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J-Pouch ForumsGeneral Discussion
Looking for guidance with Cleveland Clinic Experiences
LB Lori B
Lori B Marz, Thank you! I also posted this question on the JPouch facebook page and I the overwhelming response was to see Dr. Shen! He must be amazing! I am hoping I will still heal as I am only 8 weeks out, but I have to be proactive about it as well. I currently have a temporary ostomy and I am wanting to get rid of this thing asap! I know the best thing is to stay "diverted" with the ostomy so if I require another surgery I am already diverted. This was supposed to be a 3 month ordeal that is... [ more ]
marz dr. Shen is who you want to see at Cleveland Clinic in Ohio. It make take a few months to get an appt, but if you are persistent (and call everyday) there may be a cancellation. He is the one who found my problem (with a k pouch) after I went to 4 other doctors in different states. Looking back, I should have gone to Dr. shen first, but since I lived near Boston I decided to go to Lahey clinic first since it was close by. DR. shen found my problem immediately after my first scope with him. [ more ]
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J-Pouch ForumsGeneral Discussion
Shocking News
C capper
StarryNight ❤️
Bubba1028 Very young and so sad. Sounds like he lived a very full life. [ more ]
capper Not sure how many of you knew, but Chris was a contributor on this forum. Many years ago after my j-pouch surgery, he was an amazing help with his messages of support as I struggled to recover. He went through j-pouch surgeries and returned to the NFL, which I find was incredible. I have no idea what caused his death. Could it have been related to his UC / j-pouch? No idea... It doesn't sound like an accident, but who knows? I hadn't communicated with him in a few years but had checked in on... [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for others' experience with Remicade/Humira
J JHendrix
Momma Thanks jhendrix. Hopefully it is a temporary diversion but we need to wait and see how the Entyvio works and he might need some repair at his anastomosis as well. [ more ]
drone3 I was on Remicade for 1.5yrs until it stopped working and then switched over to Humira and MTX. The MTX helps to prevent anti-bodies forming. Generally they keep you on the biologic until it either stops working or you have an adverse reaction or complication. Overall, Humira feels weaker than remicade, i'm not sure if that's due to the smaller but more frequent doses or that it's my 2nd biologic or some other reason. [ more ]
JHendrix Thanks for that Momma. I'm sorry your son has had to go back to an ostomy. Is it thought to be temporary? I developed a reaction within weeks of one injection of Remicade. I had actually been given one dose of Remicade about 15 yrs prior. At the time the proticols were diffetent. (They didn't realize you couldn't take it sporadically.) I tested negative for antibodies before the recent infusion but clearly I developed them after that dose and thus reacted weeks later. That really helps me to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
florastor
J johnjthompson
Winterberry Hi, John. If you're taking a probiotic for the first time (or a new brand for the first time), it can take a few weeks for your gut to become acclimatized to the good bacteria. The gas you're experiencing could be the good bacteria re-populating your gut, a good sign, I think! It should resolve itself. I took Florastor for a few months shortly after my reversal and it helped, and I do remember some minor issues while my insides adjusted. I don't take probiotics anymore because everything is... [ more ]
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J-Pouch ForumsGeneral Discussion
Excessive gas and bloating
K KErd
drone3 I'm battling the gas issue as well. I have tried various things although you have to constantly take them. Here's some that is worth trying, most of these are taken 15-30min before the meal except the teas 1. Peppermint tea (i think this irritated my stomach) 2. Fennel tea (caused restless legs) 3. Enteric coated peppermint oil 4. Oregano oil 5. Triphala ayurvedic powder 6. Papaya 7. Lactoferrin 8. Cucumber and Celery fresh juice [ more ]
Still Standing You might try an elimination diet. I find that things like dairy cause me to become gassy. I also use Beano or Lactaid pills (actually the fake stuff from Walgreen) if I know I'm going to eat something that could possibly cause me gas. That usually helps prevent the unwanted and painful tummy issues. You asked for other natural cures for gas. I have used Peppermint tea with success. I have also had success with mixing powdered ginger with water and drinking that. To be honest though, I am... [ more ]
Rosie-Veg ❤️
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J-Pouch ForumsPouchitis
chronic pouchitis
KR Katie R
