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Total Colectomy Part 4

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Posted 8/10/2005 3:17 PM (GMT 0)
Ooops I messed up.  I posted a new topic instead of a reply.  Please see my message "Subtotal Colectomy - June 27".

Thanks,

Kelly

Posted 8/10/2005 4:26 PM (GMT 0)

Kelly - good you found the topic!  I posted a reply to the old one as well!

Hugs,

Emma

Posted 8/10/2005 5:19 PM (GMT 0)
Hi everyone, I am a newby to this, or any other chat room for that matter. I am a33 yr. old woman who has been suffering from chronic constipation for a little over three years now. After going to every GI specialist in the Philadelphia area, and going through every test under the sun, I flew out to the Mayo Clinic in Rochester, MN, where they diagnosed me with colonic inertia. I don't have to tell you all how horrible this disease is, and how it massively affects your way of life. I quit my job about six months ago, and moved in with my sister and her family and have been trying to figure this thing out. Now that i have been diagnosed, I am considering having the subtotal colectomy.

But, I was hoping to talk to other women who have had this surgery for colonic inertia to see what they thought, and to ask some quesitons. If anyone is willing to speak with me about it, please let me know either how I can contact you, or how i can give you my info. so that you can contact me (i've never done these chat rooms before,so i don't know how it works).

Also, I was looking for any recommendations on surgeons in the Philadelphia area to perform the subtotal colectomy. Any help with REALLY be appreciated. It's so nice to see you all chat about this, it helps to make me feel less alone in all this.
Posted 8/10/2005 5:21 PM (GMT 0)

Here I am !!

Avery,  I had mine done laproscopicly.  2 small incisions on my left, 1 on the right, 1 in the navel and about a 1 1/2 vertical right at my public line.  Of course, my stomach is still somewhat bloated. 

I am from Omaha originally, but live 70 miles south of Iowa City.  For some unknown I have stayed here. sad    I had gone to the Univeristy for all my tests and what not,  but I don't think they every listened to me.  I was told by a surgeon there tat the "quality of my life would not improve".  Well, IT HAS !!! already, even with the bumps in the road.   I still owe them tons of money for funky tests that my insurance would not cover.  Plus, I was no better off that last day I was there versus the first day I was there.  But, I may have to bite my lip, because I might have to go back to see about getting bio feedback for my tight rectum.   

I will explain (if interested) about that later, right now I have to get ready for work.

Again, thanks to you all !!!!!

Kelly

ps I discovered a 75 yr old women in England who had this done.  I have been corresponding with her husband.  I will invite them to the site. 

Posted 8/10/2005 5:46 PM (GMT 0)
Welcome Ivy and Kelly! 

Glad you found this site.  There are soo many great people here to chat with and a wealth of knowledge also. 

If you have read previous posts/threads, everyone's recovery has been different.  Everyone had different complications, different diets.. etc.  I am almost 6 months out from my surgery in February.  And like you said Kelly, my quality of life has honestly never been better.  I can only wish that someone would have listened to me 10 years ago and recommended this surgery to me. 

Sorry you are having those pains Kelly, I can totally relate though to the bumps in the road.  Man, those can bring tears! 

I really hope everything works out for you Ivy, I live in North Carolina so I can't really recommend anyone for you, but I can tell you to make sure you are REALLY REALLY comfortable with your surgeon.  I saw a surgeon before the one that did my surgery and was VERY VERY unhappy and was almost talked out of having the surgery b/c she didn't feel being constipated was a reason to have a major abdominal surgery.  So please be sure you ask lots and lots of questions.  There is no stupid question, trust me.  I am a nurse, but I still asked questions that I already knew the answer to b/c I wanted to hear it.  tongue

Posted 8/10/2005 7:11 PM (GMT 0)
I can not completly tell if I am comfortable with my surgeon (Dr. K).  I thought I was at first because he said an older surgeon (Dr. O) would actually be doing the surgery and he would be assisting.  Then I went to Pittsburgh and the doc there told me that Dr. O was a great surgeon and Dr. K was a little his junior.  Then I went back to Dr. K for my final consultation and he said that he would be doing the surgery and Dr. O would only be helping him with the rectocele repair (sp?) and did not mention him doing the colectomy.  So I am not sure what is going on. 
Posted 8/10/2005 10:40 PM (GMT 0)

Cheryl - If Dr K has been trained by Dr. O, I am sure things will be fine.  I always believe in that feeling you get when you first meet a doctor.  Did you feel comfortable talking to him, did you think he listened, does he seem reassuring... yes that doesnt speak to his surgical ability, but generally they are all about the same and this surgery is NOT complex.  Just my thoughts!

