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J-Pouch ForumsPouchitis
Pouchitis
M michiecarmel1981
vanessavy Yea my biopsies were clean. Stool test was what came back positive for c.diff. [ more ]
michiecarmel1981 I was tested for them. Now I am on Flagle. My doctor scoped me on Thursday and took 10 biopies the problem was going up my pouch as the inside was not inflamed. I did stool samples. No results yet. Also the biopies will take up to two weeks to be back from the Pouchoscopy. It was a longer scope then usual then what I have done. She is looking to see if it could be a parisite. [ more ]
vanessavy yea sounds like a case of c.diff. I was on cipro and suprax when I got mine. It will only get worse if you have it and are on those antibiotics. Ask for PCR testing/stool test. [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium
F FrustratedButFighting
Jan Dollar No, don't take fiber. I tried it early on, but Metamucil caused gas and cramps for me. Citrucel was tolerated, but it did not reduce my trips to the toilet, just thickened the output. I had no problem with continence, so I just stopped taking fiber after about 6 weeks. It just made me feel full. Others swear by it though... Jan [ more ]
Scott F I believe Jan doesn't use psyllium/Metamucil. I use it a couple of times/day. Try with and without, a few days to a week each, and see what works better for you. [ more ]
FrustratedButFighting Jan- thanks so much for your reply!! I love my surgeon and his staff and on most things hey are quite knowledgable, but on this topic I felt better trusting those of you that "have been there"! I think there's some things you can't understand fully unless you actually have the jpouch. Haha. Thanks for the advice! I think once I make it back to teaching I will start with one a day and see how that goes. Do you take Metamucil or any fiber daily?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL#3??
SavannahSavannah
Dort My doctor has me taking the double strength version. I take 2 packets twice a day. I believe it has helped me. I mix the powder with applesauce. It needs to be refrigerated. My insurance paid for a three month supply but I have a feeling I may not get them to cover the cost again. It is very pricy. [ more ]
lablover My husband has done pretty well with VSL3. It is pricey ($49). [ more ]
Jan Dollar What sets VSL#3 apart from most of the others is that they actually did some studies with j-pouches, and that is a rare thing. But, even with that, I would not say that it is conclusively superior to any other probiotic. What the few, small studes showed was that if you take it after surgery, it delayed the first instance of pouchitis. http://www.ncbi.nlm.nih.gov/pubmed/16903771 If taken after treatment for pouchitis with antibiotics, it prolonged the period of remission for a small number... [ more ]
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J-Pouch ForumsGeneral Discussion
Burning, itching, and second guessing
XenophonXenophon
Dort I forgot to mention that I take 2 lomodil 4 times a day and Metamucil wafers 2 to 3 times a day [ more ]
Dort Hi Xenophon, I had my reversal surgery March 6th and I still experience diarrhea, butt burn and itching. I don't know if it is due to diet, stool consistency or infection. I recently had a sigmoidoscopy and I have pouchitis and cuffitis. I am taking VSL#3 DS (4 packets daily),Canasa suppository daily and Cipro. After two weeks of Cipro I was having tendonitis problems so I now taking Augmentin. I have very little butt burn and itching now although it is not totally gone away. I am also very... [ more ]
DON alias (Butt Blaster) Try installing a toilet bidet it was and is the best thing I did for itch and burning I no longer use creams I used to use 5 different ones. Anyway it cannot hurt. Purchase an inexpensive one it easily connects to toilet and if it helps you like it did me invest in a more advanced one that heats water ect. It takes a little getting used to especially with cold water but it stops my itch right away. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you use to retain stools?
I Ikh
Ikh yes, i urinate without pooing and yes i avoid toilet paper and just use bidet and delicate soap... I love bananas more than pastries so it's not a question for me breakfast with them. Good luck i hope that leakage is just some meaningless thing. [ more ]
Pluot hi Ikh, I would say the cramping/spasms are my only real complaint. I still have some difficulty urinating but that was the norm for me for weeks after each previous surgery so I can only assume it's normal. I'm a little freaked because today I've had some "spotting" in my underwear that looks like leakage but it's in the wrong place, if you know what I mean... but UC/surgery has taught me if it isn't imminently life threatening to not worry until the symptom has hung around for a few days. [ more ]
Ikh I had pancolitis for 12 years, never in remission, that's the reason I'm speculating the small intestine get that habit to keep my fluids; I forgot to say I'm trying to drink well out meals... I take also some gatorade (about 1 liter/day) and 500ml/1 liter of water... (I'm sincere I drink when I'm thirsty) [ more ]
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J-Pouch ForumsK-Pouch Korner
Problems catheterizing k pouch
E Edee
Edee Hi Sharon, Thanks for your reply. It's definitely worse trying when you;ve got a full pouch! I perch on the edge of the bath and it goes in a lot easier. I also place a spigot in the end of the cath, as I'm paranoid over having an accident and making a mess before I get the cath end to the toilet, so that helps me chill out more during intubation. Sometimes it will get a little stuck halfway and I get some more lube on and it slides in easier or I syringe some water upwards and the cath... [ more ]
skn69 Hi, It all depends on why it is blocking and how it is blocking...does the tube bend at then end when you push? Does it feel like a gut-punch when you try to get it in or more like a pain in your stoma? How is the leakage? Air or Gas? If you lean forward or backwards or twist sideways does it help? You might try aiming your tube either upwards, downwards or to either side to see if your valve has changed angle or trajectory???? You might find a new direction that you need to aim for...Mine... [ more ]
Edee Thanks Vanessa, I'll ask my surgeon when I see him next week. I've joined a k-pouch group o Facebook. Might see you there :-) [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Ivf ending in chemical pregnancy :( help needed!
