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Total Colectomy part 26

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Posted 10/4/2009 8:30 PM (GMT 0)
Hi everyone....

Well goodness, i went back and ready my typos from my last entry. I had just taken my sleeping medicine not long before!!! It was almost as bad as my entries when I was on drugs in the hospital. Anyways....I am doing ok. I have really had a week from hell. I just found out yesterday my brother and his wife are losing their baby. She is 19 weeks and the baby is full of fluid. She has to deliever on Wednesday and they live about 4 hrs away. I wish I could be there for them, but I have surgery the next day and right now she does not want to see anyone.

I did get out for some polish festivities. I am still having nausea everytime I eat anything. I have thrown up twice today after meals...I am just not sure what is going on. My belly gets distended still, big gush into bag, and then vomiting. But my test showed my small bowel was ok and they stuck their finger in my stoma and said it was not narrowed. Just nervous this may affect my recovery.

Janie, I hope you get things figured out. I feel so bad for you....dealing with someone as arrogant as your doctor sounds is just as frustrating as dealing with the disease. I wish I would have done something sooner in regards to his nurse...its so much easier now. I think you shoudl definately see another surgeon. I have seen four....and I do not regret it at all. I had to drive 5 hrs to Cleveland and it sucked, but it was worth it.

Hodaya, How are you feeling honey????

Jen, I have had pleurisy and it sucks. I am glad you are feeling better and you have to get stronger for surgery. I am praying all goes well. Thinking of you.

Jenise....I was frustrated too, but glad he was being thourough....Please keep us posted. I hope all goes well and they can decide the best way to approach all that is going on.

Judy- Thanks for always being so kind and caring so much despite your own struggles.

Hope the rest of you are doing well...welcome cyclemaniac and good to hear from you rosemary.

Lizzie

Posted 10/4/2009 10:30 PM (GMT 0)
hey all, Judy, thanks. we don't have miralax in israel, but i tried taking a laxative and it didn't do anything for me. so after 4 days of horrible constipation and chest pain, i went on clear liqiuds all day today. it helped some, but im gonna have to continue for at least few more days if not forever. well at least till i feel it's really clearing up. it seems i'll have to be on a soft diet most of the time in order to feel o.k. all in all im o.k. at least now liqiuds help, as oppose to prior to the surgery. Shawn, his family and friends and your daughter are in my prayer. Jen.... OMG! i'm worried about you! i hope you get all better before surgery. you must mention this at your pre op appt, so that maybe they need to take a precaution, like they did with me, cause i have Chronic obstructive pulmonary disease (COPD). though i wasn't sick prior to surgery. please take good care of yourself. keep us posted on how you're doing. i'll be praying for you. Janie, good luck on finding the right dr! i'll be praying you find the best one for you! it's SOOOO important to have a compationat dr. when you have a compationate dr you automaticaly feel better! Lizzie, i'm SO sorry about you brother's baby. it's so sad. i'm sure you feel so bad for them. i'll keep them in my prayers. i'm thinking of you as your surgery is approching. i'm happy and excited for you. my mom said your vomiting can definitely be from stress. she said she once had stressed about something and couldn't stop vomiting for a month and a half. i hope you feel better soon. well off to bed. g'nite all (((HUGS)))
Posted 10/4/2009 10:38 PM (GMT 0)
Hi Cyclemaniac, just wanted to say welcome, and sorry that things aren't all good days! I know some people form adhesions more then others, myself - thankfully, doesn't seem to be in that group and I have had 4 abdominal surgeries!

