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Hi J Pouch friends - I have a technical question that I can’t get a surgical answer to for a few weeks.  I am now in between step 2 and 3 of my J Pouch - it’s created and sitting in wait.  Some following my story may know that I have very high output from my loop for 3 months - some days up to 4,000 ccs.  We seemed to have figure out why - I was just diagnosed with another auto immune disease, this is of my mast cells - potentially triggered by the removal of my colon itself.  There is limited treatment for it, and one of the symptoms is increased gastric output in normal people, which translates into high output for ostomy folks.  I may never slow it down.  So, I have been greatly cautioned by my GI doctor to not do my takedown with 4,000 ccs of output, and potentially cut my risk and go to an end ileostomy.  My surgical team is against it.  I just want to be done with the fear and I like my ostomy, even though it’s high output.  I want to go to an end.  Question 1) does anyone know how long I can leave my unused J Pouch sitting there diverted, months or years?  Question 2) How hard is it to convince a surgeon to take out a good J Pouch, that my body can’t work with.  It seems almost impossible to get him to agree in the short run.  But I don’t want to destroy my life to prove the J Pouch will fail.

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DougK,

Those are great questions but I am not familiar enough with this mast cell condition to know what the answer is. I have actually not heard of that condition. I would suggest you may want to start a separate thread called "Mast Cell Autoimmune Disorder After Colectomy" and see if that yields any hits with persons having the same issue. I wish you the best with it and hope you can resolve this dilemma. Like Scott, I am curious about why the GI thinks the J pouch is destined to fail, apart from the fact that you may have up to 20 BMs a day. That doesn't necessarily equate to a fail in my mind and I want to know what the reasoning and analysis is behind the conclusion.

Last edited by CTBarrister

Doug, I’m in no way minimizing the impact of frequent bowel movements - this would be a big deal, though purely speculative right now. Unfortunately (in this speculative high-output scenario) you’d also face rather frequent emptying of an ostomy bag as the alternative. Both require regular access to a bathroom, at whatever frequency your output dictates. In either case (J-pouch or end ileostomy) your actual output is likely to be appreciably lower than with the loop. It’s way too early to start counting bathroom trips, I think.

I would not make any sudden decisions.  Do your research, please request a consultation appointment with your surgeon, and consider additional opinions. You may want to consult with an allergist, or consider a teaching hospital. 

I did a quick search for you, and found this interesting article:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3033552/

If this is what you are experiencing, I would investigate the possible treatments:

Antihistamines H2 antihistamines are targeted to decrease hypersecretion of gastric acid and can be helpful for treating the gastrointestinal symptoms of diarrhea and abdominal cramping. Ranitidine 150 mg orally every 12 hours or famotidine 10 mg orally every 12 hours can be used. H1 antihistamines can control flushing and pruritis.26 Patients evaluated in the study by Jakate and coworkers showed significant symptom improvement with H1 and H2 antihistamines.6

Cromolyn An inhibitor of mast-cell degradation, cro-molyn can be used at a dose of 100–200 mg orally 4 times per day. Small studies have shown improvement in gastrointestinal symptoms with cromolyn therapy.26,27 In a large multicenter trial evaluating 428 diarrhea-predominant irritable bowel syndrome patients, oral cromolyn was compared to elimination diet. Symptom improvement was seen in 67% of patients treated with oral cromolynsodium (1,500 mg/day) for 1 month compared to 60% of patients treated with elimination diet.28

Antileukotriene Drugs Although antileukotriene drugs such as montelukast may cause abdominal pain, they have shown improvements in pruritus and flushing.29

Budesonide If the aforementioned, targeted therapies fail, 9 mg daily of oral budesonide can be used as an alternative treatment.16

Exclusion Diet As food allergies have been proposed in the pathogenesis of irritable bowel syndrome, patients with mast-cell infiltration may benefit from allergy testing and exclusion diets.21 The role of non-IgE delayed type 4 reaction is unclear in gastrointestinal food allergies. Diagnosing specific gastrointestinal food allergies is difficult, as IgE immediate type 1 reaction is rare. Methods such as skin prick tests and RASTs for IgE suggest that sensitization to certain allergens may develop. However, a positive test implies a food allergy without a clinical reaction.30,31

A 2-week diet excluding certain foods should be adequate to assess response. Gradual reintroduction of foods accompanied by the development of symptoms suggests the presence of trigger foods. A meta-analysis reviewing 7 studies of elimination diets in patients with irritable bowel syndrome suggested that milk, wheat, eggs, and foods high in salicylates or amines consistently exacerbated symptoms.32 Desensitization injections have been evaluated as a possible treatment, but inadequate evidence exists in IgE-medicated reactions to support their effectiveness.

