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TOTAL COLECTOMY PART 24

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Posted 7/30/2009 6:59 PM (GMT 0)
I am home... been gone 5 hours, and what a DISAPPOINTMENT this visit was!

My Uro-gyn, who just did my surgery 4 months ago ordered all my tests (colonoscopy, sitzmarker & new defecography) he also referred me to this colorectal surgeon. He told me that he would be discussing my test with this doctor prior to my visit.. and guess what - the new doctor didn't have one report nor any discussion with my uro-gyn! I was pretty upset.. as the test were done in my town (over an hour away) and they didn't have access. My uro-gyn's office is in the SAME building, just 1 floor up.

Anyway - Dr was nice enough.. did look through all my other tests and procedures, and was able to get the new defecography report - but not the sitz marker study.. so basically, we could only address things half way - and until he gets the other reports, he won't know what plan of treatment I need.

On the incomplete info so far - with the sigmoidocele, they will do a resection, removing the sigmoid part of the colon. They will attempt to do it via laparoscopic - but I will have a 6 inch abdominal incision as well for him to work on the colon. (I think I rather have it open - it would just be a much larger incision ?? ) along with that, he will pull the rectum up more and attach it to my back bone (this was already done - but they will pull in up more). Hospital stay - expect around 7 days... and basically that is it so far.

Bad things:

1) they never saw it on the first defecography test - otherwise - everything would have been addressed at one time, one surgery, one recovery. That sucks!
2) now because of my sacral colpopexy repair - which uses a mesh - makes it much more difficult a surgery. They have to be extremely careful around the mesh area of my rectum, or damage can be done - causing me to have to have a Colostomy bag!
3) don't know anything about his plan for my newly diagnose colonic inertia.. maybe just stay on the MiraLax..??

Good thing - I can pick the date I want in October! They won't do the surgery until I am 6 months post op - (end of Sept) but I have a 7 day Cruise in October - so I am going to enjoy that - and have a couple days to clean my house and recoup - and then.. I'll have the surgery in October.

conmarjo, just saw your post - you poor thing! These reports scare me! My Sacral Colpopexy was the hardest surgery I have ever had (I have had 2 C-sections, tummy tuck, breast lift and a few other not so major ones). It literally wipped me out and I was afraid it would take a year for me to recover, but by 6 weeks post op, I really turned the corner. By 9 weeks I felt great.. but we are all different, and some may take 3 months or more to reach that turning the corner.. hang in there!

Hisgal, I asked about him fixing my small leftover rectocele.. he said no, that would have to be fixed vaginally - and again, in my case with my mesh, he wasn't sure if I should ever have it fixed. Basically - I am an old model car and they are fixing some parts, but I'll never be new again.
Posted 7/30/2009 7:35 PM (GMT 0)
tinker, let me get it streight, you've done all the tests already but they can't have the results, so you'll have to do the same tests all over again???? if so, then this is terrible!!!! i can't believe they would be so disorganized and make you go through all the tests all over again.. it sucks!!!

i'm so sorry you went through all these tests and for nothing.
Posted 7/30/2009 8:17 PM (GMT 0)
Hodaya, no.. thank goodness I don't need the test redone! Sorry if it sounded that way from my post. My Uro-Gyn haas ALL the test results and his office is literally STEPS away - and he never gave them to the colorectal surgeon like he was suppose to.. so.. the appointment was disappointing because they couldn't reach my Uro-gyn to get the reports. They sould have them later today or tomorrow - then this new doctor will CALL me to discuss my surgery ( to save me another trip I guess). Just annoying that my uro-gyn didn't follow through on going over the reports with the colorectal surgeon - HE sent me to.
Posted 7/30/2009 8:31 PM (GMT 0)
i see, well that's anoying enough they make you come over twice for this. anyway hopefully they'll eventually be able to come with the best decision for you.
Posted 7/31/2009 1:42 AM (GMT 0)
conmarjo- I cannot believe your experience. I just had the surgery and things went bad for me also, but not that bad. I hate to say it but it makes you feel better when you realize your situation could have been much worse, like yours. I was on TPN in the hospital and hated the pic line. Do you still have it or are you able to eat now? I pray that next week will not be to horrible for you.

