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

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SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 5/30/2015 10:31 AM (GMT -6)   
I'm now over 7 weeks past takedown. I wish that I had not gone with the flow and rather had gotten a permanent ileostomy. I try not blame myself because my decision made sense at the time when I made it, but it's hard knowing that I could have said no to the pouch and made life much simpler.

Right now I'm dealing with daytime and nighttime leakage, high frequency, and frequent rectal pain/pressure/discomfort. Lomotil helps, immodium doesn't (sucks, since I had a better method of getting immodium). Fiber doesn't seem to help much. I am trying anti-spasmodics to see if that helps my rectal pain. If I get really miserable I take percocet to give me a break from the pain.

It's upsetting to need medications again after being med-free while I had my stoma. Occasionally I see blood, but my suspicion is that this is normal as my cuff looked pretty healthy on the 1 week post-takedown scope. I have become a professional at butt hygiene, because otherwise anal irritation can get way out of control (I shudder to recall the early days). I have a squirt bottle for my hiney at both my lab and my apartment. I poo by leaning forward, squeezing my abdominal muscles, relaxing my sphincter, and pressing medially on my former ileostomy site. When I get a column of explosive gas out, I know I've just earned myself some well-deserved relief. Also, I would like to share that balneol can be a good way to clean the anal canal and give yourself a break from the internal itching that may occur.

That said, things are not as bad as UC anymore. I do enjoy not having a bag. I have decided to move on with my life and am currently doing a research internship, despite my health difficulties. If things really suck at the ~5 month point, I may ask to have my bag back. If I feel like there is hope, I will reach the 12 month point and reassess. I DON'T want to be one of those people who have a bad surgical outcome and just suck it up for the rest of their lives.

Those UC'ers reading, do not be too discouraged. Before my op, I talked to people who were happy with their decision to get a jpouch. Most people are. Chances are, I'm just in a "slow-progress" group of patients rather than a "poor outcome" group. My advice is to be careful of the "de-facto" status of the j-pouch which most (certainly my) doctors hold. Nothing comes for free in life. You can live without the bag, but there is an unknowable price to doing so. My mistake was thinking that the best surgeon, diet, and probiotics would guarantee an excellent pouch. There are a TON of unknowables in terms of what your long-term outcome will be.

I will keep you updated as to my progress.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs 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
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3674
   Posted 5/30/2015 11:08 AM (GMT -6)   
I assume you have been to j-pouch.org you can get a lot of help there.
You might want to have the cuff checked again just to make sure.
Cuffitis in that little 1/2 inch of cuff can cause lots of problems, but usually controllable with rectal
meds.
There are a whole host of pouch problems,cuffitis,pouchitis,spastic pouch, irritable pouch syndrome.
You might try stopping the probiotics for awhile and see if things improve.
As I am sure you know the pouch has an adjustment period, and you have heard all this before.
Lots of people use calmoseptine for butt burn,acts as a barrier cream.

Good luck.
Old Mike

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 5/30/2015 4:30 PM (GMT -6)   
SolomonSeal said...
I poo by leaning forward, squeezing my abdominal muscles, relaxing my sphincter, and pressing medially on my former ileostomy site.


This is not normal. You may be suffering from a stricture or pelvic floor dysfunction. Have you explained this to your surgeon or GI?
Liz, 27
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 5/31/2015 4:35 AM (GMT -6)   
Oldmike: I have been taking HC suppositories since before takedown, but I am pretty sure that most of the cuffitis was diversionary because after takedown there is no bloody mucus anymore and the scope after takedown showed a mostly healthy cuff.

I have been off and on with VSL#3DS. It does not seem to have any short-term effects (I am taking prophylactically). My perineum does not bother me much since I maintain it well. I do not need calmoseptine very often nowadays.

Pluot: That's how I'm able to empty as fully as is possible. I can still empty some without doing all of that. I prophylactically digitally self dilate. No problem getting a full finger/suppositories through. Not 100% sure about pelvic floor dysfunction, but my anal manometry was normal 1 week post-op. My surgeon said my squeeze pressure is very good.

