I have to ask. General pouch question.

I am wondering myself, how long does it take to have the pouch do it's thing without causing pain and anxiety. I am just four months from takedown and have issues with frequency and accidents but most of all feeling like there are razor blades up inside me. Can't make plans because I never know how I will feel. On a very restricted diet. Just want to get my life back!

Hello Judyk.
Four moths out I was dealing with so much I knew it would take the full 18 months they say it would be to see if it's gonna work right.  Give it more time.
Although mine is not gonna work in that 18 months I saw improvements but they were so slow to see and feel. 
Hard to explain but it would take weeks to notice this or that was not happening. 
Others will chime in on the healing process.
It's slow.  Takes a long time for some to have you body adjust.  It's a major change to go from a colon to a pouch.
I wish you the best.  Hang in there.
Richard.

I think a lot of people fight for their pouch to be "accepted" by society.  To hopefully be considered part of the mainstream normality like everybody else.  You are lucky that you have a partner / wife who accepts you with or without a "bag".  I'm considering dating again (it's been 3 years of continuous trauma) and I will hold off on explaining my pouch issue for quite a while.  Of course, I will have to explain the limp (from a recent car accident), because it is "visible", but my pouch is not.

I remember having more discomfort socially / physically with a bag.... leakage, noises, raw skin, etc.  I have pouchitis (again), but it does not interfere with my social interactions.

I can see that.
I have been married too long... Lol.
Didn't even think of that and it is true.
Yes I am very very fortunate that my wife accepts whatever happens.  She just wants me healthy.
And our lives to go on.  I can see that too.
I cannot imagine how difficult it would be not to have someone while going through this.
That... What you said above answered most of the question in one post.
Thank you.
Richard.

There is no one answer to this. It is multifactoral. Each of us has our own threshhold of what is unacceptable function. Some people consider their pouches to have failed if they have to take any maintenance medication. Others are fine with it as long as they tolerate the meds. some people had such terrible times with an ostomy, they vow never to return to it. Sure, there are body image issues too, and these issues should not be dismissed.

 

Part of the problem is that ileostomy is not a perfect solution either. It does not always fix all the problems, and new ones can develop. There is no solution to restore you to the point you were before you developed whatever problem that necessitated a colectomy. 

 

I also think that we tend to have hope that better function is right around the corner if we are patient. That is not a bad thing. The tough part is figuring out when you have been patient enough and it is time for a change of tactics. You just have to pick your poison I guess. It is a personal decision because what is right for one is wrong for another.

 

Jan

JAN,  The pain I am experiencing is fairly new. My reversal was done April 1st then in May my Gallbladder went on the fritz and had to be removed. I am seeing a nutritionist and she has me on a low fodmap diet (no lactose, no gluten, no high fructose corn syrup, basically low or no foods containg fodmaps) I was feeling much better between this diet and doctor putting me on a cholesterol med. Past few weeks feel as though I have razor blades in my anal canal. My whole colon and rectum were removed back in Nov. The pouch itself seems to be working. If I didn't have this crazy pain I would be happy with the pouch. It's just that every time I go It's passing by this place that feels torn. Not sure what to do. I see my GI Doctor today. JudyK

What you describe sounds exactly like an anal fissure. Usually it is caused by straining at hard stool, but for us, it is from straining at loose, caustic stools. Oral pain meds do little to nothing for it. Your doc should get yo the bottom of this at your appointment today.

 

Jan

When I saw the doctor he was at first trying to explain to me that since I have had multiple issues, since my reversal that maybe the pouch is not for me. I however told him that it was not the pouch that made my gallbladder flare up and it was not the pouch that caused the additional stone in my bile duct and it feels to me like my pouch is working but the pain inside is between my anus and the pouch. IHe did an exam and for sure he found that I do have a fissure. He is treating it with nitroglycerine ointment. He still feels that this will be difficult to get rid of because of the nearness to the pouch and the frequency of bowel movements and the blood flow to the area. I think I may have a consult with the surgeon to discuss al this with the aim at keeping my pouch if I am able. Thanks all, your caring and input means a lot to me.

