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Total Colectomy... Part 12

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Posted 1/6/2007 4:19 PM (GMT 0)
Gogently – they did the Heart Profusion test on me because I get these terrible intermittent chest pains. The pain starts at the duodenum up through the esophagus across the chest into the back and shoulders. The GI doctor and the two surgeons think it is just pressure but the one surgeon wanted to be on the cautious side so he did the test. Basically, they give you an IV with radioactive dye and do X-rays to see if everything is open and how your heart pumps.

This surgery scares me also but I cannot go on like this. I am looking forward to going to the BR and not have to take something to make me go. The only thing that works still somewhat is the good old Water Enema with Black Walnut Extract. I cannot imagine myself sticking my butt in the air and placing a tube up to have a BM when I am 65, 70, etc., years old. I need some quality put back into my life. This dysfunction might not be life threatening, but it is life debilitating. All I want to do is have a BM. If this surgery is the only help there is then this is what I will do. I have tried every OTC remedy there is I think. I have even tried Colonics, Chiropractic Care, head massage therapy, TENS electrodes, and the list goes on and on and on.

My surgeon is doing it laparscopically. He said hospital stay could be as little as two days. If for some reason he must cut me then my stay might be as long as 10 days. He said if he needs to cut the scar would be from about 2 inches above the belly button down to the pubic area. While he is in there I am going to ask him to look and see if everything else is okay. Plus I am not leaving the hospital until I have a poop.

My one GI doctor said getting the upper GI emptying study is a good idea to do. Also the manometry.
Posted 1/6/2007 4:38 PM (GMT 0)
Phyllis thank you so much for your help! Do you know where I can buy calmaseptine? Have you ever heard of Tucks for toilet paper? I am going to have diarrhea forever or will that subside with time! I also have a rectal prolapse and he is supposed to lift that also! Not sure how that will effect things! Will I ever get to eat my fav. Mexican food again? You are a reat support!! lam
Posted 1/6/2007 4:57 PM (GMT 0)

Hi lam

The calmaseptine is over the counter in pharmacy.  If they don't have, have them order...it's about $8/tube.  Place a bit on toilet paper and the apply.  It has menthol in it so it has a numb like cooling feeling.  Diahrrea will not last forever.  There is bran capsules which will bulk you and also prescription medication such as immodium but in the beginning you will go more often...Be patient and enjoy the fact that you will be going without taking the awful meds and cramps and pain and nausea.  You will just go....

As far as food, you probably will be able to eat mexican food down the road..just give yourself some healing time first.  It will be okay..you'll see.

Posted 1/6/2007 5:12 PM (GMT 0)
Gogently my pre-op ws last week! I a going out of town to have this surgery where my parents live and will be there afterwards! I am going to bring my lap top and when I feel like I can I will be in touch! My dr. said he was only cutting my stomach from the pubic bone to belly button! Do you think my constipation and taking laxatives daily has caused me to be so tired also? I want to feel normal again! I could put this off if I wanted and continue on but do you think I would get worse and worse and have more problems in the future! My reason for now is because of my rectal prolapse~I could eventually destroy the rectum to where things could be alot worse! What do you think! Is there anyone out there that has had the same problem? Tracy I will keep in touch with you~Could you describe how you got this point also? I cannot afford to lose weight or gain weight! Alittle concerned about that issue too!!! Hope everyone is having a good day!! lam
Posted 1/6/2007 11:09 PM (GMT 0)
Phyllis, Thanks about the info on the calmaseptine. I will have to check Wal-Mart by me to see if they carry it. Also for the idea to get pre stocked with foods that I can eat at home. Right now I don't have much of an appetite and when I do eat, I don't really enjoy it. It's like my tastebuds are off. Did you have that too? Are you eating 3 meals a day right now or several small ones?

