Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Pouch dialation
AP Al P
Former Member Of course a mean person would not think their wrong. You called my statements nonsense, gilb, fanciful, and you have been mean. Disagreeing is totally fine, a lot of people on here have disagreed with me respectfully without insulting my advice- that is fine, but you have been disrespectful. If you would have asked politely for the sources, I would have been more than happy to have given them to you. I never threatened anyone, I was giving advice to help people. If you read my statements,... [ more ]
Scott F Stool holding is a genuine issue when, for example, children (with colons) avoid defecation for days and days. In that context it can lead to encopresis. It has no connection to J-pouchers who empty their pouches multiple times per day. Someone who is physically unable to empty their pouch can also have serious problems, but that’s also not the matter being discussed. Threatening people with dreadful health consequences based on fanciful notions is bullying. Strongly disagreeing with such... [ more ]
Former Member You have disrespected me on numerous occasions, that is the reason I have not been talking to you. There is a way to say everything respectfully and you have been a big bully. I am not going to talk to you until you apologize for your rude behavior. *I have found many reliable sources supported by doctors and factual evidence.* Everything I post has been researched fully and fully supported. I do not post stuff out of thin air. I just refuse to talk to bullies who do not apologize for being ... [ more ]
See all 42 replies...
J-Pouch ForumsHelp! Need advice now!
Liver blood test
winter wishwinter wish
Former Member They do that bull crap all of the time, they are just stupid lol. When I was having asthma problems they kept trying to send me to a pcp instead of a lung doctor. The medical system is stupid lol. And anytime, hope everything works out [ more ]
grandmaof1 I thought so. I don’t understand why they are sending me to my PCP. Thank you [ more ]
Former Member Gastros handle the liver too. Either that or hepatologist . A lot of people see gastros for just for liver problems [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Surgery to remove J Pouch
L Leann
Former Member I totally understand! I am just glad you are doing better overall. It must be hard to have to keep the catheter clean all of the time, I am sure you do an amazing job at it though! [ more ]
BillV Lauren, I would have preferred to keep my J pouch if the high risk of cancer and leakage problems from a weak anal sphincter had not been present. Getting the BCIR eliminated the risk of cancer and the leakage problems and significantly improved my quality of life. I would never have been happy with and end ileostomy. [ more ]
kk I would definitely get a second opinion before making a decision!!!! I have a lot of confidence in the Mayo Clinic. One in Rochester MN is where I had my first surgery and they saved my life. There were others there that were getting repaired from bad surgery other places. I have also been to Jacksonville, Mayo Clinic. Though I have not been to the others mentioned I have heard good things about them. Thoughts and prayers for you as you make this decision. [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
Surgery duration
G Gom
Former Member Let me know how it goes! I want to hear everything! Good luck too hon! [ more ]
Gom Absolutely [ more ]
Former Member Oh wow, that is a cool story! I am glad everything worked out! I bet you are excited for Takedown In Jan!! That will be a good way to start the New Year! [ more ]
See all 17 replies...
J-Pouch ForumsPouchitis
Stress and Addison's
G GerdMüller
GEB56 Hi Gerd. I have a J pouch (2017) for UC and I also have Addison's. I also do sports (or at least keep fighting the good fight to continue kayak and canoe rack g and cycling. I have had episodes of pouchitis for which Flagyl works moderately well. I have fissures frequently with spasms, burning and pain. Addison's is hard to deal with. I get fatigue, muscle spasms, weakness, strange tight dluttering in abdomen, thin fragile skin with easy bruising. At times, the abdominal muscle contractions... [ more ]
JPouch_2016 For fissures, I went to my doctor and they “sealed up” the fissures with a sort of purple type super glue. It was painful, but it helped in the following days. I was prescribed a prescription cream, but I don’t remember the name of it but it did help. Stress is directly associated with pouchitis and many other diseases. I’ve been told that time and time again by my surgeon and doctors. I live in Minnesota, which is prime for healthcare in the US, so I tend to believe them about the Direct... [ more ]
Scott F Gerd, your dose will probably have to be carefully managed for a while, as Jaypea said. If you can’t get an endocrinologist to help then a good internist (Internal Medicine doctor) can probably do it. Good luck with the fissure, too. Those can be very unpleasant, but not as dangerous as Addison’s Disease. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Ever tell anyone at work about your colitis?
