I am so sorry to hear that. I do hope that the meds get the cancer. Prayers to you.

I am so sorry of your diagnosis. Crazy odds that you are dealing with this. Is the reason for your j pouch in the first place because of colon cancer? I just wanted to wish you well....many prayers to you that this gets resolved.

You have an amazing attitude considering the news. I'm so sorry you got that 'news.' Please let us know how things are progressing. I'll keep everything crossed that the multiple killings and murders will do the job exactly right.

kathy

I had colitis for 20 years, and finally had a colonoscopy that showed mild dysplasia. so I decided to do the surgery and take everything out so that I wouldn't get colon cancer. (that didn't quite work out as well as expected, but what can you do).

Its a lot easier on everybody to have a positive attitude. Everybody on this board has been given a gift of years of life thanks to the surgery and treatment. You just have to remember that it is all a gift.

JPouch2001,

My history is almost the same as yours, UC (or so we thought) for 20 years, low grade dysplasia, colon came out. My doctors have mentioned to me that this history, along with ulcers in pouch and in ileum, concerns them and I was specifically told I will have to have a pouchoscopy every year due to the rectal cuff cancer concern. They biopsied me this year and I was OK but I worry about this situation occurring, as should all of us.

I hope your treatment goes well and they can eliminate the cancer. Good luck and let us know how it goes with your treatment.

I agree with Kathy, you're attitude is amazing and your perseverance is admirable. I wish you well in this latest journey. Keep us updated; my thoughts are with you.

Sue

JPouch2001

Sending prayers your way. I just had my 1st surgery done here last
week after LGD turned up on a colonoscopy earlier this year. Seems
like more and more of us are reaching this point in the road after
years and years of UC. I think with Holly and UC1970 there are three of
us who have all recently had surgery for LGD.

The doc said my rectum was pretty beat up and took it down to the bare
minimum needed to form a j pouch but there's still always that risk.
They also have recommended yearly rectal cuff exams and lot's of
biopsies.

I hope you kick it's arse! But I must say, in all honestly, you might need to use a 308 over a 9mm

Oh absolutely the worst crappy lottery to ever win! Rarity means ziltch when it is you. I agree with everyone else that your attitude is awesome, and whether it is just for show or not, a positive attitude actually does make a difference. If remission is possible, it is only when you believe in the fight.

Here's wishing you the best. Your plan seems sound to me, with aggressive treatment before going in and messing with it surgically.

And one more thing, yes, every day is a gift we should not take for granted!

Jan

Nah, positive attitudes are important. Our company motto is "Attitude is Everything". I even have it emblazoned on my cycling kit. I learned a long time ago that worry is a downpayment on pain you might never experience. I figure that whatever I'm going to go through over the next year, it doesn't make any of that pain go away to worry about it now.

Everybody on this site has had to make the same decisions, when your disease is trying to eat you alive, do you give up and cry or just keep walking forward. We've all chosen to keep on walking forward.

I'm determined to live through this and keep going. Just keep walking.

You are right. None of us have gone through all that we have, some more than others, to quit now.

Thank you for explaining your diagnosis and treatment plan.

Take care

You are amazing and I wish you the best of luck.

Ran my second round of chemo today. 5FU, Leucovorin, Irinotecan, oxaliplatin, avastin. Made a new ringtone for my phone. A middle chunk from Eye of the Tiger from Survivor:

Risin' up, straight to the top
Had the guts, got the glory
Went the distance now I'm not gonna stop
Just a man and his will to survive

It's the eye of the tiger,
it's the thrill of the fight
Risin' up to the challenge of our rival
And the last known survivor stalks his prey in the night
And he's watchin' us all with the eye of the tiger

Moving past "Just keep walking" moving on to kicking its butt.

You are an inspiration! Keep moving, stay hydrated. Physical activity and plenty of water will help with the side effects of the chemo.

Hi JP2001,

Your story is hitting home right now in ways I would never, ever have expected. First let me say that I can really appreciate your plan to fight this thing with a vengence. I truly believe that this disease is very unpredictable and if you don't watch it and protect yourself like it is aiways laying in the weeds it can be surprising and cunning. You also are at the mercy of the diagnostic abilities of your medical professionals that are really only human.

Here is our story,me and my big brother:

We are from a big family and luckly for the rest of the kids only he and I have UC. He is 57 and has had UC for 55 years. I am 49 and have had UC for 41 years. Actually I had my colon removed 13 years ago and have a jpouch that has never worked very well. Now thanks to this site I have learned that I have had cuffitis (not pouchitis)since my UC was always very low down, actually tecnically proctitis until later when my entire colon was ulcerated and was removed to save my life.

