Former MemberDefinitely space it out at least 2 hours. [ more ]
Scott FYou might be able to get your insurance company to cover the prescription strength. I was successful, albeit after a year-long fight. [ more ]
Pouch2021Thanks, 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 ]
Former MemberI am vegetarian and I stick with 60 carbs most of the time. [ more ]
Scott FI’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 ]
Pouch2021We 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 ]
Former MemberI never knew a stoma could prolapse!! I learned something new today. Have you told everything to your doctors??? [ more ]
Scott FI 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 ]
Jan DollarYeesh! 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 ]
maddie18No, 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 ]
Wifethank you for your feedback. One quick question - is your fiance on any meds? Hormones? chemo tablets? thanks! [ more ]
maddie18Hi 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 ]
RondaCI buy Triple paste in the baby section at Walmart. I love it. [ more ]
Former MemberThat 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 ]
PouchomarxCUZ 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 ]
Jan DollarI 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 ]
Jan DollarSarah, 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 ]
Sara14Grilled romaine sounds amazing! Romaine is the lettuce I usually buy for my salads. [ more ]
CTBarristerI 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 ]
Jan DollarThis 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 ]
Jan DollarGrace, 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 MemberI 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 ]
Jan DollarPouch2021, 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 MemberDrink a lot of water when you wake up! That always helps me in the morning [ more ]
Bent-ArneCould have been im gonna ask next time i meet with my gi. We don't have these words in Norway, so he might have already mentioned it, but with some other words 😂 [ more ]
ColonGoneGirlThey’ve said I have two things , one is when the original surgeon did the temporary ostomy he ADMITTED he “didn’t pay attention to that since it was temporary so I didn’t spend the time on it” (don’t even get me started with this nightmare! His nurse and staff were literally SPEECHLESS) so it would open up burning me daily (I couldn’t look at it , I had a nurse come daily sometimes 2x to change it and she said “in all the years of changing these I’ve NEVER seen one put on so badly Or... [ more ]
Pouch2021Do you know if pouch strictures (usually narrowing at an anastomotic site) or small bowel obstructions are the issue? It sounds like you’re talking about SBOs from your post. I was plagued by recurrent SBOs during the 6-7 months with my loop ileo (had one severe with my end ileo before that but that end ileo was Overall so much better). Developed an obstruction every week it seemed with the loop. The times I ended up in the hospital for pain control and decompression with NGT, my imaging... [ more ]
tfI can tell u that I'm on a antidepressant; it's a very low dose. My dr advised me it's like a maintenence drug. This disease can & will run u down physically & mentally. I have a Jpouch, in the beginning years it nearly took me over the edge. I believe in meds, definitely to relax me when it's a really hard day & night. I take vitamins too. Find a diet that fits for u & exercise is a must. Even at that it's a struggle but liveable. Best wishes & know this group is a life... [ more ]
ddIt sounds like you’re doing all the right things. I have dealt with similar issues. It sounds like you might be suffering from depression, which can cause extreme fatigue. An antidepressant may help. I was initially reluctant about taking anything, but I will say that it has saved my life. It has helped me deal with this incredulous disease. Good luck to you [ more ]
Former MemberI am sorry you are unhappy! If you ever need someone to talk to, message me. [ more ]
CTBarristerFrancesca, Although I take Remicade and never experienced ANY side effects from it, a buddy of mine who takes Humira for both Crohn's and AS reports that he feels the fatigued the day of. I think it's just temporary in his case though. [ more ]
ddI had similar symptoms within the first couple months but have now subsided. Luckily I do not have any issues since then. Good luck to you 😊😊 [ more ]
Former MemberOkay, let me know how Humira works! [ more ]
Former MemberThanks hon!!!! I needed to see this! [ more ]
rosevioletHere's another tip that might help those who have sleep issues. The advice I heard is to get ready for bed a couple of hours before going to sleep. The bright light in the bathroom while brushing teeth etc. makes your body think it's daytime again and wakes it up. Avoid bright light of any kind, including electronic devices for at least a couple of hours before slumber. [ more ]
