Total colectomy Part 15

IRISH_MOM - I too am thankful you found this thread.  There are so many wonderful people here, not to mention, WE'RE NOT ALONE in this!!!!  Sorry to hear you've been suffering and not feeling well.  Has your doctor recommended a total colectomy to you?

ADVISESEEKER - I'm with Jill regarding how harmful it is to be carrying around all these toxins in our colon.  My first visit back to my primary (a new one) post-op was interesting to say the least.  She was unaware of the total colectomy procedure and was totally shocked when I told her that I lived 43 years being constipated.  The first thing she said was she couldn't imagine all those years AND all the toxins that must have been playing havoc on my body AND that she's surprised it didn't cause cancer or something else.  I wouldn't go for a month and then I had to take drastic measures just to remove the stool from my body.

I totally understand your fear regarding the surgery, it wouldn't be normal NOT to have these fears and worries!!  I really didn't have the support of my husband going into this and I've been with him for 27 years, so he knew what type of life I've lived.  Even post-op didn't seem to click with him.  My 73 year old dad took care of me while hubby went deer hunting for a week, then when he returned, life for him resumed as normal.  I guess this is why I devote a lot of time here encouraging and supporting those going thru this and to let them know they're NOT alone!!!

I had to do what was best for me, regardless of what anyone else had to say.  For me this surgery was life changing - I NEVER knew what it was like to poop like a normal person.  I welcome every bm I have, regardless if it's 10 times a day or two times a day.  All the post-op healing process was worth everything to me and I would do it again without hesitation.  Sure, the pain isn't a pleasure or the discomforts either, but it sure beats all those years of pain and discomforts of constipation and carrying around all those toxins.

I hope I made sense and forgive me if there's any typos LOL!!!      

Thanks for the reply. I'm actually feeling better today and went to work. I'm getting ready to have surgery on the 25th (breast cancer related), so I need to be ready to go. I should probably clarify so folks here don't think I have breast cancer again. I had reconstruction done and one of my implants is leaking, so they need to be replaced. It was originally going to be done in February, but I ended up with a femoral hernia that was emergency surgery so I had to reschedule.

My GP was thinking that a subtotal colectomy would be the way to go, but the GI says it will need to be a total. As long as I can go without cramming all these laxatives into my system I'll be happy!

I'm with your GI - the TOTAL would be better than the SUBTOTAL.  From other posts that I've read, those who initially had a subtotal ended up going back in for the total.  I don't know why this is, so I'm sorry I can't be of more help.  Maybe there's someone still posting here that started with a subtotal and ended up months or years later having to have the total.

SHELLYPOO - I'm doing some guessing here, but didn't you say in a past post that the surgeon left "some" of your large intestine?  When they removed my large intestine, they took it ALL and reconnected the small intestine to my rectum.  I too wondered and researched what the difference was between a subtotal and a total and that's the only thing I came up with.  Maybe I'm wrong and someone here can clarify this.

I too had trouble sleeping post-op.  In fact, I still haven't gotten back on my old sleeping routine.  One of my doctors said it could easily be from being under anesthesia for as long as I was (8 1/2 hours) - that it can disrupt our pattern (I know it sure has for me).  My surgery was on 11-09-06.

Sounds as though you're tolerating food pretty good - that's a plus.  I pretty much stayed away from red meat, but was able to handle pork or chicken in small portions pretty good.  I think it might be OK to incorporate small amounts of veggies in your diet - things that don't create gas.  By adding it in small portions to see how you're body reacts is the best route in my opinion.

ADVISESEEKER - I'm glad your meeting with the surgeon went well and that he's giving you a few days to think about things.  I too had a very large and loopy colon and my three to four hours surgery ended up being eight and a half hours.

I think with any surgery started laparoscopic they tell us it can turn into an open procedure.  Having the procedure done laparoscopic is shorter healing and recovery time vs the open procedure.  My surgery was laparoscopic thank God. 

