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J-Pouch ForumsPouchitis
Alicaforsen; new drug for chronic pouchitis
RD Rick Deutsch
CTBarrister This link does not appear to be working for me. I did read some information suggesting this drug is made in an enema format and has been successful treating pouchitis in trials. The mechanism of action is described as inhibiting white blood cell adherence, migration and activation - basically a switching off of the inflammatory process enabling tissue healing. [ more ]
See 1 reply...
J-Pouch ForumsK-Pouch Korner
Soreness when removing catheter
L lindak
JaniceM Linda....I have had my KP since 1981 and I never had a scope until 2008. It found is that I have a stricture (constriction) at the base of the valve. It can cause my cath to pinch and get "hooked" when trying to pull it out. I have to breath and wait a bit to then gently pull it out. I don't know where you are located but I have a great GI dr (Dr Abousaif) who can scope KPs. And, we have 3 continent ostomy surgeons in So CA. Did you already go in? Any update? [ more ]
lindak Thank you to all for your suggestions. I will give the new catheter a try--and also the suggestion for the olive oil. Sometimes I notice resistance when removing the catheter when there is something stuck in the holes at the end of the catheter--I don't recall having that issue before. Otherwise I don't have any other problems, so I'll ask if a scope is necessary. I did get photos from the scope and that showed the location of the bump way back when. Thanks again. [ more ]
vanessavy My stoma always hurts when I pull my catheter out, mainly the last 1/3 inch before being out. Feels like a nerve though so I think it is that since I don't see anything or feel anything if I have my finger in there. Scopes show nothing either. [ more ]
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J-Pouch ForumsGeneral Discussion
Leakage
M Mark01
KeepFighting(Manny) The reason I chose citrucil was because it causes less gas then other fiber supplements. It thickens the output and I can normally sleep between 6-8 hours with my regime but of course if the pouch calls, we gotta listen and cooperate right? Have you thought about trying metamucil wafers? I tried these and they work as well.. A lil pricey (thats mainly why I stick to citrucil). [ more ]
KeepFighting(Manny) The alarm always works, last meal of the day try to eat something thick last like peanut butter, don't eat at least 4 hours before bed, Immodium before bed and try not to take too much fluids at least an hour before bed and as a last result you can always result to female pads or adult diapers to eliminate the mess anyway... I thought I had a problem too with muscle sphincter damage and begged and pleaded with the Dr to check... So they did and I was 100% fine... It is a great sign that you... [ more ]
Mark01 I've mentioned to my doctor about the muscles but he seems to be think it's something else. I just woke up after a 7 hour sleep without leakage for the first time in months! I had 4 Imodium before bed (even though I've tried that before) [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Early pregnancy, swollen fistulas
K ksmarisa
Living ❤️
KabbyBake I found out in June that I was pregnant during my prep work for "exploratory" surgery. I still had the surgery just had to be awake for it. They thought it was the gland like you, but realized it was a fistula. My surgeon put in a seton for the duration of the pregnancy to keep me from having to be on the antibiotics. I has swelling and bad inflammation in the fistula until I started eating according to the Paleo diet. The fistula can't heal closed because of the seton, but its not bleeding... [ more ]
ksmarisa Thank you Jan and na for the responses. I saw the GI NP today. She was very helpful. She ordered lots of bloodwork, including folate, vitamin d and b12. My hcg has also continued to rise well. My White blood cell count is elevated. Between the NP and OB, they have started me on augmentin 875/175. For those who have taken augmentin what is considered a low dose? I'm so nervous about this... Any thoughts and experiences welcome. Thanks so much! [ more ]
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J-Pouch ForumsGeneral Discussion
apple cider vinegar???
PouchomarxPouchomarx
dgloria5 Suebear,good to see your still coming on. Where's Kathy and connie and the old timers? I hardly come on myself as I don't have any pouch issues so am not much help to the ones that do. [ more ]
vanessavy Turmeric extract is for inflammation. Also Good for many other things. I use it for polyps. I use apple cv for heart burn. Knocks it out. [ more ]
skn69 Some people say that it is good for the mineralisation of the skeleton...don't know if it is true but I am sure that we can google it! (I use lemon juice for the same thing...its the acidity that does the trick) Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
pain from adhesions, treatment options?