Resa, Yep I did the same...got so tired of the allopathic doctors that I jumped over into the alternative arena for a while...did all the stuff you did...even the cranial sacral therapy (head massage therapy). It was my naturopath that encouraged me to go back because she said this is mechanical and not something that we can fix with natural or RX meds. I also get frustrated because I can feel the pressure but never get the 'urge'. Right now I'm taking alot of Dulcolax every other day and praying that I don't shut down. Even with the laxatives I don't feel empty and I just pass dirty water but it is enough to let the gas through which helps with the bloating. I have my days where I think 'what am I doing?' then my moments where I'm in such pain that I think I should of had the surgery done yesterday.

lam, the constipation will make you extremely tired because your body needs to get rid of the excess material and toxins. I wouldn't worry about the weight issue. I know some have loss and some have not...so it sounds like your body will do whatever it has to to adjust to the surgery.

Hope that everyone is having a comfortable day

gogently

Posted 1/7/2007 2:00 AM (GMT 0)
Gogently, My surgery has been schedule for Jan. 17. My surgeon will be performing an abdominal incision, so I will be in the hospital at least 10 days. I will keep in touch as much as possible and looking forward to sharing this experience.

Iam, My difficulty began a little over eight years ago when I had to have a radical histerectomy and 6 inches of my colon removed due to endometriosis. Since that time constipation has been an ongoing struggle ( physicians feel they damaged some nerves during the procedure). It began to cause problems with my kidneys and I began to have recurrent uti's that were making me even more ill than the constipation. I suffered all the symptoms of constipation, including terrible edema. After many physicians over the years, they finally said there is nothing left but surgery. I would have to say the most interesting medication they put me on was xenical 3 times a day for 6 months. I didn't lose any weight, but I was able to have a BM for a while and then my colon adapted...so here I am having surgery on Jan. 17, knowing that I will get to go the BR like a normal person again. I am looking forward to that.

Tracy
Posted 1/7/2007 3:05 AM (GMT 0)

Hi everyone

about getting stocked with food for when you come home for surgery...don't forget to get lots of toilet paper

Posted 1/7/2007 5:00 PM (GMT 0)
Tracy I had a hysterectomy last year with major endom. nd a liver tumor they found that was benign! They ended taking part of the liver! I hope that was the last suprise in surgery! That recovery was hard and my Dr. said that this is alot longer! My constipation started in High School! To go to the br I took natural remedies from the health food store for years and just inthe last 6 years I had to start taking more laxatives! They still work but sometimes not and I know it wil only make things worse! Does anyone know if the cramping you get after surgery is the same as taking laxatives! I hate that feeling! Does the chronic use of laxatives make me feel so exhausted all the time!! Can we take vitamins after the surgery! Tracy i will be in the hospital when you have your surgery! I will try to contact you from the hospital if these computers work and are wireless!! Take care lam
Posted 1/7/2007 5:46 PM (GMT 0)

Hi

Be careful when taking medicines and vitamins.  Sometimes they can come out whole or hardly dissolved. You may consider taking liquid vitamins.

I get no cramping at all.

Posted 1/7/2007 6:38 PM (GMT 0)
Ok thank you! what about the medicine that I am regularly taking? Can you tell I am scared because it is so close! They are 1) Billy 2)Rectal anastomosis 3) Ileoanal Anas 4) total left colectomy! Can someone explain each of these terms? I so appreciate your help!! lam
Posted 1/7/2007 7:19 PM (GMT 0)
Those will probably be okay but you should put that on the list of questions for surgeon. As far as the terminology you listed, again ask your surgeon...many things have big words but are simply explained or may be a different term for the same thing.
Posted 1/9/2007 7:44 AM (GMT 0)
So I know there's like five hundred posts that already says this, but darn, I am so glad I found this site! It's just amazing (and a little sad) to see that there are other people that all they really want in this world is to take a freakin' dump! I mean, where else can I talk about how frustrated I am with my sore butt from doing enemas? I think especially due to my age (22) I have very limited people to talk to. I mean, my friends are out living their lives and having fun and i'm in the ER because I have no potassium because I took too much laxative with nurses asking me if I'm anorexic because a 22 year old couldn't possibly have anything actually wrong with her. (Thank the lord I have a PPO and I found a motiliy specialist only 2 hours away in San Fran!) I think of how frustrating it is that something that can't kill you can completely ruin your life and make you wish you were dead because you aren't really living anyway? Anyways, enough rambling. It's just really nice to "be around" people who understand. You all are a very BIG help!