K ksmarisa
andrea951 As for immune testing, I never looked into it. If your doctor is willing to test, I say go for it. I guess also make sure you insurance covers it. [ more ]
andrea951 Sorry you had such a poor outcome as far as fertilization. My clinic does ICSI a lot. 7 of the 9 blasts we had were a result of ICSI. I know there is a lot of controversy over this method, but I'm glad they used it for me. My husband has a greater amount of irregular shaped sperm. lol. [ more ]
ksmarisa Thanks so much Andrea, I'm so happy for you! Your post gives me hope It was a tough cycle. They retrieved 12 mature "good" eggs with only 2 fertilizing on their own. They called me the morning after asking if we wanted to do rescue icsi, which we did. However the rescue icsi has a way lower fertilization rate, so only 3 of the 10 fertilized and none of them were in good enough shape to freeze, which is why they did the 3 day transfer of a nice 8 cell embryo. I'm sure the RE is going to... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
intercourse and having children with fistulas
E elisha
skn69 A bad situation that will probably take a while to heal...you need to become 'creative' in the bedroom until it is resolved and as for the pregnancy issue, well that can happen in different ways...I wouldn't allow the fistula to stop you from having enjoyment with your hubby just 'differently' until things settle down. With all of my k pouch surgeries I have needed to learn a different set of sexual codes in order to keep our love life alive over the years...it was difficult to at first tell... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone ever been prescribed Omeprazole?
LS Lively Sloth
skn69 My doctor prescribes it every time that he puts me on high doses of anti-inflammatories so that they do not burn out my tummy...usually a 2 week run...the only side effect I have noticed is that I might not be digesting as well as I usually do when I am on them... Sharon [ more ]
Goody2shoes I have been taking omeprazole for a few years, it was first prescribed because I had a persistant cough (lasting more than a year) - but I do also have heartburn - and it helps with both. My sister has also been prescribed same for a persistant cough - but she won't take it !! The cough has something to do with digestion and heartburn. You should try it atleast. [ more ]
Jan Dollar It is worth a try. It is the generic form of Prilosec, which is available over the counter. Pretty safe stuff, particularly in the short term. The advantage is that if it works, it is an easy fix. If not, then you can cross it off your list, and so can your doctor. If it makes it worse, then that is more evidence that this is SIBO, because reduced stomach acid is a causative factor. If you refuse to try it, then you can earn yourself a reputation for being a difficult patient (complaining... [ more ]
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J-Pouch ForumsGeneral Discussion
After scope a few weeks ago i was great!..still kinda am but confused
dgtracydgtracy
n/a I'd guess that the scope did a little bit of dilation. Same thing occured to me a while back - the CRS said she dilated my narrowing with the scope, although it did not hurt like a normal dilation does. I was able to "go" better afterwards as well. She said to use a taper candle (see previous posts) to keep the area from narrowing again. You may want to ask your dr. about this as well. [ more ]
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J-Pouch ForumsGeneral Discussion
weight lifting and exercise advice please
K KeepFighting(Manny)
skn69 Manny, It all depends on you, your body and how you heal...my first dozen surgeries it took me only 6 weeks to start mild training and by 10 I was close to up to snuff...but in 2007 I had full pouch surgery and 6 weeks later I started my usual training...by the next week I had my first peri-stomal hernia...so it is also a question of age and nutrition and where your body is at now...take it slowly...it doesn't cost you anything to build up slowly and give your body a little slack....wait and... [ more ]
Jeff1959 I was able to resume lifting weights six weeks post takedown. At five weeks my doctor sent me for an ultra sound to make sure I was healed properly before he gave me the go ahead to start lifting. If you are not completely healed your risk of a hernia will increase. Good luck. [ more ]
vanessavy I went back to Crossfit 2.5 months post op from my bcir surgery. I did my WODs with 35lb then the following week i bumped it to my usual 65 for thrusters and cleans. 6 months post op I was deadlifting 180, no where near my PR though. Been stuck for almost 2 years now. I avoid crunches just because I think they are pointless. I do full situps. My max has been 55 then My abs cramp so when you cramp you are done and try another day to do more. Do a lot of planks to build core. I don't use... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium
Lynne2Lynne2
