J-Pouchers please respond

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kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 12/24/2008 11:05 AM (GMT -6)   
I've got a few question about the J-Pouch if any of you have a minute to respond..

1) How many times are you going a day? How do you know when you have to go, I would imagine it's a different feeling as opposed to when you had a colon.
2) Can you really eat anything you want?
3) Is it harder to put on/keep on weight?
4) what are your energy levels like post colon?
5) Can you tolerate alcohol, if so, how much?
6) Are you on any meds?

Thanks for your time, as you can probably tell I'm getting very frustrated with this darn disease and although my case is not too severe I would much rather not have to deal with these symptoms ever again, I'm only 22 and the thought of living like this for the rest of my life is not acceptabe
VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 12/24/2008 12:02 PM (GMT -6)   

Kickboxer, you may want to try this website, which is especially for people who have the pouch. It has information about the surgery as well as a support forum.

 

http://www.jpouch.org/


Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/24/2008 12:33 PM (GMT -6)   
I'll try to answer you questions; even though I've not had the procedure, I have asked these questions here before. I too refuse to live the rest of my life this way and I'm twice your age...still 22 at heart : )

1) 6-7 per day is about the norm...no more urgency and your BM's are short and sweet.

2) No restrictions is the norm

3) After time which varies between patients energy levels should be back to normal in as little as weeks but more likely a few months after each procedure.

4) Most are much better than when flarring

5) Should no longer be an issue for most

6) No longer taking IBD meds is the norm

Hope this helps and feel better : )


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!

Post Edited (bbc) : 12/24/2008 11:36:20 AM (GMT-7)


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/24/2008 12:49 PM (GMT -6)   

I had the surgery 7 years ago.  My experiences are as follows:

1) How many times are you going a day? How do you know when you have to go, I would imagine it's a different feeling as opposed to when you had a colon.

I have no idea how often I go but if I had to guess it would be around 8 times in a 24 hour period.  With a pouch you feel pressure to empty it but not urgency like with UC.  I can hold it for an hour or more comfortably if needed.


2) Can you really eat anything you want?

Yes.  I am primarily a vegetarian and live on 3 meals a day of fresh fruits and vegetables.  I haven't found a food yet that doesn't agree with me.  It took about 6 mos. post surgery for me to eat a full range of foods.


3) Is it harder to put on/keep on weight?

It's not hard to keep weight on.  Most of us put weight on after surgery because we are finally healthy.


4) what are your energy levels like post colon?

I had about a year of fatigue post surgery but I attribute that to 2 years of being severely ill.  I maintained work and exercise during that year but napped every afternoon.  Now I engage in 100-200 mile hikes and have as much energy as a healthy coloned person.


5) Can you tolerate alcohol, if so, how much?

I don't drink but most pouchers tolerate alcohol fine.


6) Are you on any meds?

The only time I take lomotil or imodium is when I am on a 100-200 mile hike.  Mulitple all day hikes increase my motility to I take the lomotil to slow things down.  I take no other medication but do take a daily vitamin and probiotic.
 
Surgery has been a blessing.  It beats the ups and downs of UC and the drug routine, for me that is.
 
Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


tbraz
Regular Member


Date Joined Jul 2007
Total Posts : 280
   Posted 12/24/2008 4:04 PM (GMT -6)   
How many times are you going a day? How do you know when you have to go, I would imagine it's a different feeling as opposed to when you had a colon.

I had my takedown surgery 8 months ago, so I am still adapting but I go about 6-8 times a day, no urgency, can usually hold it for awhile. I feel gas bubbles that are a little annoying (could be my diet) and I go.

Can you really eat anything you want?

In the beginning, I kept on a soft bland diet and slowly introduced foods so I would know what bothered me. At first pizza, bbq, spaghetti sauce caused butt burn, but I tried again later and now can eat them. I love salads and fresh veggies and eat them but in moderation.