Former MemberIschiorectal abscess and/or Fistula. It’s been over 7 years since J-pouch creation. Recently, one trip to ER, followed by two consecutive out patient surgeries within two week time frame in efforts to locate and drain a badly infected abscess or fistula; Seton installed to allow complete drainage. This is my first experience with this, I’ve had enough pain in my rear for a lifetime just in this last month. Hoping this will be a single event as I am on the mend now, however, will have a final... [ more ]
Former MemberYou are welcome! Glad you are doing great [ more ]
Danr11Thanks, both of you. This has been very informative! Luckily I have had an MRI done recently, and currently I am abscess free. My doctor is monitoring it closely and is happy with continuing the Entyvio treatment. [ more ]
Jan DollarSounds right to me. I mostly wanted to pass on that getting the standard antibody tests that are available to everyone to see if you have been exposed will not tell you about vaccine effectiveness. Jan [ more ]
ytcrockpotThe only way to find out specific number of antibodies from the covid vaccine is by being in the research study groups. That’s what the research doctors told me. [ more ]
Jan DollarPotassium and magnesium are minerals, not vitamins, but that is just semantics. Hopefully you are supplementing based on your doctor’s recommendation. As you already know, potassium is critical for the electrical conduction of your heart, and overdoing it can stop your heart. If you have issues with internal scar tissue, you are better off avoiding high fiber foods and supplements. You should slow your gut with loperamide or lomotil, but only to the point that you absorb your nutrients... [ more ]
Former MemberThere is a woman on here and her name is MARZ, definitely ask her that question and she will help you [ more ]
therealstingerThanks for the replies, info, My fluids go thru very fast alright. Im afraid to slow it too much as I have intestine scar issues were they put it back together. Had 2 other surgeries for scar tissue. So Scar tissue is an issue on slowing it down too much. Fiber blocks me up . [ more ]
Former MemberWhen I first arrived here, it was confusing as heck!!!!! I got the hang of things by learning and staying on here and finding my way. My advice is that everything new takes time, I am sure you will get everything with time. That is how I did it lol. [ more ]
SteveGThe login (or your profile if you're already logged in) is in the upper right corner. That's where you also can "sign out". As long as you don't log out or delete your cookies there doesn't seem to be a limit for login time. [ more ]
Former MemberWater would usually clear up any anal pain I had and not over eating and getting enough fiber. I am not sure if that would help your case though. I am sorry you are going through all of this!!! We all have our trials and tribulations unfortunately. I will keep you in my prayers! I would definitely express all of my concerns and pain to the doctor and see what he says. Keep us updated and I hope you get better my dear [ more ]
JaydogYes it all heals over time. After my takedown I was constantly worried because it seemed like every few days I'd have some new weird feeling or symptoms. Then as soon as I started worrying about it they would go away and something new would start. My advice is give it a few months and don't sweat things to much. It's a huge change to your body and it takes some time. I'm about 6 months past takedown and I feel great. I work out every day and do what I want. It wasn't this way when I was 10... [ more ]
New577Takedown plus 10 days. it’s been tough trying to regulate my body. I got no sleep sat night, diarrhea all night long last night, ate last meal by 500 pm and slept most of the night my question is. The area by the osteomy takedown is always in pain. I swear I can feel the stool and gas passing thru the surgical area at all times. I cannot take bentyl for other reasons. Does this heal over time or do I need another anti-spasmodic and any recommendations ? [ more ]
skn69Thank you Jan, You are absolutely right, my 'special' status or condition as medical abnormally is rather trying. I feel like an idiot when I have to recite my medical history to a new doctor. I will keep up the good fight and go back to my specialist for the 'next step'...yes, I also thought that while they were in there that they should have done a liver biopsy but there was no mention of it in the report... Maybe I should just lay down arms and accept that this thing is part of me...and I... [ more ]
Jan DollarSharon, No news is good news, right? Well, not so much when you are looking for answers. I have to ask. Didn’t they do a liver biopsy, or is that going to be the last resort after this procedure? Ages ago they would do a liver biospy practically on a whim. But, it is not risk free, even with using the fine needle to reduce the risk of hemorrhage. In the end though, sometimes it is the only real way to determine what is causing the inflammation. Of course, even with the biopsy you can wind up... [ more ]