Back to my brother. He was in remission for 17 years with little or no flares by the grace of God. I figured I was the one who took it for the team. 2 weeks ago he had his annual colonoscopy and they found mild displasia. He is going to have a jpouch done which is great and I am confident that he won't have as many problems as I have because he isn't as sick as I let myself get, plus I know so much more about how to take care of myself and a pouch now after 13 years and all the awareness there is now compared to when I first had my colon removed.I know I can help him. I was feeling really confident and ready to take all this on until I read your post and found out how things can be overlooked. We have had a pretty laid back attitude about when he should have the surgery because it isn't serious yet. Do you think we should get this done sooner? I am out of the country right now and am dealing with my own upcoming sutgery and want to go home to be with him when he has his. Should we wait? I could probably put mine off if need be if we are risking more serious problems. Do you think they just overlooked the beginiings of your tumor all along? I don't want to sound like I am over reacting but I never thought either one of us were at risk for this kind of thing. Even though with UC and IBD the chances of colon cancer go way up we have no cancer in our family. Seriously, none. None of our grandparenst or ancestors died of cancer on either side.

Sorry to blather on and on but this is the first I have felt the need to bring this situation to this forum. I have been really scared and worried and also sick myself and I guess having a story that relates sort of brought me to splill my guts. I don't want to take away from how scary your situation is,I just thought you might be able to connect some dots for me right now.

I think you have got that tumor on the run, that is the way I like to look at things too. Good on you!!

Keep us all informed on how you are winning the battle!

Dear Samantha,

I'm sorry to hear of all of your problems,I have cuffitis so really relate to you, and your brother. You mentioned that you are needing surgery and I was wondering what the surgery is and also if you are going to the Mayo Clinic?

I wonder if tumors like Jpouch2001 can be seen in CT scans or MRI's? I am assuming they could be visible in PET scans but know they are expensive. Are you going to ask your doctors about having something like this done?

I know this case is rare but so is my chronic cuffitis and IPS.

Please keep us updated about you and your brother.

J-pouch2001,

How do you feel after your chemo? Is it the kind that will make you sick? Sorry if that's a dumb question. I use to think all chemo made the patients ill but have heard that some of them don't these days.

Your ring tone sounds awesome!

HI Samantha,

I'm really sorry to hear that you and your brother are both working through this mess. At least you'll have a surgery buddy. It does seem that the cancer I got was latent in the cuff from the beginning, but it took years to progress to a real tumor. I've been hunting through the literature and have only been able to find a handful of cases out of the many thousands who've had jpouches. I don't think I would push anyone to panic over it, just know that if you had proctitis with dysplasia, it wouldn't hurt to have a scan a few years out. Because I was lucky enough to get a full blockage to get my attention, we've been able to go after this before it spread to my liver or pancreas or lungs or brain etc.

So I should be in good shape to survive.

So far the chemo has been pretty manageable. Mostly feels like colitis symptoms. Cramps, gas, nausea, constant diarrhea. Throw in headaches, profound exhaustion for a few days and watch your hair start falling out. I keep waking up thinking that there are spiders crawling on my face only to realize that its clumps of hair falling out in my sleep.

My daughter is waiting for to all fall out, then we're going to shave my head and paint it blue.

They implanted a port in my chest with a catheter straight to my heart so that they can get the chemo delivered more efficiently with quicker spread and fewer side effects. I also got hooked up with a 48 hour infusion pump for constant drug adminstration. So I dropped it in the back pocket of my cycling jersey and took it out on a long bike ride. Gotta show it who's boss.

Hi Samantha,

I just had my colon removed earlier this month after finding low grade
dysplasia back in January of this year. For me it took a while because
I wanted a second opinion and then with researching and seeing a really
good surgeon plus getting everything squared away to cover my absence
from work. My GI told me back in January if I chose to wait to have
another screening colonoscopy done in six months with many more biopsies.

I'd say to take some time and find a really good surgeon. Also you might want to get a really top notch pathologist to review the biopsies to confirm the LGD. They sent mine to Dr. Petrus at the Ameripath GI Institute in OH, according to my GI he's the best IBD pathologist in
the US.

I just got news yesterday that the pathology tests on my removed colon
showed a lot of severe inflammation and a few pockets of LGD but
everything was benign, no cancer.

Haven't posted in a while. I've now finished, and survived almost 8 months of really hard core chemo. 13 rounds. But my rectal cuff cancer tumor is down from baseball sized to undetectable, and no longer inoperable. I am now in my third week of daily radiation therapy and daily chemo. Back to the bag in June.

