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J-Pouch ForumsGeneral Discussion
Bacterial Overgrowth
L liz11
vanessavy Sugar is the culprit to it. Shen diagnosed mine at Cleveland CLinic. There are a lot of recipes and cookbooks out there for small bowel bacteria overgrowth. Mainly just sugar, but sugar is in everything. The minute I went gluten free and sugar free I was off antibiotics. It can take a year for it to really work it self out. For me after a week it is a drastic difference. Processed foods also are very bad for it. Pinterest if you follow it has great recipes for small bowel bacteria... [ more ]
liz11 no breath test. Just think it was a process of elimination diagnosis. And also confirmed by the fact that xifaxan has made a huge difference. I have only read about xifaxan for sibo. So Liz, please share what else you found. My luck, its probably one of the other 7 or so antibiotics I'm allergic to that they might recommend. As for the adhesions, I don't think they show up on a MRI. But regardless, even if they did, nothing can be done about it, unless you just operate again and cause more... [ more ]
Pluot I was diagnosed with SIBO last year... did you do a breath test to confirm? Xifaxan was the only treatment offered to me. We never really explored it further because my GI's theory was that the SIBO was aggravating my UC, but Xifaxan didn't improve the rest of my symptoms so we kind of stopped exploring that avenue. From what I've read online Xifaxan might not be the antibiotic of choice for SIBO anymore. Unfortunately my understanding is that diet based interventions for SIBO don't need to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bloody stools and BM "Events"
JR Jackie R
Jan Dollar First question I have is what sort of j-pouch do you have? Is this an ileal pouch or colonic pouch? I ask because it makes a world of difference. A colon acts much differently than the small intestine. But, to me, it sounds like you are having either IBS type symptoms, elvic floor dysfunction, or simply the results of untreated pouchitis. I am unclear why your doctor prescribed cortifoam before antibiotics for pouchitis, unless this was due to radiation damage. If so, unless you use the... [ more ]
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J-Pouch ForumsGeneral Discussion
Anastamosis stricture dilated under anesthesia
rachelravenrachelraven
rachelraven So my CRS said I did *not* have a stricture, that I was narrowed by inflammation at the anastamosis site. He said I had no issue in the pouch, and the anal area was fine, too. He also tried to adjust my seton, and it was friable enough that it broke. Maybe all that acidic small bowel stool + straining had something to do with it. He showed me it, and he barely had to pull for it to break. He said it would have broken on its own soon. No plans to replace it at this time. I'm guessing it will... [ more ]
TE Marie rachaelraven, I'm sorry your are going through all of this. When we have these problems I wish they could take us and put us in a nice comfortable hospital like place where they are observing us 24/7 with a nursing staff and see what we are going through. I am convinced they have no concept what we are going through after we leave their offices. I hope you are feeling better soon. [ more ]
rachelraven I think it was that last run of Cipro with the seton placement that threw me under the bus. [ more ]
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J-Pouch ForumsGeneral Discussion
6 months and doing fantastic
runner4449runner4449
runner4449 Great job! No need for me to use the bathroom out on my runs at this point, so hoping I never find the need to go, but have wipes just in case. I think most distance athletes (even those with their colon) have a wipe or two on hand. A lot can happen out on those long runs and rides no matter who you are! Anyhow, I'm fine with gels, and was before my jpouch, too. As long as I can stay hydrated as it heats up this summer (which I think I'll be okay with), it'll be just like before I had a... [ more ]
JG I'm about 1.5 years since my one stage J pouch surgery. I ran my first marathon in January 2013 in Miami. I've found that if I do not eat before running, I don't feel sick (probably nothing to do with the J pouch) and I don't need to stop to use the bathroom more than 1-2 times in a really long run..like 20+ miles. I did at least 12-14 miles on a reg basis without having to stop using this method...and apparently I had pouchitis during this time and didn't realize it. I got on antibiotics... [ more ]
runner4449 I have no trouble with the capsules. I buy the generic ones from Sam's club. Take 3 of them most mornings (sometimes I can just tell I'll be fine without them), and they help keep things moving at the right pace and consistency for me. Good luck! [ more ]
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J-Pouch ForumsPouchitis
Pouchitis again
W WW_Domenic
Scott F I respectfully disagree with Frederick's advice. Cipro can certainly have consequential side effects, but most people who use it have no tendon issues, and it's often the right medicine for the problem at hand. Every medicine includes some risk, and involves balancing that against the benefit. [ more ]
Frederick Please get off the Cipro. Your Doctor should know better. It destroys your tendons. [ more ]
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J-Pouch ForumsGeneral Discussion
Fistulas, to continue antibiotics or to forget about them??
n/an/a
Manchester I thought anti-biotics were keeping my fistula in check but I had to stop them as they were causing recurrent pancreatitis. My fistula is behaving just as well without anti-biotics and just a seton. [ more ]
Jan Dollar That's pretty low dose on the flagyl. If he does not develop side effects or resistance, I'd stay on it as long as it is useful for him. You can switch to probiotics and rotate, but I would stay on it a minimum of 10-14 days at a time. Jan [ more ]
cdecker My husband is on flagyl. 1 250mg twice a day. He is doing well on it. How long to stay on it before we rotate to a different anitibiotic is my question? Can we switch to PB in a week and then just go back and forth between the two? Needing help on how and what to rotate the antiobiotics. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Not pregnant, would like to be someday...