Hisgal
Christy
Posted 7/31/2009 1:47 AM (GMT 0)
Tinker - I hope they will not want to fix the rectocele at this moment because I can't stand the idea of going back into surgery. I want to get my energy back. I clean houses to make extra money. Does anyone have any idea how long it will take before I can vacuum without causing any damage to my stomach?

Hisgal
Christy
Posted 7/31/2009 4:13 AM (GMT 0)

Janie-You're right there seems to be a bunch of new/returning people on here and I hope I don't miss anyone; welcome :-) to all of you!

Hodaya - Don't be afraid of the stories that you hear; remember that everyone is different and that my surgery was a HUGE success with NO COMPLICATIONS yeah .

Tinkerbell - So sorry to hear that your dr never met with your surgeon; are you sure you don't live in my town? It sounds like something the drs in my area do, that's why I travel 3 hrs away.  I just feel so bad for you because I know you have waited and expected to here a decision.

Christy- So sorry that you have gone through such a difficult time; my surgery was open & I had drains and an NG for 2 days; I took awhile to heal but I was only in the hospital for 5 days.  I will keep you in my prayers.

Conmarjo - You have been through so much and it will take months for your body to heal and gain strength.  As for the formed bms; I didn't have a formed bm, that one would consider "normal" until about 9 mos after my surgery, I had many bms with tiny pieces of stool but never fully formed until then.  I too have lost just about all of my muscle tone from having 4 kidney surgeries (I had a tube coming out of my back for almost 8 weeks) throughout May & June and also battling the c difficile infection during this time.  We can rebuild our muscles together!  Right now I'm only doing arm pumps/flexes & leg flexes without weights until I get my ureter stent out. I will pray that things go better for you and that you build up your strength...We CAN do this!!!!!!

Lizzie - Praying for GOOD news tomorrow!  Love Ya!!!!!!

Better days for everyone; peace and prayers to you all,

Judy 

Posted 7/31/2009 6:37 AM (GMT 0)
Judy, you are THE BEST!! thanks!!

Conmarjo, what do you mean you lost you muscle tone? which muscles? not your rectum muscles, is it? i hope you feel better soon. praying for you!
Posted 7/31/2009 4:32 PM (GMT 0)
Judy - The thought of a tube coming out of my back for eight weeks is horrible. Did they suture it in? I am having formed Pencil width stools already three weeks after surgery. Last night my back started hurting and I feel like it is because I am constipated, only going once yesterday and a small amount. I have taken two colace everyday for three days and this morning finally took a dulcolax. Do you have any suggestions?

Hodaya - I agree with Judy! Don't let everyone else's experience scare you. I had family and friends telling me not to read all these posts before surgery because it would scare me to death. I am the kind of person that reads it for information so that I will understand if something does happen to me and it makes me feel better to know that I have talked to people that actually understand my situation. I don't let it scare me. I know that everyone is completely different and will have different outcomes. My doctor told me that I had a strike against me going into surgery. I had gotten to where I could hardly eat anything and my body was so weak. Too Weak! Try to keep yourself as strong as possible and you should be fine!

Love ya all!
Hisgal
Posted 7/31/2009 5:13 PM (GMT 0)
Lizzie or ANYONE
I have just contacted the doctor because I am trouble going and have terrible back and chest pain (could be gas). The nurse is contacting the doctor but thinks I need to get to the ER to be checked for a blockage. I have running to the ER. Can anyone that has ever had a blockage please write me back and let me know what your symptoms are. I would have to drive 1 hour to the nearest hosp. and five hours to the surgeon. I dont want to do that. Please let me know if you have had a blockage what you felt like at first.

Hisgal
Christy
Posted 7/31/2009 5:30 PM (GMT 0)
Well.. no news yet from my surgeon. I don't really expect to hear from him today - but was kinda hopeful I would. So.. any tips on questions I should ask? I was so nervous yesterday that I could only think of a few! (how long a hospital stay and expected recovery time). How much different is it if they take part of your colon or the whole thing!? I really wished he had the reports yesterday.. but seems like my doctor isn't the only one who has dropped the ball. Guess that should be a reminder to all of us - to be proactive in our own health! I planned on bring copies with me (just in case) but forgot them when I walked out the door. Lesson learned for me.

