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

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SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 137
   Posted 12/5/2014 10:28 AM (GMT -6)   
After more than a year of constant struggle with no sustained remission, I have exhausted treatment options and am accepting the surgical option.

I'm scared of what's about to happen, but my conscience is so clean about this that I have no problem moving forward.

The truth is that this experience with UC has traumatized me. I want to get a j-pouch, but I'm concerned about obstructions, chronic pouchitis, and above all, a risk of "Crohn's like changes." I came across this article (http://library.tasmc.org.il/Staff_Publications/publications%202013/dotan.pdf), and if I understand correctly, the only NOD2 risk factor I have is the one in question in this paper.I am considering a permanent ileostomy, but truly value my surgeon's input and want to know his thoughts on the matter.

Colon, I have done everything that one could do for you. I'm sorry for you, truly, but this is goodbye. ;)

EDIT 4/17/2016:
Below is my status one year after jpouch surgery and its takedown. Browse through the thread to see events in between. I will continue to update this thread as things develop.
ONE YEAR UPDATE:

One year ago, I had takedown. The bottom line is that I do regret jpouch and to a much lesser extent surgery on the whole. My colon's chances of survival I think were objectively pretty low, even if I had gone back on pred, taken new biologics, and recommitted to fighting for remission.

That said, my quality of life with the temp loop (!) ostomy was better than my jpouch life, and there's almost not a day that passes where I don't think about that while in the bathroom or clutching my belly.

As it is best understood, I have been diagnosed with chronic pouchitis, which amazingly responded to cipro/flagyl a few months ago in the hospital (even though the same failed several months before that). Prior to that, I spent about 9 months feeling like I still had UC. Following that hospital stay and getting a medical cannabis license, I have been able to function much better, and might be able to consider this an acceptable, if regrettable, quality of life.

I would say that I have 10 BM's/24hr, waking up at night 0-2x sometimes due to pain or needing to go to the bathroom. I do have occasional incontinence. I do have daily pain, both above my anus and at my former stoma site when the pressure in the pouch builds up. The pain is bearable, unless I have to wait several hours for BM. When I'm at home, sometimes I lie down and pass gas, which helps a lot. I sleep pretty well, actually. I empty my pouch effectively when I have a "pouch spasm." My diet is not limited at all, which is good. Overall, I would say that I'm functional, but I and most people around me know that I have issues (really ironic, if this jpouch was meant to improve my social function due to not being self conscious about a bag...).

In June I return home from a year abroad and will visit Bo Shen and my surgeon at CC. I will get a scope and hopefully better understand why I have issues. I intend to inform myself about the option of returning to ileo and pouch removal, but right now don't see that as a likely choice for me. While I hope that some change will come out of these discussions, it seems possible to me that I'm just going to have to live with this quality of life indefinitely and be grateful for my life.

Post Edited (SolomonSeal) : 4/17/2016 5:08:21 AM (GMT-6)


hupshi
New Member


Date Joined Aug 2012
Total Posts : 7
   Posted 12/5/2014 10:36 AM (GMT -6)   
good luck - hope all goes well.

keep us updated

Tunnelvisionary
Veteran Member


Date Joined Jul 2014
Total Posts : 527
   Posted 12/5/2014 10:44 AM (GMT -6)   
You have fought the good fight and I commend you for it. I hope the surgery goes well and you have no complications. For what it's worth, I have a friend with Crohn's who got her colon removed and was terrified of an obstruction, but as long as she chewed well and avoided super high fiber, she was totally fine and has never had an obstruction.

Wish you the best of luck Solomon, and keep us updated on how it goes.
Male - 22
Dx'd w/ UC on 7/14. Recovering from an eating disorder, please no major diet mod suggestions.

Currently taking: Lialda 2x, Looking into VSL probiotics. Vitamin A+D and a multivitamin.

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1902
   Posted 12/5/2014 10:53 AM (GMT -6)   
"The truth is that this experience with UC has traumatized me."

Yes, it can certainly do that for sure!!


I am sure all will go well, and it certainly sounds like the right choice for you. When are you planning on having surgery ?
Samantha, 45 yrs
Stopped smoking Jan 2013.
Diagnosed. Left sided UC, 8th Feb 2014
Pentasa..2g daily
2 x Ultimate Flora 50 billion probotics, Vit D, and Multi vitamin tab daily.
Gluten free from Sept 2014

malaika
Veteran Member


Date Joined Feb 2014
Total Posts : 524
   Posted 12/5/2014 11:06 AM (GMT -6)   
That's a very brave decision, here's hoping it'll get you your life back.
Pancolitis since May 2013.
Hospitalised due to severe reaction to mesalazine in September 2013.

