Total Colectomy Part 11

Hi,
KAP - P-thal was the name the doctor wrote on my paperwork. The nurse called me this morning to schedule and the test is actually called a Cardiac Profusion Test. I'm scheduled for 8/4/06 and it takes 4 hours to complete.

The surgeon at my HMO wants to do the manometry. I called him this afternoon and told him that the surgeon I saw yesterday does not do them. He said my HMO does not do them at the facility either so he is referring me to an outside facility. When he checked me last week he did the finger in rectum test. He had me squeeze, push, tighten, etc. and he said muscle tone felt fine, but that he wanted the manometry to be sure the butt muscles are in working order. I figure between the two surgeons I should get all the tests necessary. Not sure which surgeon I actually want to perform the surgery. One is a general surgeon with colon/rectal experience and the other is a colon/rectal specialist.

I just want to be scheduled and have it over with. Each time I meet with the surgeons they are always sure to let me know of all the risks involved. It might not work, you might go 20-30 times a day, you might end up with a bag, you are more likely to get an infection due to the area of the surgery, and on and on with the might happens. They are making me nerveous and all I want to do is POOP.

I have not been to Christopher Lahr. I live in Northern California.

Amey - thanks for the info on biofeedback. The only time I feel the urge to go is when the stool is in the rectum area so apparently nerves still work. The surgeon said my transit time is "miserably" slow.

Everyone take care and heal.

Resa,

 

I usually do not share my story with anyone but since you are in a position to benefit here is goes and I hope my experience helps you decide which surgeon to use....

In 2001 I had a Total Colectomy which left me very ill.  After the surgery, my surgeon said I was not being patient with the healing process and that I was doing something wrong!  He sent me to a GI specialist who worked with me for 6 months because I COULD NOT move my bowels and I was retaining water.  The GI Specialist later sent me to urologist to check my kidneys and gallbladder. After months of testing, I was sent to GYN to check my reproductive system.  Everything was fine.  I was then referred to another GI Specialist who said I was mental and I needed to see a psychologist.  To make a five year story short...I was shuffled from one Dr to another until I finally met Dr. Marcet who actually LISTENED TO ME!  He placed a scope in my rectum to see the site where the colectomy took place and discovered a major problem - when the first surgeon connected my small intestines to my rectum he did not leave me a much of a whole for food to pass through.  Thus, when food would move through my small it would get blocked at my rectum b/c he left me a whole that was only 2mm wide.  I underwent another surgery 3 weeks ago to recreate a whole btwn my rectum and my small intestine.  I am now doing great. 

Ok, so why am I sharing this???? B/C It is VERY important to get testimonials from other patients before choosing a surgeon.  My first surgeon, Dr. Rout in Gainesville, FL, was highly recommended as a Colon Surgeon and he made a huge mistake and refused to help me afterward!

Yesterday was the first day in over 5 years that I was able to eat a 3 course meal with my children and my husband.  My experience was a nightmare..no birthday dinners or Christmas dinners...no family dinners or breakfast with my children. I could only have liquids for 5 years and 1 week!

 

Please call the AMA to research if either of your surgeons has ever had a complaint, ask for testimonials and do as much research as you can.

 

Good Luck to you..I hope your road gets better.

 

Amey

 

 

Amey, I posted about the grape juice.... apple juice also does the trick! Glad to hear the prune juice worked too!! Resa, I have spoken to Dr. Lahr over the phone and he is VERY knowlegeable in this field. A very nice man. Having this surgery was by far the very best thing i have ever done. It has given me my life back!! Hang in there! And I second what Emma said, go with the specialist by all means!!!!! Hang in there!

Hi Everyone....

Amey, thanks for the info on biofeedback...I thing that the majority of people with our condition, tighten up the muscles because we are so used to straining so hard...If you learn any more tricks, please pass them on...

I jst e-mailed my surgeon..it is 5 weeks since surgery and I am going 12-15x a day and my tushie is getting pretty sore.  I want to know what I can do to slow the number of times down without getting plugged up...

I can not believe how soft my abdomen is...I lost 20 lbs since surgery..but can certainly loss another 40+..my appetite is not back yet and I just need to quit being a couch potato and start moving...

Hope every one is doing well....even with the sore bottom I am so glad I had the surgery...

Take care

Phyllis

Hi

The Surgeon had me do a c. diff toxin test of the stool before he has me take immodium...from what I read, that the abnormal bacteria can present as far out as 8 weeks post op..I was on cipro and flagyl IV's for 3-4 days post surgery...I hope it isn't that....

Amey, I will ask my GI guy about the lidocaine cream..thanks for the info

Phyllis

Excuse my ignorance, but what exactly is a reversal and is it common?

Thanks

Amey

Oh Cathy That sounds awful and yet it is also amazing that something so complex can be done. Congratulations on successful healing.
Thank you for answering my question.

Phyllis,
Have you tried eating foods that change the consistancy of your bowels - wheat and rice or any starch? Are you still eating soft foods or have you gone to a normal diet? Have you lost any weight because you go to the bathroom so often? Is your bottom still irritated?