skn69So the test was last Friday and as always I overdid it within hours of getting home...I had no pain and no discomfort so of course the next day I cleaned my house, worked, ate etc...Sat night I felt like a freight train had hit me. Horrific night of pain, gas, discomfort, punching in my guts...you name it...at one point I thought that someone had kicked me in the liver and lungs with Jack-boots. I was exhausted and worn out...it took 2 more days to recover. I should know better. Even when... [ more ]
skn69Fredz, I have had a K pouch for 42yrs (a continent ileostomy with a permanent stoma (very tiny)). Around 2008 I started to get peristomal hernias. I had them fixed from outside--in and inside-out. They even moved my stoma twice. In the end, I required a mesh repair but that was because I needed to keep my stoma. Yours will be closed so it is a different story. There will be less strain on the zone (I think...Scott and Jan please feel free to correct me if I am wrong here!). My big mistake... [ more ]
Jan DollarFredz, the info you got from Healthline is correct. If a hernia is present, they can repair it at take-down. But, mainly, only surgery can fix a hernia. There will be a scar, but it will improve over time. While the stoma is in place, obviously you should not strain your abdominals. Like Scott mentioned, discuss all this with your surgeon. You will need to be careful in the post op period after the j-pouch surgery too. There are many athletes with a j-pouch, so no need to stop your focus on... [ more ]
Former MemberI would not try slowing down your poop until you see how things go first. Take it easy. I was on a low residue diet for a while, and I was on low fibrous foods I believe. Drink lots of water and watch your hyrdration! Drink before, during and after every meal. [ more ]
Former MemberYour welcome dear! Let us know if you need anything, were here to help Congratulations on Take down hon [ more ]
Morgan HubbardThank you all for your help here! I'm now a week out from my takedown and I've had some setbacks (debilitating but temporary gas pain, mostly) but I'm trying to eliminate some FODMAP foods in the short term to tamp that down. I installed a bidet pre-takedown and got some calmoseptine, and I'm keeping up the same Metamucil regimen I was on when I had the ostomy. Butt burn seems minimal. I really appreciate all the helpful thoughts on this thread! I've been dreading the process of getting used... [ more ]
Scott FI just meant that rushing a bathroom trip (for me) means I’ll probably have to go back and finish up. Not a huge mistake, just an inconvenient time-waster. [ more ]
Sherry24Thanks for the replies! Scott F do you mean a mistake as in extra bathroom trips and lots more gas? I just HATE it!!! [ more ]
AimcGlad all's going well Andreita. I'm with Jan, sometime it's more trouble than it's worth. Aimee [ more ]
Jan DollarLet’s not jump to conclusions here by implying malpractice when we do not know all the circumstances. Not taking sides, but there can be conditions present at the time of the first surgery that we are not privy to, like the condition of the patient. An example is a poor mesenteric reach. Plus, sometimes people assume entering into litigation is like ordering a pizza, fast and simple. But, it can go on for years, drain your bank account, and consume your life. A poor outcome does not mean... [ more ]
girlunkyHi JoeJoe, I have a numb area on the skin of my left upper thigh from my first surgery. My friend who is an anesthesiologist said that this happens during long surgeries from pressure. He said I'd "get used" to it. I've never regained any sensation there. [ more ]
Former MemberOh wow, I am so sorry to hear that Joe! Usually the three-step surgery is more safer for men and reduces the risks of nerve damage in the reproductive organs, I am sorry to hear all of that! I hope everything gets better. Let us know how things go in July. Where my takedown scar is, I have less feeling there than before, I guess that is nerve damage? [ more ]
ytcrockpotI’m so thankful I have 2 great doctors, gastro & pcp that are concerned for my health and the expense that it costs me. [ more ]
Jan DollarWithout getting this thread further highjacked from the original question, I just need to point out that all of these variables surrounding invasive procedures and how to control the cost to patients are complex and not a given from one person to another. I have the same complaint about doctors who push brand name medications because they get kickbacks (not permitted at Kaiser) and patients wind up with higher copays, assuming they must have that fancy new drug. Most of us are not lawyers or... [ more ]
PortiaI did quite a bit of business travel for years after my takedown, often traveling with coworkers and clients. What worked for me was sticking with food I knew I could tolerate (learning the hard way that road trips are not the time to experiment with new foods), eating lightly, avoiding alcohol and desserts when others are indulging, taking Imodium, and being totally shameless about asking for pit stops. Good luck! [ more ]