Richard, 

To answer the question that you initially asked...Why.

Well, I agree that we are all different, have different life styles, needs, egos, body images, partners (or lack thereof) and pain tolerance.

I am a stubborn little thing. I have never known normal. I have never lived without an ostomy scar, IBD, twisted guts etc so I have a high tolerance for pain and agony. I have a very low tolerance for limitations.

I need to live my life to the fullest even if that means hanging around the house with the G-kids and playing in the wading pool. I carry groceries miles, wear a backpack and tight clothing...I take public transportation for hours and stand up in public in front of 150 people at a time...I need to feel secure. My pouch is my security. I taught with a leg-bag but felt so terrified of noise and leakage that I was in a constant state of anxiety.

Imperfect as it may be my pouch is my security blanket. That is me. Not everyone else. 

I take pain meds for sacroilitis and joint pain all over my body. I have blockages.  But I fight for my pouch. I've had 8 or 9 pouch surgeries in the last 10 yrs...would do it again if need be (hope not!).

I perservere. (or maybe I am just a coward!)

We all have a cut off point.  I haven't found mine yet.  

I hope that you find good health and peace at the end of this road. You have suffered enough. I salute your courage...

Sharon

 

 

Sharon.
I have not gone through near what you have gone through.
It reminds me of my wife.  She is in constant pain... Shoulder surgeries.... I have no tolerance for pain. 
But it's not the pain or image thing.  I am pushing 60. Beyond the image thing.  It is the pain though.
It's not knowing if I am gonna get sleep until the minute  I lay  down.  I know.  If I will or nit at that point.
It's days like today that keep me chained to the loo.  The pain and frustration. 
I certainly do not want to go through surgery again.
But days like today tell me I cannot live this way.
It's beautiful outside and I cannot even go out and throw a Frisbee to the dogs... Or wax my car... Simple things.
Blockages... Whoo... I has a partial two weeks ago.  I think I am going through one now.  I am out of my monthly pain meds cause the last blockage I had to double up on them.  I cannot stand blockages.
I would love to keep my pouch but I cannot get t my health back with it.  I have had it two years on October 14th. And I feel worse than when I had my colon.  I am way too underweight. 
My only hope is she can find what may be causing the problem when she opens me up.... But if she finds nothing that would cause all this she wants to take it out and illeo me.  She will not do it unless I agree to the illeo if she finds nothing.  Which is only right. 
She is concerned that I keep losing weight and didn't say it but I know she sees me wasting away. 
I am rambling.
Thank you Sharon

I too have the issue with the weight loss. Started out this journey at 167 and currently at 114. That's one year. Sounds like you are making the right choice for you. I too, am so anxiety ridden about making the simplest of plans. This is not living. I can't even say, "It was nice while it lasted." There's got to be a better way. Take care  Judy K

Judy.
It's a tough decision.
But I am done. 
It is a cycle of fair days and just flat out bad days.
Like yesterday.  It was bad.
I am going to have it done.
I cannot live like this anymore.
I see my surgeon tomorrow and am gonna ask for the surgery as soon as possible.
I don't know if it will stop what's happening.
I'm scared... But I won't know if it will stop unless I do it.
I know I have lost even more weight over the weekend.
I was chained to the bathroom all day yesterday.  Everytime I moved I had to go.  And just a tablespoon would come out.  I must have done that up to 40 times yesterday.  That's no way to live. 
I have to work today.  I only hope it's settled  enough to work.

This is a P S to the above post.
I look or think I am just opening a can of worms and trading this pouch problem for a bag problem.
And the latter is the end.
It's the last thing that can be done and if I still have problems with the bag.... Which I know I will have some just adjusting.... But if it is not the Pouch.. I am in trouble.
If it's my small intestine or stomach it will be what I have to live with the rest of my life.
That.... Is what scares me.  The unknown.

