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TOTAL COLECTOMY PART 31

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Posted 2/2/2010 4:40 PM (GMT 0)
answers4meTDR, that is fantastic that you may be a candidate for BCIR.  I sent my medical records to St.

Petersburg and am going to call them this afternoon and see if they have received them or not.

 

I am hoping for surgery in June, too!  It would be great if we were there at the same time.  I'm still

very unsure if I'll be able to be a candidate or not, and if my insurance company will consider letting me

go out of network to have surgery with them.

 

My husband is like your mother and does not want me to consider BCIR.  He wants me to get a permanent

ileostomy and be happy with that decision.  I will always wonder "what if" if I don't find out my alternatives.

My appt with Dr. Wexner at Cleveland Clinic is March 8 and he will determine from seeing me and my test

results, if my small intestines have completely healed and if I'll be ready for surgery in June (whichever type of

surgery it may be).

 

I live in Tallahassee.  Where do you live?

 

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attached to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

Posted 2/2/2010 4:54 PM (GMT 0)
answers4meTDR, I am glad that you spoke with the staff at Palms of Pasadena in St. Petersburg. So far, I think that
Susan K is wonderful.

I sent my medical records to them in the mail last week. I just spoke with Susan and she said that they received my
records late last night and would review them. I told her about my "leg bag" situation and she said that she would call me
on Thursday and give me a quick update.

Yes, I really want to have my surgery in June (it will be 1 year since my last surgery), and hopefully my small intestines
will have healed. So far, I have had 3 tests completed out of 4, and they've all turned out well. I see Dr. Wexner on
March 8, and would like to hear his opinion about BCIR, too, vs. Brooke ileostomy surgery.

If I am a candidate for BCIR, and if I can convince my health insurance company to approve me for out of network, I would
love to meet you in June.

I live in Tallahassee. Where do you live?

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attached to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10
Posted 2/2/2010 6:00 PM (GMT 0)
HIYa

Oh my gosh a lot is happening here - Lizzie i do hope this k pouch is working for you - whatever it is -  after the hell you have been through - i read a little of prev notes.

its been a while and i just wanted to drop in to see how you all are.  It doesnt sound good all round from a glance.

Love to all my tc gals xx

Posted 2/3/2010 12:07 AM (GMT 0)
Butterfly, I live in Georgia. I imagine many doctors will be against the internal pouch because like Rosemary said, "they can't see it". But, it seems many people have had it for years and absolutely love it. The lady that I spoke with from Fl about the BCIR said they also work to try and get insurance to approve it. So, if you are a candidate, then they will work with your insurance company.
I think I have come to this decision because my life is spiraling out of control while I sit on the toilet. I need my time back! That would be really cool if we had the surgery at the same time. Then atleast we could support each other. She did say the 1st 3 days would be awful. Shoot, I forgot to ask how big the cut is. Do you know? Remember, I still have my colon and rectum.
Posted 2/3/2010 1:26 AM (GMT 0)

Hi all,

Any word on Lizzie?  We are supposedly going to be out of satellite communication for a few days while we go toward and

into Antarctica.  So will hope she is doing better when I next log on.  Wish me luck, Rosemary

Posted 2/3/2010 12:17 PM (GMT 0)
answers4meTDR, did you speak with Susan K? Thank you so much for telling me that they will work with my insurance company, because that may make a big hurdle smaller..

I can so relate to you about wanting your quality of life back. Just watching the videos on www.bcir.com make me want to be like the hundreds of others that have been lucky enough to have this surgery and are loving life again.

I had a colectomy, so my colon is gone, but I still have my rectum. When my colon was taken out, it could either be open surgery or laproscopic. I had too much previous scar tissue and had to have it done open surgery. I have a cut from my pubic area to a bit above my belly button. I did start a post not long ago asking how it feels to have your rectum taken out and I got a few answers back.

I think that it would be wonderful to be at Palms of Pasadena with you. It's a small world and I hope that we both can have some success stories..

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attached to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10
Posted 2/3/2010 11:13 PM (GMT 0)

Lizzie,

See the thread on diet differences between BCIR and ileostomy.  See the moderator's comments.

BCIR is apparently only done by very few places and trouble with it could only be dealt with by

the place that did it.  Also note the comments that you still have to chew your food to mush or

the waste wont fit through the catheter (much like it would not be able to come through the

ileostomy stoma.)  I know you have thought this decision out well, but no matter what, if one

is dealing with some big gut moderation such as most of us are, the reality is we can't just eat

"any thing we want."  Not trying to sway you one way or the other, just trying to help.  Miss you.

