PLEASE HELP ME DESPERATE FOR AN ANSWER AND SCARED...

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tummytroubles7
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/9/2010 9:18 PM (GMT -6)   
I am a professional female who is 29 years old and have been struggling for 3 years with stomache problems.  I have been going to gasterentonolosigts 3 in the past 3 years and a colon and rectal dr.  I have had 2 colonosquopies and several tests.  The latest was the sidz marker in which they found most of the sidz markers stayed at the top of my inteestine and the latest dr diagnosed me with chronic inertia because for the past 3 years it has been IBS and I am so constipated that nothing except laxatives works.  I have tried asuppositories, enemas, fiber, a nutritionist, gluten free and dairy free diet, u name it.  The only thing that worked years ago when I was 21 was zelnorm.  I am also in recovery from substance abuse and am on suboxone but such a low dose that the drs feel that alone cant cause it. I am very active and work out but in the past year my weight fluctuates so much and within a day or two of not going to the bathroom i gain 7 lbs.  The next test I was told is through a GI surgeon who will check to see if its the pressure in my rectum and they will sedate me and put a catheter in my anus to see if my rectum is working.  But after that, the dr says they will have to remove my large intestine and I wont have to wear a bag because theres no blockage as thats my biggest fear.  The worst part about all of this is that the only way I can defacate is by taking 23 laxatives my body is now up to and I feel this is abuse and the drs know how many I am on.  It started out being 12 2 years ago, but my body has become so dependdent on them.  And all of this time they havent figured out what it was and meanwhile my body kept getting more and more dependent.  Its so bad that I take them 2 times a week to defecate and I throw up bile and am in horrible pain in the bathroom for hours.  I cant go out twice a week because I have to take them and if I dont lay down, I often throw up and I know my body is tellng me this is not healthy and its rejecting them.  But the other alternative is to not defacate and be in horrible pain for literally weeks on end.  I just want to know if anyones experienved this and if they had their large intenstine removed and what the possible side effects are and if they had to wear a bag or not.  Please help me.

Tara28
Regular Member


Date Joined Apr 2005
Total Posts : 362
   Posted 8/9/2010 9:38 PM (GMT -6)   
I am not familiar with colonic inertia but from what you describe, having a bag will be heaven compared to the hell you go through on a daily basis. It's really not that bad.

I'm sorry you're struggling so much right now. I hope things start looking up for you soon!
33 years old, dx with Crohn's in 1998. Currently on :
Clofazimine 100mg daily,
Rifampin 600mg daily, and Clarithromycin 2 tabs daily
and Cipralex 10mg/day for anxiety.
Hydroxyzine, percocet, Ativan as needed.
5g pharmaceutical grade Omega 3's, 1000IU's Vitamin D3 daily
2 Perianal fistulas, and 1 more suspected. Crohn's only at end of colon, cecum. Remi, Asacol, Salofalk, Imuran, Humira did nada. Built immunity to long-term Cipro use, which also induced panic attacks.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/9/2010 10:30 PM (GMT -6)   
i didnt have what you have, so i cant help with that part, but i can tell you that having a bag is not bad at all!!! Its rather convenient at times, and i promise to you that noone will know unless you lift up your shirt and say, hey hey look at this
and like tara said, wearing a bag will be great compared to what you are going through now, you can go out again!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 8/10/2010 5:11 AM (GMT -6)   
hi tummy and welcome to healingwell! you've found the best place for information and support!

i'm sorry to hear about your struggles. i've also suffered with colonic inertia for 16 years - since the age of 20 to 36 (im now 37). it's a terrible desease that takes over your life totally. i reached to a point where NOTHING worked any more and i couldn't have relief, even the stuff they give you before a colonoscopy to clean your colon didn't help me. i had my colon removed a year ago, they removed all of it except for the rectum and attached my small intestine to the rectum - that's what they usually do for colonic inertia, so there's no need for a bag.

there's a thread here called TOTAL COLECTOMY PART 36, that's where all the girls with colonic inertia are posting. my advice to you is also to read the total colectomy parts, from part 3 (1 and 2 are hard to find) to the current part 36, this way you'll gain the best info and knowlege about this condition and about the surgery and it's outcome. by reading it you'll find that most of the women who had this surgery for CI are doing much better than before the surgery and only a small precentage end up with an ileostomy (i'm one of them).

you are also welcome to join us on the TOTAL COLECTOMY PART 36 and talk to others with the same condition.

as for me, the colectomy didn't solve my constipation problem. it was good for the first 2 months or so, then i started having constipation again and by the time i was 6 months post op, i again couldn't have spotenous bms, even if i ate soft-liquid diet. the reason is b/c my rectum (which is part of the colon) is not working right as well, i have an obstructed defecation problem, and also a slow small intestine. so i started having blockages every so often. i did try laxatives, but they weren't effective at all. so finally, with the advice of my surgeon and couple of more surgeons i consulted with, i decided to go for the bag. i had my ileostomy done on July 8th and i can tell you it's so not the end of the world, and for the first time in 17 years of struggles, pain, being bound to the b/r for so many hours a day with not much results and just not living my life, i can say that i FINALLY feel good, havn't felt this good for such a long time..

i'm very happy i had the colectomy and even more happy i had my ileostomy done and would do it again in a heartbeat if i had to. in all of those years i've suffered i forgot what it's like to be free.. now i'm starting to remember :)

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

Post Edited (2b ColonFree) : 8/10/2010 5:21:09 AM (GMT-6)


snugglesaurus
Regular Member


Date Joined Apr 2010
Total Posts : 206
   Posted 8/10/2010 6:34 AM (GMT -6)   
If they say you won't have to wear a bag that's a better option (in my opinion).