JP2001,
I just read your first post and did not realize it was back in July until I read your last post. Congratulations on the completion of your chemo and the shrinkage of your tumor. This is amazing news and with one more hump of radiation, treatment is over. I am sure it was not easy but the worst is behind you and you can now concentrate on getting stronger and growing some hair back. By the way, how did you look with a blue head??? I bet your daughter loved it!!

And the old saying, "Attitude is more important than fact" was taped to my refrigerator when my boys were growing up. It is oh, so true. I hope you are doing well and that the radiation treatments will not be too harsh on you. You are in my prayers.

JP2001,
Thanks for posting the good progress report. I hope you keep on doing well and totally beat this thing forever!

So, I just joined this board now, because I saw your initial post and was wondering what the outcome has been for JP2001. Any updates?? I hope you're doing all right! You are certainly a brave soul and seem to have the best attitude I've ever heard a person having in such a difficult situation. 

 

I'm replying to this thread because I sort of related to your symptoms and now I am scared. Although, I am a female and it seemed as though you are a male so perhaps the anatomical stuff is more complicated to figure out. Here's my own explanation. Anyone have any feedback at all? I'm going to make a doctors appointment ASAP to get to the bottom of this (no pun intended.) But in the meantime I wanted to start a conversation with some more experienced folks.

 

I've had my J pouch for about 4 years. I'm 34. It was extremely successful and I haven't needed any imodium and have had pouchitis once.

 

Lately some stuff has changed. 

 

I was admittedly kinda "feeling around" down there a couple of nights ago, because I felt a sore spot in the perineum, between the lady parts and the anus on the right side.

 

It was not a dermatology issue - which is what the internet seems to keep bringing up. It is underneath the skin, in a rather weird area that is best described as the perineum.

 

It feels elongated, with a hard bulbous area in the middle. I hope it is only scar tissue. I have read that women have difficulty giving vaginal births sometimes if they have scar tissue from a J pouch surgery.

 

I've had some difficulty passing stools, where I feel partially "blocked" and need to apply a bit more force to get it out as you have described. I've had some bleeding, but only transient and none of it ever showed up in the waste that I've passed.

 

Last October, I had a mysterious hospitalization from rectal pain and nothing showed up on the CT scan or the scope. The pain disappeared with a course of antibiotics. 5 months later, I had some lower back pain and nothing showed up on the X ray and my doctor said it wasn't the right place for it to be ankylosing spondylitis. The lower back pain disappeared after 2 months. Neither incident had an explanation. 

 

Now that I've felt this hard area I am wondering how you tell the difference between a tumor and scar tissue. What kinds of diagnostic tests should I ask for? I need to be efficient about this because I have high copays on my insurance and can't afford to repeat X rays, CT scans, and bloodwork if nothing showed up on those before. I really want to figure this out and it's annoying me that I keep getting passed around and told "nothing is wrong." Something funky is up.

Sue,

don't jump so quickly to a cancer diagnosis. I had similar symptoms to yours about 8 or 9 years ago, and it tuned out to be a recto-vaginal fistula. My pouch at the time was 10 years old, and in May 2015 my pouch will be 19 years old!

 

I felt the pain of an abscess that they couldn't find when I went to emergency in pain. A few months later it was back and "broke" through my vagina. You may have an abscess brewing. It may or may not turn into a fistula. Not fun, but not as serious as cancer.

 

c-jay

 

Thanks so much for your reply.

 

What was done to diagnose your fistula?

Could be a blocked duct or inflamed Bartholin's gland. I had a weird, hard, "ropey" type inflammation in a similar spot last year. My GYN figured it was an infection somewhere blocking a duct and put me on antibiotics. She was more concerned about a superficial lesion she thought looked like herpes (turned out it was not). A week or two later everything was back to normal.

 

Another thing I have seen with some members here is a leak at the suture line causing an abscess and/or fistula. So, I would get this checked out sooner rather than later. If you can't get in to see your GI doc, see your GYN.

 

Jan

JPouch2001 hasn't posted here since March 2013.

CT,

We are responding to Rebel Sue who posted today with issues.

 

C-jay

Yeah, but Rebel Sue did inquire about the original poster. Sadly, he has not posted in a couple of years, but did login in May 2014. 

 

Jan

RebelSue asked in her post what the outcome was for JPouch2001.  Answer is JPouch2001 hasn't posted since March 2013, so we don't know.

