back instead of assuming things were alright or going to improve on their own. That sounds like something I would do (wait).

I didn't pass gas until the last couple of days. For the two and a half weeks leading up to that all I could do was say"no" when they'd ask about the gas. Instead I felt like I was in labor with all of the gas pains. Instead of trying to push out air I felt like I needed to push out a baby! The baby days are over for me.

Speaking of babies, my little miss lizzy, is very upset that I am not able to give her a baby sister. I mean VERY UPSET! Two of her cheer friends (sisters) are going to have a new baby brother or sister. She doesn't understand that we just can't have one on a whim. Jeez, I have one already out of the house a 19 yr old in college and one daughter with only one more year of high school - then my little 10 yr old. She actually came home from the gym the other night, went straight to the shower and cried the entire time. Her poor little eyes were so red that i couldn't help but feel bad for her. BUT - no more babies! She actually wrote in her journal about it. Poor thing...

I went on a mostly liquid diet yesterday and trying again today. Just to see if I can clear out my body. I did have to go during the night but that was also due to the M-O-M. I'm thinking I might try switching the the Miralax but not sure if I should wait until friday when I see the surgeon again. He is the one who put me on the MOM.

Kyle, I'll definitely be thinking about you - my kids and husband are all aware of your situation if that makes you feel better. ;-)

nanci
Posted 6/12/2011 1:25 PM (GMT 0)
Kyle, so glad to hear from you hon! i'm sorry but i didn't get it, did you or did you not have another surgery? so sorry you're in so much pain. the ng is a nightmare, i know... hang in there and keep your faith, hopefully it's just a set back and everything will work out great for you. don't let yourself get discouraged, k?? thinking of you lots!

Tracy, i have no doubt that once your hernia is fixed, it'll be much easier for you with the wafer. are you using adapt rings or eakin seals? those are a MUST esp with loop ileos. w/o adapt rings i'd change every 4-5 days.

the rectal mucous is a PAIN!!! i should do an enema once a week to be able to feel comfortable, but i just hate doing enemas. doing an enema is a huge project for me, so i always put it off till i reach the point i feel it will all explode down there if i dont do the enema :( but even tho it's hard, it's NOTHING compared to the way things were w/o the stoma. i'm VERY thankful too for having the stoma :))
Posted 6/12/2011 3:50 PM (GMT 0)
Kyle- I hope you are feeling better soon! I know it's a bummer to have a setback, but what a relief that they figured out what the problem was so quickly. Take it easy and get LOTS of rest...and only eat what/when you feel like.

Nanci - I had to laugh when I read your post...when I was around Lizzie's age I was begging my parents to have another kid, sure, I had a little brother but I wanted a sister! But now at my age (24) I am SO GLAD they didn't. I know you feel bad for her but don't worry, she'll eventually realize how lucky she is to be the last one :) I hope you are feeling better!

My parents have been out of town but they really want to sit down and look at everything before I pick a surgeon for my second opinion. We have one in mind but I understand they want to read up on her as much as possible. I did fax in some forms to request ALL of my records from UNC, just to keep in my files so I can go through it all and read all of the reports from the tests myself. I have been feeling extra awful the past week because it was "that time of the month"...I take the pill because I have such painful periods (I've been told I likely have endometriosis or something) my stomach/back/bottom hurts, and I get TERRIBLE rectal pain. I mean it hurts to sit, walk, cough...if I wasn't on my period I would've gone to the hospital because holy cow. I started a new pack of pills but I'm still waiting for the pain to go away.
Do any of you ladies have trouble with your periods? I don't really know what to do about it except keep taking the pills and skipping the placebos like my doctor told me to.

I was also reading the other day about a "tilted uterus"...if it is tilted backwards it an rest up against the rectum and cause pain in that area during your period, I am not wondering if maybe instead of pelvic floor issues, maybe my uterus is just pressing on the rectum? It is unusual but definitely possible! Who knows...but I am definitely asking my gynecologist about it next time.

Hopefully I will pick a surgeon soon and get an appointment set. I am so uncomfortable I just can't stand it, and I think I'll feel worlds better if I just have a plan for surgery.

