sphincter of steel...

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madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 7/14/2008 1:17 PM (GMT -6)   
Ok, sorry for the title of thread but I couldn't resist..... But yes, that is my claim to fame...... I can hold it in for hours- smiling and talking as sickening pain and pressure shoots through my mid section - always waiting until I get home for release.  (Old story:  bodily functions treated as almost shameful or rude in childhood causing something like a "shy colon")
 
I have done this for years and years including during UC flares.  In fact I think it was from such long practice of endurance that I was able to experience two unmedicated labors with barely a whimper. 
 
The few accidents I have had was during the night when nocturnal diarrhea was still a new thing.  But basically, well, I use the spincter of steel to keep everything in its place until I'm in a comfortable space which usually means home.
 
However, 5 weeks ago I had fistulotomy (kyptonite!) which involved an incision through my sphincter muscle and well, to be blunt, now gas just arrives at my formally secure exit and hardly slows before loudly blowing on through..... No Matter Where I Am. 
 
Obviously I find this very embarrassing. Also I am having some leakage which is also disheartening.  Also, like murphy's-law-icing-on-the-cake,  I have been feeling well enough to get back to running regularly but find that toward the end of my run I am having some urinary incontinence as well.  And I kegel! 
 
Honestly, I just had to whine about this.  I hate losing control of anything and I can't imagine bringing this up in pretty much any conversation I have had recently with family or friend...so thanks for reading. 
 
UC since 10/05, first symptoms felt as early 1983
canasa and lialda daily
 


sore_guts
Regular Member


Date Joined Jun 2007
Total Posts : 185
   Posted 7/14/2008 5:18 PM (GMT -6)   

thats funny - your description of sphincter of steel.  I was the same exact way before UC.  I would hold back poop for hours while at work waiting to get home before going.  I even would not go for days when traveling to new places (new bathrooms).  There were very, very few places I was comfortable pooping before UC.  I think it became an unconsious thing.  My body just sorta shut-down colon-wise when leaving home, but once I'd get home it was like someone flipped a switch and suddenly I would have to go.

 

 


 
sore_guts
 
36 year old female with left-sided UC
lialda 1 pill  3 times/day
Rowasa enemas on occasion
iron supplements 1/day
multi-vitamin 1/day
Digestive Advantage Colitis formula 1/day
 
 


idontfeelgood
Regular Member


Date Joined Nov 2005
Total Posts : 26
   Posted 7/14/2008 6:09 PM (GMT -6)   
wow i'm jealous! when the urge is there, i need to find a bathroom asap

kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 7/14/2008 7:01 PM (GMT -6)   
omg... it doesnt matter where i am, who im with or whats going on... if i need a can, get outta my way.
i can go anywhere really.
not one of those shy people at all.
much to my husbands dismay, i usually forget to close the door. hehe.

although, knock on wood (lots of woood), i have not yet had an accident!
i have magickally always made it to the toilet.
so, i would like to take a moment and thank my sphincter for its role in this matter.
thank you.
steph - 32 - female - UC since 2000
currently flaring again..  grrr! (triggered by stress - grrr)
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
prednisolone 25mg x1 a day (ick ick and did i say ick?)
tumeric capsules x3 a day
 
 
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/15/2008 5:34 PM (GMT -6)   
hey madabs, I unfortunaely do not have a sphincter of steel, nothing like it! I wish though. But- how did the fistulotomy go? Is it closed? I still have mine- we just upped my Imuran dose to 150mgs/day to see if that has any effect. If not, the only other options are surgery or live with it...

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 100mgs/day
Culturelle
 
 
 
 


jars05
Regular Member


Date Joined May 2003
Total Posts : 297
   Posted 7/16/2008 5:25 AM (GMT 0)   
I don't have a sphincter of steel, but I usually can get to a can. Only once did I "blow up the briefs."
Age: 30
Sex: Yes please!
Location: Missouri
Diagnosed with UC in 1997.
Medications: 100 mg Azathioprine a day, Blech 40mg Prednisone
Supplements: calcium, and multivitamin
No. of colonoscopies: 5
Last scope: 6/7/08-everything looked ok.
 
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/16/2008 7:12 AM (GMT -6)   
Jars - ROF**** Never heard that term . . .I love it!