We are still in and out of satellite communication so am still on.  Wondering about Lizzie.  No news

makes me concerned.  Jen too.  Thoughts with all of you too.  Today we pulled up right next to a

huge ice field.  It was amazing!  Have danced a LOT.  Hope I continue to stay well.  Rosemary 

Posted 2/4/2010 1:37 AM (GMT 0)

Hi all,

I have been talking to Lizzie on FB.  As of yesterday she was supposed to go home today but her fever returned so that was on hold.  I missed her on FB today still hope to catch her on tonight.  She seemed really down because her mother was having surgery and her husband's birthday is this weekend.   I am hoping she gets her spirits up she has been through a lot.  The pain I was having this past weekend just disappeared on Monday so I never called the doctor.  Then today pain returned, and I can feel some abnormalities under the skin.  Kind of like little bumps and one place almost feels like a staple.  I have never felt this before definitaley new.  I guess it could be new scar tissue????  Anyone else have these strange feelings under the skin.  If anyone else has had anything else like this let me know.

Jen

Posted 2/4/2010 1:50 AM (GMT 0)
Jen, not sure about the little lumps, but when I had my sacralcolopopexy, I had ALOT of stitches in my vagina....there was raised lumpy like knots where the stitches were. My doctor told me it was normal and they eventually smoothed out and went away. Not sure of this is the same thing, but just wanted to share what happened to me.

Butterfly, have you found out about the main difference between the k pouch and bcir? I am just curious because it seems like more people have the k pouch, but I am not sure if this is true or not.
Posted 2/4/2010 1:56 AM (GMT 0)

My little lumps are new......I had surgery in October and then again in November.  Seems like stitches should not pop up now????  Who knows....stuff like this bothers me.  I think one minute everything is going great then all the sudden something happens.  So aggravating.

Jen

Posted 2/4/2010 2:10 AM (GMT 0)
Jen, I would call the doctor. I didn't realize the surgery was in November, wow, time flies. I noticed my lumps by the 2nd week after my surgery. Anything new is reason to worry and I would want my doctor to examine me if it was me. Better to be safe is my motto. How are you doing otherwise? Are you still constipated? Did you have the total colectomy? How is your nausea and vomiting? Have you gained any weight?
Posted 2/4/2010 2:30 AM (GMT 0)
I had a total colectomy on October 26, 2009 and then on November 17, 2009 had emergency surgery for infection. The first surgery was laproscopic the second of course they cut me open. I am not constipated at all. I usually go to the bathroom between 4-6 times a day. I am nauseas everday and take zofran for that. I take Remeron for my gastroparesis and slow motility in the small intestine. The Remeron and Zofran I just started taking this past time in the hospital which about a week and a half ago. My weight is about 105 to 106 I am eating well but not gaining weight.

This pain thing has me worried along with the bumps. I have a lot of pain when I push on my abdomen not only in the bumpy area but a lot around my belly button. I will definitaley call the doc in the morning if still in pain.

Jen
Posted 2/4/2010 4:28 AM (GMT 0)
Is there anyone on here who had a sub-total colectomy with ileo-rectal anastamosis and actually feels pretty good now? I am looking specifically for someone who had their surgery at least 6 months ago and now feels like they live a pretty normal life. I do have some good days and I do "count my blessings" on those days. There are far too many days, though, when I feel so ill that I just stay home all day by myself and get very little accomplished. Then I get so depressed because I am no longer in the mainstream of life! I had to quit teaching 2 years ago because of all of my stomach pain, digestion problems, etc.. Now I am housebound a great deal of the time because I almost always feel like I have to have a bowel movement (constant pressure). After many bathroom trips I finally start feeling better (no more rectal pressure) but then I start feeling weak after a while because I have no food in my system. If I want to go anywhere or be with people though, I have to go without eating for long periods of time! Also, I have experienced this weird "hot/cold," hot/cold, sensation ever since my surgery back in April '09. Sometimes I feel like I am freezing, I put a coat on (in our warm house) and then I feel that parts of me are really hot and parts are still cold! I am so tired of this. I just want to feel normal!!!! Also, I think because I pretty much have to now live on Lomotil (6-8 per day) and Vicodin (two 750mg tablets per day), I think these meds are really affecting me mentally (depression). Does anyone have any answers for me?

Thanks,
Gilda

Thanks,
Gilda
Posted 2/4/2010 4:48 AM (GMT 0)
Gosh Gilda I wish I had answers. I feel I am in same situation. I had my surgery in October and still feel like crap. I have been hospitilized 5 times since the initial surgery. I am tired all the time and lately including now have terrible stomach pains. I have taken two 500mg vicodin just a little while ago. I would love to know when I will feel normal again. Hopefully one day we will feel good.