A asdfqwer
Former Member I think you should tell them about the brain fog so they will not be hard on you. [ more ]
asdfqwer Thanks for all the comments! I do agree with not telling about the brain fog. I have a unionized gov job so my performance isn't a huge issue but I still think it wouldn't be helpful to share I am struggling with focus. Maybe I can get myself on a low dose of prescription meds for focus. In regards to sharing about UC in general, I may just casually do that piece by piece when the opportunity arises. Luckily I'm only going to bathroom 1 to 3 times a day at the moment but may get worse... [ more ]
Former Member Did all of the comments make you more comfortable about sharing? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Question about old stoma site
DebthetravelerDebthetraveler
Former Member My 6th year anniversary is on Tuesday and I still have tenderness there. If it gets pushed on or if I turn the wrong way it hurts. It has gotten better over the 6 years but in the early years of takedown it was much much tender. Everything you are experiencing is totally normal *Still tender after 6 years* [ more ]
Former Member Dang you are pretty tough!!! [ more ]
GEB56 I am on day 14 now of tender, hard, flutter feeling at site of old ostomy. I had symptoms of a partial blockage with distention and loud churning with pain. It hurts/feels weird at that site when I cough or even breathe deeply. CT scan 5 days ago showed no blockage, but soft tissue "collection" (whatever that means) behind the ostomy scar. I do exercise and some sports and wonder about a hernia. Does this sound familiar to anyone? [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
chron's and pouch
V vince66
Former Member Some surgeons would say yes, but I would definitely not reccomend it at all! Crohns attacks the small intestine and other things and the pouches can become greatly affected. I have heard of some people living peaceful with a J-pouch with Crohns but its not worth the risk. If you need/want surgery get a ileostomy. I know it can be depressing to have a bag, I would know; but look at it as a second chance of life, a chance to have your life back. [ more ]
Scott F Many surgeons won’t be willing to do pouch surgery on someone with Crohn’s Disease. I was turned down by two surgeons based on a very uncertain diagnosis in my case. OTOH some surgeons are more adventuresome, and standards vary from country to country as well. I found a well-regarded surgeon willing to operate on me, but in fairness he convinced himself that I had UC rather than Crohn’s. The outcomes are worse for folks with Crohn’s DIsease, and a failed pouch is no picnic, but if the... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Does anybody else still get PTSD about their "colon suffering days"???
FM Former Member
Former Member Thanks for the replies everyone! I see I am not the only one either. The positive thing is how far we have all come and how we never let our situations beat us! WE ARE RESILIENT [ more ]
Jaydog Ya i remember but i just think how far ive come. My PTSD isnt really from having uc. I didnt even know i had uc. I just got sick one day and a few weeks later i had no colon and a bag. It was a huge adjustment to make in a short amount of time. I was so weak from being sick i could barely put my pants on. It was terrible. Im so glad thats over. [ more ]
Bubba1028 Na, it just think of how good things are now. I some times think of how I can do things now that I could dream of doing back then (ie- go apple picking and not have to worry about being too far from the restroom) and when it got bad, it was the simple things like wall my dog without having an accident. But mostly I just live my life normal like. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Prophylactic, J-pouch surgery - How did it go?
