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TOTAL COLECTOMY PART 23

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Posted 7/15/2009 2:23 AM (GMT 0)
Hi Jen, I had a total colectomy in April. It was for colonic inertia too. I was so worried about not having control of stools too, but my dr said if that happens then there are medication for diarrhea. I wasn't going to get better if I continued living like I was, surgery was the only thing left. I am so happy I did it. I have always had control when I feel the urge. Sometimes I am lazy and hold it quite a long time. I can't believe I do that because of how I could never get it out before surgery! What probably makes a difference in the outcome is if you have any pelvic floor dysfunction. At least that is what I have been reading on here. I don't have any. Just a small rectocele in the rectum. So if I had your job, I would be ok when feeling the urge and having to go. I hope others will put their 2 cents or more in for you.
Posted 7/15/2009 2:24 AM (GMT 0)
Jen,
We must have been writing at the same time. I was so worried about the same issues you are, but I ddn't have too much trouble, although the first 8 weeks I did go alot....close to 20x a day most days. The biggest problem for me was that it just won't all come out at once, so I have to keep going back. Now I'm only going maybe 3 or 4 times a day, but very very little and because it makes me so uncomforable, at night I drink grape or prune juice and it cleans me out pretty good. My surgery was 4 months ago, but before that, I did exactly what you did...picked a "poop day" and cleaned myself out. What I do now is similar, except I do it most nights, but for now anyway drinking juice moves things along.

I have pelvic floor dysfunction which is why I'm still having problems. I'm going to see my surgeon again on thursday and see what he says. I liked him so much before surgery, but now I'm not really sure. I'm anxious to see how he responds; when I had pain in my abdomen he sent me for a ct scan, which showed a blood clot in my abdomen. He quickly sent me to another doctor, didn't seem to want to admit it could be from surgery (which it probably was, because now it's resolved itself).

I would definitely have surgery. Even with the problems I've had, it's still much much better than not being able to go and having NOTHING help. I'm hopiing to come up with a better way to deal with my pelvic floor issues, but at least juice gets things moving. Nothing worked like that before.

Good luck,

Janie

Post Edited (Janiepain) : 7/14/2009 8:32:53 PM (GMT-6)

Posted 7/15/2009 2:42 AM (GMT 0)
Janie, I'm only almost 3 mos out, but I get sore quite often in my lower left quadrant. I was in the ER Friday night and they said all looked normal for post op after having cat scans. I wish I would have asked what they meant by "normal for post op". Now when I called my surgeon's nurse and told her it was sore and my stools were slowing down and hard to get out she said to get into ER to rule out obstruction. I told her I didn't have pain, just tenderness with movement or bumping it. (my cats jump on mine too!) She said you don't want to wait to be in pain because then it's a different ballgame. Thankfully it was normal. I didn't have the soreness right after surgery, it probably started 3 wks ago. Please tell your surgeon about it.

What kind of pup are you going to get? How exciting! I want to hear about it!
Posted 7/15/2009 2:51 AM (GMT 0)

Coastfishin,

Hi and welcome; you have come to the best place to get info and have found the friendliest people who will always be here for you.  I had a subtotal a year ago on the 17th of this month smilewinkgrin !!!!!!!! It was the best thing that has EVER happened to me.  I did have 20+ bms in the first few weeks but by 6 weeks I was having 8-10 bms and I went back to work full-time.  I work as a first grade teacher so I know how it is to not be able to get to a bathroom and I was very worried but I never had ANY problems.  I never had an accident and always had control of my bowels after my surgery.  Yes you do have the urge to go but you have enough time to get there.  I don't know how much of the colon your surgeon plans on leaving but mine left about 2 inches.

If you have any more questions please feel free to ask; there are many of us who would be more than happy to help you.

Lizzie - I'm praying that you get some help this week from the CC, I'll be thinking of you :-) .  Have a safe trip. ((((hugs))))

Janie - What great news that the clot is gone!!!!!! Try not to read things on the internet; let your internist tell you what things mean, you trust him.  Your in my prayers.

I have 2 prayer requests, one for me because I finished my last dose of c diff meds today so please pray that it doesn't come back; and the other is for a little boy's family.  I am also on the Kidney site and they asked for prayers for this family as this little boy, Connor Cruse has lost his battle with cancer at 8 yrs old.  Connor and his family are truly an amazing family who share his journey. You can find out more about Connor if you google his name. I cried many tears for him today.  Prayers will help this family.

