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J-Pouch ForumsK-Pouch Korner
Best Probiotics for Kpouch?
D dpol
skn69 Have you tried stinky French cheese? Works great! (no joke)...one of the reasons that the French are fighting so hard against the European Union to not be forced to pasturise thier cheeses is because it kills so many of the healthy bacteria...they don't drink unpasturised milk (although it is availible if you look for it)...but most good cheeses here do not use pasturised milk...And the population that consumes them seems to have a much lower rate of intestinal problems and... [ more ]
Bodoni I use Culturelle in the mornings and 1 small bottle of DanActive in the evenings. These work well for me. Some use Align. Or Acidolfolis (sp?) And then there is VSL #3, which is pretty expensive, I hear. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown tomorrow!
S Salmak
TE Marie There are some good u-tube videos by a guy named Denis about the whole experience too. He chronicled his experiences from after surgery forward, including butt burn. Somehow through watching his videos I found this site in a search. [ more ]
Mike H and yes I typed that really fast without spell check lol [ more ]
Mike H I suggest you take it day to day. It may take a couple months before you start to feel anywhere near mormal again. Go to the ihaveuc.com website. It is moreinformative with curent real life stories that ill help you so yu do not have to post here all the time. Rela and stop trying to borrow trouble or you will get it. Stress is not good. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch help
M Matt34
Pluot Yes, definitely. There have been a few posts just in the past few days about Dr. Remzi, who is sort of the "j-pouch god" at Cleveland Clinic, telling users they should lose weight before surgery. I'm a very small woman and I lost a lot of weight when I was sick so I was underweight when I had my first surgery. After the operation I told my surgeon that I was excited to gain some weight back (and this meant just going back to normal, not overweight), and the surgeon told me that I should try... [ more ]
Matt34 I really enjoy everyone's comments. One other question has anyone ever heard of having to lose weight before j pouch surgery can be done. I'm a 250lb man and that is what my surgeon told me a couple of months ago when we first talked about the j pouch. She told me it makes it easier to do the surgery when I'm at a lower weight. [ more ]
Scott F Matt, it sure sound like you're heading for a J-pouch, since they were developed just to offer a normal-ish alternative to the much simpler ileostomy. I'm sure glad to have been able to choose that option. I have only a couple of suggestions: 1) Choose your surgeon carefully. Someone who does only a few of these procedures per year would not be someone I would choose. A badly constructed J-pouch is not something you want. Also, the deadline your surgeon set may have been well-intentioned, to... [ more ]
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J-Pouch ForumsGeneral Discussion
Just had reversal ileostomy for J pouch, butt sore
S Sburr17
ceew I purchase calmoseptine at Walmart. It is in the baby section. Also I agree about the Ultra Soft Charmin. [ more ]
phonix2g Calmoseptine is good to protect the skin in and around the anus due to multiple bathroom trips and wiping so often but it is not going to help with the rectal soreness or tailbone pain you might be experiencing. What did they give you for pain? This pain is going to be from gas pressure or just gravity pull of any waste you have sitting in your pouch. For temporary relief I usually take a bath with Epsom salt or sit on a heating pad but this isnt going to diminish the pain completely. If the... [ more ]
Scott F Even plain zinc-oxide ointment, available at any pharmacy, works just fine. I'd suggest applying it after every BM, so it's there before the next one. [ more ]
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J-Pouch ForumsGeneral Discussion
Spooky??
