Our Message Board

Please use this message board page to post your comments and ask general questions, concerns or share your story.

If you’d like to become a jpouch.net blogger please send an email to Mark Hilton: mdhilton@gmail.com

Mark, 24 Jul 08

82 Responses to “Our Message Board”

Dee Kramer says:

September 14th, 2008 at 4:04 pm

Does anyone know of a connection between drinking alcohol (a glass of Scotch or one glass of wine) and pouchitis.

Thanks
Dee

dkramer@uwaterloo.ca

[Reply]
Megan says:

September 14th, 2008 at 8:47 pm

Hi Dee,

I haven’t heard of a direct connection between alcohol and pouchitis. But just because we haven’t heard of that connection, does not mean it may not exist.

Here is a link to a post we did about jpouch and alchol. The link will connect you to other forum posts on http://www.jpouch.org site. You should post your concern on jpouch.org and you’ll get some better feedback there.

http://ucstory.wordpress.com/2008/06/15/j-pouch-and-alcohol/

Take care,
megan

[Reply]
sally says:

September 17th, 2008 at 4:42 am

hi im 47 female and have had both surgery’s and now have a j pouch. my surgery was about 10 years ago. I had my take down in december and the following october i gave birth to a wonderful and healty baby girl by c section. i have also had four older children that have had the surgery. one of my daughters had both surgerys done in one and thus never had to have the illeostomy. she is doing great.

[Reply]
ml Reply:
July 1st, 2009 at 5:37 am
So I was told that one needed to wait a year for the body to heal to attempt to have a baby. This just wasnt in our grand plan but obviously someone else has a greater plan. It seems as if you are saying you got pregnant pretty quick after your take down. Did you worry about the healing time? I have so many questions. Please contact me. Thanks.

[Reply]
mary says:

September 28th, 2008 at 12:41 am

I HAD MY FIRST SON LAST YEAR AND THE ONLY WEIRD THINGS THAT I DEFFINATLY KNOW TO KEEP AN EYE ON WITH MY NEXT PREGNANCY IS THIS – because of my insides being rearanged during my surgery my son had limited room to move and stayed in the same position for monthes and came out with positinal torticallis and positinal plagio that took pt and 2 helmets to fix. hes fine but next time if that babys not moving around cause theres no room they need to do it manually. also i kept telling my obgyn how i had a bump that looked like a hernia near my stoma and they kept telling me it was probably the babys behind or somthing poking out. well they were wrong it was a stomal hernia from the pregnancy but my gi said it didnt need surgery unless it gets biggger or starts hurting me which it dosnt but it messes with positioning the appliance so i have leaks all the time and am going threw a couple of bags a day somtimes so i might just elect to have the surgery anyway because the hernia is soooooooooo anoying!!

[Reply]
Jimmy says:

December 29th, 2008 at 9:03 pm

Back to Dee Kramers original question above. The correlation of the scotch and wine to pouchitis is the sugar content. In the j pouch group I am in Michael May has told us since he cut out sugars in his diet is has reduced his possibility of pouchitis greatly. Sorry to not tell you something else that wouldn’t involve you cutting out the Scotch and wine.
Happy New Year 09

[Reply]
ACash75 says:

January 1st, 2009 at 8:01 pm

I’m a 33 year old woman. I just had my take-down surgery two weeks ago today. Initially my surgeon wanted to wait another month because my JPouch surgery had been done only two months before, but I had a skin infection forming around my stoma that was causing me a lot of pain and I couldn’t get my bag to stay so I was having lots of problems with leaks (changing my bag 4-5 times a day). The surgery went really well. I lived with an ostomy bag for a total of 8 months. The first ileostomy I had was easier than the second because my bags stayed put and I didn’t have leaks. It was really difficult for me self-esteem wise. There were so many clothes I couldn’t wear any longer. I didn’t feel like I could do yoga or go running (my bag was ALWAYS filling up) and I missed those things so much. Mentally I just couldn’t get to a place of acceptance with the bag. I was trying, and if I HAD to, I know I would have made it work, but I would have needed a lot more support. I am so happy to be living without a bag. I’ll deal with a sore bum and multiple trips to the bathroom to be bag-free! It’s funny for me to read people who have the opposite opinion. We’re all so different! It’s good to know all sides of the issue.

[Reply]
Eric says:

January 2nd, 2009 at 12:33 pm

Holy cow, 4-5 times a day? I thought I had it bad when my site was irritated and I had to change my bag every other day. Thanks for sharing, it makes going through this a lot easier.

[Reply]
Jeff says:

January 24th, 2009 at 9:13 am

Dee,
I had my reconnect in November and just getting back to enjoying my libations. Only issue I had was with the scar tissue closing up on me and the need for dilation (had to go under this time) a casual bevrage with meals and few sociable drinks with friends have not really been an issue.
I do have cont issues and nary a day goes by without a remnant in thy shorts. Hoping that as time goes by this will decrease and will move back to a “new normal” scenario. have had a few burning issues (avoid Doritos for a few months) but found a great cream from colo-plast.
anybody with positive feedback that knows when this gets better is appreciated, my wife has been a saint but she can only take so much!!!
Thanks
new to the site
Jeff

[Reply]
Gina Chapman Reply:
June 30th, 2009 at 8:53 pm
Try soaking in a hot bath with Epsom Salts. Then i use the A&D ointment. When you say dilation are you talking about anal stenosis? I have that problem too. Does your doctor put you under to do that? It is the most painful thing ever! I had natural child birth twice and this is right up there…just doesn’t last as long…but it really hurts.

