Has anyone on this board had a TC due to constipation?

If so, how severe was the constipation? How long had you been dealing with constipation?  What meds were you on? What did the Sitz Marker/or any other tests show?

Thank you so much for replying Robin.  My anorectal manometry was normal.  My nerves are functioning normally, all except my tendency to "hold" back when I push to make a bowel movement, something I am working on right now to not do.  My defacography showed a significant sized rectocele which I am seeing a gyno for soon to get it fixed.  The doctors are hoping that if I get that fixed, that I will be able to move my bowels.  I know this isn't going to help.  I passed 3 markers of the 24 after 8 days.  Most all of them were in the sigmoid.  None of my doctors know what to make of this.  I am extremely uncomfortable.  Do you think this warrants having surgery?????

I would love to know others opinions.  I talked to a few surgeons.  One said he would gladly take it out, the other said if I can relieve myself with hot water bag enemas (it takes 3 mind you every 3 or 4 days) then to do that the rest of my life, the other surgeon says that fixing my rectocele will help me move my bowels.

Did you try eating a lot of fiber before having a TC?  I seem to get worse when I eat fiber.  Well, know, I can't even eat fiber because of gastroparesis...it is especially hard on the stomach to digest.

I certainly hope you don't have gastroparesis.  If you have a "lazy" small intestine, that may not be a good sign.  Johns Hopkins diagnosed me with "general dysmotility" from top to bottom.  I have not had any studies on the small intestine however...the test you are talking about..is it the small bowel manometry...I think that might be it...there maybe one other test that shows small bowel motility though. 

I have GERD as well.  I have tried Reglan, erythromycin, and domperidone (not approved by FDA in US).  I can't tolerate the Reglan, domperidone gave me chest pains, and e-mycin makes me feel nauseated and didn't really seem to help.  I am down to 92 lbs. because I literally feel full all the time.  Add constipation on top of that, and you can imagine how I feel.

I just tried Amitiza last week for constipation...didn't do anything but make me nauseated. 

It so good to have encouragement on this board...I want a permanent fix for the constipation, not just another pill. 

I have a friend who has gp and just had a TC.  Her gp is getting better now.  I did read that having a TC will most likely not make your symptoms worse or better if you have gp.  Some feel better, some may feel worse, it depends on the person I guess.

Praying that everything is ok with you and you don't have gp.  Keep me updated.

Lindsay

Hi Lindsay-

I am confused as well...EVERY doctor I have met says that general dysmotility is number one reason why you should NOT do surgery. But basically every person that I have asked or emailed and who has had this surgery, tells me how good they feel and how relieved they are that they took this big step. I cannot understand why there is this difference in opinions??

Hugs,

Andrea

Lindsay- I wish I would find a doctor who is willing to do surgery on me!!! But they all just don´t get it...or they tell me that it would actually make things worse in my stomach and/or small intestine. But I am actually scared of surgery as well because I am so compromised right now and a colectomy is a huge surgery.

Andrea

LINDSAY - I really feel bad for you and all the issues you're going thru right now.  You sure don't weight very much at all - poor thing!!!  I wish I could say that about me - LOL!!  Maybe you should request a "small bowel manomatry" just to be on the safe side if your doctor is wanting to do a TC.  I wasn't aware of any tests that could/should have been performed in this area.  I'm sure some type of tests will be in my near future.  I just have to break down and call my GI.

I must say that within the first three weeks post-op, I lost 30 pounds.  At this point and time I've regained 20 of those 30 and I'm 10 1/2 months post-op.  I know from reading some of the posts in the TC thread that some people lose and others stay the same.  Everything about this surgery is "different" for everyone, considering the fact that the reason we had it all relates some how or another.

I did not do well on the Amitiza either - it really made me feel "goofey" - headaches, dizziness, and just blain blah!!  Than combined with Zelnorm did absolutely NOTHING for me.  I have honestly tried every route possible and for me surgery was my ONLY option.

AMEY - You and I sound similar in so many ways, which I've talked about in the TC thread.  The odd thing with me on the "defogram" - I was unable to push any out, yet my anal manomatry test was good.  Maybe having the pelvic floor dysfunction had something to do with you failing the "defogram"

ANDREA - You poor thing!!  I cannot believe that the doctors there still aren't willing to help you out.  Maybe you need to come to the states and find a good colorectal specialist - it appears that my be your only option.  I wish you all the best and hope that someone somewhere will take on your case and do something for you!!!

Amey,

Yes, I'm able to evacuate my bowels since surgery.  My anal manomatry was considered good, however, for the life of me, during the defogram, it just wouldn't come out.  I know this sounds gross but there were many times that I had to "manually" remove huge hard stool prior to surgery. 