Scott F Antibiotics work best for most people, and it’s important to find the one(s) that work for you. If you’re already doing that there are a number of steps people take to see further improvement, including VSL #3 DS, Lomotil or Imodium at bed time, no meals in the later evening, and a bit of fatty food (like a spoonful of peanut butter) at bed time. [ more ]
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J-Pouch ForumsGeneral Discussion
2 nd surgery out of 3 and still pain
vallivalli
Kevinnn I think part of it was definitely related to the abscess, probably not the clot though. They did switch me to tramadol towards the end. It's not a narcotic and it still gave me good relief without the addictive nature and other side effects of the oxy. [ more ]
aka KNKLHEAD How are you doing? Now 30 days out, you shouldn't necessarily have "pain" I don't think? Enough to take pain meds? Soreness, maybe? [ more ]
AI_matrix lactuca virosa or (wild lettuce). you can get them in liquid extracts, botanics or capsules or just raw material. effects range from mild to sedative depending on the dosage. also, black pepper has a compound cannabinoid called beta - caryophellene (similar to cannabis) when consumed it has anti -inflammatory properties to help with pain. I don't like the side effects of opiates or their cancer causing chemicals in my body. Just try it? you might have no more sad faces ... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch advancement/revision stories
M Momma
jeane WAY TO go kinklehead [ more ]
aka KNKLHEAD I had a pouch revision surgery with Dr. Remzi. I almost forget all I went through, including three different ileostomies. (!) Two years out from my revision and I consider myself 100% normal. I am a very lucky guy and can't say enough about Dr. Remzi who said, simply, "you have a mechanical issue. I will fix you." Best wishes. [ more ]
jeane He’s the absolute best with the most experience. He will be doing my revision when I’m ready to face it. [ more ]
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J-Pouch ForumsOstomy & Skin
Few questions
M Momma
Momma My son has his jpouch and it was working great for about 18 months after takedown. Now he has chronic antibiotic resistant pouchitis as well as some separation at the anastomosis. He started entyvio for the pouchitis and the surgeons will do some more tests to see if they can do an advancement to fix the anastomosis. Then he can decide if he wants to fix it, leave it, or remove it. But right now he needs to focus on eating and regaining his strength. Poor kid has been through hell. He is... [ more ]
LORI726 I usually have a little rectal discharge every time I sit on the toilet to empty my bag. I always have tissues in my underwear because who knows when some extra discharge will happen. The discharge was very bothersome to me but now I have just become accustomed to it. As was mentioned before, it is not all bad because I feel sick when it lessens or stops (mostly b/c of antibiotic use for other reasons) I haven’t been able to gain weight with my loop ileo although I can’t imagine what would... [ more ]
Bobish I found that bathing the rear end in warm water encoraged the anus to relax meaning that I was able to more thoroughly empty the mucos. This eventually reduced to 2 times a day (one before bed and once when I got up). Hth [ more ]
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J-Pouch ForumsHelp! Need advice now!
Imodium
HockadooHockadoo
Sunflower70 It works great for me. I take 2 per day, rarely more. Have been doing that for over a year. Btw, if you've been taking Immodium for a while, don't stop it suddenly. Taper off slowly instead, if you want to stop for some reason. Otherwise, you risk withdrawal symptoms -- kind of flu-like. [ more ]
lablover Helps my husband... [ more ]
Ænigma Oh and for me Lomotil stops the feeling of having to go but Imodium slows the actual go. [ more ]
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J-Pouch ForumsGeneral Discussion
Pressure / pain at rectum / anus
JKCJKC
Marsh Chap @JKC hey did your concerns ever subside? I've had a j pouch since 2008 and a few weeks ago I started to experience what you described... [ more ]
Darrell Spurr Once again relief is a codiene pill away. if it makes you sleepy take only at night and least a good night sleep makes the rest easyer but I find a can take about 3 over the course of a day without side effects [ more ]
allswell I did have that for a while, maybe 7 months. I think I had a fissure also. After 7 months there was a gradual improvement and the last 3 months have been great. I am 14 months out. I just created a nice word problem. Hang in there - I was really doubtful for a while and missed the bag.....but not anymore! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Son back to loop ileo- questions
M Momma
Momma Yes always good to be home. He is a bit better today... a bit more energy and eating more. Hopeful he is on the mend. [ more ]
Jeffsmom Wow that was quick. Jeffrey is usually in for about two weeks. Aand complaining about pain for months. Im sure you both are happy to be in your own beds! [ more ]