Thank you, peace and prayers to all of you,

Judy

Posted 7/15/2009 4:01 AM (GMT 0)
Judy-

Thanks for your prayers!! means so much. I will be praying for that nast c diff not to come back...its an allto familiar bug to me from being a nurse. I will pray for Conner's family. Neuroblastoma is such a nasty cancer....I was a nurse in pedatric oncology/hematology/Bone Marrow Transplant for four years before I had to emotionally switch to adult chemo administration. I lost one too many little kids under my time there and I feel you pain and will pray for peace and strength for his family. I just lost a pt I cared for for three years right before summer....my Super Bub! and I have a tee-shirt in his honor. He also had neuroblastoma.....I am so sorry and you definately have my prayers.

Welcome Jen!!!! Hope you find all the info you need here.....I had a TC for colonic inertia, but have pelvic floor dysfunction. I have had many complications, but never regret the surgery. I never had bowel control problems...I wish you the best in your decisions.

Lizzie

Posted 7/15/2009 11:50 AM (GMT 0)
Hi Jen, I'm new here too and facing the same issues. Hopefully some of the replies here will with your/our decisions. I feel kinda "lucky" in the fact that my last test showed an - outlet obstruction, it almost makes it easier for me to know I should move forward with a sigmoid resection... but then to add colonic inertia to it as well.. and possibly removing the entire colon is something I am not sure I want to do... it's just plain scary!

Also, if anyone here could help with questions I should ask when I see my new doctor - I'd appreciate it!

Linda, I have already had surgery to correct a very large rectocele (4 months ago) but still have a small one. Did they not fix your at the same time? I had just thought they would address that area again.

Post Edited (tinkerbell2) : 7/15/2009 5:53:14 AM (GMT-6)

Posted 7/15/2009 12:13 PM (GMT 0)
I appreciate all the information you are giving me. It makes me feel better about what is in store for me. I am lucky in the fact that I don't have any pelvic floor dysfunction just never have urge to go unless I take a handful of pills. (which at the rate I am going could end up being a fistful)

I am glad to hear that you can control the urge to get to the bathroom. When I make an inspection at a center I am usually in there for 2-3 hours, and would rather not use the bathroom there. I won't go into details but there are some centers and especially some home daycares that you DO NOT want to use their restroom.

I am so glad I found this site, and I am sure I will have more questions as things progress. Are there any specific questions I should ask my surgeon? I am trying to make a list but know I will forget something or not think about something.

Another thing I am fearful of is something going wrong and having a colostomy.

Thanks Linda, Janie, Judy, Lizzie, and Tinkerbell2. I really appreciate your quick responses and information.
Posted 7/15/2009 1:40 PM (GMT 0)
Tinkerbell, the surgeon decided not to address the rectocele when doing the colectomy because it is small and he said it actually could help in slowing things down should I have diarrhea as a problem. He said my surgery was a long one and didn't want to add time to it at that time. If I needed it to be worked on we could do it later. I'm not sure how it effects me now. Do rectocele's make you feel as though you have poop in your rectum that you can't get out?
Posted 7/15/2009 1:51 PM (GMT 0)
Linda,

Yes, a rectocele makes you feel like you're not completely empty.  Mine was only 1 cm, I think...how large is yours?  I'm seeing my surgeon tomorrow and see what he says about it.  He was initally going to remove it first, but then decided the CI was my biggest problem and said we can always remove it later....it may be later.!!  I also hav pelvic floor dysfunction, so not sure which is the reason I don't always feel empty..or maybe a combination of the two!

Janie

Posted 7/15/2009 3:18 PM (GMT 0)

Jen and Tinkerbell,

My dr told me there was a slight risk of having a temp colostomy but he had only had one with all of his previous surgeries.  He isn't a colorectal surgeon just a general surgeon but has been awarded the National Surgeon of the year so I have an extreme amount of faith in him, plus I told my husband if I woke up with a bag he (the dr) better be running because I was going to chase him down LOL.

