Share Facebook
Crohn's Disease Forum » Parents of Kids with IBD » Rectal cuff inflammation


07-04-2014, 09:35 AM   #1
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
Rectal cuff inflammation

So what meds stop inflammation in the rectum systemically? I am thinking none beyond prednisone (whcih DD is already refractory). just treating a rectal stump on an ostomate? Starting to stress out a bit. Anucort suppositories are not helping. So I am guessing her doctor will want to try Canasa... Which I believe made her worse before to the point that she had rectal prolapse.

My current search is to find SCFA (Short Chain Fatty Acid) suppositories bc she has such a little amount of cuff to treat the enemas cannot be retained. Figured I would pick your brains before giving up all hope.

Her doctors also are leaning in the direction of Tacro Suppositories as well.

The bleeding is visually minimal, but according to last scope cuff was friable so that is not good.

Any experience or opinions welcome! Holistic included.
07-04-2014, 09:50 AM   #2
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
Hugs
DS did not have much luck at all with the creams and suppositories - including canasa etc...
Have they tried iv solumedrol ?
One or two doses to calm things down?
Is she on any maintence meds ( I forget -I know the uc vs crohn's thing was up in the air at one point)?
If not what about stelera /humira /Mtx/6-mp since she is older now and I assume can swallow pills ..

The only thing that helped DS was remicade/humira and he still manages to get bouts of rectal inflammation .

Does Cincy have any ideas ?
__________________
DS - -Crohn's -Stelara
07-04-2014, 10:03 AM   #3
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
No she is not on any maintenance medication prescribed by GI. Still no true tell tell signs of CD, she is technically IC now. Though we have recently started LDN per her new MD whom is also doing allergy testing. My fear is to start an immunosuppressant and it will interfere with the LDN. She has only been on it for 2 weeks. We also recently did a complete nutritional panel to check all of her vitamins and minerals to see if there is anything there that might be causing this to occur. My guess is it is Diversionary Colitis, but no chance of restoring fecal stream.

A bit paranoid to start any of them as well due to PSC being so up in the air (the effects of the meds staging her liver issues) and her more recent Dx of a incomplete pancreas Divisum scares me from the Canasa being it can cause pancreatitis. Why can nothing be easy for her?
07-04-2014, 10:08 AM   #4
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
I beleive the last time she was on IV Solumedrol it did nothing and that is when we jumped to Remicade.
07-04-2014, 10:43 AM   #5
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
VTfamily (Gus's mom) said something about flushing it daily saline( pedialyte) to prevent that I think not sure---
make sure a pediatric allergist is doing the allergy testing - IgG testing is not recommended at all .

http://drrobertwood.com/debunking-alternative.shtml


also keep in mind meds that did not work before - may work now since her overall system is in a better place .
07-04-2014, 10:47 AM   #6
my little penguin
Forum Monitor
 
Join Date: Apr 2012

My Support Groups:
http://www.crohnsforum.com/showthread.php?t=64845

thread with the flushing
malgrave
07-06-2014, 09:56 PM   #7
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Sorry to hear you guys are now going through this! I hope the LDN really works for her and is the last treatment you needs! keeping my fingers crossed for her!
__________________

Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
07-07-2014, 11:31 AM   #8
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
How long did LDN take to help Caitlyn?
07-08-2014, 04:19 PM   #9
kimmidwife
Forum Monitor
 
kimmidwife's Avatar
Sorry I didn't get back on the forum last night. I found this amazing homeschool curriculum sale and there was over 30 pages of items on sale. I spent hours and hours and still didn't finish it.
The LDN took about six weeks to start showing improvement. By four months she was in clinical remission. I am praying so hard it is your miracle!
09-10-2014, 01:16 AM   #10
vtfamily
Senior Member
 
vtfamily's Avatar
 
Join Date: Mar 2013
Location: Palmdale, California

My Support Groups:
I'm so sorry you guys are having such a tough time. I agree that there are definitely times when I have wished that the normal/easy would work for us too.

When Gus was on the IV TPN, we did flush the IV lines with sailene to keep them flowing properly because he was only running the TPN overnight, not 24/7.

Gus did have rectal inflammation some time ago. His doctor prescribed a suppository, I can't recall the name. It started with an "M." I know that isn't much. It was a series of 10 daily doses. It worked like a charm. I'll let you know if I find the name.

Best wishes to you.
Cheryl VT
09-10-2014, 08:38 AM   #11
Brian'sMom
Senior Member
 
Brian'sMom's Avatar
 
Join Date: Dec 2010
Location: Kansas

My Support Groups:
I soooooo know your frustrations. The rectum is a total Game Changer. We still have the whole rectum... they haven't done surgery because of the rectal cuff thing. If they do surgery they are planning to remove the whole thing along with anus. I will be watching this thread too. We have recently started Vedolizumab and are doing cortafoam enemas.
Cheryl, If you come up with the name...Post away
__________________
Kathy, Mom of 14 yr old Brian
symptoms 2005, official dx 6/2010

Praying for Remission
Vedolizumab 8-8-14
Ileostomy 3/22/14
Multivitamin,Iron,Vit D

Total EEN 12-10-13 to:TPN 1-29-14 - 4-2-14
Tried:Azathioprine,Pred,Pentasa,Cimzia Bi weekly & MTX 9/2013 to 8/2014, Humira 1/2011-9/2013, w/oral mtx 5 mos in 2013. Remicade: Had allergic reaction Jan 2011 Built up antibodies by 3rd infusion.
Has done round of Flagyl due to abcess 12/10 and 10-21-13 which helped both heal quickly.
09-10-2014, 09:03 PM   #12
QueenGothel
Senior Member
 
QueenGothel's Avatar
 
Join Date: Oct 2011
Location: Michigan, USA
I found something that is working but unfortunately they are supposed to be continued long term, compounded 1mg Budesonide Suppositories. I think he should ween her because it has been over a month. Being they are compounded I have the used molds so I am hoping to find another recipe.
Reply

Crohn's Disease Forum » Parents of Kids with IBD » Rectal cuff inflammation
Thread Tools


All times are GMT -5. The time now is 10:39 PM.
Copyright 2006-2017 Crohnsforum.com