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J-Pouch ForumsGeneral Discussion
Pouchoscopy frequency
Jan DollarJan Dollar
Kushami ❤️
Jan Dollar My doc goes up into the terminal ileum too, but not that far. But you are right, if there is a lot of inflammation, there is more discomfort. I have my share of scopes with pouchitis. Jan [ more ]
Bubba1028 I think my doc suggested one every other year unless something came up that he was concerned about. I chose sedation bc I had inflammation and thought it was going to be painful and, well why not 😉 In my case, since I was sedated, he was able to go higher up in the small intestine to check out some kinks that were causing me problems from previous obstructions. So it was helpful, in that sense, to “map” it out higher up. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch vs Permanent Ileostomy
P pzzzzs
Sara14 ❤️
Way2go I had an inflamed large intestine and underwent emergency surgery to remove it in 1980 at age 24. After several diagnoses, the doctors finally settled on a severe infection of my colon. The official term was a subtotal colectomy. I ended up almost dying in the hospital, but survived with an ileostomy for 11 years. The stoma was placed directly in a fold of my abdomen, which caused lots of complications with leakage and skin eruptions during that time. I was teaching high school math, so I... [ more ]
Former Member I’m pleased I’ve been able to assist you and provide a positive aspect to J pouch surgery. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Shocked! at the cost of Medication
Y ytcrockpot
Mysticobra When I was taking humira. It was $1700 per shot. Two in a box. Remicade. When I was taking it was $7000 per infusion. I had insurance and had to pay the majot medical deduction. Humira is up to almost $4000 per shot now. I don't use any of it anymore. But you can look up cost of biological meds. Now you know why and how they pay for all these wonderful commercials you see on TV. P. S. Humira never worked. But I tried it for a long time along with another injectable after. Remicade worked... [ more ]
Sara14 Stelara has a good safety profile compared to the other biologics. Sorry your insurance doesnt qualify for the program. If it makes you feel better, it has done absolutely nothing to help my UC. [ more ]
ytcrockpot Thanks for your advice Jan, I really do appreciate it 😊 [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
New J Pouch
J Juliana
Former Member First of all congratulations! At you stage I was going 40x a day. Since I did not have a choice, I just coped with it and made sure I was near the restroom all the time. Whenever I went out, I always knew where the restrooms were. After a few months, things started slowing down to 14-20, almost 7 years later is 14-20 still. What has helped is accepting reality and accepting the things I cannot change, when I started doing that, everything came together and I manage everything more better... [ more ]
Jaydog I would say around the 2 or 3 month mark is where I started to get things figured out. I'm about 6 months out from my takedown and I workout hard just about every day. Today I ran 3 miles, jumped rope, did burpees and jumping jacks then sat in the sauna. I can eat pretty much anything I want although for the most part I eat very clean with lots of probiotic rich foods like organic Greek yogurt, organic cottage cheese, kombucha, and some other stuff like that. I sleep all through the night... [ more ]
Ryan138 I don’t have easy access to the bathroom for my work…it took 3 months post takedown till I was thrown to the wolves…I was nervous at first but I have made some adjustments to my food intake and timing….been back to work for 7+ months now..i have managed pretty well, not everyday is perfect but give it time you will be fine.. [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Leakage
PO Pressing On
Former Member I would send a private message to both skn69 or marz , I believe they have the system as you and they may be able to tell you more info about your concerns. I would copy and paste the same message to both. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Need to calm my nerves
B BK 123
BK 123 Thank you for the words of encouragement Kmiller! Got the results of my CT Scan back - nothing major with the pouch, but as suspected there's pouchitis milling about. I've been put on flagyl for six weeks and I'm almost already a week in and have been controlling the urgency better - last night I only got up twice to use the restroom. My surgeon did mention the possibility of incorporating Remicade into my treatment, but wanted me to speak with my GI doctor. If it comes to that, it is what... [ more ]
Kmiller I'm at 15 months from take down and my first year was a little rough. I had a few bouts of pouchitis and also cuffitis. So early or not, it could be pouchitis. It's gotten much better overall, although this week has been a rough one and I'm on flagyl. I had a CT scan at one point early on like you. All was ok. Cuffitis was found 7 months after takedown with a scope. My point here is everyone is different and you can have issues that antibiotics will help soon after takedown. I don't tell you... [ more ]