KelseyHey2308KelseyHey2308
rachelraven I got pregnant naturally with my daughter within 9 months of trying. One year after her birth, I had a large mucous ovarian cyst removed, and the doctor (a fertility specialist) said she was "an act of divine intervention" because of all of my scar tissue. He predicted I wouldn't get pregnant naturally again, and I didn't... But we opted to stop trying and be happy with our one beautiful girl. He did say I was a good candidate for IVF, but we didn't go there. So it might happen for you. [ more ]
LC I totally get where you are coming from. I had my surgeries when I was a young teenager (14) and I don't think they ever told me about the infertility issues. Its also possible I didn't think of it because I was so sick and desperate. In either case, I always planned on having one or two kids but didn't seriously think about it until I got engaged to my husband and started to read about the statistics. Needless to say, I had a serious meltdown when I saw the numbers. My husband pointed out... [ more ]
Pluot For what it's worth, one of the surgeons I consulted with told me that the pregnancy rate is identical between women with j-pouch and without -- IF you take into account fertility treatments. So, in other words, it's true that you might need to use fertility treatments, but in the end you're just as likely to be able to get pregnant somehow as someone who hasn't had a few abdominal surgeries. Like everyone else has said, you really can't start worrying until you try. [ more ]
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J-Pouch ForumsHelp! Need advice now!
"Diet" or Foods for Jpouch Books
LaneyLoveLaneyLove
Lynne2 I believe finding a useful nutritional approach to IBD requires trial and error. Much of the SAD (Standard American Diet) perpetuates illness, in my opinion, and I encourage anyone having difficulty to experiment with different approaches to food. I have found Paleo to be a good fit for me, though I also draw from SCD and GAPS. Do some research, try what makes sense to you intuitively, and keep a journal along the way. Good luck! [ more ]
clouseau I found this book very helpful. Living with Crohn's & Colitis: A Comprehensive ... - Amazon.com www.amazon.com › ... › Diseases & Physical Ailments › Abdominal Rating: 4.9 - 14 reviews - $13.50 - In stock Dr. Black and Dede Cummings' book offers a unique, balanced perspective for those living with Crohn's disease and/or colitis. Dr. Black succinctly and clearly ... [ more ]
n/a You might take a look at the book "Breaking the Vicious Cycle: Intestinal Health Through Diet" by Elaine Gottschall. In a nutshell, this diet works by severely limiting the availability of carbohydrates to intestinal microbes. While not specifically for j-pouches, I think the theory applies to those of us without large intestines as well. I've been on the diet for about a month now (I'll be honest, I am not anal about it hee hee), and my jpouch is behaving so much better, as in fewer BMs,... [ more ]
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J-Pouch ForumsGeneral Discussion
Iloestomy bag and Sports (Intense)
S Solomin
Bogey I used a Stealthbelt Pro before my takedown operation and found it to work well... I wasn't doing really intense sports like Hockey I was more into Skiing and Cycling, but it did work well to keep everything in place. The Pro version has a velcro closure that lets you strap down your bag fairly snug against your belly. If you want to try one cheap I still have both my Stealthbelt Pro and the Comfort Band model in a 34" waist with a 2 1/4 flange opening for a right side ostomy. Used but in... [ more ]
Former Member Yeah, for me, the Imodium slows down my ileostomy output, it thickens the output too. During day to day activity, I find the bag more comfortable to wear with thicker contents, if any; rather than it be more loose. [ more ]
JRD I played rugby for a period while I had a temporary end ileo and took a few precautions; I wore a "modesty belt" which is basically a waist wrap with a pocket for your pouch (try Stealth Belt or My Ostomy Secrets). I also wore a compression shirt to aid in keeping things where they belong. I was tackled many times and wrapped in the mid section, things stayed where they belonged. Obviously a little soreness for a day but after a rugby match soreness is more than expected. Since then I've had... [ more ]
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J-Pouch ForumsGeneral Discussion
Exercise and Sacroilitis, severe joint inflamation
skn69skn69
