I have to go to Emerg....

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U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 852
   Posted 8/25/2017 7:02 AM (GMT -6)   
My left butt cheek is hard and swollen with another abscess. I can't sit and am having trouble walking now. No signs of it bursting as I think this is where I had another drainage so scar tissue may be blocking it.

Do I go back to the same hospital that knows my experience over the last year, but where my CRS refuses to do anything but I & D's (rather than a LIFT/FLAP), refuses to acknowledge the disaster that the setons were and refuses to acknowledge how painful vulvodynia is from RVF? OR do I start again with another hospital?

I don't want to go through this anymore.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4336
   Posted 8/25/2017 7:18 AM (GMT -6)   
I don't know anything about abscesses, but from the way you are wording your post it sounds like you are very unhappy with your providers, so trying another hospital might be the right thing. You might want to check with the Canadian Crohn's foundation and see if they can recommend specialists in your area. here is the link:
http://www.crohnsandcolitis.ca
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 852
   Posted 8/25/2017 7:58 AM (GMT -6)   
Yes, I'm very unhappy. Yet I don't want to start all over again given how complex I am.....

Thanks gumby
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 8/25/2017 8:28 AM (GMT -6)   
There's no advantage in a hospital knowing your history if they don't care about it to begin with. And it sounds like yours doesn't. I would use this opportunity to try another hospital and get some new opinions.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 996
   Posted 8/25/2017 9:04 AM (GMT -6)   
Thats such a tough call. I went through that last year when I ended up in an an ER I hadn't been to. It was scary at first placing my trust in a whole new set of people but worked out well in my case. I really hope what ever you decide that you get some relief and some new opinions/options!

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 311
   Posted 8/25/2017 3:29 PM (GMT -6)   
UBTB I hope you are getting the care that you need! Saw you posted this early today so hopefully you have already been treated and are resting. I would have suggested you try a new hospital. Keep us posted!
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 852
   Posted 8/25/2017 5:24 PM (GMT -6)   
Thank you all. It really helps. I haven't been yet. Was nauseas and took gravol and crashed. If I go now, I'll just "sit" in ER all night. I will go to a new hospital early morning, if I can make it that long. The pain is excruciating. Taking oxy and MJ. Will take a sleeping pill later so I can sleep.

I hope when I wake it will burst on its own. I can feel the tract now....it's on fire.

Thank you all. NCOT; great way to put it!

Plucky....I'm so sorry you're still flaring. Could you add fibre and imodium and see if that helps get you through pred titration?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 996
   Posted 8/25/2017 5:27 PM (GMT -6)   
please don't wait too long and have it become septic sad hang in there

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1738
   Posted 8/25/2017 5:30 PM (GMT -6)   
So sorry you're having such a terrible time. Wish I had some experience in what you're going through, but unfortunately, all I can offer is support and prayers.

Just curious, do you live in the GTA? If so, I've heard Mt. Sainai has a very good GI department.

Really hope you get this taken care of and get feeling better soon.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 8/25/2017 6:03 PM (GMT -6)   
I hope the new hospital is better, UB. I would consider calling a taxi and going now though, if it's that bad. It sounds like you have access to the strong painkilers already, but for me a trip to A&E and being admitted meant morphine >_>. Always a massive relief if I was in 9/10 pain and with nothing stronger than paracetamol around.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 852
   Posted 8/26/2017 8:43 AM (GMT -6)   
I slept well but abscess is 10/10 painful. I'm having trouble peeing too.....ive packed & will call a cab soon to a new hospital. Bringing foam padding so I can sit in cab. How sexy am I ? Lol

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4336
   Posted 8/26/2017 9:22 AM (GMT -6)   
Good luck with everything. I hope you get some help!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

Labradorite
Veteran Member


Date Joined Sep 2009
Total Posts : 996
   Posted 8/26/2017 10:12 AM (GMT -6)   
good luck!

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 311
   Posted 8/26/2017 8:11 PM (GMT -6)   
UBT! I hope you've actually gone and are being treated! I'm very concerned. Don't worry about me, I'm uncomfortable but still very functional--toileting a few times a day and with blood/straining but it's not unmanageable (though I have been taking more hydrocodone lately). I see IBD Specialist and meet with their CRS on Monday and I'll tell you how it goes. But really I just hope you are ok and on the mend. XO
37yr female, dx UC '04, dx changed Crohn's Colitis '17
Currently: Stelara, Apriso, Prednisone *weaning*
Previously used: Remicade, Humira, Imuran, 6MP, Asacol, Lialda, Delzicol, Pentasa, Cortenema, Cortifoam, Rowasa, Canasa, Entocort, Uceris, Uceris foam
I'm Gluten-free. Supps: VSL#3, Cal/Mag, Vit D, Krill oil, EZFE

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 852
   Posted 8/27/2017 1:40 PM (GMT -6)   
Hi All!