Is it harder to put on/keep on weight?
I lost 30lbs in my last flare down to 90lbs and now am back to my normal weight of 118lbs

what are your energy levels like post colon?
I had low energy between step 2 & 3 of my surgeries, because I had a loop ileostomy and everything came out faster. I didn't realize I had so little energy until I had my takedown and I was like "wow"

5) Can you tolerate alcohol, if so, how much?

I drank wine coolers, but haven't gone crazy, remember without a colon your body doesn't absorb water the same so you have to be careful to not dehydrate and alcohol dehydrates you.

6) Are you on any meds?

I currently have a bout of pouchitis and am taking Flagyl but will wean off. They also recommend taking VSL3 (probiotic) to keep good bacteria in the gut, thus keeping pouchitis in remission. Sometimes I will take immodium before bed.

Good luck in your decision, do your research. Find the best colorectal surgeon. Go to jpouch.org and look at posts from people, but remember some that go there are having issues, just like this support board. Those having no problems are out living their lives and not posting, but it will give you more knowledge. I received more information/advice from there than I did my surgeon.
Theresa

Originally diagnosed with CD in 1991
Now saying "Undetermined Colitis"
3 step Jpoucher as of 4-15-08


*Jen*
Veteran Member


Date Joined Jul 2005
Total Posts : 514
   Posted 12/24/2008 10:25 PM (GMT -6)   
Just wanted to say I know how you feel. Mine isn't "severe" either, but man those flares hurt and the last for weeks. It is NO fun and during a flare(that feels like it will never end) I just want my life back. But on the other hand I think what if they find a cure and I have removed my colon already?? My doc said that I will likely never need surgery, but then I think about having to put up with another 50 years of this.
Diagnosed: 
Officially Diagnosed with UC in June 2003.  Have had stomach issues since 1989.  Unknown if they are related or not.  Have mild/moderate UC.  Have had 4 flares, the last one caused by hormones from stopping breastfeeding.  Currently back in remission!  Only taking 6 Asacol a day.   Will take Rowasa enemas as needed. Colozal did not work for me.  Luckily my UC is relatively minor and responds well to meds, but man do those flares hurt!
 
 


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/24/2008 11:14 PM (GMT -6)   
Good thread. I am close to the end of my rope too, even though I have not had severe UC either other than an initial attack long ago. But nowadays it is also never in full remission and is now prednisone dependent, unless remicade finally gets me off it (so far it is working but not that much). I second the advice to go to jpouch.org which is full of great j-pouchers, veteran and newbie alike. The downside of lurking there for me were two realizations. First, i discovered that the "gold standard" goal of 4-6 bowel movements a day with a j-pouch that is often 'advertised" seems to be a lie, as far as I can tell, from what I have seen from the posters with pouches- 6-12 seems to be more common, and an awfully lot seem to have at least one in the middle of the night. That frequency (even 6) would be about as high as my worst flares, so that's a downer but I suppose if it is, it is. At least it's not as urgent as with UC and presumably not painful either (unless one has pouchitis, which for most is a rare and passing thing). Second, it seems as if alot of j-pouchers end up not disease free at all, but instead with chronic pouchitis, med dependence (imodium and cipro seem to be common, and even prednisone, Imuran, 6MP and remicade for some I think) and other issues. But as was earlier posted, that forum may be disproportionately populated by posts from those with issues, so I hope it's true that the vast majority of pouchers are a "silent majority", like Sue (though 8 a day sounds depressing to me- I don't even pee 8 x a day as far as I can tell). who do very well with the pouches. I "know" I will get a pouch soon enough, and I know life will never be the same without a colon, but I also feel that on balance, even with all the negatives, it will be a big improvement. But I'm hanging on for now in hope that remicade will finally do the trick- at least for a while.


Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 

Post Edited (Probiotic) : 12/24/2008 10:20:05 PM (GMT-7)


kickboxer
Regular Member


Date Joined Sep 2007
Total Posts : 123
   Posted 12/25/2008 9:35 AM (GMT -6)   
Thanks for the replies everybody. My doctor also said I will never likely need surgery but will most definitely be on and off prednisone and other meds for the rest of my life. I truly feel that there won't be a cure for this disease in my lifetime. I feel this way because of the obvious business culture the medical industry, and industry it is, has adopted. Not to get too off topic, but if they cure us, there goes the billions of dollars we spend on meds like prednisone, 5ASA's, biologics and simple over the counter things throughout our lives. And I know life will no longer be the same without a colon but I feel that by going on and off prednisone my whole life I will eventually end up with more grief than just my UC symptoms. What if I develope osteoporosis or diabetes as a result of prednisone? Not only would I have UC now but due to the meds I had been on my whole life to control it, I would have adopted some other lovely diseases, when really, I could have just cut the grief out at the source, literaly. It all sounds so great to think of having the surgery and going on to a "normal" life but then at the same time I think what if something goes wrong or they discover something they werent expecting to find and I end up with a permanent bag when I wake up, I would rather be on meds my whole life then be with a permanent bag. It's all so disheartening, really the only symptom that truly bothers me is the urgency, I can deal with the pain and the blood but the urgency and the embarrassing situations it can cause keep me alienated from doing certain things while i'm flaring.
VSL#3
Progressive - Calcium and Magnesium supplement
FibreSmart - fibre supplement
New Chapter Organics - Unbound Energy, Multivitamins


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/25/2008 11:06 AM (GMT -6)   
There may not be a cure but a much better treatment could occur in the next +/- 5 yrs or so as science is making very good progress with understanding what causes UC.

Having to have 6-12 short non-urgent BMs without pain, blood, mucous, spasms and taking no more meds sounds much better to me, so surgery may not be all that bad. I am weighing my options and if I can tolerate it I'll wait a few more years and see what develops...but if God forbid I get worse and the meds no longer work, it's bye bye colon and UC and good riddens!
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/26/2008 10:19 AM (GMT -6)   
Here is what I was told by surgeons: 3-10 BMs per day (most people average 6), about a 1/3 of patients get pouchitis at some time, most people can eat most foods (but depends on the person), 90-95% success rate
 
I'm similar to Probiotic. On my worst flare day, I go up to 8x. And I'm able to eat most things as long as it is within moderation. I also haven't had to use the bathroom during the night since diagnosis, and it takes me forever to fall asleep, so nighttime BMs would be horrible for me. But there is no cure coming in the near future and almost all the new meds being tested are biologics (although they are looking at stem cells but it will take a long time for that to come out as a treatment). I don't want to be on biologics for the rest of my life. Who knows what the side effects from it will be in 20 years? Also, how long will it be until Remicade stops working? I ended up on Remicade within one year of diagnosis, so I'll need surgery sooner or later. The question is, do I do it on my own terms while I'm relatively healthy and on my parent's insurance, or wait for Remi to stop working?
 