kta This may be totally not what the doc recommended,so to speak, but I have a lot of back issues and I found a physical therapist who made more difference than any one thing other than meds. The whole pain thing is so horrible. When I was at my worst, it scared the heck out of me to know what I would do to relieve the pain. If someone had offered me anything to take it away, I very well might have said yes. I guess it was "lucky" I was in too much pain to get up, walk and find something/someone... [ more ]
Jan Dollar I don't know if biologics are lifelong for me or not. I don't much care either. What matters to me is that I can function now. I think you need to make this a priority, but only you know whether this is important enough to follow up on. Jan [ more ]
skn69 Thanks Jan, I seem to be in a permanent flare lately...with all that is going on right now, I cannot even think about making an apt with the Rhumey so that will just have to wait (I have 3 refferals that are sitting on my desk and will never get done)...I need a good hour while my body wakes up before I can workout but then I feel great for about 3 hrs afterwards (my bliss hrs) but by evening I want to pull my hair out...Can't sit, lay or stand...the only comfortable place is in the tub or... [ more ]
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J-Pouch ForumsGeneral Discussion
ileostomy andpublic swimming
S Solomin
LauraJo Nexcare has a great foam tape - you can get it at the grocery store. I used to just run a strip of it along the outside of the wafer, never had any leakage problems, and I swam all the time, pool & beach. Cheap & effective. [ more ]
vanessavy Check out the Stealth belt. Popular one http://stealthbelt.com and can hide it. [ more ]
Solomin how do you hide the bag being male? My ileostomy is above the waistline. Thanks, Mark [ more ]
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J-Pouch ForumsGeneral Discussion
From J Pouch to Ostomy - Need Support
P PoucherInTO
liz11 had my jpouch removed a little over a year ago. I LOVE LOVE LOVE my permanant ileostomy. I do have a chronic wound which is in the rarest of freak cases not healing and I've had to undergo many many EUAs and other procedures in the last year for that. But even with all of that... I would still do it all over again. Did I say.. I LOVE my perm. ileo? [ more ]
PoucherInTO JillM: thank you for the suggestion on "Prepare for Surgery, Heal Faster". I've looked it up and think it looks like a great program to use! I'm going to order it online for sure. I will also PM you as I have a few more questions that I'm hoping you can help me with. UCWarrior: thanks for reading my post and wishing good luck! We're about the same age (I'm 33) so if you ever have jpouch questions feel free to contact me for support as well as it seems your takedown was quite recently. [ more ]
chiromancer I had my pouch removed a little over 4 months ago. Done laprascopically 4 + hrs, Hospital 5 days recovered quickly, didnt have anus removed which I am sure sped up recovery. Everything is good. [ more ]
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J-Pouch ForumsPouchitis
VSL #3 available, not being used
N NathanG
wazzou2 Hey Nathan, I would be glad to give you some compensation for the VSL, if you are ok with shipping them. I'm in Colorado, so nowhere close to Delaware. They should last unrefridgerated for the duration of the shipping time. Mike [ more ]
NathanG its powder. I mixed with yougurt, tasted fine, so dont let that stop you. [ more ]
Scott F The double strength is powder in a packet. I mix it in yogurt and don't taste a thing. [ more ]
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J-Pouch ForumsHelp! Need advice now!
re:spinal cord compression pain with j pouch surgery
F Friedabacal
skn69 Friedabacal, Sounds awfully familar...what you are describing could be 2 seperate things as well...the lower back/Coccyx pain is possibly your pouch pushing against the lower back as you said...(I get it on the front from my K pouch when full due to it being so low and pushing on my bladder/female orgains and hip area) and the other pain sounds like sciatic nerve pain...then again there is always sacroilitis which is an inflamation of the region (the joints in the pelvic/hip/sacrum... [ more ]
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J-Pouch ForumsHelp! Need advice now!
S Pouch w FAap
B BrenMc
clouseau I find calmoseptine cream, ordered in from Walgreens, to be the best potectant for me, I've tried all the others. Also I recommend avoiding sugar and gluten, which turns into sugar( non gluten breads and pasta and crackers). I empathize and hope you get better soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Mom was just diagnosed with cancer.
