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Posted 12/12/2013 12:30 PM (GMT 0)
I am trying to make surgery decisions. I am have persistent circumferential ulceration with narrowing at 10 and 15 cm, but the rest of my colon is normal, save some scar tissue in my cecum. I am 'this good' because of the combination of azathioprine and Remicade, but it it not enough to get me into remission. I've just tapered hydrocortisone enemas, so I am steroid free for the first time in 18 months.

What I'm trying to wrap my head around is the real 'improvement' after surgery. Obviously there is recovery, and then there is the pouch adjustment period. I understand this could take a year or so, if there are no complications.

What do you really eat with your j-pouch? With UC, I can eat anything I want. Yes, I may have a difficult night if I get into onions or cabbage, but I can avoid those or eat them on weekends. The thought of a restrictive diet for life is much more depressing to me than a chronic illness. I love food. I plan vacations around my epicurean interests.

How many times do you really go to the bathroom with your j-pouch? I usually do not have to get up at night for a BM. I actually go an average of twice a day, but I am in the bathroom more often because I can't pass gas off of the toilet.

It seems like the quality of life decision is a lot harder when you're 'not that sick' before surgery. :-/
Posted 12/12/2013 2:06 PM (GMT 0)
I had UC limited to the size of a quarter, in my rectum. My colon was fine; but that small patch made my life miserable and the flare was considered severe.

I had jpouch surgery 13 years ago. Best decision of my life, health wise. I eat everything, really. My typical daily diet is high in fresh fruit; blueberries, banana, apple, tangerine, pears, etc. Dinner is usually a very large salad with fresh carrots, cucumber, tomato, lentils, lettuces, and some sort of protein. I usually have homemade applesauce for dessert. The only time my diet was restricted was the first 6 months post takedown. It takes time for the new plumbing to adapt and learn how to behave like a colon/rectum.

I'm a long distance hiker (100-200 miles). Surgery allowed me to pursue this to the fullest, I've done many international long distance hikes not to mention I've done a huge amount of international travel post surgery. I've backpacked, camped, and basically lived like a normal person.

I have no idea what my frequency is; it's probably higher than the average jpoucher but that's due to my diet being high in fiber. Obviously frequency is not much of a concern for me. Emptying the jpouch is as quick and easy as urinating. How many times do you urinate in a day? I do get up at night but again, it's not an issue for me.

The best advice I can give you is to be patient with your recovery. It will be two steps forward one step backwards for about the first year.

Sue
Posted 12/12/2013 2:34 PM (GMT 0)
I don't have a j pouch, so don't have the answers to many of your questions, but I just wanted to agree with you that the decisions are often much harder when you're not as sick. In my case, I was opposed to surgery until everything got so bad that the other choices besides surgery were clearly worse.... so the decision was actually very easy, so easy that it scared me, but I've never regretted it. On the other hand, the recovery was very difficult because I had been so sick for so long.

So, I think there's a tricky balance between emotional and physical difficulty of the decisions.

I had to make a decision about a much more minor surgery and it was much harder.... because I'm in my life now, and it felt like there was more to lose.

Best of luck with trying to figure out what to do.
Posted 12/12/2013 6:29 PM (GMT 0)
I eat everything and anything with my j pouch. Some things may make me "go more" or give me some butt burn but nothing so bad that it would stop me from eating it. After all the years of suffering with UC when I really couldn't eat anything, I'm enjoying food again now.

I use the bathroom average 4-6x a day. Some days less and some days more. I don't really keep a tally anymore. I'm in and out of the bathroom as quick as urinating. I have no urgency at all. All the best to you. :)
Posted 12/12/2013 9:27 PM (GMT 0)
I have an ileo so I can't comment on the jpouch. I can tell you that you might not even realize how sick you actually are until after you are better. Someone posted that before they had surgery they didnt think their Uc or quality of life was that bad. Then when they weren't sick anymore they realized just how bad it had been.
Don't get discouraged during recovery it takes a long time to recover and get your body adjusted.
Posted 12/12/2013 9:46 PM (GMT 0)
Take this with a grain of salt because I am only about four months post-takedown... Like Sue said I expect my situation will improve especially over the rest of the year but for now here is my situation:

- BM about six times per day. It still takes me longer than urinating but not excessively long.