CTBarristerCTBarrister
Spooky Jan, I had actually fixed my notifications previously, when we first became aware of this, but for some reason I still didn't get notification of CBarrister's PM. I've just gone back and updated my settings again in case I did something wrong the first time (I realize now that I may not have hit the "update" button last time). Hopefully it works this time. [ more ]
CTBarrister I had not included replies and since Spooky replied to my PMs, that may have been why I did not get her replies. I have now checked off the "include replies" box. [ more ]
Jan Dollar When you checked your notifications, did you make sure to check "include replies" on the email notification? If not, you would not be notified if someone replied to you. My notifications are working. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Back from first pouchoscopy
N NewShinyCD
jeane My rectsl cuff often looks similar to your pics. My inflammation is chronic in tbe cuff even when on rectal meds. Remember, many of us often have some level of inflammation in our pouch even if asymptomatic. At my last scope they found two small ulcers and no visible pouchitis ..go figure. The meds should help clear this up. I take cipro often, on and off since my takedown two years ago.... not happy about it but it beats the alternative. Good luck and feel better. [ more ]
NewShinyCD Lol, yea I'm not sure why I warned about the pictures. Anyway, I was on iron supplements for a month before the scope. I had a second blood test last week and I'm no longer iron anemic. Hopefully these antibiotics will get rid of the pouchitis. [ more ]
phonix2g Do they have you on iron supplements? I don't think you have to worry about this group being squeamish with anything as we all have been through and seen it all. [ more ]
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J-Pouch ForumsGeneral Discussion
Released from Surgeon
ceewceew
TE Marie Congratulations ceew. I love to golf so know how great that must have felt to come through all you have and to be out there again! Same to you Mike, fantastic and no butt burn too! [ more ]
JeffDC It is a great day to be fired from your GI or surgeon because you are doing so well. Glad you got fired. [ more ]
ceew Judy1, that is a very good thought. I am a winner. Thank you Mike H, I'm happy to know you are doing so well. Fishing? I could do that too [ more ]
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J-Pouch ForumsHelp! Need advice now!
Painful butt
C ccarmenc
PDXDavid Irritation can cause inflammation which makes the folds of the anus swell up and feel like a pea. After my take-down, my doctor looked at my backside and said, "that's one sore ass-hole." That is a direct quote. LOL. He enlightened me to the miracle of Calmoseptine and plain-water washing. (I was using soapy water, which was increasing irritation.) I now use a coco bidet. I'm not saying that is what is happening with you, but it's a possibility. It happened to me. [ more ]
Jan Dollar My first thoughts are a thrombosed hemorrhoid or perianal abscess. Home care until you decide to see a doctor would be warm sitz baths 2-4 times a day and topical anesthetics. If you develop a high fever or a widening area of pain, you'll need to go to urgent care or the ER. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How long to exercise? So tired!
Stephaniesays91Stephaniesays91
Stephaniesays91 Thanks for all the advice! I'm 22 and am impatient waitin to get my life back but I think it's best taking it slow! I'm just excited to get back into tight dresses and skinny jeans! Haha all in time tho! [ more ]
phonix2g The problem is they give a time period that is not average for every person. There can not be a specific time frame given due to many factors such as age, prior health issues, etc. You have to just trust and listen to your body I retract my statement to seek advice from a professional due to the reasons I've given. We are all different in a lot of ways. I am a 30 year old male and was always healthy and 6 months post takedown I wouldn't risk doing crunches yet. Just go slow and know when to... [ more ]
Salmak When I was in hospital last week the physio that came and saw me said pretty much anything after 6 weeks. [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation under anesthesia
P phonix2g
phonix2g Yeah I'm pretty sure if men had to give birth that would be the cause of the human demise ha ha. Most of us men are really big wusses when it comes to pain. Giving birth twice without any pain meds WOW you are a tough cookie. Thank God we get the easy part. [ more ]
mgmt10 Glad it went well and all looks good. I didn't ask for sedation because my surgeon is an hour away and I just wanted to get there and home and not have to bother anyone for a ride. I have a high pain tolerance (gave birth twice with no drugs ) so I didn't mind. It wasn't fun but at least it was quick! [ more ]
phonix2g Thanks Marianne. Yeah the Dr. explained almost exactly how you did about the scar tissue. I don't mind if that is what has to be done to get things working properly. You are definitely much braver than I am getting it done in the office. After he gave me the option of anesthesia it was an easy decision. I'm not afraid as a man to admit I'm a big baby when it comes to stuff like that. I had the procedure done around 1pm and happy to report everything when smoothly. No sign of pouchitis,... [ more ]
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J-Pouch ForumsGeneral Discussion
Cautiously ECSTATIC! Dr. Shen needle-knife sinusotomy
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Hi, guys. One week from the NKS procedure with Dr. Shen and I feel pretty good. I am still taking precautionary antibiotics (Tinidazole) for another week yet. I'm slowly getting energy back and feeling somewhat human. Will continue to update when I can. [ more ]
jeane Good for you. Please keep us posted of your progress. I really hope this helps. I never had the barium...only the MRI which showed nothing but my symptoms have been pretty unbearable since day one. I have had several manual dilations with chronic cuffitus... Always pain in my back end. I have gotten used to it unfortunately but I know it's not the way it should be [ more ]
Troy Jeane, never had a takedown. one step done in 1999. had sporadic pouchitis every couple of years but this past spring had worst pouchitis ever. i am guessing that the sinus tract may have had something to do with it. not sure what CRE is but it was a balloon dilation that was done. i am feeling much better. still not there though. When i first saw Dr Shen last month he said there were two examinations that he would perform to see pouch. the first was a barium enema with photos. he called... [ more ]
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J-Pouch ForumsGeneral Discussion
FUTURE OF THIS SITE ???