K Kia
TE Marie Very good advice Jen. My daily calls to dad are filled with what we did that day including what's for dinner and what the latest project my husband is doing around the house and my dad loves to talk about all the projects he did around his houses and the house he built. We go to happy times. We also talk about how my husband and I are driving there Sunday to take him to an important medical appointment at the University hospitals Monday but we end up talking about the low mileage on our cars... [ more ]
Jenmystique I've had lots of experience with people battling cancer. One thing stands out to me. A good friend had a soft tissue cancer in his knee that spread to his lungs before it was diagnosed. This happened to be a rare cancer that only 3 doctors in the USA knew anything about. He saw all three doctors. (just back story info) He was a husband, father, and step father in his late 20's. He died at 29. As time went on during his battle, he told all his friends except me and my boyfriend that the... [ more ]
gutless1993 Hi Kia, My Mom was diagnosed with cancer last year - tumours are on the outside of her bowel. Chemo caused her to be weak, and she fell and broke her hip. Chemo also caused a heart attack and pneumonia so she is no longer on anything. Like your situation, my Dad and sister are with her and my sister has also been a rock star. If you need anyone to bounce things off of, please send me a message. Prayers for you, your Mom and family. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pressure in Anus
T tiffanygoad
Txgal58 TE Marie is right. Pouchitis is the first thing that comes to mind. I've had it a few times over the 15 yrs I've had my pouch; most of it occurring in the 1st 5 yrs. Only your doctor can tell for sure what's going on by scoping your pouch. Antibiotics usually take care of it quickly! Of course some dietary changes may need to be discussed with the Dr. as well. [ more ]
TE Marie There's a lot of things this could be. First of all have you changed your diet? Then there are at least 3 things that all have similar symptoms including more frequency, they are: pouchitis cuffitis c-diff infections. The only way to tell is to go see your doctor. You should be due for your first pouch scope so if I were you I'd schedule that and tell your doctor your frequency has been increasing so they will take more biopsies. The scopes are very easy, compared to colonoscopies etc. Good ... [ more ]
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J-Pouch ForumsGeneral Discussion
Question about bowels waking up
U UCWarrior2010
Txgal58 About 6 weeks after my takedown surgery I suffered a bowel obstruction and had a 3rd surgery for adhesions. After so much anesthesia and pain meds in a short amount of time it took forever for my bowels to get going again. I was on TPN to try and slow down the weight loss. I was off food for so long it took a long time for me to get to where I even cared about eating again! Best wishes for a speedy recovery! [ more ]
Holly M Congrats on getting home. Keep us posted on how you are doing. [ more ]
TE Marie Congratulations! I'm glad you are finally home! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscess question
toobusy2cleantoobusy2clean
toobusy2clean I took my daughter to our local ER on Wednesday because she was still in so much pain after her abscess perforated. As it turned out, her abscess had closed up. They gave her an ultrasound which showed she still had fluid in it so they did another CT. The CT showed fluid and an air bubble. Now we are thinking it's a fistula. When we got home she said she felt like air came out of her vagina and then pain at the abscess site. She has an appt with a colorectal surgeon Monday afternoon. What... [ more ]
liz11 yes, I've been on more than 5 types of antibiotics for abscesses. If they are doing things correctly, they involve infectious disease docs and determine exactly what the bacteria is so they know what drug will attack it. As for cdiff - it doesn't prevent you from taking antibiotics. It just means you have to be sure you are checked for cdiff. It is pretty important to get the abscesses cleared up. In my case - they slam whatever drugs they need to into me, and then if I have problems - they... [ more ]
Jan Dollar The type of antibiotic depends on what the bacteria is (or suspected bacteria), not the fact it is an abscess, because it can be a variety of bacteria, both aerobic and anaerobic. With my presacral abscess I was on three different IV antibiotics. Are they sure this is not a bartholin's cyst/abscess? The location sure sounds like one. The fact that it is draining does not mean it is fistulized, particularly if it was close to the skin. A fistula is more of a long narrow tract. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula?
G Ginabello
Ginabello Hi Rachel I'm sorry to hear about what you are dealing with.. You are right it's hard for people to truly understand what we go through. I always get the but you look good comment..I have learned to not let it get to me.I hope things get better for you(: you have helped me I took your advice and asked for a MRI and am getting one now.. My symptoms are the same except for the lump changing its location and when I bend down there is a strange ache in my rectum? I will continue to hope for the... [ more ]
rachelraven My abscess turned fistula always discharged blood. Never really did pus or ugly stuff, just old blood, and then fresh blood, every time it would cycle. I have a seton now. That part of me seems at bay; other parts of me are broken at the moment. An MRI confirmed my fistula tract, a "common" intrasphincteric one at 7:00. I've felt off for about a year now, then this abscess happened and things are spiraling. I had 22 good years, and now the past 4 months have been a mess. [ more ]
jeane I have cuffitis and small ulcer in distal pouch on or near anastomosis. I also have a lot if of anal pain, burning and discomfort often As of this time no abcesss or fistula has been diagnosed. Hope you feel better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lots of issues going on, need support
BeckyMBeckyM
skn69 Oh Becky, I am so sorry that you have to live through this...just not fair...I know how scary and frightening thing can be when there is a sword hanging over your head and you don't know which way to turn...for the smell, I have found that 'we' smell things more than other do...usually we are oversensitive about it while the rest of the world doesn't even realise it...So don't allow that to stop you from living...I was diagnosised with vaginal cancer when I was 23 and went through the... [ more ]
TE Marie Becky, You are one strong lady. It's your body and medical professionals forget that we don't all know the same as each other. You need to tell everyone how this is affecting you and that how bad the anxiety and the urges are. Jan's advice is awesome. Kathy is right about putting some Vicks under your nose or rub it into the top of your chest. This sounds so unpleasant. I hope it ends soon. Do you know when you will have the surgery yet? Give them hell if you have to! [ more ]