Momma We got home from the hospital on Saturday. He’s out of pain and sleeping through the night (and day lol) and not living in the bathroom. So much better than last week, so thankful for that. I suppose this is all normal recuperation I just tend to over worry about everything. Drs never checked him for vitamin deficiency and I read some people need b shots and iron shots. I bought him some chewables. If we don’t see an improvement by next week I will escalate to the Drs again. I do think we... [ more ]
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J-Pouch ForumsGeneral Discussion
Organizing a meet up! Tampa-Sarasota area
NickPNickP
CTBarrister Update: game is on ESPN so staying at the condo tonight but open to going out for a meetup any other night. [ more ]
CTBarrister I am in Bradenton on vacation now through April 16 if anyone wants to organize a meetup. Last night I had dinner with my parents at the Beach House which is directly on the water in Holmes Beach: https://www.beachhousedining.com I ordered fish tacos with blackened mahi mahi, my father had a Grouper Sandwich and my mother got the crab cakes with fried green tomatoes. The food was good. This would be a good spot for a meeting in Bradenton. Tonight I am hunting for a sports bar at which I can... [ more ]
CTBarrister I belonged to a similar monthly CCFA support group in CT for around 5 years. Very few of the members of those groups have J Pouches and most do not even know what it is. They are mostly Crohn’s and UC patients. The usual topics at those meetings are diet, coping with the pressures of the disease including impacts on family/coworkers, coping with job related stress brought on by the disease, and recommendations on treatments/doctors. Usually there is a moderator of the group and he or she... [ more ]
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J-Pouch ForumsGeneral Discussion
Big wad of scar tissue
T Tanner
TE Marie Surgeons are not too cooperative about adhesion surgery as that surgery it's self can cause adhesions. Maybe since it is in that one identifiable place your surgeon would be willing to operate. I had abdominal operations where my adhesions were lysed during surgeries for other things and it really helped. [ more ]
lauren972 I had surgery to release a big adhesion a couple of months ago. I may be dealing with another adhesion. It’s an outpatient procedure. It took awhile to recover. As long as your bowels aren’t disrupted, you probably can continue to do what you are doing. [ more ]
RHolt I think the times I have had blockages (2 times), it is due to scar tissue. One was at the site of where the ostomy bag was and the other, I think, was at the site of the drainage bag. My scar tissue certainly isn't as big or noticeable as yours. Sounds like you will need to do massage quite often. But at least you know right where to do it!!! You seem to have figured out what helps best for it, so that is good. [ more ]
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J-Pouch ForumsHelp! Need advice now!
How many undies to bring to hospital?
BenBBenB
Mysticobra I didn't take underwear except to wear home. I was in 4 times. 11 days was my shortest. I did take ear plugs. Asked for extra pillows. And found the thermostat for my room. Because they kept it cold in there. (I was so happy when I found that!) Richard [ more ]
Winterberry Hello, Ben. Flattering gowns and robes are supplied by the hospital and are changed by the care team as many times as you need because soiling will be frequent and normal. If you do wear underwear remember you'll need to pull them on and off many times to use the washroom urgently, or when your doctor and residents or nurses make their rounds and need to examine you. Your midsection might be very tender and sore so maybe the less fumbling the better? The items I found absolutely essential... [ more ]
BenB I'll pack around 10 pairs then, few pairs of shorts, t-shirts etc.. Heard lots of good things about St Marks, I'm having my surgery at Southend Hospital, I presume all the hospitals work similarly so hopefully they will provide some disposable clothing. First surgery I was in 3 days, second 6, 10 is going to be unbearable but I guess it has to be done. I'm debating on whether or not to take a laptop. I'm very alert and wake up easily at any noise but with so many people in and out, just... [ more ]
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J-Pouch ForumsGeneral Discussion
Supplementation
NativeNative
skn69 I've had my pouch for almost 39yrs... At first, I juiced (rare back in the 70's) then started on supplements. I then moved to a 'dissociated diet' where I eat my fruits in the mornings along with drinking fluids (coffee, water, juice) and then have 2 protein or carb meals/day...depends on if I want to lose weight (2xs protein meals), gain weight (2xs carb meals) or stabilize (one of each)...this has allowed my system to digest foods better, absorb better and become more efficient. Less... [ more ]