I keep my surgical team updated as to my status every week. They tell me that my only choice is to keep taking symptomatic meds for my suffering and sups for any lingering cuffitis until things get better. I told them that I am upset given the expectations I was given. They tell me that if I am not satisfied with my quality of life in some number of months they can excise my pouch and give me a perm ileo and that right now I have to make the best of things.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs 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
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 7/2/2015 7:19 AM (GMT -6)   
3 Month update:

I am studying/working abroad, but felt like it would be a good idea to see a local GI nonetheless. He said about the same thing as my GI and surgeon (try a pouchitis antibiotic combo and see if it helps). He said about 50% of patients reach the 4-7 BM and feeling normal point at around 3 months. Interestingly, apparently the jpouch failure rate in Germany is 17%. I wasn't happy to hear that one. O_O

I must have/have had pouchitis. Since I've started cipro and flagyl my pouch symptoms have significantly improved. Unfortunately, I still have frequent episodes of mild/medium incontinence. Nighttime pain and frequency is still a significant issue, but overall the frequency has gone down and the BM's have totally changed. They are formed more often, are easier to pass, and are much less explosive. Previously, the toilet bowl was pretty gross. After the antibiotics, there are no more poop-splosions and the toilet bowl is clean again... Still not feeling great, but I feel like the antibiotics let me NOT be a zombie for part of the day.

Everybody says give it 6 months, and I am planning on doing that and hopefully seeing significant improvement by then. It's upsetting to go from being told this will be my "cure" and that I should have an excellent pouch outcome to discovering that I have pouchitis... it validates all the cynicism I developed about any treatment for IBD. Especially because it is happening early, there is a chance that my pouchitis either is chronic or will become chronic, but right now I will not dwell on that. If that becomes the case, at least I will have that knowledge and be able to make new decisions to lead me to a better place.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs 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
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4293
   Posted 7/3/2015 9:00 AM (GMT -6)   
SS,

It's good that you are treating your pouchitis. How long have you been on them for? You'll see some immediate improvements but it takes a few weeks for them to work on most of the remaining pouchitis.

I have no symptoms as long as I continue to take antibiotics....agumentin works the best for me.

Up to 50% of J-pouch patients have pouchitis within the first 2 years. I just found a link for it at the CCFA. www.ccfa.org/resources/surgery-for-crohns-uc.html so I wouldn't worry too much about it until it becomes cronic. I have cronic pouchitis and if treated it is very manageable for me, much more so than UC ever was.
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

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 8/30/2015 1:14 PM (GMT -6)   
For those still following:

I will update this thread until it has a happy ending. I like to think that such a thing is still possible. :-)

4.5 month update:
I spent three months doing some biomedical research abroad. Currently studying abroad. I think it was the right decision rather than staying home and focusing on the pouch 24/7.

Pouch performance seems to bounce back and forth every couple of weeks. At its best, I have 2 nighttime BM's, 6-7 daytime. Currently I'm in a bad spell with 4 nighttime BM's, up to 10-11 during the day. Average is obviously in between. Holding causes me pretty rough rectal pain. I still am dealing with regular incontinence. I have been able to reduce my use of pain medication to a minimum. I am not as tired or depressed as I was initially, but I would say most of that is due to readapting to a lifestyle with GI issues. My body has learned to deal with this.

It looks like my ileostomy closure scar is keloid. I get some pain and other funny stuff from the area, but it sounds like there isn't much that they can do for it.

I will have a pouchoscopy next week. Hopefully I will get some answers then.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs 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
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

Contentprof
Regular Member


Date Joined May 2014
Total Posts : 409
   Posted 8/30/2015 11:19 PM (GMT -6)   
Please do keep posting. I know lots of us are reading your updates and sending support!
I'm so sorry this part had not gone as well as you had hoped and the surgeons had forecasted.
I like your declaration that you'll keep posting til a successful resolution!
57 yrs old. UC >14 yrs after proctitus. For flares: Cortenemas, Prednisone, Uceris. Severe allergy to many drugs inc mesalamines (hives, fever), 6mp (fever), Remicade (it worked for 6 mos then stopped due to joint pains, Anti-TNF Induced Lupus, neuropathy). Flaring now & searching for UC meds & supplements. Highly restricted diet - broth, plain protein, rice.
Taking Asthma & esophagitis RXs too.

ewafromwarsaw
Veteran Member


Date Joined Jun 2013
Total Posts : 1177
   Posted 8/31/2015 3:11 AM (GMT -6)   
i'm sure everything will go perfectly and wish you all the best!
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

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 9/27/2015 9:43 AM (GMT -6)   
5.5 month update.

