HealingWell
Search Close Search
☰

Can't get below 6!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 12/28/2015 2:14 AM (GMT 0)
HI All,

IVIG is still extremely helpful, but I can't get below 6 times a day. I'm having fully formed, normal bm's. But still have urgency and the anxiety that comes along with it. For the most part I don't seem to go after 5 pm which is good. I've now completed 5 Entyvio infusions with no change at all.

Over the last week I'd say that I feel very bloated though, especially after eating. I'm also gaining weight for no apparent reason and it feels very uncomfortable.

I've tested positive for MAP antibodies but my doctor's don't want to add antibiotics as of yet.

Any ideas as to how I can get my number down? I'm grateful I'm not at 15-40 times like I have been for 2 years but I'd like to work (heaven knows, even date!) etc. but if I get urgency, I will have an accident.

I can't afford any probiotics.

Any ideas?
Posted 12/28/2015 2:39 AM (GMT 0)
do you eat starches/resistant starches or chia seeds? these can help form up your stool.
Posted 12/28/2015 3:16 AM (GMT 0)
Can you take mesalamines rectally?
Posted 12/28/2015 5:28 AM (GMT 0)
Sorry, should have said beyond the obvious. Using proctofoam.
Posted 12/28/2015 3:50 PM (GMT 0)
Have you had a flex-sig? Too see if where there is inflammation, seems like you still have IBD issues unless it is IBS.

Maybe you need something that gets higher up like colocort enemas instead of the proctofoam.
Posted 12/28/2015 5:08 PM (GMT 0)
I feel for you! I'm stuck at about 5/day and it's still too much considering I'm in remission with my crohn's colitis, darn IBS is relentless for me....can you try yogurt if you can't afford probiotic pills? How long does your GI say it will take before your meds should kick in? Five infusions isn't a whole lot but I know that each biologic seems to have varying time frames before seeing results.
Posted 12/28/2015 6:29 PM (GMT 0)
Hmm 5 Entyvio infusions down, that's almost 6 months (infusions at week 0, 2, 6, and then after that two 8 week maintenance doses) ... I'd say you've failed entvyio, as you say there's been no improvement on it.

Refresh my memory, did you do at least one of the tnf-alpha biologics (humira, remicade, or simponi)?

You can try steroid enemas, or meslamine enemas.
Posted 12/28/2015 6:49 PM (GMT 0)

U B Tough said...
HI All,


Any ideas as to how I can get my number down? I'm grateful I'm not at 15-40 times like I have been for 2 years but I'd like to work (heaven knows, even date!) etc. but if I get urgency, I will have an accident.

If you went down from 15-40 how can you have failed entyvio unless you were having 5-6 when you started entyvio.
Has there been any improvement in any other symptoms since starting entyvio.
And lastly, I read this somewhere not sure where and I liked it
"you did not fail *instert med* *insert med* failed you!!
Posted 12/29/2015 12:19 AM (GMT 0)
After 5 infusions I'd talk to your doc about a scope. See what's going on. Also if you were at 15-40 BMs a day pre and are down to a half dozen due to entyvio it sounds like maybe you're still heading in the right direction? What were you at after your last induction (3) dose and how does that compare to where you're at today? You say you can't afford probiotics, if my memory serves me correctly there's many people on here that actually make their own to save $$. Something to think about, wish you all the best.
Posted 12/31/2015 2:29 AM (GMT 0)

TheITIS said...
After 5 infusions I'd talk to your doc about a scope. See what's going on. Also if you were at 15-40 BMs a day pre and are down to a half dozen due to entyvio it sounds like maybe you're still heading in the right direction? What were you at after your last induction (3) dose and how does that compare to where you're at today? You say you can't afford probiotics, if my memory serves me correctly there's many people on here that actually make their own to save $$. Something to think about, wish you all the best.

So sorry...to clarify the IVIG got me down from 40 to 6. I was at 6 when I started Entyvio. We were trying that to get me firmly into remission, which to this point hasn't worked.


I've only tried remi....but got PG and switched to IVIG which worked wonders. It still works, but as I said I can't get into remission. I think my docs mentioned Stellara if Entyvio didn't work....although I'm thinking of giving antibiotics a go since I tested positive for MAP antibodies.
Posted 12/31/2015 2:38 AM (GMT 0)
"If you went down from 15-40 how can you have failed entyvio unless you were having 5-6 when you started entyvio."

My bad. IVIG got me to 6. No changed on Entyvio whatsoever.
'
Posted 12/31/2015 12:52 PM (GMT 0)
How long have you been stuck at 6 bms? Healing takes time, often a lot of time, you could try waiting and seeing if you continue to improve. Other biologics are possible (if not already taken) or even a surgery consultation (question and answer session with no obligation) may not be a bad idea.
Posted 12/31/2015 6:04 PM (GMT 0)

iPoop said...
How long have you been stuck at 6 bms? Healing takes time, often a lot of time, you could try waiting and seeing if you continue to improve. Other biologics are possible (if not already taken) or even a surgery consultation (question and answer session with no obligation) may not be a bad idea.

Stuck at 6 since June/July ish, Surgery has been ruled out.
✚ New Topic ✚ Reply