PouchomarxPouchomarx
Manchester Jan Thanks for the update. You are quite right, hosting for this site should be in the region of £5 ($8) per month. It might be worth swapping out the engine and replacing it with a more environmentally friendly PHP version rather than this javascript version. Bill, please don't take this as a criticism, this site has served me and many others so very well and it works perfectly. It's just a thought that if the site is going to move then it might be a good time to change it. I'm glad to help... [ more ]
Pouchomarx apparently its not a huge deal to him regarding the costs or we would have moved forward already. its been months since this was brought up. I understand hes busy but why keep losing money on this site, lets get moving.. [ more ]
Jan Dollar It is not the web design so much, but the maintenance cost that is eating him up. This one has outrageous costs if you go over the page view limits. I did give him information on some reasonable web hosting companies. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Ileostomy and c section
S sally85
sally85 Hey guys! Just thought I would update you, I went to breach clinic and well he's still breach! I'm 35 weeks now and she said more likely than not he'll stay breach but may still move around so no clear answered there, I went to my surgeon however and asked him what he thought and he said if you want the ileostomy reversed in the future (which I said I really did want) then he wants me to have a c section and it was no questions asked he said if during a normal vaginal birth I was to get a... [ more ]
Jan Dollar One thing I failed to mention. If this babe stays breech and you have a c-section, you'll likely have a c-section for the next one. VBAC (vaginal birth after c-section) has fallen out of favor. When I had mine back in 1987, it was popular and considered safe. But, c-sections have become so safe, they are safer than VBAC. So, OBs advise against it now. Maybe in the UK it is different though. Jan [ more ]
JillM 2 planned c-sections with my perm ileo. Totally uneventful. Much easier recovery than from my intestinal surgeries. [ more ]
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J-Pouch ForumsGeneral Discussion
lets say you go on a car trip..how soon do you take immodium?
dgtracydgtracy
Manchester In July of this year myself and three friends embarked on a charity event to raise money for Crohns and Colitis UK. We drove across 12 countries in 7 days. 3500 miles in total. I took 4 immodium and 2 codeine each morning which ensured I only used the bathroom once until around 6 PM. [ more ]
Jan Dollar First of all, be sure you know how YOU respond to Imodium, since some experience little effect, while others get completely constipated from a single pill! So, taking a survey won't help you there. If you already are accustomed to it, then anytime within a few hours before you leave is fine. It begins to have an effect within 30 minutes or so, peaks around 4-5 hours, and still has an effect 24 hours later. I usually take extra while traveling, mostly to be sure I don't have any panicky... [ more ]
mgmt10 I don't use Imodium so I cant answer that but I just wanted to chime in and say I have to agree with Sue out of experience with this myself. Don't think about it so much....just let it be. Because it sounds like you have a nicely behaved j pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
spasms after take down surgery
C Chrissey86
Bodoni I have had a K-pouch for years. Recently I began having spasms every day. There is no pain, but they are very annoying. In my case, my surgeon says I could have a partial obstruction. So, I am going for a CT scan in a couple of days. Hopefully, we can find out what's causing these darned spasms! [ more ]
beucfree You can have your surgeon order you Bentyl, which is antispasmodic. But, you are right, spasms will reduce and eventually go away with time. [ more ]
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J-Pouch ForumsPouchitis
Advice please
P PAB
Scott F VSL #3 does come in capsule form, but not in the prescription strength. [ more ]
vanessavy I had those symptoms but I had c.diff and an abscess [ more ]
Lesandiego My doctor was really pushing me to take probiotics too. I can't stand the taste of VSL mixed in anything. He said I could try OTC probiotics. If they worked "great", if not than try another. I am now going to try a 9-week course of Align ($45 at Costco). One capsule a day. I prefer capsules over tablets as I have always had a trouble swallowing pills. Started taking them the day after I finished a 7-day course of Flagyl. Pouchitis symptoms started to slowly appear after the Flagyl, but... [ more ]
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J-Pouch ForumsGeneral Discussion
goto link for affordable health care
vanessavyvanessavy
Scott F About the only thing the health insurance exchanges have in common with Medicaid is "coverage." In any case, there will be an exchange of some sort available in every state, even the states that are trying to keep it from working. [ more ]