Former Member Your welcome dear, try not to drink, drinking is not good for us. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
food
kelseykelsey
kelsey you can eat tomatoes but not tomato sauce? i read tomatoes can be tough bc of their skin, high acidity and pectin. i eat cheese pizza yes!! that’s how i describe it to anyone and everyone (no one in my life has ever heard of this, neither had i before last july). the only non-puréed veggies i’ve tried are cooked spinach and sweet potatoes. my one year old nephew has a more varied diet than me 😂 [ more ]
Chook2 I'm six months out and I mostly eat homemade burgers with fish,chicken or meat with tomatoes and lettuce for dinner but I think that's just my choice.tomato sauce is not good.I can eat anything but moderation is the key.I think having a jpouch is like being a baby again as mushy food or food that you could feed a small child are best. [ more ]
Former Member I understand. Convatec sensi skin barrier cream bothered me, itching!!!! [ more ]
See all 10 replies...
J-Pouch ForumsK-Pouch Korner
ties solution
MS michael s
Kushami Sorry, it seems like the clinical trials planned are on hold due to you know what. Sigh. (I thought the people might have already gotten the implants.) [ more ]
Kushami If anyone is interested, there seems to have been some progress, with small trials running in several countries: https://ostomycure.com (Yes, it's a terrible company name.) The drawcard for me would not be the cap, which I probably wouldn't bother with, but the fact that you don't have to use adhesives on your skin. That would change the ileostomy option from unbearable to pretty okay for me! It can be fitted (implanted?) to new or existing ileostomies. [ more ]
michael s thank you,I will keep searching [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Hair Care Tips :)
FM Former Member
Former Member I started taking Biotin about a week ago, feels and going great!!! [ more ]
Former Member I am glad to hear that!!! Its crazy how hair ties ruin our hair and even takes it out, pretty scary!!! I am glad to be using scrunchies full-time now Too bad I found out about it recently, Better Late Than Never though lol [ more ]
roseviolet Switched to scrunchies a long time ago. They're terrific. [ more ]
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J-Pouch ForumsPouchitis
Cipro - long term side effects
A Adam21
CTBarrister I said I had warts on my groin area which is a large area. I did not say I had warts on my genitals, but if I did, so what? Your posts are total nonsense and frankly you should not even be in this thread because you are hijacking and not helping- which is par for the course on your history here, which is a history of nonsense posting. How about reading what you are responding to and maybe looking at wikipedia if you do not know what is under discussion? And if I had an STD you would be the... [ more ]
Former Member You said you had warts on your genitals, its common to naturally assume STD. And I said I misread your comment. You need to stop being so mean. [ more ]
CTBarrister Your posts were disrespectful. Go re-read what I posted, I did not "put them together". I said that I had both at the same time, and I said exactly why, and that does not mean warts are caused by fungi or that a yeast infection is caused by viruses. You know that, and you are just posting nonsense as an agenda to try to make people who actually know something about these issues look like they are talking about something else. You posted nonsense on a subject you know nothing about, for no... [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Veggies and Arthritis
L LizAdair
Former Member Love the layout you did haha! Creative And okay sounds great!!! Drink before, during, and after every meal and move around as well [ more ]
LizAdair Thanks, guys! Lots of things to think about now. @Former Member I hadn't considered my water intake being important for digestion of fiber, but of course that does make sense. I could be more hydrated, so I will try working on that. @Jan Dollar Oddly enough, I really don't seem to have any issues with most carbs. But I 100% do notice that I do not digest tomatoes and peppers very well (which are in the nightshade family, right?) I have also noticed that overly fried/greasy foods and large... [ more ]
Scott F Hi, @LizAdair . This connection between salads and arthritis seems very unusual. Most people who discuss their ability to tolerate veggies are focused on bowel function and bathroom activity, and that advice isn’t really what you’re asking about. I’d be surprised if it’s really the fiber itself. Jan’s point that vegetables in the nightshade family can be problematic offers a strategy you might try: a vegetable-specific elimination diet. In your case you could test the hypothesis that this is... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Surgical site discharge after takedown