[Reply]
Stephanie Hyche says:

February 18th, 2009 at 1:31 pm

Just to echo others (and a question to ask…) thank you all so much for coordinating and contributing to this site. I am a 34 year old female diagnosed with UC for 3 years. I am proceeding with j-pouch surgery consultation on March 23rd and am so appreciative of the vast amount of information (both medical and psychological) that I have found here. Speaking to the “women’s issues” and “body image issues” concerns, I can tell you that I was diagnosed about half way through my second pregnancy and my son was born healthy at full term. That was three years ago and I have had only two reasonable periods of remission. I know that for me, these surgical procedures and new lifestyle are going to be a mind game – way more mental than physical. I am a self-professed control freak. I have a request of my own…If anyone can share information on going through this process while being overweight, I would love to talk. Prior to being ill, I decided to get my life together and I lost over 100 pounds through dieting and exercise. Of course, that is what makes this whole thing so crazy… I was the healthiest I had been in my life. While not at my ideal weight, I was happy and healthy at about 165 (I’m 5′9″). Since my diagnosis, I have lost and gained weight though flare ups and steroid use, and, having been back on prednisone most recently for about 6 months now, I am pushing 200 pounds. I wouldn’t really care about this, except that as a result of my earlier major weight loss, and now re-gain, I have lots of belly fat and loose skin. I am very worried about placement of the stoma and healing from incisions, etc. My silver lining is that if I come through this unscathed, I think I can justify getting a tummy tuck in a few years! I would love to correspond with anyone who has any insight. Thank you all again for sharing. This site has made it easy for me to compile my ever-growing list of questions for my surgeon! sth@uwa.edu

[Reply]
sig says:

February 26th, 2009 at 5:16 am

Thanks for your entire Blog, seems great. Have not had time to read most of it yet, however may I ask if there is a way to search for, here, or focus in on, those participating (on your blog here or other blogs attached) who have a j-pouch, a reconnection (no longer wear the pouch), and also have had colon/rectal cancer (only those)? For example, having had radiation treatments, and then a lot of chemotherapy, and then the surgeries and j-pouch now also, it may be that some of my aches and pains (to put some of them mildly may be due to those several treatments, not a history of UC as such, and continuing aftereffects of those cancer treatments.

[Reply]
Eric says:

February 26th, 2009 at 8:34 am

Hi sig, you can try the search function in the upper right corner of all the pages, and if that isn’t powerful enough, you can search using Google by typing this: [your search term] site:jpouch.net

[Reply]
Lisa says:

March 10th, 2009 at 1:25 pm

I am an almost 30 wife and mother who has FAP (Familial Adenomatous Polyposis). I had my large intestine removed and had a temporary ileostomy for three months so everything could heal. I was lucky because I was diagnosed only with FAP, most people at my age already have colon cancer so as I said I was lucky. Both of my kids and nieces have FAP so I’m keeping a close eye on mine. As for women’s issues, I have lots and so does my girlfriend with the same disease. We have Polycystic Ovarian Disease. I was told I could never get pregnant so I was surprised when I found out I was pretty far along. My daughter was easy I knew with her at 3 weeks. After learning about this in 2008 I had my tubes tied so we couldn’t have anymore children. My mom was the “mutant” and my sister died of FAP in 1978 when she was 3 (a rare form of it), my brother was diagnosed with colon cancer in 2006 at 25. I would love to be able to share more my story if possible.

[Reply]
Jessica says:

March 23rd, 2009 at 4:43 pm

Your website is fantastic and I wish it was around in 2006 when I had my surgery. I often wished I documented my journey to help others and am so thrilled by how brave you are. I noticed you were interested in stories from a female’s perspective, especially in regards to fertility. My surgeon was very wary on my ability to have children, 6 months into my recovery, my husband and I found that I was pregnant! Kai is 17 months old now and I couldn’t be better than ever!

[Reply]
Kanaka Reply:
May 27th, 2009 at 9:37 pm
Jessica you are my hope too….I just had my first surgery. although I am having a lot of complications after my surgery (my stoma stops working for no reason and needs muscle relaxant to make it work!), leading to tummy cramps. But am so hoping after my second surgery, I will heal and be healthy and then next year have a healthy pregnancy and a healthy baby.

ALL: I got Ulcerative colitis and stopped responding to medications last year. Was admitted in hospital on IV steroids.
Now I am having so much complication with my ostomy!
1. It stops working on its own and I need muscle relaxant for it to start working. Today, it did not even work fter 2 valiums..and had to take one more.
2. Skin around the stoma is all peeled off and bad
They want to do my second surgery on 19th June and I think we have no choice…but a so weak and do not know what to expect from second surgery after all this…
Not sure if there is hope

[Reply]
Gina Chapman Reply:
June 30th, 2009 at 9:05 pm
There is always hope. Have you had your second surgery yet? I am 42 and had my jpouch surgery in 2003. I have been through some very trying times like all of us on the site. I too had UC and my body became steroid resistant. I had 9 units of blood the week before my first life or death surgery. After the first surgery my bladder quit working. I came home from the hospital (7 days in) and had to self cath myself everytime i needed to void. So cath to pee, bag to crap…i was a basket case. I cried every day. The stoma I had with my temporary ostomy had a complete separation and the fell into the wound. OUCH! the stool would not empty into the bag correctly so i had to purchase a special band and ostomy supply to push into the stoma to see if that would help. the acid in the waste burned my skin and the skin tore…i wanted to die! I was so scared! Then after the take down i had an obstruction and was in the hospital 7 more days. Thank the good LORD above the obstruction passed, but it was awful. Now years later i only deal with pouchitis and anal stenosis and oh yeah, i had a fistula. THis past October I had surgery to insert a seton to help prepare my body for the fistulotomy which i had in December. Luckily the muscle tissue wasn’t so involved and they only had to cut about a 1/4 of an inch of sphincter tissue. THat is much better now. I do feel that as I cut sugar out of the diet the pouchitis is better. I hope your second surgery was successful and that you are feeling much better. Life is good!