Jan Dollar Becky, I'm sorry you are having to deal with all of this and then also to have to jump through hoops to try and get the attention you need. I suppose the nurse was just saying that there was no sedation planned for your catheter change. But, I think if you speak to your doctor directly (or at least make sure he gets the message), there should be a reasonable solution for you. Tell him what you told us, that you are having a lot of pain anyway, and extreme anxiety about the catheter change. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3
V ValB
TinCan We can quibble about price, but my only point is that VSL is a good value if looked at in terms of the amount of probiotic per unit cost. That may be important for those of us needing larger cfu numbers to obtain therapeutic results. But by all means, go with what works and makes the most sense within your budget. [ more ]
vanessavy I paid 36 dollars for my Align not 50. I use Amazon for a lot, if you have Prime it is even better The generic in Florastor is cheaper. I now get that. I got suckers into this one! When I tried VSL and Align months back, VSL messed me up. I had less side effects with Align. A guy donated a ton of VSL sachets to me around that time and I gave it to a friend. If Align works it is cheaper and you can just grab it at a pharmacy as well. [ more ]
Jan Dollar I get the Align on Amazon through their "subscribe and save" program, making it 68 cents per capsule, and shipping is free. I don't use it anymore though. My husband is the one using it. He has UC and finds that it helps with his IBS type symptoms. He takes it twice a day. It also does not require refrigeration. He is the type of guy who would never mess around with a packet of stuff he had to mix with yogurt or applesauce or whatever. He thinks it is a nuisance to take an extra pill! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Burning Poop
creepnjeepcreepnjeep
TE Marie Calmoseptime is the best I think. OTC at Walgreens, I order it 6 tubes at a time from Amazon to get a better price. The TP you use really makes a difference too. Charmin Ultra Soft or Strong is my favorite. Also please dab not wipe. Your rear has gotten soft from no use lately and your poo has 30% more bile in it than before the surgeries. It also helps if you can get some kind of Bidet seat or sprayer to wash your behind with after each BM. We ordered a $50 sprayer converter kit from... [ more ]
creepnjeep Hey thanks for the help. I meet with the Dr. this next week so I will ask him about some of this. I use Boudreaux Butt paste all the time. It does seem to help. I also use cottonelle butt wipes. I guess I just got to let my butt get use to going again. Before the UC and at the start of UC I got bad hemorrhoids and a prolapse colon from going to up to 40 plus times a day. Feels like that at times. I'll try fiber drinks to thicken things up. Also the warm baths sound good too. [ more ]
ValB Welcome to the world of jpouchers....the butt burn is perfectly normal and to be expected. There are several good ointments that can be used to help with this...one I like is Boudreaux Butt paste..external use only. I've also seen recommended use of premoistened wipes and lots of sitz baths to help. Just a suggestion but maybe talk to your GI surgeon about some kind of reflux mex like nexium or protonix....not for reflux but simply to help neutralize the stomach acids that you are passing. [ more ]
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J-Pouch ForumsGeneral Discussion
question....how much do we reveal on intervview
Holly MHolly M
TE Marie Holly, Sounds like a good plan to me. I was working part time before I had the surgeries because of UC and other health issues. I'd just like to suggest you get paychecks for the work that you are doing. This way if things do get worse down the line you will be able to file for social security disabiity income. I'd paid into it since I first started waiting tables at age 15 and because I'd worked so many quarters out of the last so many I could apply and the amount of the benefit is based on... [ more ]
Cataja I would not be able to do my job if I still had my j-pouch or UC. I work at Mall of America as a makeup artist. I'm generally with a client about an hour at a time. And...we don't have a bathroom in our store. We have to go over to Nordstroms..which is about a 3 minute walk. [ more ]
Mike Chiolero Look at it like this, smokers take breaks, people gossip, etc. You go to the bathroom, no big deal. Keep a bottle of loperamide in your bag, pop a couple to slow things down. Also try and regulate your diet. The way that I look at it, if you are trying to resolve the issue, then you're doing your part... no worries, and good luck on your interview! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Weird issue with twitching eyes...
DT Duct tape, Zip ties, and J-pouches
Jan Dollar Glad things checked out with the neurologist! Sometimes weird stuff just happens and it is just a blip, but with your symptoms piling up, it was worth investigating. You never know if these things are a "mini-stroke" or just nothing. Those sorts of deficiencies are pretty rare, but certainly possible. Watching TV and reading on the internet can be dangerous and make you lose a lot of sleep! Jan [ more ]
Duct tape, Zip ties, and J-pouches First of all,I am feeling much better Neurologist couldn't find anything wrong. I was pretty distraught. I was watching a tv show on lead and it was talking about how it gets absorbed into the body (by mimicking zinc) and it started to list symtoms I was having. I work with lead quite frequently! I started researching Zinc Deficiency. Well the zinc deficiency wasn't due to lead but FIBER supplements and gastrointestinal absorption. So I have limited my fiber intake, and increased my zinc... [ more ]
Jan Dollar I think you need to call tomorrow and tell them about this new symptom. It seems that new neurological symptoms keep cropping up,and I don't like the implications, even if your MRI was good. I would push for an urgent referral if I were you. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Chiropractic
P PW
PW Thanks for your comments I get about the same idea in general. Many times you just don't know what to do; however, chiropractic does help. Another thing I have been taking is a supplement called Protandim and have a meeting to go to tonight with a speaker who has fibromyalgia and lymes for 20 years plus, was told by the Mayo clinic she would not be able to walk. She is doing extremely well on this supplement. Thanks again for your kindnesses and may the Lord bless your every need, Paul [ more ]
nocolon-2000 I've been under Chiropractic care since early December for my back, neck, and shoulders and it is definitely helping in those areas. I think they thought it would help my pouch/Crohns/etc., but other than setting me off on a small flare in December, things are pretty much the way they have been. I have noticed an increase in sinus issues since starting but I am working on that with an ENT as well to see if it's related or just fluke timing. My doctor has be doing stretches, massage, and... [ more ]
TE Marie I agree with JeffDC. Chiropractic has helped me but not specifically with UC or my j-pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain in my jpouch!