N New577
Former Member Diaper rash cream- calmoseptine. The hospital should have diaper rash cream, Convatec Skin barrier cream, they should have that, ask the ostomy nurse. [ more ]
Poucher21 Wow I just read all of these events!!!! I’m so sorry your dealing with all of this on top of a new j pouch!!!! Here to jpouch 2.0, you got this!!! Are you able to soak in a low bath below your incisions sites for your bottom?! This always seems to help me with the burning. [ more ]
Sara14 ❤️
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J-Pouch ForumsHelp! Need advice now!
Afternoon urgency
P Poucher21
Former Member Everything sounds normal but I would not recommend to hold it, I say go when you need to. [ more ]
Kmiller @Poucher21 I'm sure everyone hears different things but my surgeon told me that at 2 years I will have a good idea how my pouch will be. I'm at 15 months post takedown and for me the 1 year mark showed some significant improvement, it sort of clicked. Still not perfect! I'm doing pelvic floor therapy now and I love it because I am learning exercises to help me but also just learning a lot about my body and how and why it works the way it does. [ more ]
Sara14 ❤️
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
SIBO??
JA Joey A
beverly I started the FODMAP diet 3weeks ago and so far it is amazing. After 6 years I am learning what is causing the problems. So thankful I finally tried this plan! [ more ]
Former Member How many bms are you having??? I would definitely recommend shopping around for Gastros. I would do probiotics at this point. I would try Align, I hear good reviews about that probiotic. [ more ]
Joey A Thanks very. much! [ more ]
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J-Pouch ForumsGeneral Discussion
How much straining is too much
P Pouch2021
WellOne This is how my early days felt, so I can relate. Eventually you get to feel your own body's "flow" and, yes, baring down is still a part of toileting for me. When my output is super watery no need to strain. When it's not as watery and I know i have gas bubbles that need to come out, I allow myself to strain a bit more. I know though when I'm having a flare up and it's time to sh*t or get off the pot, lol. It's a journey. Hang in there!! [ more ]
Jan Dollar Yeah, it is a bit of a learning curve. When your rectum was removed, along with it came the muscles that automatically contract during evacuation. The small bowel has musculature that propels its contents forward. But, when it comes to the pouch that does not exist. This is because half of it contracts one direction and the other half contracts the opposite way. So, you have gravity, pressure, and time. This is why thick stool is not a good thing. Rather than getting into laxatives, you are... [ more ]
Sara14 ❤️
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Diastasis Recti
GaylaGayla
Olina Need a gastroenterologist familiar with the j-pouch near Greensboro North Carolina [ more ]
Former Member Your welcome! Maybe seeing a pain specialist might help? [ more ]
Scott F @Gayla A decision about surgery ought to include the severity of the problem and also the likelihood that the surgery will correct the problem. Have you gotten an MRI yet? Without that (plus a neurosurgical consultation) speculation about surgery won’t help much. [ more ]
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J-Pouch ForumsPouchitis
MRI
K katenet
Jan Dollar Well, blaming the shape of your teeth is not the same as blaming you. The crush forces in chewing are enormous, and your bite factors in greatly. Blaming you would be suggesting you should not eat so many jawbreakers or open beer bottles with your teeth! In any event, you got more than the expected lifespan of those fillings. Unfortunately, the newer composite porcelain type fillings may not last as long. Metal has better “give” and shock absorption. It just is not as attractive. Jan [ more ]
CTBarrister Over the past 3-4 years I have had to replace quite a number of fillings that fell out of my teeth, including a very substantial one very recently. Most of these fillings were anywhere from 20 to 35 years old. The one that most recently fell out was on my upper right wisdom tooth and it was a nightmarish procedure during which my jaw muscles got severely sore from having to crack my mouth open wide enough for 1.5 hours while my dentist replaced the awkwardly located filling. It sucked,... [ more ]
Former Member ❤️
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Doctor recommendation in Indianapolis familiar with j-pouch
I IndyVince
Olina Lots of replies. I need a gastroenterologist recommendation for North Carolina,perhaps near Greensboro familiar with the j-pouch. [ more ]
Sara14 Who did you end up seeing? I'm also in Indiana. I saw Dr. Robb for a consult once and it was a very bad experience. He was extremely rude, as was his staff. I would never go to him again. [ more ]
Sara14 ❤️
See all 9 replies...