valli I am pretty new to this so I just take multivitamins, vitamins D, and probiotics. Good luck with your J pouch surgery. Didn't know they could do it years later. [ more ]
Gil I take a multivitamin, calcium with D, and potassium, which I take due to diet limitations. I’ve had pouchitis since my reversal in 2010, so my day to day life is similar if a little worse than it was when I had UC. I’ve worked on managing my disease, my meds and my doctors for many years. Some days are awful, others good. I’m retired now and can’t imagine how I coped while working. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
hysterectomy and a j-pouch
ksrksr
ksr Here is my problem...I have had a jpouch for 16 years. In January, I had a "rude awakening" when I got out of the bathtub. I went to the ER because I thought my small intestine was coming out. The ER doctor told me I have a bladder prolapse. He did not look at my uterus or rectum. I followed up with my family doctor looked and said I have a bladder, uterus and rectal prolapse. I then followed up with my urogyno and he checked me and said I just have the beginning of a bladder prolapse and do... [ more ]
CJB Hi, after 20 years with my pouch I was diagnosed with ovarian cancer almost 2 years ago. So I’ve done chemotherapy and had a hysterectomy 18 months ago. Besides the chemo, which was hell for my pouch, I actually think the hysterectomy has made my pouch happier. Not sure why, but I feel like I have a lot less urgency when it’s full. Maybe I have more room? In any case, the hysterectomy hasn’t adversely affected my pouch. My hysterectomy was done robotically and everything was removed through... [ more ]
Susan Gilbert Hi, I got my J-ouch in 1995 and had a hysterectomy in 2010. Only problem was post-op. Gas pains and slow bowel wake up were worse than the surgery. Had to be split wide open again for the hysterectomy. I would love to hear others' stories. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction?
M Mammat
Susan Gilbert I have discovered myofascial release. After ending up in the ER once a year for four years. I urge you all to find a therapist; Mine is a healer and she has given me techniques to do myself. I have been able to get things moving. Go to myofascialrelease.com to the directory to find a therapist. My colorectal surgeon tole me that some yoga positions, acupuncture, and belly massage have been known to help. It took me three years to figure out that he meant myofascial release for the belly... [ more ]
Mammat It passed after several hours. Thanks for your reply. It helps to know there are others out there who understand. I drank a lot of grape juice, and wam liquids, used a heating pad, moved as I could. Moving was hard because if the pain and the leakage, though. [ more ]
Winterberry Hi, Mammat. Has your blockage passed? Try to keep moving and walking, if it doesn't hurt too much, so that it can work itself out. Water or warm tea to keep hydrated, unless you are vomiting. I had a small blockage once, similar to your symptoms, from eating a big salad with raw carrots. Luckily it passed after 12 hours or so. I hope yours does too. Are you vomiting? [ more ]
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J-Pouch ForumsGeneral Discussion
Hysterectomy recommended with Pouch removal ?
SaffSaff
Saff Ok thanks for sharing your experience Jody, that wasnt something I had on my radar at all! [ more ]
Jody This reply may come a little late, but my story may help with your decision if you haven’t already made it. After all of my surgeries, my uterus literally fell. I was told that some of the connective tissue that attached my colon also held my uterus. Inevitably my gynecologist suggested I have my uterus removed because I was no longer using it, and it dropping was causing me issues. I did keep my ovaries however. [ more ]
Saff HI Mchi, sorry for my late reply - I only just saw you had responded. This is really useful advice. Yes I think am coming around to doing it all at once - I have a number of gynae issues which are possible causes for ongoing pelvic pain - so now I am just getting familiar with the options around hysterectomy. So much to process for these big surgeries. [ more ]
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J-Pouch ForumsK-Pouch Korner
Exercise Restrictions
C Chute
skn69 I've got a k pouch that has had more revisions than I can remember...hernias (4-6), peristomal hernias (3), falling off of the wall (3xs +)...the list goes on...not to mention all of the valve problems. So, do I do abs? Yes...core exercises, pilates, yoga...the whole 9 yards. But, I have learned that I need to allow my body to heal completely first, to not think that I am superwoman, that I can lift, bend, yank, stretch etc like before...I need help until I don't and I need to remember that... [ more ]
Arlene B66 I do yoga, use to jog, now walk fast, use weights, swim, etc. And I have had a K pouch since 1979. [ more ]
Arlene B66 ❤️
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J-Pouch ForumsHelp! Need advice now!
