My Great Weekend....back to reality....

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U B Tough
Veteran Member


Date Joined Aug 2015
Total Posts : 857
   Posted 8/21/2017 1:34 PM (GMT -6)   
I had hoped to end my little story on a positive note, but with this disease things can change in a snap.

Let's start with the positive then....Stelara is working well for my bowel! I went away this weekend to a resort 1.5 hrs away. I sat by the lake and looked at the stars, I went to a farmers market in the am, and spent all day at the beach! No bowel issues at all. My bm's are hard and normal and I'm going twice a day. I still have a bit of urgency but am fairly confident I have enough notice to go. I wore a bikini and skirt for the first time since my legs became destroyed by PG 10 years ago. I got a bit anxious that people were starring at my scarred legs but continued my stroll along the beach. I did take 1 imodium not because of my bowel but my anxiousness about an accident. I 100% could have made it to a bathroom, like a healthy person, but I really didn't want to temp an accident on the beach and use a gross public bathroom. Sometimes engrained anxious habits that come with this disease are hard to break. This weekend was huge for me after this terrible year. I'm proud of myself and grateful.

Bad news....as soon as I got home, I felt tenderness around 1 fistula. Now I have a new, huge abscess. These fistulas cause burning in my lady bits. I do not have any gyne for support or help. My CRS refuses to believe my it's the cause of my burning, even when I explained that when my chiropractor applies trigger point pressure on my pudendal nerve, the burning subsides. My CRS doesn't believe much of what I say, only what he learned in med school. Until I can get to the States or another surgeon in Canada, I don't have a choice but to go back to him. He also refuses the FLAP/LIFT surgery that I'm desperate for that are offered elsewhere.

So, I had a bit of a break....then WHAM. Unfortunately with this new, huge abscess I know how painfully devastating this week will be. I'll ride it out at home for as long as I can....I hate going to emerg.

Plucky
Regular Member


Date Joined Jun 2013
Total Posts : 313
   Posted 8/21/2017 6:42 PM (GMT -6)   
Hey UBT,
I'm so glad that you had a nice reprieve this weekend and were able to enjoy yourself--you totally deserve the break! But of course, I'm so sorry you're abscessing again. I hate hate hate the emergency room and I agonize over whether or not I need to go, and then once I decide I should go, I still resist as long as possible. At least it's Monday, so if you think you need to go then you can get there during the week and avoid the "weekend crowd".

On another note, I'm envious that the Stelara is working so well for you. I started having blood again between 3-4 weeks post-infusion. I had dropped my pred to 22.5mg andthings got worse--more blood, frequency, urgency, tenesmus, notbformed & waking me up in the night. Per my IBD Specialist, I have taken it back up to 25mg and still have some blood/urgency but have improved. She is now sending me to meet with her CRS and I know why--it's because she suspects the Stelara isn't going to work sad
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

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9921
   Posted 8/22/2017 4:56 AM (GMT -6)   
Hey UB. I'm glad you had a nice weekend away, but I'd look for another colorectal surgeon as soon as possible. Not sure if a gynaecologist would be useful in your situaton, but could you see a gyn about the burning?

I'm considering going to A&E for my eyes. Really, really don't want to. My GP faxed over a referral to eye casualty last week but I've heard nothing and in the meantime my right eye has got worse. It's uveitis, I'm so bloody sick of it. This is the fourth time I'll have been to the eye casualty this year.

Edit: Well, at least I avoided an A&E trip by phoning the eye casualty. Phone call took forever, but still miles better than hanging around 3-4 hours in A&E. Got an appointment at 2:45pm tomorrow - sorry UB, you can have your thread back now <_<.

Post Edited (NiceCupOfTea) : 8/22/2017 9:30:47 AM (GMT-6)

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