I'll admit - I am scared too. This doctor didn't sugar coat it - and said it's a big surgery - and with my mesh - becomes more complicated. Tracey - this will be the same for you when you if they should decide to do surgery. I do feel fortunate that I have a real "mechanical" issue - that shows it needs surgery to correct. I would hate being like this and not having the doctor pin point my problems..

Christy, it really takes a full 6 months or more for your body to totally heal. That's why they won't even consider going back in and removing my colon until I am a full 6 months post op. As far as the vacuuming - wait till your doctor says okay - but I think he'll make you wait 6-8 weeks. No pushing a shopping cart either! This was the rules I was giving post op my last surgery - something to do with the inter-abdominal pressures.. no lifting more then 5-10 lbs either. I followed all the rules because I wanted a good outcome - only rule I had to break is straining at the toilet! I hate how much I have to strain.. and everything I go I picture everything fallen down again!

I'm also concerned because the defecogram report said I had "a moderate amount of prolapse" and a small rectocele.. I thought my prolapse surgery would have corrected this - but I guess my broken down car (pelvis) will never be fully restored to it's former condition. I guess this is why he will do another rectopexy too - to pull things back up into the correct position. I'm hopeful.. that I'll be able to poop normally - but honestly - it's been so long, I really am clueless what normal is!! All I know is that my family members go everyday without help, or straining.

QUESTION.. I was just thinking about my appointment yesterday. We just sat and talked - he didn't have to examine me at all. My mother said that was normal - he just needs the reports because at this point there is nothing he could see or feel.. and the reports are what he needs. Is this the case with all of you? I/m glad - as I sure didn't need another person poking up my rectum!
Posted 7/31/2009 8:34 PM (GMT 0)
Thanks Tinker! I havn't caught up on all of the threads lately because of my surgery, so I don't know what your last surgery was. Are they now wanting to remove your colon or have you already had that done? I am so new to this prolapse and rectocele talk. I was just told that I have a small rectocele. How do they fix those anyway? By the way, the same thing happened to me when I got to the surgeons office, they had none of my reports!

Hisgal
Christy
Posted 7/31/2009 9:07 PM (GMT 0)
Hisgal,

How are you now?  Have you been able to go?  I haven't had any blockages, but I know several here have.  I'm surprised no one has answered yet.  I'm sorry I can't help you.

You had a tc for colon inertia didn't you?  I've found when I feel bound up, if I drink Welch's grape juice or prune juice it gets things moving.  When I feel constipated, it's more my rectum that is painful, not so much my back.

Please let us know how you're doing!  Good luck.

Janie

Posted 7/31/2009 10:59 PM (GMT 0)
I received my referral appointment date for UNC GI Clinic.  I have to wait until October 5th to see someone, and it's not even a doctor but a fellow or resident sad  .  Apparently since it is a teaching hospital I see someone like that then they confer with the doctor.  I don't know but I am afraid I am wasting my time but could be wrong.  Based on the posts I've been reading I think I will gather all my test results and mail it myself or take them with me.  This clinic is almost 3 hours from me.  Based on what happened to you tinkerbell I better take things into my own hands.

Jen

Posted 8/1/2009 1:42 AM (GMT 0)

Christy,

I hope you are doing better; did you go to the ER?  Have you tried miralax?  Following the complition of my c diff med I became slighly constipated due to the spasm meds I took one dose of miralax and haven't had a problem since.  And yes thankfully the tube was sutured in; the first tube was very large and always leaked urine so the bandage had to be changed at least 5-6 times a day as well as my clothing; it was a horrible mess and it was rough on my skin.  Thankfully my new urologist changed the tube and put in a much smaller one but I continued to have terrible irritation from the bandage.

I saw that Tinkerbell told you about post-op things.  I didn't do any household cleaning/vacuuming/mopping for a couple of months, I hired a housecleaner during that time.  People that have a colectomy have an increased risk of getting a hernia post-op so that is why I took every precaution not to get one.  This is actually the first surgery that I followed directions and I feel that is one of the reasons why it has been so successful. So take it easy and don't clean, grocery shop or do just about anything to the point where, yes, you are actually bored; then you know you are letting yourself heal.

