Skip to main content

Thank you. I guess I'm lucky I've never been hospitalized for a flare. I was hospitalized for c diff. and another time for really severe reoccuring campylobacter infection that we initially thought was my UC. I should have gone to the hospital for my very first flare but I was told I was no longer covered on my dad's insurance at the time and I had just started my first job out of college. My own insurance hadn't yet kicked in.

S -

You mention that steroids are doing a number on your bones ... back in the mid 80s, after a couple of years of relatively high dose prednisone, I was dx'd with avascular necrosis in my knees.  Only a matter of time until I needed them scoped to clean them out.

Fast forward to 2009 and I had bilateral replacement at 46 yrs old.  And that was after back surgery (because I walked like John Wayne for years).  And elbow surgery.

Now hindsight is unfair, and there is no definitive proof that it was the prednisone, but I would have pulled the trigger earlier than I did and not subjected my body to the cocktail of medications that I did.

My 32 year ride has not been perfect but the years I lived with active UC were far, far more challenging -- emotionally & physically -- than the last 3 decades.

Last point and certainly an oversimplification, but after being on this site for years and talking to many UC/pouch folks ... my totally unscientific belief is that either you'll respond fairly early to meds or you won't.  Folks will disagree but that search for the panacea begins to preclude 'rational' decision-making imo ... how many enemas?  How many different meds?  How many diets? 

Today my joints are good ... I can climb and bike again ... keep the big picture in mind ... it's your life.

- M

Hi Sara,

I was diagnosed with moderate to severe pancolitis in April 2015 and after hospitalizations, C-Diff, blood transfusions, TPN for several weeks, shingles while in a nursing facility for rehab and attempting Remicade with limited results, I decided to have surgery, three steps.  It just seemed like one long flare, feeling only slightly better at times.  I was 60 years old for my first surgery, so age was a factor.  I was reasonably healthy, at least healthier than when I had lost 35 lbs.  I had gained back 25 prior to surgery.  I had my first surgery in November 2015 and my last was August 2016.  It will be 5 years since takedown this August.  I am doing pretty well, active, hiking and biking during the warmer months.  During the pandemic, we got a lot of outdoor exercise, winter hikes/walks and snowshoeing.  I have been more active since my j-pouch, also since retirement.  The first 6 months to a year are an adjustment period.  Also, I take Lomotil every evening so I don't have to get up during the night and during the day, usually once if I will be out for a while.  For me it was a no brainer as to getting surgery.  Good luck with your decision.

Michael,

I was on prednisone chronically from 1972-1992 in varying dosages. I had a bone density scan done in 2010 or so which determined I had osteopenia in my hip which my doctors attributed to prednisone use. It does affect the bones over time and can cause osteoporosis as well as AN and is something for anyone to be concerned about if they are taking it for years.

Last edited by CTBarrister

I was diagnosed with UC in 1999 at 42. My mom had been diagnosed in 1982 with UC. At that time she was on azulfidine and prednisone. She made it to 1986 and then had a traditional ileostomy. I only made it 2 yrs before S - pouch surgery in Omaha. They had me on mesalamine, both oral and suppositories, and was up to prednisone 60 mg a day. Surgery was recommended , no biological available for UC at that time. Remicade had just been approved for Crohn’s. In a way I am glad there wasn’t one available for me, as in 2013 I was diagnosed with Stage 1c ovarian cancer. I had surgery, 4 rounds of chemo, and so far so good. I wonder if the newer stuff would have made my cancer more aggressive?. I do pretty well with my pouch. I have to watch what I eat, drink a lot of fluids, had I hospitalization almost 2 yrs ago with a partial bowel obstruction, that scared me, thank goodness for the gastrograffin that pushed everything thru, so no surgery. I have been a hospital pharmacist for 25 of my 40 yrs. I see very few patients treating UC or Crohn’s anymore with oral meds. Our hospital is 190 beds, but we probably have 8 to 10 patients a week coming in for Remicade, Entyvio, Stelaro. Is it just me or these diseases becoming more common.
Vickie - UC diagnosed 2/1999: S-Pouch surgery with temporary ileostomy 4/2/2001, reconnection to internal S pouch 9/11/01.

