Please describe the J-Pouch improvements

You need some distractions to get your mind off you butt. I'm not sure if you have returned to work, or not, but do get out of the house and focus on something other than you. It will help you to recover. Go for walks. Everything you are experiencing is normal recovery; embrace it, many of us went through this as well.

Sue

Hi fq,

I am so sorry you are having such a hard time. I had a very rough time as well and couldn't focus on anything else because my whole life revolved around my miserable pouch.

However, it does get better, I swear. Or it did for me. I don't want to lie to you, it was a good 2 years before I was well enough to go back to work and function. I was always exhausted, in pain and going to the bathroom.

But, there were improvements along the way...

6 months out, I noticed the butt burn was far less frequent.

6 months out, I was trying new foods with success.

12 months out I realized I had chronic pouchitis and went on antibiotics which made a huge difference.

2 months out I realized IV hydration was needed on a regular basis and helped alot.

6 months out I started going to a therapist who specialized in EMDR and taught me to visualize things differently and I found someone to whom I could talk to without feeling like an alien. It helped me start seeing the positives and I wished I had started sooner.

Keep the faith, fq. We are all pulling for you.

~Tammy

thanks.

suebear - that is a good suggestion. i go for walks here and there but the weather is so hot i just want to stay inside. i can go out in the evenings, but the pouch is too active. i think it would help get my mind off my butt for some while.

tammy - thank you very much that is kind of you. i feel the same way that i cannot focus on other things and my mind is always on my pouch. looks like things have greatly improved for you, which is wonderful.

i'm hoping this is really just part of "normal recovery", although a stricture and possible fistula is definitely setback.

there is of course the mental adjustment too. it is so much for a person to take, i don't know how some of you do it. this j-pouch adaptation is the most frustrating thing and is taking forever. i guess i can only sit and watch the clock and calendar.

thanks again.

j-pouch : 2 months

fq - I am almost 4 months out and have noticed a significant improvement. I get out every day for at least 3-4 hours and feel really good. Nights are still a little tough and I have a lot of pressure sometimes right after I go but only in the evenings.

It does get better - I promise. I know EXACTLY how you feel. I have been in the house since January.

I get up around 6 am and walk three miles before the heat starts. This morning I had bad edema in my hands and feet so it was pretty painful but I still did it. You just have to fight your way through to being healthy and strong. Some days I feel ok and others I feel terrible but I cannot let myself stay in bed and only focus on my problems.

FQ, this is America, land where fast food started and the problem is that and everything else after that came with it has got us all in that quick fix, instant service mentality. So I understand why you're anxious to heal already. I only wish it worked that way, after over 20 years I've learned the hard way, it's a long ride. I'm still afraid to go out and eat at a restaurant or friend's house after all these years, especially if pouch friendly food isn't lying around. Your pouch isn't going to heal in months, the truth is it's going to take many many years before you feel a difference. And even after all those years be ready to make lots of compromises. Get ready to run into complications too such as Pouchitis, blockage, dehydration, etc. I speak from all I've went through so far. All I can do is pray that my pouch doesn't give me anymore (censored word) now.

Dog Day I am curious why you don't go back to the bag. I read another post by you and you mentioned being emotionally drained but I don't get it. Was your ileo experience worse than your jpouch experience?

BTW I am going back to an ileo here in a few weeks but I can't really understand where you are coming from.

I'm sorry to hear you're unpleased by your J Pouch, Officer Thumb. I would go back to an ileostomy if I felt I had no real choice right now. All I can do is grin and bear living with mine right now. If I'm stuck with the predicament of get a ileostomy or die, I'm afraid I'd have to go back to the ileo. I'm not at that point now and will just grin and bear what I'm going through now.