BH Bama Hiker
KiwiPoucher Hi There, Your symptoms do sound similar to mine. I have just posted about my adhesions from which you will see there are risks involved with having them removed. I only undertook removal because my bowel ended up being blocked every time I ate any solid food and my intestine was permanently distended and painful. My advice would be only have surgery as a last resort. Good luck. [ more ]
Jan Dollar Even if it is due to adhesions, if your symptoms are relieved by taking Librax, mo betta! In addition to relaxing the gut so it is not trying to force something big through something small, anxiety can definitely increase the whole scenario. So, staying calm is a therapeutic thing too, not just for keeping you from bugging your doctor too much (just kidding)! Jan [ more ]
Bama Hiker Thanks for your concern and feedback. I saw my GI Thursday, and he thinks that I am having spasms and cramping in my stomach and small intestines. I had noticed my belly feeling tight all the time. He didn't rule out scar tissue, but wants me to try Librax for a month. This works by relaxing the muscles in the stomach and intestines and helps to reduce anxiety. I wondered if this was a little in my head. I guess it is easy to do that when you think the next pain you have is going to lead to... [ more ]
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J-Pouch ForumsGeneral Discussion
Bypass Flow Into Pouch/Re-Route
13 Years & Counting13 Years & Counting
13 Years & Counting Thanks for your replies. Scott: I don't know the exact number of times the surgeon has done this but I know it's a good amount based on the discussion today. beckysmom: Thanks for letting me know your daughter had this done. I saw your post to my other post in the advice section & commented before seeing this. Your help is very much appreciated! [ more ]
beckysmom My daughter had this done. She had a stricture at the inlet to her pouch that had been dilated many many times and also a very large ulcer that bled ALOT and she required transfusions. So after trying to keep from having a major surgery she finally had no choice and her surgeon moved her inlet from one side of the pouch to the other. [ more ]
Scott F I've not had this done, but I'd strongly recommend asking the surgeon exactly how many times he's done that procedure. I'd be surprised if you liked the answer. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal fistula help
J jeane
jeane I just got a script for percoset. I have not taken it yet as the rectiv seems to really be helping. I cannot take any more recital meds at the moment as I really think they were making things worse. Glad to hear you have found something that is helping you also. Ill post after the MRI. I'm on 1000 mg of cipro and plan on staying on it until after the holidays. I just wish I could get off this medicine as I worry about long term side effects and it loosing its effectiveness. [ more ]
TE Marie Jeanne, I'm still taking Norco 10/325 for pain daily up to 4 times daily which slows my system down as well as helps with abdominal pain. Have you ever taken any pain medication for cramping? My Internist prescribes it as she sees me at least 4 times a year and my GI is fully aware that I am taking it. I usually end up taking 3 per day but on a good day take 2 on bad days take 4 and wish I could take more. I also take dicyclomine during bad cuffitis flares, where I'm using anucort... [ more ]
jeane Thanks Te Marie I have tried both without any success. I will try again. It seems without the cipro I tend to also get that nasty cramping and pain and increased movements also from the chronic pouchitis. At this time after being on them almost consistently for three years my Gi snd I discussed staying on and getting too least dose posdible which hopefully will be 500 mg a day of cipro with pulsing days. At least that awful throbbing Amal pain is better. Thank you for the responses. [ more ]
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J-Pouch ForumsK-Pouch Korner
Gurgling
amosamos
vanessavy I am very loud, if I eat dairy, sugar or carbs it is worse since bacteria keeps forming. I take ativan nightly and it doesn't stop mine. You might have bacteria overgrowth or just gas. Mine hurts when it gurgles so it sucks. Immodium has helped me a lot lately for it. [ more ]
skn69 I'm sure that I am noisy but I don't really notice it after all of these years....it is just part of my life and, well, as my late sister-in-law used to say...Everyone has gas. Own it and enjoy it...turn it into a contest if you can...who can gurgle louder???? Just don't let it bug you...life is to short. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
What to tell her?
Mental KaseMental Kase
TE Marie All's well that ends well (I couldn't resist.) I didn't know all the facts and now am so happy you've found such a caring lady! [ more ]
Mental Kase Some nice conversation took place and she seemed pleased to be entertained by the odd anatomy of it all. Like Sharon said, a bit of prep helped. Lots of water and some irrigation. Full cooperation of the Pouch (which is rare for me) made for a good experience, not too much mess and it was pretty dilute so I was happy for that. We did discuss how I felt when I realized that I'd lost an entire erogenous zone. At time of surgery, way back when, I hadn't thought much about it since I had no clue... [ more ]
TE Marie Congratulations I'd just say no as suggested above as you have enough problems with your pouch and she could actually do some real damage. You don't need to tell her that, it's none of her business plus you don't want her to feel like you don't trust her etc. Who knows, she might actually be relieved and was just open to the idea [ more ]
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J-Pouch ForumsGeneral Discussion
where will my ostomy supplies come from?