@Michael posted:

S -

You mention that steroids are doing a number on your bones ... back in the mid 80s, after a couple of years of relatively high dose prednisone, I was dx'd with avascular necrosis in my knees.  Only a matter of time until I needed them scoped to clean them out.

Fast forward to 2009 and I had bilateral replacement at 46 yrs old.  And that was after back surgery (because I walked like John Wayne for years).  And elbow surgery.

Now hindsight is unfair, and there is no definitive proof that it was the prednisone, but I would have pulled the trigger earlier than I did and not subjected my body to the cocktail of medications that I did.

My 32 year ride has not been perfect but the years I lived with active UC were far, far more challenging -- emotionally & physically -- than the last 3 decades.

Last point and certainly an oversimplification, but after being on this site for years and talking to many UC/pouch folks ... my totally unscientific belief is that either you'll respond fairly early to meds or you won't.  Folks will disagree but that search for the panacea begins to preclude 'rational' decision-making imo ... how many enemas?  How many different meds?  How many diets?

Today my joints are good ... I can climb and bike again ... keep the big picture in mind ... it's your life.

- M

Thanks for the response. I think I understand your last point about meds. I was mostly fine on only mesalamine my first 6ish years with UC, although never totally in remission during those years. Then I was fine on only mesalamine with pred once or twice a year for another 5 years. But then in 2018, I got into the never-ending flare. The biologics never worked though. Yeah, I don't feel like trying diets or anymore supplements, and one enema a night is more than enough and not doing the trick anymore. I guess you're right that it becomes kind of insane trying all these medication cocktails for years on end. It certainly is stressing me out to say the least.

Sorry about your knees. That's scary. I got osteoporosis at age 35. I reversed it to osteopenia at 36 last year but it is still borderline and I think I have another stress fracture in my foot now just from walking. I'm depressed about it because I was finally getting back into shape. I just really worry if I can't even safely walk, let alone run. Those are my passions in life.

Thanks again for sharing your experience. Your perspective helps.

Last edited by Sara14
@Vickie posted:

I was diagnosed with UC in 1999 at 42. My mom had been diagnosed in 1982 with UC. At that time she was on azulfidine and prednisone. She made it to 1986 and then had a traditional ileostomy. I only made it 2 yrs before S - pouch surgery in Omaha. They had me on mesalamine, both oral and suppositories, and was up to prednisone 60 mg a day. Surgery was recommended , no biological available for UC at that time. Remicade had just been approved for Crohn’s. In a way I am glad there wasn’t one available for me, as in 2013 I was diagnosed with Stage 1c ovarian cancer. I had surgery, 4 rounds of chemo, and so far so good. I wonder if the newer stuff would have made my cancer more aggressive?. I do pretty well with my pouch. I have to watch what I eat, drink a lot of fluids, had I hospitalization almost 2 yrs ago with a partial bowel obstruction, that scared me, thank goodness for the gastrograffin that pushed everything thru, so no surgery. I have been a hospital pharmacist for 25 of my 40 yrs. I see very few patients treating UC or Crohn’s anymore with oral meds. Our hospital is 190 beds, but we probably have 8 to 10 patients a week coming in for Remicade, Entyvio, Stelaro. Is it just me or these diseases becoming more common.
Vickie - UC diagnosed 2/1999: S-Pouch surgery with temporary ileostomy 4/2/2001, reconnection to internal S pouch 9/11/01.

Thanks, Vickie. Sorry to hear about the cancer. The biologics are crap in my opinion. The efficacy rates are so low, and even when they do work, it seems like for most people, they don't work very long. And of course, they all terrify me. I waited as long as I could before trying biologics and even Imuran. I'm glad they work for some people, but for me, they have been nothing but 2 years of wasted time, money, energy, and stress!

