Prestomal pain, one ulcer on the stoma itself

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SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 145
   Posted 11/6/2017 2:57 AM (GMT -7)   
Hey all,

I was actually going to post a happy update soon to mark 6mo of health.

Last January I had my pouch removed, however after two months of agony, we realized the fascial defect to accomdate the stoma created in the first operation wasn't big enough so I was reoperated to enlarge it. I have been great since April/May. In June I had an ileoscopy that was spot-clean and was told I'm on the way to being IBD-free.

Last Thursday, I tried the stealth belt for the first time for a race up a 50+ floor skyscraper. Had a great time, and a great race. I ate a late night homemade hummus and carrot dinner, which was fairly fibrous. Next morning I woke up alarmed, wondering if I was/had been obstructed, as there was sharp pain as stool passed, swollen and tender guts, and pressing around the stoma (painfully) helped stool come out. There was also an ulcer that had not yet whitened but was forming on my stoma. My stoma, after measuring 24 hours later, was 1-2cm larger in diameter. After 24 hours, the ulcer had whitened, looking much like one from pictures of an IBD endoscopy.

Honestly, I was just getting used to living my life as a healthy person. Trying not to freak out. Will see a CRS and GI next week.
24 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Supplements, LDN, antibiotics, SCD probiotic yogurt,SCD/Paleo diet,FMT,
Nothing worked. 12/2014 Jpouch w/ temp stoma 4/2015 ileostomy reversal
Jpouch failed due to pouchitis and chronic sepsis. Removed 1/2017; Ostomy revision 3/2017

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10019
   Posted 11/6/2017 6:07 AM (GMT -7)   
Ouch. Yes, that sounds like a partial obstruction you had. Obviously the fibrous food didn't help, but it might not have been that alone: the strenuous race, the late night eating, etc. might have contributed towards disturbing the usual rhythm of your guts. Not to say that you shouldn't do things like skyscraper races in future, but perhaps just eat a bit more cautiously on those days.

As for the ulcer, hopefully it's just a false alarm :/ Could it be a pressure sore from the stealth belt perhaps?
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 145
   Posted 11/6/2017 6:21 AM (GMT -7)   
NCOT:

Yes, it could be a pressure sore from the stealth belt, a minor, but sufficiently traumatic blockage with fibrous food, and my flange becoming too tight for the stoma it was on. EDIT: also I am wondering if the prefilter on the Mio has an edge sharp enough to basically give you a "sharp plastic" cut under the "right" circumstances?

That or C****'s. You probably can't understand the feeling if you started with a Crohn's diagnosis, but with UC there is this continual hope that if worst comes to worst that some kind of resection will "cure" you, even if it's Jpouch removal. The idea of losing that security is frightening of course, especially for someone who has "sacrificed" so much in order to be "cured." I am trying to take it as (hopefully a false alarm and) an opportunity to stop clinging to my sense of "now you're safe."
24 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Supplements, LDN, antibiotics, SCD probiotic yogurt,SCD/Paleo diet,FMT,
Nothing worked. 12/2014 Jpouch w/ temp stoma 4/2015 ileostomy reversal
Jpouch failed due to pouchitis and chronic sepsis. Removed 1/2017; Ostomy revision 3/2017

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10019
   Posted 11/6/2017 10:11 AM (GMT -7)   
@Solomon - Hopefully it's just a pressure sore and nothing else, but it makes sense to get it checked out and put your mind at rest. As for the Crohn's fear, I think I understand. I occasionally find myself wishing I had got UC instead of Crohn's, and then feel guilty about it because I know UC is a horrible disease. I don't think severe UC is any easier to have than severe Crohn's, but at least surgery is a "cure" of sorts. And right now, I would love to have that "cure" to be honest.

Wishing you the best of luck.
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1546
   Posted 11/6/2017 7:03 PM (GMT -7)   
It's nice to see a post from you post pouch removal. I'm glad you finally feel healthy.

Hopefully that is just a pressure ulcer or minor injury. But I totally get your concern about the possibility of Crohns. I went from a Crohns diagnosis to uC back to Crohns. I remember when the doctor told us they thought my diagnosis was UC we were so hopeful. Sad when you hope for UC!