P.S. Balneol, very refreshing soothing bootybunnyhole lotion and cleanser available over the counter. tongue
Posted 1/10/2007 12:55 AM (GMT 0)

 Hi everyone my name is Jenn,

I'm new to the group but have been continuously reading these posts for the last 10 months, and it was these posts that kept me calm and knowledgable up to my surgery date. This past April i had a total abdominal colectomy and illorectal astomosis and spent 12 days in the hospital on ivs, but i'm telling you it was all worth it, even with finishing my senior year of high school on hospital homebound care. My whole life i have delt with constipation and for these last four years all i did was go to doctor after doctor, specialist after specialist only to deal with test after test and take drug after drug. I was catually out of school more than i was in school. Finally last March, i found the best colon rectal specialist in the southeast and he diagonised me with a severe case of colonic inertia, one of the worst he had seen. My Sitz marker test bascially said it all, in 10 days the markers had not moved an inch from their starting point in the colon.

Well anyways, bascially i have decided to finally join as i feel i may be of some help, in at least i can offer you suggestions from my personal experience.

However to the veteran members i do have a question or two:

1. Has anyone noticed any changes when you eat anything with corn syrup or cornstarch  bescause it effects me greatly.

2. Also, why is it that you can eat pears but no other fruit: just curious?

Jenn  (still not perfect, but getting there... now my small is acting up so here come the tests again)

Post Edited (beentheredonethat) : 1/9/2007 6:04:36 PM (GMT-7)

Posted 1/10/2007 5:45 AM (GMT 0)

Hi Jenn and Booty and all,

Welcome to this side of the ostomies board! As you can tell we almost need our own section as we're on part 12. Jenn, I'm glad to hear that you are really pleased with your recovery. That is reassuring for me. Almost everyone on this site has been pleased with their surgeries and would do it again. My TC surgery is scheduled for the 22nd.

Booty, have you started any of the testing yet? Have they done the sitz marker test? A colonoscopy?

Lam, you're in my prayers for a perfect surgery on Thursday and a speedy recovery. Take good care of yourself and when you're good and ready let us know how you're doing, okay?

Tracy, is your pre-op tomorrow the 10th? Let me know how you're doing, okay? Remember I'm in this with you and Lam! This is our month! I'm praying for calmness and assurance of a better life for all of us. It is wonderful having a support group that understands. It is very hard to try to explain this to others who are 'normal'. They have no concept of what we have got to go through just to make our bodies function.

gogently

Posted 1/10/2007 7:15 PM (GMT 0)
Thank you for your suggestions and help!! I have surgery tom. and will check in asap! Thank you for your support! I will be in Dallas at Baylor hospital! I live in Austin !! Lam
Posted 1/11/2007 1:10 AM (GMT 0)
Iam, my prayers are with you and I wish you a speedy recovery.

Gogently, my sugery is next wednesday, but they have yet to schedule the pre-op, is that normal? I called today and they said they would be in touch. Thanks for all your support.

Tracy
Posted 1/11/2007 4:07 AM (GMT 0)
Welcome to all the new people.

My prayers are with those who are about to have this surgery.

