SURGERY FOR SLOW TRANSIT CONSTIPATION

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2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 4/1/2008 4:44 AM (GMT -6)   
Hello
I am new to the site and having trouble finding information/people who have had either SUB TOTAL colectomy or TOTAL colectomy for curing slow transit constipation or colonic inertia...i am thinking of having one of these surgeries, but i certainly dont want to end up incontinent or with a bag confused .  My surgeon said 50 per cent of people who have a total colectomy end up incontinent. sad
 
I would be very very grateful if anyone could reply to this thread and enlighten me regarding these two operations e.g. if surgery has proved to be a success for you or otherwise.  
 
karen x 

XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 4/1/2008 6:12 AM (GMT -6)   
Hello,
welcome. I just had a total colectomy for colonic inertia 9 weeks ago. I am not incontinent....nor did my surgeon tell me I had a 50 percent chance??? There are actually alot of us on here, but most post under the total colectomy thread. I do not regret my surgery at all even though I suffered from some not so fun complications. I am heading back to work next week and feeling great. If there is anything I can help you with or questions I could answer, let me know.
 
lizzie

HisWill
Regular Member


Date Joined Mar 2008
Total Posts : 43
   Posted 4/1/2008 6:10 PM (GMT -6)   
Hi, I am having surgery this Thurs, April 3. I am having a sub total colectomy/ileostomy. I am having this due to constipation. I didnt want to end up with a "bag" as you, but I have no other choice. I hope you find the info that you need and if  you have more questions for me, I would be more than happy to help.

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/1/2008 6:20 PM (GMT -6)   
After several tests, my doctor says I'm going to need this surgery as well.  I not only have slow transit, but also a retocele, which he says I need to have surgery on first.  He said I wouldn't need a bag; he would connect my small intestine to my rectum.  Why do you need a bag?  Also, he did say it was no walk in the park, but never said anything about a 50% chance of being incontinent.  Are there other reasons he may have said this?  I totally understand about being so scared and worried; it seems so many have had complications, but living like this is no fun at all.
 
Good luck on your surgery...please keep us posted on your recovery!

mcmom1234
New Member


Date Joined Mar 2008
Total Posts : 16
   Posted 4/1/2008 7:36 PM (GMT -6)   
The doctors in my area give odds like this not inform you but to protect themselves from lawsuits. There is a slim chance that this could happen but the doctor can say I told her 50- 50. I also have problems with my lower gut muscles and my doctor has me doing Pelvic floor exercise.

HisWill
Regular Member


Date Joined Mar 2008
Total Posts : 43
   Posted 4/1/2008 8:06 PM (GMT -6)   
The reason I need the bag is because of the reason why I need the ileostomy in the first place. I have scleroderma which is an autoimmune illness. This has caused me to lose muscle and motility. One of the reasons for the chronic constipation or colon inertia is because of the pain meds that I take for the scleroderma. I had tried so many regimens to evacuate a sufficient of stool but was unable to. Being unable to evacuate increases my risk of colon cancer and causes me to feel so bloated and sick every day. And I cant imagine that having stool just sitting in my colon is good for me. So this is why I went ahead with my decision to have this surgery and end up with a bag. They will remove my entire large colon. And from what I understand, they will take the ileum up through my abdomen to make a stoma. I am a nervous because it is only a few days away. But I do have strong faith that my Lord will watch over me and see me through this surgery and accept the changes to my body. Thanks for listening. HisWill

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 4/1/2008 8:18 PM (GMT -6)   
HisWill,
I'm sorry--I did read your posts earlier about your surgery; there are so many names that I forgot yours; sorry!
I know this is scary for you, but it seems as though this board is a great place to talk to others who have been through what you're going through.
 
I wish you the best.
 
 

ME!
Regular Member


Date Joined Aug 2007
Total Posts : 185
   Posted 4/1/2008 8:23 PM (GMT -6)   
Hi 2much2bear,

Love your sign-in name :)

I had a total colectomy surgery back in Oct 07. My pelvic floor function was fine so they reconnected my intestines back to my rectum so I don't have a bag. No one would even know I've had surgery. Just have a small 3 inch scar below my bikini line.

I was dx'd with colon inertia. I took the sitz marker test and after 5 days 23 out of the 24 markers were left in my colon.

The surgery was the hardest thing I've ever done in my life! I don't mean to scare you but I do mean to prepare you. That being said I'm 5 months out now and I can say it's one of the best things I've done for my health.

I was told I would be in the hospital around 6 days. But because my bowels didn't 'wake up' I ended up being in the hospital 11 days. When you have the surgery your bowels stop working and have to wake back up. They were afraid I had a blockage and did x-rays and then a Cat scan, but it was clear.

