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TOTAL COLECTOMY PART 32

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Posted 2/7/2010 11:28 PM (GMT 0)
Oh Jen, I am so sorry. Are you having good bm's? Could you not be going enough like Lizzie was? Do you take zofran? That is what I take for nausea and it helps me a lot. I absolutely hate to throw up! EWWWW Were you throwing up a lot before the colectomy?

Nancy, so good to hear that your surgery went well. Was it very painful? I am looking into having the BCIR procedure and am really worried about the pain! But hey, no pain, no gain, right? LOL
Posted 2/8/2010 2:02 AM (GMT 0)
What2donow - I have the exact same problems. My doctor suggested the full colon removal. I too didn't have luck with Amatiza. I go back on the 15th to the dr. However, I am going to call tomorrow to see if there are any other tests he needs to do. I have not had the defectogram, but don't have issues pushing out the hard poops I have now.

Today was a horrible day. Severe nausea. I finally had a BM after taking several correctol, but that made me feel even worse. Every time I touch my upper abdomen (under my diaphram) it triggers pain in my lower ab and severe nausea. I just don't know.

Jen, you don't deserve to live in constant pain, keep fighting. I had go to a completely different doctor in a different area to find out that I had colonic inertia and an elongated colon. It is 50% longer than the norm.

KC
Posted 2/8/2010 2:09 AM (GMT 0)
KC, oh correctol makes me sooooooooooooooooooooooooooo sick when I take it. And it lasts for days. Have you tried mega doses of miralax? It can take days to work, but once you get it in your system it usually works well to keep things moving...atleast it does for me. I also get nausea when I get too backed up.

And my poor daughter will get so constipated that she will throw up and throw up and can't even keep down a sip of water. She is now on a daily regiment of miralax so we will how she does with this.
Posted 2/8/2010 2:24 AM (GMT 0)
Hi Ladies!

So much to catch up on.. I'll have to catch up more tomorrow.

To the 2 new ladies... I really don't know what the answer is! Many ladies here have had their whole large colon removed.. but are back here posting with trouble and constipation again. Seems like a lot to go through with little results... but continue reading about my subtotal - where they removed 18" (all of my sigmoid and part of the upper rectum)

I have what they called an "extremely" redundant colon (plus a prolapsed rectum and other pelvic floor issues). The barium enema I had took over 2 hours - and they could not get it all into my ascending colon because the transverse was so elongated. (I have posted pictures here of the barium enema). Anyway.. long story short.. I'm 8 weeks post op from having 18" removed, rectopexy and rectocele repair. I felt at first things were going great (I had diarrhea using 3 doses of MiraLax a day) but it was better then being constipated. As time went out - I felt I was straining more to go, so for the last few weeks I have been trying as hard as I can to fins a "happy" dose of MiraLax and fiber. If I miss it - or don't take enough - I stop going. If I take it, and it is working - I still can't seem to get it out unless I use a suppository. I'm sad.. I thought I would have a bigger improvement, but I am now thinking that this is as good as it will get. It is better then before surgery - and maybe , with time, it will improve more.. but as of today - I'd say I have a 20% improvement.. so take it all out or take part of it out.. it doesn't seem to help us! (gee - this was NOT an encouraging post!)

I really felt I'd be a success.. went into it 100% positive that I would be greatly improved, but here I am.. doing the same old things to have a BM. I decided I'm going to live like this until I just can't go at all. I mean.. I can have a BM with the Miralax & suppositories 1-2 times aday. I do think if they were to take an x-ray after I went, they would find a colon full of stool.. just like before. My abdomen is bloated everynight.

Anyway - it's late - I need to catch up with you all!
Posted 2/8/2010 2:56 AM (GMT 0)
jenise
thanks for your honesty, I appreciate what you had to say. I guess that is my biggest concern. That I go through with the surgery and I am only a little better, or worse yet I am worse off from where I started. There are soooooo many possible things that can go wrong with surgery. My worse fear is that I have the surgery and still no better off. The surgery will be such a burden to my job and family, and if it doesn't work where do we go next. I really do not want to end up with an ostomy. This is such a big decision. I am so glad I have you all here, to hear your stories, your success, and failures.
This is such a help, Bless you all.

