Now I'm loosing bladder control!!

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U B Tough
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Date Joined Aug 2015
Total Posts : 894
   Posted 9/16/2017 6:24 AM (GMT -7)   
Fistulas suck! Since this latest massive abscess I've been dealing with bladder accidents.

My bowel has gone from twice daily to 5 with greater urgency. Just had my 3rd Stelara injection on Wed.

Wondering if true remission will ever find me or if I'll just be managing my disease forever.

Good news: I returned to ballet after a years absence due to fistulas etc!! Was really, really hard. Only managed the barre but I'm proud of myselfsmile
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.

sparkleplenty
Veteran Member


Date Joined Nov 2010
Total Posts : 566
   Posted 9/19/2017 12:16 AM (GMT -7)   
Sorry to hear you aren't getting relief from your fistulas. But what good news that you got to return to ballet. That is awesome news!!
Diagnosed w/Crohn's in 2005. Meds: synthroid, allergy meds, B-12 (liquid), probiotics, fish oil, turmeric, migraine meds prn, and vicodin prn. Gall bladder removed 8/15. Started Entyvio 8/5/16.

Have tried: sulfasalazine, asacol, entocort, imuran(allergic), humira, remicade (serious joint pain/fatigue stopped after 2 doses), 6MP, cimzia, pentasa, MTX & Arava for joint pain

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 714
   Posted 9/20/2017 6:38 PM (GMT -7)   
UB,

Checking in on you.....hoping things are better.

The ballet update was wonderful!! Just gradually start doing what you can.....

I think of you often.

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,

U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 894
   Posted 9/23/2017 12:18 PM (GMT -7)   
Thanks guyssmile

I also went out to dinner and to a baby shower.

I caught a virus/ felt achy .....however during this time I had no fistula issues. Yesterday as soon as my virus cleared up my pressure butt pain returned. I'm so tired of abscessing and live in fear of my next major attack.

My GI has referred me to the Mayo for a possible LIFT or FLAP/plug combo. I find it hard to believe no CRS in Toronto/Canada does them. Issue is paying for it. I haven't worked in years and a near financial brink....

Don't know what to do anymore but keep dancing when I can.

I think of you very often too Clo. You are one tough lady and I admire you. xo

clo2014
Veteran Member


Date Joined Feb 2015
Total Posts : 714
   Posted 9/26/2017 10:58 AM (GMT -7)   
UB,

Perhaps Mayo has some type of assistance programs? Are there any other places in Canada that do these procedures that could help you? I am unsure how your healthcare system works there so my advice may not be pertinent.

It sounds like you are venturing out a little more so that is good.

The virus vs. Abscess is interesting. I often wonder if our bodies had to fight off another illness if the Crohns would get better or worse. Hmmmm.....

Take care of your self!

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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