Jan Dollar Sure, 4 times a day, spaced out, more or less works, if you are taking that much (4 or more pills). But, the half-life is long enough that over a period of up to a week, it all levels out, and isn't that critical. if you are more likely to be consistent with once or twice a day dosing, it is a better fit than if you will be forgeting doses. What is mainly important, is consistency. If you are constantly changing your dose, trying to figure out your dose, you can wind up chasing your tail. [ more ]
Salmak if the peak blood levels are 4-6 hours after ingestion, wouldn't that suggest that optimium results are acheived by having a dose every 6 hours or so? [ more ]
Lynne2 Wow - this is all great info! Thank you for taking the time to provide it! I buy Costco brand loperamide 2 mg 400 caps for $5.49. [ more ]
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J-Pouch ForumsGeneral Discussion
Routine prep for flex sig. with a j pouch
SavannahSavannah
Savannah Thanks so much Jan and Lisa. It is so good to hear others experiences to compare with my own. I think I will go slow and easy with the mag. citrate and with the enemas. It would be stupid to worsen things with a prep! I will let folks know what the findings are after my scope. Hopefully, everything is OK with the pouch and it is simply doing its job more efficiently at this point. I do wish I could manage without pain meds for another chronic condition. The meds complicate matters a little... [ more ]
LisaT My prep has always been either clear liquids the day before, or nothing after midnight depending on the time of the procedure. [ more ]
Jan Dollar I do take the mag citrate, but not sure how necessary it is. Mostly, it is because I do not want to be on clear liquids all day on the day prior to the exam. I take 1/2 bottle and if I don't feel cleared out by that in a few hours, then I take the other half. Like you, I take some daily opiates, so I want to be proactive and get good and cleared out. With your recent partial obstruction, go easy. So, definitely do not chug the whole bottle of the mag citrate. Maybe 1/4 will be enough. Then... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain Killers Post Takedown
K KeepFighting(Manny)
phonix2g Its your Drs job to ween you off of any type of addictive pain meds. I would not suggest you just stop taking pain meds on your own if you've been on them for a while you will pay the price with a terrible withdrawal. I don't believe 5/325 of percocet is that big of a deal to stop I mean you should be weened off by going down to vicadin or norco and then off totally. I'm on 30mg of oxycontin every 12 hours and would never even think of just tossing them and put myself through that hell that... [ more ]
mgmt10 I was on Oxycontin and I tell you what....I had to chuck it in the garbage because I started liking it a little too much. I needed it after my first surgery but not so much after takedown (not sure why I even filled the script). That's when I threw it out and dealt with the little pain I had. That stuff is really addicting. [ more ]
KeepFighting(Manny) Thank you all so much for your input/advice and Jan i agreee. I understand now why my surgeon did not want me to continue taking percocet I just wish he wouldve explained it a little better. Liz, i will definitly be taking your advice and trying tylenol when the spasms take place as I do tend to see them more right after any food consuption but i must say I have seen a huge improvement over the last 24 hours. I have only had a handful of spasm attacks which would normally happen within the... [ more ]
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J-Pouch ForumsGeneral Discussion
Revision Surgery due to fistulas
E elisha
shawne h hi i to had an abcess which was thought to be a problem with the bartholin gland when cipro did not work my Dr. decided to drain it of course found it went right into what is left of my rectum. I seen a colo-rectal surg. at that point he tried some type of fibrogen glue with out much hope he said and of course did not work for me. I was only bothered with drainage when i was having problems with blockages othe r than that only gas is sometimes released from that area. As i was not interested... [ more ]
elisha Thanks for your reply. I am now in such a pickle...the surgeon where I live is who said I should go see Dr. Remzi at CC. My surgeon from CA that originally did my 3-step surgery (I sent him all the test results) says that because my fistulas are so low that a pouch revision isn't necessary - that a seton and then in three months a surgery from below would do the trick (without an ileostomy). Of course, I hope he's right...going to get another opinion in DC. [ more ]
n/a Sorry you're going through this, Elisha. I too have a fistula, in what sounds to be the same area. I did go to CC; I first saw Dr. Shen, who tried to close the fistula with doxycycline injections. Didn't work for me, but I understand it has worked for some other women. He then sent me to Dr. Hull, a CRS. She put in a draining seton, and also told me revision surgery was an option. However, it would involve a very large surgery which included a temporary ostomy. She also told me that there... [ more ]
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J-Pouch ForumsGeneral Discussion
Bananas and yogurts are saving my butt.. LITERALLY!
