Long-time reader, first-time poster, full-time pooper

[bumontherun]

long-time reader, first-time poster, full-time pooper

[after years of reading message boards and never posting, i'm finally compelled to post because 1) i needed to try to 'connect' with others who have accidents all the time 2) my brother who also has crohn's just started using/reading message boards and inspired me to finally share]

I was first diagnosed in 2001 w/UC, then in 2008 w/Crohn's.
No surgeries yet--I recently thought I was finally ready for it after my brother just had resection and temp ileostomy [but he's back in a flare]. I was told I can't have surgery with a perianal fistula and my inflammation is primarily just in the very end of colon/rectum.
I've only ever been hospitalized 3 times --all of which in the last 3.5yrs [since I moved to L.A. from Boston]

[the following was my (1st-ever) reply to a thread about 'accidents' on healing well] --

I still have accidents all the time. Pretty much any time I need to go and I'm not near a bathroom. This has been the case for the most part, since Remicade stopped working for me [in Dec. 2006!].

I guess it's progressively gotten worse up to the present 'cause the small area of my lower colon will NOT get healthy. I can't eat before I leave my house and I almost never leave the house without taking Lomotil. My accidents aren't usually even diarrhea. I lose formed or semi-formed stool. I often don't have a meal until dinnertime if i'm working [i start at 12p] or if i have to do errands during the day.

I've worn a pad every day for the past 3 years and gone through so much underwear, I should own stock in Victoria's Secret. I started wearing a pad when I had a recurring perianal abscess which turned into a fistula.

I had a seton for about a year and a half..almost 2 [then it fell out!]. When I went for yet another [bowel] surgery consult to see if I could have a resection or colectomy, my surgeon said my fistula wasn't healed and the lower colon/rectum was too inflammed for surgery. I went back for what was supposed to be another seton placement, but turned into an anal fistulotomy [last month]. I'm waiting now to see what my options will be.

I'm lucky my manager at work told me about intermittent FMLA, so that my job is protected. I hardly ever call out sick, but I'm often tardy because I'm either 1) afraid to leave my house until i feel "empty" or have had 2-3 BM's; 2) need to stop for a bathroom on the way; 3) have an accident [i can sometimes clean up and continue on to work, but usually turn around and go home to change and stick my butt under the tub faucet]

I have some crazy pooping-my-pants and almost pooping-pants stories. But I'll save those for another post.

OH! just found out about the GI monitor app for my iPhone. pretty cool.
...can insert link yet, but it's wellapps.com

um, how can i add my signature/med history??:
33yr old female with Crohn's.
2001: UC diagnosis
2008: dx changed to Crohn's
prev. meds: Asacol, Imuran, Remicade, Humira, Cimzia, Cortifoam, Cortisol enemas, Rowasa, Amitriptyline, Nortriptyline, Flagyl, Cipro,Vanco, phosphatidylcholine [supp]
current meds: Colazal 750mg [9/day], Celexa 40mg, Lomotil, Prednisone 10mg, folic acid, calcium, glutamine
4/1/12: 3rd attempt at gluten-free

 

[Angrybird]

Hello and welcome to the forum :bigwave: I am sorry to hear that you are still having problems, what has your doc had to say about it - do they think it is muscle related at all? Do you get other symptoms with this?

AB
xx

 

[bumontherun]

my muscle has been checked a few time [the sphincter muscle] and they always say it's ok.
my other symptoms that i just am used to by now --abdominal pain w/BM's [usually before, during and after i go --but lately only before...controlled with Norco...but pain hasn't been as bad right now]; blood in stool [more the week before my period, but only about 30% of the time otherwise]; frequency; no energy[i can't drink coffee anymore, so i drink enery drinks --sugar free rockstar, which i think i'm become immune to. i know --bad habit, but i need something to keep me going

 

[Curtis123]

There will Come a Day that this will all be a distant memory!!! Keep after your GI.

 

[Jennifer]

I see you're in LA, do you feel as though your GI looks out for your best interests? I'm looking at your current meds and symptoms and my first thought is no. I used to live down in the LA area and it was very hard to find a good GI around there. You may have to shop through a few to find one worth seeing (I'd toss a name at you but none of the ones I saw were worth seeing and I've forgotten their names for you to avoid them, sorry). Is it possible for you to go on an immune suppressant med like 6MP etc? I know that along with an anti inflammatory med (I had Asacol, had to look up Colazal) with steroids helped me go back into remission during my flares. Has your GI mentioned a change in your meds at all since you're bleeding fairly regularly?

Welcome to the forum!

 

[bumontherun]

thanks for you reply...

i'm seeing some of the supposedly best docs in the world for IBD--at Cedars Sinai. I've seen 2 docs in the group as a regular patient and a 3rd just while i was an inpatient once. my doc in boston used to tell me i didn't complain enough. so maybe that's part of it. i've just come to accept this as my way of life. for that past 6yrs, i just know anytime i leave my house there's a chance i'm going to poop myself. i go through ok periods when i feel 'brave' and feel like being social. but a lot of times, it's just easier to not go places that don't have bathrooms.

i was on Imuran for several years [similar to 6MP] then it wasn't renewed when i first starting seeing a doc in L.A. [@ Cedars]. then i restarted it --no huge improvement and i did bloodwork to see if my body was absorbing it all --i was, so it was stopped again.

I work at Cedars too --doing paperwork/pt registration in ER --so i'm constantly moving..on my feet..often stressed and overwhelmed, so that's not helping my situation. i know i need switch positions, but i just kind of feel stuck. and i'm really lucky that i have the understanding manager and supervisor as i do. some day i wan't to finish school --i was in a nursing program from '05-'07 but left 'cause of my ass problems. i need to do it!

i always have to chat with crohn's & colitis patients whom i meet in the ER. well, sometimes if i'm having a bad day/tired/grumpy i don't feel like talking --at all. i think that's part of why i've never posted on forums like this...i found comfort in reading posts, but i often don't feel like talking/sharing when i'm in a bad palce.

i must say i could not imagine going through this stuff as a kid --like you, at 9! ugh. heartbreaking. i've seen a couple kids in the ER. sucks.

 

[Jennifer]

Ya you gotta speak up with your doc and complain a bit more. Bleeding isn't normal and should definitely be managed with medication. No one should have to feel like they have to live with any of the pain, frequency, blood loss etc. Avoiding social activities and fearing to leave the house, you're boarderlining agoraphobia. I have a panic disorder too and did become home bound cause I feared having a panic attack in an area that I didn't feel safe in. Home becomes your safe place. Fear of losing control of your bowels is basically the same thing just a different issue. I was forced to leave the house for school just like you are for work but outside those things leaving your safe place becomes difficult. I'm sure you must bring a change of clothes with you but that only helps one issue and the Lomotil is only masking it as well. I hope you're able to get the treatment you need from your GI and let them know everything that's been going on even if you're used to it.