Z Zee87
Jan Dollar My guess is adhesion related pain, since your pouch scope looked good (although that was before this new symptom). You could have a stricture forming, but difficult to know with these symptoms (too soon to tell). Since you have FAP, unlikely that it is pouchitis brewing, but it does happen. Could be something as simple as a virus you picked up. Just keep track of things and call your doctor if this pain persists or becomes severe. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recent Takedown and butt issues
F FXT
BrenMc Thanks FXT, I'll def try it. Fingers crossed. [ more ]
FXT Thanks for the responses guys. Kta I havent looked at the food list and will look at it asap. Even though right now my symptoms are good, you never know whats going to happen after antibiotics run their course. ValB my doctor didnt give me a script for any reflux meds. I tried Pepto (after reading in a few threads that it worked) before the metamucil trick but I havent used it since. The only things I take currently are yogurt with probitic and half a Vicodin (although this was replaced... [ more ]
FXT Havent updated in a bit. So the doctor suggested I go in for a contrast CT and they located an abscess near the right side butt wall and put me on two strong antibiotics. I should be having another CT in a few days and then possibly a drain inserted depending on my symptoms. (fingers crossed that its not a fistula) I just finished the antibiotics today and everything has been going alright. Metamucil was a godsend and fortunately I havent had butt burn since I started taking it. I have... [ more ]
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J-Pouch ForumsGeneral Discussion
Roller coasters/sky diving
B bratcat
bratcat Thank you for the responses. Like I said, I kind of knew the answer before I asked, but just wanted to see everyone else's thoughts. It's good to know that there seem to be no issues with any of it. suebear, I remember you and my mom talking over on HealingWell! You were very helpful when I was deciding to have surgery. And, time really does fly by. Especially when you're healthy and can really enjoy life. [ more ]
Goodspeede Go for it! After college my first job was a parachute packer for a local skydiving business. I jumped, of course. It was only 8 months after my take-down surgery. My boss said he has jumped with people who have an ostomy-bag as well. One of those belly-band things would probably come in handy for someone who is concerned there bag might fly off ... don't worry it won't. But please do go jump. It makes all you problems seem so small - a very good experience. Have fun! [ more ]
ValB I too am a Space Mountain fan...been to both, Disneyland and Disneyworld. WAY too much fun! Have a good time and enjoy yourself...let us know how the skydiving was...I'm too much of a chicken and have a problem with heights but I can always live vicariously thru someone else! Enjoy! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't sleep, had some bad news from doctor today
R rsz
rsz Had surgery on March 26th. Very tough surgery, a lot more pain then any of my previous surgeries. Currently just laying around the house, seems if I find just the right position to lay in and not move I can get almost comfortable. Lots of swelling and constant drainage from butt wound, saw the doctor on Monday and will have to hold off on stitch removal until swelling and drainage goes down. Surprisingly to me they didn't put me on antibiotics saying that they most likely wouldn't help and... [ more ]
itsnotsherry Try wearing boxer shorts, and not sitting upright but kind of lounging. My butt wasn't much of a problem. 7 months later still tender but not painful. My doctor said it takes about a year for new skin to thicken up. Best of luck! [ more ]
Chuckus Where in Florida are you rsz? [ more ]
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J-Pouch ForumsOstomy & Skin
Concealing your bag?
EricEric
itsnotsherry HI Eric, I am so glad you are feeling better. This ileostomy thing sure is a trip, isn't it? Here is what I have tried, since I have had my permanent ileostomy. I tried the pheonix belt, and wearing the bag sideways wasn't an issue, however, the belt itself was bulky, hot, and just plain uncomfortable. You also completely lose your wasteline, and I like to wear somewhat form fitting clothing. This also requireds a 2 piece system, and I know from other posts, you were probably going with a... [ more ]
WinniethePooh Eric, I wear the phoenix ostomy belt. It requires that the bag is sidways. I have never had a problem wearing it that way. Keeps bag close and secure don't feel any added weight. All of my shirts have some sort of design on them. A lot of plaid shirts, it makes the "bump" invisible. If you get any ostomy belt, wait until the swelling has gone down. Good Luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking poo anyone?
