veteran j-pouchers please keep reminding us...

Hi Tom,

It's going to be okay. I'll remind you as often as you want. Hang in there buddy!

thanks marianne so much!!!

My first 6 months sucked. Months 7-18 got progressively better.

Almost 20 years later I'm still going strong and don't regret it. Hang in there.

very encouraging lion. thanks...

Tom,

I've read your threads recently and see where you are going through a rough post takedown. I was the same. After getting home from the hospital, I experienced around 3 weeks of severe butt burn. The burn was so bad I was convinced the surgeon cut the inside of my rectum by accident because the acidic stool passing through was so bad I would literally cry. I would cry when I had a bm, I would cry when I knew a bw was coming, and I would cry at my situation because I was just so tired of going through the recovery process. I also experienced a high # of bm's, 15-25, for several weeks. It was miserable...

Almost 4 months post takedown I had a colonoscopy and was diagnosed with pouchitis, which I assumed I probably had for a long while and did not know it.

Upon taking antibiotics (cipro & flagyl), I immediately started to recover properly, started being able to eat more foods, and started putting on the necessary weight.

I know it's tough, but do whatever you can to stay positive and understand not everyone goes through an easy recovery. Even when I started getting better physically, I was still struggling mentally. This is a major surgery that takes a toll on your body and you just don't recover overnight. It was around the 1 year mark of my first surgery where I started feeling "normal" again.

Now, 2 years removed from takedown, I have 4-6 bm's a day, I eat what I want, I take zero meds, and I'm extremely happy with my decision.

Keep your head up Tom. Whether you know it or not, you're on the road to recovery my friend....

(check my posts from January-May 2011 for references)

Tom, sorry to hear your having a rough go at it. Hang in
there and give your body a chance to both recover (you had
3 major procedures in very short order) as well as adapt.
Your poor GI tract is probably still trying to get the
number of the proverbial bus that hit you. ;-) Prayers
& Best Wishes, Steve

Yes,believe it or not,you will get better.I have had pouch for two years,and yes life is great-I almost dont remember my UC days,and I dont often visit this site and I suppose most of the happy pouchers dont-so the success rate is much,much higher than the site indicates.Thanks God j pouch surgery exists,and my life is back!!!!

I don't know if I'd be considered a "veteran" at 7 months out, but I will say that things do get better. My only advice is to keep giving your body reasons to adapt (just don't go overboard). Every day I forget a little more how it is to feel like crap all the time.

i refuse to look at it that way. there are way more happy pouchers than not and no one is going to make me feel bad or scared this early on. i so want to keep coming here to benefit from this site but posts like this make it hard. i dont mind people being honest with their situation but saying that i need to prepare to be unhappy with my new j-pouch 3 weeks out just isnt right...

Good for you Tom! Remember there is an ignore button that you can select so that you never have to see another ridiculous, repetitive, rant. Please select that button in your preferences as soon as you finish reading this.

As I said in another post to you, you seem like the type that wouldn't ever be a victim. If the jpouch doesn't work out for you, you would find an alternative...although you are way too knew to all of this to even consider an alternative. I am a veteran at 16 years. I remember feeling exactly like you, honey. It all just gets so freakin' overwhelming and feels like it will be never ending. An hour feels like a day, a day feels like two, etc. You will survive this, and always know you are never alone.

thank you so much!!!

quote:

i refuse to look at it that way. there are way more happy pouchers than not and no one is going to make me feel bad or scared this early on.

It's a free country Tom, I'm just telling you how I feel after 24 years of living with a J Pouch. Whoever said "hindsight is 20/20" knew what they were talking about. Thus if I had to do it all over again, I'd keep the diseased colon.

It will be just fine. Like I said before, I thought I would obsess about it forever, and I really didn't have any complications that required me to drive the 5.5 hours from home. I do remember the spasms were quite intense and awful. Those get better. I also remember going and then getting up and having to go again and again at night.