TheRealBrettTravisTheRealBrettTravis
TheRealBrettTravis Thanks for the all the good info, everyone. I really appreciate it. [ more ]
CTBikeBoy You can also order free samples from the manufacturers (i.e. Convatec, Hollister, Coloplast). Go to their websites to find more information. I was able get through the 1st 1.5 months on nothing but free samples. Good Luck!!! Brian [ more ]
TE Marie Make sure you try different kinds and even brands if necessary if the first one doesn't seem to fit you right. It is going to feel weird and it won't hurt to try a different kind. There are some with belts that seem weird at first and I ended up liking that kind the best. The reason I suggest this is whatever kind you pick out you will probably be stuck with after you leave the hospital. [ more ]
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J-Pouch ForumsPouchitis
Stable but getting worse
AllyKatAllyKat
AllyKat Thanks Willow, my insurance detectable has not knocked in yet so it cost me over $500 at Costco for 15 days. How long r u on it? I see my doctor Monday but read some doctors feel it's safe long term and some no? Oh, I started drinking Kefir along with my probiotics. [ more ]
Willow Hello all, I read your posts all the time, but never post myself. I wanted to share this with you. I have tried all the antibiotics and even tried a fecal transplant (unsuccessful, I did not have the muscles to hold the "transplant"). I have recently found two things that have helped: budesonide (generic entocort) and Fage plain Greek yogurt. Per Dr. Shen, I open the capsule and take it with applesauce or yogurt. I think the yogurt has really helped. I get the budesonide from Canada. [ more ]
AllyKat Ugg, that's how I've been eating. Didn't know it had a name? My functional med doctor put me on this 4 years ago. Another thing I'm failing..... [ more ]
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J-Pouch ForumsGeneral Discussion
diet help
M mrskpollard
TE Marie Please see a new posting under the topic at "Fecal Transplant" under POUCHITIS, apparently it's been approved as treatment for pouchitis at Cleveland Clinic. If it works, this sounds like a miracle cure! [ more ]
suebear If you are new to surgery, keep a food log to determine what is causing your pain. Is it gas pain? Gas pain can be reduced by reducing certain foods. Long term you should be able to enjoy an unrestricted diet. Sue [ more ]
CTBarrister Long term, you want to reduce carbs and sugars which fuel bacterial overgrowth in the pouch, and this situation in turn may cause or lead to chronic pouchitis. I have chronic pouchitis and it was suggested to me by my doctors that this was a result of chronic bacterial overgrowth. So I changed my diet a year ago and I have been doing a lot better since then and taking less antibiotics than I ever was previously in 18 years of dealing with chronic pouchitis. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frustrated and don't know what to think or do
M Matt34
TE Marie I hope that is the case. The reason why insurance companies had to cancel individual policies is because those policies didn't meet the minimum requirements required by the health care act. That only happened in states that didn't have the minimum standards so the coverage will hopefully be better and less expensive. It still is the doctor's fault for using the excuse that he needs to loose weight to have the take down surgery. It looks like she just doesn't feel competent to do the surgery... [ more ]
chiromancer [quote]Cause from what I've been told premiums are a lot higher then what I'm paying now and deductibles are outrageous.[/quote} Please dont listen to what you've been told, check it out yourself or have someone help you. The amount of disinformation floating around about the ACA/ObamaCare is sickening. There is a lot of variability from state to state. Generally the states that have their own exchanges have more competition and better choices and rates. Regardless, If your income is below a... [ more ]
Matt34 Yes I am self employed and my insurance did say I'm only covered in my state which us a bunch of bs but oh well the end of the month I'm done with them. So yes I'm sure being self employed makes this all harder because of my taxes and etc. Thats why we bust our bums in the spring to fall time to get money built up to get us through winter. But I contacted Medicaid again and they highly suggest I file for disability so I'm gonna look into my next options until I hear back from the healthcare... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Abnormal Pap
W winnie
Lesandiego I m ditto SuziQ except mine was about 30 years before my pouch. Never had another abnormal Pap. [ more ]
SuziQ I've had several abnormal paps showing cervical dysplasia. After recurrence I had cyrotherapy to remove the cells (that was likely 8 - 10 years ago). I haven't had a recurrence but know once you have it, you are likely higher risk for cervical cancer. I don't believe it's linked to the pouch, even though mine came after the pouch. I believe as others have said it's related to sexual activity and heredity. Most women in my family have also had it and either resulted in the loop procedure or ... [ more ]
skn69 I had my 1st abnormal pap smear when I was 23...it came back with level 2 dysplasia...3 months later I was level 4. I had already had my pouch for 5yrs by then...I was followed by an gyn-oncologist and treated over the years with the level going up and down...they did lazer, chemo and a whole lot of other treatments but I refused the hysterectomy on principal (it was a precautionary measure that I wasn't willing to take). In the end it took 5 yrs for it to get totally under control. I still... [ more ]
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J-Pouch ForumsPouchitis
Xifaxan for pouchitis
C Chrissey86
Scott F If the meds aren't working (though there are additional ones you could try - I'm currently on doxycycline), you may want to try diet adjustment (e.g. very low carb or low FODMAP). This can take a while to work, so give yourself six weeks or so if you're going to try it. It's better than another surgery, I think. [ more ]
