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Surgery here I come (Updated over years, from UC to Jpouch to Healthy Ostomate)

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Posted 11/21/2015 5:46 PM (GMT 0)
Solomon, I think going to see Dr Shen is smart. Hopefully there are some options. I have heard he is the guy you want when you need help with a pouch. Pouchitis is the worst :(
Posted 1/25/2016 9:08 AM (GMT 0)
Another update, I'm sorry to say it's not a good one.

I was released yesterday after a 4 day hospital stay following ER admission. It seems that worsening pouchitis and/or GI infection were responsible, but they are not sure if it is one or both.

I starting pouring liquid out my backside like a spigot and the nausea increased to vomiting. Lots of pain. By the time they checked my bloods at the hospital my kidneys were failing due to extreme dehydration and I was losing the ability to walk.

I received IV cipro/flagyl, and will be finishing up with cipro. I failed mesalamine again two weeks ago, and once I finish the antibiotics will be going back on a long course of steroids for the first time since colectomy (I hate it but I don't know what else to do).

There's not much I can say at this point. I don't know what the future holds health wise (this is also holding up my plans to become independent and start my own career and life). There is good in this too. I've learned to just be happy with what I have right now and believe that if I persevere things will work out right. I've learned to stop asking "Why???" and just take control over my own outlook. My connection to God and my religious life have become more resilient.
Posted 1/25/2016 1:27 PM (GMT 0)
sorry that you are having issues, but good that you are seeing some benefit too -

would be nice to know exactly what's going on, but sometimes those important thongs like that seem to elude us -

I'm sure you future is still the same, just slightly delayed - don't despair, all things will come to you when it's time -

probiotics part of your regimen these days ?
Posted 1/25/2016 4:38 PM (GMT 0)
SS,

It sounds like we have similar issues with our pouches. I have chosen to treat my pouch issues with medication instead of having another surgery to have the pouch removed. If I don't treat it then my pouch turns into a spigot too, I rapidly lose weight and can't function.

I also get the same yeast/thrush infections from the antibiotics, I have found that I do not need Diflucan if I watch my diet and take Florastor. It took me a while to get it all figured out but I haven't had Thrush in about 6 months.

I am trying to migrate to a biological (currently Cimzia) because I do not want to continue to rotate antibiotics, I've done it for almost 18 months. I took my 2nd regular dose of Cimzia last week and it has worked really well for my pouch symptoms, if it continues maybe I'll stop the antibiotics in the next 2 weeks. The previous dose that was supposed to last a month wore off in less than 2 weeks.

When treated my pouch works pretty well. I'd prefer not to have to take medications but that's not the hand that I've been dealt.
Posted 1/25/2016 4:42 PM (GMT 0)
"My connection to God and my religious life have become more resilient"

Your last post made me cry a little, I just can't believe how things have turned out for you. You do still sound resilient and mentally strong, which is good, remember your young, and therefore you have the strength to fight this.

I am rooting for you, please continue to let us know how you get on x
Posted 1/25/2016 8:18 PM (GMT 0)

SolomonSeal said...

I received IV cipro/flagyl, and will be finishing up with cipro. I failed mesalamine again two weeks ago, and once I finish the antibiotics will be going back on a long course of steroids for the first time since colectomy (I hate it but I don't know what else to do).

SS,

Which steroids are you going back on? Entocort works pretty good for pouches. I use it for strictures. I still get some side-effects from it but nearly as many as Predisone.
Posted 1/28/2016 7:55 PM (GMT 0)
KS:
Yes, I am interested in Entocort, which has a much more limited effect than pred.

So far, I think I have successfully prevented the thrush with constant probiotics (between antibiotics), a specific additional yeast probiotic (S. boullardii), and coconut oil, which has an antifungal effect. Also, this course of cipro/flagyl is much shorter than the one than caused me thrush.

The good news is that I think that the cipro/flagyl actually worked for my pouchitis this time. It's been about 4 days since release and I feel much like I did the first 2-3 days with oral cipro/flagyl last time. The fact that it was IV and thus a much higher dose may have had something do to with it. I'm doing very well (maybe 7 BM today). While the effect went away after a few days last time, I'm happy to enjoy this however long it lasts. If and when I relapse, I will consider next steps (probably entocort).
Posted 1/28/2016 8:26 PM (GMT 0)
that's excellent! I am hoping you continue to feel well for a long time. :)
Posted 1/29/2016 5:34 PM (GMT 0)
SS,

People do the "antibiotic holidays" where they are off of the antibiotics for a week or two and then go back on them for 2 weeks, it helps to prevent a resistance to the antibiotics. As well as rotating the types of antibiotics that you are using.

Florastor is a brand of S.Boulardii, so we are taking the same thing.

I hope that this knocks it out and you don't need the antibiotics in the future. This past week the Cimzia has seemed to really help me, I hope that it doesn't wear off before my next dose.
Posted 4/17/2016 11:05 AM (GMT 0)
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.
Posted 7/18/2016 4:11 PM (GMT 0)
It's over 15 months since takedown. Pretty much none of that time has met my expectations for the jpouch and some of it has been spent suffering a lot.