Madabs - I feel your pain, my family instilled that there was no acceptable bodily function that should be shown in public, they were so bad about it that to even sneeze you were supposed to leave the room. I hope you can get things worked out. . .keep going with the kegels, they do help. After delivering my son I couldn't sneeze or cough without incontinence, I kept kegeling and I can cough and sneeze with the best of them. . .just give it some time those muscles seem to take forever to get into shape.
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 7/16/2008 7:48 AM (GMT -6)   
Well, having the sphincter of steel actually caused me a lot of pain, but it certainly had is advantages! I guess that is why I am bummed out my sphinster muscles have weakened from surgery. As for the bathroom habit repression from childhood - I thought I was the only one.

Eva Lou - I'm 5 weeks post op and surgeon says at least another four weeks to go yet - the wound still looks huge to me, but doc says it is doing good. It is still sore, but nothing like the fistula before the surgery. Don't you have a RVF? I didn't think they could operate on those. I am very lucky because my fistula was anal-rectal and was not too high for surgery.

Peanut Mom - you must be a much better kegel-er than I because I last gave birth eight years ago and if my bladder is full I still have to cross my legs before I sneeze.
UC diagnosed 10/05, first symptoms 1983
canasa and lialda daily
Trying out Digestive Fitness Probiotic
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 7/16/2008 8:09 AM (GMT -6)   

It is an RVF, & yeah, they can operate.... however, it's a major pain to do & there's no guarantee it won't just re-open! hence my hesitation to rush off to the surgeon. I really have no idea how they operate on one to make it close, but my GI tells me the surgeon who would have done my proctocolectomy is a genius at operating on fistulas. Wow though, good deal for you!! I'm so jealous. I will keep taking the higher dose of Imuran for 6 motnhs or so, & if it's still there then go talk with a surgeon. Maybe. I also keep thinking if I ever have to have surgery due to the UC, I can have it taken care of then. Speaking of kegels, I never do them, but have discovered some loss of ability to hold my bladder since my UC has been around. I always figured the straining & pushing one does during a flare has to affect the muscles to hold your urine in also. I don't have accidents or anything, even when I sneeze!!!, but I can't hold it as long as I used to be able too. Maybe it's just geting older.


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
Culturelle
 
 
 
 


Mellie
Regular Member


Date Joined Mar 2008
Total Posts : 110
   Posted 7/16/2008 5:59 PM (GMT -6)   
skull I had to laugh about this post because last night I went out for a 9 mile run....4.5 miles out 4.5 back. Problem is..when I reached 4.5 miles away from home that 'all too familiar feeling' comes over me...nowhere near a bathroom and I found myself praying to God to keep everything intact til I got home. Consider how hard it is to squeeze the cheeks while sitting still...imagine the feet thumping on asphalt! I knew if I slowed to a walk it would take twice as long to get home to a bathroom. I made it home..through the door...and I felt sick the rest of the night. On a good note I ran the full 9 miles..but as a result my guts were killin' me from testing my 'sphincters of steel' haha
Diagnosed with Crohns/Colitis in 2004. Currently taking Azulfidine 500 mg/3 x 3 day, Synthroid. Have had joint complications such as pyroderma gangrenosum in ankles as complication of IBD. Started Humira March 2007


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 7/16/2008 6:05 PM (GMT -6)   
madabs, you are hillarious. What is a fistulatomy? Is it common with uc?
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Canasa X 2 
Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


madabs
Regular Member


Date Joined May 2008
Total Posts : 388
   Posted 7/17/2008 7:44 AM (GMT -6)   
Mellie, I feel your pain.  Running makes me have to go too!  I get up extra early on running days to empty myself out before leaving the house. Doc says to take immodium before going out to jog, but I haven't tried it yet.   Sounds like you had a great run!
 
bellski, a fistulotomy is surgical precedure to correct/remove a fistula (an abnormal tunnel that has formed between organs or between organs and skin.  they can form in many place on the body).  In my case, I had a fistula that formed a channel between the skin near the outside of my anus and my rectum. The surgeon cut along the top of the tunnel to open it up or "let some daylight in" as I say.  That was the fistulotomy. Fistula's are uncommon but not unheard of complication of UC, but are much more prevelant in those with Crohn's Disease - as least throughout the digestive system. 
UC diagnosed 10/05, first symptoms 1983
canasa and lialda daily
Trying out Digestive Fitness Probiotic
 