I had my scope two weeks ago. The doc biopsied some apthous ulcers which looked like pouchitis. He described my pouchitis and cuffitis as mild, although my cuff was bleeding a good bit from the endoscope. He said that maybe I just need more time. We will reassess at the 7 month point. Still dealing with 15ish BM's daily along with the urgency and incontinence. In the meantime I am increasing my VSL consumption, using lomotil, and trying to lower stress. If and when things don't get better, I'm worried about where the discussion will go since cipro/flagyl was not enough.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs 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
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1675
   Posted 9/27/2015 1:16 PM (GMT -6)   
I feel bad for you.. What a huge disappointment!! but I cannot help but think that things will improve over time, I hope so, and so do keep posting to let us know how you are getting on.
Samantha, 45 yrs
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Pentasa 2g daily, Vit D, Multivitamin, Calcium, St Johns Wort, Vit B12,Quercetin with Bromelain
Gluten, Dairy and Sulfite free.
Clinical remission as of July 2015.

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 8729
   Posted 9/27/2015 1:41 PM (GMT -6)   
Sorry things are going so rough. This totally sucks. Is there a plan B, if you wait it out longer and no improvement? Could you get an adjustment to your pouch, or opt for an end-ileo instead?
Moderator ulcerative colitis
John, 37, uc proctosigmoiditis in remission
Rx: Remicade 5mg/kg/8 weeks and 6MP 50mgs/day
Diet mods and supplements didn't help me.
For authenticity, picture my posts spoken with a Boston accent. Drop the final "r" in words: birds of a feathah flock togetha...

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 9/28/2015 1:11 PM (GMT -6)   
Well, if things don't get better the next line conventional treatments are different antibiotics or trying UC style immunosuppressive meds. I am not interested in the latter.

I don't think there is anything mechanically wrong with my pouch, so I don't see what redo would help with. From my perspective, if reasonable treatment fails after 1 year mark, I need to talk to my surgeon about how safe pouch removal with end ileo is and what long term expectations would be. I'm hoping I don't need to face another operation.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs 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
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14450
   Posted 9/28/2015 7:28 PM (GMT -6)   
Did they mention possibly putting you on a low dose of antibiotics for a longer period of time? Some people take them as a preventative. I think it might be beneficial in your case, to test for a month or two, and see if that enables you to have a better QOL. Have you tried using suppositories?
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4293
   Posted 9/28/2015 7:33 PM (GMT -6)   
Solomon,

I can only speak from my experience with my pouch and pouchitis, Antibiotics taken individually did not work for me; I had to combine them to get them to work...like Cipro and Flagyl together. After a while that combination did not work for me and I had to switch to Augmentin and Cipro, which was very effective for me. I've also used Entocort and Xifaxan which didn't work for my pouchitis.

Unfortunately Antibiotics give me Thrush after only a few weeks which makes things worse for me and I have to treat that too. It was like a never ending cycle for me.

I've always taken Culterell as my probiotic but at my nutritionist's and GI's insistence they switched me to Florastor to help with the Thrush and pouchitis, it has made a huge difference for me and I've been able to cut almost all my antibiotics out, right now I'm tapering down to Cipro once a day.

I was getting really frustrated with the Thrush and asked my GI to get me Cimzia so I could get off the antibiotics but if the Florastor works then I'm probably going to put off the biological for another time.

The way I look at it is that it's a lot easier for me to try medications then to go for another major surgery, but my pouchitis isn't that debilitating for me.
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

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 10/4/2015 6:07 AM (GMT -6)   
NSSG, I've tried suppositories. I did not notice any effect. Given how refractory my colon was, I wouldn't be surprised if the rectal cuff is also med-refractory. We could try antibiotics again... but I'm not willing to do chronic pouchitis/chronic antibiotics.

KS, cipro/flagyl seemed to have an impressive immediate effect for me until symptoms returned fairly soon. I also developed thrush and a man-pit yeast infection which took a lot of effort to overcome. Another reason I am very reluctant to try antibiotics again.

