what is j-pouch surgery?

I was also bothered by the statement that "you CAN get this disease into remission." I'm proof that this isn't always the case, and I'm not alone. (and sadly some people, like myself are diagnosed and then need surgery soon after)

This surgery isn't something that is entered into lightly by anyone. Some people are curious about it (regardless of how ill or well they are), the same way some are about remicade or humira. I would never tell someone to have jpouch surgery just because i had it, the same way I wouldn't tell someone not to have the surgery if had i obtained remission from meds.

Melissa

I was able to get this disease into remission for a year 3timechamp. The entire time Ive had UC, Ive been on prednisone. So pretty much all 6yrs. Ive had sulfasalazine, asacol, imuran, remicade. I wish I knew then what I know now about prednisone and the surgical option. I would have jumped on it asap and enjoyed my mid 20s instead of live like a semi hermit with anxiety issues (thx to pred).


Also thanks Collicat, Im now understanding the pouch better. The stretching part really gives me a better idea. It sucks as a guy when we have to wait for the stalls to open up since most bathrooms come equipped with 1 stall and a few urinals but the ability to hold it would be great. I do drink a lot of water (1 1/2 - 2 gallons a day) so Im sure Ill be in the bathroom a lot in the beginning. Im not going to the bathroom as much now but during flares it feels like I sit in the bathoom all day. I can take the pain but I just cant handle the anxiety with always worrying about being near a restroom. I think surgery would be a good option for me to get full control of my life back.

summerstorm,i never said ALL can be put in remission,BUT MORE THAN 50% CAN.Lets educate everyone about all options.

So know you can read my mind that i'm making a BLANKET STATEMENT.You like a good arguement.You are very wrong in regards to my post.If someone has posted something regarding surgery and they were just diagnosed recently and you don't educate them on ALL options then your doing them a disservice.Please go back and read my post,more people don't need surgery than do.If you have to go the surgery route i totally understand,i was close to Heavens door-GOD BLESS YOU and GOOD LUCK.

Hey, all...

I just wanted to thank EVERYONE for their input on this issue. I have a lot to say after reading everyone's posts, so bear with me:

Yes, I am newly diagnosed. I've had 2 terrbile flares in 4 months in which I'm sick for 3 weeks each time. Having a 2 1/2 year old & a 10-month old - it's downright dangerous that I'm leaving my children practically alone for 20 + times a day that I need to run to the bathroom & am immobilized with stomach pain beforehand. During my last flare - it broke my heart that I couldn't even WALK with my son while he rode his tricycle on the sidewalk without throwing myself into a crippling stomach ache.

Being hospitalized again is not an option because my mom then takes my kids so my husband can work, & I have a handicapped sister - so 2 kids + my sister is just too much to handle. I know that having this disease is hard on anyone who has it... & these are my circumstances that make the disease particularly difficult on me.

I have a hard time coming to grips that I'm in my 20's & am taking upwards of 25 pills a day & a nightly enema. Each of those medications has serious side effects. Just yesterday I had to have 2 areas on my back biopsied at the dermatologist due to odd skin changes that I'm strongly thinking is related to my elongated prednisone use. So, I now have a chance that I have skin cancer... IN MY 20's.

Please keep in mind that my husband & I also want to have 2-3 more children. That's 2-3 more pregnancies that I'd then be succumbing my unborn babies to the "possible" effects of each of these medications as well. If something should ever happen that the babies are unhealthy - how could I NOT think that it had SOMETHING to do with any or all of the medicines I'm putting into my body... how would I ever forgive myself?

I'm now seeing a new doctor who is weaning me off of the prednisole & has added a 6MP to hopefully take over as the prednisone is decreased. I'm happy with this solution, for now... but if this doesn't work I know that Remicade is the suggested next step. However, after all the research I've done - I'm just not comfortable with the idea the biologics & think that surgery would lead to a better quality of & healtheir life for me overall - & the idea of being MEDICINE FREE is very very appealing.

If you would have mentioned surgery to me last week - I would have cried thinking "I'M NOT THAT SICK - THERE ARE TONS OF OTHER MEDICATIONS OUT THERE TO TRY!" However, is taking 25 + pills a day each with their own dangerous side effects & then having to take suppliments because those medicines rob your body of so many other vital nutrients really the best option?

I know that surgery is a HUGE step. (Having a thyroidectomy & 2 C-sections - I know how scary it is to be wheeled into that operating room.)

Here's my ongoing throught: IS INTERRUPTING MY LIFE 6 + TIMES A DAY TO REMEMBER TO TAKE SO MANY POTENTIALLY DANGEROUS PILLS SOMETHING I WANT TO DO FOR THE REST OF MY LIFE? PLUS, IF I FORGET ONE DOSE - I'M PUTTING MYSELF AT RISK FOR ANOTHER 3-WEEK FLARE - EVEN IF I REMEMBER EVERY DOSE EVERY DAY - AN UNEXPECTED FLARE IS INEVITABLE! THEN I MISS OUT ON MY KIDS, MY JOB, MY LIFE! CAN I DO THAT FOR THE NEXT 70 YEARS KNOWING THAT I CAN BE SLIGHTLY INCONVENIECED FOR 6 MONTHS DURING RECOVERY & WILL BE CURED & BE ABLE TO LIVE PAIN, MEDICINE & SIDE-EFFECT FREE?