Well, I have another update - my surgery has been canceled at this time. I really am 100% fine with this, as I think in the end - I will hopefully get the best results! My case was brought before a group of doctors in a pelvic floor conference.. how good is that!? So far, I really don't know what exactly is going on, but my surgeon said that I need to have this MRI, so that he and my other doctor can review everything, so that the I would address everything at once. I can't ask for anything more... I feel like I am in great hands, and that they are looking at everything! Again... as a reminder, I did suffer from a very traumatic childbirth injury, no doubt destroying some pelvic floor muscles. Nurses at the time said they never saw anything like it - and I guess, 20 years later it is revealing the true extent. Anyway, I'm going to relax now.. enjoy my cruise, and not give it another thought (well - I'll try not to!). I may find out more on Friday.. but for now, surgery is on hold!
Posted 10/5/2009 3:53 AM (GMT 0)
Hi to everyone - tinkerbell, Judy, Jenise, Lizzie- I am really nervous. I am no longer working, as of 2 wks ago (I am a nurse), and next Friday have a final surgical appointment with the colorectal surgeon to go over consents and to ask any last questions, then to the anesthesiologists to get cleared for surgery. Then on Oct. 13, drink the Golytely which is putred, I am afraid of vomiting from it, then on Oct. 14, get to Richmond Va medical center in the early am for the total abdominal colectomy and ileorectal anastomosis. I also have a right pleural effusion and loculated fluid around the liver, so all of this will be addressed. I had ovarian cancer 3 yrs ago- so right now I am really nervous and trying hard to stay busy, sleep, eat, gain wt- drink Nutrament. I know you have all been where I am, but it is hard to be here - alone- I have a puppy, and a few friends, the Lord,  but no family, boyfriend or husband. Will have to Cobra my health insurance till I am well enough to work again, so I am feeling alot of stress. If there is anyone on here who has some free time to talk with me, please let me know. I will try to put my email address on my user name. Thanks, Shmuel's mom
Posted 10/5/2009 4:06 AM (GMT 0)
Schmuel....

I always have time to talk....I am off work until I go into surgery Thursday. I am on clears again starting Tues afternoon. Do you have a facebook...some of us ar eon their and you can chat by instant message on there. My email is also in my profile. Feel free anytime....

Lizzie

Posted 10/6/2009 4:29 PM (GMT 0)
Hi girls!! Just trying to stay warm here. The high here has been 40 or lower for the last week and It has been snowing. Brrrrrrrrrr!! I told my hubby we really need to move somewhere warm. Any suggestions? LOL

So has anyone found any good info on why we still get constipated? It just does not make any sense. I had a terrible day on Sunday. Could not go at all. So I tried a suppository and that just made it 10 times worse. I was in so much flippin pain. And my parents were here and I spent the whole time stuck on the potty trying to go. ***!! I just dont get it. You would think that since your colon is gone that things would just right through you.

Hey Lizzie I was going to ask you if you still have back pain? Cuz I have had a lot lately. Is it connected to the surgery? I am nervous for you for thursday. And you are definetly in my prayers.

Jaine I seriously know what you are going through. I had the same kind of doc for a while. Until I started crying and swearing at him. Why do they always think we have eating disorders? Just because they like to eat and it does but them in pain. If they only knew!!

Well better go. At work again!
Love you all!

Marisa
Posted 10/6/2009 4:38 PM (GMT 0)
Marisa-

Yes, I still do get back pain all the time. I saw a chiropractor earler this yr when my back just went out at work. He said with all of the tension ove rthe years and my hx as a gymnast he could not believe I had not come in sooner. I was crooked as crooked can be. I feel better at times, but I still get horrible pain and have muscle relaxers for it. I never had it before my bowel issues. He said the nerves along where I was having so many issues are all tied to your gut. He also straightened my sacrum which he said can hinder people from going to the bathroom as they should.

well, I am super stressed for Thursday. I start clears right now...and I am kinda excited about that. I tried to eat dinner with my in-laws and ended up projectile vomiting. I am still holding at 104-105.5 so that is still good, but everyone says I look worn out again and I am....I have not had any of thos loose stools I was having in three weeks. I still feel the urge to go, but I am so afraid of being hooked back up and ending up sicker than I was and with a permanent ileostomy. I just dont "feel right" inside, but I am hoping I am wrong.

Forum has been quiet. Hope everyone is ok. Miss you all and need your prayers.

Lizzie

Posted 10/6/2009 4:39 PM (GMT 0)
Marissa,

You could always move to sunny FL!! Nothing cold about our weather....and the best is just starting for us...finally out of the 90's and getting really nice now. Where do you live??

I don't understand about the constipation either. It makes absoluteluy no sense. Where is your pain? In your rectum, or do you feel like the food is still stuck in your intestines?

I'm doing another sitz marker test this week, but have no idea how accurate it will be, I've been drinking prune juice every day, and some days twice. It's the only way I get any relief, and I just cannot stand the pressure after eating if I don't go. This truly just stinks.

