TOTAL COLECTOMY PART 32

Hi Kristen,

I think you started the thread correctly.  Gone through Chilean Fjords, saw penguins today in a rookery.  Tomorrow trip to Tiera Del Fuego on end of the world train.  Then, we enter antarctica.  Sure hope I stay OK.  Am worried for Lizzie and skimmed all your posts.  Will post more later.  Wishing you all well.  Keep praying for me.  Yesterday was my birthday and I was 54.  Ate dinner with a really cute guy then danced real late.  It was awesome.

Rosemary

Karen, CONGRATS on your kids' weddings! i'm so happy for you and your family! thanks so much for responding. you don't post much, so i always assume you're just doing good, but sounds like things are not so simple for you either. actually, i was under the impression you were happy with your loop ileo and wish to keep it, but guess i was wrong. i can't believe your NHS is putting you off for SO long, it's truly upsetting. but i think you should schedule a head already, so maybe till the weddings are over, your date for reversal will arrive..? set an appt to the surgeon now. if you do have the reversal, i hope it works for you. i'm kinda hopeless, cuz i don't have faith that there will be much to do with me to improve my issues esp after a surgery like this, and as far as i understand from all of you who have an ileostomy, it's not that simple either, you too also have your struggles with blockages and stuff. i just don't see there's a real good way out of this miserable condition. i hope i'm wrong and we can all feel good some day. ppl can't see that im depressed, i don't really show it, but i just cry when i'm by my self, i just feel helpless and hopeless as to being cured ever from this dreaded intestines broblems. it controles my life and i don't see the light at the end of the tunnel. i should just go to the dr already. i have an appt to see my internist this monday to discuss champix and how to quit smoking, but just 2 days ago i've read that one of the side affects of this drug is depression...... and the dr on that forum said if someone already have some depression then he shouldn't use this drug :( so for someone like me, who already have depression, it's not a good idea and now i don't know how am i going to manage quit smoking if i can't take this drug. anyway, maybe there's a different drug i could try. Karen, love you old friend!! and i do hope that there are much much better and brighter days a head of you SOON! you're such a compationate and caring person and i think you deserve to be happy!! wishing you all the best always!! KC, to answer you questions, i felt ready to go back to work after 5 weeks, but couldn't cuz it was the holidays here in israel, so i could go back when they were over, which was exactly 2 mons post op. i got out of the house for hrs after 4 weeks and had full controle when i felt the urge to go till i find a b/r. for me the stools was formed most of the time already in the 2nd week post op. i would have a liquid bm once or twice a day, but even with liquid bms i still had full controle. the best way to know if your rectal muscles are working right is to ask your dr to do a manometry test or even an EMG test before the surgery. do you have controle issues now? Rosemary, HAPPY BIRTHDAY GIRL!! dancing with a cute guy sounds like a nice way to celebrate ;) hope you're all having a nice weekend!

hey, i have a question to Butterfly, Rosemay and Karen. what size is your bag and how many times a day do you empty it? do you empty the bag when it's really full, or even half full? thanks!

Hodaya, I feel your pain with the smoking. I want to quit for health reasons....like I have a cough and can't get rid of it. But, I almost don't think I REALLY want to quit because I soooo enjoy it. But seriously, I am going to try the chantix, but will not take the full recommended dose. A friend of mine took chantix, but cut the pill in half. The 2nd week, she went to work and suddenly realized she forgot to smoke before she got there. She was overjoyed and has been a non-smoker for 18 months now. She never took the recommended dose because she was worried about the side effects. But Hodaya, there have been people too that have commented about the emotional positive effects of chantix. All we can do is try it and quit taking it if we start wigging out.

And I think our depression is situational depression. Anybody in our shoes would be depressed.

I am still leaning towards the BCIR, I just wish I didn't have to consider something so dramatic and permanent.

Does anyone know how Lizzie is? Can she eat now? What about throwing up? Has that stopped since she got the k-pouch?

Rosemary, can you tell me what a gastrograffin enema is like? It's the final test that I have to take on February 16th at the hospital. Also, your cruise sounds wonderful! My husband and I have seen most of the Caribbean and the Bahamas that way, too, and absolutely love cruising.

Hodaya, my bag is unlike other ileostomy patients, but I'll tell you about it. I usually empty it about 5 times a day. I know when to empty it, because it either blows up like a full balloon full of air, or it gets heavy and pulls my velcro straps downward on my leg. My bag is a foot long, but regular ileostomy bags are much smaller.

I am sorry that you're having such a rough time. Unfortunately, there aren't any easy answers for people like us. I've been really bummed since I found out that I'm not a candidate for BCIR surgery. I keep trying to tell myself to stay positive and focused and it will get better. I realize that I have to have an ileostomy for the rest of my life. I just pray that Dr. Wexner is able to help me. I see him March 8, and am ready for that date.

butterfly
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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

Hi everyone,

Marisa, I sent you a request to be a friend on facebook. I don't use it alot, but it was nice to put a face with a name. Your family is beautiful, and so are you!

Miralax has been a life saver for me. Without it I just have the poop sitting there in my butt. I'm sorry about your 20+ times, I know the sore butt feeling! On a normal day with the miralax how many times do you go? I still go about 8-10 times a day, I take miralax 2x a day. I would love to get to the point where I could go 3 or 4 times more at a time, but this is so much better than before that I don't want to complain.