Thanks

what2donow
Posted 2/8/2010 3:02 AM (GMT 0)
Jenise, I don't know what to say. It is just so sad we have to go through this all over pooping...

I agree with you though, as long as the suppositories and miralax work, then I wouldn't do anymore surgeries either. It is just too hard on the body and not to forget scar tissue and adhesions that can build up. UGH

That is why I have decided to have the BCIR and just have it all done at once. It is a large cut, straight down the middle and that scares the bejeesus out of me, but I can't see having the temporary loop ileostomy then hoping the anismus miraculously goes away, then having it reversed, then total colectomy, and then still ending up having to have the permenent ileostomy. There are just too many variables in there for me and besides, my doctor doesn't seem to hold out much hope that the anismus won't rear its ugly head even if biofeedback did help. He seemed to think if I saw any improvement with biofeedback, that it would only be temporary.

That leaves me with a bad taste in my mouth because too many surgeries equals scar tissue, adhesions, etc.
Posted 2/8/2010 3:11 AM (GMT 0)
answers4meTDR
I can only take the miralax once a day or I get horrible cramps. Its such a balancing act. To much and I have horrible cramps and frequent small thin ribbon-like stool, not enough and I blocked up, have cramping, and I to have had to manually remove the impaction. I have no problem passing gas, what I have a problem with is I get to much gas with all the laxatives and fiber I need to take. I work in a close environment and can't always get to a bathroom. when I do its the locker room where we all change cloths so it is hard to relax. By the end of the day I am so bloated and uncomfortable. Its a nightmare.

what2donow
Posted 2/8/2010 5:53 AM (GMT 0)
answers4me I am able to have 4-6 bm's a day but many times have to use suppositories. I take Miralax occasionally. The docs have me on zofran and phenegran for nausea. I have to take these daily because I am nauseas everday. I did throw up prior to surgery but it was not daily more like once a week or so.

I don't know what is going on now. I have pain now everyday and the throwing up occurs every few days. I do have gastoparesis and slow motility in the small intestine which they think is what is causing the nausea. As for the pain nobody can tell me anything. It is just frustrating because when the pain gets really bad, and I start throwing up I get dehydrated and end up in the hospital. I don't know what the answer is but something is not right. I am wondering if I am getting adhesions because I can feel lumps and bumps in the abdomen which just popped up this past week.

I have to go back to work at the end of the month so I have got to get better. I have been out of work since my surgery on October 26, 2009.

Its just frustrating.

Jen
Posted 2/8/2010 4:08 PM (GMT 0)
what2donow, I know several people who can't take miralax at all due to severe gas and bloating. Thankfully I am not one of them. As far as manual disimpacting, I have to do that EVERY SINGLE TIME! And it takes forever because only a small amount, like a teaspoon, will come down at a time. Yes, living like this is a nightmare. How old are you? Do you have kids? I am married with 4 kids. I am 39. I feel like a horrible mother because when I am off work, I spend most of my time in the bathroom....then, I have been depressed and am emotionally distant. That is why I think having the Bcir procedure will improve my quality of life.

Jen, having overall slow motility is horrible because there is no cure for it. I am so sorry for you! I did read about a med used for gastroparesis, but I can't remember what it was called. I will look it up for you later on today. There is also an implant that I read about to make your stomach empty faster and some people have had good luck with it. Have you looked into anything like this?
Posted 2/8/2010 7:01 PM (GMT 0)
Jen,

Get many copies of all your xrays, reports, other image tests, etc, etc. Then google Top Colorectal Surgeons. A list should come up. Call their offices and see if for a fee they reveiw cases. In your case make it clear that your doc IS responding to you with the above treatment for short term relief. But they go on to say, you wondered if a second pair of eyes on your scans and list of your symptoms might lead to long term relief. This conveys the message that you are looking for Long term help, but are not dissatisfied with your current surgeons. This way you can be gathering many opinions all at once.