- Wake up once, sometimes twice per night. Twice is when I've eaten late or eaten something that I knew would cause trouble (but did it anyway because it's worth it!). When I wake up it's not urgent, I just wake up knowing that I should get up and go to the bathroom.

- Butt burn is very rare for me now regardless of what I eat. I think I am lucky in this regard. I also have a bidet at home and use it religiously when I'm home, I'm sure that helps. Out in public I'm fine with regular toilet paper. I don't use Calmoseptine or any special creams anymore.

- I eat virtually everything. For example, I went to a 20+ course dinner (tasting menu) at a Michelin starred restaurant this week (a treat! not bragging! very rare for me wink) and I was able to eat everything that was put in front of me, no substitutions. And no toilet consequences, either. In general from a day to day diet perspective, I would say that I am still limiting fiber -- like Sue said, it increases frequency, and since I am so new to my pouch it can be tough. I used to eat a lot of salads -- like a huge bowl of raw spinach with veggies and meat on top -- but raw greens increase my frequency so I'm less inclined to do that now. That was all pre-UC, I could never eat raw veggies after I was diagnosed, so it isn't a hardship for me. Alcohol, coffee, sweets, and spicy food are all OK with my pouch (although REALLY spicy food burns a little on the way out... that happens to everyone, even with colons, and it's worth it to me!)

- I cannot pass gas away from the toilet, but I have a lot less gas than I did when I had my colon. Like I said, on average I use the toilet 6 times per day (including passing gas... my BMs are usually a mix of gas and stool), so I'm not sure if not being able to pass gas actually affects my daily life at all.

I agree it is a tough decision for you. Surgery is hard, it was a no brainer decision for me and still mentally difficult. I wonder if you have other issues related to your UC or the medications you take? Extraintestinal symptoms, fatigue/weakened immune system, anything like that? How confident is your GI in your UC diagnosis (vs. Crohn's)? Do you think you could hold out until February to try vedolizumab? Would you even want to do that? Do you have a surgeon you're super confident in who is willing to perform surgery and has done >200 j-pouches?
Posted 12/13/2013 12:19 AM (GMT 0)
I just had a colonoscopy with a lot of biopsies on 12/2. Nothing indicated Crohn's. My first scope in 2011 showed inflammation in my cecum, and scar tissue was visible there on this scope. Both times they've looked at the terminal ileum, it was normal. So the surgeon will have a recent, complete pathology report, and my doctor has me off of steroids for him too.

She told me that she doesn't think I'll make it to vedolizumab, because it could be 2015 before my I insurance will cover it. They're still not covering Uceris. I have a methotrexate prescription that I've never used, and I could insist on trying Humira. I think these would pass time, but I don't have a lot of confidence that they'll really spare me from surgery in the long run. I have never achieved symptomatic remission since diagnosis, not even on hospital dosages of IV steroids.
Posted 12/13/2013 4:50 PM (GMT 0)
Can you get into a trial for vedolizumab/? I've seen some people using simponi and xeljanz too. There are some options in the trial phase but I am not sure what types of results they are having.
Posted 12/13/2013 10:53 PM (GMT 0)
Washington University School of Medicine Division of Gastroenterology is where my doctor is located. They have an open trial for Xeljanz now, but my doctor doesn't want to put me onto a double blind study because she'll have to take me off of what I'm on now for a potential placebo.

She is working on a long term vedolizumab study, and she's been talking about it since March, but I guess she thinks I can't make it until that one is off the ground.