Ivy - Welcome to the group!  I am 25 years old and I just had the surgery done on July 20th.  I have had some minor complications and setbacks in the road, but let me tell you... I would do it again because I feel great!  I am still working on the diet, but the bloating is gone... some ab pain but that is related to the surgery (mine was converted to an open after some problems)... so far so good!  I even have felt well enough to do some minor errands (although I do get tired).  I hope I will continue to feel better! :)

Hugs,

Emma

Posted 8/11/2005 12:38 PM (GMT 0)
Emma,

Thank you for your input. I did feel comfortable talking to him and yes he does listen. He seems confident that everything is going to be fine so I guess I will have to do the same.
Posted 8/11/2005 2:44 PM (GMT 0)

No problem Cheryl!

Where is Amira?  I hope she is doing okay!

I was a little backed up yesterday, stomach distended and felt very full.  Hadnt went in about 38 hours or so... drank 1 glass Sunny D... hehe things much better now! :)  I am telling you... that is the miracle drink!

Hugs,

Emma

Posted 8/11/2005 3:28 PM (GMT 0)

Hello ladies,

Amira is home and doing well.  She came home yesterday.  She is pooping and controlling the pain with vicadin, valium and motrin.  The surgery seems to be a great success.  The hospital stay was a nightmare but she will fill you in as soon as she feels strong enough to get on line.

She asked me to say to you all (and these are her words) "you are all full of s**t."  She put on 8 pounds in the hospital.

If you care to send a message to Amira i'll print it out and give it to her.

Best to you all.

Milt

Posted 8/11/2005 3:52 PM (GMT 0)

If Amira gained 8 pounds in the hospital then the food must be incredible.  Seriously, loosing the weight like I did was not fun, so I think she is better off. 

Thanks for the hint about Sunny D.  I will remember that one.  Also, Welch's grape juice seemed to help me as well.  Another thing helping me is an apple and eating lots of tomatos.  Makes for an interesting first morning emptying.  I had so much gas yesterday I thought my insides were coming out as well.  It hurt alllll the way up.

Has anyone had problems with acid, milk (lactose) or salads.  I would really love to eat a salad again, but haven't because I am afraid of the possiblity of gas.  It is soooooo painful when it won't move thru. mad

Kelly

Posted 8/11/2005 3:56 PM (GMT 0)
Thanks, Avery, for telling me to go to this forum. I found that
you guys experienced the same things that I went through and
still going thru. I had my surgery May 27, was in hospital for 8 days and had to return to emergency because of severe dehydration and potassium loss. I had weighed 125 (I'm 5'6) at surgery time, was down to 100 lbs 2 weeks later, have gained
14 back so I still have a little weight to gain back. My main problem is extreme tiredness and I didn't see anyone else mentioning this. I go back to work next week and I'm apprehensive about that. I haven't experienced spasms which I'm glad of. I had a total colectomy and I also had a rectocele so they had to flip me over during surgery to repair that. I still have a cystocle (which they were going to repair during surgery also but decided it would be too much for me) so I have to have surgery for that yet, but believe me, it's going to be a longggg time before I have that done. The worst part for me in the hospital was having the NG tube for 4 days. Nurse had trouble putting it in and finally after my telling her she tried a smaller tube and that worked. But it was miserable having it in. Otherwise the hospital stay wasn't too bad except they wouldn't let me take a shower the whole time so when I got home that was the first thing I did!
I'm glad I got to read these posts. It helped knowing that other people shared the same problems. I go about 8-10 times a day,
very watery but better than before surgery! For the past 3 years the only thing that worked for me was doing enemas and couple times a week and that gets pretty old.
Thanks, guys!
AnnieC
Posted 8/11/2005 4:02 PM (GMT 0)
Amira,  could be from the IV fluids and maybe some swelling that has caused you to gain the weight.  I think you are better off gaining than loosing also.  I have lost 10 lbs all together, but it was just within the first month, now I am back to my normal weight. eyes

Welcome Annie, I'm glad that you are feeling better, just like the rest of us.  Love to hear success stories!