They wouldn't let me eat anything. I was only able to have ice chips and suck on hard candy. My advice on this, if your bowels are taking long to wake up and they aren't allowing you any nutrients then ask about a TPN. It's nutrients given thru the IV. I got very weak and was losing weight.

Then around 6am the morning of the 11th day I was in bed and my bowels just broke loose. I had no control. They got me unhooked from my IV pole and let me get in the shower and the poor nurse had to clean up my bed.

I had to eat a meal and see how I felt before they would release me. (Hospital food never tasted so good) You'll be on a low residue diet once released. My first meal home was: Roasted chicken, salad greens with dressing, cooked carrots, baked potato without the skin but with plenty of sour cream :), string beans and a dinner roll.

Everyone is different but I only had one accident after I got home. You might want to buy some Chucks to keep underneath you wherever you sit and on your bed.

I had bad spasming of my small intestines. The doctor said that sometimes people dx'd with IBS before the surgery have this. He gave me Symax which helped but he mentioned how stress effects the gut and to try and keep the stress down (yeah, right). Well, I have a perscription for Xanax so I thought I would try taking one with my meals and lo and behold that has helped tremendously. I took the Xanax for several months, but now I don't have to take anything. I have no pain. This surgery takes time to heal, so after 3 months don't be discouraged if you're still in some pain.

I also take a stool softner because after about two weeks things seemed to have slowed down. I think my bowels are just slow, so I just take the stool softner for my own peace of mind. Maybe at some point I'll try not taking it and see how I do, but for now I do. I also take a good probiotics. After going thru this surgery the good bacteria in your gut is probably none existent.

I go out to eat with no problems. No worrying about making it to the bathroom. I thought that would be an issue but it hasn't with me. Depending on what I eat will depend on how thick or watery my stool is.

Also, no one informed me that this surgery would probably throw my menstrual cycle off. I had my period the week before surgery which I was glad about because I didn't want to be on my period at the same time, but I started my period a few days after surgery so be sure and bring proper underwear and pads just in case. The hospital pads aren't comfortable.

The most painful part for me was they pump you full of CO2 to do the surgery. Well that gas has to go somewhere and if your bowels aren't working you can't get it out. They tell you to walk, walk, walk. Well walking never got it out for me it made it go further up under my ribcage and shoulder. VERY painful.

Take advantage of your pain pump.

It's also good to have someone who you know is going to be there the first night and next day. My husband went home after the surgery and the next day when I was coming out from anesthesia I was confused. Didn't know what day or time it was.

If you have any questions please ask.
Control is an illusion. The only control we have is our response to people and situations. - Kim Martin


jazzygirl
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 4/1/2008 9:23 PM (GMT -6)   
Hello 2much2bear,

I'm new to this site also, and reading your post reminds me of what my surgeon has told me, a 50% chance on this that it will work, I have colonic inertia along with sigmoid colon stenosis, I am 38...I have been this way since my gallbladder surgery on 9/5/06. The surgeon who did the gallbladder removal lapro, said he accidentally spilled the contents of my gallbladder which was poisoned with thick black tarry bile into my abdomen mad , now before this surgery, my bowels worked fine, but since the surgery, nothing, it was literally overnight that my bowels stopped working!!

I also got a copy of the operating room minutes to read what else happened, I read also that he removed part of my liver, which he never told me!! mad It caused a severe bleed, I should get a lawyer, but I don't know how, etc...anyways, I am in the same boat, my surgery is scheduled for May 6th, and I'm a nervous wreck!!! sad

I believe in my heart that surgeon caused this to me, and no, this surgeon doing my coloectomy is not the same surgeon who did my gb surgery, thank God!

I would like some input from some people on here as to what they think, etc...I am now totally disabled because of this, I had to give up a management position because I couldn't stand the pain, etc...all I can handle is ice cream, solid foods kill me almost....

Good luck to you and anybody else out there who is going through this also. I look forward to getting some responses to my post, maybe some good advice, etc... :-)

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 4/3/2008 12:33 PM (GMT -6)   

Thank you all so much for your input and comments.  It sounds like some of you have other awful things going on too, as well as what happened to jazzygirl - that is unbelievable - can u get compensation?

I do hope the surgery went well for you HisWill.

