Surgery here I come (UPDATED 1 YR+ JPOUCH TAKEDOWN)

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cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1495
   Posted 11/1/2016 6:07 PM (GMT -6)   
I wish you the best with your next surgery.

My situation is a little different than yours since I didn't have a jpouch bc of Crohns but after a failed attempt at reconnect I went back to an ileostomy. It was a really hard surgery for me but it was totally worth it. 8 months later I'm healthy and really happy with my decision. I hope you get a similar outcome and finally peace from this disease!
Diagnosed with Crohn's 1998 and PSC 2015

Surgery 10/6/2015 - colon resection with loop ileostomy
Surgery 12/18/2015 - ostomy closure-disease came right back
Surgery 3/3/2016 - total proctocolectomy - so happy to have my stoma back!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 136
   Posted 11/3/2016 2:19 PM (GMT -6)   
Sorry for delay in posting.

I think budesonide is starting to improve my symptoms, for which I'm grateful. Shen said I can stay on it pretty much until op.

How things are:
I've been rising from bed on average three times a night for the bathroom. During the day, I need to go about every two hours. Since Shen's "fix" I think the small amounts of blood I had are gone and there is less mucus. Still dealing with some incontinence. Pouch spasms and cramps that sometimes aren't relieved by BM's can get very debilitating. I'm fatigued very very often as a result of all this and am quite a homebody.

NCOT:
I hope things go well for both of us. Personally I am not willing to try anything new. I'm fine with a stoma and ostomy bag. I will wear a bag for the rest of my life. I will not do anything that puts my health or quality of life at risk just to avoid wearing the bag. If I had done things that way at the beginning these past two years of my life would have been much better.

Thanks for the well wishes. I scheduled today and am since feeling a bit antsy and nauseous. The first surgery was so harrowing that my vitals spiked when I went back into the same hospital. This is scary, but when I logically process my situation, what I'm doing seems like the best choice.
22 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

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9636
   Posted 11/3/2016 5:27 PM (GMT -6)   
Solomon - My symptoms are similar to yours, but not quite as bad - I think the 6MP has helped. At one point I was getting up 3-5x every single night, but now that only happens occasionally on a bad night. Although I very rarely sleep straight through either; am usually up a couple of times still :(

I understand about not wanting to try anything new. I have a weird fear about bags. Not about wearing them (which towards the end of my 2-year stint with the stoma, I couldn't have cared less about), but about running out of them. My GP has told me there wouldn't be an issue with supplying bags, but even if she's right now, what if things change in the future? What if the NHS collapses or becomes privatised? It's an ongoing fear that I can't seem to shake off, even though I am most likely worrying about something that's not going to happen.

But that said, I wouldn't let irrational fears put me off from having a stoma if that was the only option to restore my health and get rid of the Crohn's.

What date is your surgery set for? Are you going to have your j-pouch excised? Wishing you the very best of luck when you do have your surgery: I hope you gain permanent remission from this crap. There is a high chance that you will.
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; waiting for funding for Entyvio

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 136
   Posted 1/10/2017 11:30 AM (GMT -6)   
Hey all,

I will be having pouch removal next Thursday at Cleveland Clinic Ohio with Dr. Ashburn. I have set my anxieties aside as I feel very strongly that with the jpouch I will not have a stable, good quality of life and that I have considered my decision very carefully. The odds are that this will go well and I pray that I can have a normal ostomate's life.

Long term it is scary knowing that the bag will be 100% permanent, but I have overcome so much already. My gut says that a stoma will not be a *dis*ability, but rather an *en*ability (I made up that word). My brain says to follow that feeling.

I so wish that I hadn't made this mistake of the jpouch, but that is so much of life. Please wish (and pray, if that is your persuasion) for a successful surgery, without (significant or long-term) complications, and with an easy recovery!

I will update you all.

cupcakespinkgal
Veteran Member


Date Joined Jun 2010
Total Posts : 1495
   Posted 1/10/2017 12:24 PM (GMT -6)   
I will be thinking about you and pray for an uneventful surgery and great outcome. I'm a little different bc I didn't have a pouch to remove but I know your feelings of what if or regrets. I almost canceled my takedown surgery post resection twice. So wish I had but in the end it is part of the journey and probably makes me more appreciative of my ostomy. For me going back to an ostomy and making it permanent was the right decision and my QOL is so much better.

It's good to listen to your gut smile and trust your instincts. Good luck!
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!