Jen
Posted 2/4/2010 6:55 AM (GMT 0)
Hello Friends,

My pain has greatly improved since I posted last. The only thing that I have changed is that I am only going from my bed to the couch and back in forth all day and night (and of course to the bathroom). I am not doing any household chores or leaving my house to go out anywhere. I can't say for certain that doing less is why the pain isn't as severe or if it is just time passing by that has helped. Today, I am 4 weeks post-op and I feel very weak and fatigued. I am thankful for still being able to go to the bathroom!

Remember awhile back I was asking how to change the signature portion of my posts. Well, I was using Mozilla Firefox for a browser instead of internet explorer. Under Mozilla Firefox browser there is not a selection of tools to change any of the signature options. Anyway, I thoght maybe some of you might get a chuckle out of me explaining this to you because my questions regarding this had to seem so strange when all of the options are clearly right there when using Explorer.

Lizzie, I am still praying for you and I hope you get to go home real soon. You are such a sweet person to try and help all of us on here with our situations when you are in the hospital!

Rosemary, I am so happy that you are having a great time on your trip and staying well! Even on vacation you are still reaching out to all of us and guiding us through. You are such a blessing!

Gilda, Are you still taking the Xifaxam? I wonder if this has anything to do with you being hot and cold. Also, are you taking any hormone replacement therapy? I only ask this because I am on premarin and it has a thick coating on the outside and I am not sure if it is getting into my system because my colon is gone? Aren't there some medications that we can't take if they are extended release or sustained release? I don't know if sustained released is the correct word or not. Have you taken your temperature during these temperature changes? I do know that Raynaud's Syndrome can cause this to happen. Maybe you can google this and see if your symptoms match. Being at home and not going out certainly does make me feel depressed and disconnected.

Jen, how is your pain today?

Marisa, how are you doing?

How is everyone else doing?
Posted 2/4/2010 12:38 PM (GMT 0)
answers4meTDR, I've learned that the K-pouch procedure is performed in many more places than the BCIR. The BCIR is a revised K-pouch. The K-pouch has had problems with alve slippage in the past; hence, the BCIR was introduced and has a different kind of valve.

I know that there are 2 main places that the BCIR is done, is in St. Petersburg, Florida and Los Angeles, California. I have heard that if you have problems with the BCIR, you have to go back to the surgeon that did your surgery, so you may have to travel depending on where you live. The k-pouch is performed in more places, so if you have problems it may be easier to find a doctor to help you.

I am waiting to hear today, from the Palms of Pasadena in St. Petersburg, whether or not I will be a candidate for the BCIR. I live in Florida, so it wouldn't be much of a problem for me if I needed to get to the surgeon. If you want to learn about BCIR, you can go to www.bcir.com and they have an awesome website.

butterfly
Posted 2/4/2010 3:28 PM (GMT 0)

Gilda,

I'm almost afraid to post this, because every time I say I'm doing well, something happens!  However...I had my surgery last March.  I've had continued problems with constipation, but I've found that if I take miralax 2x a day, as well as a small amount of metamucil, I can leave a fairly normal life.  I just went away for a 3 day weekend and attended a charity event with dinner, auction, concert and was able to eat dinner and sit through the entire program!  I took 2 lomotil to stop me from having to go after dinner, but when i got back to the hotel I took the miralax and metamucil and things were fine.  I don't eat alot during the day, but if I don't over eat and take the miralax and metamucil I do pretty well.  I eat pretty much what I want, salads come out looking like salads, but I can eat them now.

My biggest problem after surgery was the rectal pressure I felt--like I always had to go.  For the first 3 months I did go about 15x a day, but then it slowed down, but I started getting the rectal pressure.  Miralax helped, but often made my rear so sore, so I added just a small amount of metamucil and that seems to firm it up enough to not be liquidy.  Without taking both of these, I have a horrible time getting stool out of my rectum. 

It's been a long 11 months to be sure....but I do feel much much better than before surgery.  I have no idea how long this combination will work, but for now I'm thankful!!  I hope one day you'll feel the same way.

Does anyone know why my post goes all the way to the end of each line?  I have no idea what I've done!

 Janie

p.s.  guess it doesn't show up that way, but when I type the lines go to the very end of the page!


Posted 2/4/2010 6:02 PM (GMT 0)
Gilda, I too had a total colectomy 5/09.  Spent 24 days in the hospital.  Many complications.  Atrialfib, clot in my heart, blood infection, abdominal abcess, esphogitis, and malnutrion.  It was a rough ride.  Went home using TPN, home health, diapers and a walker.  Nine weeks after surgery I was back to work 1/2 day,3 times a week.  I was afraid to leave the house, but forced myself to, always knowing where the restrooms were located.   Regained my strength by going to physical therapy and walking Target with a cart.  My husband never left my side and pushed me everyday.  I am still using the pot 3-10 times a day, pain free.  I have excellent control.  I have learned to stay away from fresh vegetables and fruit, nuts and raisins.  I'm not on any pain meds and only use Immodium if we are going on a long trip.  I have been back to work full time since the end of August.  Life is a challange, fatigue kicks my butt daily and the butt burn is awful.  I will take all those problems over the pain I had before surgery.  It is hard getting up @ 5:45 every morning, it would be much easier to stay in bed.  I am so blessed to have had the most incredible team of doctors to care for me.  Life is good now. 
Posted 2/4/2010 10:11 PM (GMT 0)
Gilda,

Are we allowed to give out our email addresses? I would like to give you mine if that is okay so that I can ask you a few questions?