Plus - my new doctor said (& I'm in totall agreement) that you don't want to wait until EVERYTHING else has failed before considering surgery. By that time - your colon is usually so unhealthy at that point that the success of the surgery can be compromised.

I'm proud of myself for being so comfortable with this decision so early on. It usually takes people years to finally "give-in" to the idea & then wished they'd done it much earlier. I'm not going to jump into anything, but I'm really concerned with these potent medicines that I'm pushing so often. (I agree with Clicky's statement @ Remicade.) I've made up my mind that Remicade is just not something I want to do & think that surgery is a much safer option long-term...

Phew! Thanks for listening... hopefully I've answered some of your questions. Keep posting on this issue! I appreciated everyone's viewpoint!

Phyre72

I think you are generally healthier after the surgery - the inflammation goes away with the colon. If you have Chrons, surgery is not a cure because the inflammation can spread but for UC, it is a "cure". I have heard that j-pouch surgery can impact the ability to get pregnant. I have read varying opinions on the topic but according to my doctor, surgery should be taken very seriously for women of childbearing age who want children. Seeing that you want 2-3 more children, it is definitely something to consider. It doesn't make you infertile but it can make it harder to get pregnant. I, personally, wouldn't worry about expanding your family until you are in stable health. It sounds like you are already struggling to keep ahead of everything on your plate.

I hope you are feeling better soon.

Phyre 72,

I am amazed at your maturity for only being in your 20's. It is great that you are talking with your doctors and a lot of people who have been through this about all your options.

It seems that the results concerning inflammation in other sites of your body are varied. I think both Suebear and Summerstorm have said that they improved after surgery...they can correct me if I am wrong. I have also heard that others have not. My son, Dillon (18), did have a lot of joint pain/muscle pain before but I think that was more due to the multitude of prednisone tapers that he went through. Since surgery these pains have completely gone away.

When Dillon's UC was at it's worse his whole body was very sick. Every time they took blood almost all the values would be highlighted in red. He became very anemic and no matter what we did...he had four blood transfusions (which I will worry about until the day I die)... they could not get the numbers to stay up. He was also having weekly venafer infusions and his iron stores remained at zero. A lot of his organs were being affected, not necessarily due to inflammation, but the side effects of improper blood supply. There were issues with his liver and his heart rate was sitting around 120 all the time and increasing up to 160. These were just side effects of the disease....nothing to do with the drugs (which we all know have their own issues). I have said before that the magical part was that within about a month post surgery, except for the actual surgical recovery, he was completely healthy. Every test came back normal.

I will say again that surgery is not for everyone, but for us it was the absolute right answer. I regard his surgeon as our guardian angel and will be indebted to her for the rest of our lives.

That being said, this surgery is very involved and has a fairly high complication rate. A lot of people sail right through it but a lot also have complications. Dillon had more than his fair-share but he would go through it again in a heart beat. He now feels better than he can remember. Almost all the complications can be dealt with but may need a longer hospital stay. Amazingly, the stats say that even for people who had complications , a year post surgery 90%-95% would go through it again. You should make sure that you are fully informed by your doctor and please spend the time to hunt down the best colorectal surgeon that you are accessible to.

The only fault I find in your logic is that you mention that you might be "slightly inconvenienced for six months" while you recover. You might be lucky and be one that does sail through these operations, but for us it was much more substantial and I believe that is the case for most. I just don't want you possibly heading into surgery with false expectations.

I wish you all the best and hope that you are feeling better soon. You really seem to have the maturity to weigh all your options and figure out what is best for you and your family.

Wishing you all the best. We are always happy to answer any questions concerning the road that we have travelled.

Cathy ( and Dillon)

I am currently on Imuran & Salofalk, have been diagnosed with pancolitis & am thinking of opting for surgery. Just want to get rid of pancolitis completely. I think for me (I noticed nobody has really mentioned it here) its the stress of always looking in the loo when you have had a runny one (or two) just the horrible feeling of your heart in your stomach when you see the blood in the loo.. again! As well as putting my partner through all this too.
I'm only going to the toilet once a day now but have noticed after 11 months on Imuran that a bit of blood tinged mucous in the stool but only twice in two weeks. I'm just sick of it, I am on 2 Imurans per day, what is the next step?
Can you up the amount of Imuran?

it's for life. in rare cases in which the j-pouch fails, another pouch can be constructed from your small intestine. also any patients who are unhappy with their j-pouch can opt to have a permanent ileostomy instead.

both options are much better than life with moderate to severe UC.

Not trying to live too long anyway. Id rather go while I can wipe my own butt but thats another topic. When theyre making your pouch, can you ask the doctor to make a bigger than usual pouch so it can hold more?

The size is probably to keep as much small intestine as possible doing its normal job. It also would probably be more like to fail. Im not positve on that though.

emma that was alot of what got me, i was always worried if therew as gonna be a bathroom and if a med was working i was always worried of when it would fail. And really they were never working cause i couldnt eatnormal foods or actually feel good.
I dont know how much immuran you are on, to know if you can up it. However i know that it cant be a really high dose.

Summerstorm...I just noticed that you mention a "rash on your hands" What do you mean? When Dillon was at his sickest he had both his hands go really red...like they were sunburnt. The docs did not know what this was. At the time he was on Remicade and they wondered if it was some side effect of that. Since surgery the redness is slowly fading. IT is almost gone but I can still see it at times. Is this like what you had?

Thanks for the info,
Cathy

Thanks for the info Summerstorm. Sounds different but wow there are some weird things that go on in our bodies!