urbhusker I've been a lurker for some time and decided to register today as there is a ton of great information from you fellow J-Pouchers! Anyway, my takedown was this past April at Mayo in Rochester and I had issues with strictures and pouchitis so I went through an additional procedure (again at Mayo) in May...which didn't help. The surgeon only dilated and then sent me home to self dilate (fun, I know). In June, I started to "back up" and ended up in the hospital here in Des Moines. That surgeon... [ more ]
AllyKat Xifacan keeped me in a blissful remission for almost 3 years then it stopped working. I'm trying it again after a 4 year hiatus. [ more ]
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J-Pouch ForumsGeneral Discussion
Osteoporosis
S SherriT11
Jan Dollar It is possible, but more likely that your history of UC and possible steroid use is the real causative factor. Plus, if osteoporosis runs in your family, you have that going for you. Osteopenia/osteoporosis is such a common condition in the general population, I doubt that not having a colon would be a major risk factor. Tons of ileostomates out there who seem to absorb calcium and other bone nutrients. http://nof.org/articles/5 Jan [ more ]
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J-Pouch ForumsGeneral Discussion
digestion/absorption question
I iHateColitis
ARP83 peanut butter (natural no-hydrogenated oil types), nut butters, cream of rice, and ground meats. I have noticed normal carbs kind of cause me to bloat. As for meats chicken and fish seem to go through me too quick and I have a high metabolism. I found ground pork, boar, buffalo, venison, lamb and rabbit seem to absorb good. In all honesty you have to figure out what works for you. When I eat i dont drink anything until about 30 minutes after i eat to help my body try and absorb as much as... [ more ]
Bodoni For those who are a bit concerned about absorption, there is a chewable vitamin called Forvia. I take two per day, and have done so for years. This supplement was developed for folks like us who have or had bowel disease. Check out this website http://www.inovera.com/default.aspx [ more ]
Jeff D I'm having the same issues gaining and even maintaining weight. I lost over 35 lbs. and am attempting to gain at least some of it back. I am 27 years old and just about 6'5". All that lost weight does matter to me, because as you mentioned it does appear like I am malnourished. It's been almost a year since my takedown. I recently began lifting weights and drinking protein smoothies. Any other suggestions for others that have effective to gain weight? Thanks. [ more ]
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J-Pouch ForumsGeneral Discussion
Bowel movments
MurrayMurray
Anushka I strain a lot, and it's a concern for me. It's involuntary - almost like pushing during labor. I can't really help it or moderate it. Once the contracting/straining starts it's usually very strong. And it's associate with pain (as is a full pouch). I feel something akin to a strained muscle within my lower pelvis, right side. I also have a lot of difficulty releasing urine / emptying my bladder, and especially so if I have a full pouch or have been straining. If I only have to pee, I seem... [ more ]
Jan Dollar I think you maybe misunderstood. It is not that you cannot push it out, but that you should not be straining in order to empty your pouch. Some minor bearing down is necessary in order to trigger relaxation of the internal sphincters. Only the external sphincters are under voluntary control. You are not supposed to strain because you can damage your pouch that way (prolapse). If you need to strain a great deal, then you have problems. Either a stricture, twisting of the pouch, or pelvic... [ more ]
Murray Ok thanks [ more ]
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J-Pouch ForumsGeneral Discussion
PlantFusion
I iHateColitis
iHateColitis Thanks TE. Yes, it was you I had seen. It definitely sounds interesting. I went ahead and ordered a free sample. suebear: I don't experience major problems but just a slight increase in frequency. [ more ]
TE Marie I'm probably the one that you saw promoting PlantFusion. I've been using it almost daily for over 2 years. It was recommended to me by my nutritionist. It has all natural plant ingredients and some fructose. If you type your zip code in at their site it will show you locations near where you can purchase it. I've also purchased it on-line through Amazon and LuckyVitamin. I make fruit smoothies with it and add veggies like carrots and fresh spinach. One serving provides 42% of the daily... [ more ]
suebear What problems do you get with protein powders? I have used several but have not had problems with them. The one I have been using lately is a vegan powder made by Vega. I like the taste and it mixes well. Prices are good through Amazon too. Sue [ more ]
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J-Pouch ForumsPouchitis
Long Term Remicade for Chronic Refactory Pouchitis Study
Jan DollarJan Dollar
kentuckyboy Per the inquiry as to why I'm prescribed Remicade, I had Pouchitis in 07 so severe that nothing was working. The Remicade cleared up most of the inflammation that was in my pouch. I keep on telling my Doc about my painful issues and so he had me take the Prometheus test for antibodies. We found that I have not built up any resistance to antibodies and so I will continue. I continue to take his advice because I possibly could regress to my condition at the beginning. I continue to try various... [ more ]
AllyKat I have inflammation at the bottom of the pouch, I had ulcers too in the past. Last scope last week showed mild inflammation again at the bottom and moderate at the dome. had this 4 years ago. Something about bacteria, food getting caught up there, idk, I tuned out when she started talking endocort. I am failing or either can't take some of the drugs. This was not what I bargained for and yes I was almost done it by the surgeries so removing this is very scary for me. Looking into fecal... [ more ]
jeane I'm so sorry to hear about this Alleykat. My surgeon did not warn me about this with the surgery. I had to research it myself to find out that strictures are not that uncommon with a hand sewn pouch. As far as the ongoing inflammation, I am guessing that is coming from your lower pouch itself? I have always had inflammation in the very lower area of my pouch and the connection. I'm certain having the pouch advanced will not relieve me of that unless they can miraculously remove the bottom... [ more ]