vanessavy Well it pretty much is just Medicaid but extended. Florida for one doesn't participate in it. [ more ]
Scott F Even if the state chose not to participate the federal program will handle the marketplace for those residents. The big gap will be in the states that chose to decline Medicaid expansion. [ more ]
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J-Pouch ForumsGeneral Discussion
Success story
J jbear
hfc I survived my half ironman (1.2 mile swim, 53 mile bike, 13.1 mile run) two days ago, finished in 6 hours 16 mins on a beautiful fall day, sunny, a bit windy, 70 degrees in Richmond VA. I so far have not gotten Giardia from swimming in the James River. Next month off to New Zealand for 3 weeks vacation with wife (no kids, last one off to UVA in August). Will do a 26 mile trail run there. June is Comrades 56 mile run in South Africa. Don't let UC or a J pouch stop you from doing some... [ more ]
hfc Congratulations. Keep running! I am 9 years out, 54 now, and have signed up for a training program to do a 1/2 iron man triathlon this fall. Also will be doing a 50 mile ultra run in New Zealand in October. [ more ]
Holly M JG & Jbear you both are an inspiration that is for sure. thanks for checking in and updating us on how you are doing. I am one year out from takedown and although I haven't done anything close to what you have accomplished I too feel like a success story. For me it is because I am finally off all meds now except my daily probiotic. I thought for sure I would never be able to function without cipro or flagyl. (hopefully I am not jinxing myself) [ more ]
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J-Pouch ForumsGeneral Discussion
Ab exercise 7 years post-op
L lixxie
skn69 Why don't you try asking for 2 or 3 sessions with a physiotherapist? Just to teach you what is good and bad for you and give you correct instructions for your back and abs. Sharon [ more ]
lixxie Thanks. Stomach is still pretty sore when I use them, which is pretty unavoidable. Starting to revert to my old post-op tactics, ie. lifting my weight with my arms, and rolling sideways out of bed. I wonder if I should see my doc about it, but not really sure what he'd do. [ more ]
vanessavy This might help http://www.fitnessprospector.com/?p=888 [ more ]
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J-Pouch ForumsGeneral Discussion
what j pouch??
J jbear
Spooky Wonderful to hear! There have been many, many days in my post takedown life too where I haven't given my pouch a second thought. I wish we could all have those days, and have them more often! [ more ]
dgtracy Amazing and awesome story!! i am exactly 4 months, 3 weeks and 1 day post takedown and somedays are noticeably different, some days i have the same moments where im like..."what J Pouch" lol, those days are a blessing and yep everyone around me is used to my pouch as well which is also a plus, i also love the fact that you have a new boyfriend, to me that lets others now that just because you went through this surgery and bathroom habits change doesnt mean there isnt someone out there who... [ more ]
suebear I love these stories, isn't life wonderful post UC? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Experiencing a situation - need advice
S samlc25
TE Marie I have been on it for a month at a time with no concern of a thinning problem from my GI's. The dosage is 25 mg so do the OTC if you want to, it is far less harmful than prednisone and it works well for lots of people with cuffitis. It's called Anucort here but it says on the suppository wrapper "hydrocortisone acetate 25 mg". If you can get that OTC then it's the same exact thing. It's a relatively cheap prescription so I'm thinking it won't cost much OTC and why not try. If it bothers you... [ more ]
jeane Ask your doctor for a 25mg prescription for anucort (I believe hydrocortisone) suppositories. This is a very common treatment for cuffitis. I have chronic cuffitis and use both canasa and anucort at times. You need to know, however, that doctor are reluctant to prescribe this for long periods of time due to the skin thinning concerns. I am not an expert, but they are probably trying to avoid this issue at the anastomosis connection. [ more ]
KrummeEs My GI did check me and apparently I suffer from Cuffitis. There are basically no blood in my stools, but plenty of bad burns. You can see my other posts for further information. I have been on Asacol suppositories, but it's hasn't helped. Now my GI wants me to start on pregnisone 10mg suppositories, but I dislike the idea of pregnisone. I'm considering buying hydrcortisone suppositories 25mg (can be bought without prescription in Spain where I live) and try it before I start on the... [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis and prednisone
JG Julie G