MY (short!) STORY: Yes i also had the STARR operation 18 months ago, as well as pelvic floor repair 4 years ago.  Starr is for rectocele but also for mucosal prolapse.  pelvic floor op was because of the rectocele and also a cystocele, which is when the bladder is also pushing through the wall of the vagina.  None of these helped me as i had ODS which is obstructive defaecation syndrome.  I was then diagnosed in late 2006 (after going from pillar to post) at another hospital with slow transit constipation, and told i was too young to have a subtotal colectomy(??) i was 44. At that time, i was told to start taking laxatives. i started taking 2 senna twice per day, as well as glycerin suppositories (i used to spend 3 hours a day to empty).

However after going back to my local surgeon, in June 2007 i had a sigmoid resection as an MRI scan found it to be twisted in two places and going down into the sac of Douglas (the area between the vagina and rectum).  It was found to also be unusally long, and, because of my history, my surgeon thought it wouldnt hurt to remove that part of sigmoid (about 12-15 inches).  However, the surgery did cure the obstruction amazingly, but my bowel basically just stopped working.  he doesnt know why. 

well since then i was referred to yet another hospital (it takes months over here on NHS)- the so called 'best' in London (why wasnt i referred there before??), and test show 78% markers spread throughout colon.  thats it.  i now have to take up to 25 senna tablets a day to have any kind of bowel movement, but gut still doesnt feel like normal at all.  sorry its a long story though, but it may help someone maybe. 

i see my old surgeon who did the sigmoid surgery next week for his opinion, and whether a sub-total would be better option for me, as i am scared of being incontinent.  the reason i might be incontinent is that i was told my rectum is more narrow since the STARR, plus i had the sigmoid resection, plus for some weird reason, i get urgency when i actually DO need the loo, albeit there isnt much there always.  so its all WEIRD confused I  have to time myself from the time i take the laxatives and make sure i am at home for the loo.  plus it doesnt all come at once, then again i have days when nothing happens.  thanks for reading...x

 


 


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 4/5/2008 7:33 AM (GMT -6)   
tongue  Hello There!  2much2bear
 
In September 2005, I had several surgeries for Slow Transit Colon in which I suffered for 15 years.  I meet with numerous specialists and I was told to take mirilax and live with my problem.  My husband, who knew what I was going through was upset and discussed my problem with a coworker of his who had colon cancer.  His surgeon knew my problem and agreed to meet with my husband and I  and do a case history of constipation.  After three months of a series of medical testing such as colonscopy, sitz marker test, barium enemas, an upper GI, sigmoidoscopy, everything pointed to Slow Transit Colon.  He too said I could live with my problems or have a Subtotal Colectomy with the possibility of an ostomy (either temp or permanent).  Since he was doing a laparoscopic Subtotal Colectomy, Ileal Rectoscopy, and Rectopexy, a urologist would be involved as well.  After discussing the pros and cons with my husband and daughter, I had the operation which lasted 9 1/2 hours w/complications and a temporary ostomy.
Then the real complications began after 12 am, I was bleeding internally where they did not know and I received one blood transfusion after another which I was not in favor of but I had no choice or I would have died.  Seven hours later, you could not even see my eyes.  I was so swollen my surgeon ordered ER Surgery Stat and another 9 1/2 hours of surgery with the possibility of not surviving.  The outcome did not look good where they pulled my daughter out of school and my parents came to the hospital after an hour drive.  I remember leaving my room and there was a bright light as they transported me down the hall and I cried and said why me and said to God "it is not my time".  As they wisped me through the OR doors where my surgeon was waiting patiently. They needed more blood and it had not been processed yet which delayed my surgery and the risks got greater.  Then all of a sudden I woke up in recovery where my daughter stood by my side with tears in her eyes and said you did it.  For five days, I could not get out of bed nor did I stay awake long enough to see my stomach, the ostomy bad, all of the IV's, etc.  Finally, the nurse said you have to get up and walk around and we need to change your bandage on your stomach, which I had no idea until it was removed.  I looked like Frankenstein. 
 
