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

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kiptyn
Veteran Member


Date Joined Jul 2013
Total Posts : 607
   Posted 4/17/2015 10:17 AM (GMT -6)   
Thanks for the update, Solomon. Very happy for you that you're feeling good about your decision. So helpful to hear about your experiences. Keep us posted.
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 (potato starch), vit D, folic acid, other B vits, Wellbutrin 450 mg/day, Prevacid 2x/day, Olympian Labs 400 mg grape seed extract 2x/day, Align, Culturelle, 5 oz of yogurt.

Can't tolerate 5-ASAs, Remicade, or psyllium seed powder

Virdent
Regular Member


Date Joined Nov 2014
Total Posts : 113
   Posted 4/17/2015 10:20 AM (GMT -6)   
Hey solomon, I was exactly in your shoes questioning the choice of opting for the pouch instead of the perma ileostomy, with the frequency, some urgency, gas, lack of sleep, etc, but at about 2 months post takedown things just started getting better and I could see light at the end of the tunnel so just stick in there knowing that life is good and you if need be you could always go back to the ileostomy and live a perfectly happy life but atleast give the jpouch a fair shot of time, most say it can take up to a year for the pouch to learn to be a colon.

I'd also recommend looking into a possible pepto bismal maintenance dose with a good probiotic, I swear atleast in my case I've seen positive results. The bad bacteria doesn't like the pepto bismal, it has similar benefits to an antibiotic but is safer long term. I think I'll try and switch over to oil of oregano at some point. I believe it's Dr.Shen who has found vitamin d deficiency in almost all pouchitis cases as also so up your dose and get some sun!

Post Edited (Virdent) : 4/17/2015 10:27:39 AM (GMT-6)


ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4511
   Posted 4/17/2015 11:19 AM (GMT -6)   
Hey Solomon,
Just saying this because I've lived thru it: you just had your takedown 7 or so days ago. It takes time to heal and adjust. It's way too soon to say you shouldn't have bothered with the j pouch. Happy healing!
Marianne
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
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!
Inability to absorb iron. Infusions every 4 months.

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 4/17/2015 4:10 PM (GMT -6)   
@Virident thanks, that makes me feel a little better. I'm taking VSL#3 already. Not sure about oil of oregano with a probiotic, I think that the two would be counterproductive together (probiotic and antimicrobial). The pepto bismol probably just provided GI relief.

@ByeByeUC: I know that it's early. What's bothering me more is the pretakedown cuffitis and symptoms that seem related. Surgeon says it should all work out but UC has taught me to take doctors with a grain of salt. I'm going abroad late next month for quite a while and its time to start living life and not UC. While I had my temp ileo I realized that I would have been satisfied with being a permanent ostomate.

Thanks for the support. I hope to have positive updates over the coming days/weeks/months. The good news so far is that I am 100% continent (even if holding it is crazy painful).
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

buckeyecrohnie
Regular Member


Date Joined Apr 2014
Total Posts : 86
   Posted 4/17/2015 5:48 PM (GMT -6)   
Solomon I am about 9 weeks out from my takedown. I had an ileus after the surgery and was in the hospital for 7 days. When they put in a ng tube in, I questioned whether I had made the right choice. Today I can say that I am so happy with decision I made. I am able to pretty much eat whatever and today I drank two beers for the first time in forever. I have also noticed this week that I am able to wait for the restroom for a longer period of time. Give it some more time! From a fellow CCF patient!
34 year old Female from the Buckeye State. Initally misdiagnosed Crohn's Oct 2013. 2nd opinion at Cleveland Clinic rediagnosed Severe Pancolitis/Ulcerative Colitis Jun 2014. 3 recurrences of C-DIFF Spring 2014. Fecal transplant May 2014.

Failed Meds: Asacol HD, Prednisone, Humira, Flagyl, Vanco, and Dificid
First surgery: 6/7/14 J pouch and loop: 10/22/14 Takedown: 2/13/15

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 4/17/2015 5:55 PM (GMT -6)   
Hey Solomon, I've had mild cuffitis ever since my takedown, maybe since before. It bothered me more in the first few months but now (almost two years!!) it really doesn't affect me. The biggest issue I noticed was that I felt more affected by eating foods that could irritate my cuff on the way out, like veggies and nuts. That said, I don't notice problems anymore related to my cuff.