Please let me know.

Thanks!



Sorry matie, but your signature needs to be edited to be limited to 10 lines only as per Forum Rules - Shaz

Post Edited By Moderator (Shaz032) : 2/12/2010 4:26:45 AM (GMT-7)

Posted 2/4/2010 10:14 PM (GMT 0)
Gilda, Judy posts here and she is a true success story for the total colectomy. I hope she comes along soon and posts back to you. She has other health problems, but is doing wonderfully in the pooping department. I don't think she has to take any laxatixes or antidiarrhea meds and has one bm a day pain free! Have you ever considered the ileostomy, k-pouch, or BCIR? Many people have resorted to one of these because of their quality of life and not being able to lead a normal life. I AM ONE OF THEM! I just want to have the surgery and get it over with so I can start living. But, I still need to do biofeedback 1st!
Posted 2/5/2010 12:34 AM (GMT 0)
Well, I heard from the BCIR staff in St. Petersburg today.  They said that because of the severity of my motility disorder, the scar tissue that I will have from my prior 3 surgeries, and the difficulties of my surgeries last summer that I am not a candidate.  I cried because I was really hoping that I could have the BCIR procedure.  They told me that unfortunately, the Brooke Ileostomy would be best for me.  I had my heart set on the BCIR, but I guess that I'll have to adjust anyhow.sad

 

butterfly
-------------------------------------------------------------------------------------------------------------
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07
Diagnosed Colonic Inertia 05/07
Total Colectomy with ileorectal anastamosis at Cleveland Clinic Florida 8/07
Constipation again 3/09
Ileostomy with obstruction 5/09
Emergency surgery 6/09 ended with 3 fistulas , a feeding tube, 3 jp drains, and a leg bag with tube attached to small intestine (52 hospital days)
3 blood transfusions 6/09
Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10

Posted 2/5/2010 2:29 AM (GMT 0)
Butterfly, I am sooooo sorry! I know you had your heart set on this procedure! But, look at Rosemary...she is living life to the fullest with her ileostomy and you will too. The ileostomy will be much better than the leg bag I am sure.

I got the information in the mail today about the BCIR and I actually cried and felt very sad that I am even being forced to make such a monumental decision. I live my life in a constant state of depression and all over not being able to poop. I have cried my eyes out!

I JUST WANT TO BE NORMAL!
Posted 2/5/2010 2:43 AM (GMT 0)
Hey girls!! Have not been feeling so well so I have not been on here for a while. I went to a liquid diet again and now I am feeling better. This is a common thing for me. I will do ok for awhile and then all of sudden not so good. If I go to liquids and give my system a rest then I do better. I dont know...... I think I am one messed up chick!! I am still nauseated daily, but the phenergan does help that.

Sound like Lizzie may be able to come home tomorrow. I am so excited for her. She has been through so much!

Jen, I hope you are feeling better. I think your weight will come along. I am still not at the weight I was before surgery and its been since June. So, it will probably just take time. Are you going to go back to work? I had to cut a day out cuz it was just getting to be too much. So now I have Tuesdays off.

Tracy, I am so with you that I just want to be normal! All this depression about pooping!! Who would have ever thought? How would it be to just go in and sit and go. For hells sake!!!
Posted 2/5/2010 2:49 AM (GMT 0)
Sometimes I feel like I am losing it! And that stupid doctor said, "well, it's not cancer"! Then why do I sometimes feel like this will never get any better and I just can't take it one more day?

I sure hope there is somebody in this world researching motility disorders because we all need some help here.
Posted 2/5/2010 7:49 AM (GMT 0)
Hi Everyone, It is kind of late and I am very tired so I will make this short, but sweet! Thanks to all of you who responded to my desperate plea for some good news. I really do have some very good days and I know I have to be thankful for them because prior to my surgery I felt sick pretty much all of the time! I will write more tomorrow or Saturday but I should get some sleep when I can! You are all wonderful and your responses were helpful and made me feel understood! I will keep praying for all of you and hope that scientific advances will be made (and soon) in the area of intestinal motility problems. We could all use a break! Lizzie, I am very glad that you are doing better. I hope you can go home soon!

Gilda
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