I bought a new herbal laxative called Colon Clenz by Body Gold. I took a total of 10 capsules and my whole abdomen/stomach area developed a red rash. It burns and itches. That's all it did. Didn't make me go. I took an enema so I could remove as much stool as possible to get this herbal stuff out of my system. I don't know if that will help but I thought I would give it a try. Has any one else used this particular herbal laxative and did it have the same effect on you?
Posted 1/11/2007 11:39 PM (GMT 0)
Hi My name is Krissie and I am new to this forum.  I had a colectomy just a few weeks ago, so I am still getting used to the bag and all the emotions that go with it.  I was sick for over 10 years and had many surgeries.  I had some "leakage" that was tolerable and easy to deal with up until this past spring.  Then I was as incontinant as a 2 yr old.  My life stopped.  I hardly left my home.  Canceled plans with my girls all of the time.  I lost two husbands due to the fact that they thought I was disgusting.  I should have never married again, but he seemed different and that he understood.  As soon as it all got worse and I got sicker......he left. 

 

I keep wondering now how if I cannot stand the way I look, how am I ever going to have another relationship?  I hate to be alone, but I don't want to trade it for someone who is sickened by me.  How do I start to date again...after my recovery?  How do you tell someone about this?  Do I bring it up when horrible noises come out of myy body that I cannot control?  I need help guys, anyones input would be appreciated.

 

Krissie

Posted 1/12/2007 5:22 AM (GMT 0)
Gogently,
I have done what seems like a million tests! I have had two colonoscopies, sitz marker, endoscopy, antroduodenal motility, colonic motility, anal rectal manometry, breath hydrogen, and I feel like I'm leaving some out! Today I met with my doctor who said my tests on the small intestine all came back normal and we scheduled my appointment for the surgeon next week. The surgeons office said it will only take them a few weeks to get me in for my surgery after my appointment next week, the ball will be rolling fast now. My file is labeled STAT. I will be having a total colectomy laproscopically. No bag. That is the plan at least. I feel much relief after today. I was worried there would be more tests or more medicine or more biofeedback, or something to hold me back even more, but I am on my way! yeah
Posted 1/12/2007 8:59 AM (GMT 0)

enpointe, how are you doing? I keep thinking about you because of our fibro issues. I had my MRI done and I don't have MS, just lesions from previous migraines. So we're back to the fibro and the colon issues. I'm sort of relieved but I've still got some wacko things going on and hopefully these issues will disappear after my surgery. I don't think that God intended for us to be holding tanks and according to my naturopath, recirculating all that garbage in my system can only cause a multitude of problems. I'm hoping in time that you'll see your fibro symptoms subside and disappear...I'm hoping this for myself...especially the lack of sleep and the migraines and the brain fog! Just out of curiosity...what do your fingernail beds look like? Since my pain issues have increased the last couple months, four of my moons have turned red. I told you wacko symptoms!

booty, I'm glad to hear you've got the worse behind you...the tests seem like they take forever. Are they going to do any type of pelvic floor reconstruction for you also?

Tracy, they usually do the pre-op a week before but your surgeon may have a different protocol where you're at. Usually you go to the surgeon for last minute instructions about the procedure (if you have any questions this is the time to ask!) and they'll go over the prep you'll need to do. Then you head over to the hospital to do blood work and possibly a chest x-ray.

Resa, yes I've used Colon Clenz and it is the senna and cascara sagrada that made you have a reaction. Please be careful...you could do some damage to other organs that are along side your colon in that large of a dose. Our kidneys and liver are doing over time right now to compensate for our colons not doing their job. Have you tried the duclolax and the ducolax suppositories at all? Find something that works to keep you somewhat open until your surgery...even if you're only passing gas to keep the bloating down. Be sure to drink half your weight in ounces of water every day as our kidneys are doing all the flushing right now. I weight 180 and drink 5 bottles of Wal-Mart water a day (they are 20 oz a piece). I stack them on the counter so at the end of the day I know I drank my quota. Have you tried any of the sorbitol products? They are usually found in diabetic foods. It is a sugar substitute and will give you the runs if you get enough of it. Be patient, okay? Please take care of yourself,

