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TOTAL COLECTOMY PART 25

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Posted 9/15/2009 4:19 PM (GMT 0)
Hello myfriends!! At work right now and am really bored so I thought I would chat for a moment. Glad to here you are doing beter Hodaya. Its just going to take time. I cant believe you are ready to go back to work. I felt the crap for about six weeks and then went back for half days for two weeks. My surgery was open though and I think that why it took so long to feel human again.

That would be so awesom to meet you all. I wish we were not spread all over the place. Maybe someday it will be possible!!

I have been having these awful cramps in my lower abdomen. Then as they go away my intestines make a horrible sound. Like a really loud stomach growl, but I can definitly tell it is in my small bowel. Am I going crazy? This has been going on for 2 days. Any of you experience this? Its just so embarrassing because I sit next to patients ears all day long. Do ya think I need to call my doc or just wait it out and see if it keeps up?

Well-hope we are all having a great day! Better go try to find something constructive to do!

Love you all! Marisa
Posted 9/15/2009 4:39 PM (GMT 0)

Hodaya I'm glad you are doing better.  I can't believe you are ready to go back to work.  After surgery I am hoping to go back after 6 weeks but figure it might be 8.  I hope things continue to improve for you.  It gives me hope that my operation will turn out ok.

I am counting down the days, October 26th will be here before I know it.  Even though I am extremely nervous I am also ready for the misery I am in now to end.  I just took 18 pericolace because I woke up feeling bloated.  It seems like ever little thing I eat causes me to feel terrible.  I get horrible abdominal cramps for no reason.  The type of cramps that double me over.  I am so ready for this to end and truly hope that the surgery makes this better. 

I hope everyone is doing well.  I need to catch up on all the posts.  

I do think a convention would be great!

Jen 

Posted 9/15/2009 5:06 PM (GMT 0)
Marisa, i forgot you had an open surgery, well that's figures why your recovery is longer. i met a woman at the hosp who had it open, she showed me her scar, it sure is a much bigger scar and that it self takes much longer to heal. my belly is making these awful noises sometimes too. i think we'll have to get used to this background music now lol. but if you have pain along with it, then maybe you should talk to your surgeon. but it can also be gass pains. maybe you ate something different that gives you gass? you mentioned sitting next to a patient, what do you do for a living? my bikini line incision is still very sensitive to the touch and sometimes i get a burning feeling there for a few seconds, but that's no big deal. what bothers me is that at the top of my incision, just above it, it is SO stiff and protruding too. it's not something external, it's like it's under the skin or even undre the flesh, the skin looks totally normal, it's like it's from the inside and looks much thicker than the rest of my abd. it doesnt' seem to improve since surgery and it really bothers me. did any of you have this? does anyone know if there's something that can be done about this? it also feels like it's heavy for me to carry it when i walk and like it's pulling down, makes it harder for me to walk :o( my surgeon doesn't seem to think much of it. i'm going to see my internist tomorrow and i'm gonna ask him what he thinks about it, but thought maybe you guys know anything about this from your own experience. hope the cramps are over soon Marisa! feel good!
Posted 9/15/2009 5:24 PM (GMT 0)
Jen, i truly believe you'll do just great! you'll be much better off w/o the colon. even tho i had some probs, i DEFINITLELY feel i totally did the right thing. in our condition there's nothing more right than having this surgery. our colon is totally not needed anymore. my stools is formed w/o it, so it means my smalls are absorbing the water just fine. all of these cramps you're having now will be gone post op, cause they're all coming from the colon from all the mess inside it. yes i feel ready to go back, it's driving me nuts staying at home. i'm already 4 and 1/2 weeks post op and in 2 weeks i'll be 6 and 1/2, so that's o.k. at least it's good enough for a desk job. well feel good everyone.. i've been eating TOO MUCH today!!! blahhhhh
Posted 9/15/2009 5:31 PM (GMT 0)
Jenise..... good luck with your defogram today!! praying for you!!
Posted 9/15/2009 7:12 PM (GMT 0)
Hi everyone,