Miss Carole BMiss Carole B
BillV I was fortunate. My doctor discovered a couple of polyps in a sigmoidoscopy and followed up with a colonoscopy. That exam disclosed no additional polyps. A year later, I had significant bleeding when using the restroom and I then had another colonoscopy that disclosed hundreds of polyps and produced a diagnosis of FAP. That’s an example of how fast cancer can progress. Fortunately, none of the polyps were malignant and I got an early version of a J pouch in a 2 step procedure. I hated the... [ more ]
CTBarrister It's exactly why so many people die from colon cancer. They feel fine and do not go for colonoscopies. Look at the tragic example of Tony Snow, the former White House Press Secretary. His mother died of colon cancer and then he died of colon cancer. Despite having UC for quite some time, from what I read he was too busy to have colonoscopy. Very sad end for him: https://en.wikipedia.org/wiki/Tony_Snow I felt awesome and had no symptoms when my stage 3 thyroid cancer was discovered. Feeling... [ more ]
Kangaroo Hi Carole, Yes, my life is pretty normal. I can exercise and work a full time job. I feel the same as I did before surgery. My biggest issue is that I must take 2 Imodium or I will have an accident at night. Also, if I'm going to be out all day, I will take Imodium to slow my system down so that I won't have to empty my pouch as much. I don't think of my j pouch very much. I just got used to the bathroom visits and taking meds and night. I had a terrible time with the bag and it was a long 2... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
rash
K kk
Former Member Sounds like hives in my opinion since you can get it when you are stressed out. I would seek a dermatologist. *Holding in poop* is not good under any circumstances, that has many risk factors. A signal is a sign [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Heat and Sport
Rob McLorinanRob McLorinan
Former Member I am not sure to be honest. I got that name because I am obsessed with, "The Wizard Of OZ" book series lol. [ more ]
Scott F The one disability that afflicts almost all J-pouchers is an increased tendency for dehydration. Under normal conditions most of us do fine drinking plenty of water (or sports drinks), but 4.5 hours of tennis in very hot weather can be dangerous for people with colons, too. The loss of fluid and electrolytes is just too rapid for your body to keep up with. Is there any chance you could switch to indoor tennis? I know that’s not available everywhere, but it sounds like tennis is important to you. [ more ]
Rob McLorinan Is Emerald city in USA? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Safest place for flu shot
B Bubba1028
Former Member Your welcome, sounds greeat! [ more ]
CTB23 We’ll be going to Walgreens on Monday near where I live. I have to get my Shingrex vaccine also. I might just get both at the same time. I had shingles when I was in Rehab after hospital stay due to major flair, but it was caught early and treated right away so it was pretty mild. Not something I want to chance again. [ more ]
Bubba1028 Thanks for your suggestions everyone. I went ahead and scheduled an appt for my doc for early in the morning. They called and said that they have us wait in the car until they are ready to take me in. Usually it’s in and out- super quick. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Possible blockage with bad sphincter
TL TONY LAVICTOIRE
Scott F Tony, I’m glad you got some relief, even if it’s only temporary. I don’t think you need anything more than distended bowel to explain all the pain you can imagine. If you aren’t pooping then your bowel will distend. If you have an abscess then that’s a real issue to deal with, and they can hurt like hell, too, but I don’t hear anything in your description to suggest bad bacteria or even inflammation as important factors here. Pouch folding could operate roughly like a prolapse, and probably... [ more ]
TONY LAVICTOIRE Thanks Scott! My wife took me to UI Health ED on Thursday evening and I was admitted to the hospital the next morning. A CT scan revealed " acute inflammatory changes to the J-pouch with evidence of perforation and abscess formation anterior to the J-Pouch" the abscess was thought to be only 2-3 cm wide. It was also determined that there was no evidence of a partial blockage. But, when the proverbial flood gate opened yesterday afternoon, I finally was mostly free - still tender at... [ more ]
Scott F I’ve not experienced pouchitis that backs things up, so it’s hard for me to feel confident that pouchitis is a likely cause of your current misery. Maybe others here have had pouchitis resembling a blockage? Your wish for a rectal catheter suggests another possibility to me: since you normally use manual abdominal pressure to empty your pouch, and manual abdominal pressure can be intolerably painful during a partial obstruction, maybe you now have a pouch backup in addition to your partial... [ more ]
See all 6 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Can you pee without having a bowel movement?