[Reply]
Charissa D. says:

March 28th, 2009 at 7:59 am

Hey everyone i’m finding this site helpful, i had my j pouch surgery about 2 years ago and im just started to face problems.. i was wondering if i could talk to anyone about them?

[Reply]
Lizz says:

March 28th, 2009 at 8:12 am

Of course, shoot.

[Reply]
Mark says:

March 28th, 2009 at 8:22 am

Hi charissa, Like Liz said “Of course, shoot” if you want to private message any of us, just send me an email at mdhilton@gmail.com and I can either chat with you or get you the emails of other bloggers that might be able to help you depending on your problems. We have women, men, open and closed surgery, all types of complictions, etc…Just let us know. Also, you can try http://www.jpouch.org which has a wonderful support forum for people facing jpouch related problems.

Mark

[Reply]
Christine Chavez says:

March 30th, 2009 at 9:46 am

I wanted to join in, as my husband has just had a full colectomy with j-pouch, due to FAP. I have journaled his journey as well as pics of his recovery from surgery til now. He had his surgery March 17, 2009, and as of today he is fine, besides gas pains have got the best of him, really. Because he didn’t have any signs or symptoms previously, with FAP, you don’t know you have it unless you get a colonoscopy early on, or until you already have cancer and are showing signs of that. So he doesn’t so much feel relieved as some with UC do, but he does feel good about having the surgery because it was a life saver for him. My husband is 30 years old and his father passed away at 42 of colon cancer. Our children will get tested a year from now for FAP and will follow there dad’s footsteps if it turns out they also have FAP.

I just want to note, I found this website and showed it to my husband and we both enjoyed your story it helped us to prepare before the surgery and helped us to better understand what we can be facing in recovery. My husband found Mark’s story inspiring to journal his own journey because there is not a lot of info regarding this same surgery with patients who have FAP, as with UC. My husband whose name is Ricardo was unsure of getting the stoma, our Dr. had said once they open him up is when she would know for sure if the stoma was needed or not, and it wasn’t needed so he went from getting the colon and rectum removed to just using the J-pouch. We would love to post his story.

[Reply]
Christine Chavez says:

March 30th, 2009 at 10:00 am

Mark just a question did you have your surgery at UCSF Mount Zion? We were looking at the pics from your story and some of the backgrounds in your pics looked familiar. My husband had his surgery done there and we loved the care there. We are from Sacramento, CA. so not too far from SF, because with FAP it’s genetic, which his father had, we had went to genetic counseling in SF and was referred to a wonderful Doctor that specialized in laporscopic colectomies with J-Pouch and also was very familiar with the FAP disease so for us that made us feel very confident in who we were having do the surgery and to help us better understand what we were facing.

[Reply]
Mark says:

March 30th, 2009 at 12:55 pm

Hi Christine, FAP is one heck of a sleeper disease that most people don’t know about but it so incredibly serious. Did you see the post Megan recently on March being cancer awareness month and talking about FAP and sharing links to another FAP’ers story http://www.jpouch.net/2009/03/11/march-is-colon-cancer-awareness-month/

Yes, those are the infamous UCSF Mt.Zion hallways, I grew up right outside Sac and having such great care in SF was hard to pass up. We were only highly satisfied with the level of care received. The doctors and nurses were outstanding on all regards. We have others on here who are UCSF as well, both Jamie and Brevin are getting UCSF care.

That is great that you and Ricardo documented your story, the surgery and all. Of course, we would be happy to host your story. We don’t have anyone on the site who has shared their FAP surgery story, and we think that is very important to share since we do have readers with FAP having the surgeries. And I know the issues with having FAP related surgery are different because like you wrote, there isn’t the physical relief of getting rid of the UC, but the mental relief of fighting cancer.

When you are ready to share just send me a private email at my email mdhilton@gmail.com and we’ll get you all set up to share your story.

[Reply]
J-pouch Life says:

March 31st, 2009 at 1:01 pm

[...] recently had Christine and Ricardo post some comments. Ricardo on March 17 had 1-step surgery due to FAP. So he bypassed having the [...]
Deborah Waugh says:

April 8th, 2009 at 5:51 am

I am at the childrens hospital in st paul ,mn….im sitting in the childrens family resource center crying my heart out ….my son (14) will be having a J pouch surgery done this afternoon….I am scared to death!!!!! He has been so sick for so long and I know this is the right thing for him….Still my heart is breaking to see him so vulnerable laying in his hospital bed hooked up to IVs and lines….I wonder what the future holds for him and I…..He has missed so much school..>After 18 months of steroids..asacol…vancomyecin…blood transfusions , ferrous sulfate..and everything else under the sun, we got the call monday morning to drive 12 hours from home to have him admitted here…Maybe this isnt the right place for me to cry my heart out but I just felt I needed to get this off my chest so I can be strong today for Jacob….Anyway….its nice to read some of the good outcomes of this extensive procedure….Not too sure how the bag wil go over at school and how well he will hide it…he has so many concerns about the odor…noise…etc….anyway..What doesnt kill us makes us stronger….right????..God bless u all and thanks for letting me cry my heart out….