I have suffered from colonic inertia for several years after multiple diagnoses.

Have you tried Miralax yet? That at least moves it somewhat faster for me. I have an outlet problem (pelvic floor dysfunction, rectocele, and high resting pressure) I still have to use enemas (I use them daily), but I've gotten to the point of perfecting it well enough that I do feel relatively OK for a few hours (better than nothing, right?).
Diagnoses: Appendicitis, Terminal Ileitis, Crohn's, Celiac Disease, IBS-C, Chronic Constipation, Colonic Inertia, Rectocele, Anismus
Tests: 2 Colonoscopies, 2 CT scans, Sitzmark Test, Anorectal Manometry, Food Allergies, Thyroidism, Pudental Nerve Study, Defacogram, SMART Pill, Electromyogram, Celiac Panel, Small Bowel Study, Gastric Emptying Study - Solids

Tried: Pentasa, exercise, diet changes, pro-biotics, vitamins, laxatives, stool softeners, Miralax, Amitiza, anti-depressants, fiber supplements, water enemas, Fleet enemas, suppositories, mineral oil, phenergan, Zofran

Currently: Biofeedback

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/10/2010 7:18 AM (GMT -6)   
Be sure your doctors rule out colonic inertia of the small intestine. Otherwise surgery won't give you as much relief. If the problem is only in the large intestine and the rectum surgery will give you a better quality of life.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free

Hischildvalda
Regular Member


Date Joined Feb 2010
Total Posts : 176
   Posted 8/10/2010 10:23 AM (GMT -6)   
Welcome, tummy.  I also struggled with colonic inertia since I was a teen (40 years) - went to doctor after doctor who told me to take Miralax, drink more water, etc.  Also dependent on laxatives, having bm once per week.  On that day I, like you, would be sick, nauseated all day long.  Two weeks ago I had my colon removed, all but two inches, and now things are working like they should.  Please do join us at TOTAL COLECTOMY PART 36 for further discussion.
 
Val
Lifetime Chronic Constipation
1999 - Diagnosed with Fibromyalgia, Mitral Valve Prolapse
2001 - Total Hysterectomy
2008 - Diagnosed with IBS-C
July 28, 2010 - Subtotal Colectomy

tummytroubles7
New Member


Date Joined Aug 2010
Total Posts : 3
   Posted 8/11/2010 9:59 PM (GMT -6)   
wow, i can not tell you how grateful i feel for not having to be alone. thank you all so much and i am going to post this on the section total colectomy 36 that you suggested me to go to. Not to sound vain in any way or that my problems are any worse then any one elses but my fear with a bag is that fitness and my body are a huge part of my life that i have worked very hard on. I am in the best shape of my life and work extremely hard to keep my body where it is and have even had breast augmentation and why i feel like a beautiful person on the inside, if i had to have a bag and while i know u can cover it and health is the most impt thing, i would be devasatated as the beach is a huge part of my life and feeling sexy is impt to me. I really hope this doesnt sound shallow and i truly hope some women can understand where i am coming from. anyway if anyone has any further feedback id appreciate it and how do u know if u have colonic inertia only in the large intestine, the sidz marker test what does that show and how can you check to see if its also in the small intestine? does anyone know the best drs in manhattan at columbia presbeterian or mt sinai as i want to make an appt with a board certifed surgeon for gi surgery for a 2nd opinion? thank u my angels and i will keep u all in my prayers.

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/11/2010 10:56 PM (GMT -6)   
don't worry about sounding shallow, i'm like the most vain person you will ever meet! Trust me, i get through life being cute! When my looks go I am nothing! :D
But its totally possible to stay healthy and in great shape! Now, im not in great shape, thats just cause i'm lazy though. But i do insanity workout and lift weights everyday, doesnt' hurt anything.
there is no reason at all that you cant go to the beach. I have gone, unless you are going to a nude beach, noone will know! i promise!
And you can still feel sexy and wear whatever clothes you want, you are the same age i was when i had surgery so i can understand that, thinking you may not be able to wear the clothes you want that are in style or cute or whatever. My clothes come from gap or old navy, or stuff i had from way before i had surgery.
I was really worried about the body thing too, but i can still pick up a guy if i want, although my husband frowns on that :D
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!
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