Given my continuing symptoms, about a month ago I went to the pouch expert, Dr. Shen at CC. He looked at a CT I had in the ER 6mo ago and found a sinus (basically a defect in the pouch). He then did a pouchoscopy and also operated on the sinus, trying to fix it.

Pouchitis has gotten worse. There are now even ulcers by the inlet to my pouch. According to Shen, the longer you have the pouch, the greater your risk for de novo Crohn's. I don't want to let that happen.

After the scope/op, I think my pouchitis flared really really hard. I was in bad pain and not eating for a week thereafter, and my weight is still low. A week of cipro/flagyl brought me back to my "normal." I'm now on steroids again (budesonide). I'm definitely feeling better and am able to exercise and travel, but even after all of this treatment my sleep is fragmented and my bathroom visits remain frequent.

In two weeks I will see Shen again. I will tell him that unless he has something really convincing to stop me, I'm ready to rid myself of the jpouch. I payed such a heavy price with my health to "try the jpouch" as my surgeon insisted, but the collateral damage I can suffer from this dysfunctional thing is unacceptable, besides the unhappiness it's causing me. The jpouch was supposed to give me my life back, but I feel like the horse (jpouch) is riding its owner (me).

I've seen multiple surgeons and will see yet more. As I prepare for jpouch removal and permanent ileostomy, I'm trying to see how I can minimize the risks of Jpouch removal (which, as nobody tells you, are very significant).

I'm young, so a permanent ileostomy is frightening; however, I remember my experience with a temporary ileostomy, and it was as the experience of being the rider of an obedient horse (to reuse the simile). I went on 4 hour bike rides without worrying about needing the bathroom. If I played my cards right, I would wake up only once, to vent my ostomy bag and go right back to sleep.

I'm looking for a place to connect with others who have an ileostomy from a young age, and/or removed jpouch, and do a wide range of activites with their ostomy. I know there's the Ostomy board here, I also know of Inspire and the UOAA board. Any other recommendations?

______________________________________VENTING

Emotionally, while I'm strong, deep down it hurts. I just turned 23. I told nobody except my GF that it was my birthday, because my life feels like a debacle hardly worth celebrating right now. I haven't celebrated my birthday for three years now, spending my time surviving blood loss or chained to the toilet. A sharp contrast to my friends out drinking and being young. I am far less social as I hate explaining my situation to my friends/acquaintances while I watch them go to graduate school/start careers/get married.

I do still believe strongly that my UC story will have a happy ending, and that that happy ending is coming soon. I have made a big mistake, but God is forgiving, and I pray that permanent ileostomy surgery will go great and that I will rock my ostomy even better than the first time, after which I will go about moving forward with my life's ambitions. I will also turn what is a traumatic experience into a desire to live more fully and more for the benefit of others who hurt.
____________________________________
Posted 7/18/2016 4:41 PM (GMT 0)
I hate that you're still suffering with all of this. I was hoping Dr Shen would be able to do more for you. I agree though, you can only give so much before you need to make decisions about how to get back to a state where you regain your confidence and QOL. If you've only had a loop ileo, and you were OK with it, you're going to be much happier with the end. The end ileo, for me, was the loop without any problems AT ALL. My loop was really hard to manage, but my end was a piece of cake. All of this is very difficult, and even more so at such a young age. I hope you get the happy ending you deserve very soon. What did he say about your prognosis? I don't understand, was there a problem with the pouch or do you have pouchitis, or both? Is the pouch now structurally correct, but the pouchitis persists? Did they mention treatments for the pouchitis? Do they think it's Crohn's?
Posted 7/18/2016 5:24 PM (GMT 0)
FFS.

Wrote a lengthy reply which I lost because of HW's dinosaur cookie policy which freaking logs you out for no good reason whatsoever every week. Usually try to copy all long posts beforehand but forgot and now lost it for good. Not up to rewriting it, but I'll try again later if you're interested.
Posted 7/18/2016 7:01 PM (GMT 0)

NiceCupOfTea said...
FFS.

Wrote a lengthy reply which I lost because of HW's dinosaur cookie policy which freaking logs you out for no good reason whatsoever every week. Usually try to copy all long posts beforehand but forgot and now lost it for good. Not up to rewriting it, but I'll try again later if you're interested.

It gets me all the time too. so annoying when it happens. I just had to re-log in to post this.
Posted 7/18/2016 7:06 PM (GMT 0)
SS,

I use Pepto Bismol (tablets) now and it helps me just as much as the antibiotics without the risk for Thrush. So I use Pepto for a couple of weeks and then switch to antibiotics for another couple of weeks.

Stelara has become ineffective for me and I need to switch to another biological but currently the rotating with PB is pretty effective for me.

I've thought about taking a trip to Cleveland to see Shen but I haven't gotten around to making an appointment.