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J-Pouch ForumsGeneral Discussion
protein powder
I iHateColitis
vanessavy I'll repeat what I said since it was advice. It is the highest amount of natural sourced protein the body can absorb. Way better than whey protein or any gluten/whey filled junk. [ more ]
skn69 May I jump back in with both feet? (and possibly stick them in my mouth?) Here in France a lot of the milk is not pasturised and most of the cheese is made from non-pasturised milk...France threatened to quit Europe if they obligied us to start pasturising! (I suppose that Europe backed down but I am not sure...in either case our cheese is still made with non-pasturised milk)...many belive that we digest non-pasturised milk better...ditto for the cheese. No statistics on salmonela on the raw... [ more ]
KeepFighting(Manny) heres some info for you to look at, http://www.nutritionexpress.co...e.aspx?articleid=787 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frustrated, will I ever heal?
R RamonP85
RamonP85 Thank you all that have replied, this has truly helped me see that I'm not alone in this and that others have also gone through what I've gone. And that hopefully things will get better I appreciate it thanks again. [ more ]
TE Marie Sometimes I wish I'd waited longer between my first surgery and my take down which was 8 weeks later. I agree with everyone above about trying to find a better system for your ileostomy. Frustration is a good word to describe what you are going through and this is also serious. Your boss probably doesn't understand that you've had 5-6 feet, your entire colon/appendix/rectum, of your intestines removed plus have had problems with your small intestines as well. This is no little gallbladder... [ more ]
liz11 ramon, I hear you. Sometimes I think I am the complication queen, a title I am not proud of. Try your best to think day by day. Also sounds like you MUST see an ostomy nurse as soon as possible. He/she should be working with you to get appliances/gear that fit, don't leak, are comfortable, and don't cause skin irritation. Try to focus on getting some assistance in that area. As I believe if you can get that problem solved, it may help boost your spirits at least a little bit. Hang in there... [ more ]
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J-Pouch ForumsGeneral Discussion
Feels like sand under my tounge and down my throat
skn69skn69
skn69 Thanks Ally Kat, It seems to have gone away for now...it took about 10 days...never did figure out what it was or where it came from, I am just happy that it is gone. By the way..my sense of taste is pretty much gone too. Is it related? Sharon [ more ]
AllyKat I'm sorry to read that your having more problems Sharon. You r a good person and I hope this goes away quickly. [ more ]
skn69 Didn't get in to see him...been crazy busy...No, I have never been tested for Celiac but I do have tons of food alergies...just none that ever did this to me...next week will see a doctor..don't know which...whoever has time to take me in...for now, off to another town to do some work and can't slow down or I will never get started again...I'll keep away from all bread and cheese (darn, this is France!) Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
4 months, wound still open HELP
Stephaniesays91Stephaniesays91
Stephaniesays91 Yeah your right I've been told If I try go to the hospital il get turned away as I'm not an accident nor an emergency! And my gp just says il heal it takes time which Is very annoying when I'm being financially crippled! I see my surgeon on Friday which I've waited 5 months for and I don't plan on leaving him until he's done something about it!! I'm soakin the wound in prontosan every day just now but I can't tell if it's making any difference yet! I eat quite well but I think I may get some... [ more ]
skn69 Josh, I believe that you are living with the very North American disillusion that medical systems in Europe (and elsewhere) function the same way that ours do....Nope. It is a bad joke when people envy our social medical system here in Europe because it is 'free' (misnomer)...it is not necessarily a pre-pay system but it is 3 tiered. The welfare receipients get to go to doctors who accept their special card/situation...not all do and most have quotas (or they would go bankrupt). Here, most... [ more ]
skn69 I have never had a wound that did not open up, spread and stay wide open for ages...I ususally dehyss around week 6 and am open for 2 or more months depending on wherre the wound is and how important the surgery. (full blown abdominal or smaller etc)...I make sure of 3 things before, during and post 'split'...1. NO SMOKING (it prevents healing and even an occasional cigarette is enough if your system is fragile (and I am a smoker)) 2. Good nutrition (I juice a lot post-op to get all of the... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Scope-how often
W winnie
mgmt10 There is different opinions on this with different doctors but my surgeon told me to come see him annually for a scope. No real prep is needed....I just do an enema 3 hours prior to the visit. No sedation is needed either. It's real quick. [ more ]
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J-Pouch ForumsGeneral Discussion
Hydrogen Test
R Rocket
Rocket Had to postpone my test because I got a severe cold. I went as scheduled which was the day before Thanksgiving, but I couldn't take it anymore as I had a pounding headache and congestion. This is day 6 of this cold. [ more ]
Rocket Vanessavy, If I don't watch what I eat, I will only suffer for it. Last night, I had two slices of pizza which is a No, no for me and I had the runs during the night, waking up 3 times, before my alarm rang. Basically, I was up every two hours. That is no fun for me. [ more ]
vanessavy Forget about the diet and have fun! I am in NYC and Philly and eating everything under the moon and sun while out (just ate pumpkin cheesecake, totally NOT on my Paleo diet). I will clean it up when I get home. [ more ]
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J-Pouch ForumsGeneral Discussion
what is it about alcohol that causes problems?