Be sure and include a time line briefly enumerating what happened when. Good Luck. Rosemary
Posted 2/9/2010 12:10 AM (GMT 0)
Hi Ladies....

I have been meaning to post, but still not feeling that well. I was discharged Sat late and did not get home till 11pm. I was supposed to leave Friday afternoon, but they showed me what to do if my tube were to fall out over the next three weeks until I go back Mar 3 and after I started beleeding profusely into my back, frsh red active bleeding and I spiked a 102.8 fever. The vascular team had to stop my coumadin and Lovenox until I can get off my IV abx which I do three times a day (I am on major abx from infectious disease) and vascular was not excited to take me off the bloof thinners, but I was bleeding to bad so for now I have to have weekly ultrasounds of my arm and PICC to make sure its not spreading. I am still very very weak, but eating some. I usually have a small piece of toast for breakfeast, dry cheerios for lunch, and soup for dinner. I only get nauseated when I get the fevers. I was in bed all day today with a fever a sweats. I woke up drenched in sweat. I can barely get up to wash myself up unless the fever breaks. I am drinking as much as possible. I have to pack my three belly wounds twice a day and will get my tube removed in 3 weeks and see my surgeon. I also have to see the Infectious disease team to see how much longer I have to be on abx. Its just so hard to do anything on my own. I have been going between my mom and dads and in-laws. I have home  nursing to check my labs. when I left becuase of the bleeding my hgb was 7.2 again. I am sure this is why i look likehell and am so weak. I have lost weight. I lost all the 23 in edema plus some. I am sure I am under 100 right now. I am hungry, but just get full so quickly. I have not had time to read through everyone elses posts. This surgery will be worth it in the end...I know it, but I will not lie its harder than the TC, ileo, and reversal put together. I was inpt over a month and could have been longer. Its a major surgery, but my pouch is owrking very well so far and I hope this continues. Its pretty liquid output and I like that. I am on a low residue, fiber, softer siet for a min of 6 week,s, but I am sure it will be longer for me. I just wanted to update. Not a day has gone by that I have not thought of all of you....

Happy Bday Rosemary and I hope you are having a blast.

Love u all.

Lizzie

Posted 2/9/2010 12:26 AM (GMT 0)
Jen, for a fee, Dr. Wexner at Cleveland Clinic Florida will review your medical records.  He is a colorectal surgeon, the best in his field, and his telephone number is (954) 659-5251.  Hope this helps.

Lizzie, I am so happy for you that you're finally home and out of the hospital.  Now, maybe you can get some much needed rest.  You sound like you're doing great other than the fevers. 

I really wanted the BCIR procedure, too, but I was turned down.  Dr. Rehnke said that because of the extremity of my motility disorder, the amount of scar tissue that I have, and the difficulties I had with my previous surgeries that I was not a candidate.  It really hurt me badly, but I'm slowly working thru my feelings.

Butterfly

Posted 2/9/2010 1:33 AM (GMT 0)
Lizzie, I am so relieved to hear from you. I hope the fevers get resolved and soon. WheneverI have a fever I can't function at all. You said this surgery was harder? More painful? Did you have your rectum removed? I am terrified of having the BCIR, but really think this is what I need to do. Did your doctor tell you what the difference between the k-pouch and bcir were? They also told me when I get the bcir that it will have to stay hooked up to suction for 19 days, then I will learn to cath it. You are on the road to recovery and one day soon you will actually laugh again. Hang in there, Tracy 
Posted 2/9/2010 2:46 AM (GMT 0)

Hi Girls,

it seems like forever since I've been on here and I've been so worried about all of you!  So glad to hear from you Lizzie and that you are home!  You are truly a miracle. Always praying for you!  We brought our daughter home for a week to let her skin graphs heal from the burns and she is doing very well; all of the graphs took and she didn't have to use her own skin.  While home she used our computer and got a virus on it (you got to love our kids!! :) ) and our computer person just got back from Florida so we just got it fixed yesterday! Yipee!! 

