Hi, @johnvancott - welcome to Mayo Clinic Connect. Just wanted to clarify your questions to make sure they got to the right member. Were you addressing @genabarrick (when you said Who told you that? What tests have you had?)? @genabarrick was the originator of this discussion who mentioned she was told she had a growth on her intestine.
@aktink - I'm really sorry to hear your heart is so sad. Do keep the hope. I'm hoping many here will also have some warm, comforting words and tips for you.
johnvancott - do you also have a diagnosis of Crohn's? If so, when were you diagnosed, and what symptoms have been bothering you the most?
IBD for 39 years. UC from 1987-1996, jpouch - large colon removed in 1996, Crohns from 2002-present. Horribly sick the first 9 years, since jpouch surgery I have had no hospital stays, and only mild or remission with meds. I am currently transitioning to Tremfya while still on my oral meds - azathioprine, & a cipro/flagyl rotation, I also take loperamide, metamucil powder, wafers or capsules to thicken up bm's.
@lisalucier Thanks for asking, I really don't notice much difference between the Tremfya and my previous azathioprine & antibiotics, but I had been on that regimen for probably 15+ years. My Dr thought maybe this would help heal any inflammation that may contribute to my nightly fecal incontinence, but I am still having issues nightly. I go back to Mayo in April for another pouch scope, possible CT scan & PFT. I had 3 procedures in Aug and they found my sphincter muscles are weak and there is atrophy in the cuff area, not sure if it can be saved. I am keeping my fingers crossed that something can be done other than returning to a bag. It is what it is, my pouch is almost 30 years old, I just need to weigh the options of either.
I have Crohn’s Disease along with really bad case of diverticulosis. Right now I’m off of biologics due to having too much illness—Influenza A, bibasilar pneumonia, and pneumonia in the right base— within about 18 months. Entyvio worked well for about 5 years. Then I went on Stelara which almost did me in. My main complaints now are pain in lower left quadrant almost everyday, chronic constipation, and chronic fatigue. My GI doctor put me on Trulance, but its action is unpredictable. I really don’t know where to turn to next. My GI doctor doesn’t seem to be impressed at all, but I know I felt great when I was on Entyvio. It’s very frustrating. I would love to travel again.
Hi, @skypledger - You'd mentioned before in talking about your Crohn's and diverticulosis that you would love to travel again. That sounds really nice. Are you envisioning a time right now where your body would be up to that?
@lisalucier Thanks for asking, I really don't notice much difference between the Tremfya and my previous azathioprine & antibiotics, but I had been on that regimen for probably 15+ years. My Dr thought maybe this would help heal any inflammation that may contribute to my nightly fecal incontinence, but I am still having issues nightly. I go back to Mayo in April for another pouch scope, possible CT scan & PFT. I had 3 procedures in Aug and they found my sphincter muscles are weak and there is atrophy in the cuff area, not sure if it can be saved. I am keeping my fingers crossed that something can be done other than returning to a bag. It is what it is, my pouch is almost 30 years old, I just need to weigh the options of either.
Hi, @janspons - sorry to hear you are still having fecal incontinence issues nightly. I had that happen twice during my time taking semaglutide with terrible diarrhea that got so bad it ended up in my bed. I found this pretty humiliating and hard to deal with psychologically. I finally had to get some bed pads so I didn't have terrible anxiety about it happening again when I fell asleep.
How are you doing psychologically with the fecal incontinence continuing to bother you?
Hi, @skypledger - You'd mentioned before in talking about your Crohn's and diverticulosis that you would love to travel again. That sounds really nice. Are you envisioning a time right now where your body would be up to that?
@lisalucier, yes, we are in Las Vegas now for 6 days. I was doing well until today even though I’ve been taking Trulance and MiraLAX. I’ve been walking and shopping and being very careful when dining. I’ve walked quite a bit. I’m experiencing constipation and abdominal distention. Hopefully this resolves soon since we have dinner reservations at a great restaurant.
Hi, @janspons - sorry to hear you are still having fecal incontinence issues nightly. I had that happen twice during my time taking semaglutide with terrible diarrhea that got so bad it ended up in my bed. I found this pretty humiliating and hard to deal with psychologically. I finally had to get some bed pads so I didn't have terrible anxiety about it happening again when I fell asleep.