If you see this, do you mind sharing if obstructions are common with the pouch and how do you get one? Eating certain things? I've read a lot about obstructions or blockages with the ileostomy but not as much with the pouch so I'm less familiar with that. I am worried about diet because with UC, I eat whatever I want and I'm vegan but maybe it would be ok. Thanks. By the way, my mom lives in Fremont. I have been to Omaha many times.

Last edited by Sara14
@CTB23 posted:

Hi Sara,

I was diagnosed with moderate to severe pancolitis in April 2015 and after hospitalizations, C-Diff, blood transfusions, TPN for several weeks, shingles while in a nursing facility for rehab and attempting Remicade with limited results, I decided to have surgery, three steps.  It just seemed like one long flare, feeling only slightly better at times.  I was 60 years old for my first surgery, so age was a factor.  I was reasonably healthy, at least healthier than when I had lost 35 lbs.  I had gained back 25 prior to surgery.  I had my first surgery in November 2015 and my last was August 2016.  It will be 5 years since takedown this August.  I am doing pretty well, active, hiking and biking during the warmer months.  During the pandemic, we got a lot of outdoor exercise, winter hikes/walks and snowshoeing.  I have been more active since my j-pouch, also since retirement.  The first 6 months to a year are an adjustment period.  Also, I take Lomotil every evening so I don't have to get up during the night and during the day, usually once if I will be out for a while.  For me it was a no brainer as to getting surgery.  Good luck with your decision.

Thank you! That's great you are able to be so active now. That's reassuring to hear. That's what I want to get back to!

I don’t know if obstructions are common, I’ve only had the one hospitalization and that was a perfect storm of traveling, being kind of dehydrated, and some really fiberous romaine lettuce in a side salad, that I only ate part of at lunch time, by bedtime I could tell nothing was moving along like it should have, and then I had pain, cramping, and nausea. We were in Denver on vacation, so went in to the hospital. They did a CT, saw the blockage, put in a NG to help drain, and gave me gastrograffin thru the NG, this is a dye for X-rays, but also an oily type laxative, within an hour, things were moving. No more lettuce for me. I have had a few near misses with bowel obstructions over the years, and usually, lots of fluid, especially warm fluids, walking, simethicone, and a heating pad have made things better. I suppose as me and my pouch get older, there is more scar tissue, etc. I am pretty careful about what I eat, I eat meat, but it has to be tender and small pieces, try to drink a lot of fluids all day, and have to stay away from anything fiberous or tough.

@Vickie posted:

I don’t know if obstructions are common, I’ve only had the one hospitalization and that was a perfect storm of traveling, being kind of dehydrated, and some really fiberous romaine lettuce in a side salad, that I only ate part of at lunch time, by bedtime I could tell nothing was moving along like it should have, and then I had pain, cramping, and nausea. We were in Denver on vacation, so went in to the hospital. They did a CT, saw the blockage, put in a NG to help drain, and gave me gastrograffin thru the NG, this is a dye for X-rays, but also an oily type laxative, within an hour, things were moving. No more lettuce for me. I have had a few near misses with bowel obstructions over the years, and usually, lots of fluid, especially warm fluids, walking, simethicone, and a heating pad have made things better. I suppose as me and my pouch get older, there is more scar tissue, etc. I am pretty careful about what I eat, I eat meat, but it has to be tender and small pieces, try to drink a lot of fluids all day, and have to stay away from anything fiberous or tough.

Was the lettuce blockage during your J-pouch or ostomy???

Prednisone was still working but my bone density was dropping after years of using it since I didn't respond to any other drug and would flare up immediately if I stopped taking steroids. I was also put in the hospital two years in a row with C-Diff. The complications of prednisone combined with the bouts of C-Diff and enormous risk of colon cancer prompted me to finally act.

Last edited by Aaron S.

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×