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Ileostomy and crohns


Raine
(@raine)
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So, I go in Wednesday to have the rest of my colon removed.  My recent colonoscopy showed Stelara isn't working, been on it every 4 weeks for 6 months.  And I've failed all available meds.  

Who here has an ileo with crohns and are you crohns free without meds?  My biggest fear is it will show up in the rest of my gi tract and the only treatment will be steroids.  GI doc says there is only a 10% chance but I'm stll concerned.

Raine


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john68
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Hi Raine, I am a crohns patient and have an ileo . I can honestly say I have never had to be on any medication since my surgery. The very for Wednesday 👍

ileostomy 31st August 1994 for Crohns


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Raine
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Thanks John,  My history of being a " problem child" just has me concerned about the future.

Raine


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SqueakyandLiza
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Hi Raine,

I too have Crohn's and an ileostomy.  I still have significant Crohn's in my rectal stump, and the doctor wants to remove it.  I am seeking a second opinion before they do that.  I have been taking Humira, and it doesn't seem to be helping.  The doctor has increased my dose to weekly, instead of bi-weekly with the hope that it will help get the Crohn's under control.  I hope that the surgery works for you and that you can stop with any medication.  

-Liza
Ileostomy 6/18/2018
“May your day be bright and your bag be light.”


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Lynne
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Raine, I have Crohns and was on antibiotics almost constantly to treat it since getting a jpouch 30 years ago, but the antibiotics pretty much kept things in check most of that time.  My Crohns was located periannally and a little in the distal jpouch (at the anastomosis w anal canal)- and fistulas/abscesses got bad so I chose to have an ileostomy 4 months ago.  I am not on any meds and feel the healthiest I have felt in many many years.  My periannal issues have all resolved, my recent calprotectin was zero and my CRP went from >100 to 11 (almost normal).  I am being careful with what I eat - cut out all grains/gluten and extra sugar/nothing processed, lots of well cooked veggies, meat/fish/eggs, and sprouted nut butters among others.  Doing lots of supportive mucosal supplements and probiotics and eating a lot of fermented foods.  Of course there is no guarantee things won't pop up, but I believe it is possible.  Eric may chime in - I know he also is not on meds after his surgeries.  Good luck - I hope your surgery Wednesday brings you relief and good health!


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LK
 LK
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I can only say the best of all your wishes Raine. 

If your in doubt, you can postpone your surgery untill your all sure of what you want to do. No one would criticize that,  its your  right to be sure... 

Linda

Linda


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Raine
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Thanks for all your responses and easing my fears.  I guess there will always be that nagging feeling in the back of my mind about crohns recurring.  Just have to remember how much better I felt after having the lower part of colon and rectum removed.  Now to wait on the hospital to call and tell me when to be there in the morning.

Raine


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VeganOstomy
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@raine

What part of your GI did Crohn's affect? Was it only your colon? My disease was isolated to my colon and rectum, even though I had other symptoms elsewhere, and my surgeon said that the chance of it coming back in the next 20 years is very, very low (less than 10%). 

Because meds didn't work for me before surgery, I really have nothing to take and my only course of action is to get in touch with my GI if I have any symptoms that worry me. 

Good luck with your recovery! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Raine
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@veganostomy My crohns is/ was mainly in my colon and rectum.  However I was dx with active disease in my esophagus about 15 years ago.  I have to say I won't be upset about no more meds.  It's encouraging to know others in the same situation have had good results.

 

Raine


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LK
 LK
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@raine... Hello!  I've been wondering how you are doing and if your surgery even went ahead

with this Covid19 going on.  Can you fill us in when your up to it please? I hope you and your 

family are all well.  

Linda

Linda


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Raine
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@LK Yes, my surgery went as planned.  They did discharge me after 2 days though.  The ileo was challenging at first with leaking daily,  29 staples and a hole in belly where colostomy was located make my body look like a war zone.  But I'm finally pain free and feeling human again.  The nurses are coming daily to change packing-- they are the best! One of them is their go to ostomy expert and she switched me to convex which has been a life saver.  Now I just have to wait and see if my follow up and staple removal go as planned. 

Raine


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Dona
 Dona
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Hi Raine,

Happy to hear the surgery went well. And, its good you are home after only two days in the hospital. I think I did three nights and couldn't wait to get out of there. And now in this strange new time , I'm sure its safer for you too.

Sounds like you are making a good adjustment to the new you. Great you are feeling better.

Keep healing! And YES! Thanks to all the great nurses and home care help.

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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kedikat
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I had a colectomy over 30 years ago. That is where the small intestine is attached to a small remainder of the rectum. So I had a small reservoir of storage left. Worked for all those years. A few weeks ago I finally had to get an ileostomy. The attachment point was too constricted. So for 30 plus years the Crohn's did not really progress into my small intestine. The surgeon tells me I am still free of it in the small intestine.

So there is hope that it will not be an ongoing problem after it is removed.


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sjlovestosing
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@raine

So glad to hear that you are pain free! Take care.  😊

Stella


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VeganOstomy
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Posted by: @kedikat

So for 30 plus years the Crohn's did not really progress into my small intestine.

That's really encouraging to hear, despite the need for additional surgery. Best of luck with your recovery!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Raine
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Since this post was resurrected I thought I'd update you on me.  I recently had another ileostomy and my small intestine looks good!  Bad news is Crohn's is showing up in my esophagus again.  My gi wasn't convinced until he did the endo.  And now I'm on a steroid compound for 3 months and then another endo to see it the progress. 

 

Raine


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