P Pluot
Former Member That is super cool! I never hear about men sitting down to pee, So cool to find that out about some men! [ more ]
sombrenote I do. Once in a blue moon. About once every few weeks, usually if I have drunk a TON of water and am also in a hurry. You have to concentrate to keep your back door closed while opening your front, but it is very doable. So yes. Men can pee standing up without a BM. It is a thing that happens... not sure if it happens for everyone. [ more ]
twinkie ❤️
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch Surgery in 2 weeks. Advice on prep and post
Miss Carole BMiss Carole B
Former Member Of course, anytime! Let me know how everything goes for you! And thank-you for loving my advice And I definitely, find safe exercises. Some things I do is that I put on some music or a show and dance for 30-60 minutes. Stretching is good exercise and biking/running. We J-pouchers have to take it easy since we are more delicate now, I would recommend keeping it between 30-60minutes. Do you have any names picked out for your ostomy/pouch when you get it? [ more ]
Miss Carole B Thank you Lauren for all these good tips. I appreciate hearing about your experience and love the idea of naming the pouch! I am a big athlete so I hope to find forms of exercise that can be safe but do the trick! Have a lovely weekend and thanks again!! Carole [ more ]
Former Member Preparing for the surgery will definitely recommend talking positively and try to remain calm and relaxed. Think about all the reasons why you want/need the surgery. Looking for a new beginning. Definitely name the J-pouch so you can develop a friendship with the pouch. What to wear: I would wear pajamas to make myself extra comfy lol. There will be lots of pain but its worth it in the end. You will have many bowel movements but its a blessing over constipation. Try to move around as much as... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Other Pouchers Experiences with Loperimide 2m capsules and their gi's compliance hesitance or not concerning prescribing it to slow parastalysis/control diarrhea
DoughBoyInPHL78DoughBoyInPHL78
DoughBoyInPHL78 Ct, glad you understood after the clarification. GI doc does feel that I have built up a resistance to the loperimide and if I feel I was getting benefit by it doing some work in helping he felt that it was just a placebo effect. We ended phone conversation on that after my next forth comming pouchoscopy on October 7th, he might give another medicine a whirl concerning my frequency. My kidneys are well after the recovery of the Aki last summer but I just have accustomed to drink that much... [ more ]
CTBarrister OK thanks for the clarification. And while you are not obligated to pay for over the counter meds that are covered with a prescription by Medicare/Medicaid, you are nevertheless free to do so if you choose. I understand that buying a quantity sufficient to take 6-8 per day isn't inexpensive. It's also a large quantity and way more than what I could tolerate. It makes me wonder if your Doc's concern was really that you have built up a resistance to the drug such that it's not effective except... [ more ]
DoughBoyInPHL78 okay for starters, i am am a medicare recipient and i have medicaid. so silverscript is my part d prescription drug plan. Therefore, Im not obligated to have to "get stuff/meds" over the counter and pay out of pocket with cash when its covered when the doctor writes things on me on a script and faxes to pharmacy. Yes, even miralax for my pouchoscopy prep, its over the counter, however with my insurance i can get almost anything covered as long as its faxed over/called in by the staff or... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
I have partial bowel obstruction.
GEB56GEB56
Former Member I am so sorry! I hope everything will be okay. And okay let me know. Your welcome! [ more ]
GEB56 No Lauren. Terrible. Pain and distention worsening. Much less BM's. Just emailed my surgeon for advice. I live. 1 1/2 hours from the hospital. I am very concerned. This is day 7 of obstruction. Will let you know. Thank you. [ more ]
Former Member Are you doing better??? [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Gyn surgery needed after j-pouch
S susbo
little greeny Was your initial surgery laparoscopic? [ more ]
JPouch2017 Not exactly the info you are looking for but I had a very easy c-section about 18 months after my take down. My first surgery of the three part was in 2017 and it was done laparoscopic followed immediately by a full "traditional" cut open because of internal bleeding. My second was also the traditional cut because of my complications. I had my c-section in the spring of 2019 with problems healing up. Good luck whichever way you go!! [ more ]
hattie I had a traditional total hystectomy a few years after my J pouch construction. It was a good thing my C/R surgeon was also in attendance because takedown of adhesions from the Jpouch surgery was very tricky and complicated. If you suspect a lot of adhesions or scar tissue like I had, I would think the prudent thing to do would be the open procedure. Incidentally, I had my J pouch surgery 5 weeks after a C-section and was not compromised in any was by having the 2 abdominal/pelvic surgeries... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Imodium - Loperamide cost and availability