Jen, you might want to have your records faxed to your surgeon/dr before you are scheduled to see him and call to make sure that he received them that way you know that they are there before you arrive. Also ask if the resident will be speaking with the dr while you are there seems you have travelled 3 hours or if you can possibly be seen the next day and stay overnight, that's what we do a lot of the time because my surgeon, GI and urologist are all 3 hours away but all within 5 min. of each other so we make all of my appts on the same day or the next day.

Hodaya, By muscle tone, we mean in our arms and legs from being so sick and not doing anything.  And,  I will ALWAYS encourage you to have this surgery as it has been the BEST for me and I so want YOU to feel like I do.  Love you girl!!!!!!

Lizzie- Hoping things went well today!!!!

Have agreat weekend everyone!!!!!!

Judy

Have a great weekend everyone

Posted 8/1/2009 2:29 AM (GMT 0)
Janie and Judy- Yes, I had a total colectomy because of colonic inertia. I have also been diagnosed with pelvic floor dysfunction and a small rectocele. I ate several prunes and finally went! I have gone four times in an about two hours now, so I didn't go to the ER. My back is in severe pain and I don't understand it. If I am not better tomorrow, I will go to MEA which is an aftercare or weekend care center. Maybe I have a severe kidney infection. My husband just went to the store and got me several kinds of juice. I am bored, but too tired to do anything anyway. I never thought you could be to tired physically to read. My arms are so weak. I will take it easy Judy. Thanks for the advice, I will keep reading your post to remind me not to overdo it when I feel like it! I still havn't heard from anyone about a blockage and I do want to know for future reference. I will let you know how I am doing tomorrrow. Judy, the drains were from your kidneys after kidney surgery? It sounds so much worse than what I went through. Before this chat room, I had no idea anyone went through anything like this. It's amazing how much you have been through.
How is Lizzie, I havn't seen anything from her? Has anyone heard from Amanda?

Hisgal,
Christy
Posted 8/1/2009 2:52 AM (GMT 0)
Christy,
I know you're relieved to finally go. I know for me, if I don't go after a meal or two, I feel terrible. I used to be able to go about 4 or 5 days without feeling too horrible, but without the colon, I guess there's no where for the food to go. So far juice has worked for me, but grape juice makes my rear end very sore!  I also have pelvic floor dysfunction and a small rectocele.  Since about 8 weeks after surgery, I've had trouble going off and on; some days I go several times and feel great, other days I get horrible pain in my rectum after eating and can't get anything out unless I use an enema or drink juice.  I'm starting biofeedback treatments on the 12th. 

I would let my Dr. know about my back. I had horrible back pain while I was in the hospital (8 days) and even for a couple weeks after I got home. You're surgery is still pretty new, so it could just be that you over didl something. Judy gave me advice about hiring a housekeeper and I did, too. I did more than I should have, but I tried hard to take it easy for several weeks.

I hope your back feels better and you're able to keep going. Keep us posted!

Janie

Post Edited (Janiepain) : 7/31/2009 8:56:06 PM (GMT-6)

Posted 8/1/2009 7:48 AM (GMT 0)
Hi my lovlies....

So I had a ton catch up onto today.....I cannot keep everything straight.

Christy....what is going on??? Whrn I have had blockages, both with /without ileo I had ectreme bloating and vomiting and nausea. I hope that you are ok....please update us sweetie. Worried about you.

Hodaya- I love you sooooooo much and I cannot believe we are so for you.....we will get there, you will get there.

Judy- what a sweeetheart you are and thanks for al your concern.....feels so good to have even one person thet understand me. My pharmicist I work with said i should be a case study becuase of all my complications and he cannot believe I am standing??? haha. I am a strong italian.lebanese woman!!!

I feel for evwryone on this site...... to all of you, you are my family, my heart, and my soul....! I wish I had all the answers to everyones issues, bit what I reccomend: MORE THAN TWO OPINIONS!!!!! three maybe four.....pay to have it no matter what!

