HealingWell
Search Close Search
☰

TOTAL COLECTOMY PART 31

Support Forums
>
Ostomies
✚ New Topic locked
1 2 3 4 5 6 78 9 10 11
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/26/2010 10:29 PM (GMT 0)
and what about Jen?????
Posted 1/26/2010 10:48 PM (GMT 0)
Lizzie, I hope that you're doing well kiddo and I'll continue sending prayers your way.

 

Hodaya, I hope that you're constipation doesn't get as bad as mine.  I don't wish that on anybody, but maybe Lizzie will show us that there are positive alternatives to an ileostomy.

I think that there are 2 different procedures: BCIR or K-poch.  BCIR is a revised K-pouch.  I think that Lizzie is having a K-pouch at Cleveland Clinic.  When she spoke with the doctors in Florida at St. Petersburg, they perform the BCIR.  K-pouch surgery is performed in more places than BCIR.  I can only find where BCIR is practiced in St. Petersburg, Florida and somewhere in California.

 

I have called Cleveland Clinic in Florida and they also perform the K-pouch surgery, but not BCIR.  Today, I sent all of my surgical records to St. Petersburg to see if I could be a candidate for a K-pouch or BCIR.  My health insurance has allowed me to go out of network to Cleveland Clinic Florida, but I have not spoken with them about St. Petersburg.  I will wait and see my options first.  St. Petersburg is 5 hours from me and Cleveland Clinic in Ft. Lauderdale is 8 1/2 hours away.

 

Also, I sent a letter and asked about the chance of obstructions with a BCIR/K-pouch and Brooke Ileostomy.  I have alot of problems with obstructions with my tube going to my leg bag, so obstructions really scare me.

 

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 attahed 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 1/26/2010 11:54 PM (GMT 0)
Lori,
I can't remember where you live in Florida, but there is a Dr. in Orlando who performs the BCIR/K-Pouch, at least according to the bcir.org webpage. He's in the same practice as my Dr at the Colon and Rectal Center. Next time I see my surgeon I'm going to ask about that. It would be wonderful if that would be an option for you (for all of us, actually).

What are you able to eat now with your leg tube? You must just really want to be able to eat something good!!

I agree, where is Jen? And Lizzie? Hope they check in soon.
Posted 1/27/2010 12:38 AM (GMT 0)
Kristin, I'm unsure what the fistulas feel like or symptoms are. I think that they were tears in my small intestine that my surgeon sewed up the best he could and put jp drains in each of them. I was so sick in the hospital at that time, I really don't know. I do know that I had to have multiple ct scans before I could have the jp drains taken out.

Janie, I live in Tallahassee and Orlando would only be 4 hours away for me. Yes, I would really appreciate to know the Dr's name that does BCIR/K-pouch surgery.

I am able to eat with my leg bag, but it's like eating right after having a colectomy. Everything has to be soft or it plugs my tube. My tube is about as round as my pinky finger width, so I'm careful with everything. For fruits I can have applesauce, banannas, and mandarin oranges. I eat lots of yogurt with cool whip on top.. I can have potatoes and sweet potatoes without peels. I can have breads and eat tender chicken and turkey. Other meats get stuck in my tube. I am ready for surgery, whichever it is, and I hope that I'll be able to eat more fruits.

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 attahed 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 1/27/2010 2:00 AM (GMT 0)
Lori,
The doctor's name is Paul Williamson and he's at the Colon and Rectal Center in Orlando. I went to the BCIR website and followed some links that took me to a list of doctors performing this surgery. His name was on the list. I personally don't use him, but I have a friend who who colon surgery a couple years ago and thought he was great.

Hope you'll be able to eat more very soon. Have you lost lots of weight? I remember you said after your colectomy you lost quite alot; are you still losing?

Janie
Posted 1/27/2010 3:34 AM (GMT 0)
Janie,

Yes, If I could get the rectal pain resolved it would make a big difference in how I feel. I do feel much better after my TC then before because at least I am able to go to the bathroom. This pain scares me because I am afraid that it might be a sign of another problem that could lead to more surgery such as the recto-vaginal fistula I mentioned before. I am hoping that the pain is rectal spasms as Tracy mentioned earlier. Also, I want to stop taking the dilaudid pain medication but with this pain I can't.