FQ,
Something you need to understand is that everyone does have different experiences from one extreme to the other.
I have had my jpouch since 1996. I know I am one extreme in as much as I had no real issues after the first 3-4 month of getting to know my jpouch and have been able to live a completely normal life up until about 12 month ago. I play golf and am able to go for 5 hours or more with out the need to go, provided I have kind of scheduled my diet a bit before hand. The only negative I have had over time has been loss of sleep through going 2-3 time overnight. I have avoided hot/spicy food on the whole but have never had any dehydration issues - I guess I sense when I need to drink more fluids ahead of time.
The other extreme perhaps is being described by Dog Day. Most people I would guess are somewhere between the two but the key is to learn how your Jpouch responds to things you eat and do and adjust as required to lead as normal a life as you can. If you are fortunate you will certainly have no regrets but hold on to possitive thoughts and give it time.
Dave

fq,
I agree that you should try to get out as much as possible to get your mind off poop. I find that when I'm at work or out and about, I don't tHink about the bathroom at all.

Oh and two years later I'm still noticing improvements.

quote:

i guess i can only sit and watch the clock and calendar.

This is exactly why you need to get out and do something to get your mind off your butt. Really, you need to get out and be with people, do volunteer work, do something, anything, to get your mind off your butt.

Sue

Sue is right. The more I am doing something with people the less I think about the j pouch

As you can see, everyone has a different outcome. This seems heavily weighted w poor outcomes, so I'm throwing my case into the ring.
I can't say how many months everything was because I have now had a pouch for more of my life than I had a colon (thank goodness). I have had the pouch for 24 years. 2 years into it, I had a bowel obstruction that required a surgery. 4 years into it I had a second similar surgery. I have had pouchitis that easily resolved w medication. Now, 24 years later I can tell you the following: I go to the bathroom about 4 times a day (it doesn't bother me so I never keep track). My pouch functions better while I'm on antibiotics, particularly augmentin. I wake at night to go to the bathroom which doesn't bother me. I can eat bags and bags of popcorn, I eat humungous salads and lots of raw vegetables and fruits without a problem. I eat nuts and seeds without a problem. I have done every sport that may make you worried about your pouch from rock-climbing to backpacking to whitewater kayaking to running half-marathons....I am now planning a climbing trip where I will be sleeping on a vertical wall and will have to "collect" my poop as I go -not fun to think about. Anyways, I have never and will never let the pouch get in my way. It works fabulously ! Give your body time to heal, keep your chin up and do Kegels.

sorry, I forgot to mention -the only food I don't do well with is melon --so I'm careful with cantelope, watermelon and honeydew,

thanks everyone!!

I will try and be out and about more while my pouch is still maturing and healing. that might help. mentally coping with this is a struggle and i guess it doesn't help me by sitting around and overthinking.

TrinaS - wow sleeping on a vertical wall?!? I had no idea such things existed! what happens if you roll over in ur sleep?

quote:

Your pouch isn't going to heal in months, the truth is it's going to take many many years before you feel a difference. And even after all those years be ready to make lots of compromises.

Dog Day - this is very upsetting. No one told me it will take many many years. I thought it would be only a few months (up to 1 year) and then i would be better. But i guess if people are saying that improvements still happen after many years than the pouch function is not optimized for a long time? since i am only at 2 months, i have such a long way to go. if it takes so many years, how do people manage and cope in the meantime? diet and drugs? doesn't sound good.

ostomy seems so much quicker. after the surgical recovery, it works on its own. no training or expanding or holding or waiting many many years. that is disheartening to hear about the jpouch. what kind of compromises did you have to make? can you elaborate?


j-pouch : 2 months

fq. Dog Day is complaining with very little to complain about. Ask him to specifically list the "horrible problems" he's had to deal with and he will tell you he had dehydration once in over 20 years.

DO NOT let him upset you. That's his intention. Everyone is different. I've had my pouch for 16 years and never had pouchitis, or virtually any real problems. There is a new normal, but it's okay and much better than living with cancer/ulcerative colitis or losing your life. Again, you are brand new to this. I am not saying you will never have a problem or even negating the possibility that your pouch may not work for you. However, you have a long way to go before making any of those decisions. There has to be a mental acceptance that your life is now different, but different doesn't mean negative. In fact, it can mean positive and a better quality of life than you had before. I believe that no matter what happens -- one has to make a choice to either a victim or a survivor. Dog Day is chosing to be a victim and it has virtually nothing to do with his j-pouch. Hang in there and continue to come here asking questions -- and weeding out the broken records.

