Total colectomy Part 16

BOOTYNOWORKY - I'm thrilled to hear you're doing well.  I must say we've all experienced some set backs somewhere down the line, but thankfully you're doing well - HAPPY TO HEAR IT!!  Unfortunately I'm not able to help with the "back pain" and I'm sorry you're going thru this!!  As we've seen many times here, there's always someone who can help here!!

AMEY - Thank you for explaining things in more detail for me and not getting upset over the questions.  I really do care about each and everyone here and I never intend on step on toes. 

I admire you in so many ways.  You've been thru so much in a short period of time, not to mention, something you never expected to be dealt.

AJ - Yes, you will be a new person post-op!!  Just keep in mind that the healing process does take time so do not get discouraged!!  Like I've stated many, many times, this is a big surgery and even though there's a lot of information here and each handle things in their own way - you're first couple of weeks are the hardest and you will experience a lot of discomfort.

IRISH - I'm also excited your time is nearing!!  Thanks again for all your participation here and sharing so much information on a host of subjects.  I also admire you and all you've given here!!

Sorry if I've missed someone!  If I have missed you I'll get you next time around - just know my heart and throughts are will you all!

 

hi, everyone

I'm new here.
I've been constipated for whole my life and finally I was diagnosed of colonic inertia this May and suggested a total colectomy by my GI specialist.
Since then I've read this site and made my mind to have a surgery.
I met a surgeon several times and he let me retake anorectal manometry test which I faild last year (my pressure was in normal range; I could expell the balloon completely; but could not expell enough water which was only 5cc) last week.
But I failed it again. I could only expell 5cc. My surgeon said he needs it 60cc.
I wanted to cry. I though I could have surgery this month.
I was suggested that I go to UCSF for biofeedback.
Last year, I took six sessions of physical therapy (keggle exercise, anal massage, breathing technique, etc.) counted as a biofeedback which was recommended by my GI specialist after I failed the test last year.
Has anybody here got a better results who failed first and after biofeedback passed the test?
I'm getting worried I might not be able to clear the criteria for the surgery....

I really appreciate for each one of you who sharing your own personal experiences.
I enjoy reading each information and am educating myself every day. The hard part is that English is my second language and it takes me time to read. I need dictionary/googling.

Post Edited (peace38) : 8/28/2007 6:58:13 PM (GMT-6)

Peace

I wanted to welcome you to the forum. Since you mentioned UCSF, I'm assuming that you're in the Bay Area. I'm out in the Central Valley but will be coming to the Bay Area for my surgery. Most of the others are on the East Coast, so you probably won't hear from them until tomorrow. Resa is another West Coaster, so she might pop in to say hello.

Jaclyn

Anorectal manometry is a test to see how the muscles and nerves inside your rectum are working. If I understand the test correctly, it's to make sure you don't have problems with your rectum that is causing you not to be able to have bowel movements. In other words, you wouldn't want to have a TC done if the problem is with your rectum.

I'm thinking that your doctor might be talking about dumping syndrome. That usually occurs in people that have had all or part of their stomach removed or in people that have had their stomach bypassed for weight loss. It's caused when the stomach (or what's left of it) dumps food into the small intestine too quickly. The main symptoms are nausea and abdominal cramps.

Some of the things they suggest for dumping syndrome is to eat small frequent meals (six per day), don't drink liquids with your meals, and to lie down after eating to slow digestion down.

I just happened upon this list while doing some research for colonic inertia, and you all have such great information from a patient perspective! I've had severe constipation my whole life - I actually never knew I was constipated because it's not the kind of thing you really chat about with your friends, and my body always felt this way so I never knew anything different.

about 7 years ago I started having severe abdominal pains; very localized and so low down I thought it was gynecological in nature. I went to one doctor after another who couldn't find anything wrong and told me it was all in my head, or that if "I didn't think about it so much, maybe it would just go away". I knew I wasn't crazy, so I started doing a lot of research on my own and brought all my history and pain diaries to the next doctor who directed me to a great GI doctor who did all the tests you all spoke of and has diagnosed me with colonic inertia. I have been on every medication and laxative treatment which do nothing for me. The surgeon wants to do a total colectomy.

Tomorrow I'm having a small bowel series test done, and next week an upper endoscopy, following those tests I have another appointment with the surgeon to make the final decision on surgery. Have any of you who've the TC surgery had issues with upper GI problems? If so, do you wish you had not had the surgery? I also read about a lot of small bowel obstructions and incontinence as complications of the surgery. What should I expect? Also, I live alone, and my parents would come up to help me after the surgery. How long are typical recuperation times at home following surgery, before you were back to work, and how long did you feel you needed someone around to help?

I know I have lots of questions but one more. April, I saw that you went to Robert Wood Johnson, which is the same hospital I go to. Did you have a positive experience for the surgery? I read that you've had some post-op complications. How did the hospital respond? Were you pleased with the surgeon?

Thanks everyone!

Ananym and Peace38,

Welcome to Healing Well. I'm glad you found us, but am sorry that you've had to deal with constipation for so long. There are a lot of wonderful people here who know what it's like to have colonic inertia, so you are in good company.

I had the opposite problem - chronic diarrhea - for 7 years from Crohn's Disease. I tried every medicine and diet, but nothing worked, so I finally had a proctocolectomy (surgery to remove the large intestine and rectum) and have had an ileostomy for 18 months. I feel great now and do not regret having the surgery.

If you have any questions about anything, just ask. We're all here to support one another.