gogently

Posted 1/12/2007 2:05 PM (GMT 0)
Hi gogently, I was so happy to hear from you again and I was thinking of you also and am so excited to hear that you do not have MS, what a relief. No, I do not think God wants us to live like we have lived and I have noticed several things that have changed immensely in me since the surgery: my skin is perfectly clear all over my body and my hair is even better and doesn't even require conditioner if I don't want to use it. My nails used to be red alot and I never even thought it could be due to this stuff and now I noticed myself that they are totally normal. My chest area is very clear of all the color discolorations pink, ect. from all the years of sun and it is pure white. I am very fair and this is nice. I have rosacea and this has improved also and have not even needed my meds for my face hardly at all. All of my body skin issues of little pink bumps and stuff is all gone. My surgeon gave me 5 days of diflucan since I had a yeast infection and I think this and all of the unhealthy waste has caused this all to happen. I am so glad for this. I hope that all of these weird symptoms will go away for you also. I used to have really greasy skin and hair and it seems that it has definitely changed for the better and wonder if being cleansed internally has helped this also. I hope your fibro is a bit better. I will tell you the meds I am on, I take trazadone to help me sleep better ( I also have restless leg syndrome which does not get you into the deep rem sleep) , I take zanaflex 8 mg per day for the muscle aches actual inability to function. If I do not take it for 3 days, I am bedbound and in so much pain it is unreal. Maybe this might give you some info. I am just go glad that you do not have MS. Please take care, I need to drink much more water and will try your idea. Will talk again, enpointe
Posted 1/12/2007 6:12 PM (GMT 0)

KLH said...
Hi everyone,

My colectomy was on the 14th and I'm already home!! The surgery went so smooth, I couldn't believe it. The only complication I had was my potassium level was very low going in to the surgery and could not be brought up while I was in the hospital. They gave me 12 bags of potassium, the strange thing was it kept dropping and I wasn't losing any. I haven't had hardly any BMs and no vomitting at all since the surgery where was it going??? I started at 2.8 and at one point it was 2.4 and even after 12 bags it was only 3.0 when I left the hospital. Anyway.... I have retained all of the fluid in my tummy and thighs, I literally have doubled in size there..and that's causing more discomfort than my actual incision. Anyone have any thoughts??? I'm trying to be optimistic, but in all the experiences that have been shared in the forum I haven't heard anyone say they came home NOT having BMs. I'm a little concerned that the 6" he left might be causing problems in there already.
HI, AM NEW TO THIS SITE. MAY NEED MY COLON REMOVED DUE TO SUSPECTED SLOW TRANSIT. BUT I ALSO HAVE OUTLET OBSTRUCTION.THIS IS AFTER PELVIC FLOOR RESTORATION SURGERY THAT FAILED. DEVELOPED STRICTURE THAT SURGEON IGNORED. HAD TO GET STRICTURE STRETCHED BY ANOTHER DR. STRICTUE STAYED open BUT COLON SORT OF QUIT??? WITHOUT LAX'S THAT IS. EVEN WITH ALL THIS I GO WELL ON 12 PHILLIPS TABLETS OR A GLASS OF MIRALAX. WHAT WERE YOUR PRE-OP SYMPTOMS.? I'M SORRY I CAN"T ADDRESS YOUR QUESTIONS. JUST JUMPED AT THE CHANCE TO DO MY FIRST REPLY ASI JUST REGISTERED. BEST WISHES ON YOUR RECOVERY. I COULD BE IN YOUR SHOES SOON. SINCERELY, esoR
If anyone has any thoughts I would love to hear them.

Thanks

KLH

.