Oh Phyllis I can only sympathize with your pain. I have 1 hemorriod that gets quite sore when I have too many BMs. In the past, I have tried applying bum medicine to numb my bottom before having a BM. But too much medicine can irriate as well. Another thing I did was as soon as I felt the urge to go, I turned the ### water in my bathtub. This way, as soon as I got off the toilet, I could hop into a shallow ### bath. That helped alot. Have you talked to your Dr about getting you some Lidocaine?

Thanks for asking about my recovery. I am 4 weeks post-op. I feel well. I just have to watch what I eat. I have the opposite problem. I get constipated and bloated easily. I can eat many foods but I have to eat and drink lots and lots of prune juice. But I cannot complain!! I was so constipated before the surgery. I had to take over 7 different types of prescription and over-the-counter laxative products to have a BM. I could only eat one small meal every day and I would vomit when every I ate a normal size meal. I can handle a bloated tummy and moderate diet!

I seriously hope that your BMs slow down. I am sure your bottom is so raw and it could use a break. Please keep me posted on your recovery!
Take care!!!

It's good to see that everyone is still around and doing well. It's been a couple months since I've posted. Initially that was because I was doing so well, but then I ran into a series of unfortunate events that I still have a little trouble believing.

After having my total colectomy 12/27/05 by the most wonderful colorectal surgeon in the world, I was just really getting back to normal (without the pain that is!) when on May 22, I had a very simple fall from one of my therapy horses and landed on my back. We all had a good laugh, I got back up, and went back to riding. The next morning however, I started having a really strange severe pain in my lower abdomen. To make a long story short, the next day I was having emergency surgery for a perforated small bowel. The trauma surgeon in my home town opened me right back up along the 14 inch scar that had just healed. She wasn't quite as...wonderful as my colorectal surgeon.

Well, things haven't gone as nicely this time around. My bowels haven't rebounded like before and I'm still having serious abdominal pain all over the place. And I have this severe pain area to the left of my navel (what's left of it anyway) in a straight line up and down that's about 3 inches long. It burns and feels like something tearing, sometimes worse and sometimes not so worse. I was afraid it was a hernia, but I had a CT and nothing showed up. The doc said it's likely a muscle wall defect (tear) that will need to heal on its own. Seems like it's been long enough to me...

So I haven't been back on here because I honestly am really tired of listening to the whining in my own head, much less listening to me whining on here. But I'm just really getting worn down and could use some of your wonderful words of encouragement....

Thanks, guys...

Amey-
Dare I ask if you've done a pregnancy test?

Lesa-
Your luck sounds about as good as mine! Glad you're back. I usually think that no news is good news.

Cathy

Hi everyone! I had my colectomy August 10, 2005. I am almost one year out and couldn't be happier. The surgery has been a total success for me. I had the most wonderful colorectal surgeon and the best care in the hospital. (10 days due to a pocket of infection) However, I can't remember anything for almost two weeks after I returned home. The meds were great and the mind allowed me to relax. Family support was the most helpful and the fact that I was out of pain in the near future. I can honestly say there was two bouts of pain and my first shower at home was tough. After that, no pain. I have learned to alter my diet to what works for me. (Nothing spicy, no ice-cream, steaks, nothing with tomatoes, no red sauces, and limited amounts of food at a time) I have what I call the best medicine...everyday since my surgery I have had 1-2 bottles of orange Gatoraide. I've felt great. I still have (d) and I go to the bathroom 4-6 times a day. But its all worth it! Some stools are skinny but formed...I smile! It works for me...NO PAIN! I lost 26 pounds, however, I also gained 28 pounds within the year. (Maybe the gatoraide or maybe the fact I enjoy eating again!)

My kids get a happier Mom and my husband a happier wife! (By the way, the sounds are terrible and the can of Oust is helpful...my husband laughs and runs to the other bathroom!) We talk openly about it in our home. My son is 18 and was diagnosed with Crohns and three out of seven of us have Irritable Bowel...so we all understand.

My birthday is tomorrow...and celebrate we are!

Have any questions...please ask. I'm very happy to read this site. I'd loved it a year ago.

Somer your tips are great and exactly where I've been!

Janna

Janna:  With you being a year out did the (d) slow down?  I am exactly six months out and mine has slowed down to just one formed bm per day.  I am beginning to worry - I felt better when it was 3-5 times a day and not so formed, now I am feeling a bit bloated from time to time.  I do better with eating small meals throughout the day and I mostly stick with starches, chicken, breads, etc.  I have lost 20 lbs and maintained that weight loss.  I do try different foods, but small amounts.  A bite of ice cream every now and then to satisfy my hunger for certain foods. I am wondering if the fruits and vegetables might make me go more than once a day and I am not complaining at all once a day is a blessing compared to before, but the previous six months has been WONDERFUL, going so many times a day and not being bloated. 

Lesa:  Sorry to hear about your accident.  Since meeting you at the doctor's office and knowing that your surgery was a month before mine, I have wondered about you often.  Hopefully your recovery will speed up and you will be yourself (pain free) again soon.  How many BM are you having a day?  I also agree with you, our colorectal sugeon is the best in the world.  Hope you fell better soon.  I will keep you in my prayers.

Would like to hear from anyone else that is between 6-12 months out from surgery and how many bm are you having a day and wondering what kinds of foods to eat to make me go maybe 2-3 times a day. 

Nonna (Sandy)