Take care,
Cecilia

Resa

Yep, it's right around the corner and I'm excited and nervous at the same time. I don't see how you dealt with it for such a long time. Two years was quite enough for me. How is your vertigo doing? I hope you're feeling much better. I'm looking forward to coming to the Bay Area to cool off. It's 105 here right now.

Peace

Right now I'm feeling okay. I usually don't start feeling bad until Thursday - when I'm really backing up. Since the magnesium citrate isn't working like it used to, I'm not emptying as much so I feel worse earlier than I used to. It's not a magnesium shot; it's magnesium citrate that you drink which is a laxative. I am excited and nervous about the surgery. I just want to be normal; or as close to it as possible.

Irish mom

I totally agree with you; I just want to be normal or as close to it as possible. Pain-free, bloating-free. To do list-free.
To keep my colon move in some way, I have to do enema mornin/night and take Japanese version of MOM (which is made from pure sea water and a little bit more palletable). Now that I failed the anorectal motility test, I've started using my anal stimulater which helps to keep the tissue around the anus nice and soft. I want to be free from those ritual some day, too.
Take care.

I just finished my small bowel series. I am so sick of these barium studies! It's bad enough chugging down the barium, but the after-effects are terrible when you can't pass anything! The radiologist said it looked normal overall, which should be good that my problems are predominantly in the colon. Question: if you can't eat fats or red meat, and someone else said they had to stay away from fruits and vegetables, what do you eat?

PEACE38 and ANANYM - Welcome!!  I can SO relate to the two of you!!  I too suffered my ENTIRE life with constipation.  From the age of 15 months old until one month shy of my 44th birthday!!  I had my TC surgery 11-09-06 and I can say for the first time in my life it felt wonderful to finally be able to have bm's for the first time in my life!!  There wasn't such a thing as "too many" for me.  I welcomed and thanked each and every one of them.  For me personally, the first six months post-op I went anywhere from 5 to 10 times a day - give or take a few here and there.  After the sixth month post-op I began to slow down considerable, however, my surgeon did indicate prior to surgery that once the small intestine gets used to playing the roll of the colon - slowing down isn't uncommon.  Now I go once a day or once every other day, again, give or take a few here and there.  I still consider my surgery a success and would have it all over again in a heartbeat!!!

I'm sure you've read that each person is different in a lot of areas and that is one of the most important thing for you to keep in mind.  No two are alike in the healing process or in the foods they can or can't tolerate post-op.  Yes, there can also be temporary set backs - there is no surgery that guarantees this.  Just recently, after several tests, I was informed I have a "lazy" small intestine, however, I'm still thankful for the surgery.

For me personally the healing time, when I started to actually feel "normal" was a good 16 weeks.  Others here were on the road to recovery in a much shorter period of time.  You just have to experiement with what foods your body can tolerate at certain times.  What was off limits one week can be tolerated the next - I call it trial and error!!  I pretty much can eat what I want now with the exception of spicey foods.  I just have to limit how much I eat of it.

To ALL the rest of you - I see that some of the veteran members here hav done a great job of answering all or most of your questions and concerns.  Please feel free to ask - as there are some wonderful well informed people here - a real God send!!  

Resa  I too was a sweet-a-holic..I craved sweets, chocolate, you name it before the colectomy.  Since I have had the surgery I do not crave sweets at all.  I almost seem hyper sensitive to the sweetness in foods and cannot tolerate a lot of it. (Not that I am complaining!  ) I wonder if there is any connection with the surgery?  Has anyone else had the same experience? 

I sat down today and researched on the internet a list of foods that are "commonly" found to cause problems such as Diarrhea, burning, gas, binding effect and contributing to possible blockages.  I also created a chart to help track the foods I eat and the outcome.  I am scheduled to go back to work in 10 days and unless I get a handle on the diarrhea I will not be able to.  My Dr said there is a medicine I can go on to help control the excessive bile and water in my stools but wants to wait a while longer to see if my bowels beging to settle on their own.  I do not want to have to rely on yet another medication and  I had hoped that I was free of meds once I had the surgery.  I do know that salads are not my friend right now.  I keep trying them but Whooosh..there they go!  Cheese and bananas plug me up a little too good, so I have to be careful if eating them.  It is funny how I went from never going to going too much.... I guess I am just never satisified!  LOL

Jaclyn - I just read your post about the foods that cause you trouble, bananas and cheese.  And that you really don't want to take anymore meds, and the dr wants to hold off on that too.  You might try eating a small amount of applesause before meals.  It seems to slow things down a bit for me naturally.  I still take imodium in the mornings.  I used to have to take it with every meal.  But, now I have completely cut out the things that really affect how watery the stool is, and have also cut back on the meds.  The applesauce works well for me.  Bananas do too, but just a few bites at a time, not a whole one.  Both give me the consistency of thick oatmeal...  hope that helps. 

Peace - welcome and feel free to talk about anything.  That is what a place like this is all about.  Do stay in touch and ask any questions you wish.  Good luck on your testing.

 

Thanks Peggy, I will give the applesauce a try and keep my fingers crossed!

Hi Everyone,

Phyllis - The site is www.constipated.com/Chapters/9_const_pcol.html. I tried to access this site today and my server will not permit me to enter. I could enter before I changed operating systems. If you can access this site once in you can go through the chapters by clicking the information on your left.

Jadyn - So there are two of us who lost the craving for sweets. How lucky we are. I am happy to hear I am not the only one. Since there are two of us I think maybe there probably is a connection. Whatever the reason - I am glad that the cravigns are gone.

I have noticed another food that I no longer like. Peas - I had some the other night with my dinner and could not tolerate the taste.

I hope everyone else is doing fine.