Crohns - Considering ileostomy or Stelara

[brendas]

I have had crohns 20 years.failed all tnf bockers. Imuran.ect. Feel like these drugs are killing me instead ofthe disease itself. I recently ended up with bad blood clot. I feel it was from the cimzia. I feel like I want to go.the ileostomy route to get off all these nasty medications. Or stelara for a trial. Has anyone had good success w permanent ileostomy .thsnks

 

[ronroush7]

Hi. I am on Stelara currently. I had my doubts about it. They gave me a calprotectin and blood test and urine test and everything seemed to turn out fine. They put me on levsin and for the most part my symptoms seemed to calm down. They want to repeat the tests again.

2

 

[DJW]

Hi brendas,

I got my permanent ileostomy 30 years ago. Not of the treatments worked and I did eventually get a 20 year remission with no meds.
That said, a permanent ileostomy is no guarantee you won't need meds again. Unfortunately it isn't a cure for Crohn's.

My ileostomy gave me my life back; for that I'm grateful.

Sending you my support.

 

[Tuff]

IBD patients have a threefold increased risk of developing DVT or PE. I almost died in 2010 from a pulmonary embolism. It's not necessarily any medication you are taking, but the disease itself.

 

[fuzzy butterfly]

Hi i had resection n ileostomy for a year . It give me my life back n all is good so far. I delevoped PE,s after 1st op n was put on warfrin for a few mths. Yes tuff is right it can just be part of the crohns itself. Best of luck ☺

 

[brendas]

Hi brendas,

I got my permanent ileostomy 30 years ago. Not of the treatments worked and I did eventually get a 20 year remission with no meds.
That said, a permanent ileostomy is no guarantee you won't need meds again. Unfortunately it isn't a cure for Crohn's.

My ileostomy gave me my life back; for that I'm grateful.

Sending you my support.

My doctor keeps telling me I need to be on tnf blockers . I'd rather live with a bag and get off all these meds. Thanks for sharing where was your crohns?

 

[fuzzy butterfly]

Hi Brendas mine was in the ileum . Dx by ct scan. ☺

 

[brendas]

Ok that is where mine is. R u on treatment now ?

 

[fuzzy butterfly]

Hi im on omeprazole to protect my stomach from acid. Painkillers for joint pain which is constant but dealable with . X

 

[ronroush7]

IBD patients have a threefold increased risk of developing DVT or PE. I almost died in 2010 from a pulmonary embolism. It's not necessarily any medication you are taking, but the disease itself.

Can I ask what DVT is?

 

[Clash]

ronroush7 DVT is deep vein thrombosis. Those with CD can be at a higher risk.So basically DVT is a blood clot.

 

[ronroush7]

Okay, either before or after my resection I had a lot of swelling in my legs. Any relation?

 

[Clash]

If you have a DVT then they would place you on warafin or another type of blood thinning med.

When you come out of surgery They will sometimes place compression air type things on your legs to keep blood moving.

I couldn't tell you what your leg swelling origin could be from, with both legs it could have been poor circulation or other things. If they thought you had a DVT they would've done imaging or other tests to determine. They some times look at an elevated d dimer result on blood tests to determine blood clots. Sorry I can't be more helpful but I'm not extremely knowledgeable in this area.

 

[ronroush7]

No problem.

 

[ronroush7]

Clash, my memory was foggy at first but now I remember when I was in the hospital they used a machine to keep down the swelling.

 

[Clash]

I don't want to derail the OPs original post any further ronroush7 but if you have more questions you could make your own thread maybe in surgery if that is when you experienced the leg swelling.

brendas, has your GI offered an ileostomy? Have you looked into entyvio, not a tnf blocker. I hope you find a way to deep stable remission soon with whatever path you choose. Hugs

 

[brendas]

No he is against illeostomy. Says that's not the answer. I'm sik all the meds my body hates them I have not tried that entyvio yet.

