Total colectomy part 17

Amey

Glad to hear you are doing well.  Good luck on teaching your first class, I'm sure you will

do fine.  When yu leaked, did it burn?  I remember when my dad leaked which was alot

it hurt alot and was very raw because acid that comes from it.

As for me I've tried not to eat wheat and other things. This weekend was not a very

good one.  I felt like I could not go, I so much pain and cramping. Finally last night

I was able to go, but today it's all water.  I wish my bowels would make up there mind

and be normal (will at least how they are suppose to be after the surgery).

Again good luck on your class and let me know how you did.

April

Amey,

It's not your fault for getting the wrong supplies, it's the stupid nurse. Hopefully

when your order comes in it will be correct and wont have anymore problems.

I'll keep my fingers crossed.  Let me know if you got the correct supplies.

April

Cecilia...Are you SERIOUS? I could have run to the medical supply store? Oh my, I cann't believe none of the nurses told me that when they knew my skin was bleeding from wearing the Convetec supplies (which was all I had on hand). I pass a medical supply store at least three times a week. THANK YOU for the information. Do you know if they take insurance there or do I need to pay cash if I go? My insurance covers my supplies when I order them by mail.

Thanks again!

Amey

I hope your exercise class went well.  I hope you can get your medical supplies situation straightened out.

I don't see the gyno until October 22.  I don't want to have to wait that long to possibly get an answer that fixing the rectocele isn't going to help my bowels.  Like I mentioned before, I have given myself enemas for the past 8 years.  I think sticking the enema in my rectum and having the force of the water go in is just making my rectocele worse.  It isn't so much when the bowel comes out...as I don't have to strain to do so with enemas.

Do you think I should just schedule an appt with a surgeon?  That is my next question.  I have talked to 3 surgeons, and one said he would do it.  Of all 3, he is the nicest, most caring surgeon of them all.  He isn't at a reknown hospital, just my local hospital, but I feel comfortable with him.  He was honest with me and said if my CI is taking up my life, then a TC is something he recommends.  He has not performed many on patients as young as myself, but he has performed a lot of them on older patients.  Should I go with this surgeon?

Also, I would like to have more children in the future.  Do you think the TC would affect that? 

Lindsay, I failed my defocography test.  I couldn't push out and didn't empty any of the contrast myself.  My doctor gave me 3 enemas afterwards to try and help me.  3 days later I still had contrast in me and couldn't do one of the other tests needed.  I had sphincter dysfunction also, and had problems closing myself up when I tried to have a bowel movement.  I had 2 botox injections in my sphincter so that my bowel movements would pass thru after surgery.

Good news.  My total colectomy was a success and I feel much better now.  It was all worth it.

Lori

It should not, but I cannot speak from experience.  I am taking some hormones now, not for bc, and they seem to be effective.  I'm sure others will give you a response that will better answer your questions.

Hi Everyone....I just wanted to let you know that my fitness class was AWESOME! I felt so strong and was not tired or winded at all. In fact, I felt like I could teach another class I had so much energy. When I got home, I went for a short run. This is crazy! I have not felt this great in so long. It feels like a dream! It is hard for me to imagine that I could feel this good in a year or two. I have always felt better after my last three surgeries, but then, slowly my health starts to deteriorate again. But, I have never felt this GOOD! I constantly thank God for this grace and generousity and ask him to please continue to bless me with health. I know if I stay close to Him, he will keep His Spirit close to me!

Thanks April! I was excited about teaching again that the energy was coming out my ears! When I got home, I ran a mile and I still had so much energy (too bad my husband was at work, wink wink). So, I decided to mow and edge my yard and do some gardening. Finally, after doing that I felt like I could take a rest. I have never felt like this before! This is amazing!

How are you feeling April? Are you still burning and having pains? Have you ever considered getting a bag or has your Dr ever said anything to you about giving you one?