I didn't feel comfortable with most of these medicines to begin with... one reason why I had surgery... to get OFF of meds... I'm not OK with this sick joke where after traumatizing surgeries I have painful inflammation and take immunosuppressive medications that cause side effects, with the only difference being that this is called "pouch-itis" vs. "col-itis."

Paleo seems to help me as much as it did before surgery. Not too much. After upping VSL#3DS to twice a day, I feel like my pain and gas may be a little reduced

Symptoms seem to get better/worse every couple weeks. Fasting does seem to help, but staying hungry is not a good lifestyle for me.
21 y/o male
UC: Diagnosed proctitis September 2013; pancolitis January 2014
Conventional drugs 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
Nothing worked. 12/2014 Proctocolectomy with ileal pouch anal anastomosis

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 11/4/2015 12:27 AM (GMT -6)   
I'm 7 months out and it seems that I have failed all antibiotic therapy. My GI doctor is talking about steroids and AZA. I intend to refuse immunosuppressive treatment. I feel like I'm running out of options.

Currently dealing with frequent spasmodic pain, 15 BM daily and frequent incontinence. Still carrying on with my life as best I can, even if it involves pain.

My desire is to get through next months using pain meds and sheer grit. I want to confirm that what I am dealing with is indeed chronic pouchitis. If that is the case and I cannot get it naturally under control, then I will see if the risks of pouch excision are acceptable. I wonder if getting out sooner will reduce the damage it does to my body.

The jpouch has been one of the worst mistakes of my life. I hope that I will be able to forgive myself one day.
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

ushippedyourpants?
Regular Member


Date Joined Jul 2015
Total Posts : 240
   Posted 11/4/2015 6:18 AM (GMT -6)   
As well, I wish your results were more acceptable. It sucks to put so much into something and still wind up feeling like sh!t !

Is a second opinion an option ? I know you said you had the best surgeon, but sometimes a new look can be beneficial. We recently had to go to a new hospital and see new docs for our son. It wasn't a decision we would have made if we had a choice, but we're thankful that we had to.

kiptyn
Veteran Member


Date Joined Jul 2013
Total Posts : 607
   Posted 11/4/2015 7:10 AM (GMT -6)   
Please, please don't blame yourself. You made the best decision you could based on expert advice, research, your age, etc. Your pouch isn't a "mistake"-you're simply having very bad luck with it. There was absolutely no reason to expect this to happen.

It's like being mad at yourself because you got in a car accident on the way home and thinking that if only you had taken a different route, the accident never would've happened.

I'm a person who is constantly second-guessing myself. I have a great memory and anytime I do something/not do something and it doesn't work out, I remember and fret about it for a long time. I've learned that this is a way for me to feel in control. Unconsciously, being out-of-control is worse to me than being angry at myself about things that I couldn't have done anything about.

Please don't beat yourself up about this. Sometimes bad things happen and there's nothing we can do. I recommend you go talk to a therapist for short-term therapy to help you feel better about making the j-pouch decision.
F, mid-40s. Diagnosed early 30's. Grandfather and 1st cousin also had UC.

Daily: 3 grams Doctor's Best Curcumin (6 g while flaring), 4 TBSP resistant starch as potato starch, vit D, folic acid, vit B6, Wellbutrin 450 mg/day, Prevacid 2x/day, Olympian Labs 400 mg grape seed extract 2x/day, Align, Culturelle, 5 oz of yogurt.

Bad reactions to 5-ASAs/mesalamines, Remicade, psyllium seed powder

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9112
   Posted 11/4/2015 7:26 AM (GMT -6)   
@Solomon - That really sucks that nothing has got any better. I can't blame you for refusing steriods and immunesuppressants. I'm in a similar boat to you and trying to decide what meds I am prepared to try, because there are some I'm not willing to waste any time on - oral mesalazine or pred for a start. Haven't decided about AZA or the biologics.

I second the second opinion. It can't do any harm and it may be helpful.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, azathioprine, 6MP, Remicade, methotrexate, Humira, various diets.
Had surgery Feb '13 - subtotal colectomy with end ileostomy. First thing to put me into remission in 13 years.
Had second surgery 10th July '15 to reverse the stoma and connect the ileum to the rectum. Feeling rough.