ARGH, I hate the unpredictability of this disease! And it's sometimes hard to accept that I'll never be the same as someone with a normal colon. 
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/26/2008 12:00 PM (GMT -6)   
ComedyDork, How is the remicade working so far and any side efeects?
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2832
   Posted 12/26/2008 4:00 PM (GMT -6)   
One area where I am convinced there is alot of potential for a powerful non-toxic cure or at worst, dampener of UC (though it seems much more effective for CD and also asthma and allergies) is in helminth (parasitic worm) therapy. I'm always surprised at how few have even tried it. I benefited a fair amount from TSO but not enough to prevent flaring and not enough to get off pred. If it was more powerful in its effect on me I'd put up with the horrendous cost. Zero toxicity and zero side effects. (I tried hookworm therapy too but that gave me GI side effects and didn't seem to improve me.) But, like biologics, this area is being refined very very slowly, and the big money is all on deriving drugs from the worms rather than using the parasites, even though i think this is just going to create side effects and be less effective than the worms themselves, since they have been co-resident with humans and our ape ancestors for millions of years as opposed to 10 years or so for stuff like Remicade. What sucks for us with IBD when it comes to new drug development is that we are still a rare disease... hence we are just chickenfeed for research and development funding vs. cancers, heart disease, and the other cash cows of the industry. So therefore I agree things will evolve slowly. Once we can all afford to have our own genomes mapped, maybe in ten years, drug refinements that avoid toxicity will accelerate I'm sure, but for those of us who are already refractory patients, that is way too late I think.
Pancolitis ~20 years, once had a full med-free 10 year remission,
but flaring/simmering on and off for years, allergic to all 5ASAs
15ish mg pred, 100 mg Imuran TCM
Probiotics (PD, Cust.Probiot., Culturelle, VSL3, etc), DMSO, TSO, hookworm
Turmeric/circumin, boswellia, fish oil, many vits/minerals
Lower-carb version of Specific Carb Diet (SCD), Remicade newbie
 
 
 


mjw82704
Regular Member


Date Joined Dec 2006
Total Posts : 251
   Posted 12/26/2008 4:44 PM (GMT -6)   
Is Pouchitis similar to UC? I looked it up on the internet and it sure sounds similar yikes! I am thinking about surgery as well and if I have a chance of getting Pouchitis I am wondering if it is worth it???????
Left-sided colitis diagnosed at age 28 in 2001
Asacol 4 pills 3 times per day
Hydrocortisone Enema and Rowasa Enema rotating days for the next thirty days
Prenatal vitamins


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/27/2008 10:52 AM (GMT -6)   

bbc, Remicade is working well. I'm still not in a full remission yet (morning urgency, unpredictable BMs), but my GI thinks that it is IBS and not UC.

Pouchitis does sound similar to UC, but it is treated with antibiotics and one can reduce the chance of pouchitis by taking probiotics. Here's more info: http://www.mayoclinic.org/pouchitis/

I forgot to mention in my last post that a GI at the Cleveland Clinic recommended only staying on Remicade for one year since long-term side effects are unknown. He said that he has had patients who have stopped Remicade and have stayed in remission with just 5-ASAs. If that doesn't work, then he recommends to have surgery instead of staying on Remicade (or another biologic). He also said that he personally would rather try TSO instead of Remicade. The problem is that you have to order TSO from Europe and it's pretty expensive, whereas I don't have to pay anything for Remicade.


Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/27/2008 7:17 PM (GMT -6)   
kickboxer said...
I've got a few question about the J-Pouch if any of you have a minute to respond..

1) How many times are you going a day? How do you know when you have to go, I would imagine it's a different feeling as opposed to when you had a colon.
2) Can you really eat anything you want?
3) Is it harder to put on/keep on weight?
4) what are your energy levels like post colon?
5) Can you tolerate alcohol, if so, how much?
6) Are you on any meds?

Thanks for your time, as you can probably tell I'm getting very frustrated with this darn disease and although my case is not too severe I would much rather not have to deal with these symptoms ever again, I'm only 22 and the thought of living like this for the rest of my life is not acceptabe


You have the right attitude: it is not acceptable.

1. I don't really know. Between 6 and 10. It's not urgent; feels more like pressure. I can and do hold it, so it doesn't disrupt my life. For instance, if I'm in the window seat on an airplane, I can wait until the passengers between me and the aisle get up for their own purposes before I have to visit the lav.

2. Yes; I eat what I want. I don't eat late at night (after 9 or so) because I don't like having to wake up to go to the bathroom. But again--it's not painful if I do. Not really different than if I drank a huge glass of water before retiring.

3. No difficulties putting or keeping on weight. I am a weight trainer, and was back to lifting heavy weights earlier than the surgeon said I should be both times. (Don't tell!) My muscle came back completely, as far as I can tell.