J-Pouch ForumsPouchitis
Empiric treatment, abx duration
P Pouch2021
Former Member I am sorry you are going through this. Definitely continue treatment, at least if that does not work, at least you can try biologics. [ more ]
Scott F I'd take the full 14-day course. The best thing to do with acute pouchitis is get rid of it and look at it through the rear view mirror, and not create a scenario in which you can't tell inadequately treated acute pouchitis from chronic pouchitis. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Probiotics on antibiotics
P Pouch2021
Former Member Definitely space it out at least 2 hours. [ more ]
Scott F You might be able to get your insurance company to cover the prescription strength. I was successful, albeit after a year-long fight. [ more ]
Pouch2021 Thanks, Scott. I think I’ll start the visbiome back up and separate it from abx. You’ve had a long history of taking both abx and an equivalent probiotic so good to hear from you. I guess it can’t hurt other than my wallet. Also, I don’t expect to feel any different on the probiotic and honestly the data is all over the place on efficacy. But I did find a reasonably well controlled study that showed delay to first bout of pouchitis (maybe a moot point for me considering only 4 weeks out take... [ more ]
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J-Pouch ForumsGeneral Discussion
Low carb/sugar
P Pouch2021
Former Member I am vegetarian and I stick with 60 carbs most of the time. [ more ]
Scott F I’m not particularly recommending a very low carb diet, but that’s the dietary intervention that seems to sometimes keep pouchitis at bay. It’s not really the same as diabetic ketoacidosis (it’s just ketosis), but you shouldn’t do it if it seems like a bad idea to you. Making special exceptions for favored carbs is unlikely to achieve the intended result. [ more ]
Pouch2021 We absolutely all need carbs in our diets. Glucose is the first and most efficiently utilized source of energy in our body. You can cut out carbs and force your body into fat metabolism (the basis for Atkins diets, etc) but utilizing ketone bodies as an energy source comes with its own costs. Protein will be the last energy source for obvious reasons (you need muscle to do things like sustain your heart beat! With those ketogenic diets you need to eat a lot more fat which increases LDL... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Prolapse and possible parastomal hernia
F Fredz
Former Member I never knew a stoma could prolapse!! I learned something new today. Have you told everything to your doctors??? [ more ]
Scott F I don’t think this is likely to affect your subsequent surgeries, but I hope you’ve discussed it with your surgeon. They might (for example) suggest doing the second surgery a bit sooner, or they may have some other guidance. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Gas or inflammation?