Hopefully we will hear from Lizzie and Jen soon.
Posted 1/27/2010 4:05 AM (GMT 0)
Hi Kristen, I see that you are online right now! Boy, you were sure ambitious with your posting today. I am sure that everyone appreciates your responses and your helpfulness; I know I do! Today has not been a good day for me. I felt very ill all day; really I felt like I did just 1 month after my surgery - weak, sick, cold/hot, cold/hot . . . in general pretty awful. I went back on Xifaxan yesterday. Usually when I feel real weak and get diarrhea even worse than normal - I know I have an infection. My doctor prescribes Xifaxan for me and I just take it 3x/day for two or three days. I always feel better after that! Really I am supposed to take this drug until it is used up but then I run out and my doctor tries to "hold me back" from getting more. I hope I am not doing any harm taking it "as needed" but this does seem to work for me. Another drug that I take almost every day is Vicodin. This is a pain-killer (narcotic) and I would prefer not to take it but I need it for its "drying effect." I have been taking it 2 or 3 times a day for over 10 months now! I worry about what it will do to my body and my brain "long-term" but the Lomotil and Immodium don't work well enough on their own. Anyway Kristen, I know you asked me for some information about vitamins. It would be better if I wrote to you later tonight or tomorrow when my head is more clear; then I will give you better information! I really appreciate everyone on this Forum. I had so many years of trying to deal with all of these problems without any support . . . it was so lonely and depressing. Some of you seem to know each other very well. Have any of you ever met in person? I will be going to N. Fort Myer, Fl on Feb. 21-26th. Do any of you live in that area? If any of you come to San Diego (my home), I would love to meet also. I guess I have had to live with a medical problem that is so "out of the mainstream" for so long, I love to meet other women who truly understand what it is like. Take care everyone and of course, I am anxious to hear about Lizzie also. Hey, has anyone heard how Amey is doing? I think she had her surgery in Nov. and I haven't heard much since then!

Gilda
Posted 1/27/2010 5:14 AM (GMT 0)
Hi Gilda,

Yes, I was on quite a roll early this morning when I couldn't sleep. I have been thinking and praying for Lizzie so much that I think catching up with everyone helped me deal with being so anxious. I have wanted to since I have been home from the hospital, but hadn't had enough energy or the ability to sit for any length of time.

I am sorry to hear that you are having such a bad day and I hope your medicine helps you feel better real soon. If I am remembering correctly you had most of your colon removed in April 2009? How much of your colon is left? I have my small intestine attached directly to my rectum. It sounds like that your problem now is mostly diarrhea, is this correct? and did you have CI before the surgery. It just seems that most people on her have constipation problems as opposed to the diarrhea. I never want to be constipated again in my life! I know that is a lot to hope for.

Anytime you feel up to telling me about the vitamins/minerals is fine. Please take care of yourself first! I am also on a narcotic called dilaudid and am hoping to stop taking it soon, if only this rectal pain would go away.

I live in central Illinois so I have never met any of the wonderful ladies on here before. Actually, I just started on this forum in early Jan. so I am pretty new and trying to get to know everyone and offer support when I can. I know I am thrilled to have this forum and to have people so caring and understanding of our medical problems.

I hope you start feeling better real soon! Oh, I haven't seen Amey post.

Kristen
t
'
Posted 1/27/2010 5:18 AM (GMT 0)
Does anyone know how to change the font, color or layout of the signature section in this forum?

Thanks

Kristen
Posted 1/27/2010 6:12 PM (GMT 0)
Hi all,

Sorry I have not checked in in awhile.  I spent 11 days in the hospital this past time and got out Sunday.  I am doing better with eating but still take zofran for nausea.  I am battling anemia which is making me extremely lethargic. I am tired and have major muscle weakness.  I really haven't even felt like getting on HW is why it has been so long.  I just don't have any energy at all.  I have not been able to read all the posts that I missed, and I see there are a lot of new people on here.

They now have me on Remeron for gastroparesis and slow motility in my small intestine.  It is helping much better than the Reglan but still not a cure all by any means.  My main goals are to eat, gain weight, and build up my iron intake to battle the iron defecient anemia.

I was talking with Lizzie on FB on the day of her surgery but have not heard anything since.  When I was talking to her the surgery kept getting pushed back.  I hope she is doing well.

I will try to catch up on all that is going on HW.  Thanks for all your prayers and concerns.

Jen

Posted 1/27/2010 6:16 PM (GMT 0)
Tracy,

Great news about no pudental nerve damage.  See all those tests are very tolerable and I don't see why my 3 consults in 2006 did not know of them, especially Boston and Dartmouth.  Anyway....  Good news for you.

To everyone without a colon........am not saying go out and become an alcoholic, but try one glass of wine.  I had one last night at dinner and I had serious ileostomy diarrhea, bag after bag all night long.  I would think that even with rectal issues, if colonless people drank a glass of wine at night, it would whale through them the next a.m. or worse, keep them up all night "going."