PeanutMom
Regular Member


Date Joined Jun 2008
Total Posts : 197
   Posted 7/17/2008 8:38 AM (GMT -6)   
I have to say "Hat's off" to both of you for running. . . .I can't even think of trying to run! A brisk hike with my 27 pounds of son in a back pack pack and my 2 dogs is almost more than I can take! The thought of moving the pace of that hike up to a run terrifies me!
Kim
~ Mom of Nathaniel aka "Peanut" 18m (6/08)~ Married ~ 36
"The List "
- UC dx 8/2000 - Culturelle 1x day Prenatal Vitamin (Currently not flaring but not what I would call in remission either.)
- CKD Stage 3 (Chronic Kidney Disease) - Lisinopril 7.5mg - Still have 27% function!
- Anemic - Ferolicit IV on hold (6 weeks free of IV, check in August)
- Allergies - Zyrtec 10mg 


anik45
New Member


Date Joined Oct 2007
Total Posts : 2
   Posted 8/26/2008 3:18 PM (GMT -6)   
I am a new member and I think my surgery was a fistulotomy. I had it on June 26 for a complex horseshoe fistula which means it goes from one side to the other. The surgeon put in 3 draining setons, 1 cutting seton and did a mucosal advancement flap. My question is how long will it take to heal and can an abscess re-occur?

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 8/26/2008 4:26 PM (GMT -6)   

You'll likely get more replies if you pose your question over at the crohn's forum since fistulas are crohn's related and there's a lot of experianced crohnies with fistulas over there.

:)

anik45 said...
I am a new member and I think my surgery was a fistulotomy. I had it on June 26 for a complex horseshoe fistula which means it goes from one side to the other. The surgeon put in 3 draining setons, 1 cutting seton and did a mucosal advancement flap. My question is how long will it take to heal and can an abscess re-occur?

My bum is broken....there's a big crack down the middle of it! LOL :)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 8/26/2008 5:20 PM (GMT -6)   
My sport is golf, and in early 2007 I had a "suburethral sling" put in (outpatient surgery) because every time I drove the ball I had a little urine leak so had to wear an incontinence pantiliner. It was not a big deal (compared to the UC), but the surgery worked and it's a lot more comfortable without the liner.
I assume my bladder is tiny and weak because it never needed to build up size or strength! Or maybe it was just age-related; I never had children.
I tell my golfing buddies who are used to my stopping at the course bathroom every time that, now that I know about the gluten problem and my system is calmer, I might even grow a bladder by next summer...let's hope.
49 year old female, diagnosed UC/pancolitis 1985, no surgery but much suffering.
Asacol/5ASA maintenance for 20+ years, usually 3 pills 2x day. 
Currently tapering off presnisone from lingering flare;
August 2008 sought care of naturopathic doctor. Tested gluten intolerant and started gluten-free, soy-free, etc. diet which resolved flare. Also Replete probiotic, DGL (licorice root, slippery elm), Permeability Factors. Slow-release iron and B-12 shots for severe anemia.
 


NMcP
Regular Member


Date Joined Mar 2008
Total Posts : 212
   Posted 8/26/2008 6:15 PM (GMT -6)   
My maiden name is Steele. My sphincter however seems to be made of cardboard.
Age: 48
location: Seattle, Wa
currently in small flare, tail end of colon
Diagnosed with UC in June 2006
Medications: Asacol 3 pills 3 x/day, Cortifoam at bedtime, Canansa in the morning
No. of colonoscopies: 1
Originally diagnosed with moderate UC, pancolitis


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 8/27/2008 5:23 AM (GMT -6)   
Madabs,

You crack me up as well as make me jealous. Prior to my UC dx, I was very active, but now when I get that feeling, I can resist once, twice, maybe three times before sudden impact. Running, walking, biking all jar things loose, which started leading to shortened exercise sessions, and now I can't barely squat down to pick things up without the urgency hitting me. You mentioned Immodium, and I tried it, but after a copule of days it caused me the worst cramping and abdominal pain I've had. I'd be willing to give you the rest of my bottle if you want to try it out. I won't be using it anymore...lol!
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, and fexofenadine for allergies

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