Had ER surgery at 3am. They were a shocked at how large the abscess was....the size of my pelvic floor. No wonder I burn & itch. I didn't stop screaming or crying for 5 hours....:pain meds didn't touch it. Then I started vomiting while on all 4's given that I couldn't stand. Anyway, they suggested another seton which I refused given the last time, but I do have a pen rose drain in.

To say that once again my trauma is compounded is an understatement. And unless I find another solution like the LIFt I don't see this ending anytime soon. It's too awful for those involved. And it made me want to consider assisted suicide again.
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

gumby44
Veteran Member


Date Joined Nov 2007
Total Posts : 4336
   Posted 8/27/2017 2:12 PM (GMT -6)   
It sounds awful! I'm so sorry you are going through all of this, but don't give up hope. Hopefully the drain will help. Too bad they couldn't put you under anesthesia if it was so painful. Glad you are home!
58 yr. old female, diagnosed with Crohn's in terminal ileum Sept-Oct. 2007. Dx. with c.difficile 1/12, 10/14, 11/15, 1/16. Fecal transplant on 2/24/16, and so far, no more c.diff!

5/20/14: Ileo-colic resection surgery after stricturing and partial bowel obstruction.
Not currently on any Crohn's meds and in remission, but struggling with bad IBS.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15083
   Posted 8/27/2017 5:17 PM (GMT -6)   
I really hope they can do more for you at this new hospital. You need a break from all this craziness. It would be nice if you could find something that would make it all better.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 8/28/2017 7:50 AM (GMT -6)   
They should have put you under anaesthesia... that amount of pain isn't acceptable. These abscesses do sound like hell; it's bizarre and depressing at how nothing seems to stop them from appearing. In the meantime, I hope the worse is over and you can concentrate on recovery now.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 852
   Posted 8/28/2017 8:11 AM (GMT -6)   
Still in hospital. Vomiting, which isn't unusual after surgery. Very sore.

I was begging to be knocked out. The pain is unacceptable NCOT. They couldn't transfer me onto surgery bed with sedating me a little at a time .....

Lots of bloody drainage. Very traumatic. Everyone is traumatic & yet it seems likely I'll have to go through it again, unless this new surgeon will take a change and fix them.

Good news is that Stelara is really helping my bowel. NCOT ; pls find a way to get on it.

Plucky...you're too kind. Hang in. How many doses have you had?
female, Canada

IVIG (on hold)


UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic perianal abscess and fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. 100mg imuran

Hoping to start Anti-MAP drugs soon
Had a 10 week reprieve, now flaring...again. 4 years of flaring is tiresome.

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1812
   Posted 8/28/2017 10:31 AM (GMT -6)   
I'm glad you went to the new hospital and got some help. I know it's still painful but perhaps it will lead towards you getting some relief. Hang in there, you're tougher than you think. While you're in hospital have they mentioned doing a nerve block to relieve your pain?
DX with CD Aug. 1982
Gerd secondary to crohns
Entyvio
Methotrexate
Monthly b-12 injections
40 mg Protonix / twice daily
Zoloft
xanax
folic acid

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 671
   Posted 8/29/2017 10:04 PM (GMT -6)   
Oh no UB,

Just checked in and saw this.

I am so sorry you are going thru this.

They didn't knock you out??? OMG!!! That's horrible!!! I have not gone thru what you have....my RVF has slowly but surely been growing larger andctge out edges of skin are dead and the area is increasing....so I know the tingly, cramp, achy pain. The abscess pain though.....just the thought makes me want to hide in the closet!!!

Hang in there!!!

Clo
06/12-07/14 symptoms start, no diagnosis.12/14 diagnosed UC & diverticulitis. 01/15 hosp- fistulas, DX changed to Crohns, 02/15 developed new skin rashes, eye problems and painful joints 06/15 Hosp.2x again.. new specialist.Said was worse case he's seen. 7/16 hosp 5mm Stricture stricturplasty to 15 mm.09/16 colostomy. Meds: Remicade, methtrexate, prednison,folic acid, vit D, calcium, pro biotic,
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