Total colectomy part 17

Yes, I sure did. You are right about it lingering. It seemed like my back hurt forever. Walking hunched over, protecting my belly after the surgery made it worse. The nurses told me that was common becuase of the hard/cold surgical cut away (?) table. I also ended up with a hairline fracture, can't remember exactly which vertebrae, from the pressure on the back and the bones being so brittle from the steroids.

I think my chiropractor told me years ago that the back and stomach muscles both are what makes you stand upright and straight. And if one of set of them are lazy, then you have aches and pains. Makes sense to me.

Everything is still finding it's new home internally. It will take a little while. I know you have heard it before, just be patient. Keep walking. That is the best exercise you can do.

Hello Everyone...here is more story:

Ok, I have had chronic constipation since 14.  Diagnosed with IBS at 14 as well as GERD.  I am now 26.  I will try to explain everything in a nut shell.  When the constipation began, I took Citrucel, other persribed meds for spasmatic activity and Propulsid to help empty my stomach.  Nothing was working.  I ended up over time giving myself fleet enemas.  I was on Zelnorm, Miralax, and the latest, Amitiza.  I tried the natural way...got really sick.  I now have to give myself ho***er bag enemas...it is the ONLY thing that makes me feel relieved.  If I take citrate of mag...it takes almost 7 or 8 hours to start working and it doesn't make me feel empty.  Miralax, I have drank about 4 full caps for 3 days straight...and nothing.  Dulcolax...just cramps.  MOM, sometimes go, but only a little...makes me nauseated.  That is why I stick to the ho***er bag enemas...3 and I am done (takes me about 2 hours to get all the water out though)  I do this about every 3 or 4 days...whenever I can tell I am getting full of poop.

I have been to Hershey (live in PA) and they diagnosed me with colonic inertia, rectocele and enterocele back in 2002 I think it was.  I went to Johns' Hopkins this past May after I had my daughter (she just turned 11 mths) and they diagnosed me with general dysmotility...I have gastroparesis (paralysis of stomach...so I can't eat very much).

I have spoken to a few surgeons.  One is saying he would gladly do it.  The other is saying if I can relieve myself with enemas then to do that the rest of my life (I don't know about you...but that isn't a life...I had to take my enema bag with me on my honeymoon).  And the final one is saying fix the rectocele and I should go to the bathroom.

The Sitz Marker showed I passed 3 rings in 8 days (my study was kind of screwy and it ended up being 8 days instead of 7).  Most of the markers were in the sigmoid. 

I don't eat a lot.  With my gastroparesis it is really hard.  But, I really should be able to pass some bowel...don't you think?  My day may consist of a cup of applesauce, a bowel of rice, animal crackers, and a handful of rice cakes or pretzels.  That is about all I can eat...some days not even that much.  I have been given Reglan....terrible side effects, domperidone (not FDA approved in the US and gave me chest pains) and erythromycin.  Nothing seems to be helping.  It should be noted, before I had my daughter, I was able to eat normally and ate healthy.  I exercised regularly, and still no BM.

What do you guys think?  I have a friend who got a TC who has gastroparesis and her symptoms are improving and she is going regularly.  Although her markers were scattered throughout her colon.

I don't want to keep trying new pills, giving myself enemas, etc.  I want a permanent fix.  Do you think I am a candidate?

If I hear one more doctor say eat more fiber I am going to scream....that made my symptoms worse!!

Any advice is greatly appreciated.

Sincerely....Lindsay

 

TERRI - Thank you for starting "PART 17"!!  I knew there would be someone here that could answer your questions regarding back pain!!  Aren't these people wonderful?  For me personally, for weeks post-op, my entire body, even my hips ached.  It really wasn't what I called "pain" just aches" if that makes sense.  I think when one's body goes from doing so much to basically not much at all - it just throws it in shock!!  Just laying and sitting around unable to get comfortable plays a toll on the entire body.  I was to the point that I was walking circles in my own house just to keep moving.

LINDSAY - I'm so happy you found this thread!!  There are SO many wonderful, helpful, and encouraging people here!!  I really don't know what I would have done without all these wonderful people before, during, and after surgery.  You will find a WEALTH of information here.  The one thing I can say for you to do is go back to past "parts" and read, read, read.  There is no such thing has having too much knowlege and you will sure find it here.  Believe me it takes time but worth every minute you spend searching!! 