So now I know NOT to eat the sugar free cookies on board AND not to drink alcohol.  OK so learning all the things NOT to do.  I see everyone else eating, drinking, partying and you know how different I feel.  BUT I will be satisfied to stay "well" the way I am.  Tracy if you have the ileostomy, I can tell you all the things NOT TO DO!

Hodaya, I tried to keep your type of schedule prior to my 2006 surgery:  got up at 4:00 a.m. to be ready to go to work by 7:00.  Only  the fruis of my labors were very good.  All I had to do was take mutliple walks around the block and after each I'd do a huge bowel move.  Then I'd stand up. feel like I needed to go more, walked more, then did more.  If I were you, I'd just try the Miralax.  What if it saved you all that missed sleep and just worked forever.  You never know.

I SHOULD (I know; I am using that word again) have cued into the fact that I was not stacked up with poop when I prepped for my colonoscopy and for my 2006 surgery as each time there'd be only one formed move then the rest would just be liquid stool or the bowel prep.  I think it was the frustration that made me get into surgery, but that routine was tiring as I'd been doing it for 2 years.

I don't have a good feeling about Jen or Lizzie........we should have heard some kind of update by now.  Jen has been in and out of hospital, but Lizzie I think went in critical; I wonder what they found.  I really just wonder if it was all adhesions no matter what her tests showed.  Who knows.  Hope we hear from them soon.

Tomorrow Coquimba, Chile then the day after, a 7.5 hour tour of Santiago.  I'm thinking of skipping the Coquimba tour and saving myself for Santiago.  I sure know what I will and will not be eating and drinking.  I gotta find some more immodium at some local shops.

Rosemary  P.S. Jenise, I'm due home March 17.  Am hoping all stays well.  I forgot my B12 shot and feel like crap.  I gotta go to the medical center today and get my shot.

 

Posted 1/27/2010 6:24 PM (GMT 0)
Hi Jen,

Great to hear from you. I'm posting from a cruise ship off the coast of Chile. Learning all the stuff NOT to eat with an ileostomy.

Glad you are OK. Have them do a blood test for B12 level and MMA level (Methylmalonic acid level). If B12 level is low or low normal and MMA is high, you may need monthly viatmin B12 shots. Will make all the difference in the world for you.

I missed my Mid-Jan shot and am dragging. Gotta get the vial and take it to the medical center on board and get the shot.

Rosemary
Posted 1/27/2010 7:22 PM (GMT 0)
Jen, so glad to hear from you. Thats great that you are finally home. Lets hope that you can stay there this time.

Kristen, I think you asked me how I was doing post op, and overall I feel ok. I am nauseated every day still and do have pain on my right side. So I still take Phenergan and vicodin. I do take the miralax daily and it seems to be doing the trick.

Gilda, I have not met any of these great people but I would love to. Everyone seems to have gotten so close to each other. We all keep saying that we need to go on a cruise. I think that would be a grand idea when we are all feeling good.