Am very sick with sinus, asthma, etc. my dr put me on amoxicillan (something mild) due to the previous c diff but am already having diarrhea after one dose so I need to call him tomorrow to see about changing it.  Am taking my probiotics and yogurt as always but still need to be really carefull about the c diff returning. Stuff with school is still very stressfull and not yet settled but onward and upward.

Haven't gotten the chance to read all of the posts but maybe tomorrow when I'm home from school.  Miss you all and always have you in my prayers,

Judy

Posted 2/9/2010 3:43 AM (GMT 0)
so good to hear from you Lizzie. have been thinking of you and waiting for your update. i'm glad you're home. sounds like a tough struggle for you right now, but you sound optimistic and i'm so glad :) i'm still so worried about you, about your weight, the infection and all.. i'm praying this is your last struggle.
Posted 2/9/2010 4:14 AM (GMT 0)

Lizzie, So glad to hear from you.  SURE GLAD the inner pouch is working after all you're going through.  The rest sounds like a nightmare.  Thanks for well wishes.  We are turning away from antarctica as the seas are too rough.  Saw a few ice bergs; that's about it for antarctica I guess.

Jenise, so sorry to hear your news.  You did have the most extensive workup and a most positive attitude.  Just know I feel for you.

Jen, wow, hang in there girl.

Best wishes to all others too.  Love, Rosemary

Posted 2/9/2010 5:24 PM (GMT 0)
Gilda,

I was just reading back on some posts and read yours about the sub-total.  I had my sub-total 7/08 and it was extremely successful.  It was an open surgery due to many previous surgeries; I had 20+ bms to start but slowed down to about 10 a day by 6 weeks when I went back to work teaching full-time.  Was I ready, no, did I have to go, yes.  It takes a LONG time for your body to heal from this surgery.  My body was just starting to feel better the following April and I started doing some yoga then I had severe kidney issues and c-diff infection.  You will be tired, have emotional bouts, and your rectum will have that full feeling for months after the surgery, these are all normal.  Try to remember that you weren't healthy going into  this surgery and it's going to take your body that much longer to heal.  Don't worry about how much you can accomplish in a day; if you have someone that can help you, let them. You said you were a teacher, see if you can tutor someone at your house, this will put you in control as well as give you a meaningful purpose at what you love to do.  You're only six months out and you're doing pretty well so far; you're still having bms, many on here aren't..  You have good days, many on here don't, you can eat, many on here can't.  Focus on the positives and all that you can do and continue to let your body heal, I promise it will get better. You CAN do this!!!!:)

I will keep you in my prayers,

Judy

Posted 2/9/2010 8:56 PM (GMT 0)
Lizzie,
So glad you're finally home sweetie. Hoping you have smooth sailing soon!

Judy, so good to hear from you. You've been missed:).

At work, gotta run. Just wanted to say hi to all.

Janie
Posted 2/10/2010 2:03 AM (GMT 0)
Thanks for your words Judy.  I do forget how sick I was going into surgery.  I read your post to my husband and he agreed too.  I forget I still need help.  After a long day at work and many trips to the rest room I am worn out.  Would I do it all over again, you betcha.  Connie
Posted 2/10/2010 7:55 PM (GMT 0)
Hi everybody.  I am having a difficult time with my leg bag.  For the past 3 days, nothing is coming into it on its own.  We have had to push liquid in and pull it out with a syringe, and I am constantly drinking fluids.  There doesn't seem to be an obstruction, but I have been having constant headaches, but no cramping.  I'm close to calling my surgeon, but am not sure if I should bother him yet or not, but I don't want to injure my small intestines, either.confused