I had the same feeling that I could have been OK with a permanent ostomy but in the end I'm really glad I went for it. I hope you will be feeling the same way soon!
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

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1200
   Posted 4/18/2015 7:39 AM (GMT -6)   
Thanks for the update. Daughters takedown was 3-23, so just a bit ahead of you. Big improvements just lately, so hang in there. I wholly agree that the last surgery was tougher than expected. It is easier for the surgeon, not the patient! Spent a full 7 days in the hospital, and the frequency of D was reminiscent of the old days. Now down around 7. Immodium helped a lot. No urgency,no pain.
I too was/am worried about that darn rectal cuff, as most of my girls trouble was rectum. Surgeon optimistic, feels it will be just fine due to his stapling technique. So far, no signs of trouble.Fingers crossed for us both. They said to expect slow steady improvements for up to a year, so don't give up too fast. The small intestine eventually starts to do some of the colons job-I'm hoping it does a better job than the ones we threw out! Keep us posted, ok?
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), more Pred. Pancolitis, not just Left sided.Retried Remi. Entyvio, didn't stop train-surgery Step 1, 8/28/14 Step 2,12/05/14 Step 3 Mar.23, 2015

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4511
   Posted 4/18/2015 9:41 AM (GMT -6)   
Katmom said...
I too was/am worried about that darn rectal cuff, as most of my girls trouble was rectum. Surgeon optimistic, feels it will be just fine due to his stapling technique.
My rectum was in horrible condition. Knock wood.....I haven't had any issues at all and I was concerned in the beginning too. My sister who also has a j pouch had a lot of rectum disease too. So it doesn't necessarily mean there will be trouble with that bit of cuff. This is where the skill of the surgeon is so important.
Marianne
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
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!
Inability to absorb iron. Infusions every 4 months.

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 4/24/2015 10:16 AM (GMT -6)   
Monday I asked my surgeon for a scope before we made the long drive home. My pouch looks great, including the cuff...

Which is why I don't understand why I'm having such a rough beginning. I'm actually having some slight leakage, which doesn't bother me too much except for the fact that it irritates my bottom. After the ride home, my bottom was in really rough shape. I'm still recovering.

Right now I'm dealing with (internal?) butt burn, anal irritation, 20x BM daily, and some very difficult gas pains. I'm in the bathroom quite a bit and am extremely fatigued from not sleeping. It's hard to feel good about the decision I made right now, but after the scope my surgeon said to just give it more time, so I will. I'm going abroad for an academic fellowship in a month, and he said I should be good by then. If I'm not I will be very upset. I hope to have better updates soon.
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 : 4403
   Posted 4/24/2015 10:38 AM (GMT -6)   
SS,

You have to measure your progress in months, not weeks or days.

I never had the frequency or butt burn but I was exhausted for many weeks after my take-down surgery. You have to be patient and wait for your body to heal.

I do remember the gas pains, they were very painful. I would take hot showers or baths and that would help me but there was no cure for the gas. Gas-x didn't work. Sometimes if I laid on my left side I could release the gas.
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 : 135
   Posted 5/12/2015 8:24 AM (GMT -6)   
Update: Over one month.

Honestly, it has been very difficult and often disappointing since takedown. The first three weeks were absolute hell, worse than uncontrolled UC. Since things were really bad, I had my surgeon scope me one week out to make sure there was no clinical issue, just "normal" adaptation. He told me that everything is fine and I just have to tough it out, so I went home.

After three weeks, frequency has become livable, but I still experience frequent rectal discomfort. My diet is pretty limited and I generally am sleep deprived (which is the worst).

I hear this constantly from everyone: it takes time. I realize that. I intend to give this the intended year and hopefully post about my good sleep quality, minimal discomfort, and 4-6 daily BM's.

That said, I am really upset. My quality of life is NOT meeting the expectations that were set for me by my surgeon. I am dealing with a lot of what I dealt with when I had UC. I am upset that instead of using the word "colectomy," my doctors said "jpouch surgery." The ileostomy was only presented as a backup plan, whereas I now feel like it is a short-cut to happiness, if nothing else. It is just unimaginable to most doctors that 20 something year old would NOT go for the pouch, whereas I now know that if you can handle a stoma the quality of life is equal and much more predictable.