Happy Sunday everyone
Posted 6/12/2011 4:28 PM (GMT 0)
Hi to all of you! 

ali - Ive been wondering how you have been since we have not heard much from you recently.  A couple of things about your monthly problems; I didn't know (or maybe it wasn't always) that I had a tipped uterus until after I had my children.  I know sometimes people have problems getting pregnant due to the tilt but I never did.  Especially with elisabeth - planned her to the minute pretty much.  Most people think she was an accident but she couldn't have been more planned.  We (I) decided I wanted one more (Haley begged) so I had a physical (since I was 31 and thought I might be too old for another one) to make sure everything was in order.  I went off the pill for a couple of months then I had to go away for work for 2.5 weeks.  The night I got home was the last night of the "window" so I didn't even remind Ron (didn't need the pressure) and next thing we knew - pregnant! 

 

I had endometrial ablation to get rid of over an inch thick layer of tissue lining my uterus.  It can help with endometriosis but it's not something you would want since I'm sure you want children.  Basically they burn it off at a low temperature and it doesn't (in most cases) grow back.  The bad part - no kids since it is smooth and nothing adheres to the walls.  I also had cystocele and rectocele repairs during the same surgery two years ago.  The doctor was not sure if the problems were do to childbirth or the chronich constipation.  I wouldn't be surprised if it was the latter since the rectocele seemed to be returning.  I was scheduled for my annual exam on 4/28 but that was back when I had the lumbar puncture and then bloodpatch.  I couldn't get off the floor on my appt. date w/o vomiting so had to cancel.  now I am scheduled to go back to her on 6/20.  gee, can't wait...  Have you actually been diagnosed with endometriosis?  I would really have your gyn. check into it because you definitely need to know.  I know that's probably not currently at the top of your "to do" list but your next annual...

 

Hodaya,  It's almost been a year since your loop ileostomy.  I know you don't really need reminded of it but I saw the date.  I can't imagine what it must have been like to find out you needed it but it sounds like it was the best move toward happiness.  Wow, who'd imagine that except for those who go through this.  If I ever need to have the procedure, you will, once again, be the go to person.  We all look up to you since you are a fountain of knowledge and experience.  Even my husband doesn't ask "who?" anymore when I say your name.  At first he thought I was talking about Hoda Kotb. 

 

Mary, just another couple of weeks.  Remember to eat your favorite foods the few days before surgery.  My husband made fun of me because I was drooling over the Mrs. Renfro's salsas at the store the other day.  They have Mango Habanero Salsa, Tequila Salsa, Peach jalapeno and many others.  It's the mix of sweet and fruity with the flaming hot that is so incredible.  Funny - I was just rereading what I typed and I had mistakenly typed 'sweat' instead of "sweet."  Yuck!! mad

 

Kyle - any idea when you will be out?  Look at the bright side of things...at least you were still up north closer to the hospital instead of back home and far from your hospital.  Did you get your COBRA set up in advance?  My statement came the other day for $54,000 - Thank goodness the payment due was $0.00.  I will never complain about my monthly share of my medical insurance.  My next step is supplemental disability insurance because I don't have disability through social security.  I work for the railroad and pay into Railroad Retirement instead of Social Security.  When I retire that will be great, but right now some money would be nice.  Especially since my son's college tuition statement came yesterday.  I like how they act like a loan is financial aid.  We didn't catch any breaks. 

 

blah, blah, blah...

 

have a great afternoon/evening to all of you!  cool <-  i wish I needed those sunglasses - rainy and 54 degrees here. 

 

 

 

Posted 6/12/2011 10:24 PM (GMT 0)
Wow so much going on. Kyle- I know you don't want to be there but it sounds like the best place for you. I hope you start feeling better!!! Nanci-You are a liquid diet again?Are you calling the surgeon tomorrow? Ali-Definitely a good idea to get your own reports.Also, I had a retroverted Uterus but pregnancy fixed it:)

I am really nervous about surgery now. Any tips? I know everyone's recovery is different but I am scared with all the complications that I have read on here.

Posted 6/12/2011 10:56 PM (GMT 0)
Mary,

These are all minor, not major considering all we have gone through BEFORE the surgery. I am torn about calling because I really can't make it in there before Friday. I know it sounds stupid, but I really can't do it before then.
Posted 6/13/2011 12:09 AM (GMT 0)
Good point!
If anything changes and it gets worse please go in though. Don't take a chance!
Posted 6/13/2011 12:13 AM (GMT 0)
Ali, yeah, that's a good thing to get coppies of all your records. i always keep every test result, every hospital report etc. very important for lots of reasons, like going to a second opinion, insurance and social security can ask you to bring all your medical file etc.

i have lots of pain during my periods, but i don't think like yours. i don't know anything about this subject, esp the terms in english about medical issues other than the bowels lol. it's like chineese to me.... hope you get this figured out tho. i wish you the best of luck picking up a surgeon and moving on with your decision.