Richard,

Why not discuss an exploratory laporoscopy...not a big open surgery but something that is more a diagnostic tool than a practical case of blackmail...I hate those 'either this or else' cases...I refuse outright to be put on the spot. You are suffering, losing weight, in pain and sleepless...you do not need for your surgeon to add more stress to your  life....I had one that kept telling me that he would go in and if he couldn't fix it ( and he pretty much promised that he could not!) he would yank it and give me a bag anywhere he so chose...when I refused he said fine, he would wait until they brought me into ER and then do it without my consent!

I ran.

I finally found a gentleman surgeon who respects his patients and their personal needs...he does minimal surgeries, almost always through laporoscopy when possible and only does what he feels is absolutely necessary.

He listens too.

Last xmas he went in blind, taking my word for the pain and blockages I was suffering...put my pouch back up on the wall (it is partially down again...such is life), lazed some adhesions and unglued a loop of bowel that was stuck to the wall...all without opening me up or over cutting.

It hurt, ached and still makes my eyes water but I am better.

Find someone to listen to you first before they cut you!!!

sharon

 

She listens to me.
She is a good surgeon and has an older surgeon backing her up.
She is going to look but if nothing is found I will get the illeo.
I cannot work this way.  Bottom line.  I cannot live not knowing if I can make it to work or get sleep.  Or chained to a toilet every three days...
If she sees something obvious she will fix it and leave it in.  I don't know but am asking if it's open or lapro.
I have an appointment tomorrow.
I just don't have the time or energy to look for another Dr.
And like I said before I will most likely get the same answer.  I have once already with a second opinion.
The surgeon I have is the most experienced in j pouches in the Dallas Ft Worth area.  She does the most j pouches yearly in the metro area.  I don't have the time to go to others.  I have to work.  That complicates the long process of finding and getting it all done through another Dr.
I am done with it.  I give up.  I tried knowing it may not work and would have regretted not trying the Pouch.  But I did.  It's not working properly and after two years it's enough.  I have to face the facts.  And I am facing them everyday.  It's obvious I will not get healthy if I keep going.  It's not just for me.  My wife is watching me waste away.  She would let me do it too.  Waste away.... Not that she is mean... Just that it is my decision.  But she will not stay and watch me waste away.  She has no life with me.  She doesn't care if I wear a bag.  I do. 
I'm rambling again.
Sorry.
Richard

Richard, You have struggled enough with this. I don't know you but I know some of what you are going through. Please put your trust in your Doctor, she sounds like a good one and follow your heart. I am still with the pouch but I swear, if I had been through half of what you have, it would be my decision too. I am praying for you. May you find peace of mind and some quality of life soon.  Judy K

I am talking to her tomorrow.
I am gonna get  scheduled soon.
Thing is I have a temporary crown on my tooth and have to get the permanent one on before I go in.  Sounds silly but it will be awhile before I want to go to the dentist!
If I could do it now I would.
I'm ready.

I hate going to the dentist. I have had several crowns though and once you have the temporary crown, there is nothing to it. They pop that one off and replace it with the real one and you bite down on a cotton ball to make sure the glue holds. No pain, no drilling or sanding down. It really is a piece of cake and takes about 5 minutes. Please don't let that stand in your way!!!!!

 

 

Ask your GI guy about a strong probiotic such as VSL#3 (there is a non prescription version).  Have been off meds for 24 years by taking every day.  Use baby wipes every time and occasionally A&D ointment for butt burn.  My pouchitis never seemed to go away until I started and stayed on VSL#3

I don't have infections or anything like that.  No polyps... No nothing.  No blood... No mucus.... Just does not work.  After this past month I am ready for it to go.  I got two hours of sleep last night.  2nd time in four days.
I have a job and a mortgage. 
I am at my surgeons waiting room right now to finalize removing the Pouch.  Setting the date.  It was November 30th but I can't take this anymore.  I am resigned to an illeo.  I will be much healthier.  I was weighed yesterday.
I lost another pound!  Not the right direction.  I look like walking death.  I feel like it too.  I have no ambition  to do anything.  Everytime I move I get an urge to go.  And there is nothing there but a tablespoon coming out.  I did that all day Sunday day.  I must have gone 40 times. It continues into today which is Tuesday.    I am losing my strength and stamina.  If I wait longer to get more opinions I will lose more and not have the will to pull through this surgery. 
Richard.