 

[brendas]

Thanks

 

[Clash]

I can understand your frustration of nothing has worked so far. My son had an ileocecectomy last year because high dose remicade and mtx were unable to completely clear a chronic area of inflammation at the ileocecal valve. My son was asymptomatic from the active disease but unable to gain weight and the narrowing at the ic valve was concerning.

Our hope was that after surgery the remicade could control everything (it had been effective with symptoms and other areas in the TI excluding the area at the ic valve). Unfortunately, when he started remicade back after surgery he had developed antibodies. We moved to humira and three months in his colonoscopy showed visually pristine bowels. But, the biopsies showed inflammation at the cellular level present at the surgical site. He'll have another scope done in December and we're hoping for the best.

 

[DJW]

My doctor keeps telling me I need to be on tnf blockers . I'd rather live with a bag and get off all these meds. Thanks for sharing where was your crohns?

At its worst it was pretty much everywhere. I don't have much intestine left.
I am now on Remicade after my last extended flare with complications and surgery.
I'm doing very well on it. I wish it was am option 35+ years ago. Crohn's complications are horrible.

 

[fuzzy butterfly]

I can understand your frustration of nothing has worked so far. My son had an ileocecectomy last year because high dose remicade and mtx were unable to completely clear a chronic area of inflammation at the ileocecal valve. My son was asymptomatic from the active disease but unable to gain weight and the narrowing at the ic valve was concerning.

Our hope was that after surgery the remicade could control everything (it had been effective with symptoms and other areas in the TI excluding the area at the ic valve). Unfortunately, when he started remicade back after surgery he had developed antibodies. We moved to humira and three months in his colonoscopy showed visually pristine bowels. But, the biopsies showed inflammation at the cellular level present at the surgical site. He'll have another scope done in December and we're hoping for the best.

Wishing you all the very best for Dec appointment

 

[fuzzy butterfly]

At its worst it was pretty much everywhere. I don't have much intestine left.
I am now on Remicade after my last extended flare with complications and surgery.
I'm doing very well on it. I wish it was am option 35+ years ago. Crohn's complications are horrible.

Oh djw i bet you do. Hope it continues to keep well

 

[fuzzy butterfly]

No he is against illeostomy. Says that's not the answer. I'm sik all the meds my body hates them I have not tried that entyvio yet.

Well aint that typical tell you what next time you see him ask if he would swap places n walk in your shoes. If he says no, then say right well i want the ileostomy then. Coz untill you are goin through what i am dont tell me whats not the answer !! Im going through the pain of this not YOU !!. I have actualy done pretty much the same thing to get my ileostmy done. Best wishes

 

[brendas]

I don't want to derail the OPs original post any further ronroush7 but if you have more questions you could make your own thread maybe in surgery if that is when you experienced the leg swelling.

brendas, has your GI offered an ileostomy? Have you looked into entyvio, not a tnf blocker. I hope you find a way to deep stable remission soon with whatever path you choose. Hugs

No he is against the ieostomy.he said entyvio is next. I see it can cause deadly brain disease. My luck that would be me thsnks response

 

[brendas]

I can understand your frustration of nothing has worked so far. My son had an ileocecectomy last year because high dose remicade and mtx were unable to completely clear a chronic area of inflammation at the ileocecal valve. My son was asymptomatic from the active disease but unable to gain weight and the narrowing at the ic valve was concerning.

Our hope was that after surgery the remicade could control everything (it had been effective with symptoms and other areas in the TI excluding the area at the ic valve). Unfortunately, when he started remicade back after surgery he had developed antibodies. We moved to humira and three months in his colonoscopy showed visually pristine bowels. But, the biopsies showed inflammation at the cellular level present at the surgical site. He'll have another scope done in December and we're hoping for the best.

Does he still have the illeostomy?

 

[brendas]

Oh djw i bet you do. Hope it continues to keep well

Thanku... I have had crohns 20 years. Two major surgeries. I'm think an illeostomy for at least a while sounds good to me. Anyone heard of stelera?