Kelly, I have just recently started to have trouble with gas and gas pains.  I don't eat salad normally, so I can't really give you any advice about that.  I haven't really found anything that helps me move things along yet, so if anyone knows of any tricks, please fill me in!  :-)

Posted 8/11/2005 5:25 PM (GMT 0)
Amira - DONT WORRY about THE WEIGHT... grr you are like obsessed with it.  You dont wanna be me and lose 20 some pounds and be so weak that you can hardly stand up.  I agree with Somer that it could just be IV fluids and stuff.... just give it time.

Kelly - I dont have any problems with milk foods, they seems to be fine.  Anything tomatoey comes right through in solid form it seems.  I have not tried a salad (still on soft foods for another week) but I would say to try ONE bite and drink some water... see what happens... if it works... try another one!

Annie - Welcome to the group!  WOW 8-10 times a day, you best make sure that you are drinking all of your water!  Good to hear another success story.  about your question... its funny... when I went to the mall on Monday I was SOOOO exhausted just from a little walking... I have been running for most of this week.  Its kinda like I think sometimes the more you do, the better you feel.  I am sure if I just sat around all day and did nothing, I would feel weaker.  But even as early as 4 days post op... I was forcing myself to get up out of the chair and do small things!

Somer - seriously... try sunny delight! :)

Hugs,

Emma

Posted 8/11/2005 5:52 PM (GMT 0)

I was up walking the very next day after surgery, they made me do it.  The surgical floor is laid out so that every pass around is a 1/4 mile.  The second day I went a mile, but not at once.  Before surgery, I walked on my treadmill, 2 miles at 4 mph every day.  When I got home, I started back slooooow.  1/4 mile at 1.8 mph and that wore me out.  I am back to a mile, but not as fast.  I remember getting soo exhausted at the store.  I would have to lean on the cart to stand up.  But, now that I am back to work.  I am ready for bed when I get home.  Work is where you really know if you have the stamina.

I have another helpful hint - Since we are all going so much, is your rear end getting sore?  When I was in the hospital I had my husband get me some A&D ointment and Cottonelle wet wipes.  I was getting burnt up from the toilet paper.  The wet ones work great !!!!!!

Emma - thanks for the hint on salad, I will try when I get the nerve.

I will check in later - it's off to work.

Kelly

Posted 8/11/2005 6:07 PM (GMT 0)
I will give Sunny D a try.  I called my surgeons office and spoke to his nurse about these gas pains, and she said to try Citrucel.  Gosh, I thought I was finished with fiber supplements!  Not really sure if I want to try this though.  What if the fiber sends me into a "poop fiasco" and I have to live in the bathroom?!  Man, that would be awful!  I'm going 2-4 times per day now and that is just fine with me.  Emma, maybe the Sunny D is the secret!  I'll try it and let you know, thanks for the tip!

Posted 8/12/2005 12:33 AM (GMT 0)
After reading the posts I am more confused than ever. Everyone seems to say that it is the best thing that they ever did and then they follow it up with all the complications and the continued pain that they still experience. What makes it the best decision?? Simply that you can take a _hit? Yet you have the same pain and discomfort? Have to watch what you eat and still have to take some kind of supplement or pain reliever. Whats the difference? I really dont get it. How is it worth it to go through surgery to still have abdominal pain after the fact. I just dont get it. Some of the posts in the beginning seemed to make sense (somer, saramarie,) but it seems like the posts lately sound a little crazy. Emma are you really concerned that you havent had a bm in 36 hours??? Sometimes experiences like these is why people dont take this condition seriously. It isnt just about how often or how much crap we produce is it? Dont we all ultimately want to feel better?????? It is frustrating because I do have the surgery scheduled for September 16 and the more I read the less convinced Iam that it is a good thing. I would rather not have a bm and be in pain and discomfort than be a slave to the toilet and be in pain and discomfort. Does anyone have a good experience?
Posted 8/12/2005 3:02 AM (GMT 0)

Gingy - It is the end of a LONG day, so I probably should wait until the morning to write this, but I am so moved so I must write it tonight.  Since you took it upon yourself to judge me and others on this site, I am going to be judgemental towards you.  You need to do some more research on this surgery before you have it, and if you have doubts then you shouldnt have it.  Perhaps you are trying to get more information by talking with people on this site, but implying that that our posts are "crazy" is probably not the way to do this.