I had my test today, number three defecography ( never been ablr yo get barium out). Because I have only an inch of colon, they did things very differently....so glad I paid for it!. I was  injected with barium.....AND I got RID of nearly ALL OF IT!!!! It is seriously a miracle, an act if GOD!!!! I have never been able to get any barium out and I got all but a tiny bit out.! Can yo ubelieve it? O do not have any results, nor a surgery date, but a little part of me has to try and be optimistic. Its hard, but trying....I do not think I will believe it until I have a date!!!! Just me and the knife!

Miss you all.

Lizzie

 

Posted 8/1/2009 11:36 AM (GMT 0)
Lizzie - GREAT news about your lastest test!! It does sound encouraging and I wish you the very best! We'll all be joyous for you when you get the surgery date!

Christy, my last surgery was a little over four months ago.. I had a hysterectomy, sacral colpopexy and a rectopexy. The sacral colpopexy was to bring my pelvis floor up - including my bladder, rectum and vagina - all which prolapsed. The rectopexy pulled my rectum up and all were attached to my backbone via a mesh. This elimated my bladder prolapse, vaginal prolapse and most of my rectal prolapse - however - my last defecography test did show I shill have a rectal prolapse and a rectocele. I do feel that my rectocele is MUCH better - as I do not have to use my fingers and "splint" all around to empty - now my issue is getting my stool into the rectum - as it gets stuck in the sigmoid colon. My last defecography test revealed a sigmoidocele (missed on first test 6 months ago). So basically - my sigmoid colon is redundant ( too long) and is fallen into my pelvis causing an "outlet obstruction". On top of this - I just had a sitz marker study done and also have colonic inertia - which I never knew - but makes perfect sense as to why I could never go for a week or more without using laxatives of some sort! Prune juice, fiber and most laxitives never worked unless in massive doses. So.... it's not a matter of surgery at this point with the sigmoidocele.. now it's a matter of how much colon they will remove because of the colonic inertia AND sigmoidocele. Because of the mesh used in my previous surgery - it becomes more difficult an operation according to my doctor. I'm scared.. but I am ready to do this. Last - I cannot believe the "no reports" happen to you as well!

Jen, that's 3 people here that mentioned they went and the doctor didn't have the reports. Looking back - I would have obtained a copy and mailed them via certified mail to the doctor myself. That way - I would know that the office obtained them. I am ticked off with my uro-gyn.. he was the one who ordered all the test, referred me to the surgeon and failed to take the reports to his office - literally 1 minute away. I emailed my doctor, and I wish he could have said he was sorry - but he didn't and just passed the buck to his nurse.

There sure is a lot to keep up with here! Hope everyone else is doing well today!
Posted 8/1/2009 2:55 PM (GMT 0)

YAY Lizzie, I knew things would FINALLY go the RIGHT way someday!!!!! It takes a LOT of prayer and findind the right Drs and the determination of not settling but eventually our bodies will come around and things will WORK OUT for the BEST for US!!!!! I am sooooooooo happy for you Lizzie; I can't wait till your surgery date and your P*#*ing your brains out, lol, no not really; I just want you to finally feel better, you so DESERVE it after ALL you've been through!!!!!!!!!!

Christy-Really things aren't that bad now, just continuous spasms but I take meds every 3 hours to help with them. And, I actually had 9 pretty good months following my colectomy when I didn't even have so much  as a sniffle.  Everything would have been great still if it hadn't been for my previous urologist; but I believe that things happen for a reason and through all of this my husband and I have grown extremely close. We had a close bond before but nothing like this so I guess things aren't so bad especially since I know there's light at the end of the tunnel smilewinkgrin .

Now if I can just figure out my kids (20 & 22).  Can anyone really tell what they are thinking about these days?????????  I'm having a hard time thinking that I actually raised them or they just have some voids in their brains that they have forgotten some things they learned growing up...oh, well lots of praying on their part.

Lizzie make sure you have a great weekend celebrating you surely need too:)

Hugs and love to all,

Judy

Posted 8/1/2009 4:57 PM (GMT 0)
Lizzie, I am so happy for you. I am thinking maybe the ileostomy forced the rectal muscle to rest and now it is working. Does your doctor think this is the reason too? I am a little nervous because fighter said her biofeedback worked for 2 months...but, now she is back to the outlet problem again. I wonder why that happened to her?