S Salmak
Spooky I don't drink much alcohol, but I am able to drink darker ales like Guinness without any problems. On the other hand, lighter beers seem to increase my frequency, as does wine (white - I don't drink red). Maybe it's true that Guinness is actually good for you. *LOL* Seriously, though, alcohol can have a dehydrating effect, so that might contribute to some of the problems you are experiencing. [ more ]
Jan Dollar I have no issues with alcohol, but I'm not much of a beer drinker. It is pretty well known that beer increases frequency for most people, so I would assume it is something particular in beer, and not the alcohol itself. Jan [ more ]
TinCan I can't answer your question and don't really know who can. All I know is that for some people alcohol will slow things down (like dgloria5) while for others (like myself) it causes increased frequency and watery movements. Doesn't seem to matter what kind of beverage. I was never much of a drinker before, but now I rarely drink at all. When I do drink, I consume very small amounts. Let us know if you crack that puzzle. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible cuffitis??
F Fazz
Fazz Top post TE Marie, Really appreciate your reply.... [ more ]
TE Marie I haven't heard of them becoming ineffective. I have chronic cuffitis and lately I can't miss a day without it recurring immediately. I have days where I'm visiting family or whatever and I miss using a mesalamine suppository and I can get away with it but most of the time I can't. My GI says some people get to a maintenance dosage of a few times a week but I haven't been able to and have been trying for over a year. You have described cuffitis, which is UC of the j-pouch cuff, perfectly. If... [ more ]
Fazz Ive been using them on and off for a couple of years but what if they become ineffective what would be my options? [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamin D shown to inhibit inflammation
John95John95
TE Marie I take 5,000 or 10,000 units daily of D. I need to ask about K2. Thanks. [ more ]
sudie Interesting my naturopath has put me on vitamin D/K2 apparently this tell your body were to send your nutrients to in our body only been on it about 8 weeks so probably a bit soon to see if my pouch flares again wait and see [ more ]
AllyKat Yes, my doctors actually did a study on this but guess what! I got my vit D levels up to 125, didn't really mean to go that high, just forgot to get it checked in a while, and then guess what, even at these ridiculously high levels I got a relapse and have an inflamed pouch again! [ more ]
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J-Pouch ForumsOstomy & Skin
Gas in the bag
S Selma
Lynne2 I swear by Osto-EZ-Vents! I haven't heard of the pin-hole trick before, but I would be too chicken to do it for fear of leaks. The vents I use are very simple to use: attach to outside of bag, poke a hole, then close the top (which is similar to what you'd find on a beach ball. Those vents have saved me on a number of occasions. Before I found them, I had accidents when opening my bag if it was filled with gas and stool. There might be other brands out there with a similar concept. I use the... [ more ]
Donna H For the odor, I am using Cepacol mouthwash that I put on a square of TP (or half of one) and stick it in the bag. It works very well so I do this every time I empty. My home health nurse told me about this and she also told me about *****ing the top of the bag for gas. It does seal itself off so you would have to do it again throughout he day. It is so helpful to share these little tidbits to make our lives easier. What might work for one might not work for the other but every idea is worth... [ more ]
Badplumbing Over on the ostomy forum of the healingwell forums this topic just came up too and someone posted that they add this after market vent to any bag- it's called the ostoEZvent and, as an ostomate to be, I can't say how quick and easy it is to install, but the poster said it works great; it is unfiltered so of course one needs to be in a non public area when you open the vent: http://www.kemonline.com/content/home/ [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Had takedown a week ago, want to make sure I'm on a normal track!