Well, I am at work so I better go. Just wanted to check in. Anxious to hear from Lizzie.
Posted 1/27/2010 7:30 PM (GMT 0)
Kristen, thanks for your support and understanding! you're right, we're the only ones who can understand each other best, i'm so glad we have each other :) when did you say you see your surgeon again? as for your question about editing your signature, you just press the controle pannel and it opens you a window to edit it as you like.. good luck with that, make something creative.. (: Janie, oh honey, it's really o.k, i never felt like you were lecturing me or osmething, just the opposite, i know all you want is to help and i appreciate that a lot! in fact, i was even thinking i was starting to get on you guy's nerves with my stubbornness lol. thanks for all your care and concern! it must be great to be able to eat all those foods and still go. i must give those supplements a try, but it could take couple of mons before they start working, if at all. will see how things go. Lori, sounds like you've learned quite a bit about the BCIR and the k pouch. as for me, i havn't checked it out at all yet, i'm still very far away from this decision yet. but looks like you're taking it into serious consideration. but you really should consult with as many drs as you can about having it, you should be really careful making any decisions. i hope whatever is decided, will be the best thing for you. i want all of you girls - all of us to be happy again. Gilda, wow, you're taking lots of pills.... i'm sorry you havn't been feeling so good lately. most of us still struggle with constipation issues post op and sometimes i wish i had the diarreah issue instead. BTW, all of us on here, eccept for Jenise, had our whole colon removed and small intestine attached to the rectum. i also spent 15 yrs thinking i'm the only freak in the world living like this lol! i found this site about 14 mons ago and very grateful that i did, it has helped me tremendously, even just to know there are many others just like me!!!!!! i was AMAZED to find that out LOL! i live in israel, but my sister lives in San Diago, but i don't know where exactly. i havn't had the chance to visit her yet, but if someday i will, and we'll still be in touch here, maybe we'll be able to set a date... that can be great! i see Amey's posts on facebook all the time. seems like she's doing o.k, just very busy with her FIL and MIL who are very sick with cancer and helzheimer (sp?). it can't be easy taking care of them. Jen, it's so good to hear from you! i'm glad you're home and i hope this time you're able to stay home. i don't know much if anything about all these meds you're taking but i hope they can help you well enough so you can start eating and gaining enough weight. did they try to find a source of bleeding that may cause the anemia? maybe intestinal? i'm sure it is making you very weak, i hope it is also resolved soon. Rosemary, yes, it's possible to live like i do now and like you used to. it's not really quality of life, is it? but what is there to do? i used to work in the afternoons for yrs just untill my colectomy and only now after the surgery i shifted to mornings. i seems to hold on like this for now, but i don't know for how long, or how my bowel will be like in time.... nothing is guaranteed. gosh i don't know how you manage to hold on like this, seeing everyone eat all those yummy stuff and hold yourself from eating, it would have been REALLY hard for me if i were there too..... i don't think i can ever go on cruises like these or any place with lots of yummy foods, i won't be able to stop my self from eating. that cant be good for me. thanks for your advice about taking the miralax..... but again, not yet. i'm also very worried about Lizzie and i think of her a lot during the day. i really hope we hear something soon. i hope you feel good, Rosemary, and continue to enjoy this wonderful cruise and make the most of it!! thanks for thinking of us and checking in even while on vacation!
Posted 1/27/2010 8:20 PM (GMT 0)
Hi Jen,

I am so glad that you were able to post. So many of us have be concerned about you. I understand about being home but still unable to post because of not feeling well. I sure hope the new medicine helps you and that your anemia improves. I was anemic for over 10 years before my hysterectomy. All the doctors kept telling me was to take iron pills. Well, we all know what iron does to someone with chronic constipation.

At least you are home now and it sounds like you are headed in a better direction. I hope you continue to improve and get your strength back.

Hugs to you Jen!

Kristen
Posted 1/27/2010 8:30 PM (GMT 0)
Hodaya,

This might sound strange, but I don't have another appointment with my surgeon. After leaving his office last week I realized he didn't have me schedule another appointment. I didn't even ask him when I could take a bath instead of a shower. I would love to soak in the tub and I think Tracy told me that this helps with the rectal spasms if this is what I have going on. Early this morning I woke up and had to go bm and I had a very tiny amount of pain, but it was much improved from previous days. I am taking this as a good sign and in hopes that the pain will continue and finally go away completely. I am so afraid that the bm's are going to stop though.

When I go to the control panel and edit the signature I am only able to change what is written. I can't find anyplace to change the font size or color. Maybe, I am just missing it. I will try again.

I hope you are having a good day and that we hear about Lizzie very soon.

Kristen
Posted 1/27/2010 9:09 PM (GMT 0)
Kristen, yes, maybe the pain is finally starting to go away! that would be great. but if it doesn't, then just make a new appt and ask him to make a thorough check inside, see if there's something. BUT hopefully, maybe you won't need to see him cuz the pain will disappear! about your signature: go to control panel then to edit profile then you should see above your signature there's a color change option, just above all the other options to edit. hope you can see it.
Posted 1/27/2010 11:04 PM (GMT 0)
Hi Hodaya,

If you ever make plans to come to San Diego, please let me know, then we could meet in person! I hope you are feeling better, both physically and mentally. I can relate to the post you wrote about feeling depressed and just wanting to "give up." I have been feeling that way for the past couple of days and it's miserable! It does help to come to this website/forum though and talk to others who are going thru the same thing. Acutally I guess my problem is different than most women posting on this thread but still, I can relate. I used to have the constipation/pain/bloating problems; now since the surgery I have to use the BR between 8-15 times/day! I know it can seem preferable to constipation but it can keep one "house-bound" and the diarrhea causes internal/external pain! Sometimes it just seems we can't win. I will be so glad when they can create new intestines from stem-cells. I told my doctor I want them to grow me a new colon! He said they are doing some research on that but they are a long way from knowing how to make it work. Oh well, maybe there is still hope for us.