TE Marie Asacol is a name brand of mesalamine here that orally has a special coating so I think they'd be the same thing. Some people take hydrocortizone suppositories and they clear it up, they didn't work by themselves for me. I use them with the canasa when having a bad flare, Canasa (mesalamine) at night and hydrocortizone (anucort) during the day. If you can zap it with a short course of prednisone then go for it. It appears to be getting worse. Mental Kaze is giving a good alternative to the... [ more ]
KrummeEs Out of curiosity: Is the any difference between Asacol suppositories and Canasa suppositories? They are both Mesalamine products, right? You (Americans) always mention Canasa - is it supposed to be better than the Asacol? I can't buy Canasa here in Spain and Asacol doesn't seem to work for me. [ more ]
KrummeEs I tried Pentasa 1g (oral) twice, but it for sure didn't make me feel better. To be quite honest, then I no longer know if I'm better with or without Mesalamine (oral or suppositories), I have so many ups and downs. I just know for sure that it has not made a significant difference for me and I'm more sore if I have been using it. TEMarie, don't worry, I understood perfectly what you were saying and appreciate your replies very much! Thanks! I think ghats I'm ready to take the next step, it... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
How long to try before seeking help?
T Tash1990
kdub I also agree with Jan- we did the "didn't try, didn't protect" for a year, but then once we really started actively trying (with temping and charting) I only waited 6 months to see a fertility specialist and get tested. Since my tubes were open, we decided to wait another 8 months of actively trying before we actually started treatment (testing was covered under my insurance, but treatment was OOP). As everyone is mentioning, J-pouch does increase your chance of infertility (you can search... [ more ]
rockandroller What Jan said, 100%. 6 months of targeted trying (with temping and charting) and no results, go to a fertility specialist. [ more ]
Spooky Although I'm not planning to become pregnant, my surgeon cautioned me as a general caveat that given the history, to seek assistance after 3 months of trying. He did say that that we have as much as a 40% increased chance of infertility due to the pouch surgery, and that there has been more and more research pointing to this in recent years. Though you are still quite young, I wouldn't wait if you are really hoping to become pregnant. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Difficulty urinating
GoodspeedeGoodspeede
kdub I came home with a nasty UTI after each surgery (catheter) and now I have a tendency to get them pretty easily. When I do have a mild one, I'm usually tipped off because I have that same urge to urinate, but then there's the unexpected delay. Maybe check in with your GP or gynecologist/ urinologist to see if that's the problem - then it's a quick fix. [ more ]
Goodspeede Thanks for the tips Jan & Sharon. You make a good point about a possible UTI or mild irritation of some sort. It doesn't hurt like a typical UTI. But us jpouches are weird. When I was pregnant I got a full-blown kidney infection. My doc said I probably had a UTI first that went untreated and then spread to the kidneys. It was bad too - I lost 20 lbs and was off my feet for 2 weeks. Luckily a prescription of bactrim kicked that pretty quick, considering how bad it was. But it makes me... [ more ]
skn69 A sudden case of shy bladder? I used to get blocked when I had to pee in public places, in hospitals or post op...my mom would have to turn on the water to get my brain to convince my bladder to 'let go'...still happens at the oddest times, even at home every now and then...usually means that something is either irritated down there (took a bubble bath, used the wrong soap, hubby been a bit too enthusiatic ...)...it isn't exactly full blown cystitis (although I did get a bout this yr for the... [ more ]
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J-Pouch ForumsGeneral Discussion
inflammation
K KeepFighting(Manny)
TE Marie Dear Manny, Many of us have found that once you get one autoimmune disease others follow. I have several others myself including fibromyalgia, an under active thyroid etc. There's a kind of arthritis many UC'ers get and I've read about one that does involve sores similar to what you've described but can't remember what it is called. I think you need to go see a specialist. My BP dropped dramatically after my surgeries. I was on medication for high BP and it fell like a stock market crash... [ more ]
Lesandiego Manny, Do you find you sweat more since your colectomy / J-Pouch? I certainly did. Sometimes when I am doing moderate gardening, I am just dripping sweat from the top of my head. Never anywhere else from my body. Honestly, it feels like a torrential downpour. I never / hardly ever sweated prior to my colectomy. [ more ]