I went online and submitted an application for an appointment with Cleveland Clinic in Weston. It will be interesting to see how long it takes. I won't have my defogram until October 22 and results when I got back to see the jerk on October 29...but I figure it will probably take a long time for an appt. We'll see. What does your doctor say about your continued constipation?

Lizzie,

Praying for you sweetie. I'm sure you're anxious, but I'm so happy you're finally going to get a chance to get on with your life. Sending lots of positive vibes your way!!

Everyone else,

Hope you're doing well. Gotta get back to work myself!

Janie
Posted 10/6/2009 4:49 PM (GMT 0)
Hi Marisa,

Just trying to help you figure out your continuing constipation without a colon. Do you have a stricture (narrowing) where the small intestine was hooked to your rectum? Have you been tested for pelvic floor muscle/nerve issues that can create a problem with getting stool out even though it now likely sails right through you without a colon? Two types of constipation I've learned of (transit - colon related problems) and outlet obstruction problems (getting stool out once it reaches the rectum.)

Best wishes,
Sincerely, Rosemary
Posted 10/6/2009 4:58 PM (GMT 0)
Janie, I am soooo pissed about your doctor. We DO NOT have eating disorders. I ate onion rings Sunday and it made me very sick for over 24 hours. All I could eat yesterday was soup...do I have an eating disorder? Heck no! I am so tired of these doctors not listening to every word that we say. They take part of a conversation and run with it. You weren't saying you couldn't eat, just that you couldn't eat like you wanted to eat. What a jerk I am really trying to be more proactive when it comes to my care. We pay them for their service and this service includes treating us with respect. Find another doctor. I am!

Matter of fact, I see my new colorectal doc this Friday and I am very excited about it. I know this is so stupid, but, I imagine he will have all the answers for me and it will be a miracle and I will be cured.  How dumb is that? But I can't help it, I am just so hoping for some answers...even if it is a temporary ileostomy.

Lizzie, I feel so bad for you. I can't even begin to imagine how scared you must be. Are you still pooping normally? I hope this is going to work for you..Good luck!

I am still the same...can't poop. I am so tired of living like this...I know it isn't terminal cancer, but this problem is so life altering. I spend hours and hours thinking about what I need to do to have a better quality of life. UGH I just pray the new doctor has some sense and can help me.

Talk to ya'll later, I have to head back to work. Tracy

Posted 10/6/2009 6:22 PM (GMT 0)
hey all, i feel so bad for you Marisa :( i agree with y'all, it just SUCKS to STILL be constipated after having your whole colon removed!!!!! well i got constipated too and it kept going for 4 days till i decided i'm going on clear liquids. i was on clear liquids for 2 days. it helped a lot. now i'm on a soft diet, which means i eat an homlet (sp) of 2 eggs in the morning, cooked and peeled carrots and zuccini and put them in a blender for lunch and tuna for dinner, during the day also cooked and peeled peaches and LOTS of sherbet. pretty boring, but it's the only way that keeps me going. maybe i'll try to add mashed yams later. ptatoes and rice plug me soooo bad i can't eat them. dairy gives me major heartburn... mmmm... not much food in the world is left for me to eat :( i do have rectum issues for sure, whether it's a prolapse or rectocele.. i don't know, it does feel like a rectocele, like when i'm trying to push it down it goes towards the vagina instead and not coming out... it's SOOOOO frunstrating! but i won't be able to have any tests done till at least 6 mons post op, so i'm trying to manage with the soft diet for now. Janie, i wish you the BEST of luck with finding the right dr! and BEST of luck to you too Tracy with your new one. Lizzie honey, you're always on my mind as your big day is approching. i AM concerned about your vomiting. i hope that once all is over you'll be able to relax. you're in my prayers. Jeinse, i'm happy for you that you have this great team of drs working on your case. my case was also presented in front of a great team of drs, some of the best in israel and i felt very fortunate to have them helping me. Jen, how are you doing? are you still sick with your lungs? i hope it gets better soon. you must be strong for your surgery. Judy, i'm sure you're keeping busy and that's great! hope you're well. love y'all lots!
Posted 10/6/2009 10:51 PM (GMT 0)
Hi all...