Gilda
Posted 1/28/2010 4:07 AM (GMT 0)
hey Gilda, thanks for the invitation! are you feeling better today? the first 1-2 months after the surgery i also went about 8-15 times a day and it's pretty much house bounding, but much better than being constipated. unfortunately all of that has slowed down and now i go only 4 a day and the amounts are too small. i'm sorry the diarreah is causing you so much pain.... there's no easy way for us. i saw Lizzie post on FB that she's post op now. she said she had the surgery at 230 pm and was back to her room only at 2 am!!!! poor thing... seems like it was a long surgery. anyway that's all i know for now. i hope someone can update us soon.
Posted 1/28/2010 7:55 AM (GMT 0)
Thanks Hodaya, for the information on Lizzie at least it is some news.

Hopefully, someone will post for her perhaps her friend Darlene?.

I am praying for all and I know He hears us!!!!

Love to All

Kristen
Posted 1/28/2010 5:00 PM (GMT 0)
Greetings from Coquimba Chile.  It's cooler here, so less dehydrated. Nice tour today and tomorrow Santiago.

Hodaya, Thanks for news on Lizzie.  WOW!  Almost 24 hours in surgery (likely including pre-op anesthesia time and recovery room time.  )  That long is not a good sign.  Maybe all our combined prayers will do her some good.  Let's hope.  Prayers to Jen and all others too.

Rosemary

Posted 1/28/2010 5:15 PM (GMT 0)
Thanks for the update Hodaya! I really gotta learn this facebook thingy.. you all get so much info from it!

Rosemary - that's 12 hours! :-) I'm sure she probably was in intensive care some too.. I'd expect that!

Jen, glad you're home (again) hope you stay home and get better soon. Not the same thing.. but after the birth of baby #3 who I had such a hard time with - I hemorrhaged, and lost enough blood that I needed a transfusion - but doctor's were afraid of the big Aids & hepatitis scare on the blood, so I didn't get it. They put me on mega doses of Iron.. but it took MONTHS for me to get my energy back, and I think it will take you a several months as well.

Tracy, that is good news about the nerve damage.. now I can't wait till you find out the rest of the story!

I'm trying to look up and not finding much info on anastamosis strictures.. and I'm curious what the symptoms are if anyone knows. Getting things out have become increasing more difficult the last few days, and BM's are thinner in shape.
Posted 1/28/2010 6:44 PM (GMT 0)
Hi al...this is Lizzie's mom and I am going to update you on her condition.

Liz had a great outcome with her actual  surgery, but she has had some set backs with her recovery .

Liz has gained 22 lbs in 2 days of extra fluid that seems to be going extra cellual instead of in her vascular system. She has been very swollenand quite uncomfortable. They said they wanted to wait 2-3 days to see if her body would kick in.  So far it has not kicked in.

They removed her catheter this morning and have cut down some of the I.V. fluids. They will give her a diaretic this evening if she can not get rid of the extra fluid on her own.

Liz has also had a very high pulse rate since her surgery, she has been dehydryated( that is why they keep adding more fluids),they have now discovered a blood clot in the PIC line and her hemoglobin has dropped to 7.9.

Please keep her in your prayers!

Rita ( Lizzy's mom)

Posted 1/28/2010 7:24 PM (GMT 0)
hi Rita! thank you so much for the update on Lizzie! she is such a dear friend of ours and we're very worried concerned about her. swollen from fluids - you mean edema? cause if so, then that's no big deal, lots of ppl have it after surgeries like these, i had it too after my colectomy, it really worried me too, but it all magically disappeared and gone after 2-3 weeks. yes it was VERY uncomfortable.. i could hardly move, i think i carried about 15 extra kg of fluids. so don't worry about it, it really disappears as it comes. what does it mean having a blood clot? what does it cause? i hope they are giving her transfusions for her low hemoglobin. thanks so much again Rita!! and please tell Lizzie we all love her VERY MUCH and care about her and want her to be healthy and happy again!! we're all still praying for her. please give her a HUGE HUG from me!!!!!
Posted 1/28/2010 8:10 PM (GMT 0)
Jenise, i'm sorry you're having trouble with bms :( stricture you mean narrowing at the anastomosis? i don't know, but i think the simptoms are mainly constipation for sure. if it doesn't improve, maybe you should call your surgeon, ask him what he thinks of this. i hope it's just a set back and things improve again. i have a question, do any of you know wether frozen baby carrots have skin? i'm o.k with cooked and peeled carrots, but will cooked baby carrots be o.k too?
✚ New Topic locked
1234567891011

HealingWell

Connect With Us
© 1997-2024 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.