Michelejc
Forum Moderator


Date Joined Jan 2011
Total Posts : 1830
   Posted 1/10/2017 1:29 PM (GMT -6)   
Good luck!!
MODERATOR-UC FORUM
58, female - diagnosed with moderately severe proctitis/mild diverticulosis
Lialda - one a day
6mp - 50 miligrams
VSL#3 DS - 1 pack a day or as needed
Zocor - 40 mg
Calcium with Vitamin D
Glucosamine
Magnesium
B-Complex

"Fly under the radar" - Dad -

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14887
   Posted 1/10/2017 7:32 PM (GMT -6)   
Wow, that is great news. I know you've been unhappy for a long time. I am sure everything will go flawlessly and you will live a much fuller, better life after surgery. Please take it easy and update us as soon as you can. What was the final conclusion about your pouch "malfunction"? Is it pouchitis or what?
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9636
   Posted 1/10/2017 8:05 PM (GMT -6)   
Best of luck next week, Solomon - I am wishing the best possible outcome for you. My ileostomy was definitely preferable to what I have now. I sometimes used to find emptying the bag a bit of a pain; now I miss emptying the bag and being able to get up and go without worrying about having more stool to pass, butt burn (which can become absolutely excruciating if not kept under control), or anal itching/leakage.

That said, if I hadn't had the reversal I think I would have been constantly wondering "what if". I suspect you would have been too, so try not to beat yourself up for having given the j-pouch a go.
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)

therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3455
   Posted 1/11/2017 8:06 AM (GMT -6)   
I'm here for support. I hope you heal quickly! You're stronger than you think!! You got this!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 136
   Posted 1/12/2017 10:27 AM (GMT -6)   
Thank you all for the kind words.

NSSG: While I guess it doesn't affect the bottom line (pouch has been terrible), of curiousity I will ask my surgeon what she thinks.

Personally, I think the following:
    I had crazy high pANCA values before colectomy. While this is UC specific (and not CD), it actually is also a risk factor for chronic pouchitis.
    I have had some response to antibiotics several times. That would lead me to believe pouchitis is implicated.
    I had terrible UC, and my rectal cuff remains somewhat inflamed since my first diagnosis. I must have some level of cuffitis, more than most pouchers where it is negligible.
    I came into surgery barely able to climb staircases and with barely enough meat to sit on my butt. Despite that, due to my desire to minimize the number of surgeries (the irony!) and my surgeon's (too?) high level of confidence, we did a 2 step. I was happy about that when I woke up. Now I think it is one of my greatest mistakes as if I had done 3 step I may well have happily forgone the pouch. In any case, I think coming into my first op so very weak set me up for failure, and it is probably the reason I had a pouch sinus for 1.5 years.
    That pouch sinus may have been fixed, but it has done some damage to my pouch anyways.
    I think that J-pouch has been heavily sold to us. I spoke to a high level jpouch GI in Germany and he interesting quoted a much higher pouch "failure" rate of almost 19%. This does not consider all the people with various issues who have not reverted to a stoma. Frankly, I think the jpouch is a much more risky endeavor than people are led to believe and it is not so incredible that I am in this situation, sadly.
    Bottom line: combination of minor cuffitis, moderate chronic pouchitis, poor post surgical healing which resulted in a long-term, undiagnosed pouch defect, which even after repair left the pouch worse off.

22 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

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4609
   Posted 1/12/2017 1:14 PM (GMT -6)   
SS,

Adding to your list, didn't they also say something about people with longer abdomens have more issues with their J-pouches than people with shorter abdomens?

Good luck with your surgery next week.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14887
   Posted 1/12/2017 6:10 PM (GMT -6)   
Interesting. Did you try biologics with UC or your pouch? I think I remember you opted for surgery over drugs - which would have been a good plan if things worked out as you expected. I had a high pANCA too, as did blksteeda, if I remember correctly. I think you both had 2 steps. I had 3 step with mucosectomy. I am very petite, only a little over 5 feet. I haven't heard of the thing about shorter abdomens, but I know some taller people who have done very well with their pouches. I didn't like my pANCA reading and my chances with the j-pouch, but it was "go for it", or never get more than 10 feet from a toilet, and I couldn't live like that forever. 18 months of it had made my life a living hell.

Even though I had 3 steps, I was confident i wanted a j-pouch throughout the process. After the first step, there was a little question in my head, because things were so easy with the end, but with the loop, I just wanted to get through each day and reconnect ASAP. I wish you a quick, easy recovery & a very functional ileo, and a nice stoma smile
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Kulinarykidz
Regular Member


Date Joined Aug 2015
Total Posts : 393
   Posted 1/13/2017 8:12 AM (GMT -6)   
Good luck with your surgery. I've met with dr ashburn several times and she has a great reputation in Ohio. Wishing you all the best!!
Female 44 years old- uc diagnosed 7/13
Remicade every 6 weeks since 8/15
Imuran 150 mg, viramin d, probiotic
*hysterectomy, endometriosis and ovarian cysts removed---made a world of difference with uc symptoms!!