Tinker, I am still learning, but what I have come up with is this.. get a copy of all medical tests ran and make a file folder with all tests and surgery notes from all surgeries. Then, when you go see a new doctor, he has access to everything that you have had done. This has helped me. I also have never been examined by my new colorectal doctor and I think it is because he has just went by what my tests have shown. It sure is frustrating and time consuming to wait for everything to come together.
Posted 8/1/2009 9:33 PM (GMT 0)
that's such wonderful news Lizzie!!! i can't tell you how happy i am to hear this!!! it does sound promising, if so far you havn't been able to pass this test and now it happened, then there's really a whole new hope for you, love!!

but you're right, we'll only know for sure when we see actual results, so yes, we MUST keep praying and with

G-D's will everything WILL be o.k. it HAS to be. love you so much too, honey!!!!!

Judy, thank you for the explanation about the muscle tone. i guess if i'm able to poop right, then the rest seems minor to me. i'm just so pooped out of trying to poop lol.

Christy, thank you for the encouragement and advice. are you feeling better now? i hope things keep resolving for you, keep us posted.

Jen, i'm so sorry you have to wait so long to be seen by anyone. i know how it is, the long waiting appts suck!

Judy, you're absolutely a blessing for all of us, esp after what you've already been through, and still you're always here to help, advice and encourage us. thank you SO much!!!
and you know, usually i hear about coupls that during difficult times they tend to break apprat cuz they can't take the pressure and don't know how to deal with it, but if you and your husband only grew stronger from this last ordeal, then that only proves what a strong, stable and true relationship you guys have. i hope that when i get married some day, i also have this kind of relationship with my hubby :o)
now what's the deal with your girls again?

Tinker, i never expect my drs to keep the tests results. with every test i do, i'm given the oryginal copy of the report and i'm the one who's suppoed to make sure to keep it in an organized file at home, and each time i go to a new dr, i bring my whole file with me. they can't do it for us.

Janie, Tracy, inquiz, fighter, hope you're all well!

Posted 8/2/2009 11:49 AM (GMT 0)
Hi everyone! I was too sick to even sit up for the rest of the day yesterday and all night. I have refused to go to the ER. We live so far out, I hate to go and there be nothing wrong but gas. Lizzie, I havn't had any naseau or vomiting and my stomach is barely swollen. I really think this is extreme gas. I can't pass it. I am taking gas-x 4 times a day (the max) and I may pass gas 2 or 3 times a day and that is with alot of straining. Do any of you use something different for the gas? I have not really been able to eat much, so I don't know if it is what I am eating causing this. What is the best and easiest on my stomach to eat? I was off of pain meds for days and now am back on them every 4-6 hours. I hate that! If things continue to stay the same, I will go to the doc Mon. morning. Any advice on what to eat to avoid gas and how to pass the gas would be appreciated.

Lizzie- I am so glad your defecoogram went so well. This should mean that you are ready for the reversal, right?

Judy- I agree with Hodoya, you are a blessing to all of us!

Everyone else - you are in my prayers!

Love ya all,
Hisgal
CHristy
Posted 8/2/2009 1:49 PM (GMT 0)
Christy, do you have pelvic floor dysfunction too? Anismus? Because I can't pass gas either, but, I still have my colon. I think with a blockage, you can't pass gas. Have you pooped stool or just brown water?


I know after I had my hysterectomy, I had horrible gas pains. I would lay on my side on the couch and this helped me to expel some of the gas. The gas pain was the worst. I really had to concentrate on passing the gas. And I had push really hard too. when you feel the gas move slightly, then make all efforts to get it out. I know you said you were very weak, but you have to walk, walk, walk. Walking makes the gas move. Walk a few laps around your house every hour or two. It is even more important to walk when you are on pain pills because they cause slow transit.

I hope you get relief soon you poor thing. Tracy
Posted 8/2/2009 2:54 PM (GMT 0)
Tracy,
Thanks alot for the walking info. I was walking so good until I got so sick like this two days ago. I am going to walk as soon as I get done with this post. I do have pelvic floor dysfunction but they have never said anything about the animus. I go back to see the doc this Fri and I am going to ask about that. I have actually passed stool, so I am not too worried about the blockage now.
Thanks for your concern.
Christy
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