Current treatments: Simponi, 75mg azathioprine, multi-vitamins, ferrous sulphate, Vitamin D, coconut oil, VSL#3 and anti-histamines.
Discontinued: Dexamethasone, various mesalamines, prednisolone, fish oil, turmeric, hemp seed oil, l-glutamine.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4688
   Posted 12/5/2014 11:13 AM (GMT -6)   
SolomonSeal,

I had surgery and it was the best decision that I made in regards to my UC, I fought for about 9 years to keep my colon but in the end it had to go. I woke up from surgery and I felt better again, my colon wasn't poisoning me anymore, it's hard to explain but you just know that you feel better and it's gone. My GI jokes with me that the Monster is gone now.

The surgeries are not easy but they are definitely manageable especially if you are somewhat healthy going into the first surgery.

I'd either head over to the ostomy forum at Healingwell or go to Jpouch.org to ask your questions about surgery because there are people with more experience over there when it comes to j-pouch surgeries, ostomies and complications.

I've had both blockages and pouchitis; both aren't nearly as bad as living through a bad UC flare. My blockages would make some noise, I'd have some discomfort, I'd stop eating and drink some juice or wine and it'd clear in a few hours. Pouchitis you have to take some antibiotics for and it usually clears up in a few weeks; it doesn't feel the same a UC flare.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cyclosporine -- Twice
3-step J-Pouch surgery:
Colectomy- October 2013
J-pouch Creation: March 2014
Take-Down: June 2014

Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3754
   Posted 12/5/2014 11:19 AM (GMT -6)   
Good luck.
My son had to make the same decision when he was 21,colectomy after med failures.
My advice get into high gear and learn about the procedure and complications as much as possible.
Also make sure you have a patient advocate,that can speak for you, preferably someone who also
is educated as much as possible with the procedures and complications.
Trust your doc's, but someone needs to really stay on top of your care,until you are up and running again.
Old Mike

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 12/5/2014 12:22 PM (GMT -6)   
I know coming to the decision becomes easier when the options go away. I am in the surgical waiting room as my daughter undergoes the 2nd of the 3 step Jpouch surgery, so I have some time to reflect. We are not that far ahead of you, but I can tell you that she went into surgery today healthier than she had been in 6 years. Living with a non functioning colon is no life for anyone, much less a young person. I don't think we realized how sick she was until the girl she used to be came back. Nurished, smiling,energy, optimistic...all were buried under the UC cloud. The odds are good that you too can return to health. Surgery is no walk in the park, and we will describe this as a lost year, but it beats losing lots of years. Anyone here will tell you we fought like champs, but today we are one step closer to freedom from the daily obsession that is UC. Get to the best surgeon you can find and keep reading and learning. Fingers crossed for you( and my girl).
Daughter, 21 diagnosed 1-08 w/ UC
Drug sampling: Asacol,Cortifoam, 6mp,Colazal,Rowasa,PPI'S, Flagyl, Pred.,Diet not directly impactful.Remi w/adjustments= remission 4 yrs, re-remission with Tacro 6 mo. Back to Endocort, Uceris,Canasa, hospital(#10), Pred. Pancolitis via scope.Retried Remi. Entyvio, loading doses didn't stop train-surgery Step 1, 8/28/14 Step 2(of3) Dec 5.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4688
   Posted 12/5/2014 1:03 PM (GMT -6)   
Katmom said...
Living with a non functioning colon is no life for anyone, much less a young person. I don't think we realized how sick she was until the girl she used to be came back. Nurished, smiling,energy, optimistic...all were buried under the UC cloud.


One of my fondest memories of this past year (since my surgery) is when my mother said "I haven't seen you smile and laugh like this in years, it's nice to see you happy again". You don't realize the toll that "severe UC" is taking out of you on a daily basis until you have surgery and the UC/colon monster is gone.

Fingers crossed for you and Kat today, please keep us updated. My 2nd step was a long procedure and it took me almost 24 hours before I could even try to walk and I felt pretty good by day 3.
Keith

DX'd with Severe Pancolitis June 2005
Previous Meds: 5ASAs, Predisone, 6-MP. Remicade, Humira, Simponi, Cyclosporine -- Twice
3-step J-Pouch surgery:
Colectomy- October 2013
J-pouch Creation: March 2014
Take-Down: June 2014

Post Edited (ks1905) : 12/5/2014 12:37:37 PM (GMT-7)


Indycat23
Veteran Member


Date Joined Apr 2011
Total Posts : 661
   Posted 12/5/2014 1:30 PM (GMT -6)   
Good Luck to you. The vast majority of people opting for surgery have successful outcomes. You have overwhelming odds on your side! Please keep us updated on your surgery and progress.
Diagnosed 3/2011 w/ pancolitis
Current Meds-Colazal & Entyvio-started 8/5
Prednisone from 4/1/11 to 10/31/14--finally done!!