There is risk with any surgery, no matter how big or small.  It is only human to worry about some of the issues you're worrying about.  Beleive me when I say we all had fears going into this.  Sometimes our minds get carried away and cause us more stress that we really should be having.  Stay focused and possitive is my best advise.  This will be an opportunity to regain your life - that in itself is what confirmed my decision to have the surgery, as well as, it calmed a lot of my fears.

I too had a very large rectocele and when I confronted the surgeon on removing it - he told me that it would take care of itself and he wouldn't have to do additional surgery for it.  The rectocele is caused from all that pushing and bearing down we do and once your body is no longer doing all the pushing and bearing down, the rectocele gets smaller and even goes away and it ends up not being a problem - that was my case anyway.

I too am thankful that you found this forum - I felt the very same way when I found it!!  Without the helpfulness and support of so many, not to mention calming my fears, I don't know what or where I would be right now.  I never knew there was a surgery that could give me a life I never had.  Thru this thread I found hope!!

I can only speak for myself when I say that I have NO regrets having this surgery.  Like I've repeatedly said - I would do it again in a heartbeat.

Please let us know when you make a firm decision to the surgeon on having this surgery done OK?

I hope I was able to addressed and help with any concern anyone is having.  Forgive me for any typos - My mind gets ahead of my hands a lot of the time LOL!!!

You are so correct when you say we are all different and handle things differently, however, the end result seems to be the SAME - "LIVING"!!!!

SHELLYPOO - Michelle, I'm sorry for getting you confused with someone else.  I think you're correct when you say it must be how the doctor words "total or sub-total"!!

It is so AWESOME that you're a week and a half post-op and not feeling a lot of pain AND you got a good nights sleep !!!  This is another example of being different, yet the outcome is the SAME - "LIVING"!!!!

PHYLLISB - Phyllis, THANK you too for your post!!  This thread is such a God send and blessing to each of us - NO DOUBT about IT!!!  I must agree that the first few months for me was like being HIT BY A TRUCK, however, what we gained in those few short months was worth EVERYTHING!!!

I'm sorry, but I cannot help you with your questions regarding hypertension and water pills.  However, I'm most certain that SOMEONE here can address this for you (that's why this place is such a God send)!!!!

I have had plenty of slow downs as I'm sure others here have too.  Try drinking some apple juice or grape juice - also, surger free chocolate (or hard candies in case you don't like chocolate) - even eating a few prunes (Sunsweet makes these Cherry Essence flavored prunes that are really good).  I received these tips from a dear friend whose been thru this and I've found her advise invaluable - she's truly been my guardian angel!!!!

ADVISESEEKER - You're more than welcome!!  I'm happy I could help.  Also, thank for clarifying sub-total vs total - like you said, it must be in the working of the surgeon.  Please keep us posted as to when surgery is scheduled OK?

Hope EVERYONE has a nice evening!!!

Hi Michelle,

For me, post op was watery and then became more formed as my small intestine started to function more like the large.  Also, as time goes by you will begin to go less often.

Glad to hear that you are doing better

I want to thank all of you because if it weren't for you I probably wouldn't have had the surgery nor would I have known what to expect.  ~HUGS~ to all.

Right now I'm just anxious to get this incsion healed properly and to get back exercising!

Today is a yucky day because I took my Avonex shot last night and it had been 17 days...it really knocked me down.

Thanks again all.....you're the best!

Ok here's an update. I can't believe what it feels like to feel normal again!!!!!! I got the operative report from my doctor and he said my colon was damaged. It was adhesioned all up to the inner part of my stomach wall. So I know that my stomach surgery is what caused this problem for me. The surgeon I had that did that surgery is part of a group and the whole group really beat around the bush to what my problem was. One nurse practioner actually said I didn't have a problem and sould take antidepressants. I really think it's a business thing as to how they handle patients. If they told me there was a problem caused by the surgery, then I could sue...so they say it's in my head. I'm not at all the sue type, but I really feel I got swindled by my local docs into not getting good care....take this laxitive take that one etc. I just feel horrible that I know others are going through this still.