AMEY - Congrats on EVERYTHING!!!  It amazes me how sick you were just a very shot time ago, not knowing what was going to happen with your health and now you're doing AWESOME - You're an inspiration indeed!!!  I'm so happy for you.

MOM2SOPHIA - I can only give you my insight regarding the rectocele, CI, and TC but I can't tell you what is best for you.  Right now it seems as though you depend on enemas in order to have a bm, however, your transit study test confirmed CI, is that correct?  Did you have an anal manomatry test and what was the results if so?  I'm sorry if you've already disclosed this info - my memory isn't the best LOL.

For me personally, I had a very large rectocele, which was discovered during the defagram and I wasn't able to move the barium balloon out of my rectum, however, my anal manomatry test showed good nerve and muscle results.  I did had a 7 day transit test that showed 22 of 24 rings still in the colon (almost same spot) which confirmed CI. 

I think I stated that when I had my initial consultation with the colorectal surgeon I questioned him about surgery on the rectocele and he told me that having the TC would take care of the rectocele, as bearing down would no longer happen.  I know you stated that you think the rectocele is caused by the enemas.  I'm not too sure about that.  I was told that the rectocele is a pouch that forms between the vagina and rectum when excessive pressure and pushing is done - the stool just moves forward into the pouch, therefore, unable to come out of the rectum unless when you do the enemas the pressure of everything coming out is causing it.

I can tell you that if you have CI, fixing the rectocele will not help with the constipation.  In my opinion, the rectocele will only redevelop.  There comes a time when you have to make a decision - ask yourself if you want to live the rest of your life giving yourself enemas in order to have any form of relieve - if nothing else works in order for you to have a bm.

I came to that cross in the road and I could no longer live with the pain, not to mention, the toxins that consumed my body.  I will tell you that I had the best colorectal surgeon in my area, however, my surgery wasn't at a top notch hospital.  I did research on my surgeon and also asked questions, his success rate, etc. - This is the most important thing in my opinion. 

This is a BIG surgery and there's nothing easy about it in anyway!!!  Everyone is different in the way their body recovers.  For me personally, I felt like I was ran over by a truck, backed over, and ran over again!!  It took me a good 16 weeks to feel 80% - Would I do it over again?  YES - in a heartbeat.  There are risks with any surgery and we must decide if it's worth it to have this surgery and I will tell you that for me, it was worth every risk!!!  There are others here that recovered much faster with little problems and there are those who had some set backs - everyone is different!!  There is no surgar coating this surgery - it's tuff - and honesty in my opinion is the way to go. 

Having this surgery gave me a life I never knew existed (I suffered being constipated all the way back to when I was a toddler, 43 years).  I have NO regrets!!  Each day I got better, slowly, but I did get better!! 

I don't mean to scare you - just want to be honest - I'm so blessed and thankful for EVERYTHING I had to endure to be where I am today.  I'm almost 11 months post-op!!

I hope everyone else is doing good and recovering well!!  

Linsday,

I drank 2 bottles of citrate everyday for several years (along with many other laxatives and 15 suppositories every night). This is very depleating and causes dehyration and electrolyte imbalance. You have to be careful. Like you, I was working on taking classes and trying to get another degree under my belt. So, I postponed my TC..what I found was that I was having a hard time concentrating in class because I was so malnurished. Finally, I was rushed to the ER where I had an emergency surgery and I had to drop my classes. The next semester, I signed up for more classes and I had the hardest time keeping my GPA at a 4.0 b/c I was so sick. Finally, I have given up on my schooling dream and have decided I must put my health first. I feel better now and was thinking about taking more classes this coming Spring; however, I am 6 weeks out of surgery and I do not want to create more stress on my body. I am glad you have decided to call your surgeon...don't worry about the house your building or the schooling you want, those things will come together in time. For now, you need to get healthy for your daughter and for yourself. I wish you all the best!

LINDSAY - I must say I agree with Amey when it comes to your health - it should be your #1 priority right now.  The only thing other than this would be needing someone to help you for a few weeks post-op with the baby.