Aside from Somer and Avery, most of the people on this group are not that far out of surgery, and thus are still recovering.  This is not an instantanous cure, but rather something that you work with while you are recovering.  If you read the research 95% of people who have had this surgery when asked ONE YEAR after surgery how they feel about it, they give a positive result and would do it again.  If you think this surgery will be an instant cure, perhaps this is not a good option for you.

Few surgeries occur without some setback or another.  I take offense to you commenting about my 36 hours without a BM.  If you read the literature and discuss with your doctor for the first 3-4 weeks after surgery they do not want you to be constipated.... constipated to them is not having a BM every 24 hours.  In fact, when I spoke to the nurse today about returning to work, I got chastised because 36 hours is TOO LONG to go without a BM and I need to be more aware, so frankly I was NOT being crazy. 

I am exactly 3 weeks out of surgery. I am not taking any pain medicine, but yes I have some pain.  YOU ARE BEING CUT open AND YOUR GUTS RIPPED OUT... you are going to have some pain and discomfort that can last for up to 6 months.  As you introduce new foods into your new digestive track, you can have cramping and gas problems... but hopefully it gets better with time and experience.

I feel that my result was successful.  I go to the bathroom normally and I am not distended or bloated.  Some of the nonspecific abdominal pain has stopped (although sometimes it is replaced by incisional pain) but overall it has improved my quality of life.  I think that most of the people on this list also feel that surgery was successful and dare I say that most feel it was the right choice for them.

If you need any more information, I would happy to provide it to you, open and honestly detailing my experiences as well as discussing the medical standpoint of things if you wish.  It is not fair to judge people here, as we joke and maybe stress about things that are minor at times.  We are here for eachother to support, and I am thankful that this board exists.  When I was in the hospital struggling with the NG tube before surgery, the thing I thought of was how successful everyone else surgeries were and the  success rate of the current research.  When I had a minor setback in the hospital and was scared, I thought about the group and how beneficial surgery had been in their lives... and it helped me get through.

I appologize to the group for the long posting... its just something that I feel strongly about

Hugs,

Emma

Posted 8/12/2005 4:30 AM (GMT 0)
Emma,
You wrote to Gingy exactly what I was feeling too.....and very eloquently :)
Most of us are still recovering in some way or another. You have to remember that this is major major surgery and that your body is used to having a colon. The small intestine which is used to talking to the colon is now having to adapt to do the job that the colon used to do. Please take this surgery seriously. You sound as if you might want an instant cure and that might happen, but more often you have some good days and bad days and eventually your body will calm down and the small intestine will adapt to its new job.
The body's readjustment and healing time and minor complications are differnt in each and every one of us.
I agree with everything Emma said...Please please feel free to ask us questions and maybe your surgeon can talk to you more thoroughly about recovery.

I am glad I had the surgery ----I was disappointed at first that I still had to take Miralax, but the difference now is that the Miralax works! My quality of life has improved dramatically. Even though I am still eating soft foods that doesn't interfere with me going out, excercising, doing whatever I want when i want. That was impossible before surgery b/c I never felt well. I now feel really good most of the time--i still have days with bad gas pains or a few spasms, but as each week passes the gas and the spasms decrease.

If you want no gas and no pain then do not have the surgery b/c you WILL have to go through recovery!

The women on this board have been a tremendous source of support, motivation, insirpation and knowledge please don't demean that fact by calling us "crazy"-- You know your body and the rest of us know our bodies.
sara
Posted 8/12/2005 11:09 AM (GMT 0)
Thank you Emma and Sara, I too feel the same way.  With all the setbacks I have had from this major, major surgery, I would still do it over again.  I go to the bathroom everyday without the use of laxatives and each day I do feel better and better.  I am still taking pain medication because of trigger points caused by the surgery, but this sometimes happens with a surgery of this length and there is a solution (trigger point injections - which I start on Monday).

This forum is not only for information, it is also for venting to people with similar experiences and problems.  It feels wonderful.  Any questions that you may have can be answered by reading the posts in colectomy 1,2,3 and four.  You just have to plod through them.  You will get answers.  And if you feel the surgery is not for you, then that's good too.  We still did our job helping you to make an informed decision.

