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

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)

@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

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!

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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 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.

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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.

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.

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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

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.

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Co-moderator: Ulcerative Colitis
Diagnosed with Pancolitis, Laryngopharyngeal Reflux & Migraines. Battling Extreme Exhaustion.
Currently: entyvio / Apriso

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.

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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

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.

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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

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.

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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!

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.

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

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