Failed/Tried-Remi, Imuran, Humira & Simponi

2014 Plan---Entyvio or Surgery..time to get on with life.

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 2504
   Posted 12/5/2014 1:38 PM (GMT -6)   
did you try 6MP and the biologics?
Left sided dx. 2011
Current med: Apriso 4 a day
Cortenema 1 a day / Mes enema 1 a day
Canasa 2 a day
Budesonide 3 a day until taper (2 didn't work)
Vsl 3 packet 1 a day

Ok for 6Mp / waiting on that
My dr. giving one / two punch now!

Supplements: New Chapter multi, calcium, D, turmeric
Diet: no lactose, low fat, no uncooked veggies, No honey or HFCS!! Low gluten.

Bacon Girl
Veteran Member


Date Joined May 2011
Total Posts : 5473
   Posted 12/5/2014 2:03 PM (GMT -6)   
you gave it a good fight, and i hope your surgery goes great. did you schedule it already?

you are in the right mindset for surgery. every time scheduled it or signed the papers, i was a total mess. i'm glad i didn't go through with it because i'm sure i would've had severe depression at the time. we all have different breaking points. you're gonna do awesome with a bag or pouch. i just know it!
Joanna Banana, 24
100 mg Simponi every 4 weeks
25 mg imuran daily
21 mg nicotine patch
AlgaeCal and Strontium
Curcumin, Astaxanthin, Probiotics, DMSO, essential oils, castor oil

Diet: meat, eggs, oils/butter, whey protein, fermented everything, peeled fruit/veg, starches but not too much fiber (2 cups max/day)
Results: One poop in the morning and I'm good. I do fart a lot though!

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4530
   Posted 12/5/2014 2:07 PM (GMT -6)   
Good luck! I love my J pouch......I loved my healthy colon better but hey, that wasn't in the cards for me! If you have any questions, feel free to ask away. I am really grateful that this procedure even exists for us!
Marianne
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked-wanted my life back!
Step 1: J-pouch surgery (Laparoscopic restorative proctocolectomy w/ temporary diverting loop ileostomy) 6-25-10
Step 2: Take down surgery (Ileostomy reversal) 10/8/10
No more UC and no more drugs!! Very happy j-poucher!! :)

momto2boys
Veteran Member


Date Joined Jun 2013
Total Posts : 1808
   Posted 12/5/2014 4:33 PM (GMT -6)   
Good luck!
39 yrs old diagnosed with proctosigmoiditis 6/13/13
meds- 2 Lialda supplements: probiotics (1 VSL3 cap, 1 culturelle and 1 reuteri) 1 gram krill Oil, 5-500mg tabs psyllium husks and 3/4 tsp l-glutamine. Zyrtec for seasonal allergies as needed. Allergic to sulfites. Currently gluten/dairy free (except yogurt) and eating lots of RS (potato starch, green banana smoothie and various beans).

ewafromwarsaw
Veteran Member


Date Joined Jun 2013
Total Posts : 1219
   Posted 12/5/2014 6:27 PM (GMT -6)   
all the best to you !!!
Ewa, 24 yrs old from Warsaw
Left-sided colitis, diagnosed in September 2012
Current meds: 2x2 Asamax (500 mg) and Salofalk enemas (twice a week)
Mutaflor or VSL#3

ewafromwarsaw
Veteran Member


Date Joined Jun 2013
Total Posts : 1219
   Posted 12/6/2014 7:23 AM (GMT -6)   
Solomon, just a random thought: i've read that your fecal transplant attempt has failed. If i were to do fecal transplant myself, i'd choose a completely different country where people are more likely to have different gut flora. I would choose Uruguay, the country where (according to some of my American friends) health care is much better than in the USA and statistically people tend to be healthier than in other Latin American countries. Maybe u should pack up your suitcases and go to Buenos Aires (they also do fecal transplants there) or to Montevideo because u don't risk anything once you've decided to give up your colon?
Ewa, 24 yrs old from Warsaw
Left-sided colitis, diagnosed in September 2012
Current meds: 2x2 Asamax (500 mg) and Salofalk enemas (twice a week)
Mutaflor or VSL#3

CarenZ
Regular Member


Date Joined May 2014
Total Posts : 194
   Posted 12/6/2014 7:52 AM (GMT -6)   
I love my permanent ileostomy! I can't believe how wonderful my life is without UC. My only regret is that I suffered for so long and did everything I could to prevent having the surgery. I wish I had done it sooner. What a waste of my time.
I now LOVE my life.
Wishing you the same! :-)
I'm 52 and I have a permanent ileostomy (6/20/14)

Ulcerative Colitis since about 1995
Been on : asacol, lialda, colazol, azathioprine, prednisone, uceris, rowasa, hydrocortisone, humira, remicade, simponi, apriso and probably some things I can't recall!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 137
   Posted 12/16/2014 9:43 AM (GMT -6)   
Updating you guys:

My surgery will be this Friday with Dr. Wexner at CCF. I had a four day hospital stay to stabilize me when I arrived and I'm hooked up to TPN at night. Feeling pretty sick, but enjoying the freedom of not being in the hospital.