aka KNKLHEADaka KNKLHEAD
Claudia S Costco's Pharmacy carries a generic 24 pk for less then $1 a pack. Unfortunately you can only buy 1 pkg per day. [ more ]
roseviolet Vitality Medical sells a bottle of 96 for about $6.00. Maybe this will help until Amazon restocks. Rose [ more ]
Safado You may have already tried Metamucil/psyllium husk but I used to take Imodium and ran into the same problem of finding a reasonable price for Imodium. I switched to Metamucil only and it has been mostly a good thing for me once my body adapted to it and got past the bloating stage of adjustment. That said, I've seen generic loperamide (Imodium) on Amazon occasionally at a pretty reasonable price. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Hydration
A Almac
Former Member Defintely agreed! That must have been scary for you since coffee makes you more dehydrated. I am glad you figured everything out. [ more ]
Claudia S I agree with the previous answers 100%, the major scare for me was not reading the symptom signs correctly and just drinking more coffee would help the lack of energy and thinking I was also meeting the daily fluid amount with also including the mixing of water in my Metamucil. Nope, nope. The Doc also reminded me that getting the Flu shot is very important to us, because we could easily end up at the hospital for IV help due to dehydration from Flu symptoms. [ more ]
Former Member Definitely dry mouth, feeling weak, dry lips, and straining. My combat methods are eating salty snacks and healthy sugar foods throughout the day with water. I put salt in my water sometimes though. A lot of fruit juices are filled with electrolytes too, especially lemonade, cranberry, and ORANGE JUICE. V8 juice and pedialyte are great too. I drink water before, during, and after every meal. I have anywhere between 13-20 BMS a day so I have to drink fluids throughout the day or else I feel sick. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Multi-vitamins
JA Joey A
CTBarrister I use the Alive Gummies for Men over 50. There is also an Alive Gummies for Women 50+. Here are links: https://www.walmart.com/ip/Ali...vEAQYASABEgIFpfD_BwE https://www.swansonvitamins.co...2EAQYAyABEgLTzfD_BwE [ more ]
cassiecass Alive for women over 50 Vit d I used chewable Alive .Liquid well taste makes me cringe [ more ]
Former Member Instead of taking multivitamins, I eat cereal a lot. Cereal has a lot of vitamins in there. I have cereal for breakfeast and I get vitamins at the same time. Getting two things done at once lol. I take Iron pills, calcium pills, magnesium pills in addition too though. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Fluttery feeling and noise where jpouch is
GEB56GEB56
Former Member Thank-you! And Thank-you for being soo nice! I wish everybody was nice on here XD and I totally agree! Let me know how things go in a few days. I hope the changes are positive [ more ]
GEB56 You are very kind. Thank you again for tips. We can all learn a lot from each other. Hopefully, a few more days and this will resolve. Take care. [ more ]
Former Member I am soo happy that you got back to me about how everything went down, thank-you for remembering to do so I hope everything gets better! I hope everything passes very well for you. A few tips for preventing blockages in the future that I personally follow is that: I drink water with, during, and after meals; chewing food very thoroughly helps preventing blockages as well, and moving around helps a lot too- but definitely nothing too extensive as that can cause problems as well. I hope these... [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
VSL #3
V vince66
vince66 what is low FODMAP? [ more ]
RHolt Hi Scott---I just posted some info in the general discussion forum about alternatives to VSL#3, since I, too, find it very expensive. I have been trying several approaches to keeping my gut calm and not inflammed: (1) Low FODMAP diet, which has been shown to dramatically help people with irritable bowel syndrome; (2) taking some form of probiotics (I do Nancy's yogurt with its billions of cultures and eat it for breakfast several days a week and I take oral PB8, a capsule with probiotics, 2... [ more ]
Scott F I have used VSL #3 for about 12 years. I think it helped delay my need for long-term antibiotics by about a year, and it still helps me. Unfortunately it seems to work best at higher doses, and it’s very expensive at those doses. At my current dose (I use the double-strength packets) a bottle of 60 capsules would last less than 2 days. Many people use lower doses. It can be hard to tell if it’s working. It’s not a good alternative to Cipro or Flagyl, but it can reduce the frequency of... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Increased Leakage...Stricture responsible? Treatment for leakage?