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4293
   Posted 11/4/2015 8:46 AM (GMT -6)   
Solomon,

Maybe you can try something else to hold you over until you decide on the future for your j-pouch. I started Cimzia last week for my pouchitis because I wanted to get off of antibiotics; within about 3 days my pouch became easier to empty and made much less noise during the day and at night.
Keith

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

Current Condition: Chronic Pouchitis -- Not as bad as I thought it would be
Current Meds: Cimzia and Sulfasalazine

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 14450
   Posted 11/4/2015 10:31 AM (GMT -6)   
I hate hearing that things haven't improved. You have to remember that you took the step you had to at the time. Living with your colon wouldn't have been a piece of cake either. You said earlier that you had a cancerous tumor and stool in your appendix, that alone would have probably caused emergency removal at some point. That would have potentially resulted in a worse result... Besides, medically refractory UC rarely improves and the RX options haven't changed since you began your journey.

I think you have to try to keep your chin up and continue moving forward whatever it takes. Pointless to sit back and harp on what has happened. I don't think doing nothing would have yielded a better outcome. It seems like your journey is just going to take longer. Whether it's a pouch redo, can they strip the cuff- would that help? A struggle to find meds that help you, or a return to a perm ileo, things will be okay. I didn't mind me end ileo at all. The temp loop has been difficult but I am dealing with it. There are times that I feel like the perm ileo is the best solution to all of this. Less surgery, less adhesions, no risk of pouchitis, no meds after surgery, TI in tact... I can't see going through this and taking drugs afterwards. I think if it came to that for me, I would plan on going back to the ileo at some point. The problem with losing the pouch is that there is no going back. If you just divert, you're stuck with a loop and potential symptoms from the pouch. We have another member on the ostomy board, susan53, she's going through the same thing after 20 years with a functioning pouch :( You should check it out over there. We also have another member in similar shoes, SilentLucidity, not exactly the same but pouch failure..
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: no meds. Step One J-pouch Surgery Complete!

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 133
   Posted 11/21/2015 3:44 AM (GMT -6)   
Hey guys,

Thanks for the support. Although my surgeon and local GI are quite knowledgeable about pouches, I'm going for a 2nd opinion at another major medical center. I'm also looking into visiting Bo Shen (not simple, since I'm currently abroad from the US). I doubt they will give me anything new to work with, but if they confirm that I am really dealing with chronic pouchitis, it will at least give me the peace of mind of knowing what the situation really is and what my options are. I am looking into a surgical technique called TAMIS which might let me have pouch excision more safely, if and when it comes to that.

Although I am impressed with Entyvio's safety, for the most part I'm unwilling to do biologics and systemic immunosuppressants after my experience using them for UC. The jpouch also just isn't worth the drug risks... I cared so much about my colon, but what I have now is not half as valuable to me as my natural large intestine was.

notsosicklygirl said...
There are times that I feel like the perm ileo is the best solution to all of this. Less surgery, less adhesions, no risk of pouchitis, no meds after surgery, TI in tact... I can't see going through this and taking drugs afterwards.


I think you hit the nail on the head. This is how I feel about my situation. That outcome would have been much better than the one I have now, and it would have been easier to obtain. At this point, the question is how bad will the extra adhesions, additional bowel resection, and all the other scary potential complications be if I proceed to pouch excision. I've been keeping up with other people's stories. I hope we can still have a happy ending.
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

DMC2011
Veteran Member


Date Joined Jul 2011
Total Posts : 2504
   Posted 11/21/2015 9:43 AM (GMT -6)   
Wow, i just read this whole thread and I am sorry you got dealt this hand but its great you are sharing your journey.

I think you are the strongest person and I am rootig for you!

Xoxo
Left sided dx. 2011
Current med: Apriso 6
6mp 75 mg split 2x a day
Canasa as needed
VSL3 As needed


This sucks!

Poppie
Veteran Member


Date Joined Feb 2014
Total Posts : 1675
   Posted 11/21/2015 9:55 AM (GMT -6)   
I am rooting for you too. You are brave!
Samantha, 45 yrs
Stopped smoking Jan 2013. Diagnosed Left sided UC, 8th Feb 2014.
Pentasa 2g daily, Vit D, Multivitamin, Calcium, St Johns Wort, Vit B12,Quercetin with Bromelain
Gluten, Dairy and Sulfite free.
Clinical remission as of July 2015.
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