I don't think that you've ever been on a biological so it might be worth a try. My first biological (remicade) worked great for me for about 5 years prior to my surgeries.
Posted 7/18/2016 7:21 PM (GMT 0)
NSSG:
There is definitely inconsistency between doctors. I will see Shen again for a scope soon, and I guess we will get some greater clarity then.

I definitely had/have a sinus. Basically like a closed off fistula, which Shen thinks was probably there since jpouch creation. It's not clear yet whether Shen was able to repair that, and even if he did, whether that will translate into resolving the pouchitis and resolving the symptoms.

He said Crohn's is possible but he doesn't think that's the case. He said ischemia could be possible. He says I have normal pouchitis, but it's not clear how much of that is accounting for my symptoms.

Surgeons basically just say it looks like some combination of a septic/anastamotic issue plus normal chronic pouchitis (of course it can always be/become Crohn's...) and that if I'm ready to get rid of it, that's fine.

Nobody seems too obsessed with narrowing down the cause, just finding what will work.

Abx help, but I can't keep doing that. I've tried other treatments, up to budesonide currently. If I have ischemia, they could send me to an oxygen chamber... not really a viable solution.

KS:
I took biologics when I still had my colon. For me, that's unacceptable now.

NCOT: I'd be happy to read the crux of what you wanted to write.
Posted 7/18/2016 11:26 PM (GMT 0)
There is no doubt you have had a terrible time..off the scale.. But, I am hopeful that things could turn around for you if you decide to go ahead with the permanent ileostomy surgery. Whatever you decide I don't think you should constantly blame yourself for your initial decision to try for a J Pouch, you had no idea it would all go so horribly wrong...
Posted 7/19/2016 11:26 PM (GMT 0)
So sorry you are going through all of this! I hope that next year you have a HUGE 24th birthday celebration and all all healed from your upcoming surgeries! You are due for many years of only good after all you have been through!
Posted 7/25/2016 7:16 AM (GMT 0)
I've been following your posts the whole time. I think you can trust yourself about next steps given all you've been through. It's terrible that you've had this ongoing ordeal for so long. I commend you for making decisions and managing with all that's unfolded as best you can. There's a shift in mindset at some point if possible for you to put the suffering behind you. You are not damaged if you choose to get rid of the jpouch as I see it. You gave it it's best shot. Time to choose life - if you are at that point - a new chapter where you can live forward with so many opportunities ahead and much joy for you. You have shown tremendous fortitude every step of the way. It will forever make you more compassionate with others who are struggling with their own hardships and will deepen the gratitude you have in your life. Just my opinion about what's ahead for you - and sending optimism and much support - as well as my respect and admiration for all you've endured at such a young age.
Posted 10/27/2016 9:14 PM (GMT 0)
TL;DR
I'm having surgery to remove the jpouch and convert to a permanent ostomy.

Shen was able to fix the sinus (he thinks so at least) but I still have inflammation and symptoms. I'm needing pain meds despite being on my second course of Entocort and antibiotics since my last scope and subjecting myself to more of this is crazy.

I am planning on getting the pouch removed and going back to an ileostomy in January. I know the risks, but the possibility of an expected (good) surgical outcome would make my life so much better. I've already tried putting an ostomy bag on--it's still fine on my skin and I will get the hang of it again quickly.

I'm doing a hair removal treatment on my hairy belly so that things will be easier with the ostomy flange.

I will probably go to medical school after I get better. It would be a shame to waste all the medical knowledge I've acquired over these years!
Posted 10/27/2016 10:22 PM (GMT 0)
Just a few months to go then until relief. A end-ileo has got to be a whole lot simpler.

What are your typical daily symptoms like now with the failed j-pouch?
Posted 11/1/2016 1:24 PM (GMT 0)
Only spotted this thread through chance. I know I'm a bit late in replying, so I hope Solomon still sees this.

Solomon - In case you're interested, you may be able to switch to this in the future. It's a titanium implant which replaces the traditional ileostomy.

ostomycure.com/

I will follow your progress with interest, as I will probably end up going back to an ileostomy if medical treatment fails. I seem to remember you not wanting to go down the immunesuppressant path - well, that's the path I'm going down. Already on 6MP, starting Entyvio tomorrow (literally). I was doing better for a while, but there are some unwelcome signs of things getting worse again, so I'm very glad to be starting the Entyvio.
Posted 11/1/2016 1:50 PM (GMT 0)
Good luck with entyvio, at least that's a completely new treatment for you, and hope of a different result :-)
Posted 11/1/2016 1:57 PM (GMT 0)
Thanks, iPoop - I'll let you know how it goes :p
Posted 11/1/2016 4:11 PM (GMT 0)
I am happy you've come to terms with what's best for you to move on with life. You've been through way too much already and you deserve to get your life back. I am coming up on one year with my jpouch, and it's been pretty good so far. The stuff you describe is unacceptable so far as QOL goes. I don't know what I would do if I were presented with all these obstacles - probably the same thing you're doing. I wish you the best of luck. Please continue to update us.
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