I often hear "my quality of life is much better than UC." This is definitely true, but also reflects the popular fallacy that the options are either battling UC or getting a jpouch. My question right now is: "when will my quality of life be equal to that with an ostomy?"
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 : 14539
   Posted 5/12/2015 10:20 AM (GMT -6)   
Oh wow, this is disheartening to read. I figured you would have a quick and easy transition since things have worked out so easily for you up until this point. You really have to give yourself more time but I didn't expect you to be back feeling discouraged. I thought you were going to be saying you wished you had done it sooner! Try not to get down, do your best, you will be going 4-6x with no urgency or worry about accidents very soon. Please keep me updated. I am out of medical options so I research surgery a lot and it's always great to hear real people's experiences.
Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: entyvio / Apriso

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 5/12/2015 10:27 AM (GMT -6)   
Solomon: do you have a bidet? Are you using any kind of topical for rectal irritation? What are you eating? Have you experimented with fiber, Imodium, or probiotics?
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

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4403
   Posted 5/12/2015 10:51 AM (GMT -6)   
Solomon,

A month out I was still moving slow and limping around. I didn't expect to feel better 30 days out, I was looking at it in terms of 3 months, 6 months and 12 month time frames. I've heard most people say that it takes at least 3 months to recover from "most" surgeries, not just CR surgeries. Yeah it sucks because the last thing that you want to do is wait to feel better after suffering with UC for all these years.

From my experience I've had strictures appear or reappear 2 weeks after being dilated. If things aren't improving then it's ok to ask to be looked at(scoped) again.

Pluot offered you good suggestions. You could also try adding some carbs like rice, pasta, and potatoes to your diet it might help "bind" things.
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

ladygolfer1119
Regular Member


Date Joined Dec 2009
Total Posts : 65
   Posted 5/12/2015 11:52 AM (GMT -6)   
I agree with everything said already. One month is nothing. I am at almost 4 months and things have gotten MUCH better than they were at 1 month. My old ostomy site hurt a lot at 1 month and so did my butt! But after getting the bidet sprayer (HomeDepot - $35) and regularly using A & D that all cleared up. I still get burning occassionally but that is usually because I ate or drank something that was irritating. I absolutely hated my loop ileo (never had an end ileo so can't relate to that) but my J-Pouch is so much better than UC or the loop! I take 2 metamucil (actually Sam's club generic) tablets each morning and very occassionally some Immodium if things get too loose. I am able to do whatever I want (including 18 holes of golf, zumba, shopping, etc.) without worrying about it. I always knew the bag was there and because it was a loop emptied it a lot. I am more than satisfied with my J-Pouch and am thankful that I was a candidate.

Vicki
Age - 58
Current meds: Apriso, Humira, Prednisone
Past meds: every 5-ASA, 6-MP, etc. etc.
Opting for surgery!!!

Step 1 J-Pouch surgery 10/14/14 - NO MORE DRUGS!
Step 2 Takedown 1/23/15!!!

Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 1200
   Posted 5/12/2015 12:42 PM (GMT -6)   
Sorry, SS. Imodium helped a lot. Lots of it too- up to 8 per day is ok. my D thought the RX for them worked better and didn't make her nauseous ( tho there is no logical reason for the difference). She didn't like the menthol cream given at the hospital for burning, used a baby paste of some sort just to keep the acid from touching. She doesn't sleep well either, but it's not related, I don't think. She has a script for Ambien in case the sleeplessness lasts multiple nights- feels much better to knock out and sleep deeply once in awhile. Watch your "moods" too. 80% or more of Serotonin is made in your gut, and your gut has 5 1/2 feet less gut to make it. Might impact other systems. Keep us posted.
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), more Pred. Pancolitis, not just Left sided.Retried Remi. Entyvio, didn't stop train-surgery Step 1, 8/28/14 Step 2,12/05/14 Step 3 Mar.23, 2015

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 5/13/2015 10:47 AM (GMT -6)   
NSSG: Let me be clear, Jpouch life (except for the first three weeks after takedown... that was unspeakably bad) is much better than UC. Uncontrolled UC does not merely mess up your quality of life, but will have long-term health consequences. If you cannot control your UC with meds/diet/etc. colectomy is the right choice medically and personally. What I urge you is to look into ostomies. Consider a three stage procedure, letting you try an end ileostomy, which you may keep if you wish.

I say this because while jpouch success is good, ileostomy success is... definite. I am taking 8x immodium, metamucil/questran sometimes (I don't think it does much for me), VSL#3DS, using a bidet, wet wipes, calmoseptine ointment, Balneol for the anal canal, HC suppositories (while my cuffitis appears to have been mostly diversionary, maybe not all of it was), and the occasional painkiller/sleep med. I am highly proactive in doing my best with pouch symptoms (I'd go crazy if I didn't).