Just one quick question. do you think ita a bad sign that my poopong i was having even with my ileo is a bad sign? I am still having urges and all the tests were ok??? Just curious. I am on clears and feel good today, just irritated and I do not know why. I hope the stools going away has just been stres/vomiting. I am so scared reading all of your posts that I will be hooked back up and so sick again. I cant imagine it again and it is eating me alive right now. I hate my ileo, skinbreakdown, and having a bag, but i also hated not pooping and i obstruct easily so I am just so scared.

I wish all of you the best in your tests, new drs, everything...think if you all daily. Wish some of you were closer right now, i need someone to understand my fears.

Marisa..its also been very cold where I live. It has been in the 50's and rainy and they projected snow in the forecast soon....YUCK. Not ready for winter and all it brings. I live in Michigan by the lake...so we get the lake effect weather.

Love to you all.

Lizzie

Posted 10/7/2009 12:16 AM (GMT 0)
Hi Girls,

Trying to read up on posts, looks like a week when all of us are constipated.  I was up the night before last most of the night due to being constipated but it was my fault, I ate a skinless hot dog again; the last time I ate one I was super constipated also. So no more hot dogs for me!!!!!!!! I took a couple of doses of miralax and it finally worked throughout the day yesterday.

We had calling hours last night for Shawn and his funeral today.  The minister did a great job with the service.  He talked about how couragous Shawn's Mom was to share him with all the people there when because of his illness she could have sheltered him in a bubbled but instead let him touch so many people, and that he did:)  There were so many young people there that he had worked with and many of his nurses and aides too. 

I've been having some kidney pain & bladder pressure so my dr order a new spasmodic & a urine culture, hoping nothing is up. 

Lizzie-You are always been in my prayers but right now I'm especially praying for your dr and you.  I pray that you can stop vomiting and find peace so that you are comfortable with this surgery.  May you trust the hands of your dr to fix your body so that you will no longer have the bag. May your dr be able to perform this surgery without complications.  May you heal, Lizzie, with the least amount of pain as possible and as quickly as possible.   Please know that I am always thinking of you and I'm right there with you, even though I'm not there physically, I'm there emotionally and I'm holding your hand every step of the way.  I love you!!!!!!!

To the rest of you, I'm sorry you're all having such a "crappy" time with things; I will try to write to you all soon.  I have a ton of school work to do and I didn't do things because of the funeral so I need to catch up. 

Hugs and Love to ALL,

Judy 

 

Posted 10/7/2009 12:23 AM (GMT 0)
Lizzie,

I just reread all these posts. If I'm right, in 2 days you have your ileostomy takedown and get rehooked. Though you have this vomiting issue, all your tests indicate no small bowel or stomal obstruction, so what did your surgeon say was the cause of the vomiting? When I had my adhesion small bowel obstructions I had the projectile vomiting. Stomach flu vomiting isn't normally projectile. Do check with him on this. He may find some adhesions while he is in there and take those down. Ask if he uses any adhesion barriers to prevent new ones. Opinions vary so much, but if it's open surgery, Seprafilm can be used, and so far anyway, has worked for me. If I'm keeping up with this forum correctly, you are the one who had a cure of anismus and that is why they could take your ileo down (?) My ileo is permanent until the end of time (luckily I have a good appliance fit and so on so skin is OK). I wish you well, and I'm concerned for you. Winter on the Great Lakes on top of all this, oh, my! Best wishes, Sincerely, Rosemary
Posted 10/7/2009 12:33 AM (GMT 0)
Tracy, Hope the doc this Friday is "the one." Best wishes, Rosemary
Posted 10/7/2009 12:44 AM (GMT 0)
Hi all,

Lizzie I am praying for you.  I know you are worried but hopefully the surgery will be a success and things will be better for you.  Stay strong! 

Hodaya my pleurisy has cleared up but I am not feeling well.  I took all my laxatives Sunday afternoon and went to the bathroom Monday some but I am already blowed up.  Also my lower back is killing me.  I think some of it is PMS, that always wreaks havoc on my bowel issues.  I just decided to take my laxatives again even though I probably shouldn't have.  I just feel so bad and I am so tired of this.  I cannot wait until my surgery date.  I am soooooo through with living like this.  Even though things may not be perfect after surgery they have to be better than how I am living now.