I think you had asked me if I go out at night. I most certainly do. For the most part, I eat what I want and do what I want. For some reason, when I go out at night, my pouch usually behaves. I take 2 immodium before I leave and if I plan on having a drink or two, I have another dose of my fiber. I just got back from a wonderful girls' weekend in St. Augustine. We went out every night and had wonderful food and drinks. My friends know I go to the bathroom more often and they were just fine with it. It didn't stop me from having a great time. Please know that it gets better and you will look back and think how happy you are that you got this done. It really is a short time when looking at how long we all suffered before.

quote:

Thus if I had to do it all over again, I'd keep the diseased colon

And if you had, you could very well be dead of colon cancer by now. Eventually that is what happens with UC that has a surgical prognosis or shows signs of dysplasia. Dysplasia is basically a sign that cancer is around the corner. If I had not had surgery I would be dead of cancer or a perforated colon. My colon was close to perforation when removed and it did perforate ("dissolved" was the word my surgeon used) when it came out.

i wish this site had a like button cause i like you guys!!!

My pleasure!

quote:

And if you had, you could very well be dead of colon cancer by now. Eventually that is what happens with UC that has a surgical prognosis or shows signs of dysplasia. Dysplasia is basically a sign that cancer is around the corner.

Since the only 2 guarantees in life are death and taxes, I'd be more than happy to take my chances with other alternatives, especially probiotics that I never had a chance to use back then. My gastroenterologist just kept me on all the typical meds at the time that have seemed to fail most people here. Not one alternative that I can remember was used then. I only wish the internet was around then, it would have been much easier to discover other alternatives at the time.

Of course, we are all different regarding our reasons for going forward with the decision to have a colectomy, but I would think that in a vast majority of cases, it was more or less a choice of last resort.

For me, I put it off as long as I could. No response to 6 months of medical management with deteriorating health. At the time of surgery, my appendix was ready to burst, so I too was close to perforation.

Maybe if you opt for surgery too soon, you are more likely to second guess the decision and obscess about the what-ifs... Certainly was not the case for me. I was 100% sure it was the one and only option for me (other than ileostomy). A no-brainer in my mind!

Jan

That was also my situation, Jan and it was 16 years ago, before I had access to the internet (to my knowledge at that time) and didn't know what other alternatives I had -- other than a permanent ostomy. By the time I was transfered to a colorectal surgeon in Boston, the decision was made. Three surgeries and 4 months later, take down was complete. It wasn't an easy transition as I had a 5 year old and an 8 year old and didn't want their lives to be altered any more than it already had been by my UC. I quickly made the decision that although it was never going to be perfect, there was no reason to focus on the negatives and not the positives, one of which is being disease free! I think that's a big one!

I've had my ups and downs over the last 19 years, and when I'm in a down phase - I remember how incredibly sick and miserable I was with the colon, having embarrassing accidents on top of feeling like death warmed over and just wishing it would all end but too afraid to take action. I can't help but improve my mindset regarding life with a jpouch at that point.

Recovery from the surgery and learning to live with a jpouch was full of advances and retreats, but you will find ways to handle them and you will continue to gain strength.

You have a great resource here (as mentioned above, some of us veterans had very little or nothing back in the day!), so please come here often and vent, pick up pieces of helpful information, request help/advice, share what you learn with your doctors, document your progress for us, etc. We're all in your corner!

Tom,

I was one of those who fought very hard not to have surgery. I was so opposed to it that I actually did think of just letting the disease take it's course and if it took me with it, so be it. To please my GI I went for a surgical consultation and my surgeon changed my mind. That was 11 years ago. The first year was rough, but I would mentally note small steps in improvement and that kept me moving forward. There were many days were I felt I was regressing, but the next day would be better.

The entire process has been worth it for me. I have such freedom that I didn't have with UC, and I'm not sick. Life is entirely predictable now.

Sue

Tom - I'm three years out from my surgery. Every case is unique, every case is different, but it does get better, it does get easier. You're a month out from takedown - give yourself a chance to adjust to your after-market GI tract. :-)

I am not a long-term j-poucher but I am happy with it. My first two months were tough but now, four months later, I am doing five to eight miles of race walking on most days with 8 to 12 miles on Saturdays. My pace is 15:34. A respectable but not very competitive pace.

I still have occasional spasming and I have to gently reintroduce new foods but overall it is 100 percent better than fighting uc everyday. There are still a few difficult days every month but they quickly pass. I am 53 and spent 2 years in bed before my take down.

Be very patient with yourself for the first three months, then listen carefully to your body. I think we can do anything we want as long as we are determined to do it and don't focus on every ache and pain. It is very important to look at improvements on a monthly basis! You will be amazed at the difference between your third and fourth month.

