Crohn's Disease Forum » Surgery » Stoma Subforum » Anyone still have their rectum after ileostomy surgery?


12-13-2015, 08:30 PM   #1
SupportiveMom
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Anyone still have their rectum after ileostomy surgery?

So my kid had surgery to remove her colon in July. Surgeon left the rectum, even though it was diseased in hopes that once she had a stoma and no activity in her rectum it would heal. We were told it should stop bleeding after 8 to 12 weeks.

So now it's 5 months and she is still bleeding. She is on no meds. I'm guessing this will mean she will need to go back on one. MRI Thursday so I suspect they will see inflammation inflammation then.

Anyone else have this issue?

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Mom of 16 yr. girl w/Indeter.Colitis Sep. 2012(age 11) Nov.2012 Crohn's Sep. 2014 Crohn's Colitis, UC Nov 2015, Crohn's Feb. 2016

Ileostomy surgery July 2015

Current Meds: None!
Previous Meds: Humira, Remicade, Methotrexate, Cipro, Flagyl, Zofran, Cortifoam, 5-ASA suppository, Questran, Mezavant, EEN (Peptamen Jr. 1.5) by NG tube, Antibiotic Cocktail (Vancomycin, Metronidazole & Doxycycline), Simponi, Prevacid, Imuran, prednisone
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12-14-2015, 05:56 PM   #2
boussole
 
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Hi Supportivemom,

I'm sad to hear your kid is still bleeding. I remember we both had our surgery in July this summer.
My GI remove my rectum and at that moment I ask her if she always remove it, and she said she pretty much always remove the rectum if there is inflammation there.

I hope some meds can help your kid and she will not have to go through another surgery.

all the best for you
12-14-2015, 06:14 PM   #3
SupportiveMom
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Her GI didn't want to remove it in case the pathology allowed her to keep it (UC versus Crohns). It baffled me considering that has always been the worst part. I think everyone was hoping it could just heal IF it didn't have anytHon

12-14-2015, 06:17 PM   #4
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Sorry hit reply too fast. I think everyone was hoping IF it didn't have anything really passing through it could heal. 5 months and no healing on its own tells me it won't do it all by itself.

How did every thing go since your surgery? Other than this issue it has been fantastic for my kid. Prefers the bag anyday compared to the pain of before!

12-14-2015, 07:09 PM   #5
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Have you seen her GI lately? What did he/she say about it? Any meds in mind?
Is there any pain or ''just'' blood?

When I used Remicade, a woman had her colon removed and she had bleeding in her rectum for almost one year after the surgery, but it finally healed and she wasa disease free for 2 years!!

I'm going so well since the surgery... I've never felt so good in years. My disease was mostly in the rectum, but as it's Crohns for me, my GI decided to remove the rectum so I wouldn't have to go trough another surgery.
12-15-2015, 07:29 AM   #6
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We saw the GI at 3 months post op. She said it should reduce and stop soon. We don't see her again until April. We see the surgeon in January so I will be asking him. She has no pain really, just blood. She isn't so thrilled to bring it up with the doc I think because she knows it could mean either steroid enemas or meds. Neither one she wants.

12-15-2015, 04:10 PM   #7
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I was also a teenager when I was really sick and I remember I used to hide things to my GI so I wouldn't have to do a colonoscopy and take more meds. But it only got me more sick... I hope she'll tell her doc and get what's the best for her health
12-15-2015, 05:44 PM   #8
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Thanks...I remember being a teenager and thinking I could handle it all..comes back at you!

02-05-2018, 05:07 AM   #9
njyupyup61
 
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I feel your pain and anguish. its just a "crap shoot", no pun intended . it's really the drs call if he believed reconnecting was possible.

I am middle aged with the same thing your kid is going through. GI removed entire colon saying it was so diseased, nothing would heal it. I was never told I had Crohn's in the rectum throughout all my colonscopies.. 25 yrs worth them. inflammation was deep in the ascending colon where the inflammation was. I had no choice but to have the colon removed and about 3 to 6 inches of stump rectum left. Am 15 months post op. been evacuating mucus mixed with blood from day one. Drs said it will subside. it hasn't and there it is.. Crohn's in rectum. next thing is suppositories, then there is a foam, and I guess lastly surgery to remove the rectum. I wonder where does the mucus go if no more hole to drain? absorbs through skin? yuck. that cant be healthy.

The treatment of steroids would likely be through the rectum. your kid wont face the adverse side effects that way. its directly into the rectum, not taken orally. but this is just my guess. been on prednisone half my life. not anymore. just getting it in the rear now..through a suppository. which really beats surgery any day. keep us posted. I'd like to hear what's next from you. thanks.
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