Living in apartment shared with roommates
F fapnewbie
Jody 14 years after takedown, I will not use a public bathroom if anyone else is in the bathroom because of the atrociously loud gas explosion noises that come out of me when I poop. I don’t use any bathroom at home or at someone else’s home if people are in close proximity to the bathroom because I’m totally embarrassed of the gas! My husband thinks I’m crazy to care what others hear, but I can’t help myself. If it’s just my husband and kids, I’m okay letting the gas rip, but not with anyone... [ more ]
colitisman34 Hi FAPNEWBIE, So I underwent the first step of 2 surgery in 2006. The recovery after coming home from the hospital is very hard. There is a lot of gas pain and bloating and you may even need morphine. During this time bag output will be very watery and you will have to empty frequently. So if your two roomates are friends and very supportive and realize that you will tie up the bathroom a lot, then I think it's ok. If you have the extra money to move into a bigger place with your own... [ more ]
skn69 Just a little footnote... I have a lot of senior-citizens-in-laws...hubby's family is large and all over 80. We had a family dinner the other night and once they left hubby took me into the bathroom to see the mess on the toilet seat and accused me of leaving a dirty seat behind for his siblings to find...(horror of horrors!) I laughed. I cried...I couldn't stop laughing. I asked him in what parallel world did he think that my butt could leave skid marks on a toilet seat! I reminded him that... [ more ]
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J-Pouch ForumsGeneral Discussion
Gut Noises
J jombee1
Scott F Nope. I did have a very loud bowel noise during a job interview once, and once the interviewer recovered he pretended not to have heard it. If someone asked me either of those questions I might just answer “yes.” [ more ]
colitisman34 Guess your coworkers never asked you during a meeting if you were going to explode or "what did you swallow a tiger"? [ more ]
Scott F My belly used to gurgle loudly, though it doesn’t usually do it any more. It never occurred to me to make significant life changes over it. Heck, it never occurred to me to make any changes at all. [ more ]
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J-Pouch ForumsGeneral Discussion
headaches from dehydration maybe
B Bubba1028
Winterberry Keep a mug on your bathroom sink. Everytime you use the toilet, fill the mug at the sink and drink. You lose fluid with every bathroom use so it's a good time to rehydrate. Also keep a bottle of water on your bedside table and drink if you wake up in the night. This could help prevent morning headaches. [ more ]
CTBarrister Bubba if you implement good hydration diet for a week don’t drink alcohol or coffee/caffeine which will dehydrate you. You should be drinking enough to do the pee test suggested by Scott and if you aren’t peeing enough to do it probably suggests that dehydration could be an issue even if it isn’t causing headaches. [ more ]
jeane I have this issue often. it’s always when I have not been drinking enough fluids. I will wake with headaches when this is occurring. Drinking enough daily water usually solves it but it is a hassle i agree. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help for chronic dry nose.
J jeane
jeane Thank you. I will try the suggestions ! [ more ]
Scott F A saline gel (like the Ayr brand) is specifically designed for dry, crusty noses. [ more ]
RHolt Hello Jeane-- I think it definitely could be due to chronic dehydration, but also some people are just dryer than others. Of course, menopause doesn't help matters, either! The sprays help a little, but honestly, I just put vaseline up my nostrils before bedtime or during airline flights to prevent the dryness that can happen in those environments. Bedtime is hard because of forced air heat and the fact that we are breathing through or noses (most of us, anyway!). Airplanes are a complete... [ more ]
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J-Pouch ForumsHelp! Need advice now!
To push or not to push?