H hattie
Scott F Dilation of a pouch inlet stricture shouldn’t have any effect on leakage. Heck, I don’t think your leakage has anything to do with that stricture, either, but it could give you trouble if something gets trapped behind it or it narrows further. A dilation (generally with a balloon) is probably worth doing. At the same time, the problem you care most about - the leakage - needs to get proper attention, and not treated as less important than the stricture. It sounds like pouchitis, either... [ more ]
hattie Scott F, I was reading an earlier post of yours about dilation in which you mentioned that treatment for stricture depends on its location. My pouchoscopy report states, "....a relative narrowing at the pouch inlet with inflammation, I can pass it but there is a pop through. I used an EGD scope to do a proper turnaround". What does this imply as far as treatment of the stricture? [ more ]
hattie Scott F, Thanks for your reply. No, I have not asked my Dr. why antibiotics make things better for me, but I will when I see her for my pouchoscopy next month. I assumed it was because I attributed my symptoms to pouchitis and the antibiotics are often used for this. I did not notice any changes after the dilation I had last year, but that maybe because my Doc seemed to imply it wasn't a "major" dilation. Is there a possibility that a stronger dilation would cause me to have more leakage... [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
pouchitis and muscle spasms
V vince66
Scott F The only relationship I can think of is that pouchitis can increase frequency and, perhaps, push you over the edge into dehydration. Once that happens all kinds of trouble are possible, including electrolyte imbalances. If you’re peeing light-colored urine at least a few times per day then that explanation doesn’t apply. And @Former Member will probably you tell you to eat a salty snack, like potato chips (crisps). [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
A year and a half after takedown, my first (maybe) blockage. Owwwwww.
G girlunky
Former Member Are you doing better??? [ more ]
Scott F A blockage from adhesions can happen just about anywhere. I'm glad yours seems to have passed quickly, and most do pass on their own. I do clear liquids until I'm sure it's gone, and then I eat whatever I feel up to. Right upper quadrant pain is sometimes from gallstones plugging up the works, but yours does sound directly related to progress through your gut. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
About Hernia at Stoma Site - Has anyone just lived with it?
NYC GooglerNYC Googler
Former Member Also herniad can lead to blockages. Blockages can lead to death. So definitely get it taken care of ASAP [ more ]
Scott F Marie, your ileus did go away on its own. Nothing the health care team did corrected the ileus. Of course the back-pressure needs to be managed if it gets severe, so the NG tube can be an unpleasant accompaniment to an ileus, but I wasn't suggesting ignoring the ileus. I was suggesting that the temporary problem of an ileus may be less worrisome than the potential complications of an untreated hernia. [ more ]
TE Marie P.S. If possible you might want to get a second opinion. @Scott, I felt like I was dying and don't think mine would have gone away on it's own. I've had obstructions before and made it thru. With the post op ileus they sucked stuff out of a tube from my stomach thru my nose for several days. You are a better man than I am if you suffered thru that on your own [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Anything comparable to Ilex??
PouchomarxPouchomarx
Bubba1028 Ryan- triple paste is more of a cream than a barrier paste. It’s meant to with diaper rash, but it works for me. [ more ]
Jfill21 I have yet to find a decent alternative. I found and tried Medline’s Z-Guard Paste because it’s primary ingredient—like Ilex— is white petrolatum. But does not dry like Ilex. I finally asked my doc for a 90-day prescription of Ilex even though not covered by insurance. However through CVS I got the price for 6 tubes (90-day for me) below $18 per tube. Still expensive but $4 less than amazon. [ more ]
Ryan138 Bubba.. have you tried ilex paste and if so how does it compare to triple paste? [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
JPouch or Ileostomy
DK Doug K
rrip I'm glad you had a J pouch constructed because you owe it to yourself to find out if it works for you, and I bet you'll be glad. With the difficulty I've had with mine, and I've had plenty of discomfort in the 2 years since takedown surgery, my j pouch is still far better than the bag that I had for 4 months. It's given me a real appreciation for the surgeon's skills and of the human body's incredible ability to adapt to a surgery of such magnitude. I'm certain you will not regret the j... [ more ]
Former Member So happy to hear you are okay. I hope you do well the with temp loop ileostomy! If everything goes well with it, you have the option to keep it or get connected. Some people choose either or, and some choose to get the other surgery down the road or not all. Whatever you choose is great! [ more ]
Doug K Yes - I got home yesterday [ more ]
See all 20 replies...