4. Energy levels are totally normal.

5. Alcohol is no problem in any amount I have cared to consume.

6. I take probiotics once a day, Imodium am and pm, and Metamucil after most meals.

Chronic pouchitis is comparatively rare; fewer than 10% of all j-pouchers. For myself, being "dependent" on Imodium, a medication that I can get OTC in any pharmacy in North America, is a very different thing from being "dependent" on IBD meds (and especially than being steroid-dependent or dependent on Remicade, which sounded too much like cancer treatment for me).

I would urge anyone disgusted or disheartened or whatever by the idea of "the bag" to get better information about it, especially before writing off the j-pouch out of fear of having a permanent ileostomy. The ileostomy is no fun to get used to, but even it was far more livable than the totally fraudulent appearance of life I had with UC, and I would go back to it without hesitation if the j-pouch failed.

I think there will be replacement colons grown from our own cells within my lifetime, but at this point I wouldn't be interested in pursuing one if it were available.

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/27/2008 8:35 PM (GMT -6)   
Thans and I'm glad you're finally feeling better.  If iy's IBS that's giving some addl problems then definetly keep an eye on certain foods.
ComedyDork said...

bbc, Remicade is working well. I'm still not in a full remission yet (morning urgency, unpredictable BMs), but my GI thinks that it is IBS and not UC.

Pouchitis does sound similar to UC, but it is treated with antibiotics and one can reduce the chance of pouchitis by taking probiotics. Here's more info: http://www.mayoclinic.org/pouchitis/

I forgot to mention in my last post that a GI at the Cleveland Clinic recommended only staying on Remicade for one year since long-term side effects are unknown. He said that he has had patients who have stopped Remicade and have stayed in remission with just 5-ASAs. If that doesn't work, then he recommends to have surgery instead of staying on Remicade (or another biologic). He also said that he personally would rather try TSO instead of Remicade. The problem is that you have to order TSO from Europe and it's pretty expensive, whereas I don't have to pay anything for Remicade.


Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


RobinByrd
Veteran Member


Date Joined Dec 2008
Total Posts : 511
   Posted 12/28/2008 7:17 AM (GMT -6)   
We are opting for surgery b/c I do have moderate/severe pancolitis and it is horrible!!! I feel as though we have an intruder lurking amongst us, and it is completely unaccpetable. The medications for this disease do have horrible side effects (once you've hit the levels of Remicade and prednisone dependency), and so in addition to the UC you have other medical complications. I've told my story several times, but I really do not want others to experience what I have...open wounds are not fun!! My poor immune system is so low and staph infections keep popping up...I've been on antibiotics since October and actually battled MRSA, super scary!

This disease is not going to be cured any time soon with medication...I do not plan on waiting around for some miracle to make it all better. I am taking control and taking back what is mine...my life...my energy...time with my son and family instead of runs to the bathroom. The high doses of prednisone also took my physical appearance...I'm taking back my body image and my identity. I am good at not allowing others to see my struggles, but why should I have secrets? No one deserves to suffer.

I am so happy for those of you who find treatments that work and ultimately remission.

I have also joined j-pouch.org and find their support and guidance very comforting...as I have from many members here. : )

I wish everyone luck with their treatments and decisions regarding their future. I know what is best for me and my family, and you know what is best for you and yours. Each situation is unique to the individual...it's just really nice knowing that we are not the only ones struggling.

: ) Robin
Dx-May 2007  Asacol-2400mg bid  Prednisone-20mg  Remicade-4 Tx
28 year old Mommy of a 1 year old and a Wife for almost 2 years!
Life has never been so sweet!  I appreciate the small things in life...the little joys that occur every second of every day.  Though we struggle and have crazy complications, nothing can over ride our love and happiness.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 12/28/2008 10:59 AM (GMT -6)   
RobinByrd, I'm glad you have come to a decision. Keep us updated on how everything works out!
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 

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