I've been home as my surgery was last November.  Even though I've slowed down significantly (once a day or every other day) I'm still pleased with the surgery and thankful for it. 

Lindsay-

do you not remember me? I am the one from the GP yahoo group!

You have my private email address and emailed me a few times.

Love,

Andrea

Eerual,

Your poor daughter! What a difficult challenge this must be for you both. I have suffered with motility problems and severe constipation since I was very young. I can recall having barium tests run when I was 12 years old. It was not until I was 19 that I was diagnosed with chronic constipation and slow motility. Like your daughter, my nightly regime was a nightmare. First, I would start my day with a large class of Miralax (double dose). Then, throughout the day I would have to take Sorbitol laxative solution (several Tbs fulls) with large glasses of water followed by many heaping Tbs of Milk of Mag. At 3pm I would drink an entire bottle of Citrate of Magnesium. At 5pm I would take more Sorbitol with a large glass of Miralax. Then another bottle of Citrate of Magnesium at 8pm. Finally, every day I would drink 4 cups of prune juice. I also took Zelnorm, when it was on the market, Reglan (which makes me feel really weird and dizzy), Amatiza (which is about as affective as children's vitamins), Motilium for the slow transit, and tons of potassium pills because my eletrolyes were so low. I can relate to some of what you are going through. I have had 4 surgeries to help me overcome the laxative dependancy and now, for the first time in over 12 years, I am laxative free. I had an ileostomy surgery nearly 6 weeks ago and my life has been blessed every since. I hope your daughter finds a solution that works for her. She is very fortunate to have a mom that is seeking answers. Please let me know how the appt with the GI specialist goes.

Best Regards...
Amey

Lindsay, I can understand what you're going thru.  I had rectocele surgery a year ago and it didn't help.  Afterwards, I was very constipated and I could go for a month without having a bowel movement.  I tried every laxative and faiber imaginable.  None worked.  about 6 warm water enemas would eventually work.  You cannot live that way. 

I saw a surgeon at Cleveland Clinic in Florida and he ran 8 days worth of tests.  I had 23 of 24 markers left in my sitz test.  I was diagnosed with constipation and colonic inertia.  Two months later, August 8 this year, I just had a total colectomy and am still recovering.  I return to work on Monday and am going to work part-time for two weeks.  It is a huge surgery and there isn't very much information about it.  Look up Dr. Wexner on the internet and you will also find much information.  He is one of the world's best colorectal surgeons. 

I am very happy that I had the chance to have my colectomy.  At first I went to the bathroom a lot.  Now, I average about 4 times a day and eventually I can eat anything that I want.  Right now, I am staying on the bland side of foods, like baked potatoes, bagels, chicken, and egg rolls.  Soda will blow you up, so no carbonation.  Sweet tea has been my saviour.

After surgery, you will be very sore, and feel like you'll never get better.  But guess what, you will and feel better and more healthy than ever.  I have gone from a size 18 to 14 and am loving my new body.  I had an open colectomy so it was a big incision and took awhile to heal, but it's almost closed now.  I have to think about everything that I put in my mouth now, so I am really eating healthy and drinking loads of gatorade to keep my electrolytes up, especially while the weather is so hot. 

I wish you lots of luck with whatever happens.  Take care, and know that it's not the end of the world.  I'd do it all over again in a heartbeat. 

Lori 

Lindsay, I'm glad that maybe I can help.  All of my markers were in my descending as well as sigmoid colon.  My husband had to give me big bag warm water enamas every 4-5 days, too.  I eventually had little balls come out of me and it was extremely painful.  It took a long time in the bathroom for me too, and I was exhausted afterwards.  I also had to go to the hospital 3 times to be disimpacted, which is terrible.  I've been thru all of the meds, too, and they didn't work.  I would bloat up and be gassy, but still unable to have any movement.  Same with fiber.  I went thru this for a year, and felt like it was taking me forever to get help to get me well.

 

I don't want to sound discouraging, but you have to try and eat and gain some weight.  I don't know of many doctors that will do a total colectomy for patients when their weight is already so low.  This is serious surgery, and afterwards you'll lose alot of weight just from your colon being removed, and then uncontrollable bowel movements.  I went about 15 times a day at first, but I've read that some go up to 25 times per day.  My doctors said that you need to drink at least as much as you lose during your bowel movements.  What I'm trying to say, is losing weight is uncontrollable and it will happen without trying.  You don't have the weight to lose and still be healthy.  I have struggled with low iron and low blood pressure since having my surgery.  Your whole life changes fast and you'll get to know your body well, but it takes time, and at least a year for everything to be working together.  You're right, you have to eat wise after a total colectomy.  My stomach has shrank and I have to eat small meals frequently.  I was released from the hospital after 4 days and doing great.  The next day, I got really nauseous and couldn't eat anything.  I had to be readmitted for another 5 days and the doctors made sure that I was eating before they would release me.  It was very difficult.  Before having this surgery, you have to try and be in the best physical shape that you can be, because alot of your stamina will slow down and it takes alot of energy to get better.

