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TickledPinkTwice
Regular Member


Date Joined Mar 2011
Total Posts : 242
   Posted 3/26/2011 10:57 AM (GMT -6)   
Hello everyone. My name is Mary and I am 26 years old. I have two year old twin daughters who I had via C-section. I was not sure where to post but I have been having some issues. For at least the past 10 years (all I can remember) , I have had issues with constipation. I will go once a week,if and ONLY if I take a laxative. I have to change up the laxatives or they won't work. Right now,I have to take 8 pills of Senekot with a stool softener. So of course the stool is always watery, I have no idea what it would be without laxative because I can never have a bowel movement without it. My belly does make noises but I don't ever have an urge to eliminate. I always have a lot of gas but sometimes it is hard to pass. I have had an Endoscopy and Colonoscopy. The only issue was that I had polyps. They tried to tell me I have IBS,but I refuse to take that as an answer. Zelnorm didn't work,now he has tried Amitiza 24MCG. Not a difference. Everyone says try Miralax,I have and I was taking cupfuls a few times per day with no help. The new issue is my severe bloating. I look like I am pregnant with my daughters again. It is so uncomfortable. I just can not live like this anymore. I haven't gained a pound but I have gained two pant sizes. He wanted to try medicine first but since it isn't working,I know he will want to try something else. I don't know what it will be but he did mention to me that he believes it is Colonic Inertia, in which case he would want to go in and remove part of my colon. I am scared to death about so much. I truly believe that this is going to happen so I am trying to prepare myself mentally. I have a few questions.
1. Was your open or a laparoscopy?
2. Do you have to have a colostomy bag the rest of your life?
3. How long were you in the hospital?( I don't know how I could leave my daughters confused )
4. Does your diet have to change?
 
I know this was long,but anyone who answers I truly appreciate it. I just feel defective.

Post Edited (TickledPinkTwice) : 3/26/2011 11:05:11 AM (GMT-6)


TickledPinkTwice
Regular Member


Date Joined Mar 2011
Total Posts : 242
   Posted 3/26/2011 11:02 AM (GMT -6)   
Also, did you gain or lose weight from the surgery?

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2011 12:02 PM (GMT -6)   
hi Mary and welcome!

i'm sorry to hear about your struggles. CI is def not a walk in the park. i've also struggled with CI for 16 yrs till i had my colon removed. it was the best thing i did. i'm only sorry i didn't do it sooner (just couldn't find a dr to seriously listen to me).

if your dr thinks it's CI and nothing works anymore, then they should do a full work up on you and do all the tests needed, which means:

barium enema.
anorectal manometry.
transit study (sitz marker test).
defecography.
tests to evaluate the motility of you stomach and small bowels (don't remember the names of these tests)

after you had all these tests and get a full evaluation, your drs and you will be able to make a decision.

it does sound like your colon lost it's motility long ago and better be taken out. generally, if your pelvic functions right, meaning you have no problems expeling the stools once it got to the rectum, then a total colectomy with ileo-rectal anstomosis (removing the colon and attaching the small intestine to the rectum) should work good and you'll need no bag.

although my surgery wasn't successful and i ended up with a bag, most of those who had the surgery for CI had much better outcome and only a small % ends up with a bag. you can google "tatal colectomy part 3" (1 and 2 are hard to find) - you'll find dozens of women who went through the surgery and most of them had very good outcomes. those total colectomy threads will provide you with a lot of info about CI, the surgery and it's outcome.

to your questions:

1. my surgery was done laparoscopically.

2. i do, but as i said, most with CI don't end up with a bag.

3. hospital stay is usually about 1 week. i was 18 days due to complications.

4. usually after taking the colon out, you are told to eat low residue/low fiber diet for the first 2 weeks. but from what i've learned from most who had the surgery (and me), it's best to keep the low residue for few mons and introduce more foods slowly. everyone is different, some can eat everythng they want while after surgery, some have trouble with certain foods. personally, i still can't eat lots of foods and have to stick to the low residue for life.

5. i lost about 10 lbs from this surgery, but gained it back within 2 mons.

so anyway, to get a better picture about this surgery i really suggest you check out those total colectomy threads, and of course if you have questions, always feel free to ask.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

TickledPinkTwice
Regular Member


Date Joined Mar 2011
Total Posts : 242
   Posted 3/26/2011 12:15 PM (GMT -6)   
That was extremely helpful, thank you so much. All this testing is just going to wear me out but I have to feel better. Another question,if you don't mind, I have a lot of people tell me it sounds like Celiac Disease but the research I have done doesn't seem to fit. Did you have this issue as well?