Lindsay,

I think you and I probably support the entire laxative industry by ourselves LOL. I have taken everything you mentioned for consipation. I still take Motilium twice a day for the CI. My total colectomy would have been a success story IF the muscles in my rectum worked properly. The muscles in my rectum do not function together as one cohesive band and therefore stool cannot pass through my rectum (this is why I failed the defocography). However, if you passed the defocography, which indicated that you can evacuate your bowels, then the surgery should be a success for you. After my surgery, I felt foods moving through my intestines but then the movement would just STOP. I thought I had a blockage but it was my rectal issues. I assume you will feel things move through your intestines and then ....evacuate. I had a TC in 2001 and then two more surgeries to help with consipation in 2005 and 2006. It wasn't until 2007, and I was put on a bag, that I have been able to feel healthy. I still have CI. Foods still move slow and the Motilium helps a little. This surgery has saved my life. Like you, I ate very, very little (if I ate at all). I had to have blood taken at the lab every week for several months because I was so low in nutritian. I was in the hospital repeatedly for dehydration, low eletrolytes and kidney failure from the lack of substance. I am 5 weeks out of surgery and I am doing much better.

PS. I have been laxative free for 5 weeks! First time in nearly a decade!

I am glad that you can have a surgery that will change your life. I hope your surgery will be a great benefit to you.

Hello Irish (Terri),

I just want to let you know the cherry jello will turn things red!  I have an ileostomy, and I sometimes scare myself with the "red" thing when I forget what I have eaten or actually, just not paid attention UNTIL I see the red results.  It scares the bejesus out of me when that happens until I STOP, THINK, and REMEMBER!  The green (lime) doesn't come out green for me. (????)  I can't explain that.  I do know that grape Powerade, which is my favorite flavor, does turn things a strange, sorta green color.  Don't get that either.  Even tho cherry is my favorite flavor of jello, I tend to stick with orange or peach, when I eat it, just to keep from scaring myself.  It's really weird.  I drink a cranberry/black cherry juice mixed 1/3 juice and 2/3 water all the time.  (I mix my own and put in water bottles.  And freeze them to make slushies.)  NO RED when I drink that.  But let me eat cherry or raspberry jello!  And, I read somewhere else on this forum and agree, beets will turn everything red.  Let us know what you experiment shows for you.

A rectocele is where the muscle/skin tissue that seperates the vagina and rectum collapses and forms a pouch.  It is up pretty high though.  It comes from years of bearing down, weight lifting believe it or not, and of course child birth. 

I intend to get that fixed first, but I am almost positive that is not going to help the stool move quicker through my colon.  It may help with the evacuation, but my colon needs to move faster...and I have tried everything out there to get it to do just that. 

Terri,

Also to give you a heads up, if you eat strawberrys' your stool will be red also, and if you eat
blueberry's your stool will look like tar. I scarred my self several times until I realized what
I was eating.
Good luck

April

Hi All, I wanted to give you an update on my last 4 mos.  I have been seriously ill (as most of you know)since 4 weeks post-op from my TC.  I have been in the hospital 7 times and on home TPN thru a PICC line for 14 weeks.  My surgeon didn't know what the problems was, she ran CT's, barium swallow, gastrografin enema and numerous xrays that showed a hugely distended and dilated small bowel.  She thought I had an obstruction but it wasn't showing on film.  I was slowly dying, losing hope and in terrible pain.   I was admitted the Wed. before labor day once again because the pain/vomiting were too bad to handle at home.  The GI doc on call ordered another CT w/ contrast and it showed the usual but it also showed what appeared to be an obstruction.  He did a scope and it wouldn't go past the anastimosis sight.  I had surgery the Tues. after labor day to remove the stricture.  I stayed 11 days in the hospital and am thrilled to say I am able to eat now and should get off the tPN and the PICC line out this week.  What an ordeal.  I thank God for my surgeon, she didn't give up and she was the only doctor that was following me closely.  I know I could have died but I am so greatful to be alive.  I pray I never have to go thru anything like this again.   I also found out I don't have MS but I have severe autonomic shutdown and mixed connective tissue disease.  I have chronic anemia and low white count from this disease and I had to have 2 pints of blood while in the hospital due to my anemia of unknown cause.  Hopefully my rheumy and neuro will figure it all out.   Thanks for all your care and concern.