After experiencing all the obstacles, it made me only stronger to get the temporary ostomy reversed if everything healed well.  But I had to remember, that everyone's body heals differently and reacts differently and no two outcomes are ever the same.  It is up to the person actually experiencing the situation and has an effect on the final outcome.  A full month passed and my weight dropped drastically.  As soon as I ate something, it went into the ostomy bag.  And having an ostomy bag to me personally requires a great deal of patience and excellent hygiene.  It got to the point on Halloween, I could not get out of bed, I was so weak.  In which I was scheduled that same afternoon for insertion of a TPN for feeding of good fat to gain weight and build my strength up so by the 12th week, I could have my reversal.  Luckly, I received a temporary disability from my employer and I was able take better care of myself, rest, and I also had excellent support from my family and friends.  Believe me these Ostomy Forums got me through a great deal by learning that I was not alone and the people in this Ostomy Forum are geniune.  It is an on-line support group from people all over the world that are experiencing what we are going through.  We don't try to scare one another but the experience alone can upset anyone in our position.  However, ONE MUST BE OPTIMISTIC and BE A BELIEVER.   Since everything was working properly and I was gaining weight to have the reversal, five days before Christmas my reversal took place.  The reversal surgery lasted seven hours and I had two horrible days following the surgery meaning, I could not have a bowel movement.  Which was another cause for concern, because everything I was eating was backing up.  One evening, my nurse came in to check on me and found me on the bathroom floor curled up in the fetal position covered in brown bile and vomit.  My surgone was called in.  If I did not have a bowel movement by the next day, he would have no choice but to put a NG Tube or reverse the ostomy.  The NG Tube was not successful and my surgeon was going to surgery again which literally scared the poop out of me.  I should have been chewing gum since my reversal because I later learned that chewing gum creates gas.   The following afternoon which was Christmas Eve and my surgeon released me.    
 
Here I am two years later, at first, I lost all the weight I gained from the TPN, but now I am starting to gain weight the right way.  At times, I feel weak because it depends on what I eat.  I love Skippy Creamy Peanut Butter and I Can't Believe It Is Not Butter Light, Mashed Potatoes and Gravy, Sicilian Shrimp from Olive Garden, Seafood, Pizza, Turkey, no red meats or chicken, and drink lots of water.  Sometimes as soon as I finish eating my stomach sounds like it is going to explode and bamm it is like diarrhea.  But it is far better than being constipated 24/7.  However, there are alot of foods that I can't eat because I get constipated like refried beans.  I love Bean Burritos with lots of mild sauce and gauc.  But again, life is much better than it was 17 years ago.  I won't give up what I love to eat if it is going to give me diarrhea, I just make sure I know where the restrooms are just in case.
 
As a result, it was all worth it.  And I sincerely hope that your future surgeries are successful and painfree in which you can begin a whole new life without any bowel problems ever again.  God Bless!
 

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 4/5/2008 8:31 AM (GMT -6)   
Hi Angel baby

thanks so much for the comments - its is good to hear everyone's stories. Can't believe u went through so much grief and nearly died! :( however, its fantastic you are fine now and living life to the full. you all sound so lovely on this forum.
karen xx
 


NorwegianForestCat
New Member


Date Joined May 2008
Total Posts : 12
   Posted 5/21/2008 7:52 PM (GMT -6)   
Greetings 2much2bear:
 
This is my first post and since I really was not sure how to just say hello to everyone and get started in some formal way, I decided to reply to you.  I pray I can be of any assistance.
 
I too have suffered with chronic constipation or CI for at least 30 years or so.  After seeing doctor after doctor (including supposedly the best GI docs) who did not take me seriously that this had ruined (virtualy stopped) my life  eyes  , I decided to go to Mayo Clinic in MN.  Maybe I looked too healthy to them (5'9" and about 125 lbs and no other health problems). Although it took a few more visits than I would have wanted, after all tests were done and nothing much was really found except for CI (some new and improved version of the sitz marker test), I decided to go with the subtotal colectomy option.  I had my surgery on 05/07/2008 and am still in the recovery phase.  There was one major complication and that was that I lost a lot of blood.  I had my transfusions, was released about a week later, and I must say, despite a lot of bms (which are steadily normalizing and getting less painful), it is the best thing that I (and the surgeon) ever did for myself.  There was no mention of possibly being incontinent and nothing down in that area has changed.  I am also experiencing quite a bit of tiredness but believe that this too shall pass. . . .
 
I was so desperate to be free of being full of it all the time and in so much misery, even a bag where I could at least have more control of getting it out, would have been an acceptable option.  Thanks be to God though that I didn't not have to have one.  Please do not fear my friend and go forward in faith.  I am believing that you will be pleased with your surgery and am praying that all will go well for you.
 
Regards,
NFC (I am also the mom to a few special needs cats who need me to be well to care for them)    

Post Edited (NorwegianForestCat) : 5/21/2008 7:56:20 PM (GMT-6)


Mom2sophia
Regular Member


Date Joined Aug 2007
Total Posts : 262
   Posted 5/22/2008 6:55 AM (GMT -6)   
NFC....I noticed your post and just had to say that I once owned a norweigien forest cat...he was my baby!!! What wonderful cats, and beautiful.  Sadly, we had to put him down...he had kidney failure.  I miss him so much!!!  Glad to hear you are doing well with your recovery.