A aliiien
Scott F I needed something milder than Calmoseptine, and I find the smell of A&D unpleasant. Plain zinc oxide worked just fine for me, and I also used the more exotic Ferguson Formula, which is like a very mild Calmoseptine, but not as plain as zinc oxide. FWIW, I haven't used any of this for about seven years or so, and I'm just now shopping for my first bidet. It really does get better! [ more ]
Pluot Cavilon is a barrier wipe often used for peristomal skin. Some people have posted in the past about using it for perianal skin but it has always struck me as being too thin/not water resistant enough. Be careful with dimethicone. It is VERY good at sealing in moisture, which means it can also be very good at breeding a fungal infection around the anus unless you are very thorough about drying before applying the cream. I'm one of the people who finds Calmoseptine irritating -- it contains... [ more ]
kta Calmoseptine irritated me. I used ProShield Plus. It is something you have to order online, but the hospital gave it to me originally. The company also makes an incontinence spray that I like when the bidet doesn't clean completely or when I am out of town. To be honest, until I got the bidet, I was constantly jumping in the shower. That was the only thing that took the unbearable burning away. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
BillV - I have question
K katey
BillV Katey, I don't know if you got my PM yesterday, but I've been there, done that and would like to answer your questions the best I can. Please call me at (715) 420-0087. Bill [ more ]
katey Thanks for the info. I also had my surgeries at Mayo, on year 24 with pouch, and I thought without a rectal cuff there wouldn't be a problem with dysplasia/cancer later. I have some kind of mechanical issue or something going on but can't seem to find anyone around me with pouch experience. Guess I need to go back to Mayo sometime for a check. [ more ]
BillV Katey, It has been 32 years since my original surgery. At that time, Mayo Clinic was doing a straight hookup with no pouch. I believe it was hand sown with a mucosectomy. I had an S pouch installed two years later to help reduce frequency problems. Things went reasonably well for many years until a malignant polyp was found in the anal canal in 2007 and was successfully resected. Dysplasia was found in this area last December and removal of the pouch and an ileostomy recommended. It also... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Cleveland Clinic Dr.
D dr
SteveRoffman Thanks for your reply. I found research papers by Dr Shen on rifaximin and pouchitis a few months ago and have been taking 275 mg 2x a day with incredibly good results. [ more ]
vanessavy You have to be on top of him if you need anything once you leave. He is extremely kind and will listen to you and explain things in great detail. I spend an hour usually when I go there. I had a email conversation with him the other night at 11:30, usually he answers best at night when not busy I realize. He is constantly working and busy but calling his nurse has always been easy to get things through if email is not consistant. [ more ]
TE Marie FYI, Dr. Shen has published many papers with other doctors, some mentioned above, on j-pouch studies at CC. You can search for them on the internet by topic. I don't know if there are any regarding your specific problem but I've never searched for crohns related topics. [ more ]
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J-Pouch ForumsGeneral Discussion
Night time accidents
T Tyler44
Mark01 I've been having the exact same problem for months. Every time I sleep. My doctor has put me on a course on antibiotics and is doing a procedure every few months to try and widen my pouch (not sure why). [ more ]
Spooky Same here. I've rarely had nighttime leakage, but when I have, it's been associated with pouchitis. As Scott said, sometimes things like this can be the first/the only sign. Other things to consider might be cuffitis or even hemorrhoids, but any of the above can and should be checked out by your GI. [ more ]
Scott F For me this is the first sign of pouchitis. If that's the case for you, Cipro or Flagyl would likely take care of it pretty quickly. [ more ]
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J-Pouch ForumsPouchitis
Xifacin and SIBO
vanessavyvanessavy
elizabeth119 My doctor switched the rx to 550mg and that is covered for a full month...220 was not fully covered. [ more ]
Scott F Doxycycline works well on SIBO - I'm on it now. It did give me a dreadful bellyache for a couple of days at first, but I toughed through it and it passed. It's quie inexpensive. [ more ]
vanessavy Sugar and carbs do me in. I had a bad 3 weeks on vacation. Smelly stool, painful bowels, heavy feeling pouch, etc. back on my paleo diet and a complete 180, no more smelly poop or pain and gas Tindamax works really well for me but the neuropathy is bad. My lefs get spasms that feel like electric bolts cripple them. Been in the ER for it when real bad. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Inflamation
skn69skn69
skn69 Thanks Clouseau, I will look into it...feels like my whole body is against me at the moment... Sharon [ more ]
clouseau Sharon, This web site has helped me so much, it is very integrated in its approach which sounds like something you might appreciate. We talk a lot about how so many oncologists give such terrible info such as " eat any thing you want". Sudra is the major fuel for cancer. The site is www.lymphomasurvival.com . I am doing fine and was diagnosed 1.5 yrs ago and it is not unusual for UC-crohns people to get follicular lymphoma. Please let me know if I can help in any way my thoughts and prayers... [ more ]