 

You are so lucky to have a little girl.  I have 3 boys but they're older now.  My youngest is 15.  Anyhow, for six weeks you cannot lift over 10 pounds and it is extremely important that you do this.  At first, I couldn't even lift the 4 pound bottle of dishwasher soap and had to work up to it.  You also cannot bend at all.  Again, I don't want to scare you, but for the first 2 weeks I couldn't even wipe myself.  My mother and husband constantly helped me.  I was lucky to have them.  I've been home for 8 weeks and am finally going back to work.  It'll take the first 5 weeks to even start healing and feeling human again.  I would really recommend holding off on school for a semester after having surgery.  You will also need help with your daughter at first, because there is no way that you'll be able to hold her or lift on her.  You won't be able to take care of her on your own.  Can I recommend something?  I had a nursing student come to my house and help out a few hours each day.  She did anything that I needed help with and didn't ask for alot of pay.  It's good experience for them, helps them with earning money, and helps you alot.  You'll learn to love hugging your pillow to your belly and will be afraid of anything touching it at first.  Your doctor will also tell you that having a motility disorder and a total colectomy, you have to walk alot for the rest of your life or everything could stop working again.  At first, you have to push yourself to walk so that you won't get gas pains.  They hurt and you'll want to walk.

 

My doctor tried to do my surgery lapro but it didn't work, so I had open surgery.  Although lapro scars heal lots faster, you will still go thru the same.  Lots of gas, uncontrollable movements, and soreness.  The first 3 weeks you might as well figure on going nowhere as you'll have lots of accidents.  I had to wear diapers for quite a while.  Funny, where my lapro cuts are, are where it hurts at times the worst.  Also be aware that total colectomies sometimes end up with permanent or temporary illeostomies, too.  Sometimes people end up with a temporary illeostomy and have to have surgery 3 months later to close it.  Your surgeon will go over all of the possible outcomes with you.  He'll tell you too, that whatever symptoms such as gas, bloating, and cramps that you have pre-surgery could exist after surgery.  I have alot of gas yet and cannot help it.

 

My doctors have told me that I can eventually be able to eat anything, but I'll always have to chew, chew, chew.  It's important to chew your food.  They told me that after every forkfull of food to put the fork down and chew.  Then pick up the fork and start again.  The reason for this is that your colon will be gone.  If you don't chew properly you could get an obstruction and will cause you to have surgery again.

 

My total colectomy has been a gift, but it is a lifestyle change.  You will eat wise afterwards, but you have to find a way to eat now, too.  It's the most precious thing you can do for yourself, your health, and your family right now.  Your body can't afford to lose much more weight.

 

Sincerely,

Lori

 

 

Lindsay, right now I can't tolerate alot of foods yet.  Anything with milk in it will send me to the bathroom with runny bowel movements.  I don't eat anything that is tough, always steamed vegetables.  I'm eating lots of chicken salad, tuna, fish, and turkey.  I'm eating baked potatoes and sweet potatoes.  I eat bagels.  Lots of bland foods right now until my stomach is ready for them.  If you look up low residue diets on the internet, they are great to start with.  I drink lots of gatorade and sweet tea.  On days that I haven't gone to the bathroom and get a little nervous, I eat a piece of Dove sugarless chocolate and it does the trick.  If I can't slow down with bowel movements, I eat some bananna.

 

Yes, I had the small bowel manometry and my test was alright.  I also had to take a 2 hour test where I ate an egg sandwhich to make sure that my stomach worked correctly and could pass food along in a timely fashion.  I passed that, too.

 

My stomach shrank after surgery, because I feel full to the brim faster and am supposed to eat small meals more often, which has worked great with me.  Yesterday I had half of a fish sandwhich at McDonalds for lunch, and ate the rest about 2 in the afternoon.  With your gastroparesis it sounds like you eat like I do.  Will it ever go away?  I was on zelnorm but think that it was taken off the counters because it wasn't safe.  It didn't work for me but gave me headaches.  I'm sure that it's not safe.  Make sure for your own sake.  I have lost weight because stuff goes thru me now, I'm not holding it inside anymore, and I'm watching what I eat so I don't spend my days in the bathroom.  I have to have some control before returning to work (Monday).  I just got a work letter to work partial days the first 2 weeks.