F FelixGust
RHolt FelixGust, I am 7 years out from my J-pouch surgery and I still have good days and bad days. I seem to have avoided chronic pouchitis, but I have learned to live with feeling like I need to use the toilet more than I actually allow myself to go. (Most of the time, it is gas--that seems to be the real enemy to a J-pouch, aside from pouchitis). I really don't count how often I go, but it is probably 6-9 times a day, including the middle of the night or early morning. I use Calmoseptine after... [ more ]
FelixGust Thanks LJZ, its great to hear from you. Im having some better days and some not so good.I imagine that this is common in the beginning and I'll slowly work out what to do. I bought some hand held water spritzers but they had no instructions? I'm assuming you just spray them externally to clean yourself? I almost got the idea that you were using them internally to help the bowel to relax or am I totally making that up? Sorry, totally new to the idea of using wster in any way. [ more ]
Ljz Sounds like you’re early in the healing/ adjusting process so I’d recommend to avoid straining as much as possible. With time you’ll figure out balance of solids, liquids, immodiom, etc. to get stool to right consistency to avoid both uncontrollable output and straining. I’d also be careful holding it too long. As far as how I find ways to reduce the strain and to more completely evacuate the pouch is using squirt bottles with very warm, almost hot water. I often use 2-3 refills, but in the... [ more ]
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J-Pouch ForumsOstomy & Skin
Loop to End Ileostomy
Tara GTara G
LHetti Hi Tara! I too had a better recovery from my pouch excision than the original colectomy surgery, but even so, this was a big surgery and recovery. My pouch excision was not laparoscopic, so it was a full 8 weeks recovery in my case. I was pretty much good at 6 weeks, but I gave myself the full 8 so I was sure to be 100%. My abdominal scar took almost 6 weeks to stop oozing . I was on prescription pain pills for 4 weeks, so no driving. Yes, my barbie butt hurt and I pretty much only sat... [ more ]
TE Marie Tara, I think the permanent ileo is light years better than my temp one was. I just saw this so am wondering if you have proceeded with the surgery or not. I had a much better recovery from the removal surgery than from the colonectomy/j-pouch creation surgery. [ more ]
Tara G thanks Rachel - I love my ostomy, totally ready for it to be permanent...not sure why this surgery of all of them is freaking me out so much. I guess I'm having a hard time imagining the recovery being easy - i.e., how can it heal when you're sitting on it, etc.....so thanks for your response, I appreciate it. [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for surgeon in nj
M Momma
Momma OMG so sorry to hear that you’re going through all of this. I hope you have support from other family and friends. I do way too much for him. But I feel helpless otherwise so I don’t mind doing what I little I can. My husband does have my back and supports me. He had his surgery today and is back to an ostomy for now. We will take one day at a time and focus on healing and eating and getting stronger. I hope that the situation improves for you. I will reach out to you once everything settles... [ more ]
Jeffsmom Do him a favor and don’t allow it. My son did the the same to me. He vents all sorts of nastyness to me, and my husband allows it. My husbands first reaction is to look at me and tell me “What did you do”. Don’t let him guilt you into doing everything for him. Hold him accountable for his behavior. I speak from knowledge. Because my husband always defended my son’s behavior and ALWAYS took his side, my kid is now so verbally abusive to me that I Am not safe in my own home. I’m only saying... [ more ]
Momma I am the only one that my son feels comfortable venting to and I take the full brunt of his anger and frustration. He also takes advantage of my willingness help. My husband tells me I do too much for him. But I feel so helpless that I do whatever I can to help him. [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl and alcohol
clz81clz81
Maxx Just my 2 cents: I drink flat coke next morning if I feel lousy from last night drinking and somehow it worked quite a few times. Found this on google and works on me! [ more ]
CTBarrister I seem to be very resistant to side effects and drug interactions generally, with some exceptions. I have developed yeast infections while on antibiotics (and warts), and I am very sensitive to Imodium and require an extremely minimal amount for it to do it’s job. But with alcohol I never had a problem mixing it with cipro and flagyl. I even remember one year forgetting it could be a possible issue, and getting bombed drunk while in Montreal for the Jazz Festival. And had no issues at all. [ more ]
clz81 Yeah, I did lots of reading last night about people's reactions while I was sitting there freaking out. Sounds like some people react so horribly to even the tiniest bit of alcohol with severe vomiting, some have more moderate to mild nausea and feel very warm or flu-like, and some have no issues at all! Good to hear that it doesn't bother you. I rarely drink so it's never been a big deal before to me to even worry about. [ more ]
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J-Pouch ForumsGeneral Discussion
can chronic pouchitis cause psych issues?
pouchingtonpouchington
Saff This study has low numbers but may be of interest to people.. https://www.ncbi.nlm.nih.gov/pubmed/21683306 [ more ]
Spooky Any long term chronic physical illness can take a toll on mental health. I know. I have battled periods of anxiety and depression in the years after my emergency surgery. I think the mental health aspect of living with IBD is often overlooked. You are definitely not alone in this. Though I am doing well currently, in the past I have been in therapy, with mixed results. The first therapist I saw was not very knowledgeable about IBD and although she did try to educate herself, I felt she... [ more ]
jeane I agree with all of the above. I now have depression from the multiple debilitating issues I have been dealing with for awhile, one of them being chronic pitchouts and the other being on Cipro regularly. My dad was on Cipro for several months before he passed away and had some pretty significant psychiatric changes while on it such as depression,, anxiety and agitation. . I never saw him behave as he did in all my life while he was taking the drug. He was like a different person. He was... [ more ]
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J-Pouch ForumsGeneral Discussion
4 months past surgery - a few problems.