dgtracy How ironic. My joint pain started up day before yesterday. I took 2 ibuprofen yesterday and it subsided a good bit but was back by the end of the night, took a tramadol and a half to be able to sleep last night and i woke up feeling pretty good, joints didnt start hurting for a while. [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Afraid of sexual abuse when having the OP
A Andreita
TE Marie I had a female nurse that made me feel that way and she made me cry on top of it. The only one. She came back into my room later on and asked if I wanted her to not be my nurse the rest of my stay, they honor requests like that at the hospital. I said it wasn't necessary. She saw through me, I'm a bad liar, as she never was my nurse again. Not for my first, take down or 6 months later incisional surgeries. I remember her name and said hi to her when I saw her while walking the halls. I don't... [ more ]
CeeeeCeeee I hadn't been a patient in a hospital for years and I don't recall ever being given a bed bath while a patient......until my proctocolectomy. I was barely coherent (from pain meds) when a male attendant seemed insistent on offering me his services to bathe me. Bells and whistles went off inside me and I said, "No, thank you." When a female nurse came in I explained that I only wanted a female to bathe me. Wish granted. I didn't feel this way about any other nurse or attendant at this... [ more ]
ActiveUC'er I just wanted to add that, even though I haven't seen a picture, I'm sure your body is fine. Teenagers and kids can be cruel. Even some adults are idiots. When I was younger, people used to tell me I was so ugly. Now I'm told that I'm "beautiful" but the comments made when I was younger still rather bother me. I'm also rather small chested so you definitely aren't the only girl out there! [ more ]
See all 31 replies...
J-Pouch ForumsHelp! Need advice now!
Teen with JPouch...questions
S Seriously?!
CeeeeCeeee Very recently I went through a bout of having to come home by noon and sleep for about 1 or 2 hours. It was unusual for me so I told my internist who ran blood tests and learned I was very anemic. I thought I was dehydrated because early on in my experience with an ileostomy, I felt the same way and being infused with whatever they give you for that purpose (IV) worked wonders. Not this time! Same symptoms, different diagnosis. Glad I checked it out. [ more ]
Jan Dollar Connie, good to "see" you and I am glad to hear that Thomas is back to doing a fairly normal routine. It would be nice for you guys to have some boredom to complain about instead of the constant medical issues. Jan [ more ]
Connie Seriously?, if you're still here: I would be that member with the grown son (age 22). Don't give up on this message board because of one bad exchange. There are a lot of helpful people here. With regard to school, she probably is right about the drug situation--it's rampant. I also understand and have experienced the various other school issues. Due to life-long chronic fatigue ( not chronic fatigue syndrome), frequent illness and the school district's inability/refusal to adhere to his 504... [ more ]
See all 32 replies...
J-Pouch ForumsGeneral Discussion
Rifaximin reduces frequency of evacuation
S SteveRoffman
SteveRoffman Thanks to all. I had no idea the cost of rifaximin even generic which I take. [ more ]
phonix2g That's great to hear that you found something that works for you that well after so long without as many risks. I give you lots of credit for dealing with chronic pouchitis for all those years. It's definitely a mental test having to deal with the inconvenience of having to go to the bathroom that often. I hope you continue to find new things that help you reach your normal. Good Luck. [ more ]
AllyKat I had great success with xifaxan for about 3 years and then it stopped working. I have not taken it for 4 years now and back on it. I hope it will work again? My insurance has not met my deductible yet so I was quoted $1000 at Costco, yikes, my holiday present this year I guess. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
My Anti Smith Antibody test result
C chal
chal Thank you Jan. I knew you would be able to clarify this. You're the best. [ more ]
Jan Dollar OK, that helps. Anti smith antibodies are a type ANA (antinuclear antibodies) that are very specific for lupus. While they are not present in all lupus patients, 99% of those with a positive result have lupus. The level doesn't matter as much. It does not reflect disease activity, so it is not helpful for monitoring treatment efficacy. http://www.hopkinslupus.org/lu...s/lupus-blood-tests/ Lupus is a very difficult disease to diagnose, so I can see why they are following you on this. So,... [ more ]
chal I have osteoarthritis. When I went to my RA dr. for the first time they did a bunch of blood work and she said I showed positive for lupus. It was a low number. She said it was probably a false positive, but it was positive again six months later, .38. I'm assuming the blood test that she said showed positive for lupus, is this anti smith antibody test. Since it was positive twice in a row, they will continue to monitor every six months. [ more ]
See all 4 replies...

Join Us!

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

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