Good luck with your appointments!!! Cheers to good health!
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 145
   Posted 11/16/2017 5:55 AM (GMT -7)   
Hey all:

Good news! I am feeling totally back to normal and the ulcer has healed. Also, I got checked by a CR surgeon who OK'ed me and my stoma. Nobody knows how I injured myself like that, but I would hazard the following are things I could change:

- I rotated my bag (sensura mio) 90 degrees to use with stealth belt for the race. The prefilter edge could have been sharp enough and folded in due to the belt.
- I should cut my flange hole larger.
- I ate a lot of raw carrot too quickly after getting home from the race.

Basically, I mechanically irritated my stoma on the surface and put a lot of pressure on it during the race, and then followed it with a tough meal. Hopefully I can be more careful next time.

It is so nice to share good news. I wish you the same.
24 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Supplements, LDN, antibiotics, SCD probiotic yogurt,SCD/Paleo diet,FMT,
Nothing worked. 12/2014 Jpouch w/ temp stoma 4/2015 ileostomy reversal
Jpouch failed due to pouchitis and chronic sepsis. Removed 1/2017; Ostomy revision 3/2017

NiceCupOfTea
Elite Member


Date Joined Jan 2010
Total Posts : 10019
   Posted 11/16/2017 6:03 AM (GMT -7)   
Good job :p

Apart from your recent scare, are you happy with your decision to go back to having a stoma? A part of me wants to do the same, but I'm worried. Not just about the Crohn's coming back, but about the NHS going down the pan after Brexit - honestly, the UK seems to be in basketcase territory at the moment, but I'm wildly disgressing... :-/
Dx Crohn's in June 2000. (Yay skull)
Tried: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, diets.
1st surgery 20/2/13 - subtotal colectomy with end ileostomy.
2nd surgery 10/7/15 - ileorectal anastomosis. Stoma reversed and ileum connected to the rectum.
Current status: Chronic flare. Do I have any other kind?
Current meds: 50mg 6MP; Entyvio (started 3/11/16)

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1546
   Posted 11/17/2017 3:42 PM (GMT -7)   
Awesome! So glad it was just a blip!
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/15 - colon resection with loop ileostomy
Surgery 12/15 - ostomy closure-disease came right back
Surgery 3/16 - total proctocolectomy - so happy to have my stoma back!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 145
   Posted 11/18/2017 1:25 PM (GMT -7)   
NCOT:

I wish your nation the best. I hear a lot about NHS funding.

Absolutely 120% yes, yes, yes. With the options that exist as of 2017, my stoma is the best that could possibly be for me. My Jpouch was a menace and the concept is a really terrible one regardless. I do not pass up an opportunity to speak about this to any GI I meet or otherwise interested clinician.

I don't need to worry about soiling myself or otherwise being concerned about urgency. I poop where and when I want to! There is no pain (my stoma is a little tight, so I do get some pressure, but this is not a big deal). I do have to go to bathrooms more often as I dislike having the bag significantly full. But these are manageable inconveniences as opposed to pain, drugs, and continuing autoimmunity.

I am a lot safer from IBD now. There is no fecal reservoir for fecal stasis to occur, and there is no more "oh that's just normal inflammation." There is NO inflammation. Instead of having a shoddy replacement (let's face it: surgeon vs. God/millions of years of evolution is no contest) for my colon, I have no replacement. There is no organ expected to perform the role of a fecal reservoir anymore. The brilliance of the stoma is that it does not try to recreate that which was lost: it accepts that loss and that we will be reliant on a device.

It is worth noting that I am doing extremely well with my set-up. Coming on a week with this current bag and it can take a day or two more. Honestly I think that those who go through the pain-staking trial and error process can get the same level of results, especially as products only continue to improve. Logistically I figure out my supply chain for my products and make sure I have them in my work/recreation places as needed. It's just a simple problem to figure out. Psychologically my bag does not affect my self-worth (I think it's kind of cool actually) and I am confident that when I am ready I will find a partner who can accept me with a stoma (otherwise they can shove off smile ). Not everyone feels this way.

My pouch removal surgery was hard and had complications that left me miserable for two months (I don't think mine was usual though). I am glad that as a male my man-parts are fine. I do have some phantom soreness/throbbing a little, but I am generally not even aware of it. In short, I caution you that this is a hard surgery to get through and I as a male put myself through significant risk to do this.
24 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs not successful
Supplements, LDN, antibiotics, SCD probiotic yogurt,SCD/Paleo diet,FMT,
Nothing worked. 12/2014 Jpouch. Jpouch failed due to pouchitis and chronic sepsis. Removed 1/2017; Ostomy revision 3/2017
YOU CAN'T JUST "TRY" THE JPOUCH
Proud, very healthy ostomate who is now living life disease-free
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