I really don't know what to do. :-/
Posted 12/13/2013 11:09 PM (GMT 0)
Sorry you are having a tough time deciding. I think you just know when you are ready for surgery. You may not be there yet. For me I just knew it was time. I could have tried Humira after the Remi failed but I just didn't want to keep going on the roller coaster ride. Not only was I suffering but my family was too. I just don't hold a lot of faith in the biologics for UC. They seem to be more effective in Crohn's patients.
Posted 12/13/2013 11:26 PM (GMT 0)
that's a tough situation Tornado. Just try to keep in mind, MANY, many people have successful J-pouch surgery and go on to live very normal lives. I know it's not ideal to have to go through the process of getting there but once you're there, you can get off all the meds and the UC worries will be gone forever. I think whether you can make it until the study is up to you. She's not the one living with the discomfort. Don't let her make these decisions for you. If you want to wait, stand your ground. if you're so sick, you're risking emergency surgery while waiting, that's another story, and in that case you should definitely be consulting with surgeons.
Posted 12/14/2013 3:52 AM (GMT 0)
I guess my only concern about "sticking it out" is the circumferential ulceration and the narrowing. Those are issues that can take a person from decent quality of life and "not that sick" to an emergency colectomy for a bowel obstruction or perforation pretty quickly.
Posted 12/14/2013 10:12 PM (GMT 0)
Surgery is not easy. It is multiple operations, dealing with the ostomy, then adjusting to the pouch. For me, the decision was easy. I was in and out of the hospital and was tired of crapping my pants every day. And even though I am still adjusting and a salad still gives me fits, life is do much better. Most nights I get up once or twice, although I had my first night without a wake up call this week! I usually go 6-8 times throughout the day. But I eat whatever I want (still determined to eat salad) and generally just enjoy life. I think most people know when they are ready for surgery - I didn't think twice once I decided to do it. You have to be ready for the long haul - and for the possibility that they could discover you cannot have a pouch and have to keep the ostomy. If you aren't prepared for and willing to accept that, you probably aren't ready. Good luck.
Posted 12/15/2013 2:03 AM (GMT 0)
I have an end ileo, by choice, even though I could get two more surgeries and have a jpouch, so I can't comment on QOL for a jpouch but I can make a general comment echoing what summerstorm said about not knowing about how low one's QOL is with UC until the UC is gone. I conisder my QOL to now be the same as it was pre-UC-- that is to say, I find the impact of life without a colon (vs life pre-UC) to be negligable on my QOL. I am 7 months since the surgery. My pouch is always invisible to strangers and even those I know (unless I strip naked), And there is basically nothing that I did pre-UC or UC that I cant and dont do again now with abandon, except of course that I can do tons more stuff than I did when I had UC. I have no problems with nuts or salads anymore either.

As far as knowing when you are ready for surgery, well, I cancelled my surgery once (then rescheduled it on again justba week after cancelling) and almost a second time, and then almost cancelled it the day before surgery... I didnt feel ready and kind if went in extremely conflicted. Once I got over my first couple months of dealing with some infected incision issues that were fixed, I am firmly in the camp of "wish I had done it years and years ago"-- I do not feel life without a colon is a compromise- it is so minor in lifestyle adjustment as to be on par with wearing a watch vs not wearing a watch, for me anyway. I no longer even think about it 99% of the time, and have to remind myself on occasion that normies are "shocked" if I tell them, lol. I am sure the same is teue for jpouchers- as suebear and pluot do a good job of explaining.

Post Edited (Probiotic) : 12/14/2013 7:06:10 PM (GMT-7)

Posted 12/15/2013 5:42 PM (GMT 0)
I tried to help push a guy out of the front yard yesterday, and I felt winded for twenty minutes afterwards. Sometimes I get little reminders that I am pretty sick, or at least horribly out of shape.

Pro, I remember your back and forth. I'm glad you're doing ok now.

I would try for the pouch, unless they did find something in my small intestine. It sounds like two-steps are the norm around here.