As for the VSL#3, my doctor wanted me to use it 2x a day and insurance does not pay for it. It cost $300 for a 30 day supply, can't do that, no matter how good it is. I have the "RAZORBLADE" thing going on and it turns out to be a fissure or a cut on the side wall of my anal canal. Very painful. I am treating it with nitroglycerin ointment which is hard to apply to get it into the anus. So all in all no having fun. Five months after takedown, lots of accidents, lots of pain, and uncertain about what options I have. Don't want to wait another 6 months for things to get better. Started this journey with a bad colonoscopy last October so I have basically watched life go on around and without me since my first surgery last Nov. When is enough, enough??

My insurance company wouldn't cover VSL, but I fought them for a year and they eventually agreed to pay for it (retroactively to when they had stopped paying). I had to go to the state insurance administration after the insurance company blew me off.

Thanks, I'll try to fight it. If it's a medical necessity than I don't see how they can refuse, but they told me it's considered a "medical food" and not technically a drug. Otherwise I have excellent coverage.  I don't abide by all this bullshit. Pardon the pun, (not intended) Judy K

Sounds like the prescription version (double strength).  The non prescription version is 60 capsules for $45.  That should be 2 x day for a month.  You might want to try that

VSL costs about the same (for the same dose) whether you take capsules, single strength (OTC), or double strength (DS, perscription only). You may find a lower dose adequate, and it's certainly cheaper, but if you need the higher dose the only ways to control the cost are 1) insurance coverage, or 2) documented financial hardship.

I have been holding on to my pouch for 20 years.  Prior to UC my husband and I were extremely active and adventerous.  After my pouch my life completely changed.  I just accepted my "new norm" and moved forward.  Due to autoimmune disorder, I now have severe asthma and bronchectasis as well as crohn's.  And continuous bile reflux.  My illness wound up costing me my marriage.  You are blessed to have a wife who understands.  

 

I have been thinking about about removing the pouch for several years now.  I have 2 children and I have been afraid that I would make things worse.  I have continusous pouchitis.  I have tried almost every drug on the market.  Remicade was the only thing to help and after a year and a half I developed Lupus symptoms and had to switch to Humira and 6mp.  No luck.

 

Now, I have no choice.  I must remove the diseased pouch in hopes that I can have the reflux surgery I need to try and control my Asthma.  All in an effort to extend my life.  It will be a difficult journey but I am ready to make it.  

 

Everyone has their reasons for holding on to their pouch.  No one can really tell you why.  

I guess what I am trying to say is... Do not let this control your life.  Do not be scared to make the change.  Do not look back.  Just continue to move forward.

 

Good luck and I pray for you.  

 I have had my J-Pouch for 17 years.  I too struggled early on and it took several years for my pouch to settle down..  You just have to hang with it until your body gets adjusted.   Paying attention to to some very important things

should help you get over the hump.

1. Watch what you eat., no carbonated beverages, no chocolate, very little sugar

    and caffeine. Eating lots of rice, baked potatoes and pasta.

2. I flush my pouch with 4 ozs. of warm water every night about 2 hours before going

    to bed.  And, I take 3-4 lomotil before bedtime. Big time help with getting thru the

    night with only 1 or 2 trips to the bathroom.

3. I now take 2 probiotic tabs every day.  It has made a BIG difference in the frequency

    of getting pouchitis.

I'd advise against taking more than two Lomotil at a time. The atropine gets pretty nasty at higher doses. Take anyone else's dietary advice as no more than an idea you can try on yourself, if you like. There really are *no* dietary rules that apply to us all (other than "stay hydrated"). Most of us don't need to have enemas daily, but a few folks swear by it, and I have no doubt it has helped some.