Anyway, I've come up with a list of questions for you and I'm sure others will add to the list:

1) will the surgery be open or laparoscopy

2) will you have an NG tube

3) will you have an epidural following surgery for pain control (it was the BEST thing I ever had and it helps to wake up the bowels quicked)

4) how long will the surgery take

5) how long will you be in the hospital

6) how much of your colon will the dr leave

7) is there a possibility of a temperary colostomy

8) what diet restrictions will you have following the surgery

Don't let these questions scare you, when I went in I didn't have any questions for my surgeon because I didn't really know what was going on so I just went in with a blank slate and didn't know that there could be any problems, maybe that was a good thing because I was never nervous about the surgery.

I hope this gives you a good start.

Peace and prayers,

Judy

Posted 7/15/2009 3:44 PM (GMT 0)
Judy, thanks so much for the list of questions!! This will be really helpful.

Linda, yes - my rectocele always made me feel like I didn't empty (which I didn't) and I had to push in my perineum area and around my anus to empty (sorry TMI). I just found out I still have a small one - but it is not like it was when it was large.
Posted 7/15/2009 4:34 PM (GMT 0)
When I had my rectocele, I would have to have multiple bowel movements to be able to empty my rectum. I would go a little, then insert suppositories, either glycerin or the dulcolax suppositories, walk around and around, then I would be able to go a bit more, then I would repeat the procedure until I was empty. It was time consuming, but not as consuming as my procedure is now. Because now I can't push down at all. If I am lucky, I can squirt a little bit of liquid stool out, but it feels like I am pooping out of a tiny coffee straw. My rectum feels very tight. Do any of you feel like this? Friday is my big day! Botox injection...I am praying this helps me, even if it is only a little bit.

Lizzie, I am praying for you too. Your appointment is tomorrow, right? Oh, I hope they do another defecogram and it shows that the muscle is behaving now. That would make my decision, a temporary illestomy, very easy to make. :)

Tinker, you see the surgeon Friday? I hope he has some good news for you too.

I hope everyone else is well...Tracy
Posted 7/15/2009 4:36 PM (GMT 0)
I forgot to add that after my 2nd prolapse surgery, a scaralcolopopexy, that my rectocele was eliminated and I still can't poop. It actually made me worse. My GI thinks it is nerve damage and so do I. Too much trauma I guess.
Posted 7/15/2009 7:21 PM (GMT 0)
 

Checking in. I went to my appointment on the 10th and it was a no go for surgery. My doctor felt like I wasnt to the the point of surgery yet. What it that suppose to mean!

 

I am disappointed and relieved at the same time. I go back to the doctor in October.

 

I will talk more later. I have been really busy with Diabetes Camp this week.

 

I will keep everyone in my prayers.

 

 

Posted 7/15/2009 7:25 PM (GMT 0)
wow, i'm trying to keep up with you all..

welcome Jen,
i have colonic inertia too, and should have this surgery too, but my drs are giving me hard time, at one point they were ready to send me to surgery, but now they're affraid it'll make me worse. i'm hoping they'll decide soon, cause if not... i don't want to even say it.
i wish you the best luck with yours!

Janie and Lizzie, good luck tomorrow!

Janie, it's great news the blood clot is gone :) and yes, trust your internist, he'll help you understand all of the other issues (i didn't understand any of what you said, i know the terms in english as to colonic inertia and the dygestive system, but don't know much about other med issues in english), i hope things work out for you.

Linda, i saw you wrote that sometimes when you feel the urge you hold it, and i wanted to tell you not to do so, i've read on previous parts of this thread that some of the girls said their sugreons told them after the surgery to NEVER hold it when they feel the urge, but to immediately go, cause it can cause problems in the future, as to the functioning of the rectum. in general, it's not recommended even to ppl with normal bowels to hold it, drs always say it's not good, so please try not to do it, o.k? i don't mean to preach you or somth, and i'm sorry if i sound that way, but i just know for a fact that it's really not a good thing and i'm only concerned for you. otherwise, i'm glad you're doing well and hope you keep doing so.