 

butterfly

 

Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07 and 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 and 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 and Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10 rolleyes

Posted 2/10/2010 8:03 PM (GMT 0)
Last night I cried myself to sleep, because I am so worried about my "ileostomy leg bag", and I'm getting anxious to see Dr. Wexner at Cleveland Clinic in March.  I'm getting so frustrated, because I feel that everything is out of my control and I don't want to just be another patient.  I want to feel safe and be guaranteed that everything is going to be alright, but I know that there are no guarantees with these types of surgery.

butterfly
 
Rectocele/cystocele surgery 8/06
Chronic Constipation 11/06-7/07 and 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 and 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 and Drains removed 7/09 and 9/09
Possible surgery for Brooke ileostomy at Cleveland Clinic Florida 6/10  
 

Posted 2/10/2010 11:51 PM (GMT 0)
Butterfly, please call your doctor...you may have a partial obstruction.
Posted 2/11/2010 12:54 AM (GMT 0)
Lori,

I'm so sorry you're having such a hard time. Are you drinking grape juice or some other juice? I think Rosemary (or maybe someone else with an ilieostomy) said she drank it and it kept things flowing. I know that grape or prune juice really helps things move for me. What about miralax? Is that something you can use with an ileostomy? I'm clueless about that, but I does make things flow for me. Just not sure if you can take it or not.

I can only imagine how scared you are about your upcoming surgery, but worrying won't help and may make things worse. As hard as it is to accept, it's really out of your hands now and you just have to pray that you're able to have the surgery. If you are, and if you go to Dr. Wexler, I'm positive you'll be in the best hands. I've read only good things about him. As difficult as it is, you'll just have to trust him. I'm so sorry you're at this point, but hopefully June will be here soon and everything will be so much better for you.

Just want you to know I'm thinking about you and praying things work out.

Hugs,
Janie
Posted 2/11/2010 3:47 AM (GMT 0)

Hi All,

Just leaving Antarctica so we have signal to email.  It was AWESOME.  we had to skip 2 islands due to currents but so far smooth returning through Drake Passage.  I am sooooo into the dancing and romancing; I am really not eating enough.  Am the only one who is loosing weight on this cruise.  Yes in the above post, grape juice breaks stuff down with an ileostomy.  I wish all well.  Hope Lizzie is coming along.  Sorry no time to read all posts.  We've been out of range for so long, have not checked in in 4 days and emailed is piled up.  Sincerely, Rosemary

Posted 2/13/2010 1:35 AM (GMT 0)
Quick Update:

No energy....I was in hospital last two days with severe anemia ( do not know where i am bleeding from) and pain. My hgb was 7.2 again and I got another 2 units of blood and will be rechecked this Monday my home nurse. My clot has spread to my neck so they had to pull my PICC line, but they cannot put be on blood thinners because of how bad I bled and I am already so low. My potassium and mag are still low and this is also why I was so weak. They switched me to oral abx and I will e followed by infectious disease here in Michigan. I go back March 3 to have this continuous tube pulled and start to self cath. I can barely get to the washroom to clean up and move unless my pain is under control. I am on 8 mg dilaudid every 4 hrs with vallium every 6. Good thing is the pouch is still working well. I have to flush it 4 times a day to expand the pouch. I have to pack my three abscesses daily which is very painful but my fevers have been less in the last 48hrs. I still have low grade but nothing like before. I am still positive, I just never through this would be so hard, but then again I was so sick going in and I have have had so many surgeries so close together. I have huge scars, but that ok. I am staying with my parents so they make me eat or I would sleep all day and get sicker. I have not had much time to read the other posts but I love you all....janie, Judy, Marisa, the two new gals...welcome, Hodaya, Tracy, Lori (I am worried about you....call wexner!!!!!!!) and please talk to your counselor and to anyone I am forgetting. I love you all.

Lizzie

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