I am back from the dreaded defecogram... but it wasn't as bad as that last one in the other city (where 2 young tech's did it, and stood right next to me the whole time!) BUT.. I am more confused now as to what everything will be done. The test was done and they only look at the rectum (therefore - that is the reason the sigmoidocele was missed first time at this facility) He said he did not see a rectal prolapse (but I do still have some protruding through the anus.. but maybe it's hemorrhoids?) However, the last test done 2 months ago (in the different city) indicated that I had a small rectocele remaining... but this test - he said I had a large, non-emptying rectocele that should be fixed. This facility had me strain , squeeze and relax (other did not test this) and he said my muscles were good and strong - thank goodness! But - I strained and strained and could not empty the paste.. so I don't know if the doctor will attempt to fix this as well... or if the mesh will cause me to live with it forever. I wonder if the doctor will even call to discuss... but I am not expecting him to.

Then I went to my pelvic floor therapy.. got here, filled all the papers out, and then find out - they are not in my insurance network! So I left.. and I have a list of others I will have to try and see if they accept my insurance.

Jen, our dates are fast approaching! I have always tried to stay away from swallowing laxatives.. as I was always afraid! Have you tried MiraLax? The GI doctor said it is safe to double up on the dose, and I have tripled it at times .. it does help (but can take a few days). I never got any relief by eating fiber, fruit or drinking warm prune juice... but the MiraLax and my fleet - they are my friends!! LOL It's an awful feeling to know you have to go and can't!

Hodaya, I am amazed at how well you are doing! I asked my uro-gyn doctor if recovery from this surgery is tougher then the 8 hour surgery he just did.. without hesitating he said yes. My last surgery was via Lap too.. but I was so wiped out for about 4 weeks... at 6 I felt pretty good, and felt like I could have returned to work if I had too.. but 8 weeks is much more appealing. Take it easy - don't rush things!

Marisa, glad you are feeling so much better! As far as those sounds go.. I don't know what causes them, but today I have them too! It's embarrassing! I was thinking it was the barium enema.. or something I ate, but they can be heard 10 feet away!
Posted 9/15/2009 8:22 PM (GMT 0)

Hi all....

Been gone since 5 am Fri and haven't had a chance to read through everything.....just skimmed. I flew in today and came to work. We were delayed a day d/t rain for the US open. My husband and I had a blast exploruing NYC and witnessing the US open. I had a lot of issues with my bag....changing almost 4 times a day, bad burning...the norm. I am also having severe panic attacks....daily and at night. I think I am so nervous for my surgery......

Hodaya- glad the pooping is better.....love you dear....

Jenise- what confusiong results you have had with your defecography...

I am going to have to read up. Love you all.

Lizzie

Posted 9/15/2009 10:20 PM (GMT 0)
Jenise I have tried Miralax along with every other med on the planet. I have taken basically an entire bottle (14 oz. size) and put it in a gatorade. It takes days to work and it blows me up and makes me absolutely miserable. With the pericolace I can take the 18 now was 10 last year and have relief within 12-18 hours. I know the Miralax is the safest, but I can't work for days after I take it because I blow up so bad that I am miserable and can't wear my clothes. I am a child care inspector so I am doing a lot of walking and moving around at least 3 days a week. It just doesn't work. I will be so glad not to have to try to work my entire life around going to the bathroom. Nobody seems to understand except for you guys(and my husband) what we go through. It is tough, and I am tired! I took my 18 pills early today and feel so sick right now and need to do things around the house and with the kids but just can't for feeling so bad. Truthfully at this point I think that even if I ended up with a bag it would be better than the way I am now. Okay enough for my pity party.

Lizzie I am glad you had fun in NYC! I am sure that you are nervous as we all are with upcoming surgeries but you just have to be confident that things will go ok and you will be better. Just try to stay positive!

Hodaya thanks for your encouraging words. It really helps me to focus on the positives.