grandmaof1My cuffitis I do Anucort HC suppository after the BM in the morning and Canasa suppository right before the bed. I completely understand your pain. It hurts so bad that tears run right down your face. The GI doctor gave me lidocaine ointment for the burning anus. Please keep us posted and good luck. And do watch what you eat. And be on the safe side and eat light and mild items. Good Luck. You have my support. [ more ]
Jan DollarJust wondering. What is special about Greek yogurt in the case of cuffitis? I have never heard of this before. I have only heard about yogurt with active live cultures as being beneficial to the gut, and even that is not a strong link. It is a very healthy food though. Jan [ more ]
Former MemberYour welcome dear! Make sure its Greek Yogurt though Definitely still reach out to Gastro though [ more ]
Roni*Lauren of Emerald City: No Alcohol TF: The whole point of making 24 hour fermented yogurt is it takes that long for all the lactose to be used up. Lactose intolerant people can eat it. Andreita: The store bought yogurt does taste different. I'm guessing maybe because it is made with whole milk, so a lot more fat in it. Thinking about going back to making my own again for that reason. I did find the Dannon Whole Milk yogurt I usually use in the next town over from me. I use 1/2 cup of that... [ more ]
igotanewlifeHey! I started off with calmoseptine but for some reason my body had a reaction... I found the combo that really got rid of my butt burn. Metamucil to have more formed bowl movements, bidet to wash everything off and minimize wiping, and vaseline. Good luck! [ more ]
rosevioletCitrus burned on the way out so I took a dose of antacid like Maalox when eating it. Peaches, pears and other fruit didn't bother me at all. [ more ]
Former MemberI heard on here milk helps with spicy foods, so that might help. But honestly, maybe your not meant to eat citrus foods. I know I cannot have raisain bran because it hurts me with gas, some things are just meant to be hon. Try milk and if that does not help, I would let it go. [ more ]
grandmaof1Canasa is Mesalamine in a suppository form. Sorry I didn’t add that above. I’d try that before I tried Biologics. Those can really effect other parts of your body. And the Mesalamine enema isn’t strong enema and really doesn’t work. I truly feel he needs the Canasa. It’s amazing. [ more ]
grandmaof1Has he tried Canasa Suppository? I do hydrocortisone suppository after the morning bms. I’d find out about Canasa. It goes directly to the area and it works all night long. It has been a life saver. And I also fight cuffitis for years. The pain is so unreal. I’m so sorry. [ more ]
Former MemberI was scared the balloon would damage pouch to since it hurt so bad, they blew up that dang balloon so big lol. Good luck on Friday!!! Check in [ more ]
New577I had the the pouchogram about 4 weeks ago. While it was very uncomfortable, I would not call it pain. Just a very full feeling down there while you are turning left side to right side as they are shooting lots of X-rays. the tech took pity on me and held the catheter in place instead of inflating the balloon. I was scared that the balloon would damage the pouch. best part was when the young radiologist popped her head out from behind the booth and stated , ok no strictures or leaks, you’re... [ more ]
skn69Hi Tamtam, I am an unconditional of vaccines. After catching the worst flu of my life at age 23 (and I had a k pouch by then) , dehydrating, sick as a dog and bedridden for 10 days I decided...never again. I've taken the shot annually ever since. $6 versus hell was a no-brainer for me. I got my covid vaccine as soon as I could. My 2nd was last week. That said, I never had a bad reaction to a flu shot. I have lots of allergies but fortunately, not to them. My S-in-L (85 and severe asthmatic )... [ more ]
StardustThe covid vaccine is different from the flu shot, and doesn't work with an inactive virus but with mrNA. I found this article very helpful; https://www.thelancet.com/jour...rticle/PIIS2468-1253 (20)30295-8/fulltext [ more ]
skn69Hi Katt, I am so, so sorry...this is a nightmare inside of a nightmare. Without going into too many details, I have a K pouch, the ancestor of the J pouch and the big cousin of the BCIR...it is a continent ileal pouch. I have a tiny stoma that is flush with the skinm very low on the abdomen...I cover it with either an oversized bandaid or a folded kleenex. I use a catheter to intubate and empty my pouch anywhere from 4-8xs/day...most often in under 3 minutes. The process in 100% painless. My... [ more ]
Former MemberI am sorry you are going through this! This is what I would do if I were you: I would talk to another gastro or surgeon (second opinions) about my issues and see if there is anything they can do, if they say there is not anything out there to try, I would get an ileostomy or the K-pouch at this point. Hope things get better for you Keep us updated [ more ]
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
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