Tracy, i'm praying for you!

as for me, i'm feeling worse lately. well you know i've been saying i'm trying to keep empty as possible in order to feel o.k, and i've been doing that for almost two yrs and was feeling o.k with it. lately tho, i can't do it, i started to lose more weight lately, not under weight at all, i'm 5'4 and i'm 112 lbs, but i was starting to lose more and i just feel SOOOO weak like if i don't eat a real meal, i'll faint. the prob is that after i eat i'm in SOOOOO much pain i can't move. it's a worse pain then i've ever had and it's scary, it feels like my colon is gonna burst, i mean it's like i'm pumped with LOTS of air, like more than i can contain, but it WON'T move!!!!! it just keep going back and forth through the colon but not reaching the rectum and it hurts SO BAD!!!! and it's a scary feeling too.

i just don't know how to handle myself anymore, cause if i don't eat i feel better in the abd, but feel like i'm gonna faint, but if i eat, i'm in torture. i can't do this anymore :'o(

i'm going to see the gastro specialist the psych wants me to see on sunday, i honestly don't know what to excpect, and i'm so scared he's going to say no for surgery.

hope you're all well!
Posted 7/15/2009 7:37 PM (GMT 0)

Hodoya-I didn't feel like you were preaching to me at all so don't worry about that. I appreciate the information because I didn't know about further damage from doing that. Thank you for sharing your knowledge. I feel so bad for you. Your body isn't getting the proper nutrients as you probably already know and that isn't healthy either. But you can't keep all those toxins inside of you too. I pray that you get your surgery very soon. You have done everything you can. Ask the doctors how surgery can make you any worse when you can't hardly live now. I don't know about Isreal, but is the health care good there, they are just being very cautious? Some countries have poor health care so I am not sure about yours. Do you take any kind of a vitamin so you can at least give your body proper vitamins? Easy for me to say this now, but please hang in there. How much worse do they want you to get before surgery? I'm sure you've asked them that already. Praying for you.

Posted 7/15/2009 7:58 PM (GMT 0)
thanks to you too Linda, for your concern and advice. well actually, the medical care in israel is considered one of the most advanced and efficient in the world and with lots of posibilities to offer, we have lots of benefits and a huge variety of great drs.

i know i should probably consult with someone about vitamins. i just hate having to take any pills regulary and having hard time persisting with these things. i'm so silly.

thank you for your prays, it means so much.
Posted 7/15/2009 8:07 PM (GMT 0)
Hodaya you are not silly, it's just overwhelming when you feel like crap. It's one more thing to do with your body and you get sick of it. I had no idea about your health care. I'm happy to hear how good it is.
Posted 7/15/2009 9:30 PM (GMT 0)
Thank Judy for the information. I have an appointment now scheduled for next Thursday to discuss the surgery and the latest sitz marker test. I had another x-ray today and the tech let me look at it. All markers were on the right side of the colon not moving much.

I am sooooo bloated right now and in a lot of pain from not being able to take anything since the middle of last week to use the bathroom. I cannot wait until the x-ray tomorrow afternoon so I can take meds.

Hodaya I feel your pain with whether to eat or not eat. I am 5' 6" and weigh 122 when not blowed up like a toad. If I eat I just back up more and more and feel sicker and sicker. If I don't eat I feel better as far as cramping and bloating but then lightheaded and weak. I am hoping surgery is still on the table when I see the doctor next week.

Judy, I would also probably threaten to chase the doctor down if I wake up with a bag. I am so sick now I am thinking surgery looks appealing even though I am scared to death.

Thanks
Jen
Posted 7/15/2009 11:24 PM (GMT 0)
Judy, thankfully, your doctor sounds more then optimistic regarding no bag, so I am sure you won't need to chase him down!

Hodaya, it's awful you must suffer so! I'll send a prayer your way as well that things will progress with your doctors. What exactly do they say regarding surgery? Sorry if you already said it, but going through all these old posts has my brain in a whirl!

Tracy, my appointment with the surgeon is on the 30th of this month.. 2 more weeks to go. I really am looking forward to hearing what he has to say, and if he agrees with my uro-gyn.

Jen, I just completed the Sitz marker test, and for the first few days I was okay, but by the end I was in awful pain. I rushed home and was able to get a little relief from a suppository and enema. I really am scare too about this surgery.. more so then any other surgery I have had. I lived with issues for so long.. I guess I just never think about how different we are then most people in regards to bathroom habits.