Hope everyone is doing well.
Jen
Posted 9/15/2009 11:06 PM (GMT 0)
Hi Lizzie, you're home! Sounds like you had a wonderful time (minus your bag issues!) I can imagine how stressed you are with your surgery just around the corner! Hang in there...

Jen, you poor girl! You sound miserable! I don't think I have ever been that uncomfortable, as I usually do find relief with double doses of MiraLax and my fleets! I know what you mean though about not having anyone to talk to except for here.. and I actually kept it as a secret from my husband until about a year ago... I was embarrassed!

I just viewed my video of the defecography and looked at the last one I had 9 months ago at the same place. The rectocele looks the same! upon reading on the internet, it appears that failures occur and basically the mesh becomes unattached with straining. I know I shouldn't self diagnose, but I think very possibly could have ruined that part of my repairs. Sigh.... I just don't know if the surgeon will feel it is worth the risk to repair, but this is one reason I must always have that not empty feeling!
Posted 9/15/2009 11:51 PM (GMT 0)
It has been a long time since I have read any of the posts.  It is such a huge help to read others experiences. I had a total colectomy May 27th.  Spent 24 days in the hospital, blood clot in heart, blood infection, malnutrition and esphogitis.  Tough recovery but I am happy to say I feel wonderful.  I returned to work 9 wks after surgery, started 1/2 day for 2 weeks. I came a long way from diapers and a walker. All the abdominal pain in gone.  Instead of going 4 times a month I now go 3-15 times a day.  I have total control of my bowels, no abdominal pain, and I can eat almost everything.  Fresh fruit does not agree with me.  Fatigue is my only compaint, especially the days I go 15 times.  My husband has been wonderful, very understanding.  I have horrible gas but we always get a good laugh.  I have alot of rectal burning, anyone have any good suggestions for that.  I would go through all of this tomorrow, best desicion ever.  I have my life back.
Posted 9/16/2009 12:20 AM (GMT 0)
Jen, don't give up on miralax yet. Let me tell you what I have found with my miralax experiments. LOL HEEHEE Go ahead and take what works...but take 1 dose of miralax every single day. Don't take anymore than that. The miralax seems to build up in my system, so not taking it for 2 or 3 days is too long and then won't work. I know this seems weird, but it really helps me. Then after your body adjusts to 1 dose a day take 2 doses if you don't think it is helping you enough. Taking the miralax like this does not add to my already bloated abdomen. But, if I take 6 or more doses it makes me extremely bloated and nauseaus. So, I try to take 1 to 3 doses everyday.

Jenise, that is so weird about your defecogram. How much barium did you empty? I only emptied a small amount. It is not something I want to go through again either, but, seeing as your test results seem to change monthly, maybe I need to have my test repeated. I know my emptying problem is even more problematic for me now than 15 months ago when I had my defecogram performed.

Hodaya, I am so glad you are doing better. You actually sound happier. I am hoping I can one day laugh about all these poop problems that I have....right now all I can do is hope and pray for a miracle.