You mentioned that you were unable to push the balloon out on the manomatry test - I'm almost sure I was able to, as they said my nerves and muscles were pretty good - I was just unable to push out the barium balloon during the defagram.  I never did have a small bowel manomatry test - I think that's the only test I didn't have.  However, I'm sure the surgeon would be the one ordering this test.  I didn't have an enterocele, only the rectocele.  You more than likely developed this during delivery and this is probably the reason you're having painful intercourse. 

It is very evident that you can't go on living like this - it will never get better over time either. This is where you come to that fork in the road, to make a decision, which road you want to take.  I don't think you can physically handle the torture you're putting your body thru anymore.  I also don't think being 90lbs will make a difference, but then again, I can't remember the last time I was 90lbs - maybe elementary school. 

My heart goes out to you and I know all too well that feeling of "I can't go on like this anymore" - I only wish this surgery would have been possible a long time ago.  You're young and will probably make a quicker come back.  Regarding my statement on the "success rate" of the surgeon - I wasn't thinking in terms of the outcome being a bag, rather how many people were pleased with having the surgery - a "no regrets" kind of thing.  However, Amey was placed in the position of having to have a bag and I'm sure she will tell you, along with reading her recent posts, she has a life now that she hasn't had for many, many years.

Some of the questions I would address to the surgeon:  Will he be doing a small bowel manomatry test, his take on the rectocele and enterocele and if surgery will fix these issues (I know it will for the rectocele), will he do surgery laparoscopic or open, will being thin be an issue, what you can expect immediately post-op and/or recovery time, and what else he thinks you should know about this surgery.  I was told that it can take up to a year for your small intestine to "know" it is your new way of transit.  By this I don't mean it will take a year to recover, rather, over time your bm's usually slow down from the rate immediately post-op.  I'm down from 5 to 8 per day to 1 or 2 a day, sometimes just once a day.  Each person is different although the surgery in most cases are the same.  It is soley an individual thing, from the beginning all the way thru recovery.  If you've gone back thru past "PARTS" on this thread and read you will know what I'm talking about.

I'm sure there are others who can recommend "more" questions to ask the surgeon and those who can offer their individual experience.  I'm here to support and encourge any decision anyone makes and will NEVER grow tired of saying "I would do it all over again in a heartbeat" HANDS DOWN!!!

I wish you all the best and I hope you're able to get in to see the surgeon very soon.

April, did you have a total colectomy?  If you did, and you get worried about not having a bowel movement, eat a piece of sugar-free chocolate.  They come in little round pieces and have a laxative effect.  They taste wonderful, too..

Hi Lori,

I did lose weight at first, but I found it and then some. I have a goofy story though. I was really over weight as a kid, then had one of the first weight loss surgeries and I ended up having problems with it and having it reversed. That's when I started having colon problems. I had a ring like the lap band, but mine didn't open and close like they do now and I had scar tissue built up and I was getting sick all the time. I think my colon got lazy because maybe food was more processed when I had the ring in and once it was removed my colon had to deal with a more dense food. If that makes sense. Either that or adhesions from the surgeries caused it to be sluggish. Anyway, I'm probably gaining weight in part to I had the ring removed 3 years ago...so not really related to colon probably, but just over eating. I can't seem to stop in the evening after dinner. I just don't get it though...last night I snacked on a half bag of carrots and still gained.

Interesting about you with the iron too. Me too and my hair has been falling out big time. Doctor said it was the stress of the surgery on me. I'm anemic anyway and even taking iron like you and still low.

I haven't read back to the posts, so not sure when you had your surgery....but congrats on the weight loss and the going. I need to take Reglan to not have the bloated feeling. I'm just now about two weeks out on starting my walking again. Walking 2 miles a day. That I'm sure is adding to my recent weight gain of building back up muscle that I lost in the last 3 years of being sick.