We are not crazy, we are women that are recovering from a very serious operation in different stages of recovery.  We all have had similar experiences, but each recovery is different.  We help each other and would like to help you too Ginny, if you want it.

Hugs,

Zoe

Posted 8/12/2005 12:10 PM (GMT 0)
First of all, let me say, I think all of you that have had this surgery, and reading all your journeys through the surgery and then the recovery journey once your home, well, I think, no....wait, I believe you are all doing a GREAT job balancing your emotions, your pain, and all the unanswered questions that will obviously plague each and everyone of us that have experienced this or any other type of surgery.  My thoughts about what gingy wrote...very uninformed, definitly looking for a quick fix. My innermost being wants to reach out and hug her only because I too wanted a quick fix to a problem that took years to get me to the place of surgery.  I think everone here will agree that our constipation took time to reach it's full debilitating potential it causes.  So is there a quick fix to a disease that takes years to come full circle, absolutely not.  I have had 10 colon surgeries to date, tha last one leaving me with an ileostomy. If I could go back and pick the time in my life that I felt my best, it would be almost 2 years ago when they removed my colon. Sure there is pain, and yes you will still take some meds, but the ultimate goal is not to wake up from surgery with a brand new body, but that you would wake up to a new way of living. Instead of taking multiple laxatives that probably wont work anyways, or starving yourself so you can actually button your jeans without the bloat, or always knowing where the bathroom is because if you do go out to eat you might puke afterwards due to how "full" you are.  Instead, for about the first year we are aware of the bathroom because we will probably need it sometime during or after our meal...totally NORMAL!!!!! It would seem to me that I would much rather put my butt on a toilet seat I have'nt cleaned then my head inside one.  Another possibility gingy, perhaps your problem hasn't dictated your life for as long as it did ours. I will tell you this, you will know when it is time, and so will your body.  Unfortunately, I protested for a long time before I gave in, and when you do this, the chances of your colon reacting in a very negative way grow with each and every passing day that you continue to abuse it with the help of laxatives.  My colon was dead.  By the time they went in to remove it, there was nothing left to it. As they took it out of me, it actually fell apart. My small intestines had adapted to acting as my colon long before we took the colon out, which even though that sounds good, it was not. I never had the frequent bowel movements, or the burning butt, I went maybe twice a day and I was O.K. with that.  However, about 3 months post-op, my body had enough! I obstructed back to back to back to back. End result...temp ileostomy. The reason for this... while I thought I was super woman, and lived a very uninformed life about "life AFTER a total colectomy", my colon was causing havoc in me. This and all the surgeries I opted for before giving into the colectomy caused many many adhesions thus resulting in all my obstructions.  Since that time, I have had 2 more major colon surgeries, and calmy await another. My advice to you gingy...quit playing on the computer, and go and get informed.  It may be the difference between healthy living, and watching from the sidelines. To the rest of you...it's been a pleasure to rejoice in your triumphs, cry with you all during your set-backs, and laugh at all the silly things. Your all gonna make it, and when you do, there will be many of us sitting back and watching and waiting to hear about your successful journies!     Sincerely, Tammy 

Posted 8/12/2005 2:16 PM (GMT 0)

Gingy,

We are by NO means a "slave to a toilet".  We are just very in tune with our bodies, before and after surgery.

 I went into this with great optimism.  I was not too worried, even though I had the opinion of only one other and information from the internet. I was in the pre-op room still asking questions to my surgeon who wanted to cancel the surgery.  But, after a few moments of the same questions and rethinking what I had been living with, I went ahead and did it.  I knew I would be in that same situation some time in the future.  Easier to recover when your 40 than 45 or 50.  Of course after you doubt everything you had just done, because you don't have a road map to go by.  Every one has a different experience, yours maybe totally with out complication. I believe it was the best thing for me, I am going to the bathroom. That is what I needed to do.  All the other bad stuff after the surgery is in a way the bad stuff before the surgery.  Either or you still think about going.  For me I will always have the thought of how many times I have gone a day in my mind.  It is a part of me, just like it was when I had to recall how many days it had been since I went or how many senna tabs did I take last night? Tammy points out below that her colon was dead.  Mine had signs showing several laxative abuse.  I could have probably went a few more years, but why.  I can relate to all these women here.  This is a good forum for us to vent, share hints and ideas and friendship.  All of us can truly understand what the other is feeling or saying.