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/22/2008 7:27 AM (GMT -6)   
Hi Norwegianforestcat
 
Thanks so much for the encouragement.  Can i ask you how old you are and whether you took lots of laxatives to go to the loo before surgery, and if so, how much.  I am glad it worked for you.  my symptoms have been diverse and chronic.(as per below)
 
All i get is pessimism from my consultants, and no hope at all.  I was told by a london professor a couple of months ago that i could be incontinent if i had the total colectomy.  i would have the subtotal in a beat, but he won't do it, as he said in  his vast experience, it doesnt work for people who have slow transit constipation.  though, i know my local surgeon would do it if i asked him to, as he has always been helpful, but he is now taking the side of the so called 'expert'' who wont do a subtotal on me, and is not offering me anything but referring me to yet another 'expert' at another london hospital. 
 
Its like you have to just make up your mind to have an operation and go for it, but i dont want to end up worse e.g. that my bowel decides to complete stop working altogether.  at the moment i take around 25 - 30 senna tablets a day, and this produces some kind of movement daily, though not always efficient and i can still be confused bloated and uncomfortable, plus not to mention the foul wind - awful! skull    Its time like these you wish you had a crystal ball to see the future...by the way what is a norwegian forest cat?
 
kind regards
 
karenx
Karen xx 
 
Previous diagnosis/surgery:
 
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome (ODS); Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate worsening STC;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once) or be in discomfort. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag'. :(


NorwegianForestCat
New Member


Date Joined May 2008
Total Posts : 12
   Posted 5/22/2008 4:28 PM (GMT -6)   
Mom2sophia:
My NFC's name is Paco and he is 12. He is also my baby even though he is my biggest cat (loves to eat just about anything and will clean up the other kitties food when they are done if I let him).  I usually pick up the food then so Paco won't explode.  I also had to put down my old white kitty (verrrry difficult) who was the top cat of the house until he went to cat heaven. 
 
2much2bear:
I hope this isn't too long. I turned 50 in April.  Originally I had attempted to schedule my STC for my birthday thinking that it would make a great Bday present but the scheduling just did not work out that way.  I reasoned that if the surgury didn't work, I could not go on the way I was and was willing to take the risk.  Even death would have been preferred compared to living in one more day of intestinal hell, not that I would take my own life since I know it is God that gave it to me and it's also up to Him when my time is up. 
 
I took laxatives virtually every day: Miralax 2 to 3 times per day, stool softeners sporadically, and dulcolax a couple of times per week. I also did enemas on the mornings before work (maybe 2 or 3 days per week) when I realized that I was starting out the day in a really bad way and could not risk the uncertain workings of a laxative the night before. Senna and other laxatives with senna bothered me in the sense that they tended to dry me out; thus they worked to begin with, but somehow my body got more and more used to them, and they stopped working (also because they contributed to my dehydration).  I did a lot with my diet also to keep from being totally plugged up including the elimination of all dairy and wheat products and tons of water.  Still when I had bowel movements, with all the miralax, they were sparse, loose, and never had enough substance.  I had to have at least one morning per week where I planned on being home for when I took a few dulcolax the night before to be ready for a weeks or two worth of you know what to come forth in a very unseemingly manner (all of the symptoms you mentioned plus more).  It was so frustrating !!!  Without using anything, if I did have any bm, they were hard as a rock and I would be in total misery.  Most all of the GIs, doctors, alternative docs, etc., thought that I should be able to have a reasonable quality of life with just some drugs and controlled diet.  None of these things worked. They just kept me from exploding or having to go to the ER with an obstruction.  
 
I was told my more than one doctor that if I had the surgery that I could more than likely have the opposite problem with diarrhea; however, that has not been the case so far. They said that I might then have to have another surgery to get a pouch or bag. Presently, two weeks after the surgery, my bms are loose and frequent but I am able to make it to the water closet on time and I would have it this any day versus bs (before surgery).  With each subsequent day, my body is adjusting.  Right now I am not supposed to have any raw veges and such so I can't wait until I am able to eat almost anything  again. Maybe my life won't be totally "normal" (whatever that is) but it has already improved and I'm thrilled. I'm still off work until mid June.
 
If you can at all afford it (both in terms of money and time), I would encourage you to go (even if it meant travelling far away) and get some more opinions.  I did not pay enough attention to you bladder issues before; however, I believe it would be worth while for you to keep persevering.  The great thing about Mayo it that they did their own tests and formed their own opinions based on those tests along with the information I gave them (my own symptoms). They did not prejudge my condition based on what any other doctor said.  It was like starting afresh.  I hope you would be able to this.  A while ago before I started my quest to travel for a new doctor, I remembering doing some internet searches and coming across some surgeons in the UK who were totally for doing the STColectomy for CI.  I just could not afford to travel to the UK and I don't think my insurance would have covered my expenses there. I pray you will keep looking and find someone(s). 
 