skn69 Not necessarily but you could become more aggressive! ...But you just said something else that made sense to me...you are body building...which means sweat...And some of us develop cysts from excess sweating or clogged pores that build up excess sebum behind them and cause cysts...are you getting them in the sweat zones or areas that are rubbed by clothing (elastic bands)? (armpits, hairline, crotch, back behind the knees...) If so , you may need to do a couple of thingg: only wear cotton... [ more ]
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J-Pouch ForumsGeneral Discussion
back in cleveland
ST shoot thru
Disneynut I used a belly band from Target (for pregnant woman). It worked great and it wasn't very expensive. [ more ]
liz11 That's good news. My hubby always says he can tell I'm starting to get better when I start nagging him too!!! [ more ]
shoot thru Think it was the 8th we left Was there 9 days.. She is much better. May get the drain tube out tomarrow. Went for a dye study friday at local hospital. Will know more tomarrow. Hardly anything draining any more. But still a bit yellowish.. Shes starting to nag a bit last few days.. so she feeling better..lol Anyone know of a decent stoma belt? She is susposed to gi back to work in a couple weeks. Was wanting something to conceal the bag a bit.. Thanks for everything. U guys are great... [ more ]
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J-Pouch ForumsGeneral Discussion
Candida
R Rachel88
Rachel88 Sounds good. Ill try anything! Thanks. [ more ]
vanessavy There are a lot of candida diet books on Amazon to check out. There is also an herbal med called Candida stroy http://www.amazon.com/Natures-...-15&keywords=candida That might help you. I can't take it. If I have it I can gladly send it to you. I have to check if I threw it out. I have IC so it made my bladder flare to bad, sadly. [ more ]
skn69 Not sure but I think that it was on the OK list...keep us posted on how you are doing.... Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Zantac for pouch spasms?
B Bodoni
skn69 Good to hear that you are doing better Bodoni, I am sick as a dog today...don't know what happened...sudden, horrid pain, I dropped to the ground and stayed down for ten minutes...felt like my whole stomach twisted, dry heaves, spasms and it felt like I had a Charlie Horse in my stomach...then it subsided and came back 5 minutes later...lasted an hour til I threw up...calmed down and I have been unable to swallow an ice chip today...been over 24hrs since I ate any solids and fluids don't... [ more ]
Bodoni Thanks, Sharon. I think it has settled down since taking the Zantac. Of course this could be just a coincidence. I will give it a few more days and take it from there. If it gets worse, I will schedule a CT scan and hopefully see what is going on down there. How are things across the pond? Take care. [ more ]
skn69 Wow! I love it when we make discoveries...I am so glad that you found something to settle down the spasms...I would just never have thought that zantac would speed up parystalsis...I would have thought the opposite! I just hope that it is a permanent fix for you and that the spasms are over. Sharon [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Stabbing pains before periods
L LoveLife
LoveLife Thank you for your response. I have now scheduled a time with my gynecologist. Sharon, I also tend to be an optimist in that exact way I am glad to say, that it does not hurt, when I make love, but something is up. Now I am getting constipation-symptoms again - also "normal" when I now have my periods. [ more ]
skn69 I agree with Jan...if it is before every period then something is brewing in there...and your period is aggravating it...I am going to ask a stupid question...is it worse during love-making? One of the signs of fibroids and cysts was that sex was horrific...it felt like a knife in there...I avoided relations for quite a while due to the pain and ended up calling the GYN after about 6 months (I am an optimist...kept hoping that it would just go away...it didn't)...so I found out that I had... [ more ]
Jan Dollar My advice is that any time you have a new symptom that is both persistent and troubling, you need to inform your doctor about it. It could be nothing; just an adhesion that is pulling when your uterus is swelling from the growing lining before your period. Or it could be endometriosis, fibroids, any number of things that need attention. The fact that this is relatively new and recurrent/persistent, means you need to get to the bottom of it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
checking in
Holly MHolly M
Holly M ewwwww don't want that to happen, will only use it as needed! Thanks [ more ]
mgmt10 Glad to hear you are well. I agree with Scott about the cornstarch. You could develop a nasty yeast infection from using it. I've heard of that happening. [ more ]
Scott F That's great news! You may want to be careful with the corn starch. I'm glad it's helping, but that's food, and some microorganisms may treat it as a buffet. [ more ]
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J-Pouch ForumsGeneral Discussion
Staph again?
