Share Facebook
Crohn's Disease Forum » Support Forum » Vent Away » I am loosing my sh!t, more ways than 1. Sad/frustrated


04-01-2017, 07:39 PM   #1
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
I am loosing my sh!t, more ways than 1. Sad/frustrated

I just honestly do not know how much longer I can take it! I see my GI regularly and agree and am following his plan, but this loosing my bowels business I just can't take!!
Long story short, humira quit November, started Stelara, and this whole time C-diff 3 times. Right now on Vanco for 21 days with no sign it's working...I just want to crawl in a hole and give up. My hubby is super supportive, I wear adult diapers, I bleach, I clean, I wash my hands till they hurt & crack. I am over all of it!!!!!
Whoops!
__________________
Wherever you be.... let the wind blow free!
04-01-2017, 07:54 PM   #2
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
All of us are here for you. Feel free to send a pm.

__________________
Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
04-01-2017, 09:14 PM   #3
Juulez
Senior Member
 
Juulez's Avatar
 
Join Date: Mar 2017
Location: Naples or bonita springs, Florida

My Support Groups:
I have the same thing ! I feel like I'm a baby pooping in my diapers it's even the right color and runny tmi!!!! Oh and theodor and I don't even know when it happens till I go in the bathroom for something! It is awful! I feel so bad for you and all who deal with this.
__________________
so much love, Julie
04-01-2017, 11:53 PM   #4
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
woops,

You can pm me too.
04-02-2017, 06:46 AM   #5
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
It just gets so overwhelming.... when the humira was working, I was walking 6-8 miles on the weekends, swimming, doing normal people stuff. Now I'm afraid to leave my house. The Stelara is working, but the c-diff just never wants to leave. I work as a nurse so I know where I'm getting it, but I can not refuse to take care of certain patients. No idea how to avoid them. Just feel like I'm mentally cracking....& can do nothing about it. Thanks for listening guys. Very glad I can get on here and vent!
04-02-2017, 10:45 AM   #6
Bufford
Senior Member
 
Join Date: Dec 2015
Location: Northwestern Ontario

My Support Groups:
I hear you! I pooped myself regularly on the job, in the checkout lanes at the store, and having to sit in wet pooped pants for the hour long drive home. Sigh, I ended up keeping several extra pairs of underwear on hand at work. Often I would strategically layer my pants with paper towels while at work, and mapping out the possible toilets I could use as I worked through the mechanical rooms of the building. At times I simply stank.

It all ended with a huge abscess that left me with a permanent colostomy. At first the plan was to let my rectum rest, and then hook me back up again. But the damage and the active Crohn's have made that not possible. Life on the bag is not so bad when compared to those years of pain and incontinence.

My advice to anyone with incontinence due to IBD, is get it monitored by a GI.
04-02-2017, 11:42 AM   #7
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Agree

04-02-2017, 11:52 AM   #8
Juulez
Senior Member
 
Juulez's Avatar
 
Join Date: Mar 2017
Location: Naples or bonita springs, Florida

My Support Groups:
I hear you! I pooped myself regularly on the job, in the checkout lanes at the store, and having to sit in wet pooped pants for the hour long drive home. Sigh, I ended up keeping several extra pairs of underwear on hand at work. Often I would strategically layer my pants with paper towels while at work, and mapping out the possible toilets I could use as I worked through the mechanical rooms of the building. At times I simply stank.

It all ended with a huge abscess that left me with a permanent colostomy. At first the plan was to let my rectum rest, and then hook me back up again. But the damage and the active Crohn's have made that not possible. Life on the bag is not so bad when compared to those years of pain and incontinence.

My advice to anyone with incontinence due to IBD, is get it monitored by a GI.
So true and get well fitting diapers! And don't cheat on whatever diet they put you on! I'm sorry we have to go thru this it's so sad and miserable. I hope my capsule shows what he wants and then I can start Entyvio. 😔
04-02-2017, 11:54 AM   #9
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
So true and get well fitting diapers! And don't cheat on whatever diet they put you on! I'm sorry we have to go thru this it's so sad and miserable. I hope my capsule shows what he wants and then I can start Entyvio. 😔
I hope the same for you.

04-02-2017, 12:58 PM   #10
eleanor_rigby
Senior Member
 
Join Date: Aug 2012
Location: Cheshire, England, United Kingdom

My Support Groups:
can you get a fecal transplant? It is meant to be very effective for c-diff
04-02-2017, 02:19 PM   #11
If*
Senior Member
 
Join Date: Apr 2013
Hello, has your gi involved an infectious disease specialist? From my understanding they can test meds, antibiotics on infections to see what may be successful in treating. Could this be a possibility?

Be well, God bless.
04-02-2017, 05:33 PM   #12
woops!
Senior Member
 
Join Date: Apr 2010
Location: Virginia
Thank you guys for all your support. I'm sorry that everyone has to go through this horrible disease. My GI has mentioned doing the fecal transplant, honestly I would love to just do it now and be done. Would love to just go ahead and get a bag and be done. My insurance company dictates everything, so I have to finish my 3rd round of antibiotics first and then see how it goes. Part of the problem is I work with c-diff patients as a nurse so I will always be around it. I keep my eyes open at works for a nursing job that has less patient interaction, but thOse jobs are hard to find and don't come around very often. I feel stuck as I am the only one working in my house so I can't leave my job to look for another. Can't take any days off as after my January hospital admission I don't have any PTO or sick time left. ..... Im just stuck with poop.
I really appreciate everyone's support, coz this disease is holding me prisoner!
Whoops!
04-02-2017, 06:29 PM   #13
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Thank you for being a nurse. I have a lot of appreciation for you folks. It is a very demanding job. You are risking it all to help others. Good on you!
04-02-2017, 07:00 PM   #14
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Agree

04-03-2017, 09:30 PM   #15
cmack
Senior Member
 
cmack's Avatar
 
Join Date: Aug 2014
Location: British Columbia

My Support Groups:
Hi woops,

I hope you are OK. Talk to me any time. Unless I'm asleep.
Reply

Crohn's Disease Forum » Support Forum » Vent Away » I am loosing my sh!t, more ways than 1. Sad/frustrated
Thread Tools


All times are GMT -5. The time now is 09:18 PM.
Copyright 2006-2017 Crohnsforum.com