Yeah so I think the abscess hypothesis might be worth pursuing. I made a doctor's appointment but it isn't until April 17th. I might have to call again and try to be seen sooner because this morning I believe it got bigger and it is sore. I don't think most tumors grow that fast. I was pushing harder than usual to go this morning which isn't normal for a pouch at all. I'm worried.

 

It's sad that my first thought is, I hope this isn't too expensive. My second thought is, I hope I don't have to miss too much work. (I like having a job after being bed ridden with my UC for so many years.) My last thought is...oh god...I hope I don't lose my pouch. I dealt with the bag well enough for a year, but I'm not sure how I'd handle having it forever.

 

I also have an anxiety disorder, so there's that factor that's totally making me crazy. Glad this board is here so I don't have to panic to my husband and make him worry, too.

Dear Rebel Sue,

I've had pain in the perineum and bleeding coming from a place I thought was up a half inch or so into the vag. I've done many self examinations with a mirror and medical gloves on, sorry it TMI.  I isolated the exact place where the blood was coming out - just put TP in different locations until I knew where the blood was coming from and I could feel a bump.  Since that is a very sensitive part of our bodies I imagined it to be larger than it actually was .  

 

I also have chronic cuffitis and now pouchitis.  I'm also old enough to be your mother. I hope what you are experiencing is caused by a similar reason. I discussed it with my Internist as she also covers my female parts. I'm glad she knows a lot about IBD and J-pouches.  I had myself talked into it being a Rectal Vaginal fistula or some kind of sinus.  It wasn't that and went away but has reappeared several times.  Those were times caused by me being sore due to my over cleansing of the area. (We don't want feces in our lady parts.) Since I got my bidet seat I no longer have the problem. 

 

Any time I see blood on TP I have to find out why or I imagine it's leading to something drastic and the removal of my j-pouch.  I'm worrying less as my pouch 4+ years old.  I'm dealing with chronic pouchitis and cuffitis now with daily antibiotdics and Canasa suppositories.

 

A few months ago I was in a lot of pain and needing to push - which we shouldn't do. I used the "turbo" function of my bidet to give myself little enemas.  That was the only way I could get my pouch empty.  I went to all soft foods and noting helped.  I was also rotating 2 different antibiotics every 2 weeks and using VSL#3DS and s.boulardii. I thought I had a blockage at the top of my j-pouch so emailed my GI at Mayo's.  I told him about my excruciating pain and that I thought I was having blockages at the top of my j-pouch. During a subsequent pouchoscopy the GI did a balloon dilation at the bottom of the short side of the J. (I don't remember all the medical terms.  Some call that area at the bottom "2 eyes".  There are 2 holes before the cuff when picturing our j-pouches from the bottom up. One is from the long side of the J and the other from the short side.) My husband and I got to see the "before" and "after" pictures of the inflamed closed side and then the after of  it open. I am still having problems but don't need increased pain medication and use of antispasmodics.  I am just dealing with it with the enemas and heavy duty antibiotics.  It might need dilating again but shouldn't expect to have another one right away.  Patience is not one of my virtues. I need to give it time to get the inflammation down!

 

Long story to say if you think you have a blockage in your pouch get it checked out. The dilation was no big deal.  He told me ahead of time that they were expecting the dilation and I signed the paper work while laying on the procedure table.  We are not supposed to push. My pouch has grown up to be a large pouch. I don't want it prolapsing on it's self so need to use water instead of pushing.  I worry about getting dependent on this but it is what it is.

 

They have changed the antibiotics I'm rotating as I couldn't take Flagyl anymore.  IMO it's a lot of trial and error.  I've stopped using VSL#3DS concurrently with the antibiotics and am hoping to get in a routine that includes a week of probiotics in-between my rotating antibiotics.  The probiotics have not kept me from getting pouchitis - I think.....I've taken 2-3 packets of it by it's self and other variations.  I've been using them since my pouch was around 6 months old.

 

There is a lot of discussion in the "Women's" group here about pregnancies and pouches  

 

The man that started this thread said something like worrying is thinking of the worst outcome.  I can tell myself that over and over again and it doesn't sink in.  At a Christian woman's conference one of the speakers spoke worry. It improved my worry about my children, who were both in college then. She said there is no use in worrying about something that we can not control.  For example I stopped worrying if they were out partying and the possibility of them getting in car accidents.  I had no control over that.  We'd raised them to be responsible adults and that was all we could do about it. I feel I have some control over my pouch but not as much as I'd like.   

 

I need to learn how to do that with all of my medical problems. What I see as the worst that could happen pouch wise is that I would loose it. There are a lot of people living well with their stoma's.  I had a dreadful time with mine.

 

Take care and please update us.