In conclusion, the authors believe that mast cells may play a common but, heretofore, underappreciated role in gastrointestinal diseases and thus recommend that patients with chronic unexplained diarrhea undergo colo-noscopic biopsies with special mast-cell stains.

Answer 1; I am soo sorry Doug!!!! You have been through hell and back at this point. You can leave the unused J-pouch in for years. I have heard of people and even watched videos of people leaving in their rectums, colons and J-pouches for years while having an ileostomy- the highest amount I heard of so far was 8 years, I am sure its more.

Answer 2: I am sure if you express your feelings to the doctor, he will understand.

I do not appreciate the comment "20 bowel movements a day is a failure". As a person that is in the 9 percentile of going 13-20x a day, I can honestly say is not a failure. I live a great life with my pouch and I get work done as the other 9 percenters in our community. We 9percenters keep living and work around our pouch. We 9 percenters that are healthy do not have a failed pouch and its most certainly not a failure.

DougK

I don’t want to sound callous, but I want to approach this as a decision making problem as we do in my profession, to hopefully give you an objective perspective.

You have two options with two different outcomes, under some simplifying assumptions, therefore 4 different scenarios. Each scenario has different costs (sorry for the terminology, but that is what we use) and rewards associated with it.

1) You try the j-pouch, and the results are satisfactory. Then your reward is a life without an ostomy. It is a big reward! The reversal surgery at this point is a very minor procedure, so cost associated with is is very small.

2) You try the j-pouch, and the results are not satisfactory. Your cost will be the suffering and the emotional turmoil of the process, the length of which depends on how long it would take you to accept that it is failing, or how bad it gets and how fast. The takedown surgery is also a cost, although small. One reward is that you will know that you at least tried, and will not wonder forever what would have happened if you had tried. One more cost is that you might have to remove the pouch one day, however this is a possible outcome of all but the first scenario. The end ileostomy surgery is also a cost, again in all but the first scenario.

3) You get an end ileostomy, and the results are satisfactory. One cost is always wondering what would have happened if you tried the pouch. Having the surgery to create the end ileostomy is another cost. Finally, you might need to remove the pouch one day. The reward is that you might have avoided a possible difficult experience with the pouch. That bag is an inconvenience and also a convenience at the same time, because we assume the results are satisfactory in this scenario. So, I think the reward and the cost of living with the bag cancel each other out.

4) You get the end ileostomy, and the results are not satisfactory. I don’t want to discuss this scenario.

To make a decision, we sum the total rewards and costs of all scenarios for each option (pouch vs ileostomy), and compare them. The total sum of rewards on the two j-pouch scenarios (satisfactory and unsatisfactory) are much higher than the sum of rewards in the end ilesotomy scenarios. The costs are, in my opinion, comparable. The methods suggests: take the j-pouch path.

Of course, this an ultra simplified view of the outcomes. If trying the pouch will cause you to lose your job, or lose your mental health due to the turmoil it will cause, then it is not as good a scenario. I am not trying to cover every possible outcome that could happen. I am trying to show you that your thinking here “But I don’t want to destroy my life to prove the J Pouch will fail.” is not strongly justified.