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2011 12:24 PM (GMT -6)   
actually, i was never tested for celiac.. so i don't know. maybe i should have been..??
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2011 12:28 PM (GMT -6)   
but in any case, my main problem was CI. what i know is that celiac disease doen't include severe constipation, so i don't think it has anything to do with one another. whether i have celiac in addition, i'll have to ask to test it. and i guess it wouldn't hurt you have that test too.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 3/26/2011 12:40 PM (GMT -6)   
Hi Mary, glad you found HealingWell! This forum is so so so helpful.

I'm not very familiar with colonic inertia but it sounds just awful. I had ulcerative colitis, which is way different, but it's the same surgery (removal of the colon).

1. Was your open or a laparoscopy? - I had laparoscopic surgery. Most doctors will do it laparoscopically, but most will also open you up if part way through the surgery they find that the circumstances require it or it would be safer to do so.

2. Do you have to have a colostomy bag the rest of your life? - You don't have it, depending on what surgery you have. You can get a permanent ostomy (one surgery) or you can get a j-pouch (no more bag, but two or three surgeries). The decision is yours, obviously going through more surgeries means being away from your little ones a bit more, but at your young age I wouldn't want to have an ostomy for the rest of my life (I'm 18 and I'm getting a j-pouch). Not being too familiar with CI I can't vouch for the success rate of the j-pouch for that disease, but from the sounds of Hodaya's post above it sounds like you have a good shot at a great outcome!

3. How long were you in the hospital? - I'm having a three step j-pouch, and I've only had the first step so far. I was in the hospital for just four days!

4. Does your diet have to change? - Well, what's your diet like now? Have you had to make alterations to deal with your CI? For UC I had given up a lot of foods, and now I can actually eat more things and be less strict about my diet than I was before! I think the biggest rules are to just chew your food very thoroughly, being especially careful with fresh veggies and fruits, and to eat a lot of carbs. Generally you can eat whatever you want.

5. Also, did you gain or lose weight from the surgery? - I lost about 7 pounds immediately after surgery because it took a while for my appetite to come back at all. But since then I've been slowly putting it back on. I'm about 3 pounds up from where I was in the hospital (I'm very skinny so I can't really afford to be down on my weight).

Good luck! I really think the surgery would give you some relief. Try not to worry, everything's going to be okay!
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2011 1:03 PM (GMT -6)   
hi elddiReM,

i just wanted to correct you, they don't do j pouches for ppl with CI. the procedure for CI includes removal of the whole colon, but they leave about 20 cm of rectum, maybe a bit more, which means the whole rectum stays and a bit of the sigmoid, so there's no need for a j pouch. the surgery for CI is a one step surgery - removing the colon and attaching the ileum to the rectum and.. that's it. just one step.

the j pouch is created in cases where they can't keep the rectum and the j pouch is meant to replace the rectum. i guess your rectum was diseased and had to be removed, that's why you're going to have the j pouch.

i wish you best of luck with your 2nd step surgery, eddliReM :)))
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 3/26/2011 3:31 PM (GMT -6)   
Oh goodness, sorry! Definitely don't want to give false info! Thanks for correcting me!

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 3/26/2011 3:48 PM (GMT -6)   
Ask the doctor for the sitz marker test. This will determine if you have colonic inertia.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 3/26/2011 4:25 PM (GMT -6)   
no worries elddiReM! and you're so sweet to come and support others!!! that's what counts!!! and you're so young to go through all that you are.... i truly hope everything works best for you!!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

ride-a-bike
Regular Member


Date Joined Oct 2010
Total Posts : 44
   Posted 3/26/2011 6:23 PM (GMT -6)   
Mary,
I understand how you feel. Once you're done with testing and they determine you'll be helped by surgery it's a big step to take. I think they really would look at removing your entire colon, not just part of it. There is no way that I know of that will determine which part of it is not working so it all needs to come out just to be sure. If the motility problem is in your small bowel this surgery will not help you.

My surgery was done laparoscopically and I had an ileo-rectal anastomosis, they connect your small bowel to your rectum. I ended up having another open surgery 2 weeks later as they had twisted the ends of the anastomosis and I ended up with a small bowel obstruction. I ended up in the hospital for five weeks (with 1/2 day at home from my original discharge until re-admit) due to ileus and infected wound. I then had another open surgery 4 months later for what turned out to be adhesions, my small bowel was "plastered to the abdominal wall". I was in for another 2 1/2 weeks and ended up on TPN at home for a month after that. From my original surgery to my discharge 5 weeks later I lost 30 pounds and was out of work 9 months.

Now, things are great! At my last surgery for adhesions she used SepraFilm to minimize adhesion formation and it has seemed to work. I have gained back all my weight (and a little more), eat whatever I want, stool is pretty normal, usually 1-4 times/day depending upon what I eat. The point of all this is that the surgery made a huge difference in my life (for the better) but things can go wrong. On the other hand there are many here who had no complications whatsoever. Even with all I went through I'm still happy with my decision to have the surgery.