How are you doing psychologically with the fecal incontinence continuing to bother you?
@lisalucier it is very frustrating & depressing, I've had this going on almost nightly for over 2 years now. I wear pantiliners everyday "just in case". Usually some sort of incontinence underwear at night. I have anywhere from 1 - 4 accidents per night, usually not a lot but any is too many. I am kinda starting to weigh my options, continue this way or maybe go the ileostomy route. They want me to try pelvic floor therapy first & a CT scan i think was also ordered.
@lisalucier it is very frustrating & depressing, I've had this going on almost nightly for over 2 years now. I wear pantiliners everyday "just in case". Usually some sort of incontinence underwear at night. I have anywhere from 1 - 4 accidents per night, usually not a lot but any is too many. I am kinda starting to weigh my options, continue this way or maybe go the ileostomy route. They want me to try pelvic floor therapy first & a CT scan i think was also ordered.
Connect
Connect
Like
Helpful
Hug
My heart is so sad, trying to keep hope and faith for all of us.
-
Like -
Helpful -
Hug
1 ReactionWho told you that? What tests have you had?
Hi, @johnvancott - welcome to Mayo Clinic Connect. Just wanted to clarify your questions to make sure they got to the right member. Were you addressing @genabarrick (when you said Who told you that? What tests have you had?)? @genabarrick was the originator of this discussion who mentioned she was told she had a growth on her intestine.
@aktink - I'm really sorry to hear your heart is so sad. Do keep the hope. I'm hoping many here will also have some warm, comforting words and tips for you.
johnvancott - do you also have a diagnosis of Crohn's? If so, when were you diagnosed, and what symptoms have been bothering you the most?
Hi @janspons - how is your medication routine including the guselkumab (Tremfaya) going for you?
-
Like -
Helpful -
Hug
1 Reaction@lisalucier Thanks for asking, I really don't notice much difference between the Tremfya and my previous azathioprine & antibiotics, but I had been on that regimen for probably 15+ years. My Dr thought maybe this would help heal any inflammation that may contribute to my nightly fecal incontinence, but I am still having issues nightly. I go back to Mayo in April for another pouch scope, possible CT scan & PFT. I had 3 procedures in Aug and they found my sphincter muscles are weak and there is atrophy in the cuff area, not sure if it can be saved. I am keeping my fingers crossed that something can be done other than returning to a bag. It is what it is, my pouch is almost 30 years old, I just need to weigh the options of either.
-
Like -
Helpful -
Hug
2 ReactionsHi, @skypledger - You'd mentioned before in talking about your Crohn's and diverticulosis that you would love to travel again. That sounds really nice. Are you envisioning a time right now where your body would be up to that?
-
Like -
Helpful -
Hug
1 ReactionHi, @janspons - sorry to hear you are still having fecal incontinence issues nightly. I had that happen twice during my time taking semaglutide with terrible diarrhea that got so bad it ended up in my bed. I found this pretty humiliating and hard to deal with psychologically. I finally had to get some bed pads so I didn't have terrible anxiety about it happening again when I fell asleep.
How are you doing psychologically with the fecal incontinence continuing to bother you?
-
Like -
Helpful -
Hug
1 Reaction@lisalucier, yes, we are in Las Vegas now for 6 days. I was doing well until today even though I’ve been taking Trulance and MiraLAX. I’ve been walking and shopping and being very careful when dining. I’ve walked quite a bit. I’m experiencing constipation and abdominal distention. Hopefully this resolves soon since we have dinner reservations at a great restaurant.
-
Like -
Helpful -
Hug
3 Reactions@lisalucier it is very frustrating & depressing, I've had this going on almost nightly for over 2 years now. I wear pantiliners everyday "just in case". Usually some sort of incontinence underwear at night. I have anywhere from 1 - 4 accidents per night, usually not a lot but any is too many. I am kinda starting to weigh my options, continue this way or maybe go the ileostomy route. They want me to try pelvic floor therapy first & a CT scan i think was also ordered.
-
Like -
Helpful -
Hug
1 Reaction@janspons - do you anticipate the pelvic for therapy could help you?