Sorry everyone's not feeling so great.  Hopefully things will get better. 

Jen

 

Posted 10/7/2009 1:01 AM (GMT 0)
I am also nauseas and miserable tonight. 3 doses of miralax has produced only the tiniest bit of poop and I am SOOOOOOO MAD! My stomach looks like I am 5 months pregnant and I have to take zofran for the nausea, which sometimes gives me a headache. I just want to be normal. Is that too much to ask?
Posted 10/7/2009 1:05 AM (GMT 0)
Hey Janie I would love to come to florida. We were actually there in Feb. of 06 and it was beautiful. We went on a cruise to the Bahamas and ended in Key west. We also went to Miami. It was the best vacation I have ever been on. Besides the fact that we had no kids with us the weather was great when it was anywhere between 0 and 20 here. I felt like the Jamaicans on Cool Runnings getting off the plane in Salt Lake City!!

Anyhow, well my pain when I get constipated is in my rectum. It just cramps so bad. And it feels like it would feel better if I just had a bm but the more I try to the more pain I have. And I can feel pain in my abdomen also when I bear down. Any of you experience this? Its just so exhausting. All of this.

I cant remember who ate the hot dog but it kinda made me laugh because I had that same experience with pizza and I will never and I mean never eat pizza again. And I have not tried a hot dog yet and I think I will definetly stay clear from the weinies for now!! LOL

Tracy-Good for you for getting another doc. Thats what I had to do also. And my surgeon was so great. Definetly worth the wait.

Christy, hope you are well have not heard from you lately.
Judy, I think I missed what happened to Shawn. What happened? I am sorry you have had to go through a loss. I have been there with my brother and its not a very nice place to be.

Rosemary, I have not had any of those tests you mentioned. I have had a ct scan to check for Chrons and that is it. Idont want to call the doc, because it will just mean more tests, more drinks, more people prodding around my butt, and you know the drill. I am just dealing with it the best I can. Probably not the best thing to do but I am done for now!

Lizzie-Wish we could all be there for you waiting to hear how things went. Be sure your hubby can get on here and let us know or on your facebook page. Whether you like it or not we are all part of you family now!! No matter how crazy we are!! LOL!

Love ya all!
Posted 10/7/2009 1:07 AM (GMT 0)
Hi Tracy,
Just looked back at the part 25 posts. When I had the gastrografin enema it didn't hurt at all. I didn't allow them to inflate the retention balloon inside my rectum as I told them my rectum was so scarred it it would cause an issue plus not to worry that any gastrografin would leak out due to the scarring. I also made them use a foley catheter tip to instill the barium. They had this tip lined up that was quite large, I just said, that's ridiculous, use a smaller tip so they did. The technician was great and just let the gastrograffin flow in SLOWLY. THis is the whole key to not having the thing be a nightmare. The slower they put in the contrast, the less cramping. They also slightly warmed it for me so it would not be cold, that also causes cramping. It just felt like a normal enema. They got just as good pics as if they had used barium. Had I had this test PRIOR to my disaster surgery that left me all internally scarred and necessitate the ileostomy, they would have seen that I did not have a redundant sigmoid colon in the first place, so would not have had it removed. (You know the whole story about the misdiagnosis of the sigmoidocele that wasn't I found out about in 2008 from review of the pre-op the defecogram). SOOOOO, I of all people am in favor of gastrografin enema xrays. The beauty of gastrografin is that it will give you diarrhea no matter what issue you have going on. Even cleaned me out and my rectum was about scarred shut. SO basically, just talk to the radiology doc and the technicians PRIOR to the test and tell them what you need. I even wrote to the radiology doc ahead. He called me. I expressed my concerns and he came up with all the solutions. This was just my experience. Rosemary
Posted 10/7/2009 1:17 AM (GMT 0)
Hi Marisa,

This is a happening forum tonight we're all on here. I TOTALLY understand why you don't want more poking prodding etc. Would be glad to fill you in on the pelvic floor, rectal nerve, muscle function tests sometime when you're up for it. I don't blame you for wanting to take a break. Put up a post, if or when you want the info and I can give you specifics. I have way more knowledge/experience in butt anatomy than I ever wanted. LOL

Best wishes, Rosemary
Posted 10/7/2009 1:34 AM (GMT 0)
Wow, busy night!