C crazy
Mike Chiolero I went old school when I had night issues. Tincture of opium. Basically it's a nasty tasting fluid that will lock-up your guts, but not give you any euphoric effects of opiates. You might need to press the issue if you want to try it, becuase there can be some dangerous effects if you OD! I go to the VA so my Dr's rotate all the time, this was suggested by my 3rd GI doc and it worked great. He was scratching his head, and told me to, "try this." I'm glad I did. It's a pain in the butt to... [ more ]
Jan Dollar Was your surgery for fissure a sphincterotomy? If so, one of the possible complications of that surgery is permanent damage to the sphincter, leading to incontinence. If that is the case, then thickening the stool is one of the few options. http://en.wikipedia.org/wiki/L...ernal_sphincterotomy Jan [ more ]
crazy sorry it has taken forever to get back on here I still leak every day exspecially during exercise. I take 6-8 immodium a day and started taking tru biotics at night. I also take fiber choice a few times a day. [ more ]
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J-Pouch ForumsOstomy & Skin
Post op pain, possible partial blockage?
EricEric
Eric Just an update, feeling 100% better then I did a few days ago. With the type of pain I was having, I suspected an infection, so I started myself on a course of Cipro (I always keep some handy), in less then 24 hours it began to work, and now, I can almost eat normally and the abdominal pain is all but gone. Still feel a tad neaseaous, but nothing I can't handle, now it's my incision causing most of the pain. My home care nurse has been removing my staples bit by bit as I've had several small... [ more ]
liz11 eric - there are some strip kind of things that you can kind of "putty up" and put in skin folds. I think by hollister. PM me know if you can't find them and I will hunt my stash and find you the exact part numbers. Also - remember you are recently out of surgery so your abdomen and stoma will be changing shape for awhile. So maybe this skin fold thing is just temporary. and yes- since you are so soon out of surgery.. time to see the doc. Better to go see him tomorrow and get everything... [ more ]
Eric Already did that, no answer as usual, I'll get Freddy to drive me over there tomorrow, but, touch wood, I am feeling a little bit better, I actually kept food down today, and the neasea is slowly subsiding, fingers crossed! Eric [ more ]
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J-Pouch ForumsGeneral Discussion
Questions from Partner of J-Poucher
G grifter
cdecker My husband has a pouch and it has been a difficult road for both of us. It is hard to see your loved one go through such pain and agony for solo long. My husband had his colon removed in Aug 2012 and first was able to have his take down on Christmas eve. We are slowly starting to figure everything out. He is still tired. Not a lot of energy. Chronic pouchitis. But we are starting to have more good days then bad days. This website has helped us greatly. All you can do is be positive and live... [ more ]
TE Marie It's very depressing to go through. It is a disease and surgeries below the waist and people don't want to talk about it and hardly anyone knows about it. Ask them about FAP and you'll bet blank stares. She should have better control than she does so she could have a problem like pouchitis or and infection like c-diff. Lucky for her she won't get cuffitis. Is she taking anything to thicken her stool like Metamucil and Imodium? Those are very helpful. It's hard to explain how we feel because... [ more ]
grifter Thanks I want to help and I do help it's in my nature. I only met her shortly before she got the news so could have walked, she thought I might. Guess that's a good thing from her point of view. I do still moan at her as she is a bit sloppy in her ways and been a bit slack in her ways recently so need to get her back on her feet. I know if you are ill it can be easy to let things slip but that's not good for the mind body or soul! [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Granuloma found on my biopsy-panicking
G Grace3
Jan Dollar The medical literature states that granulomas found in the transition zone or the suture line are not reliable indicators of Crohn's, as granulomas can form due to a reaction to the surgical connection. So, please don't panic about this. Jan [ more ]
elooney Hi Grace3, I'm just wondering what ever happened? How have you been treating the inflammation and the granuloma? I hope all is well, E [ more ]
TE Marie Did he prescribe you an antibiotic or two to take at the same time for pouchitis. Did he say it's pouchitis? If he did biopsies ask for a copy of the pathology report. My pathology reports after my scopes said I had UC on my cuff and some other technical terms abut it all describing why it was UC. It also said the other biopsies were ok in my pouch and up a few feet into my small intestines. I wish doctors would explain results and everything better. They tend to zoom in and out with their... [ more ]
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J-Pouch ForumsGeneral Discussion
funky stoma and need for sleep
I itsnotsherry
itsnotsherry oh poo!!! nothing is ever easy, is it?!? [ more ]
Jan Dollar It is real surgery. They need to detach the stoma and reconstruct it. Sometimes they even need to re-site it or do a hernia repair or plastic surgery. But, basically, you need the stoma to protrude and inch or so, so the stool empties into the bag, not undermining the wafer. It is not an office procedure or something super simple. But, it is not like your major resection either. Jan [ more ]
itsnotsherry Thank you for your replies! This is what is happening. What does a stoma revision entail? I didn't know it could be revised. Is it a quick procedure or considered another surgery with a hospital stay? Thank for your help! [ more ]
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J-Pouch ForumsGeneral Discussion
Time to call the GI or hang in there?