LOL Nanci..... who in the world is Hoda Kotb?????? :D you're too funny, girl! i'm glad to help just how much i can. i don't know it all, but glad to help with what i do. and i hope you don't have to go the ileo route, not any of you. i hope the surgery works out great for you all!

yeah it's been 11 mons since my ileo op and i DO feel blessed and thankful that still there is a way out for ppl like me. if i had known that how it'll end few yrs ago, i would have said i'd rather die. but it's SO not the end of the world and i'm so very happy with my bag. yes, when i first realized that's my only chance to feel better i was devastated! i just cried day AND night for mons..... gosh, it was a crisis. but after surgery, after all the healing part was over, and i was able to see how good i feel with the stoma and how it makes my life so much easier..... i then just fell in love with my stoma and just couldn't be more thankful to have it. i love my squirtie ;)

Mary, i can understand you're stressed about the surgery, but let me tell you this, none of the dozens of girls who had this surgery for CI has ever regreted having the surgery. it wasn't all success and some have less success than others and some still struggle lots!! but still, for all of us it only got better after surgery, not worse.

thinking of you all. hope to hear some good news from you, Kyle. hope you're ok. love you all much!
Posted 6/15/2011 1:29 PM (GMT 0)
Thank you Hodaya!

Kyle-Please update us when you can.

Posted 6/15/2011 5:17 PM (GMT 0)
yeah i'm starting to get worried about you Kyle. really hope to hear from you soon.
Posted 6/15/2011 7:33 PM (GMT 0)
Got my records today, everything looks right. One thing that is bugging me though is that in the paperwork (and I sort of remember going over this but not really) it said something like, "Surgeon explained the possibility that surgery would not relieve the patient's symptoms of bloating, gas, and abdominal discomfort..."

Now I understand surgery wouldn't make everything perfect...but those are my main symptoms from the slow transit!!! So why would I have surgery unless I was trying to relieve those symptoms?! I keep getting so confused and wondering how I will EVER know what path to take with all of this. I know I can't keep going on like this, but it just stresses me out mentally. Sometimes I feel like both my head is going to explode.

I also contacted my doctor with the name of the surgeon we chose (Dr. Thacker) at Duke, and she said she would submit my referral and records for me.
Posted 6/15/2011 8:20 PM (GMT 0)
Hi everyone!

I am sorry I have not responded.  It sure has been a rough week!  I am ready to get out of this joint!  Hodaya, when I met a stat or, yes, another surgery. 

Today I just now got my j-pouches out from the side of abdomen, and my ng tube out.  Such a relief to have that out.  It was really hurting my throat and ears.  The doctors are sure taking there time with me this time.  I have just been hurting a lot in the hospital, and tired of all these tubes.  I did start to yellow liquidy bms yesterday and today I have had small leaks.  So, hopefully things will keep moving down there.  On clear liquid diet right now, and cycling TPN's.  Maybe things will change here in a couple days, but I still don't know when I will be out of the hospital right now!

I miss all of you very much, and I haven't forgotten you; I just haven't felt good! cry

Nanci-yeah, my cobra came in the mail, and should help me out this visit. 

Posted 6/15/2011 8:53 PM (GMT 0)
so glad to hear from you dear Kyle! you don't have to appologize at all! we all understand how much you're going through right now. we're all so concerned about you. i'm so glad you're off of all those nasty tubes yay! what does your surgoen say? has the surgery helped fixing the problem? (still don't quite undestand what exactly it was).