Lindsay,

My doctor said that my pevic floor falls really low when I push to have a BM because I have had to strain for so long to have a BM. He said I have the pelvic floor of a 90 year old woman and I am only 33. He also showed me the defocography xray. On the xray you can see that the interal muscle of my rectum "baffles" (his words not mine) inward blocking the rectal passage way which obstructs stools from passing. He did not think this could be repaired. I have already been through biofeedback to retain my rectal muscles and it was not successful. My doctor never said the words "rectocele" so I am not sure if you and I have the same thing. I will tell you that I have had this problem for years and the TC did not make it better. The only thing that worked was closing up my rectum and putting me on a bag. However, I doubt most surgeons would give you a bag at this point. Your probably going to need to see how you do with the TC first and then evaluate things at that point.

I hope this helps.
Amey

Michelle

What an ordeal you went through! My heart goes out to you. I'm so glad that your doctor did not give up looking for what the problem was and that she was able to fix it with surgery. How wonderful that you're feeling better and can eat again! I praise God that you are alive and on the road to recovery.

Cecilia ><>

WOW - THIS BOARD HAS SURE BEEN BUSY!!!  I will try to address as many and all as possible!!

RICK - It's so nice to hear you're home and on the road to recovery.  Congratulations on your walk - I know you enjoyed being outside even if you moved slowly.  I know you must be thankful that you're able to eat again!!  I wish you continued success and hope you continue to post and let us know how you're doing!!

MICHELLE - My heart sure goes out to you sweetie and all you've been thru!!  I'm sure you were extremely scared during this trial.  Thank God your doctor kept a close eye on your situation and didn't give up.  I'm sure you have a very long road to recovery ahead of you considering how sick you were.  Remember to take it one day at a time and pay attention and listen to your body!!

APRIL - You will notice that you will have better days than others.  I know it's hard to do, considering the fear of being "constipated" again, but don't get too alarmed.  You will have better days than others.

There are things you can do to help move things along during the "slower" days.  Try drinking Mott's apple juice - eat some prunes - sugar free chocolate candy - even some MOM or magnesium caps (of course not all at the same time).  You'll be surprised at what these things can do for you!!  Please keep us posted.

MOM2SOPHIA - I think I mentioned that I had a large rectocele as well, which was discovered during the defogram.  I was immediately referred to the colorectal specialist/surgeon because all the other tests confirmed CI.  During one of the consultations I asked if he was going to "fix" the rectocele during the TC, however, he informed me that he wouldn't need to fix or repair it - it would take care of itself after the TC because I would no longer be bearing down.  A rectocele will basically go away if one doesn't bear down. 

Now on the other hand, if the only reason one isn't able to have a bm and the cause is solely a rectocele - not colon problems - then they would do surgery to repair it.  But as you've indicated - all your tests are coming back as CI.  I think I would bypass the OBGYN and find a good experienced colorectal specialist/surgeon to talk to and see if they feel a TC is in order for you.

IRISH - How are you feeling?  I hope you're regaining your strength each passing day and continue to grow stronger as the days pass!!

I hope I didn't leave anyone out!!  For everyone here, please keep in touch.  Everyone has something to contribute to this thread that will help and encourage others going thru difficult times!!!

Rick

I'm so happy to hear that you were finally able to escape the hospital. Yipee! Doesn't it feel to be home? I don't know about you, but I can't stand hospitals and always feel better being at home.

I can understand your concerns regarding the cancer thing. The good news is that the sigmoid is the last part of the large intestine and your cancer was in the ascending colon which is the beginning of the colon. The beginning of the ascending colon is where the ileum connects.

Robin

I'm doing pretty good. I still have that backache, but it is getting better each day. Other than that, I feel pretty darn good. Sometimes when I'm doing certain things, I notice a sharp pain on the inside. It's one of those pains that takes your breath away for a second. I see the surgeon tomorrow, so I'm going to ask him about it. I wasn't told what I can or can't do, so I've been doing whatever I feel like doing. The only thing I have been staying away from is lifting heavy things (over 40 pounds), but I have been able to carry laundry baskets full of clothes, vacumn, and the normal housework stuff. I just don't do a lot at once and take breaks when needed.