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1864
   Posted 1/13/2017 3:54 PM (GMT -6)   
That's great news! I am wishing the best for you, you deserve it..please let us know how you get on and I will be thinking of you and sending positive thoughts your way next Thursday.
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Taking Methotrexate 10mg weekly and on 10g of Prednisone at the moment, hoping it will work for me.

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 136
   Posted 1/15/2017 1:29 PM (GMT -6)   
Dr. Shen believes that ischemia is a big part of the problem. Males have less mesentery in their pelvis (women have wider hips with more blood flow) and he sees a lot more males suffering from pouchitis related to this. Overall, males are more prone to chronic pouchitis.

So yes, he told me explicitly that this could be a factor for me. He offered to try hyperbaric chamber, but I didn't feel like this was worth it (also, cost is also insane).
22 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

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4609
   Posted 1/17/2017 11:45 AM (GMT -6)   
SS,

I was just thinking of you today and hoping that your surgery goes well today. Please update us when you can.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cimzia & Cyclosporine
3-step J-Pouch surgery: 2013 & 2014

Total Hip Replacement: 12/16 -- Thanks Prednisone!!!
Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Stelara

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14887
   Posted 1/20/2017 4:56 PM (GMT -6)   
Thinking about you today. I hope you're on your way to a new, happier life.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 136
   Posted 1/22/2017 12:04 PM (GMT -6)   
@NSSG Thank you for the kind thoughts. smile

I have what I think is a pretty darn positive update.

Surgery went well. The team was able to stay laparoscopic, successfully removed the pouch without removing any other tissues, created a nice (currently ugly but should be good) stoma, reported pretty minimal adhesion issues. Things went smoothly.

My surgeon told me that I definitely made the right decision and mentioned that my swollen stoma is a sign of how sick the Jpouch was. The sinus was not healed and IMO was the #1 contributor to pouch failure.

So far, so good as far as recovery. I am not expecting any long term complications (please God) and am generally very optimistic. I feel so validated after two years of being told that it's in my head or that I just need to take more immunosupressants. I just wish that we could have cut the BS sooner about the truth of this junk J-pouch.

I am remaining *cautiously* optimistic and will continue to update.
22 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

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10028
   Posted 1/22/2017 12:42 PM (GMT -6)   
Awesome news. How are you feeling?
Moderator Ulcerative Colitis
John
, 38, in a minor flare, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; 50mgs 6MP, 4.8g Mesalamine DR, 2mgs pred (tapering)

Choose your own UC adventure: You've just crapped yourself at the mall do you (page 55) cleanup, go commando and shop, (60) 1st get a change from the car, or (63) get a stiff drink and just go home

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9636
   Posted 1/22/2017 1:32 PM (GMT -6)   
Excellent news.

Hoping all continues to go well. It's obviously extremely early days, but it sounds like you made the right decision.
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 : 1495
   Posted 1/22/2017 3:22 PM (GMT -6)   
Awesome! Glad things are going well. Thank you for keeping us updated!
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!

Albannach
Regular Member


Date Joined Jan 2016
Total Posts : 82
   Posted 1/23/2017 6:44 AM (GMT -6)   
Hi Solomon,

I'm glad to hear that the surgery went smoothly. Wishing you a quick recovery, and a well-functioning stoma.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1864
   Posted 1/23/2017 3:23 PM (GMT -6)   
That is great news!! Well done you!
Samantha
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Gluten, Dairy, Sulfite, Salicylate, and Histamine intolerant.
Had home FMT treatment in July 2016 to ward off reoccurrence of C DIfficile.
Taking Methotrexate 10mg weekly and on 10g of Prednisone at the moment, hoping it will work for me.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14887
   Posted 1/23/2017 3:40 PM (GMT -6)   
That's amazing. I am so happy for you. It will be good to get back to living life without the challenges the jpouch was presenting you. Hoping for a quick recovery & a cute stoma. I had a really nice one with my end. The nurse said "if you're going to have a stoma, that's the one you want". I hope you have that one too!!
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 136
   Posted 1/23/2017 4:52 PM (GMT -6)   
Thank you for the encouragement. Hit a bit of a bump yesterday and today. No stoma output. Swelling of intestines near inflamed junk jpouch may be related. As they weaned me from the epidural my pain level shot up very high. Spent many hours in a high pain state. Currently OK, but not consuming anything. Looks like recovery will be longer now. I'm very upbeat nonetheless and just keeping in mind the results of surgery itself.

As NCOT said, very early days. Will keep updating, please God, with news of an amazing new QoL
22 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
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