Tracy
Posted 9/16/2009 12:03 PM (GMT 0)
Jenise, you must talk to your surgeon and tell him ALL of your concerns and thoughts regarding the differences in dianosis' of all your defograms. i'd be very concerned too if i were you. it makes it very difficult to feel confident of the way of treatment decided when the diagnosis itself is not clear and definite.. also make sure he checks your rectum, maybe whats protruding out ARE hemmies. just make sure of that one. gosh i know how it feels all this uncertainty, that's why you MUST tell your surgeon everything you've been telling us ON HERE, all the thoughts and concerns you brought up here should be thoroughly brought in front of HIM. you probably have at least one more appt to see him before the surgery, right? at least to discuss this last defogram i assume. and if you don't have an appt, make one, you must straighten this out. i hope that when you see him you get all the answers you need. i'll be waiting to hear all about your conclusions, cause all of this mess is too confusing. Lizzie, so glad you had a good time at NYC. hope you manage to take some time to relax before the surgery. this is your big chance now and i believe you're going to do just great! i truly do! i have a lot of faith in that. love you too so much hon! Jen, yes, you WILL do great, you'll feel so much better w/o this colon. conmarjo, i'm so glad to hear you're still doing good and keep getting better, it's very encouraging for us too. if you eat fresh veggies, it can give butt burn, or even cooked tomatoes can do that, anything with a bit more acidity than other foods can do that. like olive oil and other oils, i think it'll be best for us to stay away from olive oil and stick to the others, cuz the olive oil has much more acidity. i know when i'm watching out from those, my butt is a lot more calm lol. Tracy, hope you're holding on. Judy, Janie, Christy, hope you're doing well. blessings to all of you!
Posted 9/16/2009 12:09 PM (GMT 0)
so can anyone answer my question about my incision?
Posted 9/16/2009 1:25 PM (GMT 0)
Hodaya it could be a dragging sensation that you get after surgery - did you have lap? I felt a dragging after but i did have open. my stomach is a bit bumpy at the top of hte incision but i guess its cause of opening me up wide and the skin doesnt go back to where it was before??
Posted 9/16/2009 3:02 PM (GMT 0)

Oh....so I had a few to read back though most of the posts. Its so hard to catch up even when your only gone for a few days.

Jenise....I agree with everyone else that something concrete needs to be determined between all of your results of your defecographies. I had some differences, maily the amount of barium expelled. I was able to get 96% out this last time and 0 % with the second and only about 15-10 % with the first (before TC). I would make an appt to discuss all of these differences before making any decisions. I know your surgery is fast approaching.....I just want them to be sure.

Jen- I am so sorry you are so miserable....I wish I could take that away, but Oct 26 will be here before you know it. I know personally it seems to be a snail crawl when your nervous and thinking and hoping. I am praying for you and hope you can keep eating in order to keep your strength up.

Hodaya- I am so happy for you and I know we talked last night....your encouragement is endless. I just cannot help but think about what can happen with my history, but I am also positive at the same time. Thank you for always being there for all of us!!! Love you.

Judy- Glad you are keeping yourself, busy and loving being back at work, but do remember to find some times of rest for your body!!! I know doing what you love makes you forget, but yo uare still dealing with some ailments and have to be a little careful on not getting so worn out you get sick, etc. Miss you, but glad you are doing so well.

Marisa- I would ask your doctor about the pains...you all tell me to ask and it never hurts to ask. I am glad the bleeding has stopped and you are feeling better. IYou should hear the sounds that come out of my ileo and I know what you mean being next to pts!!!!! Thinking of you and praying for you.

Tracy- I just do not know if you can wait until next summer....that in my opinion is risking your health and putting you in a definately weakened state for surgery. I feel so bad for you and I know thinking and electing for an ileo is hard, but I would have rather had an adjustment period. In my opinion, its never exactly what you think. I was like you, I was thinking I would have a bag over anything....but again, I have had some strange complications with my ileo and it has not been as tolerable as most are for most people. I just wish you would think about moving this up and getting your life back.....I am worried about you.

Karen, Christy & Janie....how are you all and thinking of all of you!!!!

As for me...pretty much status quo.....I am keeping busy trying to avoid my brain. I am having such severe panic attacks, but last night I was able to druh myself to sleep with some anxiety meds. It was wel needed sleep. My resting HR has been in the low 100's and I just cannot seem to calm down. I feel ok....just really emotional. I was at this position before...I had a TC and I failed it...I am just hoping this is truly the end as you can all see it. I am remaining positive and hoping for the best, but protecting myself to a certain degree and realizing what CAN happen. All in all it should go well.....13 days ( They moved me to the 29th). I was up to 108 and now back down to 104 from all of this flu/anxiety, but trying to put a few back on before surgery. Hope you all have a good day. Love you all.