J-Pouch ForumsHelp! Need advice now!
Battling Dehydration
I Iona
Former Member Is it actually dehydration. Are you associating symptoms fatigue with dehydration. The easiest method of monitoring hydration levels is by the colour of the urine and how often you pee during the day. Ideally urine should be a pale gold/straw like colour and you should be pee’ing, no less than 3 x per day. I find symptoms that I’ve always associated with dehydration, such as fatigue/tiredness, headaches and lack of enthusiasm, are quite possibly, either a salt or sodium deficiency; I think,... [ more ]
Doug K Dehydration is a problem for me as well. I have tried some powders like “liquid IV” and “Drip Drip”. It helped me. [ more ]
Former Member Sometimes migraines come from dehydration so I am not sure if it will clear up. When I get migraines, I take Naproxen. It does wonders but J-pouchers are not suppose to take it because it can irritate the pouch, I do take it with food and that helps. I am not sure if that completely eradicates any side effects with the pouch though. That is the only thing that works for me though. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
.
FM Former Member
Former Member Totally understand!!!! And wow cool! With a nursing degree, you can always work in gastro offices. And I would probably do something with animals. Humans are too mean lol. [ more ]
Former Member @Former Member Yeah I know that feeling! Every quarter/semester has hit me with something: hospitilization, surgery, etc. Had to drop a couple quarters just cause I was so sick I couldn't do it. The pandemic has actually helped in that regard though. A lot of the classes are doing stuff online, and for the science classes with alternating virtual lab weeks where we don't have to go in. You should think about returning if they keep doing classes this way, but you know what's best for you. I'm... [ more ]
Former Member I was going for the AA. I am halfway there currently, but I stopped going to school a few years ago. I am just taking time off because it was not making me happy. I was in it on and off because I got sick around those times. Everytime I went back something always happened lol, so I am just taking a break for a while. What about you??? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Low Lymphocytes and feeling very irritable and agitated plus itchy rashes on legs arms wrists
LinzalishaLinzalisha
TE Marie I developed an intense itchy rash that comes and goes after my surgery last October. It would itch and have a raised red rash that when disappearing a few days later turned into a bruise. There would be several locations at a time too. My internist put me on Zertec and sent me to a dermatologist. The dermatologist examined me, when of course none of the rashy spots were active, and said it was hives and could be caused by a thousand things and gave me a prescription for some cream. Fast... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
New loop illeostomy sucks!!
J Jaydog
Former Member @Former Member As a j-poucher, I recommend you to google "j-pouch mesentery", in addition to "mesentery" alone. [ more ]
Former Member You have still been through quite a lot, sorry to hear that. I am glad you are doing better now though. What is mesentary??? [ more ]
Former Member @Former Member It did not retract a lot in time, it was retracted into the skin from the first day. I am a normal weight person, so it cannot be due to reach issues. It looked like it was by design. Maybe they did not want to make a large cut on the intestine and maybe they did not want to cut the mesentery to pull it out a lot, maybe to make their life easier during the final surgery. The surgeon would know why. [ more ]
See all 24 replies...
J-Pouch ForumsGeneral Discussion
Emptying bladder harder with J Pouch?