Dog Day is Fredbird. He's been a troll on this site for over 11 years. He actually tried to talk me out of surgery; he failed because I could see between the lines; he doesn't really have much of substance to complain about.

Sue

quote:

fq. Dog Day is complaining with very little to complain about. Ask him to specifically list the "horrible problems" he's had to deal with and he will tell you he had dehydration once in over 20 years.

I will also tell you I've suffered from Pouchitis and blockage plus an ulcer too. I've also been unhappy with the frequency of bowel movements after all these years. And when it comes to dehydration, that's happened to me 3 times already. That's pretty bad considering it never happened to me once before my J Pouch. And going through dehydration is hell too. Thus Laurie49 has no idea what she's talking about.

On top of that SueBear is the real troll here to convict me without one shred of evidence. And it's a real shame her attacks keeps continuing here when this is suppose to be a support board, not an attack board. And I unlike her am not giving anybody a hard time here

Dogday-

you are not giving anyone a hard time but you are giving a doomsday pix to a new member. What's the difference?

I appreciate the saying a "new normal" let's try to be onjective.

I mentioned this in another post but again, please, new members pay no attention to Dog Day. I don't know what his problem is but he isn't here to help anyone. I have been threatened by him in my personal email for no reason at all. If anyone has their email address in their profile, I would recommend that you remove it.

Please new members don't pay any attention to posters like mgmt10. She's clearly here for the wrong reasons. I don't know what her problem is but she isn't here to help anyone. In fact as you can see she accuses me of this yet if that's the case why did I make these posts? http://j-pouch.org/eve/forums/...957032326#5957032326http://j-pouch.org/eve/forums/...1071921/m/9127052326

ok thanks. i admit i was kind of confused but i will try to not let the negative things get to me. i would think this would be a community where we all wanted to help each other and offer hope to those who are suffering.

thanks everyone, i truly appreciate you!

Here are some posts by Dog Day/FredBird/Ronald McColon/masterofthypouch from a website that he was also banned from. In this post he is stating that everyone who takes a drink of alcohol should be killed: "I don't drink & support 1 more prohibition in the USA. This time around all caught drinking must die! They've already killed enough innocent people in this world, now it's their turn to pay the piper."

Here's another of his posts in which he states that death is preferable than j-pouch surgery: "Kim, if you're going by Christianity, then letting your kid die is abuse. Whereas if you leave religion out of it and consider the kid will be suffering the rest of his or her life because of this surgery. While death makes for just as good of an alternative if not better
than surgery, then the whole idea choosing death over surgery makes sense."

As you can clearly see - he's a complete whackjob. Here are many pages of insane rants by Dog Day in one of his (many) previous personas.

Please do not take anything he says to heart. He's now focused on a vulnerable poster and he will do everything he can to scare the bejeezus out of her.

Congratulations Kathy, posters such as you mgmt10 and Laurie49 have ruined what started out as perfectly good thread before your mindless attacks started here.

I am new to the site and don't know any history but I feel Dog Day is just being honest...if he was or is crazy, bottom line is he doesn't like it and is not happy but he's just being honest. No biggie so let's all move on from this soap opera shall we peeps? Bringing posts from the past to prove a point is like my boyfriend bringing up stuff from the past...it just gets annoying.

Yeah this really is getting ugly. We need to regroup and get back to helping each other with our butt stuff.

quote:

Dog Day - this is very upsetting. No one told me it will take many many years. I thought it would be only a few months (up to 1 year) and then i would be better. But i guess if people are saying that improvements still happen after many years than the pouch function is not optimized for a long time? since i am only at 2 months, i have such a long way to go. if it takes so many years, how do people manage and cope in the meantime? diet and drugs? doesn't sound good.

FQ, I'm sorry I couldn't answer your post quicker here before this thread became derailed. I really do believe from everything I've seen and been through myself that years of time is needed to heal your pouch. Dieting is one of your best bets to cope with it now. I haven't had much luck with drugs. I do use Imodium sparingly. At least I can get it really cheap at Costco. I was having good luck with a probiotic I bought at Walmart, except my problems with gas was enough to make me give up on it. It's worth giving probiotics a shot though.