[Reply]
Jamie says:

April 8th, 2009 at 9:23 am

hi deborah –

you are in good hands at sp paul children’s hospital. i spent some time there as a kid and they always took wonderful care of me. It sounds like you and your son have been through a lot but it also sounds like he is a fighter and will come through this beautifully. Kids are even more resilient than adults and i hope that he bounces back quickly once he gets his diseased colon removed. Good Luck!

[Reply]
Mark says:

April 8th, 2009 at 12:51 pm

This picture is one of my favorites, it is of Mandy (16 years old) with her temp ileo and her friend – they had gotten her all taped up and ready to go water skiing – http://www.jpouch.net/2008/07/14/a-picture-speaks-1001-words/

Coping with the bag and his body changes is all in how the family and friends normalize the situation. You don’t need to worry about people knowing about it at school, or noise, or smell, all of those things are so minor. There was NO SMELL on mine EVER. And my stoma did gurgle some in the first few weeks, but once it settled down so did the noise, and also, I just stayed away from foods that made me uncomfortable and gassy – noise problem
solved.

Be sure to read through all the Surgery Stories and Photos, you’ll find on mine that my life went back to normal so quickly and it was immediate that I didn’t feel UC sick any longer. I’m 18 months out of surgery and living totally normal and healthy with my jpouch. Then look at Gil’s story, she is 16 and doing well. Casey had her surgery at 21 and is back to school and doing well. Carter 22 years old, back to living well.

My recommendation is to get him home, through him a welcome home with NO COLON party, bring his closest friends, show their parents or them photos on this blog and do things you can to normalize the situation – that is the main way to get through this strange transition you all your lives.

[Reply]
Christine Chavez says:

April 9th, 2009 at 9:38 pm

Hello Deborah I wish you and your son all the best, I could imagine I am a mother also of a 13 year old boy and 7 & 8 year old girls, my husband just had the surgery and to see him go through it and seeing him trying his best to recover while being strong, I can’t imagine my kids going through it, however my husband had the surgery for a genetic mutation that has a 50% chance of getting passed down to our children and so in a year or so my two youngest children will get tested for the same genetic mutation and if they test positive they will have to follow in there dads footsteps at an early age to prevent colon cancer. I pray for a speedy and good recovery for your son and it is okay to cry it sometimes makes you feel good afterward, and seeing your son healthier and happier after having this surgery will pay off it will just take time. All the best.

Ricardo and Christine Chavez

[Reply]
Christine Chavez says:

April 9th, 2009 at 10:21 pm

QUESTION: Ricardo came home with his JP drain from the hospital and today we got it removed, the nurse said he had it in long enough and he was starting to feel pain where the JP was, he described his pain of like a pulsing pain, however after calling the nurse this morning regarding the pain that however had started throughout the night , she said to come in right away to make sure it wasn’t infected and to remove it, so we did and of course it stung really bad when she removed it, once he got his color back and started to breath he was fine, but on the way home he started to feel pain in that area and he took ibuprofen so from around 3pm today till now he has felt a lot of pain in that area where the JP drain was and he wants to know if its normal. He has taken the ibuprofen twice and is using the heating pad and the pain just comes and goes but quite often and he still is draining from the area which the nurse said was normal for a couple of days it would be like this but she didn’t mention pain or discomfort. I know a lot of people get there’s taken out before leaving the hospital but for him he had it in since March 17th, and the nurse said it looked good no infection. If anyone can comment that would be great just letting him know this is normal makes him feel better.

Christine and Ricardo

[Reply]
Megan says:

April 10th, 2009 at 5:07 am

Hi Christine, that isn’t one thing we had to deal with. You may also want to copy and past your question into the General Discussion board over at http://www.jpouch.org, there you will get a broader audience and maybe someone will have some experience just like Ricardo.

Megan

[Reply]
eric says:

April 10th, 2009 at 9:32 am

Christine: I had some issues with my drain, the nurse who removed it left the little lead string in, so for a few days I had this piece of what appeared to be dental floss hanging out of my body. I wanted to pull it out, but I was also scared to. We were finally able to get in to the hospital again and have it removed by the technician. My point? Complications happen, so try to get in touch with the highest level person you can.

[Reply]
Chaz & Lori Burton says:

April 10th, 2009 at 11:55 am

Christine, My husband, Chaz, had step 1 surgery March 24th. They removed his drain in the hospital & it leaked for at least 2 days (a clear, pink liquid). At first it was like a faucet then slowed way down. Also, before it was removed he would complain of a pain there….almost at times, worse than his incision. After it was removed & we were home he still complained of a pain there especially when he got up & down. He had his staples removed this past Monday & oddly enough that seemed to help the pain a bit. Slowly each day it is better and better. I guess my point is……pain doesn’t necessarily mean something is wrong. We pray for a quick recovery!! Lori

[Reply]
Chaz & Lori Burton says:

April 10th, 2009 at 11:58 am

Also, Chaz came home from the hospital with prescription pain medicine, Vicadin. (not sure of spelling) You may want to see about something to take the edge off more than ibuprofen. Just a thought.

[Reply]
Jamie says:

April 10th, 2009 at 3:48 pm

i had pain in the area where the jp drain was. I had a ct in the hospital and it turned out the drain had flipped and was now in the wrong place and basically constantly poking at my pelvic tissues which was causing pain. I still had the pain in that are for about a week after they removed the drain – i think it was caused by irritation. Now the pain in that area is completely gone so i think it will just take time. Obviously if your husband develops a fever then call his surgeon ASAP as there may be an infection brewing. Take care!