toobusy2cleantoobusy2clean
toobusy2clean She tested negative to MRSA the first two times. They didn't test her for that this time. They gave her Zosyn and Vanco for nearly two weeks last time. Right now they are only giving her Zosyn because Vanco gives her red man's. I need to ask them to give it to her slower then they did yesterday. Her infection is on her labia and is very painful. The GI at Sanford told us she was getting them from the stool draining from her fistulas. [ more ]
ElmerFudd So was she diagnosed with MRSA? Or is this a run-of-the-mill staph bug? If MRSA, it's not surprising it's coming back. Also, staph is pretty much always present on us and some of us are more susceptible to staph infections than others and get infections of one kind or another on a recurrent basis. Other possible reasons: these infections are not getting completely killed off and the bacteria sticks around (possibly stronger bugs) to reinfect. So no really helpful explanations - just what... [ more ]
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J-Pouch ForumsGeneral Discussion
Biopsy Results.
SallyJPouchSallyJPouch
SallyJPouch Thanks Sharon, that is what I thought. I will call Monday (although my appt. with him is the following Monday, the 30th). This Monday I have an upper G.I....been a long time since I had one of those. I hope you are doing well...you have been on my mind. Sally [ more ]
CeeeeCeeee My docs (not my colorectal surgeon, however) always seem to call me on Friday afternoon when I'm not home. They leave a message to call them on Monday. Meanwhile, I have the weekend to imagine the worst! I always think, "What is wrong with "people"? [ more ]
skn69 Sally, I've been called in but never for good news...that said, sometimes the results are suspicious or non conclusive and they want to discuss redoing them with you...so don't panic...it could be just a precaution...take a hot bath or a long walk and think about something else until you can talk to him on the phone...or call the secretary back and ask for an immediate appt... Hang in there, I know how hard this sort of phone call is... Sharon [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Abdominal Pain by ilieostomy
K kjcole
kjcole Well thanks Jan. Went up to Mayo clinic this week and had CT and scopes done and waiting on biopsy to come back but they saw a narrowing of my small intestines so they are pretty sure I have Crohn's now just waitinn until Monday for results. I don't have any other symptoms of crohn's though so I will just wait for them to call then maybe I can get back to IVF. Glad I went to check before trying IVF. [ more ]
Jan Dollar Sounds like you have a partial obstruction from adhesions related to your old ostomy site. This is the most common site for this issue. You could run this by your GI or surgeon and see if it is significant enough to have taken care of before attempting IVF. I agree that if you think you might need an invasive procedure, like adhesion surgery, better to deal with that first. It could worsen with pregnancy, or it could improve too. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I am curious about toilet paper . . .
DebraDebra
Debra CeeeeCeeee ... how lucky for you! I deal with fish for two days; even chocolate and some fruits don't change much. And am very sensitive to the odors of the toileting process. I would have to say I would want to carry a zip-lock with me to dispose of soiled tissue so it wouldn't contribute to the ambiance, so to speak. I love the idea of a squirt bottle, but that would not take off some of the very sticky or clingy stuff I wipe. (Ow ... very indelicate subject: sorry.) I use cut-up squares... [ more ]
CeeeeCeeee Very recently a local Vietnamese restaurant installed a sign in the bathroom that asked us to deposit used toilet paper in the trash rather than flush it down the toilet. It brought back memories of the same practice in Vietnam and China! BTW.....my B.M.s don't smell!!!!! Ever since my J-pouch reconnection I've been blessed with non-odorous poop! Lucky me! [ more ]
Goody2shoes Most places I have been to don't have proper plumbing - Most Greek islands have septic tank not mains sewerage systems, (now that stinks when it gets emptied!!!!) with small bore pipes which block easily, so toilet paper in bin!! Cyprus the same - have never thought about it before LOL !!! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch is 8 years old and so happy I had this done! But have questions......