I don't know where you live, but I would try to seek out others in your area who have this surgery and see if they will speak with you.  If you want, you can e-mail me and I will give you my number and we can talk person to person.  I live in Iowa.

Kelly 

Posted 8/12/2005 2:44 PM (GMT 0)
Tammy - your conviction and words brought tears to my eyes.  What a special person you must be!

I am so glad that other people had strong opinions regarding the post, as I was afraid that I would be seen as being rude.  I have a dual role, one the one hand I am a patient who has a problem, and on the other hand I have the knowledge of a nurse.  I know for a FACT that attitude has alot to do with how you recover.  If you are not sure of the surgery, you will second guess every bump in the road even if those bumps are normal.

Here is what my surgeon always says "Get the brown out, any way you can... and when you cant that is when you have surgery"  He clearly told me that the ONLY thing the surgery is guaranteed to produce is a BM 1-3 times a day.  He said there was NO guarantee that the bloating, distention, pain, or any other symptom would go away because your body is used to functioning a certain way.  I was lucky because too this point, I have not experienced it.  I theorized that because those symptoms in me were caused from laxative use (I actually felt ok when constipated, it was just when starting the laxatives when it had been more than 7-10 days that I felt sick).

Now onto my CRAZY thing... I am kinda worried about the BMs guys.  I dont know what I am doing wrong... but again today it has been 30 hours since the last one.  I dont feel bloated... I did have a very small BM during the night.  Do you think it counts ANY BM, or just sizeable ones.  Grrrr I dont wanna call the nurse back again... :(

On another note, college starts in a few weeks and I am soo excited.  I am teaching 3 classes, and taking 3 classes... so I will be busy... but I will keep up the fluids... I will have to.

Does anyone else notice if they dont have enouh fluids they get more constipated... I am wondering if I am still paying for Tues and Wed where I probably didnt get quite enough ... or not as much as I normally get because of running errands.

Amira - your in my prayers, get better soon because I miss not getting your emails!

Hugs,

Emma

 

Posted 8/12/2005 3:16 PM (GMT 0)
Tammy and Kelly--your posts were Very insightful--I got chills and Emma got tears. This is such a great place to visit and chat!

So Emma--I totally get constipated when I don't drink enough fluids--i don't know how much I am drinking exactly, but i would say somewhere around 140-150 ounces--If i go out for the afternoon or evening and don't drink water i won't go to the bathroom. Do you feel constipated after 30 hours? Are you bloated?
Could your small instestine be protesting just a little bit? Mine definitely protested for a while and still does every now and then when I go off the soft diet. I talked to my doc's nurse on the phone yesterday and at the beginning of Sept. I will have a CT scan to see if there might be scar tissue at one of in incision sites that is pressing on small intestine. Could you possibly have scar tissue?
When I didn't have a BM for a few days the surgeon put me on Miralax--for some reason Miralax doesn't usually make me bloat and it seems very mild so I don't mind taking it. Maybe you should call--like you said earlier--the docs and nurses don't want you to be constipted while your body is still healing from the incisions and anastomois.
Let us know if you talk to the nurse--Miralax isn't that bad.......I started taking it only a week after i was released from the hospital.
Sommer--I don't know if I ever answered you about taking Librax--I only take it when I need it-which is about 1-2 times a week.

Amira--Can't wait to hear from you.....We're all thinking about you!
Sara
Posted 8/12/2005 6:55 PM (GMT 0)

Gosh, I haven't been reading in a day or two and man have I really missed alot!!  CRAZY!  I was sooooooooooo very offended when I read that.  This by far has been the BEST decision I have ever made for myself, and if all I have to put up with is some minor gas pains for the rest of my life, then so be it.  I am certainly not a slave to the toilet.  It depends on what I eat and how much I eat.  Obviously, gingy, you have no clue about this surgery or anything that goes along with it.  nono I would not recommend you have it, after all, you wouldn't want others to think you have joined the "CRAZY BANDWAGON" would you!

Emma, I have noticed also that if I don't drink much during the day, I definately have less BM's.  So DRINK DRINK DRINK!

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