[Reply]
Christine Chavez says:

April 10th, 2009 at 6:13 pm

Thank you all for your responses, it really helps us get through this and hopefully the pain will subside sooner then later. Ricardo did come home with some pain meds aside from Ibuprofen so he did start to take that early this morning which it did help for a while. We are thinking because he had it in so long that his tissue started to heal around the drain and once it got pulled out it might of ripped at his insides a bit. Well I hope everyone all the best, and thanks again.

Ricardo and Christine

[Reply]
Brevin says:

April 11th, 2009 at 9:09 pm

Hi Deborah! How is your son doing?

[Reply]
Brian says:

April 14th, 2009 at 11:13 am

I just had the j pouch procedure on March 9th and have been feeling very ill. Its been four weeks now and it has very, very slowly improved. I have some symptoms that I wanted to know if others also experienced. I have the urge to use the bathroom often and when I sit a clear fluid comes out. I know that mucus is normal and it is present, but the frequency and amount of fluid coming out is concerning. I have to sit down to urinate because I can not hold this fluid in.

I was finally accepted to medical school and start in August. My final surgery is June 8th where the loop will be pulled back in. I am afraid that I will feel as terrible as I do now and will be unable to deal with the stress of medical school. Please let me know if you anyone has these symptoms and if I should begin thinking about another plan for my career.

[Reply]
Brevin says:

April 14th, 2009 at 8:05 pm

Hi Brian. I haven’t had surgery yet, so I can’t comment on your initial question. But my two cents: If I ever find a doctor who actually underwent a major procedure, I will hunt that doctor down and book in advance. It’s one thing to talk to a doctor, and it’s another to talk to an actual patient who experienced it first hand. Having a doctor with the patient perspective can only be a blessing. Don’t feel the stress of Medical School; I think you’re destined for great things.

[Reply]
Mark says:

April 15th, 2009 at 6:54 pm

Hi Brian, I had a huge amount of mucus/fluid. Everytime I would go to urinate I would also empty the mucus/fluid and I couldn’t hold it in either. I was concerned too and told the surgeons but they all acted like it was fine. And when I posted about it on http://www.jpouch.org others told me that they had tons of mucus too. The surgeon mentioned that being able to feel that pressure on my anus while being able to hold it in without any leaking was a good sign that I wouldn’t have leakage once my jpouch was fully function. I had the mucus pretty much the 3 months before my temp ileo was disconnected but towards the end the mucus did seem to slow down some, I think part of it was my jpouch was adjusting and internal healing had happened.

[Reply]
Mark says:

April 15th, 2009 at 6:58 pm

Brian, Also, I know it is hard to say now but the majority of people with their jpouch have minimal complications and we tend to all get our lives back. You need to just stick to your plan for medical school and know that you are going through this surgery to get healthy so you can reach things like medical school. Read our stories on this site and you’ll find we all got back to our lives pretty fast (3-12 months range). And Jenelle, she has had some complications and stuff, but she is in the middle of Ph.D. program and her plans have been modified but it hasn’t stopped her from getting her degree – You may want to read her posts she really talks about small setbacks with her school, etc…but she is moving right along: http://www.jpouch.net/2009/02/19/update-for-surgery-round-2/

[Reply]
Julie Cooper says:

May 2nd, 2009 at 6:28 am

Hi Mark and Megan,
You said to let you know when i’d had my ‘takedown’ surgery. Well i had it done on the 21st April and initaily i was very ill post op with a lot of pain and sickness for about 4 days and stayed in hospital for 8 days, now i’m home and it’s great not having to change a pouch daily although now learning to cope and adapt with the frequent b/m’s. I don’t know if others feel like this but i’m finding this quite tough to deal with but i’ve heard it does get better.
This has been a very emotional journey for me as i realise it is exactly 3 years ago that i started with a flare up of U/C that never went away and this is the end of that journey.
Despite feeling delicate at the moment post op, i am so looking forward to spending time with my husband and our two dogs,friends and family without the specter of U/C hanging over us and plans for holidays and activities cancelled often at a moments notice.
Again, finding this site has been invaluable and a great source of inspiration whilst going through my operations, i only wish i’d have found you sooner.

Thank you so much.
Jules.

[Reply]
Megan says:

May 2nd, 2009 at 9:20 am

Hey Jules, it is great to hear from you again. So glad to hear you are through the surgery phases and now adjusting. Mark had a hard emotional ride in the first few months getting used to the jpouch BMs, especially right after surgery he was pretty melancholoy. It is true that with time the jpouch settles down and it does get much easier. In Mark’s 9-15 month update you can see how time helped him heal – http://www.jpouch.net/2009/01/04/mark-15-month-jpouch-update/

Stay in touch, Megan

[Reply]
Tina says:

May 13th, 2009 at 4:55 pm

Hi everyone!Sorry if I made some mistakes about my English,it s cause I am coming from Croatia..I am Martina,I am 17 years old and I have Crohn Disease.I have temporary stoma since 2003.After six years I am still hopping that doctors will take down my stoma,and you know how they say,hope die the last.I was looking for some stoma help equipment and I came to this page.When I was looking pictures of this people,and read their stories,I found myself in their stories.I saw on yours faces that you never give up..And my eyes teared up,because I am so happy that some of you have finally take down their stoma..I would be very thankful if we can keep in touch,because I am desperate..and I would be so happy if I could hape myself someway,and so that doctors can take my stoma down..So please,give me some information if you can..
Yours,Martina!