One of my race walking coaches has a j-pouch. She has helped me figure out hydration/nutrition issues during races as well as inspire me. Her take down was in July but she just did the Portland Marathon in October! Her colon was removed because of cancer. She has been racing for 30 years and is absolutely amazing.

Now is the time to start dreaming and planning about what you want to do to celebrate your new body. We are incredibly lucky to have this second chance.

My "Take Back My Life" event is to complete the Rock N Roll Half Marathon in Las Vegas Dec. 2 and buy my very own bright red sequined show girl costume! I know it is silly but life is too short not to have fun.

Another thing I forgot to mention is that surgical technique and protocol have only improved in the last 20 years (as it is with all surgical procedures). They are making adjustments as more long term data comes in. We need to keep in mind that a generation ago, this surgery was experimental. I only wish that I could have had the current techniques around when I needed my surgery in 1995!

In addition, medical options were more limited then too. The internet was there for me in 1995 and I did plenty of research, but there just was not a lot in the way of options. The same alternative medicine things were there, but they were not effective for any severe or refractory cases.

Jan

thank you jan sub, im 52 and spent years in bed also. today was a good day and if the clusters come tonight ill hold them as long as i can and except the discomfort when needed and look forward to tomorrow being another good day. still only 26 days out so i have to be reasonable...

You are doing really well, Tom. Another really positive thing you have is this forum. I remember finding it around 2000ish and I cried for a week. I was SO grateful to have others to talk to and to ask all the questions that I had for other j-pouchers. I found such welcoming compassion and an understanding that was more than I could have expected, that only those who truly got 'it' could have. This place was truly a life changer for me and you've got it right out of the gate!

Honestyisbestpolicy,

Your comments are disgraceful and you should be ashamed. You are having a negative impact on peoples lives and that is kind of a big deal. If you are so anti-surgery why don't you go to a website where people are still in the decision making process and warn them about the horrible experience you have had rather than trying to make other people feel as awful about their situation as you do!

OK, let's keep this civil. I don't want to have to close this thread.

Best to ignore posts that annoy you, even if they seem redundant and unhelpful.

Jan

Also, chasingtime clearly stated that he/she was wanting to hear success stories and you STILL posted something extremely negative for the sole purpose of making chasingtimes day worst .

Jan Dollar, you are correct but at the same time this is supposed to be a support forum and honestyisbest policy is only leaving destructive comments that leave people in a worst state of mind than they were initially in before they came to this site for support. There is political correctness and there is also common sense. In order for a site like this to be effective (in a good way) trolls should be deleted.

The problem is people on this site have ALREADY made the decision. Get a clue man!

Ok I understand that but why not share your story with people that have yet to make the decision? Then you might actually be helping somebody. Chasingtime was looking for support and your story was not beneficial to him. That is me being honest with you.

quote:

WHEN IT COMES TO MY J POUCH I CANNOT TELL A LIE

honesty, you say this but in reality you lie by not telling your true story. thats so strange...

Chasingtime,

Because you were asking to hear positive aspects about the surgery I will share with you how this surgery has benefited my life. I am six months post op and able to lift over 230 on bench press now. I weigh around 170 and just started working out a little over a month ago. Whenever I had UC I was never able to keep a solid weight on consistantly and was unable to continue to workout over a month without getting hit by a UC flare up. This has been one of the many BENEFITS of having surgery.

quote:

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Also, being 25 yeas old and early into my career I will now be able to work a full time job without worrying about massive UC flares .

i love it new. i cant wait to get a few more months out. got down to 97 lbs before first surgery in may...

Something else to look forward to. Eventually you will forget what it is like to be sick which is a great feeling! A feeling I never had when I had UC. Even when I was on prednisone and the flare up was controlled I knew in the back of my head the UC would eventually disrupt my life again in a major way. Now I can actually plan ahead and not feel like I am always flaking out of my prior commitments. It is a GREAT feeling to not be controlled by a disease anymore

You will get your weight back gradually and then you won't have to worry about the crazy weight fluctuations that go along with colitis.

thanks new. see this is what this site is all about. if i could just empty easy all the time instead of most of the time this recovery would be so much easier. thats my biggest beef right now. good all day then bam a cannon ball in my butt then good next morning...