I'm going a couple times a day and it's some what formed. I do make noises and the smell is not good. That's my worst complaint. My inscision is leaking and might open up, but that's not a big problem. I had horrible gas pains for about a week after surgery and those are gone. I'm 2 weeks out and feel better than I thought I'd feel after 6 weeks out. I do recline most of the time, but I make dinner and do some light housework. biggest problem is that it hurts to bend down and pick up stuff on the floor...so house still is cluttery looking here and there. I spoke with a guy friend I met online who also had this done but the doctor only took out 1 1/2 feet of colon and he still has the problem. I'm so sad for him. I feel amazing....it was a tough first week....but I'm soooo happy. I eat anything too. I never had any problem with food except when I had a little lettuce a few days after surgery..that was a little gassy and went through fast. I have about 8" of large intestine left.

I have been taking two pain meds that the doc gave me, but I'm sure I can start just using over the counter. I just feel a little sore before bed and after waking up. I am sweating a ton at night...guessing that's from excess fluid. I weighed 205 going into surgery. I weighed 215 while in the hospital. Doctor said colon weighed 10-15lbs. I'm 2 weeks out and weigh 200lbs. My coffee obsession isn't there right now and I'm not overly hungery like I was. hoping those two things don't come back.

Any advice on using public bathrooms?

Stephanie

Irish-Mom = I feel for you - the colonoscopy is sure NO fun.  When I had mine, I did all that prepping and my entire colon was still full of stool !!

Jillibean = Jill, thanks for sharing in detail.  Your post is very encouraging.  I've been where you are regarding losing "material" things.  I couldn't agree with you more that we have to be "thankful" to God for our losses - it only brings us closer to Him and to the realization of what is really important!!

Thanks for sharing your e-mail too!!

Phyllis = Thanks for the "public restroom" etiquette LOL!!  I absolutely HATE using a public restroom and avoid them at ALL costs.  I know that sounds stupid, but I just cannot get over that HATE.  I will go without eating when I'm out and about just to avoid the public restroom!!

I know this sounds SO stupid but since surgery the smell of my BM's are AWFUL!!  I just can't see puting "strangers" thru it LOL!!

Tyblossom = Stephanie, so nice to hear of your update and that things are going well for you.  Yes, you sure have been thru it with all the other stuff on top of this surgery.  I don't know how you did it!!!  Isn't it WONDERFUL to feel "normal" and "good" after feeling so bad for so long?  Funny you mentioned your coffee obsession - it was a good three months post-op that I was able to drink even one full cup - I just LOVE my coffee!!  However, my obsession returned - as did my appetite !!  I'm 6 plus months post-op and I've regained eight of the 25/30 pounds lost after surgery.  I'm hoping that I DON'T regain any or much more!!

Resa and Michelle = It's so nice to hear your optimism - This board has been such a lifesaver for so many, including myself - I'm so thanful to each and every one of you!!

I do have a question - Is anyone beginning to have a lot of gas build up?  For the past three weeks or a month now, my gas has gone from nothing to like it was before surgery?  It is quite discomforting to say the least!!!  The smell is the worst I've ever smelled   - I'm at a loss as to what to do to stop it from even forming again.  My diet hasn't changed - I guess it's my small intestine finally taking over the job of the long gone colon.  Does anyone have ANY ideas?

I hope ALL have a good weekend and God bless!!!!

My surgeon warned me not to drink soda for quite a while or to completely stop, she said it can cause some painful gas.  Also, not eating regularly can cause gas.

I was doing well with my stools already after 2 weeks getting soft and some-what formed but yest. my DH wanted fried chicken.  I'm not a fan of it but went along with him.  I ate 1 breast, no skin and a biscuit and all I've had is the watery stuff again and plenty of it!  I think it was too greasy!

I go back to the surgeon today, hopefully she will tell me something good about this incision.  I also need the time line for driving, exercise, etc....

All of you take care!