Last edited by Elif

Doug K.... I am a 9%er....my average is 14 to 16 times a day. I have been back to work for over a month.  I work for an energy company and work in the field... all over the county at various customers homes. I was very afraid with my frequency and the Covid shitting down most public rest rooms.  It has been a huge adjustment for me. So far I have performed my plumbing style duties and have arranged my eating habits to hit the restrooms on and around my breaks. It hasn’t been perfect but I would say it’s far from a failure.  In fact,  I am currently working 12 hrs per day. I also considered skipping the pouch but made a promise to my self to give it a go for that first year...I’m 4 months post take down and happy that I did it... I wish the best for you ......  none of this is easy ... just consider the pouch... I’m 14 plus BM per day and not even close to “house bound”.

These are great supportive answers and I really appreciate the help.  Lauren, I am sorry to offend you.  You know that is the last thing I wanted to do. It’s been a hard 3 months and I don’t always say the right things - my head is not in the right place.  I am literally dying of thirst and get no sleep.  I hope you accept my apology.   Elif, I like your cost/reward analysis- very logical.   I will employ that now.  Thanks all.

@Ryan138 posted:

Doug K.... I am a 9%er....my average is 14 to 16 times a day. I have been back to work for over a month.  I work for an energy company and work in the field... all over the county at various customers homes. I was very afraid with my frequency and the Covid shitting down most public rest rooms.  It has been a huge adjustment for me. So far I have performed my plumbing style duties and have arranged my eating habits to hit the restrooms on and around my breaks. It hasn’t been perfect but I would say it’s far from a failure.  In fact,  I am currently working 12 hrs per day. I also considered skipping the pouch but made a promise to my self to give it a go for that first year...I’m 4 months post take down and happy that I did it... I wish the best for you ......  none of this is easy ... just consider the pouch... I’m 14 plus BM per day and not even close to “house bound”.

I love seeing other Happy 9%ers like myself on here! I love that we have 9%ers on here because it shows our community that people can in fact be happy as a 9%er. Thanks Ryan for coming in on this!

Last edited by Lauren Of Emerald City
@Doug K posted:

These are great supportive answers and I really appreciate the help.  Lauren, I am sorry to offend you.  You know that is the last thing I wanted to do. It’s been a hard 3 months and I don’t always say the right things - my head is not in the right place.  I am literally dying of thirst and get no sleep.  I hope you accept my apology.   Elif, I like your cost/reward analysis- very logical.   I will employ that now.  Thanks all.

I accept your apology, I appreciate that! Things will get easier for you. Being a 9%er sounds hard but once one becomes one, the body adapts and everything is fine. I have been a 9%er for 6 years and I am completely happy- I honestly would not change a thing, I am happy to be a 9%er.

I definitely think you should try the pouch since you are soo close and you never need to think "WHAT IF"? Whatever you choose for yourself, I am sure it will be a great choice Good luck with everything.

Last edited by Lauren Of Emerald City

Hi Doug, I see you are still having the heavy output issue, are you still getting the hydration infusions?
I’m sorry to see you going through this still.But if you can at all stand it, try very hard to get more time in for your body to possibly adjust. Sometimes the frequency seems just unbearable, and especially now, so much added stress in everyone’s lives.

As some others have suggested, talk to your physicians again, I know you have great ones, and ask for as much info as possible. Which is not always , of course available. Time is needed to heal though and you don’t want a lifetime of regrets if you make the wrong decision out of frustration.

I’m sending you and your family the best wishes that you find good health and healing very soon,

Hi Doug,

I'm sorry to hear all you are going through and having to navigate a new diagnosis to boot, ugh. I would work to try to get some kind of consensus with a GI/surgical team (and the specialist treating your new autoimmune disease?), even if it means second opinions, these are big questions to consider and you deserve all the information to make an informed decision. You can always try the J pouch and go back to an ostomy, wheras an end-ileo is permanent. It might be worth trying the J pouch as you'd have a bit more bowel being used, plus a reservoir, so your output may not be quite as bad as your ileo.

To answer your question number one....I just went through this with my surgeon as I diverted my  J pouch to a loop ileo. She said "at some point" the J pouch would need to come out if i opt to keep my stoma, but said we're talking years, not months. My understanding was that it can stay in there for a while as long as it is scoped regularly to keep an eye on it....of course ask your physicians, but this was what I was told just last month. My J pouch is 20 years old so i don't know if that makes a difference.

All the best to you!

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