N Nicolajs
New pouchie Nicolajs, you history is EXACTLY the same as mine! I am also 4 months post op as well! [ more ]
Nicolajs Thank you guys for your answers, it's really helpfull. I went to my surgeon and he took a look inside the pouch and everything looked fine. He told me that as long as the bleeding was just a tiny bit on the paper, i shouldnt be worried but if it gets worse I should contact him again. Often it's just a tiny bit on the paper, but every once in a while there is also some blood in the toilet. Hopefully it's not pouchitis beginning. It's now a few weeks since i stopped taking the antibiotics, and... [ more ]
lholdem I felt like it took me a good year or so to get things kind of “normal” - I think the full healing process takes longer than we think. Plus there was the added challenge of finding a new normal with how your pouch operates. I highly recommend doing the FODMAP elimination diet - it really helped me in discovering what foods made me feel gassy and terrible. And in general try to baby that new pouch- mine does sooo much better for me when I’m taking care of my body. It lets me know really quick... [ more ]
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J-Pouch ForumsGeneral Discussion
Handling other illness after surgery
AllyKatAllyKat
JanW2 Thank you Sharon I am not on Facebook, but will get on as I am really excited and interested in connecting with other Kpouchers! Have followed this forum since 2006 without comments till now. Have appreciated everyones help. Janice [ more ]
skn69 an, I am one of the oldies on this site...I have had my k pouch in one form or another since 1979 after a very long and painful journey since birth. I faced it all with courage and stoicism until I couldn't. No one had told me about the colon/brain connection and that fact that our colons produce something that helps us keep calm? Stable? Emotionally balance? Who would have guessed? (thanks for reminding me TE Marie). It explains a lot... If you wish to talk with k pouchers, share and ask... [ more ]
JanW2 Happy Easter to all! After reading all of your thoughts so far, I’m feeling less alone! I’ve had 2 j pouches and 8 months ago received the Kpouch. I’m not a candidate for an ostomy anymore . So many things have happened that all it takes is the thought of a blood draw, which is quite an ordeal for me, to make me feel like I’d rather just die. Medications must be crushed or liquids so not always available... I get really depressed and easily aggravated with how life is now, afraid of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis Symptoms or Something Else?
D DeathStalker
Scott F If it’s ordinary pouchitis (and it might be), then Levaquin may help within a day or two. If it’s C. diff, though, Levaquin is a very poor choice. Is that what you meant by “CD?” “CD” most often means “Crohn’s Disease” in this forum. Has your stool been tested for C. diff? The strong smell is sometimes a sign of C. diff. The joint pains aren’t very helpful, I think, in figuring this out. And lots of us have unsettled GI tracts for some weeks after a viral infection. [ more ]
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J-Pouch ForumsGeneral Discussion
I think I have Crohns
A AARON
CTBarrister Well that explains it. You probably do have Crohn’s (that’s my operative diagnosis as well) but your main concern should be finding a proper treatment that works. Entyvio will hopefully be more effective than Remicade and Humira. [ more ]
AARON It is also not SIBO. I was already tested. [ more ]
AARON I have ulcers in multiple places. As far as the duodenum. So I really wouldn't think that could be caused by backwash ileitis. The reason I got the surgeries was because remicade and Humira failed. Can't go on them. That leaves Entyvio. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Humira with j pouch
R RLC
MJL Thanks Scott! Will research surgery and docs who do this. [ more ]
Scott F I’ve been fortunate to have avoided cuffitis. When medical treatment of cuffitis fails then sometimes surgery is a reasonable choice. Pouch advancement surgery removes the remaining rectal cuff, which is the troublesome centimeter or so of UC-prone tissue still present with most J-pouches. The pouch is then advanced to the anal canal and they are hand-sewn together. Generally a mucosectomy (scraping off of the mucosa) is also done, to further reduce the risk of UC symptoms. This is a very... [ more ]
MJL I don't know what pouch advancement is. Will Google. Did you have this done? Did it help? I feel like having this surgery was the biggest mistake ever made [ more ]
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J-Pouch ForumsGeneral Discussion
What to do? Pouch redo or permanent ileostomy
B Blowe
BillV You may want to look up Dr. Zane Cohen in Toronto for a second opinion. I do not know to what extent he is still in practice, but he might recommend a doctor in Canada who could help you. In the event that a pouch redo is not an option, there are two procedures that do not require an external bag: the K pouch and the BCIR. There is a lot of information about them on the internet. The button hole size stoma is placed lower than that for a conventional ileostomy and is covered with a small... [ more ]