A NFC is a breed of cat that has a rather large frame, usually has tiger markings like a tiger kitty, and has medium long hair.  If you google "norwegian forest cat" images, you will get a good idea.  They are a very gentle and loving breed.  I got mine at the humane society when he was a very small kitten.  
 

Proverbs 16:3 (Amplified Bible)

Roll your works upon the Lord [commit and trust them wholly to Him; He will cause your thoughts to become agreeable to His will, and] so shall your plans be established and succeed.
 
Godspeed . . . .
NFC
   
 

Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 5/22/2008 7:49 PM (GMT -6)   
NFC,
You are so me!  I was shaking my head just reading your post.  I'm a little older (52) but have had this problem my whole life, and like you, I set aside a big stretch of time every few days to clean out.  I usually take senna at lunchtime, and then have time to get home from work and sit on the pot all night.
 
I do have a question though....did you have total or subtotal colectomy?  You said sub, just wondering how much of your colon was left.  My doctor said sub most likely wouldn't do the job, but I really don't want to start having the opposite problems!
 
I am currently having biofeedback treatments, as I have pelvic floor dysfunction.  I also have a large rectocele, which my Dr. wants to repair before I have TC.  I'm glad to hear you're doing so well; the biggest fear I have is having constant diarrhea, which is really funny just to think about!  The biofeedback hasn't really helped, but I'm giving it a few more treatments.   I absolutely never, without laxatives, have a BM, and haven't for my whole adult life.  Miralax never worked for me, and neither did zelnorm.  I have such mixed feeling about the surgery, but can't wait to get it over with.  I probably won't have it until the first of the year...I want to have the STARR procedure later this summer, and then I have my first grandbaby due the beginning of December, so I want to wait until after that to have the surgery.
 
I have a Maine Coon, which is a cousin of the NFC, I believe.  I adopted my little (big) Sammie last year; he's 9 or 10 years old, but what a sweetie.  We lost 2 litttle dachshunds over the last couple years, and when a friend at work who does cat rescue told me about Sammie, I said I'd give him a try. I wasn't ready for another pup yet, and thought I'd see how I liked a cat.   Now you couldn't get him from me for anything!  My husband never really liked cats, but he loves him too....such a gentle kitty!
 
I am so grateful to everyone on this board. For years I thought I was the only one with this problem, and so many doctors told me to eat more fiber, drink more water and exercise and I'd be fine...well, I do all of the above and nothing happens.  Actually the more fiber I eat, the worse I feel. 
 
Anyway, thanks to everyone for sharing!!
 
Janie
 
 
 
 

Post Edited (Janiepain) : 5/22/2008 7:59:51 PM (GMT-6)


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/23/2008 4:33 AM (GMT -6)   
Thanks Norwegianforest

No the reply wasnt too long - its nice to get a full picture. I think Miralax is something like Movical in the UK. its an osmotic laxative - which really really dont agree with me - all it does is give me a huge bloated gut and pain and trapped wind. strange that our symptoms are so differnet. senna is the only thing that keeps me loose - i rarely have rocks if ever - only if dont take the lax. Miralax is also like a more tame version of Picolax which they give you before bowel surgery sometimes - that even stopped working on me as didnt stimulate the gut enough. I have not tried ducolax - it is similar isnt it.

well thanks for the response. Glad it worked for you. and yes janie, fibre does make it worse for me too...

best wishes
karen x
Karen xx 
 
Previous diagnosis/surgery:
 
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome (ODS); Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate worsening STC;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once) or be in discomfort. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag'. :(


NorwegianForestCat
New Member


Date Joined May 2008
Total Posts : 12
   Posted 5/23/2008 5:52 PM (GMT -6)   
Hello everyone,
 
I hope you won't mind if I combine my answers. I have had a very tired day today (don't remember if I mentioned that I don't quite have my energy back yet).  Somehow I thought I would not be so exhausted since my surgery was done laparsp.  All I did of any substance was get some groceries and I am worn out.  I would sleep all day if I thought I could get away with it, however; I don't think that would be the way to build back my strength and besides there are too many things that need to get done (even when I am off work). 
 
The Miralax that I took never did work that great.  It also bloated me and what I had to do was take in on an empty stomach at least 1/2 to 1 hour before I ate in order for it do anything.  The only reason that I didn't take stronger things throughout the work week because when lax. worked, they worked every 5 or 10 minutes sometimes for hours sporadically and that was not a good thing to have happening at work !!! So I waited for the weekends to have my "fun".  How sad is that? I was also not able to take fiber. No matter how much water I drank, it felt like it turned things into cement down there. 
 