QUESTION.. for those who have had surgery - how much does your diet change afterward? Are you not able to eat regular portion sizes and such? How about sweets? My favorite vacation is taking a Cruise - probably because I love the food (but it does make my symptoms 10 times worse ) I am wondering if I'll still enjoy my cruise vacations!
Posted 7/15/2009 11:29 PM (GMT 0)
Another question about MiraLax.. I have been on it now for about 3 months, but there are days that it seems to really make me bloat and crampy.. at least I think it is the MiraLax.. anyone else?
Posted 7/15/2009 11:59 PM (GMT 0)
Tinkerbell we are very different than others with bathroom habits that's for sure. It is very difficult to explain to people why I need such a drastic surgery. They just look at me like I am crazy. Unless you have lived like we have you just don't understand the pain and how it rules your life. I just pray that things get better after surgery I am so tired of being sick all the time. My husband is very sweet and understanding, but I am sure it makes him crazy for me to be sick 4 to 5 days a week. He is scared for me to have surgery but is very supportive.

As with Tinkerbell I would also be interested in knowing how different your diet has to be. Also do you have a tendancy to lose weight, gain, or no change? Any problems with cardio and weightlifting workouts after recovery?

Thanks
Jen
Posted 7/16/2009 12:24 AM (GMT 0)
Tinkerbell,
I love cruising too--in fact we took a 3 day cruise the week before my surgery because I wasn't sure when I'd be able to go again. I had surgery in March and we were supposed to go on a 7 day cruise in October. I've cancelled, just because I can't eat much at one sitting...and I can't imagine eating like I normally do on a cruise. I'm sure some people don't have problems, I've just had some issues with constipation since surgery....the first 8 weeks I couldn't have gone because everything made me go so often, and now 16 weeks later, I can't eat as much because I get constipated. I'm hoping in another 8 weeks I'll be just right!!!LOL Somtimes I can eat most anything, but only in much smaller portions. Other times I have issues. I think it just takes awhile to get things workiing properly....I certainly don't plan to give us cruising forever!

Tracy,
You sound exactly like me with the suppositories, etc. I used to have to do that all the time when I took laxatives, now I have to do it occasionally when I feel like I'm still full. I see my surgeon tomorrow and I want to see what he says about it. I don't want another surgery, but if the rectocele is what is making it so hard to go, I'll have it! This is sort of gross (but what about this isn't?) but when you wipe yourself, or put cream on your bottom, can you feel a hard lump where the stool is stuck? When I'm empty, it's very soft, but when I can't get it all out, it feels like a hard lump. Sorry.

Linda, I think we're gettng a Havanese. They are adorable, and are the little dogs doing tricks you see in a circus. The little girl we're going to look at tomorow is 7 weeks old, and we won't get her until the 2nd week of August if we decide to take her. We've been "dogless" for 16 months, it was so hard losing our last pup I wasn't ready to do it again, but now I think we are. I'm very excited!

Good luck Lizzie
Hodaya, hang in there,
Everyone else....hope we can all get straightened out one day!!!

Janie
Posted 7/16/2009 1:50 AM (GMT 0)

Tinkerbell & Jen,

As far as the diet goes, I remain on the low residue diet and it be one year since my surgery on FRIDAY; YAY!!!!!!!!!!  If you look back to one of Linda's posts this past week I gave her the website that my GI gave me to follow; if you can't find it let me know & I'll post it again.  I still eat very small portions as I get full very quickly.  As far as sweets go, in the beginning I didn't eat them because things tasted too sickish sweet but that eventually went away and now I can and DO eat a lot of sweets smilewinkgrin .  I have panda paws ice cream EVERY day as well as a few mini reese cups; so you see I definitely have a sweet tooth, and no I haven't gained any weight:) Most people have lost weight from the surgery and didn't gain it back.

You have to wait a long time for your body to heal before you do any strenuous exercise because in the beginning you have a high risk of getting a hernia.

Linda-The pain that you're having might be where your dr attached the small intestine to the rectum.  I continue to have sensitivity in the area where mine attachment is, it is especially sensitive when I have a bm.

Thinking of you Lizzie and Amanda,

(((((Hugs))))),

Judy

Posted 7/16/2009 3:24 AM (GMT 0)

Jen & Tinkerbell

I found the website for the postop diet: www.gastroconsultqc.com/diet/diet_LRDNA.html.  This diet is usually recommended for the first 6 weeks postop then your surgeon tells you it's a trial and error thing to see what your body can handle; my body never could handle the raw fruits and veggies so I remain on this diet but on a good note I never did have any complications so maybe staying on this diet is a good thing.

I hope this helps you,

Judy

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