 

My bowel movements are runny or little globs.  Never formed.  I don't leak when I pass gas.  At first after surgery you don't make it to the restroom on time, or you don't realize that you had to go.  It comes back to you after about 3 weeks and then I knew when I had to go and just had to get there in time.  I've had accidents in bed where I go when I'm sleeping and don't realize it.

 

I found a student just by posting a paper on campus and interviewing the 15 students that replied.  I asked them alot of questions over the net and then met with some to narrow it down.  Mine turned out to be excellent.  I paid her $6 and hour and I could wipe myself by then but she would have helped.  She did laundry for me and changed sheets.  She got the pans out so I could start dinner.  She emptied the dishwasher and even painted my toenails.  It's funny how you want to feel like a woman again after this surgery.  Students can do anything and everything in about 2 hours.  Anything, just ask.

 

Lori

Hi Lindsay, the egg sandwhich test that I did was part of the 8 days of testing that my colorectal surgeon ordered for me before he could give me options available to me for the problems that I was having.

Let me say that different hospitals do give different advice.  I had testing done also at Emory Hospital in Atlanta and they suggested that I have a colostomy.  I wouldn't accept that and I saw Dr. Wexner at Cleveland Clinic in Florida.  He had all of my testing redone and more for the 8 days.  He is actually one of the number one surgeons in the world and also practices and teaches in many countries.  He is one of the most caring and dedicated colorectal surgeons ever.  I cannot say enough good things about him and the doctors that work with him.  Only doctors run the tests for him; no techs, and everything is accurate.  I saw doctors about 3 times a day while in the hospital and they were exceptional.

I had a rectocele and cystocele repaired a year ago August.  Actually, I didn't even realize that I had them until I went to my gynocologist for my yearly exam and he said that I should have surgery to repair it.  Stupid me.  I had the surgery, and constipation from there on.  I never had constipation problems prior to my gyno surgery.  I guess that I was fortunate because intercourse never hurt me.  This may be personal, too, but since my total colectomy surgery almost 2 months ago, my sexual relations with my husband have been so much better.  I don't know if it was the surgery or what, but I'm loving it.

Please ask your surgeon alot of questions, especially with your stomach experiences.  I believe that they do the egg test because your stomach has to be able to work so much harder with your small intestine.  If it can't work you'll really have a difficult time.  I was readmitted to the hospital the day after I was released, because my stomach wasn't ready to work without my colon.  Your stomach makes bile, and unfortunately some patients have a really tough time with nausea and being able to eat at first.  I was one.  For an entire 10 hours in the emergency room I vomited green bile and could not stop my bowels.  My mom and husband actually filled trash cans from me and it was horrible.

Ask the surgeon how your diet could be affected after surgery with your gastroparesis, and if your gastroparesis might go away if you had a total colectomy.  Have you had much abdominal surgery before?  I had my appendix out and a hysterectomy before, so when my surgeon tried to do lapro it didn't work and he had to switch to an open procedure.  Ask you surgeon how many days does he expect you to be in the hospital.  One of my biggest questions was will I have to have a nasogastric tube in during the hospital stay.  You have one in during surgery, but some surgeons leave them in afterwards.  My tube came out before I came back from surgery, but because of my not being able to keep anything down they almost put it back in because it suctions all of that stuff from the insides of you.  I live about 9 hours from the hospital where I had surgery, so I had to stay another week in a hotel before my surgeon would allow me to travel.  Arrange for extra help before surgery and try to have someone stay the entire time in the hospital with you if you can.  (You will be so appreciative of this). 

If you decide to have surgery, make sure that you buy some diapers; you'll like having them at first.  Also, you might want some extra long pads for your panties.  I try to wear my panties more, because I'm allergic to the elastic on the legs of the plastic diapers and I turn purple from it.  I also was glad to have cream for my sore bottom for awhile.  The constant bowel movements and bile will make you sore.  For me, baby wipes were better to use than toilet paper and still are.  They keep me from being so sore and less sensitive.  They're worth it.  Plus, if you have a little girl, you already have wipes around!

It's hard to know what to ask the doctor beforehand.  I've heard that some doctors will take out your appendix at the same time as the tc if you want them too.  It's hard to remember much more.  I drink lots of gatorade because of the electrolytes and I don't want to be dehydrated.  I've gotten an iron deficiency during all of this, so I take flinstone vitamins with iron, and yes they are for adults too but less harsh on the tummy.

Wish you the best,

Lori