I have cancelled my June vacation and booked a trip to New Orleans in January. I just can't give ALL of my PTO to this stupid disease.
Posted 12/15/2013 7:15 PM (GMT 0)
It depends on your surgeon and your situation. Since you aren't on prednisone at all and your colon is mostly quiet right now two step is probably a fine choice for you.

Do you have a surgeon yet?
Posted 12/15/2013 9:00 PM (GMT 0)
I have the referral to one, but I have not met him yet. I hope I can schedule the consult after the first of the year, because I don't have any PTO left this year.
Posted 12/15/2013 10:29 PM (GMT 0)
Well, today I helped shovel some really wet, heavy snow, and all I was thinking about were all the years when I was not physically able to help, where if I tried it would wipe me out for the whole day.... and now I just have a few of the regular aches and pains that a middle aged person has after the first time shoveling in a season....

I agree with the others.... I just didn't realize how sick I had been for so long until I got better...
Posted 12/17/2013 8:07 PM (GMT 0)
Surgery consult is scheduled for 1/17.

It is in the next building over from where I'm currently sitting, receiving what I hope is my last Remicade infusion. I think it is funny that he sees patients out here at this same satellite.

I think he does all of the surgeries downtown. I wish I could get it done at the satellite that is right by my house instead. That'd be easier on everyone else.
Posted 12/17/2013 11:30 PM (GMT 0)
Well, many people have to fly to get to a qualified surgeon and hospital. Downtown isn't too bad :-)
Posted 12/22/2013 12:42 AM (GMT 0)
     I had ulcerative proctitis.  For twelve years I suffered with that darn disease, but it never traveled further into my colon.  However, that 20 cm or so of diseased rectum was HORRIBLE!  I ran the gamut of meds, 6MP, Remicade and then Humira.  I was prednisone dependent for two years prior to my operation.  Unfortunately, due to my deteriorating health, I was not a candidate for j-pouch, but I was so sick of being sick, I had already wrapped my head around the idea of having a permanent bag.  I have no regrets.  My operation took place on June 28,2010.  I was 63 yrs old at the time of my operation.  I am now 67 and enjoying life to the fullest.  Prednisone took a BIG toll on my overall health, but had I waited any longer, I doubt I would be here today.  Best of luck to you!
Posted 1/17/2014 3:31 AM (GMT 0)
Well, tomorrow is the big day.

I decided on my vacation that I do not want to have surgery now. I am trying to keep an open mind, but I feel like I am only going to appease my IBD specialist in hopes she'll keep me on as a patient.

The whole concept of surgery does not fill me with hope, but makes me very sad and defeated feeling.
Posted 1/17/2014 7:32 PM (GMT 0)
My life was miserable with UC and I thought the ileo was a god send and it was..to the point that I closely contemplated making it permanent even though I had the option for a j pouch. In the end, I opted for the j pouch and am even happier. I feel blessed every day. I eat and drink almost anything I want (I chew carefully and thoruoghly) and am extremely active. I started to run this past summer and am hooked on it...never felt better. Sure I go to the bathroom more, 6-8 times a day...who knows I don't count and the only time I even think about it is when I'm eating somewhere and then going somewhere right afterwards. I do usually need to go to the bathroom within a half hr after eating but can hold it, it's just not that comfortable.

I wish you luck in whatever decision you make !

Bruce
Posted 1/18/2014 5:28 AM (GMT 0)
Before: limited low roughage/low residue diet, 20 trips running to the loo a day (hoping I made it on time) spending between 15 mins to 1/2 hour (at least) every time, painful cramps, 22 pills a day, numerous blood transfusions.

After: unlimited diet, empty my bag 6 - 8 times a day (whenever I pee really) taking only 2 minutes to empty and then I'm out of there, no urgency, no cramping, no pills, no blood transfusions.

No comparison really - life is heaps better after surgery!
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