[Reply]
Jane says:

May 14th, 2009 at 9:47 am

Hello All, but especially Brian – After a routine colonoscopy in 2007, I was diagnosed with polyposis disease – simillar to FAP because I had a colon covered in polyps of all sizes, but no one in my famly has it, so the docs don’t think my conditon is genetic. At first the surgeon “simply” removed a portion of my colon, so I had a partial colectomy, but I never recovered any bowel function. It turns out that the remaining colon got all tangled up with adhesions and four (sick) weeks later I had the rest of the colon removed and J-Pouch surgery. I was in and out of the hospital for 5 weeks total across a , was on TPN (IV nutrition) for 7 weeks, continuing even after I got home from the hospital. I was very sick, thought I was going to die from the surgery, not from the disease!

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Jane says:

May 14th, 2009 at 9:54 am

My message got cut off – here’s the rest of the story.
I did eventually heal, and now, thankfully my small intestine is taking over for the lost function of my large intestine. I only have to go to the bathroom a few times a day, and once during the night, although I often try to “sleep” through that because I don’t want to get up (it doesn’t work to ignore it though…as I am sure you all well know). Recently I had balloon dilation procedure to open up the anastomosis site, and now I am functioning better. I changed my diet to soft foods – the immersion blender is my friend, and that is also helping my bowel functioning. (What bowel? Maybe I should say my J-pouch functioning!) I want to say to BRIAN – do go to medical school, your strength and bowel functioning will improve n time. Rest now, and try to get familiar with foods that will provide nutrition without irritation. You will get increasintly better – the first year after surgery is kind of difficult, but it gets better. Look up Rachel Naomi Remen, M.D.’s writing – she went to medical school after having a lifetime of issues (since childhood) with Crohn’s disease. She is very compassionate and used her knowledge of suffering to heal others. Many of us would choose a doctor simply because he had a j-pouch and understood our issues. By the way, I live in Seattle and I am 55 years old. I appreciate Christine and Ricardo’s story because there is SO very little about surgery caused by FAP!

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Tara says:

May 14th, 2009 at 9:14 pm

Hi. My name is Tara and I am 19 years old. I was diagnosed with U.C. in 2007 and had surgery in July 2008. I elected to have surgery to create a pouch because the medicines I had tried did not work and I did not want to endure the risks of Remecade. Also, since I was diagonsed I had to be hospitalized frequently for weeks at a time. I had to take medical leave my second semester of collge. Now, 10 months after surgery I still have pouchitis. In December 2008 I developed uveitis, or inflammation of the eye, and had to go on Imuran. I’m still glad I had the surgery because I do not have pain anymore. But i was wondering if anybody else developed uveitis or other symptoms of U.C. that occur outside the digestive system after the surgery, or if anyone experiences chronic pouchitis and what do you know about this? Also, for those who had a succesful surgery, how many times do you find yourself going a day.
Thank you for your help and sorry if I posted this in the wrong spot.

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Mark says:

May 15th, 2009 at 9:03 am

Hey Tara, Sorry the trouble you’ve had especially having to stop school. Unfortunately that does happen and we hear it a lot around. I don’t know uveitis, but it might good for Lizz to chime in here because she has had complications after her surgery but that is largely due to her Crohns diagnosis http://www.jpouch.net/2009/04/18/uc-v-crohns-questions/ Now, I’m defiantely not saying you have crohn’s but just saying she has had some major complications that could help you understand yours. I’ve only had pouchitis once in over a year and the cipro cleared it up. Do you take probiotics for pouchitis? And I know some people live with chronic pouchitis, and you should try posting on jpouch.org in the pouchitis section and get their feedback over there.

My BMs are holding pretty steady around 8 per day with sometimes more or less depending on diet, stress, metamucil/immodium use, etc…Here is my 9 month update that describes all my after surgery “stats” pretty well http://www.jpouch.net/2008/08/08/mark-9-month-jpouch-update/

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Aaron P says:

May 19th, 2009 at 7:53 am

First of all thanks for making this site. It has been a great resource for me and my wife.

Second of all, I have this feeling like I have to go to the bathroom that comes and goes with almost no relation to actual bowel movement. It can be pretty intense and is similar to the chill I used to get with UC. It has only been 6 days since my takedown and everything has been great except that feeling. Is this something that other people have. Does it go away? Do you just learn to ignore it?

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Mark says:

May 19th, 2009 at 9:34 am

Aaron, Glad the site has been helpful for you both, and congrats on the takedown. You know, those first few weeks after takedown were pretty rough on me both physically and emotionally. It was like I was living in this constant fear that the symptoms I was feeling were like UC therefore my takedown was going to fail. Now, none of that was true but it was hard to get used to the feelings of using my anus and bowel again. I had many UC like feelings for about 4 weeks, I had the chill feeling you mention, the anxiety of when next, I had high BMs early on, my anus and skin hurt, I was exhausted because I was up at night going to the bathroom. Then things started to mellow out and then I got used to the new feelings of having my jpouch and now things are really good. In that long answer to you, yes, I had something similiar and I should expect yours will go away with time once your body and mind accept that you are healthy and no longer plagued by UC.

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Mark Reply:
May 31st, 2009 at 2:03 pm
Chaz and Lori, read this post from me to Aaron. You may also want to respond to Aaron because it sounds like his feelings are a lot like yours. We need to get Brevin in the mix on this topic to see if he is feeling any pressure, etc…right out of takedown.

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Tara says:

May 19th, 2009 at 7:11 pm

Thank you Mark. That was really helpful. My doctor actually says I might have been misdiagnosed and I might actually have Crohns.

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Aaron P says:

May 20th, 2009 at 12:40 pm

Thank you so much Mark. All of that has been exactly what I am feeling. I have had myself all worked up thinking that something was horribly wrong and that maybe I had made a very bad decision. Good to know that I will once again be able to do the things I love. (With any luck year round since it won’t depend on a U.C. schedule)

On a side note to we have any athletes around here that can talk about any new challenges with the pouch as far as running, mountain biking, etc. ?