CD Christopher Derrick
Mike H I have the same joint pain with my UC but now that I have my J pouch it isnt as bad. The rheumatologists did not help, they will just put you on hmira or remicade. I wold try glucosimine and visit a pain management doctor. [ more ]
Jan Dollar Well put and I couldn't agree more! I know for my enteropathic arthritis, excercise and activity is a huge factor in how I feel. The meds can only take me so far. I think the movement of "slow food" and eating natural foods pulls us away from a predominatly processed foods diet, and without even trying, you wind up improving your overall health. I am sure that having autoimmune disease puts you at a higher risk to be sensitive to all sorts of things. Naturally, food would be a big factor. I... [ more ]
Nice Nurse I'm going out on a limb here so please avoid any bashing. I have several auto-immune disease which if you have UC, you know is common in our population. Fibromyalgia and osteoarthritis are two of them. I have not completely changed my life but improved it around 75-90% by changing my diet. For years after my jpouch surgery (I am now 18 years out) I avoided salads, undercooked veggies and the like because I feared blockages. I have been hospitalized three times in the last 5 years with... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
In search of a jpouch surgeon at Cleveland Clinic
S Subrew
Disneynut Yay! I'm so glad you are going! [ more ]
n/a Good luck! Take a small, digital recorder along and ask if you can record your consult - she'll say sure. Have a list of questions ready. Take along a history of your medications, as well as copies of any pertinent medical records, such as biopsies, scope reports, etc. Let us know how it goes! [ more ]
Subrew I have my appointment scheduled for a surgery consult with Dr Hull on Oct 2 at 8 am. Wish me luck and will keep you posted. [ more ]
See all 22 replies...
J-Pouch ForumsHelp! Need advice now!
Post-Surgical Nausea?
H Hayley14
Rachel88 Maybe try eating smaller meals? It took my body a long time to remember how to process food. I think those days without food when you are post-opt NPO can really mess with your system. Just take it slow and chew, chew, chew! [ more ]
liz11 possibly you may be getting dehydrated. Be sure to drink some electrolyte beverages.. but not sugary filled ones like gatoraide. Also, are you on any different drugs? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Proctitis and j pouch?!?
S sally85
sally85 Thanks so much Marie, I'm thinking when I have the j pouch to definently have the lining stripped away as I think it's my only option to avoid uc in the rectum but I just worry that I won't have muscle control :/ but it may be a risk I have to take as if do get the uc in the rectum I wouldn't be able to have steroids at Allan's I reacted so so badly to them when I had uc prior to the ileostomy and its literally left me scarred for life [ more ]
TE Marie Ask if you can take Canasa, mesalamine, suppositories while pregnant, to treat the UC going on inside or something similar. This should help with the bleeding. When you do get around to the j-pouch creation and they leave the 1-2 cm of rectal tissue at the cuff I would request they do a mucusometry, probably spelled wrong. That they scrape off the mucus lining before attaching the j-pouch to it. This lowers your chances of having further UC problems stemming from that 1-2 cm. I had UC in my... [ more ]
sally85 Gosh! I hope your feeling better now, I know what you mean about the pain I was in hospital a few weeks ago with it, Im not on any medication at the moment I probably should be for the bleeding I'm getting but who knows whats going on at the moment :/ I have been on masalasine though but that was a year and a half ago so I'm not sure why my levels are so high [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Urgent!
B Bergie77
Jan Dollar Not everyone has checked their notifications settings to be sure that they get an email when a PM has been sent. If that has not been done, the member would not know that they have a PM until they return to the site. Remember, a few months ago everyone's settings were reset to no notifications. So, we all have to go to our profiles to check it (that's why I have that "sticky" thread about it). Jan [ more ]
TE Marie Did you sent them private messages? [ more ]
See all 2 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.

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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).

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