TickledPinkTwice
Regular Member


Date Joined Mar 2011
Total Posts : 242
   Posted 3/26/2011 8:14 PM (GMT -6)   
elddiReMsihT said...
Hi Mary, glad you found HealingWell! This forum is so so so helpful.

I'm not very familiar with colonic inertia but it sounds just awful. I had ulcerative colitis, which is way different, but it's the same surgery (removal of the colon).

1. Was your open or a laparoscopy? - I had laparoscopic surgery. Most doctors will do it laparoscopically, but most will also open you up if part way through the surgery they find that the circumstances require it or it would be safer to do so.

2. Do you have to have a colostomy bag the rest of your life? - You don't have it, depending on what surgery you have. You can get a permanent ostomy (one surgery) or you can get a j-pouch (no more bag, but two or three surgeries). The decision is yours, obviously going through more surgeries means being away from your little ones a bit more, but at your young age I wouldn't want to have an ostomy for the rest of my life (I'm 18 and I'm getting a j-pouch). Not being too familiar with CI I can't vouch for the success rate of the j-pouch for that disease, but from the sounds of Hodaya's post above it sounds like you have a good shot at a great outcome!

3. How long were you in the hospital? - I'm having a three step j-pouch, and I've only had the first step so far. I was in the hospital for just four days!

4. Does your diet have to change? - Well, what's your diet like now? Have you had to make alterations to deal with your CI? For UC I had given up a lot of foods, and now I can actually eat more things and be less strict about my diet than I was before! I think the biggest rules are to just chew your food very thoroughly, being especially careful with fresh veggies and fruits, and to eat a lot of carbs. Generally you can eat whatever you want.

5. Also, did you gain or lose weight from the surgery? - I lost about 7 pounds immediately after surgery because it took a while for my appetite to come back at all. But since then I've been slowly putting it back on. I'm about 3 pounds up from where I was in the hospital (I'm very skinny so I can't really afford to be down on my weight).

Good luck! I really think the surgery would give you some relief. Try not to worry, everything's going to be okay!
 
 
 
 
 
 
 
 
 
Thank you for your help!

TickledPinkTwice
Regular Member


Date Joined Mar 2011
Total Posts : 242
   Posted 3/26/2011 8:15 PM (GMT -6)   
 
I could deal with that!
2b ColonFree said...
hi elddiReM,

i just wanted to correct you, they don't do j pouches for ppl with CI. the procedure for CI includes removal of the whole colon, but they leave about 20 cm of rectum, maybe a bit more, which means the whole rectum stays and a bit of the sigmoid, so there's no need for a j pouch. the surgery for CI is a one step surgery - removing the colon and attaching the ileum to the rectum and.. that's it. just one step.

the j pouch is created in cases where they can't keep the rectum and the j pouch is meant to replace the rectum. i guess your rectum was diseased and had to be removed, that's why you're going to have the j pouch.

i wish you best of luck with your 2nd step surgery, eddliReM :)))

TickledPinkTwice
Regular Member


Date Joined Mar 2011
Total Posts : 242
   Posted 3/26/2011 8:19 PM (GMT -6)   
Oh my goodness, you poor thing. I am so glad things are better for you  now.
ride-a-bike said...
Mary,
I understand how you feel. Once you're done with testing and they determine you'll be helped by surgery it's a big step to take. I think they really would look at removing your entire colon, not just part of it. There is no way that I know of that will determine which part of it is not working so it all needs to come out just to be sure. If the motility problem is in your small bowel this surgery will not help you.

My surgery was done laparoscopically and I had an ileo-rectal anastomosis, they connect your small bowel to your rectum. I ended up having another open surgery 2 weeks later as they had twisted the ends of the anastomosis and I ended up with a small bowel obstruction. I ended up in the hospital for five weeks (with 1/2 day at home from my original discharge until re-admit) due to ileus and infected wound. I then had another open surgery 4 months later for what turned out to be adhesions, my small bowel was "plastered to the abdominal wall". I was in for another 2 1/2 weeks and ended up on TPN at home for a month after that. From my original surgery to my discharge 5 weeks later I lost 30 pounds and was out of work 9 months.

Now, things are great! At my last surgery for adhesions she used SepraFilm to minimize adhesion formation and it has seemed to work. I have gained back all my weight (and a little more), eat whatever I want, stool is pretty normal, usually 1-4 times/day depending upon what I eat. The point of all this is that the surgery made a huge difference in my life (for the better) but things can go wrong. On the other hand there are many here who had no complications whatsoever. Even with all I went through I'm still happy with my decision to have the surgery.
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