Flex Sig today, results as expected, not good

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Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/19/2009 2:48 PM (GMT -6)   
Had a colonoscopy in Oct that showed all but the last bit of my colon to be healed. Since then I've been on rectal meds and it's been two years of Remicade infusions, but I'm still not 100%. Feeling A LOT better since before I was on Remicade, but not how I want my life to be.

So this afternoon I had a flexible sigmoidoscopy and the inflammation is still there, just the last few centimeters, grrr.

My GI says me and the UC are at a stand-off, the Remicade has gotten me pretty far along, but the UC just ain't giving up. He says I am an excellent candidate for the j-pouch surgery and that if I do it, I will feel much healthier and won't have to worry about the longterm effects off the meds I am still on. So, I agree and have wrapped my head around it (I was pretty sure this was where Iwas heading).

The glitch is I won't be fiscally ready to take two months off, close down my business and rebuild it when I am well again. I will likely be ready in about a year, but winter is a better time to close down, after the holidays. GI says as long as I keep the status quo, don't get any worse, he's fine with that, so unless my symptoms get worse, or I suddenly come into about seven grand looks like out goes the colon in about 18 mos.

Thank goodness for the Remicade giving me the time I need to get comfortable with it all.

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


quincy
Elite Member


Date Joined May 2003
Total Posts : 30999
   Posted 6/19/2009 3:13 PM (GMT -6)   
Oh my...it's still good news that things haven't gotten worse...but I do understand that the last few inches are really a PTIA to get healed sometimes.

I would strongly suggest you possibly try to incorporate probiotics and fibre supplements.

The Rowasa..maybe you can insert it a bit differently and sit up or lay on your back after using it rather than concentrating the med as high as it can go.

I do hope you're able to improve over the next few months....or that you're able to last as comfortable as possible until you do have to have the surgery.

Thanks for the update!
quincy
*Heather* Status: maintenance Asacol 6 daily + Salofalk enemas every 3rd night
~diagnosed January 1989 UC (proctosigmoiditis)
~UC meds: Asacol (3 x2 daily); Salofalk enemas nightly for flares & taper to maintenance 
~Bentylol (dicyclomine) 20mg as needed; Ranitidine (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma) 
~vitamins/minerals/supplementsProbiotics....(Natural Factors Protec, Primadophilus Reuteri Pearls). @ bedtime
~various digestive enzymes as needed
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 6/19/2009 3:49 PM (GMT -6)   
     The best of luck to you.  I sure can relate to those last few inches of inflammation.  I think I could cope a lot better if it were further into my colon.  Cramps I can tolerate.  This is terrible, can't even pass gass without pain.  Right now I am sitting on a pillow at the computer.  Have you ever tried the Cort enemas in place of Rowasa?
     I must admit these last few weeks have been very uncomfortable, but as long as I can stay out of the hospital.  I'm quite a bit older than you and have high blood pressure issues, so kinda scared of surgery.  I told my husband that if I can get over this herald, I will really, diligently watch my diet and stress level.  However, if I have another flare within six months or so, I will definitely seek another course.  Scared of Remicade.  My GI doctor is pushing it but his associate said a definite NO for me because I was exposed to the TB virus back in the 60's and apparently this associate lost a patient while she was on remicade and she too was at one time exposed to the TB virus.  My GI said there are solutions to that.  Well, I certainly don't want to be a guinea pig.  I may be almost 63 but I still feel I would like to stay around a few more years.  My husband is 71 and runs circles around me.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Meds as of June 09: Colazal (6 per day), 6MP (50 mgm), Probiotic (upped to 3 per day), Fish oil capsule, calcium, multivitamin, Cort enema nightly, Canasa in morning.  Also taking Benicar and Toprol to control high blood pressure.  Getting old is a b****.


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 6/19/2009 3:55 PM (GMT -6)   
Good luck with everything! It sounds like you've got a good plan worked out, and I hope your colon cooperates until you can take the time off for surgery.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/19/2009 5:46 PM (GMT -6)   
Thanks all.

Quincy I am taking the probiotic Culturelle. I don't take fiber supplements but I do make sure my diet includes fiber, mostly the soluble kind as "roughage" is, well, kinda rough on me.

Christine, shame you aren't a candidate for the Remicade, as it has proved very helpful for a lot of us, and even though it isn't getting me quite all the way, before I went on it I could barely function. Before you rule out surgery due to your age and BP issues, consult with a surgeon, I am sure there are precautions, etc that can be taken. Uncontrolled UC has it's own risks, remember.

I love this site. Everyone is so supportive. It's nice having a place to come and discuss these things with people who really know what I am going through.
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 6/19/2009 5:51 PM (GMT -6)   
I hear you, Meesh! God, isn't it frustrating to still have inflammation after all the meds? I'm in the same place as you, at a standstill. What exactly do you do, anyways? I know you've been trying to save up in order to take time off. Well good luck- I hope things improve for you- I know how you feel though, at this point, you just know it's not gonna go away! Now it's down to who can outlast who, you or the UC! Go for it!
diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 6/19/2009 6:09 PM (GMT -6)   
Hey EvaLou, I am the owner/operator of a mobile dog grooming business. I have a van that is equipped with a full grooming salon (powered by a generator) and I drive to my clients' houses, bring their dogs into the van and groom them., I groom 5-9 dogs a day, five days a week. I love working for myself, but there's no paid sick days or vacations! I figure to comfortably take two months off to recover and then cover the slow time of rebuilding the business - inevitably I'll lose some clients, although I expect most of them are fairly loyal and will eagerly await my return -- I want to save up $10K, I have three already since I started the targeted account, just since December when I realized where this might be going. My business provides more than half the household income, so while money will still be coming in, a huge chunk will be gone.

I will look into getting a groomer to perhaps take over the business for the time I am out, but that risks my van, my clients -- not sure I want to deal with that. But if I could find the right and trusted person, that may be a solution to at least bring in enough to cover the fixed expenses of the business (van and insurance payments, etc), then I'd just have the household expenses to cover. I certainly don't want to drop my cable and house cleaners while I am home recovering!

Meesh
47 yr old female, dx'd UC April 27, 2006; mild arthritis in lower back, dx'd May 2008; Osteopenia dx'd 6/08 Finally achieved remission mid October 2008!!

16 Remicade infusions, current scheduled every 6 weeks: 1st: 7/21/07; most recent: 6/06/09; Current meds & supplements: Lialda, 4 tabs in the morning; Xanax as needed (rarely); Rowesa and/or Canasa; multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; Vitamin D;

Past meds: Prednisone 4/06-4/08; Entocourt EC; Asacol; Colazal; Venofer (iron) injections Dec '07; Imuran (extremely bad reaction 2/07); Protonix; Lexipro

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