B Brellis
Former Member How long have you had your pouch? And when was your last pouchoscopy? [ more ]
Scott F I also associate pouchitis with that sensation of constant fullness. Have you ever had pouchitis diagnosed? Have you ever tried a course of antibiotics? [ more ]
Jan Dollar When I have pouchitis I get a sensation of incomplete emptying. I think that is what you are describing. It is from the inflammation and spasms associated with it. Of course, I also have increased frequency too. With gas, you would be getting more crampy pain associated with the distention of the bowel. Jan [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Hyperbaric Oxygen Therapy
J juliemk3
katenet I did mine at Houston Methodist and it was the same individual with the tv I just had a really hard time my pressure in the tube was 2.0 very disoriented for awhile afterwards [ more ]
Susan L Kate, I had treatment at Retreat Hospital in Virginia. Yes, I was in the individual tube. There are 2 in the room and you each have your own tv. I watch rom coms and do my pelvic floor therapy exercises. Where did you do your hbo sessions? [ more ]
katenet Susan where did you have treatment? Were you in an individual tube? [ more ]
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J-Pouch ForumsGeneral Discussion
Diameter of anal anastomosis
P Pouch2021
Former Member Your welcome [ more ]
Jan Dollar Yeesh! So much to sort out and still having to wait and see what is next. But, unfortunately we just don’t get to choose our outcomes. At least you have somewhere to go and gripe where people know what you are dealing with. We can’t make things turn around for you, but we understand. Be the squeaky wheel until you get your answers! Jan [ more ]
Sara14 ❤️
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Trouble emptying Jpouch
DK Doug K
Jaydog Ya like I said in my experience I had tons of little issues. I would post on here and ask for advice and before I could read the responses my issues would go away and I'd have some type of new issue. If I remember correctly around the 3 months mark is where I started figuring things out a bit [ more ]
Doug K Jaydog- you are a wise man. Nothing is smooth sailing when you cut out your rectum and colon, and make a new one out of a nearby organ. It could be worse for sure. I spoke to the doctor and he said give it two months, and if I am still unable to pass solids well, he would do some tests. He said that dilation is not a big deal. [ more ]
Jaydog I don't know if this will help or not but you are only 3 weeks out. It is all brand new. It takes a while for everything to settle down. When I first had mine it seemed like every few days something new would start that I was worried about then as soon as it started it stopped and another new thing would start. I wouldn't sweat stuff just yet. Give it a few months. [ more ]
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J-Pouch ForumsGeneral Discussion
Prostate Cancer Recurrence
W Wife
maddie18 No, none. But he was diagnosed with cancer and still has it but it's under control. I really do believe that these natural remedies are helping keep it under control. The doctors are surprised that the numbers went down and are monitoring it with what they call 'watchful waiting'. [ more ]
Wife thank you for your feedback. One quick question - is your fiance on any meds? Hormones? chemo tablets? thanks! [ more ]
maddie18 Hi Wife, My fiance's numbers were at 13 with a high chance of requiring surgery. We have done a few healthy diet changes and natural supplements. Much less sugar, less to no processed foods, very little red meats, more fruits and vegetables. We added in a super prostate supplement, vitamin D, B12, oil of oregano, a homeopathic med called nux vomica and probiotics (not sure probiotics will help this but that is another change in habits for my guy). Exercise may help as well. So far his... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
A CHEAPER VERSION OF CALMOSEPTINE?!?!?!! YESSUUUHHH!!!!!
FM Former Member
RondaC I buy Triple paste in the baby section at Walmart. I love it. [ more ]
Former Member That totally makes sense! One thing I do not like about the Calmoseptine is that it goes through clothes lol, that is the only con for me though lol. [ more ]
Pouchomarx CUZ IT MAKES ME FEEL SLIPPERY AND CANT TELL IF I LEAKED OR NOT.. I LIKE THE ILEX CUZ IT DRIES AND I PUT A GAUZE PAD RIGHT UP IN THERE IN CASE OF A LEAK [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic pouchitis
GEB56GEB56
GEB56 That is interesting Jan. [ more ]
Jan Dollar I just had my pouchoscopy a few days ago and I asked my GI how many j-pouch patients she had. She said about 30, but that new patients were going down in numbers. The reason? There are fewer and fewer j-pouch surgeries performed now because of the variety and effectiveness of biologics. That is a good thing. Jan [ more ]
GEB56 Amen to that Jan. [ more ]
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J-Pouch ForumsGeneral Discussion
Splanchnic pooling and j-pouch – any connection?