Posted 1/12/2007 6:24 PM (GMT 0)

KLH,

I am sorry to hear that you are getting discouraged with your sized doubling in your tummy area.  You have to remember they gave you a lot of fluid, and it has to come out.   I too had a problem with my potasssium..How could I not with constant diarrhea?  Give it a little time and I know that it may sound silly, but keep drinking...that helps you put out fluid.  Definitely do not stop drinking.  I don't mean alcohol...LOL  

Keep your chin up,

Krissie

 

Posted 1/12/2007 8:16 PM (GMT 0)
Dear KLH,

I don't know how I did this, but I'm very sorry. I didn't mean to write in your post. Am in lots of trouble and was just anxious to get started using this forum. So here is my post again. Again, so sorry to mess up your post.

HI, AM NEW TO THIS SITE. MAY NEED MY COLON REMOVED DUE TO SUSPECTED SLOW TRANSIT. BUT I ALSO HAVE OUTLET OBSTRUCTION.THIS IS AFTER PELVIC FLOOR RESTORATION SURGERY THAT FAILED. DEVELOPED STRICTURE THAT SURGEON IGNORED. HAD TO GET STRICTURE STRETCHED BY ANOTHER DR. STRICTUE STAYED open BUT COLON SORT OF QUIT??? WITHOUT LAX'S THAT IS. EVEN WITH ALL THIS I GO WELL ON 12 PHILLIPS TABLETS OR A GLASS OF MIRALAX. WHAT WERE YOUR PRE-OP SYMPTOMS.? I'M SORRY I CAN"T ADDRESS YOUR QUESTIONS. JUST JUMPED AT THE CHANCE TO DO MY FIRST REPLY ASI JUST REGISTERED. BEST WISHES ON YOUR RECOVERY. I COULD BE IN YOUR SHOES SOON.

SINCERELY, esoR






quote="esoR"]

KLH said...
Hi everyone,

My colectomy was on the 14th and I'm already home!! The surgery went so smooth, I couldn't believe it. The only complication I had was my potassium level was very low going in to the surgery and could not be brought up while I was in the hospital. They gave me 12 bags of potassium, the strange thing was it kept dropping and I wasn't losing any. I haven't had hardly any BMs and no vomitting at all since the surgery where was it going??? I started at 2.8 and at one point it was 2.4 and even after 12 bags it was only 3.0 when I left the hospital. Anyway.... I have retained all of the fluid in my tummy and thighs, I literally have doubled in size there..and that's causing more discomfort than my actual incision. Anyone have any thoughts??? I'm trying to be optimistic, but in all the experiences that have been shared in the forum I haven't heard anyone say they came home NOT having BMs. I'm a little concerned that the 6" he left might be causing problems in there already.
HI, AM NEW TO THIS SITE. MAY NEED MY COLON REMOVED DUE TO SUSPECTED SLOW TRANSIT. BUT I ALSO HAVE OUTLET OBSTRUCTION.THIS IS AFTER PELVIC FLOOR RESTORATION SURGERY THAT FAILED. DEVELOPED STRICTURE THAT SURGEON IGNORED. HAD TO GET STRICTURE STRETCHED BY ANOTHER DR. STRICTUE STAYED open BUT COLON SORT OF QUIT??? WITHOUT LAX'S THAT IS. EVEN WITH ALL THIS I GO WELL ON 12 PHILLIPS TABLETS OR A GLASS OF MIRALAX. WHAT WERE YOUR PRE-OP SYMPTOMS.? I'M SORRY I CAN"T ADDRESS YOUR QUESTIONS. JUST JUMPED AT THE CHANCE TO DO MY FIRST REPLY ASI JUST REGISTERED. BEST WISHES ON YOUR RECOVERY. I COULD BE IN YOUR SHOES SOON. SINCERELY, esoR
If anyone has any thoughts I would love to hear them.

Thanks

KLH

.

Posted 1/12/2007 9:09 PM (GMT 0)

Hey guys,

I really need help with dealing with my new colostomy.  I have posted before, but no one has responded to me.  I seee this is a busy site, so should I try another?

Krissie

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