good thing you're starting to have bms. how's your pain now? is it better? we all miss you lots too, hon! and we all hope things start to get better for you towards complete healing and successful outcome. many positive thoughts and prayers your way! hang in there!
Posted 6/15/2011 9:01 PM (GMT 0)
Alibee, good thing you've got all your records. don't stress to much about that note the surgeon wrote. they always say it, but it's a fact that everyone has relief from this surgery. just as i answered Mary (look couple of posts back), this surgery is not a magic fix, true, but none of us regrets having it and would do it all over again if we had to. there's no point in leaving a non functional colon inside and taking it out DOES give relief. even i could feel the felief, and i have the most slow small intestine compared to everyone else who had the surgery during my time of havng it. read back and see for your self how everyone say that even with all the set backs, they still feel so much better than before surgery.
Posted 6/18/2011 12:32 PM (GMT 0)
I went to the doctor yesterday for my post-op follow-up. He wishes I was doing better and going on my own (w/o m-o-m) but said he'll see me in one month and do testing if I still have any problems. Of course I will go back sooner if things get worse. I am scheduled to return to work on 6/27 as long as I am feeling up to it. Otherwise he will extend my leave. Financially I need to go back but I work 10.5 hour days and if I was scheduled to go back tomorrow I would definitely not be able to do it.

Kyle - How are you? Are you out yet? I hope things are improving for you.

Ali - what's up with you? Any luck with surgeons, your mom, etc?



nanci
Posted 6/18/2011 4:44 PM (GMT 0)
Dear Kyle

Sorry to hear that you have complication, hope you can solve it asap and please give me your update status.

I am in Asia now and plan to see the G.I. doctor on July 2.

Dear Fitgal

Glad to know that you plan to come back at work soon, hope you can heal asap.

Please give me posted.

smarty

 

Posted 6/19/2011 9:01 AM (GMT 0)
Nanci, can you go back for half day at least for the first 2 weeks? i don't think it will be a good idea to start with 10.5 hrs right from the start. just doesn't sound right to me at all. you have to progress slowly and gradually.

what kind of tests does your dr want to do?
Posted 6/19/2011 11:19 AM (GMT 0)
Good morning everyone!

I saw your comments on fb, thank you!  Yes, I was discharged on Friday, and I am home!!!!  I am sooo happy to be out of there.   :-)   The hospital was basically my home for 2 weeks!

This last hospital stay was so rough for me; having the NG tube down me, the little j pouches dangling from my abdomen, another surgery in such a short period amount of time making my tummy hurt even more.  Just lying in there bed; it was rough!  Wednesday is when I got all my tubes out of me, and I started to have bowel movements.  They still have continued, and the doctors started letting me eating some solids on Thursday. 

Food is fair right now-def. keeping a food journal and trying to chew, chew my food.  Last night, I ate half of some pasta, hour and half later, warmed up the other half, and chewed very slowly to finish it.  I was full.  It is going to take some time on this.  However, I am still going to the bathroom.  Good times better than last time from being discharged.

One other thing, the hospital really worn me out this time.  I am very weak and tired.  I really have to try and rest and work hard on bringing strength back up.  I don't think that doctor's meant to wear me out soo much, but there was nothing else to do because I had complications.  

I asked the doctor again; why do you think this happened?  It is weird!  They still aren't sure why, the way he explained, some blood vessel bursted in my abdomen from the 1st surgery filling my abdomen full of blood.  He said there are prob. an half liter of blood in there!  Also, I just hope my rectum doesn't narrow again.  I want to on the road to recovery, health, happiness now, but I know it will still take some time.   

Nanci-I sure hope they can figure it out what is wrong!  I hate it that you still have to take mom.

Posted 6/19/2011 12:56 PM (GMT 0)
Wow Kyle you have been through a lot too. I hope it is all uphill from here! Any words of advice or encouragement?
Posted 6/19/2011 8:25 PM (GMT 0)
so glad you're home Kyle! gosh you had a rough time :( as Mary said, hope it only goes uphill from here!

i think you need lots of protein now, cuz when going to surgery in low weight, the tissue is not strong enough and can burst easily. protein will heal and build your tisseus and will make it stronger and that's exactly what you need right now. there are protein shakes you can drink to give enough protein. i don't know how it is called, i never needed it, but other ostomates do and if you post it as a new topic, they'd be glad to help you.

so it seems what happened to you had nothing to do with what or how much you ate, but still, keep it slow with food anyway. it is normal to feel so weak, but your stregth will gradually come back. i was very tired and got tired easily 6 weeks post op. and even after that, even tho we may feel we're back to our own selves, the complete healing is only 1 yr after surgery.

please ask your dr about protein shakes (ask both your surgeon and family/internist dr - i'm not sure which one). keep healing well! :):) blessings your way!
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