Although I am having some degree  D., at least I am having enough warning to get to the loo.  Once I resume eating raw foods though, I'm not sure if this will change.  It is also funny to me to be having this.  Would the doctors consider doing a rectocele and STC simultaneously or would this just be too much?  I had the most incontinence when I was severely constipated.
 
I believe the surgeon told me that he took all of my large intestine out and hooked up my small intestine directly to rectum (subtotal colectomy with ileorectostomy was what written on dismissal summary).  I will call next week to find out if any of the large was left and let you know when I find out. 
 
Later. . . . .
NFC

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/26/2008 8:12 AM (GMT -6)   
Hi NFC

Thanks for taking time out for replying - hope your energy levels improve, i am sure they will - the body needs to rest as been through so much. I am amazed about the fact that they took your whole large bowel out and yet still call it a subtotal colectomy!! no wonder i am confused and my surgeon is also confusing me - makes you wonder why they say 'total' and 'sub' total!! does my head in. i will look up what a ileorectostomy is as dont know what that is. anyway it will be good to hear how much, if any, bowel was left intact.

bye for now.
karen x
Karen xx 
 
Previous diagnosis/surgery:
 
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome (ODS); Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate worsening STC;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once) or be in discomfort. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag'. :(


NorwegianForestCat
New Member


Date Joined May 2008
Total Posts : 12
   Posted 5/27/2008 7:32 PM (GMT -6)   
Hello 2much2bear:
 
I found out today regarding how of my large intestine (if any) was left after my subtotoal colectomy --- NONE.  Only the rectum was left intact and it was attached directly to my small intestine.  Mayo Clinic's definition (or my surgeon's) of a total colectomy is when the rectum is also removed.  In my case it was not.  As I have read a bit more about the STARR procedure and the other problems you have mentioned, I have somewhat more of an understanding (I'm sure not enough) of your concerns.  Again, with God's help, please pray and search for a place with a GI division who has a good reputation and would be willing do perform a full workup on you if at all possible.  I am believing for you, karen x, that there is an answer for you.  Luke 1:37 (NKJ) For with God, nothing will be impossible.  God has left you here for a reason.
 
Thank you for inspiring me to call and find this out regarding how much was left.  It was not clear on my discharge summary and even though they told me a few days after surgery, I was too out of it too remember.  It was also good for me to know.   
 
You are on my heart and mind,
NFC      

God is our refuge and strength, a very
present help in trouble. Psalm 46:1 
 
2008  Subtotal colectomy w/ ileorectosomy


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 5/27/2008 9:33 PM (GMT -6)   
Karenx,
Just wondering how your recovery from the STARR procedure was?  I'm currently having biofeedback treatments for pelvic floor dysfunction, but I also have a large rectocele and my surgeon recommends I have the STARR before a colectomy.  Was it very painful?  How long were you in the hospital, and how long were you off work?  Also, did it work at all? eyes Thank you for your response!
 
NFC, I'm glad you're doing as well as you are.  It seems you're only a few weeks out of surgery, so I'm sure it's very normal that you're still very tired.  I hope you continue to build up your strength, and thank you again for your reports.  Please keep us posted....for those of us waiting for the surgery, all this information is gold!
 
Janie

2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/28/2008 3:22 AM (GMT -6)   
Hey NFC
 
Thanks for letting me know - amazing!  Also thanks for your concern and belief - it seems there are quite a lot of folk on here who have faith in God.  I used to.
 
Well, i have actually been here and there to several hospitals over london for the last 10 years, and the best so far was the last where they did a complete GI study on me, several different tests, and the transit study again confirming slow transit - 78% of markers still left scattered throughout the colon, (which was made worse by having a sigmoid colectomy last year).  its a long long story so wont go there, but my history is below. 
 
so i have come to the end of the road really, and have to make a decision, but i really really could not cope with a bag - i cant see myself with one, and, although loads of folk have them, i absolutely could not consider it.  it would be just my luck that i was the one to be incontinent, although lots of you are ok.  it seems they are just leaving me with making the choice and offering no hope or support at all... eyes  
 
bye for now - karen x
 
Previous diagnosis/surgery:
 
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome (ODS); Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate worsening STC;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once) or be in discomfort. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


2much2bear
Veteran Member


Date Joined Mar 2008
Total Posts : 624
   Posted 5/28/2008 4:19 AM (GMT -6)   
Hi Janie

Hows the biofeedback going?? I dont know the symptoms of pelvic floor dysfunction i'm afraid.

It is difficult to say whether the STARR was a success for me, as i had lots of different things going on. However, I had STARR (in march 2006) for obstructed defaecation syndrome.