Lizzie

Posted 9/16/2009 4:49 PM (GMT 0)
thanks Karen! yes i do get the dragging feeling, like my lower abd is heavy and pulling down, so it's hard to stand for too long or walk. the minute i stand up i feel my abd is pulling down and feel the need to hold it. so i just saw my internist today, turns out she had a c-section and as we know they have the same bikini line incision. so she told me that this hard area that protruding is actually edema and this is caused when the body is in trauma. esp the site of the cut stays that way for a long time. but she reasured me it goes away with time, it does take time, even up to a yr, but eventually it goes down significantly. she said i can help it go down by massaging it with wheat germ oil and also compressing it with cold towels can help a lot. so only persistance needed and lots of patience. at least now i'm not worried about it too much. Lizzie, your attitude is terrific and i like it, good for you!! you'll be great, i just know it!
Posted 9/16/2009 6:59 PM (GMT 0)
Hi everyone,

Hodaya,

I had the bikini cut also and I know how you feel...plus my flab hangs over the line, if you know what I mean?  I'm not overweight but my abdomen is still puffy...after 6 months.  I lost 10 pounds and have kept it off, which is a good thing, otherwise I'd look pregnant.

I've really slowed down with my bm's.  I feel ok, because I drink my iced coffee drink in the morning and that helps me go, and at night I drink prune juice, and that gets me going, but if I don't do that, I don't think I'd go at all.  I haven't been to biofeedback for 2 weeks; it's such a long drive and I've been working more, but I guess I'll go back.   Usually when I work I only eat a yogurt or something small for lunch, but yesterday was my office mate's birthday, so a few of us went to an Italian buffet and I ate way more than I normally would.  I didn't even go after that until last night after my prune juice.  I want to try and see what happens if i don't drink it, but I start getting uncomfortable, and then I know I have to get up early the next day and go to work, so I'm scared to try.  I don't have anywhere I have to go Sat. morning, so I may try then and see what happens if I don't drink the iced coffee or drink prune juice then.  I could live like this, but I'm just worried that if I have to do this now to have a bm, what happens later?  It's only been 6 months!

At first I thought it was all my pelvic floor, but sometimes like yesterday, I didn't get that heavy rectal feeling, I just didn't feel like anything moved at all!

Opps, gotta get back to work, will write more later!

Posted 9/16/2009 7:31 PM (GMT 0)
Hodaya and anyone else who had the total colectomy by lap, how long is the incision? I have had two c-sections and abdominoplasty with a hernia repair so I have a scar from hip bone to hip bone along the bikini line. I wonder if they will go in at the same line. I hope that the scar tissue along the line won't be a problem. Hmmmmm....you guys got me wondering. I wish this surgery was over so I would stop thinking so much about it. I'm going to make myself crazy!

Jen
Posted 9/16/2009 8:54 PM (GMT 0)
Jen, I too have had an abdominoplasty with a hernia repair.. scar goes from hip bone to hip bone, and surgeon said (at least in my case) he will be below this incision! I think my incision is a little on the high side.. mine was done 19 years ago! Oh, and I do the same aas Tracy, I take the Miralax everyday.

I think I confused everyone hear regarding the defecograms!! They really aren't any different.. only difference is the SIZE of my rectocele! It's bigger, and it's because 1) it got worse (which I think is the case) or 2) the other facility did not have me strain.. therefore, it didn't show the true size. I did address this with the surgeon, and that is why he decided to get another test - even though the other one was just 2 months ago. I didn't empty the barium with either test... so the only real issue is if the surgeon thinks it should be addressed, or if the risk is too great because of the stupid mesh. I did tell him all my fears and concerns, and felt he listened.. so hopefully, this test will tell him which way to go. It only tested the rectum, and not the prolapsed sigmoid colon... that is going for sure.

Janie, I'm glad the coffee is helping, but golly - I'd be frustrated too and worried about he future. I guess there never will be "normal" for any of us.

Lizzie, 13 days.. I think I'd be a nervous wreak too! I am glad you were able to get some sleep. I think I must have the ultimate way of taking my mind off surgery - the cruise! I can't believe I will be on a cruise and 3 days later in the hospital! I do hope that while I am on the cruise, my mind will be off the surgery!