Judy,
I haven't eaten hot dog yet, but I'm with Marisa, pizza is definitely a no no for me. It stopped me up like crazy.

No, it's not too much to ask to be able to poop normally. I'm sitting here with my 5 pound puppy watching her poop more in a day than I do, and with so much less effort...that is just not right!!

Just wanted to check in and say hi. It does sound like it's been a bad week for alot of us; I've been drinking prune juice every night because I'm doing the sitz marker test. I wonder if prune juice will mess up the results? Without it I'm not sure I'd go at all. Between prune juice and my coffee drink in the morning, I've been going some every day. The markers will probably all be out, but I 'm just not sure if that will be a true result or not. What do you all think? My dr. said prune juice was ok to drink, but it's the only thing really keeps me comfortable.

Jen,
Even though surgery wasn't the complete answer for me, I don't regret it for a minute. I least (for now anyway) I can get things moving with juices and enemas, which never worked before. I know exactly how you feel and only those of us who have dealt with it can truly appreciate how it totally rules our lives. I hope your surgery will be a complete success. Remember, it's mostly those of us with issues who are still around....so many have had this surgery and it's been a complete success and they just go on with their lives and they're not here posting about how great life is now....chances are you'll be one of them!!

Good night everyone!

Janie
Posted 10/7/2009 3:26 AM (GMT 0)
Hi Janie, Judy, Lizzie and everyone else on this forum. I feel really bad for all of you that went thru the total colectomy and are still constipated, especially constipated with nausea. If you are nauseated it is really hard to get thru the day, especially keep a job, that is my story. Lost my job one week ago. I pray that after my surgery- Oct. 14 - total abd. colectomy with ileorectal anastomosis, the nausea and constipation are gone. My doc told me something about a 50% chance. I am praying that they don't find any cancer, can clear up any adhesions and easily attach the ileum to the rectum. I pray that I can get thru the go-lytely without vomiting the night before, and that when I wake up with the ng tube, I don't get all anxious. My friend- a nurse I worked with, will be there with me, and I will think about all of you who have done this before me and survived. I bought some tostitos yesterday at wal-mart and tried to eat them, got really nauseated. So no more of those. Had my nutrament tonight. Thanks for posting everyone, have a good night. Shmu'els mom

Posted 10/7/2009 3:41 AM (GMT 0)
Best wishes shmuel. Did the doc say why only 50% chance the surgery might work? Having the ng tube put in is the uncomfortable part. If they put yours in while you're asleep, when you awake you shouldn't be too bothered by it. Remember to breathe deeply and not hold your breath. You do get used to it and after your bowel wakes up they will likely let you have a lozenge. It does make your throat a bit sore, but it can be tolerated. It's better to have it put in when asleep than to need it and have it put in while you're awake. (Though I've done it 4 times and it actually isn't that bad they just have you swallow some water as they put the tube in and it's not all that bad.) Having it taken out is a piece of cake. As I remember it, they just have you put your chin down toward your chest, breathe in and they take it out so fast you feel nothing. It's amazing. It's been awhile, so thankfully I forget all the details, but it was actually OK for what it is. I wish you all the best. Sincerely, Rosemary
Posted 10/7/2009 4:15 AM (GMT 0)
Hi Rosemary- My doctor will have the NG tube put in after I am asleep, it will be there when I wake up. He said he leaves it in place for 1 day. about the 50% part- he said that this is the percent of people who get constipation after the colon is removed, then there is 50% who are no longer constipated- I hope to be part of that group. Honestly, I can live with constipation, it is the bloating and nausea after eating that is really hard on me. It started in Nov. 2007 -2.5 months after I had my Indiana pouch made - right intestine and ileocecal valve used to make a new urinary bladder. My small group at church is fasting and praying that this surgery works to remove all the gi symptoms, you don't know how bad I want to feel good again,soooo bad. Thanks for supporting me, Shmuel

Posted 10/7/2009 9:04 AM (GMT 0)
Shmuel,

Best of luck. In my own way, I know how much you want to feel better, like you would give everything you own to feel good. I'll pray for you too. There's a saying that all that matters in life is love, work, and health. All are crucial but I think health is the topper. Rosemary
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