K Kushami
Jan Dollar Sarah, determining dehydration does not require blood tests or complicated studies. Basically, if you are consuming enough liquids that your urine is light yellow or almost like water, you are hydrated. If your urine is very concentrated, low volume, and you urinate infrequently, you are dehydrated. Also, hydrated skin will snap back quickly when you pinch it from your arm. Dehydrated skin returns rather slowly. This is all stuff they teach in basic nursing school classes. You can learn a... [ more ]
Sara14 ❤️
Former Member How much water do you drink??? [ more ]
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J-Pouch ForumsGeneral Discussion
Vegan with a j-pouch?
Sara14Sara14
Sara14 Grilled romaine sounds amazing! Romaine is the lettuce I usually buy for my salads. [ more ]
CTBarrister I have grilled romaine hearts by slicing them in half lengthwise, brushing them with olive oil, salt and pepper, and then putting them under the broiler until browned, topping them with shredded Parmesan Cheese for the last 2 minutes of cooking time. More often I eat them raw, but if they are hanging around the refrigerator for a week or more, they are usually good candidates to be grilled or broiled. [ more ]
Former Member ❤️
See all 33 replies...
J-Pouch ForumsGeneral Discussion
Dr or nurse question
L Leeloo
Former Member Thank-you dear [ more ]
Jan Dollar This was an interesting read and I do think it may be a useful tool in the future for delivery of bowel targeting medications. Plus, anything to have new treatment options for diabetes is a great thing. I also took a look at the related articles linked to this, which led me to find the abstract about a similar product for treatment of IBD. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4825054/ Jan [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Antidepressant
RondaCRondaC
Former Member ❤️
Former Member Oh good!!!! Glad to hear that! I found out the hard way, on here lol. I like to dance for exercise, what would you like to do??? [ more ]
RondaC No I'm not in extended release. I do need to exercise more. [ more ]
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J-Pouch ForumsGeneral Discussion
Deciding on J-Pouch
GH Grace h
Jan Dollar Grace, Please go to the women’s forum to look at all the women who have had successful pregnancies with a j-pouch. I cannot imagine any surgeon willing to do an IRA when you have UC, unless you never had rectal disease. If that is the case, it is less likely to be UC than Crohn’s colitis. Every person here who had an IRA had nothing but grief with it, and wound up getting a j-pouch or end ileostomy. If you are close to your childbearing years you may just want to stick with the ileostomy... [ more ]
Former Member I think just about everything has pros and cons with it unfortunately. I would definitely recommend the J-pouch or the ostomy. Not everyone has problems with a J-pouch. I have had my J-pouch for almost 7 years: I never had pouchitis or any major problems with my pouch. The only problems I have had are dehydration if I do not keep up my water intake and constipation if I REALLY REALLY OVEREAT lol. SO far everything is great! I would say take a chance, if things do not work out, at least you... [ more ]
Sara14 ❤️
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Constipation in the morning
P Pouch2021
Jan Dollar Pouch2021, I think your function is fairly typical, especially this early. If you are taking a bowel slower, you may want to tinker with the timing on it. If you are taking loperamide (Imodium), you may want to reduce it. It tends to increase the muscle tone of the sphincters, and some people perceive this as a “heaviness” or crampy sensation. But generally, things should improve with time as your gut acclimates to use of your pouch. Jan [ more ]
Former Member Drink a lot of water when you wake up! That always helps me in the morning [ more ]
Sara14 ❤️
See all 2 replies...

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William J. Johnson
bjohnson@j-pouch.org

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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