G girlunky
Former Member I am a woman but for me its opposite, everything comes out much easier with everything working together and being relaxed. Maybe you should see a urologist before things get worse. Definitely do not wait until its too late. It could be nothing but having set answer gives a lot of peace. [ more ]
Scott F Usually standing, but also seated. Even if my pouch is full I think it’s useful to me to maximize whatever skill I can develop in keeping the functions separate, but I’ll sit down at those times. More often my pouch is less than full and I’d prefer to delay pooping until it’s properly necessary. As a male I stand at those times, but the idea isn’t gender-specific. [ more ]
Mark234 Scott thanks for the quick reply and thanks to all your answers on other topics it was a big help to me the first few weeks after my reversal i didn't have it easy and this support group gave me relief. When you say you can pee without pooping is that standing or also seating position? that's when your bladder and pouch is full? [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
Jpouch specialist recommendations Los Angeles area
Mhg26Mhg26
Former Member Definitely do not be afraid to travel far if you have too. Go as far as you need for your health. Your health is priority. [ more ]
Mhg26 Thanks Scott! I didn’t even consider C. diff infection but I guess it could be. I went to an urgent care and gave a stool sample to be tested for any signs of bacterial infection. They also considered it to be a possible COVID-19 infection that may be presenting itself in a different way than most experience so I was nasal swab tested for that as well. Today will be 48 hours later so I’m just waiting for any test results at this point. Hoping your body has treated you kindly lately without... [ more ]
Scott F You might have one of the longer-lasting GI infections, like C. diff. I don’t have a doctor recommendation for you, but I agree that you need one. [ more ]
See all 3 replies...
J-Pouch ForumsOstomy & Skin
Parastomal Hernia
F Fosty
TE Marie Sorry Frosty, I just noticed your post. Maybe you need a second opinion. Good doctors do not care if you get one. I had my surgery at Mayo's by the surgeon that removed my j-pouch. She had to go through mesh and scar tissue/adhesions of which she worked on. She worked longer on my adhesions than she did on the hernias. I bet she is tired if seeing my guts! 4th surgery she's done. I wouldn't want to move my ileo to the other side either 😣 I am so sorry you are going through this. Does your... [ more ]
Former Member Sorry to hear about your suffering, where do you think your hernia came from? Doing specific exercises or extensive stuff??? [ more ]
Fosty Hi there! Sorry so long for reply. I had the surgery Jan 8th but unable to do laparoscopic or mesh do to scar tissue. Hernia is back ugh and worse. Saw surgeon and trying another with just mesh on top. She said could go 50/50. The only other is moving stoma to the other side which is much more major surgery she said. How are you doing and have you had many hernias and know anything about changing to the other side? Hope you’re doing well. Lynn [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
1st time blockage
K Krissimay78
MikeEJ34 Hey! Thanks for your reply! Based on CT scans and symptoms they believe there’s no true small bowel obstruction and has had him on an all liquid diet. They believe his appetite will return sooner than later, as right now he doesn’t have much desire to eat at all. At one point he was VERY nauseas and wanted to throw up (that combined with “10 out of 10” stomach cramps landed us in the ER. However, since going to the liquid diet, he’s been ok. I’ll certainly get a list of foods they believe he... [ more ]
nikiki Hi MikeEJ34, So sorry to read about your Dad. I’d get recommendations from the jpouch doc re/ foods to eat based on what they found to be causing the issues. Did they find an obstruction? Or possibly the medical team is making a logical assumption based on symptoms? Best of luck to him in his healing. [ more ]
MikeEJ34 ❤️
See all 26 replies...
J-Pouch ForumsHelp! Need advice now!
Backing: Pooping in the Woods
ikebuddyikebuddy
Scott F A treadmill on a steep incline works, too. [ more ]
CTBarrister It would not crush me to "leave my ego at home" if I were alone. But I would probably go with my girlfriend, and she is younger than me by a lot, fit as a fiddle (rock hard abs), and full of energy, if not bursting with it. To turn back halfway up would be an admission of wimphood while with my lady, which is not going to happen. We did a recent trip to Maine together, and her energy level was overpowering, but also uplifting and raised my own energy level. I had to stop drinking in order to... [ more ]
Scott F “Willing to walk 4 miles on a waterside trail” is probably well above average. Average is more like “willing to binge-watch Netflix for 4 hours.” Nevertheless, uphill is a different thing. You do have all winter for conditioning. How do you feel about a Stairmaster? Also, I really meant it about leaving your ego at home - the desire to get to the summit can exert an irrationalizing force. [ more ]
See all 13 replies...

Join Us!

Founder, Creative Director & Web Master

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×