What is so difficult emotionally is that with my ostomy.......... I didn't have to do any of that. I didn't have to think about any of this stuff. There is no risk of pouchitis, cuffitis, no anastomotic strictures, no continence outcomes, no nothing. There is less surgery done on your body. I wouldn't be waiting months, up to years, to find out if I'm going to have an acceptable quality of life. With my ostomy, once I recovered from the surgery itself, my quality of life was normal. With my ostomy, there were challenges, but I was able to resolve them by being creative with my hardware. No pills, just a different kind of tape or bag.

I'm not able to eat the paleo diet that I love (instead eating bland junk like pasta and rice), I'm having to work so hard to get good sleep, going out of the house is a challenge, and I have not been the same mentally/emotionally since takedown.

I went through with takedown because I already had my jpouch and I didn't want to either recklessly do pouch excision or just leave a disconnected pouch in place (not good either). My plan is to be patient and (hopefully) reach the expectations my surgeon set for my jpouch. I remember my surgeon saying "you should have no urgency, no discomfort, no bleeding, and 4-6 BM daily with one at night. Most people do not have any complications."
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

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4511
   Posted 5/13/2015 11:12 AM (GMT -6)   
I know you know this but I will say it anyway because I've been thru it.....one month is not enough time for you to know how your j pouch is going to function long term. You are still healing and your body is still trying to get used to its new plumbing. Patience is the best advice right now even though it's easier said than done. What your surgeon said to you is the norm for the majority. Hang in there.
Marianne- age 46
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
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!

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4403
   Posted 5/13/2015 2:04 PM (GMT -6)   
SS,

Long term you might be better eating a Paleo diet, it will reduce the chance of bacteria over-growth. Bacteria feed off of carbs, so the less carbs you eat the less chance you will have SIBO or Pouchitis.

With that being said your pouch is young and you're struggling with frequency right now; carbs like I suggested in my post will bind together and hopefully slow things down.

My pouch works much better when I eat a paleo diet; I just switched over a few months ago.

Their is stronger meds than immodium that you could use but you'd need script from your doctor for it.
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

Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2500
   Posted 5/13/2015 5:41 PM (GMT -6)   
SolomonSeal said...
I say this because while jpouch success is good, ileostomy success is... definite. I am taking 8x immodium, metamucil/questran sometimes (I don't think it does much for me), VSL#3DS, using a bidet, wet wipes, calmoseptine ointment, Balneol for the anal canal, HC suppositories (while my cuffitis appears to have been mostly diversionary, maybe not all of it was), and the occasional painkiller/sleep med. I am highly proactive in doing my best with pouch symptoms (I'd go crazy if I didn't).


Don't idealize ileostomies, though -- there are a lot of risks associated with permanent ileostomies that j-pouchers avoid or minimize. For example, the risk of bowel obstruction is much lower with a j-pouch than with an ileostomy. So is the risk of prolapse and hernia. Not that it's important for you, but fertility is much better in women with j-pouches than women with permanent ileostomies. The list goes on -- there are definitely problems associated with ileo QOL, we just tend not to hear about them because they usually emerge after years and years, and not many UC patients keep ileostomies for that long anymore.

I would want to wring my neck if I gave myself this advice, but I'll just throw it out there... you're using a lot of different things right now, probably so many that you introduced multiple treatments at the same time and would have no way of knowing if something is making you feel worse. I can tell you with certainty that my pouch cannot tolerate Metamucil or VSL. I experimented with both of them in attempts to "fine tune" my pouch that was already behaving pretty well, and they made me feel much worse. You might consider rotating *out* one thing at a time and see what happens.

NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 9245
   Posted 5/13/2015 5:52 PM (GMT -6)   
Pluot said...
Don't idealize ileostomies, though -- there are a lot of risks associated with permanent ileostomies that j-pouchers avoid or minimize. For example, the risk of bowel obstruction is much lower with a j-pouch than with an ileostomy. So is the risk of prolapse and hernia. Not that it's important for you, but fertility is much better in women with j-pouches than women with permanent ileostomies. The list goes on -- there are definitely problems associated with ileo QOL, we just tend not to hear about them because they usually emerge after years and years, and not many UC patients keep ileostomies for that long anymore.