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Paul says:

May 21st, 2009 at 4:23 pm

I’ll keep you posted Aaron. I’m going to have my jpouch surgery next month and looking forward to the time I can get back to running marathons, which I haven’t been able to do for years.

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Chaz & Lori Burton says:

May 26th, 2009 at 1:53 pm

Hello guys, thanks for reading my question. I had my take down last week, May 21 and was out of the hospital 3 days later. Everything was going along smoothly. I started having my bm regularly and the wonderful Butt Burn began. Nothing out of the ordinary until the other day. Sometimes when I go into the bathroom and go I feel like I empty everything and there is a finality to the whole thing. It may take 30 minutes, but I feel like I am done. I can stand up, apply my cream, wipe the tears from my eyes, and go on. But other times in the day I feel like I have to crap all day. When I go in the bathroom I pass a little stool, and then my butt feels like I am pushing a golf ball out of it. I feel like my whole J-pouch is going to come out. I can try to squeeze my butt together, but that is almost impossible, I can stand up, but that feels like someone shoved a stick up my butt, no fun or I can sit on the toilet and moan and wait for the whole thing to settle down. Has anybody else had this in the early stages of the take down. It is like my J-pouch is spazing out on me. I am freaking out because it is so similar to symptoms I had pre surgery. I know this takes time, but please tell me I am not the only one that feels this way. Thanks
Chaz

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Eric Reply:
May 27th, 2009 at 10:05 am
Hi Chaz, sorry to hear about your issues. I know things can seem rough at first. For me, I had a lot of “leaks” in the beginning, for the first few days, especially at night. Once and a while I’ve noticed if I eat certain things I feel some of the issues you describe. Have you tried changing your diet? This sounds strange, but for me, when things are all off kilter, I get 2 Little Ceasar’s Pizzas and eat pizza for all three meals for 2 days. I’m not recommending that to you, but if you find something that works for you and you can stomach eating a lot of it (and it’s relatively healthy), you might want to try that to even things out. Additionally, they make these attachments for your toilet that are bidet’s you can install yourself. I’ll write up a post on them. I don’t use creams, but I do use the bidet (and swear by it). Hope you feel better, I know this doesn’t answer your question directly, but it’s important to remember that you’re not alone! We’re all going through these things! Hang in there.

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Chaz & Lori Burton Reply:
May 27th, 2009 at 5:36 pm
Thanks Eric, I am looking at my diet. I dramatically cut back on things today to see if I can relieve myself from all the gas I was having. It was a better day as far as my intense pressure that I was feeling. Yesterday I thought I was going to crap my pants every 3 or 4 minutes for about 9 hours. It was going on FOREVER (like the Sandlot’s kid.) Today my butt burn is still at level Red, but the bathroom trips have decreased from yesterday. Now I just need to figure out gives me gas???

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ml Reply:
July 1st, 2009 at 5:25 am
Oh all of this that I am learning that may happen and seems realistic to think that it will as it seems everyone has an issue is really freaking me out. I cant imagine being in the bathroom for more than three minutes. I don’t normally have that much time as it is. Any moms out there that could comment on how they handle being a mommy with all of this. I have two little ones. Three next month and 18 months. I really feel like I am going to moving backwards and away from the “good” life I have been living while in 3+years of remission from active colitis.

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Megan says:

May 26th, 2009 at 3:46 pm

Hi Everyone! Just wanted to make a quick post: my first surgery is this Friday! I decided to have the surgery after losing 2 years of my life to UC. I’m hoping to chronicle the surgery with pictures and imput from my friends and family (for times that I might not remember in the hospital) along with my own insights. Anyway, this site has been a great resource for me these last few months and I’m hoping to use my experience to help others. I’ve started a blog but haven’t got much going on it yet. But since I’ll have plenty of time once I’m recovering at home, I’ll get it all together and post the link here in case anyone is interested! Thanks!

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Paul Reply:
June 2nd, 2009 at 7:04 pm
Megan,
I hope all is going well and I’m looking forward to hearing about your experience.

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Kanaka says:

May 29th, 2009 at 10:41 am

Hi Mark and Megan,
This blog is very useful. I decided to get surgery done after having struggled with UC for almost 3 years. I got UC while being pregnant with my son in 2006. I never really responded to any medications fully and stopped responding to medications last year. Was admitted in hospital on IV steroids with no impact.
I had my surgery on April 17th. and have had complications since then.
Now I am having so much complication with my ostomy!
1. It stops working on its own and I need muscle relaxant for it to start working. Today, it did not even work after 2 valiums..and had to take one more.
2. Skin around the stoma is all peeled off and bad. It keeps burning and I am uncomfortable most of the time.

They want to do my second surgery on 19th June or sooner and I think we have no choice…but a so weak and do not know what to expect from second surgery after all this. I am really petrified about the second surgery especially after my experience of first surgery. I had severe stomach cramps after the first surgery. Still get them, especially when stoma stops to works. No pain killer has any impact on it.
What happens after the second surgery? How long is it before one can return to normal life?
Please give me hope…

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Alison says:

June 20th, 2009 at 9:14 am

Hi, i’m alison and i’m 13, i got my first surgery around a week or two ago and i had to have emergency surgery only a few days after because the stoma wasn’t stitched properly and air was getting into my stomach cavity. Anyways i wanted to thank you for this website because really helped me understand the surgery before i had it done, i even took photos of everything for future school assignments.
So to my question -i was wondering what tips people have for hiding the ileostomy bag under their clothing…?
Thanks so much!