Scott F I think you ought to get a qualified opinion to inform your choice. Dr. Remzi is certainly qualified, and perhaps you can plan to make a trip to New York a delight instead of a burden. Broadway show? Museums? Dr. Remzi might even know of a qualified surgeon in Canada for you - perhaps someone he’s taught. Also: a permanent ileostomy generally works much better than a loop ileoostomy, but it will look pretty much the same to other people who see it. Someone actually worth spending your life... [ more ]
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J-Pouch ForumsGeneral Discussion
Just Checking In, fellow j-pouchers :)
ElmerFuddElmerFudd
skn69 Hi Steve, What wonderful news...on all fronts...how wonderful for your daughter that she has found a safe environment to feel free and be herself. It is essential for her healthy development. I come and go on the site but mostly I try to pop in on a regular basis to see what everyone is doing and how I can help (if possible). Things are stable here, pouch-wise... I try hard to maintain some sort of balance in my life, both food and exercise but I have had 2 broken arms (1 is healing the... [ more ]
ElmerFudd Wow - this thread is great guys! Thanks for stopping in and updating everyone. Glad to hear from you all, and glad (overall) things are going well for so many! Steve [ more ]
J moons ❤️
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J-Pouch ForumsPouchitis
New to j pouch life- what does pouchitis feel like?/
M MaryMomof3
Darrin I have had j-pouch for 23 years now. Had UC for 10 years prior to that. Pouchitis was not part of my life until about 13 years into my J-pouch. Yes, I watch what I eat at times, but when feeling better always dip into foods I should avoid. I wanted to respond to the pouchitis comments, as cipro used to work great for me, however, over time it stopped working and required use of a second antibiotic like flagyl or another to be used. A few summers ago I got severely dehydrated and ended up in... [ more ]
Winterberry That is great news so soon after takedown! I hope it continues for you. The antibiotics will take care of inflammation and improve the formation of stools very quickly, making them a bit more solid. Good luck. [ more ]
Dam uc Had my take down surgery 7weeksago today had all the surgery in 10 months bean a hard road to travel was maxed only having to go to loo 6 times in twenty four hours few days after coming home things got really good forming still was on Codie’s for pain got down to three loo trips but last 2 weeks things changed seen surgeon today gave me antibiotics for inflammation in my pouch couldn’t believe my luck how well things were going [ more ]
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J-Pouch ForumsGeneral Discussion
Percocet in my bag found whole?
vallivalli
Lew I have a pouch and I have learned to bite my pills to avoid them showing up in the toilet! One of the pills I take I bite several times to make sure I get all the benefit from the med - it tastes bloody awful but guess that’s the price I pay! (Often wonder how long they were going through me before I noticed, LOL)! [ more ]
CTB23 I had a fish oil pill show up in my bag when I had the temporary ostomy. Now I chew gummies. [ more ]
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J-Pouch ForumsHelp! Need advice now!
havea small blood in mucus after second step of j pouch
P PS2018
CTB23 Actually I remember having after the first step, and I believe after the second. It was 8 weeks between my second and third steps. How long before your takedown? Also, if you have a concern about it, check with your surgeon. That's what I did. [ more ]
PS2018 Hi thanks for your help, did you have it with after second step too with mucus ? [ more ]
CTB23 I had the same thing. It was a nuisance, but was not a problem. Had my third step and went away. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Are there any natural replacements for Mesalamine (Lialda)?
Oozie55Oozie55
Jan Dollar That is where the experience and skill of the clinician comes in. You cannot just go by the microscopic inflammation noted on the pathology reports (which we all have). Jan [ more ]
Scott F Thanks, Jan! I must have skimmed past that when I read the article. Since most pouches exhibit some inflammation, at least on biopsy, I do wonder what the right threshold of inflammation might be to warrant treatment. [ more ]
Jan Dollar Scott, It took a bit of searching, but I found this passage in the article “Pouchitis: What Every Gastroenterologist Needs to Know” (under the section Prospective View and Recommendations). https://www.ncbi.nlm.nih.gov/pubmed/23602818 ”Patients with minimal symptoms but with endoscopic inflammation still should be treated to minimize smoldering inflammation causing chronic “stiff” pouch with transmural inflammation, which can result in pouch failure.” While it seems like speculation, it is... [ more ]
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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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