Cheers for this. Makes me feel a teensy bit better about going for reversal surgery.
Dx Crohn's in summer of 2000. (Yay skull)
Tried and failed: 5-ASAs, Azathioprine, 6MP, Remicade, Methotrexate, Humira.
Diet didn't make any difference either.
Became steroid-dependent.

Had surgery 2/13 - subtotal colectomy with end ileostomy. Currently on no meds and in remission. Also prone to depression and anxiety. Ask me anything >_>

SolomonSeal
Regular Member


Date Joined Jul 2014
Total Posts : 135
   Posted 5/13/2015 10:53 PM (GMT -6)   
Keith: I agree that paleo is better long term. I have been planning on it for pouch health and general health since before any of the ops. But as you also said, it doesn't seem to work well at the beginning. Right now white rice seems to be the best for me and I am trying to see if I can get better nutrition out of green smoothies. Resuming a healthy diet is one of my top long-term jpouch goals. Low residue is absolute trash, in every sense.

Pluot: I respectfully disagree. In regards to obstruction (especially blockages that seem to repeat themselves), this is generally a result of adhesions. Since jpouch creation and takedown require more surgical dissection and manipulation, more adhesions form, making pouch surgery more prone to blockages. Stomal hernia and parastomal prolapse are much more frequently seen among obese/overweight (something you have more control over). I also think that ostomates should prophylactically wear parastomal hernia support belts (I did). In any case, the complications for a jpouch are more significant and tend to require pharmaceutical or surgical management. Pouchitis, cuffitis, anastamotic strictures, pouch dehisence/prolapse/twisting. Continence becomes an issue and there are greater issues of discomfort from the jpouch.

I think that the medical community has it backwards. As was the case with me, it is suggested that anyone who CAN get a pouch should. I think that it would be wiser if people were advised to consider whether they could live with a stoma before going for jpouch. Much of the problem is that people do not go all out in optimizing their stoma hardware or just "don't like" having a stoma.

At the time, I was offered a two step procedure, had talked to two/three different jpouchers who assured me that they live normal lives without issues, and my world class surgeon suggested that I should have an excellent outcome. I did not know whether I would handle an ostomy well or not, and getting a permanent ileo seemed... too permanent. Now I feel like the benefits of the jpouch are lesser than the added risks and suffering to reach the 1 year post-takedown mark. I'm not saying this to whine, but rather because I think that I and others are poorly served by the default-ness of the jpouch. NOBODY my age is encouraged to consider an ostomy, and all the nurses referred to my reversal as "the happy surgery." My happy surgery wasn't when my stoma went away, it was when my UC symptoms went away.
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

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5687
   Posted 5/14/2015 7:24 AM (GMT -6)   
Solomon Seal,

What you are completely overlooking in your comparison of an ostomy and a jpouch is that fact that with an ostomy there is no learning curve with the intestine. Waste just empties in a bag. Simple. With a jpouch you have a newly created false rectum that needs to learn how to function as a colon/rectum. There is an adaption/learning phase for this to occur. I'm sorry if you set your expectations high for recovery; it can take a full year to become predictable. However, within that year you should see gradual improvement. Patience will be your best friend. Keep a food log, measure transit times and comfort. It will get better. And do something to get your mind off your butt. Walk, volunteer, stay busy and active.

Sue
Moderator, Ostomy Forum

Ulcerative Colitis- 1987-2001
2001- opted for j-pouch surgery

ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 4403
   Posted 5/14/2015 8:36 AM (GMT -6)   
I agree with Suebear, you had an Ostomy for 3 or 4 months but your comparing your j-pouch of about a month to the Ostomy. It's not a fair comparison; especially when it takes longer for an j-pouch to work properly than an ostomy. You really need to give it some time.
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

ByeByeUC
Veteran Member


Date Joined Feb 2011
Total Posts : 4511
   Posted 5/14/2015 11:26 AM (GMT -6)   
I know people want instant gratification with their j pouch but it just doesn't work that way. For some it takes time. And it shouldn't take an entire year but it may take a few months. Think about what a HUGE procedure it is. My surgeon warned me things could be crazy for a while. Sounds like your surgeon gave you the long term outcome but didn't warn you about the immediate post op stuff. Be patient and good to yourself. It will come together....just may not be right this minute.
Marianne- age 46
DX Pancolitis in 2005. Family history of UC.
Tried every drug-even Remicade & Cyclosporine-Tried diets-nothing worked.
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!

Post Edited (ByeByeUC) : 5/14/2015 5:46:20 PM (GMT-6)

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