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Brevin Reply:
June 20th, 2009 at 11:42 am
Hi Alison! Check this out:

http://www.youtube.com/watch?v=da0JXlLDBvs&eurl=http%3A%2F%2Fwww.facebook.com%2Finbox%2Freadmessage.php%3Ft%3D1066261979389%26mbox_pos%3D0&feature=player_embedded

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Alison Reply:
June 20th, 2009 at 4:24 pm
thanks

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Brevin Reply:
June 20th, 2009 at 10:45 pm
Oh, there’s also some extra tips for ladies apparently, so any ladies from this community, please help me out since I’m a dude and all. Erin mentioned this: “About the fancy lady underwear. It’s not specifically for ileo bags. Its so we ladies can smooth out curves and tummies that aren’t exactly in the spots we want. More to make our figures look better, but the nurses suggested them to kind of smooth out the bag. Hosiery is pretty complex to kind of counteract gravity. Tighten up the butt and thighs, flatten belly etc.”
Someone please help me out here. I’m blushing.

Erin Reply:
June 21st, 2009 at 5:38 pm
Alison, as far as clothing goes I’ve found that dummer dresses do a good job of hiding the ileo bag and tops that flare out from the upper waist down. I found a bunch of cute clothes at Ross and Kohls. That and there are support panties and hosiery that will help flatten it out.

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Erin Reply:
June 21st, 2009 at 5:39 pm
I meant *summer dresses hehe

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Alison Reply:
June 21st, 2009 at 6:32 pm
thanks so much guys, i did get a pair support panties and they are very helpful

Erin Reply:
June 21st, 2009 at 9:10 pm
Good, glad that’s working out for you.

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Erin Reply:
June 24th, 2009 at 12:11 am
So, the latest and greatest I found is something called a BeBand. Call me crazy because I happened upon it while walking through the maternity section on my way to the fitting room at Target. I tried it and it flattens the ileo bag out nicely under clothes and is pretty comfortable. The website is on the packaging: http://www.BeByBellaBand.com. I recommend the natural color one.

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Erin says:

June 21st, 2009 at 5:38 pm

I meant *summer dresses hehe

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Erin says:

June 21st, 2009 at 5:50 pm

hopefully this works. =) This is my J-Pouch surgery story: http://erinstevermer.blogspot.com/ This website has been insanely helpful for me. I really appreciate everyone’s input.

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Eric Reply:
June 21st, 2009 at 8:11 pm
Hey, glad you have found something useful here. Now that you have your own site, don’t forget to stop in once and a while and let us know how you’re doing! All the best, us Jpouchers.

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Brevin Reply:
June 22nd, 2009 at 11:37 pm
This post seems hidden in the message board. Slap this on the front page!

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ml says:

June 24th, 2009 at 3:31 pm

wondering what a k pouch is compared to a j pouch. Anyone know?

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Mark Reply:
June 24th, 2009 at 4:57 pm
A kock/koch/kpouch is a type of ostomy. The ostomy is inside the body and an open hole is left on the abdomen and then the person sticks a tub in the hole when they need to empty their pouch. They were a small bandage at all times over the kock pouch hole. See site here explain it better: http://ostomy.50megs.com/ostomies.html
Some people prefer this rather than an external ostomy.

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Mark Reply:
June 24th, 2009 at 4:59 pm
Here is a picture of Becca, you can see her bandage on her belly where her catheder would go when she empties waste:
http://www.jpouch.net/2008/06/18/a-picture-speaks-a-1000-word/

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ML says:

June 24th, 2009 at 6:09 pm

thanks for the info. It helped.
My next questions would be this.
I have heard a lot about weight loss/gain from surgery.
What is the norm. It seems some are on steriods and some arent. What is the norm?
I am not going into surgery with active UC so my weight is stable although a bit high from having back to back baby weight. I am heading into surgery because of high grade dysplasia and length of time with UC (10+years). So really what might I expect.

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ML says:

June 24th, 2009 at 6:10 pm

meant to say non active colitis.

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ML says:

July 10th, 2009 at 4:54 pm

so in photos posted while in hospital I see some of you were in gowns and others in normal clothes. Should I pack normal clothes does it depend on how long you will be there? What’s the real scoop?

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Alison Reply:
July 10th, 2009 at 5:30 pm
it doesn’t really matter i don’t think, just whatever you’re more comfortable in…i liked wearing my own clothes. i wish i’d brought some nice-ish pajamas for when they make you walk around the hospital, also wearing proper clothes made me feel a lot better
hope that helps

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Mark Reply:
July 10th, 2009 at 7:29 pm
Be sure to take a robe so that you can slip that over when you go walking. For me I wanted in my own clothes just so I felt normal and comfortable in and not sick in a hospital gown. But during the first surgery I couldn’t get into my own clothes until the 2nd to last day because I had the cathedar in which meant I couldn’t wear pants easily. During the 2nd takedown surgery I was done with the cathedar on the 2nd day and was in my own clothes. I agree with Alison that it doesn’t matter just what you are comfortable in.

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Erin Reply:
July 10th, 2009 at 10:28 pm
I didn’t wear my own clothes because my JP drain was leaking all the time, so I was changing my gown at least 1-2 times per day. I also had these stretchy hospital underwear, so didn’t feel too exposed in the gown. I wasn’t really in the hospital long enough to think about wearing normal clothes. I put some pajamas on 1 time to go to the hospital cafeteria with my mom. I thought the gown was easier because I was hooked up to so many things, I didn’t want to risk getting cords and tubes caught in my clothes. When I was walking around I safety pinned my JP drain to my gown because it felt weird when it moved around. You’ll know what makes you most comfortable when you get there.

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