Hodaya, that makes sense as to what your internist said. You body did just go through a lot of trauma, and all the puking didn't help! You SOUND like you're doing wonderful for being at the point you are in recovery!
Posted 9/16/2009 9:35 PM (GMT 0)
Jenise, I hope they go below my current scar line also. Mine is a little high too due to the hernia repair. I am cut hip bone to hip bone with about a two inch line vertical toward the belly button.

I have tried the Miralax in the past with the daily dose regimen and it didn't work. Just simply would not go to the bathroom. I would then blow up and be miserable so I had to take other action. Then I tried the massive dose technique, and that produced the same result but blowing up the day of and still would not go to the bathroom. Over the past 9 years I am afraid I have run the gamet with all sorts of meds. The GI docs even tried me on meds for other illnesses that had the side effect of diaherea. Do you think it caused me to run to the bathroom....heck no...If my colon could speak it would say, "what else ya got, cause it ain't gonna work!" Right now it tells me daily, "didn't I tell you I didn't like food and to quit sending it down here!" LOL

Jen
Posted 9/16/2009 9:45 PM (GMT 0)
Jen. my 2 c-sections were vertical (not bikini) and my scar goes hip to hip, with about 2 " vertical towards my pubic bone. He pulled the skin so much that it raised my public hair line!! LOL.. but still happy with the outcome and glad it was done. I hope your surgery is so successful, and you don't have to work so hard at getting things moving! I do still take the MiraLax, but I don't feel it is as effective as it was when I first started,. I don't bloat - but it does cause pain in the middle of my gut! I also hope my surgery is successful, and I can stop using all the stuff too!
Posted 9/16/2009 9:51 PM (GMT 0)
Jen
I had a total colectomy by lap. My incision is right above my incision from my hysterectomy. It is about 3 inches long. I am amazed how quickly all the incisions healed, my surgeon used derma bond.
I thought I would go crazy waiting to have my surgery. The day before surgery I went nuts cleaning and doing laundry. I even organized my hangers.
Conmarjo
Posted 9/17/2009 2:57 AM (GMT 0)
Janie,
I am experiencing the same thing these last few days. I am not really feeling anything moving. Tonight I took my first dose of Miralax, which was the first thing to make me go since surgery. I am upset about it, because I was going all the time and now nothing! Also, this whole last week, it is like I have swollen up, gained 8lbs. and feel fat and bloated. Maybe it is because I havn't been going at all. Anyway, the Miralax worked. I just went. Before surgery, I had to have it 8 times a day and still wouldn't go for weeks and weeks. It was awful. I would look pregnant all the time.
Lizzie,
Just hang in there, you always have such a good attitude and you have been through so much in such a short time. You will be fine. We are all with you in spirit!
conmarjo,
You really had a terrible time. I can't imagine having a blood clot in the heart! How are you doing now?

Everyone else,
Love you guys and hope you are doing well!!
Christy
Posted 9/17/2009 5:53 AM (GMT 0)
Janie and Christy, it's so discouraging hearing you both need to take something to help you go. i feel sad for you and it's getting me so worried too. i'm so tired of worrying about pooping. Jen, my bikini line incision is 8 cm long and my surgoen said that if i have a c-section or any other abd surgery in the future, they will go in through the same incision, which is a good thing i guess. i asked my internist if after going in few times through the same place over and over makes it look worse after each time and she said not at all, it'll always look the same. ask your surgeon if he intends to use your current incision and let us know what he sais.
Posted 9/17/2009 11:17 AM (GMT 0)
Christy, A few days after surgery I went into atrialfib.  They rushed me up to a cardiac unit and the cardiologist wanted to use the paddles on me to get me back into a normal rythm.  He first did a test to check the back of my heart and that is when they found the clot.  I am on coumadin and will be rechecked next month.  What a scary thing to have happen.  I had so  many things happen to me and I just kept saying all of this is a test!  I now understant the statement "don't sweat the small stuff"

Conmarjo

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