Lori,
I know you must be disappointed in the news about the BCIR, but honestly with all your problems, and the way your husband felt about it, maybe a regular ileostomy is the best for you. I pray you'll be able to have the surgery and that it will be your last. I'm sure anything will be better than that leg bag you have.

Rosemary,
Sounds like you're having a wonderful time on your cruise! I'm ready to go on one now, but we went away last weekend for 2 nights without our little 8 month old puppy and we both missed her so much I'm not sure we'll leave her again for awhile. We were going to fly somewhere next month for our 25th anniversary, but now I think we're doing a road trip with her!! LOL

Hodaya,
I hope your supplements help honey. If not, give the miralax a try. Honestly, it will most likely change the way you can eat and you'll be able to eat more and be more comfortable. I don't like the fact that I have to take something to go either, but it's still so much better than not being able to go at all and feeling miserable.

Is anyone getting snowed in this weekend? My family in Northern VA sent pics and while it's beautiful, I'm not the least bit jealous! It's cold enough here in Florida!

Hope everyone else is doing well and having a great weekend.

Hugs,
Janie

Hi again, I think my other post was lost. To answer some questions: my bag is 10-12 inches long and I empty about 7-9 times per day. Depends on what you eat and drink. Yeah, I love this dance thing. Dizzie from all the motion and motion meds. Be back later. Rosemary

Marisa, thanks for the update on Lizzie, sounds good so far, hope it keeps that way. hope your bms slowed down some and your poor bum feels better ;) Janie, thanks my love! i love snow, but i live near the beach, so we never have snow here, but there was some in Jerusalem and other mountenous parts of our country, i didn't get the chance to see it though. KC, thanks for the advice. yes we do have the nicotine patch over here, but i havn't heard much success stories with it. i'm glad it helped your mom though. i will see my internist tomorrow, so will see what to do. he'll probably suggest support meatings with other smokers, but i don't really have the energy to go to one after work. by the time i finish work i get so tired all i want to do is go home. i think i'll just try these pills and if they don't do me good i can quit. they are very expensive though. thanks for your responses about the stoma, butterfly and Rosemary.

Hi all,

It's only 30 degrees here and bumpier in the drake passage. We will only warm up when we
head north toward the equator. Right now it feels like i'm back in Massacusetts. However, a
recent email from Massachusetts said it had been minus 3 degrees. BRRRR!

Rosemary

Marisa,
Thanks for scoop on Lizzie! This sounds promising that she could eat some and it did not make her sick. I wonder if what she had was small bowel adhesions that the BCIR docs lysed away when they did her surgery. I continue to pray for her like the miracle she is beginning to experience.
Rosemary

What is segment colectomy? Is that removal of only part of the colon? Because those of us with colonic inertia usually do not fair well with only partial resection. We need the entire colon removed for the surgery to work. Even a small section left can lead to further problems with constipation.

What do you mean the constipation has gotten worse since September? Do you mean you have infrequent bm's with miralax, or do you have issues getting the bm out of your rectum? Have you had a defecogram to check to see if there is any problems with your pelvic floor?

Because I have colonic inertia and a pelvic floor dysfunction which is called anismus. I can make myself have a bm everyday if I take large quantities of miralax, but I can not push down to get it out of my rectum It is literally hours sitting on the toilet, the use of suppositories, and manual removal of stool...

Welcome to the forum. You have found the best group of women. Glad you found us. And you can search the past posts for total colectomy part 1 through 32 and read many womens experiences with colectomies for constipation.

Tracy

Post Edited (answers4meTDR) : 2/7/2010 1:58:33 PM (GMT-7)

Oh yes, embarassing is the story of my life. It took me forever to tell the doctor that I can't get the stool out of my rectum. After I told one doctor, I just said F this and have told every doctor that I have seen, 100% honesty has gotten me atleast diagnosed....now what to do?????

How much miralax are you taking? I take a 30 dose bottle over the course of a week. My doctor told me to take as much as I needed because bowel movements are mandatory. This atleast melts the poop down in my colon and will keep it from being hard as rocks.

I have always had constipation problems and a mild outlet problem...it was after my hysterectomy that my outlet problem became almost unmanageable! It takes forever to get out a teaspoon of poop. All I can say is my life revolves around sitting on the toilet. I work, come home sit on the toilet, then go to bed, than wake up to start all over again. I have 4 kids and a husband and we are all sick of it.

I tried the zelnorm and the amitiza....neither helped me and both made me nauseas and gave me horrible insomnia. I literally could not sleep night or day when I took them. UGH

When your rectum gets impacted, have you tried to scoop the poop out??? I know, very disgusting, but, that is what I do....if I didn't do that I would surely die because no amount of pushing moves anything out.

I have the pain and bloating too. Mine is usually left sided pain though. I think this is because when I had the transit marker test that all of the markers were on the left side....15 in the ascending colon and the remaining in the transverse colon. But my stomach will bloat to the point of looking 6 months pregnant. I have resorted to wearing sweat pants to work everyday, I am a bus driver, because any tightness of my jeans on my stomach causes the bloating to get so bad that I can't hardly function because the pain is so bad.

I also have much difficulty passing gas. Do you?