I am going forward into surgery with a completely clean and clear conscience. I have done EVERYTHING reasonable for my colon and do not feel any hesitation regarding my decision. I am glad that I tried the drugs, the diets, the various supplements and off-labels, and even FMT. Whatever comes, I have fought honorably and only hope that Gd will finally grant me the peace and freedom I crave. I sincerely believe that I am starting a new, IBD-free, healthy, and happy life.

That said, the idea of my large intestine being cut out of my belly and pulled out like an anaconda is kind of terrifying shocked

I hope that I can have two stage surgery, but either way, I'll be feeling healthy with an ileostomy for some period of time.

Edit: Katmom, I was thinking about your daughter. I hope she is doing great and looking forward to takedown. :-)
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs (Prednisone, Mesalamine, Humira) not successful
Antibiotics help a lot, Low Dose Naltrexone, CBD oil, Fish oil, Turmeric, occasional Vit D
SCD probiotic yogurt
SCD/Paleo diet
FMT 11/2014 w/ antibiotics & antibiofilms, aborted after 6 days worsening symptoms

The Rock
Regular Member


Date Joined Nov 2014
Total Posts : 155
   Posted 12/16/2014 10:22 AM (GMT -6)   
You are an inspiration, your strength and courage are beyond moving. I applaud you and your decision to go through with this surgery. Living with this disease ad infinitum is simply not an option, and you have exhausted every other avenue. May the surgery go over smoothly, and may you live a wonderful colitis-free life after the fact.
Dx: Left Sided Colitis
Date of Diagnosis: June 2009
Current Status: Mid-Flare

Current Medications: Salofalk 500mg 8x per day, Prednisone 25mg, Betnesol Enema nightly
Diet: Dairy-Free, Preservative-Free, Alcohol-Free, Caffeine-Free, Low-Fat, Low-Fibre

Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 12/16/2014 10:55 AM (GMT -6)   
Congrats, would love to go back and do this in beginning,
39 y/o M, Proctitis DX 1999 (Symptoms in 97), Pancolitis DX 2008
Humira 1X week, Sulfasalazine, Immuran, Uceris, Nicotine Patch
Hydrocortison Enemas as needed
Psyllium (palm full twice daily)
Immodium as needed

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4688
   Posted 12/16/2014 11:52 AM (GMT -6)   
Dr-A said...
Congrats, would love to go back and do this in beginning,


Dr-A,

Me too.

SS,

get up and walk around as soon as you can after your surgery, it help your digestive tract wake up. Head over to the ostomy forum and read up on Ostomies and ask questions, there are lots of helpful people over there who have all ready gone through this and can help you with any questions that you have.

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1202
   Posted 12/16/2014 9:11 PM (GMT -6)   
Hugs to you from Katmom. All ok on our end..take care of you as best you can. Sometimes decisions are made for us. You will be starting a new chapter. Best. Sometimes the best decision is to know when to fold em, so you dont have to run...ok, I had too much wine.
Daughter, 21 diagnosed 1-08 w/ UC
Drug sampling: Asacol,Cortifoam, 6mp,Colazal,Rowasa,PPI'S, Flagyl, Pred.,Diet not directly impactful.Remi w/adjustments= remission 4 yrs, re-remission with Tacro 6 mo. Back to Endocort, Uceris,Canasa, hospital(#10), Pred. Pancolitis via scope.Retried Remi. Entyvio, loading doses didn't stop train-surgery Step 1, 8/28/14 Step 2(of3) Dec 5.

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 2504
   Posted 12/16/2014 9:43 PM (GMT -6)   
Best of luck and quick healing!!!!!!
Left sided dx. 2011
Current med: Apriso 4 a day
Cortenema
Canasa 2 a day
Budesonide 2/day
Vsl 3 packet 1 a day
Quit LDN until I feel better/flu symptoms

Supplements: on hold
Diet: no lactose, low fat, no uncooked veggies, No honey or HFCS!! Low gluten

twingirl812
Regular Member


Date Joined Oct 2014
Total Posts : 111
   Posted 12/17/2014 7:03 AM (GMT -6)   
Best wishes to you SS. Your positive and optimistic attitude will most definitely get you through this. Here's to wishing you a most speedy recovery!!!!

LilyKazoo
Regular Member


Date Joined Jan 2013
Total Posts : 40
   Posted 12/17/2014 9:08 AM (GMT -6)   
good luck on your surgery mr Solomon. hope you have a speedy recovery.
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