K Kia
kta So, Kia, how are things going? [ more ]
Jan Dollar If I have about a week of consistent urgent diarrhea that is unresponsive to Imodium, I start Flagyl. I stay on it for 10 days and continue for another 10 days if needed. If I'm traveling, I start it sooner, lime within a few days. Jan [ more ]
Kia Jan, When you decide it's time to get back on Flagyl, how long do you typically stay on it? [ more ]
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J-Pouch ForumsGeneral Discussion
wow, feeling "normal!"
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Well, four days off Cipro/Flagyl,doing okay. Had an appointment Monday with the surgeon. He was thrilled at how well the C/F worked. I'll be off this week, back on C/F next Sunday to stay on top of the issue. We'll see how this course works! [ more ]
TE Marie Congratulations! I know how important standing up to pee is to you guys Weird place for gas to get trapped as well! [ more ]
PolypsAplenty Way to go! That's pretty hilarious about standing up to pee. I'm two months out, and I accomplished that the other day, and considered it a minor miracle! [ more ]
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J-Pouch ForumsGeneral Discussion
Ulcers in rectum and pouch
AS Angela S
jeane Ang, I am posting my scope results here fyi. When biopsy results come back I will post. My report and pictures show pouch looks good as well as above pouch. An index finger dilation was performed as i still have a stricture at the anastomosis connection. I have a 1.5 cm ulceration in distal pouch and small ulceration at the proximal pouch adjacent to staple line of pouch limb. Rest of pouch looks normal. Rectal cuff showed mild erythema. GI thinks the ulceration in the distal Pouch near or... [ more ]
jeane Ang, Your reporting is a bit different than what I get, but the result is the same...pouchitis and cuffitis as Jan indicated. Hopefully they have started you on some treatment and you should get rescoped after treatment. I never have pouchitis symptoms (for them most part) even though I always have some inflammation in my pouch at scope time. My typical treatment is cipro and rectal suppositories (the latter which seems to do nothing but help minimize my constant rectal discomfort). I have... [ more ]
Jan Dollar I wouldn't get too worked up over the terminology in the path report, as it is fairly common. The pathologist is just reporting what he sees and often the GI does not have detailed labeling. It probably stated that it was obtained from sigmoidoscopy biopsies or something. It is also common for the pouch to develop rectal-type tissue changes over time, so under a microscope it looks colonic or rectal. The main thing is that it appears you have pouchitis and cuffitis, not so good news. No... [ more ]
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J-Pouch ForumsGeneral Discussion
Trying Uceris
DW Dave @ Wa
TE Marie I was just going to ask about c.diff Jan. I tend to see it everywhere as I get it too often. It's a simple go to the lab and poop in a bowl test. Please do that before you take that devil prednisone. If the doctor says you can't get it tell him you can as I get it and others on here do too. For that you need Flagyl or vancamyacin and it's contagious, if you are not clean, spore like that can end up in death. (If you end up in the hospital they put you in isolation like they do MRSA... [ more ]
Jan Dollar Uceris is the same medication as Entocort (budesonide), however it is delayed release until the colon. So, like other UC meds, such as Asacol or Azulfidine, it can be used for ileal pouch issues. The delayed release is pH dependent, releasing when the pH rises. http://www.uceris.com/patient/...-provides-relief.asp What has me baffled is why your doctor chose Uceris over Entocort, which definitely releases in the small intestine. Entocort is even available as a retention enema, if you wanted... [ more ]
Scott F I've had good results with prednisone tapers for other inflammatory processes. I've not used it for GI issues in a long time, since there tend to be better choices, but short-term use is pretty safe for people who've successfully used it before. [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis
CB CLAUD B
TE Marie The symptoms are the same, the only difference is cuffitis can bleed but it doesn't always bleed. It is just inflamed at the cuff. Pouchitis is inflamed in a larger area of the pouch. Pouchitis can be treated with antibiotics and cuffitis can't. You can also have both at the same time. I have had a c-diff infection at the same time as cuffitis and it has the same symptoms too and it is treated with antibiotics. I'm sure your doctor is going to take a lot of biopsies and pictures. Ask her/him... [ more ]
CLAUD B Thank you...it sounds exactly like whats going on with me, but im not sure i understand the difference between the pouchitis and the cuffitis. My doctor wants to scope me next week.Im feeling really weak..the increased bathroom trips all seem to be in the night.since my takedown things had been relatively ok with the occassional blockage and pouchitis. no onetells you all this..thanks for the info [ more ]
TE Marie Did you have UC? If so you can get cuffitis which is UC at the cuff where the j-pouch is stapled to the rectal stump. The most popular surgery is the double stapled procedure. They remove all of the rectum with the colon except for around 2 cm of the rectal tissue at the very bottom and that is what they staple the j-pouch to attach it to the rectal cuff. As that tissue can get UC in some of us it does. Bleeding can be from having UC in that little bit of cuff tissue and it can be very... [ more ]
See all 3 replies...

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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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