Actually - dealing with Dog Day is what is unfortunate. Under his current persona he has been trying to get by so that he can again screw with people. Members who've been here for a long time know exactly what he's up to. If someone doesn't point out what he's doing then he just goes after vulnerable people even more - including very young children. It may sound like he's 'just unsatisfied with his pouch' but that is not his real reason for posting on this and other sites.

It is totally appropriate to point out what he has done in the past because that is what is doing in the present. The people who have mentioned him have dealt with him. The people who have mentioned him have all - without exception - been on this board merely to offer support to people who are having problems. Both Suebear and Marianne give support here and they are also both moderators on another IBD board. They both also offer support on several facebook j-pouch groups. And they both have well-functioning j-pouches. They don't need to be here. Laurie also has a well-functioning j-pouch and she's here merely to offer support. That is exactly what those who know Dog Day are trying to do - help others with their pouch problems.

When a statement is made that Dog Day is not giving anyone a hard time that is not quite what is going on. This is his typical MO - he sees that fq is having a hard time right now and he specifically makes a statement to her indicating that what she is going through right now she will have to go through 'for years.' How is that helpful? Especially when he never experienced that? You will see that people ask him over and over and over again why he's so negative about his j-pouch - what is wrong with his j-pouch. And you will see that he never answers that question other than to say that he's 'not allowed to post his problems.' That is a blatant lie. No one has ever told him that. He just refuses to post his 'problems' because in reality he has none. He runs over 50 miles a week in Chicago heat and humidity. How many coloned people could do that? He complains that he can only eat certain foods. A typical dinner for Dog Day is an iceberg lettuce salad, some peanuts and diet coke. And then some more diet coke. How many coloned people could eat like that without problems.

He is a dangerous person. He has convinced very, very sick people NOT to have surgery. He has told people repeatedly that having j-pouch surgery is worse than death and that they should commit suicide rather than having the surgery. He is a cyber-bully and because the laws regarding cyber-bullying are so ambiguous he hasn't yet been arrested. But I have no doubt that one day that will happen.

Read what he wrote above - he apologizes for not answering fq's post quicker and then tries to walk back what he was saying. But he doesn't ever apologize to fq for making the previous statement that was a blatant lie. This is also his MO. He is trying to make people think he's normal. He is not.

Oh I see it's really wrong for me to express my own opinion here Kathy just because it's different than yours. If you feel so strong about that please move to Iran or some other place that doesn't permit freedom of speech. You'd just love their justice system there too since you're not entitled to a fair trial. You must love that Kathy since ever since I started posting here you've accussed me of being somebody else. You don't even have one shred of evidence too when it comes to that. And yet you believe you're Ms Innocent by coming here attacking me day after day and even calling me
"a whackjob" today. And yet you're saying "I'm very sick." Well Kathy I believe you're the one who's suffering from a illness to come here day after day and carry on with this paranoia of yours. Do us all a favor Kathy and please see a doctor and get the help you really need. I honestly wish you'd just calm down already and understand there's nothing to worry about. I'm afraid at the stage you're at now, that's not going to happen until you find the help you really need. I honestly care for you Kathy and hope you take my advice.

I'm gonna go ahead and talk to fq here (this is his thread after all).

fq - I know just how you feel. I had my takedown just about 7 months ago and at the outset, I had no idea what to expect. I'll admit, it scared the crap out of me (no pun intended) but the only thing to do is let time pass and see what unfolds. I urge you to fill that time with something enjoyable, it really does take your mind off things.

Everyone is different. Take both the good and bad stories on this site with a grain of salt because your own story is going to be different. In my case, 7 months out I can eat whatever I want (and I do), drink carbonated drinks, eat (somewhat) spicy food and usually use the bathroom 3 or 4 times a day. I've been able to go up to 12 hours without a trip to the bathroom.

Is this the norm? No, probably not. Again, everyone is different. You'll see soon enough what your new normal is. Bottom line (ha, more puns) it does get better. Hope this helps.