For years and years, my MAIN symptom was, when i had the feeling i wanted to move my bowels, i couldnt act upon it, and it came to the point after years of doing goodness knows what, that i ended up using boxes and boxes of glycerin suppositores and my using my finger and spending at least 3 hours sitting on the loo daily trying to empty. At that time my bowel seemed to be working, e.g. pushing its contents along, but because of straining and such i ended up with (after really pushing for a diagnosis, as no one believed me!) what is called a mucosal rectal prolapse - the lining of the rectum had become floppy, and blocking it. At that time, (after the STARR) i was also diagnosed with slow transit constipation, even though i was 'going' once or twice a day!!!

So, to answer your question of did it work - yes and no. For the first time in over 10 years, i was sort of able to act on the urge to empty my bowel, resulting in just a little bit though - that lasted 1 week. A year later, and after more pushing, i had an MRI scan, which showed a section of my sigmoid colon was twisted and stuck in the space between my rectum and vagina ( a space which is called Pouch of Douglas). This was exciting news, as i thought i was going mad, and my helpful surgeon removed that portion resulting in ------ no more obstruction. However, that surgery caused my bowel to totally pack up unfortunately....

So will it work for you? Yes - but depends on your symptoms and why you are having it. I had a rectocele, and i still do, yet again. A lot of women do, but if you are having rectal problems it is best to go through all avenues. It is hard to describe the procedure, so i recommend you google it. It basicaly pulls in the excess and cuts and staples at the same time. If you have bowel and pelvic floor probs it cant do no harm at all, just a better rectal function.

As for pain etc, it should be sore for a week or two, but i found it more painful, as, of course, i still had obstruction, and still needed to use suppositories!! I was in hospital for just 1 or 2 nights - i cant remember - its a very clean and swift procedure. I didnt go back to work for about a month.

So basically, it is no where as serious as having a TC at all! I have heard it is very successful (if you dont have anything else going on!). Though again, it depends on your sypmtoms, and of course, your bowel is slow like mine of course.

Please do let me know when you are having it and how it goes. hope that helps..

karen x
 
Previous diagnosis/surgery:
 
2003: Rectocele/cystocele - Pelvic floor repair surgery;
2006: Mucosal prolapse/Obstructive Defaecation Syndrome (ODS); Slow Transit Constipation - STARR surgery;
2007: Partial volvulus (cause of ODS?) - Sigmoid resection. Result: immediate worsening STC;
2008: Now contemplating colectomy as I need to take up to 30 senna tablets daily for some kind of bowel movement (albeit not 'normal' or all at once) or be in discomfort. 
 
Scared to have TC as told I could become incontinent - can't get my head around the fact I might require a 'bag' :(


Janiepain
Veteran Member


Date Joined Jan 2007
Total Posts : 662
   Posted 5/28/2008 9:05 PM (GMT -6)   
Karen,
Thanks so much for the info.  Biofeedback is, well...I'm not sure.  Nothing has changed, except I'm sticking this little probe in my rear end every evening and trying to hold my pelvic muscles in.  The problem is, apparently when I try to push, I'm actually holding back.  Biofeedback is supposed to help that.  I'm eating more fiber, which is actually making me feel worse, as well as giving me terrible gas!  I'm also keeping a record of water I drink daily and my diet.  It's only been 2 weeks; I have another appt. next week, but I really haven't seen any change at all.  I'm going to give this a few more weeks, and then have the STARR procedure; hopefully in August.  If that works, I'd be very very happy, but I'm not going to count on it.  I think the STARR procedure will help once the food starts moving through, but like you said, with slow transit, I'm not counting on a miracle.  My surgeon just said it was best to try everything else first, and I'd most likely need this surgery even after a TC.  I often have that same feeling you had; even after using laxatives, I still need to insert suppositories to get things going. 
 
The things that scares me most about the TC is not having control afterwards.  I work in an office where the bathroom isn't close at all.  It's also just a two stall bathroom, and often it's not empty.  I just am so afraid of having an accident there.  We're also pretty social, and I worry about not being able to go out to dinner, etc.  At least now I'm ok for a few days, and then I start feeling terrible until I take a laxative.  But when I take the senna, I'm housebound for the entire evening.  I just don't want to be housebound for months. 
 
One thing I haven't seen mentioned at all...can you drink alcohol at all after a TC?  I'm not a big drinker at all, but we do go out for happy hour with friends every couple weeks ; I generally have a glass or two of wine.  Will I still be able to do this, or does that go right through you?
 
So many questions!  I really am just scared, I think.
 
Janie
 
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