K KeepFighting(Manny)
rachelraven I can do milk, but I'm lactose intolerant, so I try to limit it. I use a dairy digestive, too, to help, yogurt doesnt bother me, and switched to almond milk for my milk, but I can't give up cheese! It's a weakness. But the drier/harder the cheese, the less problem for me. I can eat pretty much anything, but I avoid a lot of nuts, mushrooms, corn and stuff like that, cause I've had a narrowing in the past, and I just don't wanna deal with them getting stick in my pouch again. In the... [ more ]
dgtracy regarding the milk that seems to be user specific type of thing, i could NOT have milk before the surgery, it hurt me alot, after surgery i can do it without a single problem, i hadnt had milk in like 5 years prior to this. some people report gas or loose stool. best to try it no matter what just so you know. [ more ]
KeepFighting(Manny) Do you guys see any pros or cons with dairy? Primarily milk? [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking about going back to an osteomyelitis
LindsayLindsay
Jan Dollar You don't mention trying antispasmodics, like Levsin or Bentyl. They work differently than opiates and the opiate-like bowel slowers, lomotil and Imodium. Jan [ more ]
Lindsay Hi Scott sorry I don't have pouchitis I have major bowel spasms more so in the evening to the point where sometimes I lose control this has affected my sleep leaving me miserable, causing my arthritis to flare and and poor concentration and so forth I have tried everything from taking Tylenol 3, lomatil not eating dinner and nothing seems to help. It's has been going on for years and I am at the end of my rope. My gi doc wants me to wait and try more options but I am not sure i can cause my... [ more ]
Scott F Lindsay, you're not offering much background. The response is different if you've thoughtfully attempted to deal with the possible causes (e.g. untreated pouchitis) vs. hoping it will get better with time. You're certainly describing a miserable situation. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3DS
Holly MHolly M
dgtracy I got my VSL3 DS for 35.00 copay...i got 3 boxes with 60 count in each box and my directions say to take 1 sachet per day so i got 6 month supply at one time for 35.00...idk if it was a glitch or just good insurance? just grateful the way it turned out, [ more ]
Holly M Thanks everyone for your input. I started a new job and I qualify for their health insurance in a couple of months hopefully it is better than what I have now. And Tincan, I have been doing pretty good, no pouchitis recently, do have what I call little flares every now and then. My doc puts me on a 10 day round of Flagyl and it seems to do the trick for a few months. I am able to work and have a life again so that is positive. Still have to be careful what I eat because certain food gas me... [ more ]
TinCan If you think it helps, then reducing the dosage seems a reasonable compromise. A lot of people complain that VSL is expensive. But on a per cfu basis, the cost is on par with other popular probiotics. Hopefully you can get that coverage back. By the way, I recall you were fighting pouchitis a while back. Have you been able to keep that at bay? [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic Surgery 8/21
D dibelljw
vanessavy End can be converted to a Kpouch, they do them there. Always an option with a failed Jpouch. Dietz and Ashburn would be the ones to consult with at CC. [ more ]
Mike H If you have this surgery already scheduled wouldn't you have alread asked your surgeon or gi these questions. [ more ]
dibelljw My pouch was built wrong in 2002..It doesnt stand up straight and is too narrow at the top. I told Dr Church I trust him to do what he thinks is best while hes in there, but im leaning towards just telling him to take it out. Isnt an end ileostomy the end of any chance you have of reversing it? It seems like Ive been reading stuff that says an end doesnt mean your shutting down for good necessarily.. [ more ]
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J-Pouch ForumsGeneral Discussion
New J Poucher- My Story and questions regarding takedown recovery
K KeepFighting(Manny)
phonix2g Your best bet would be to find foods that are have a high iron level. That's the best way to absorb it. I believe you need a prescription but I'm not certain as I've never checked for any iron supplements OTC. I would assume the prescribed iron pills which I take 325mg of ferrous sulfate 2 times a day would be stronger than the supplements you would be able to just purchase without a prescription. I would still highly recommend setting up an appointment with a hematologist and have them test... [ more ]
KeepFighting(Manny) @Dgtracy Thank you so much for your reply, it's nice to know im not alone in my thinking habits as of late. As much as i disliked my ostomy bag, I miss it very much right now. I keep hearing the first month is the worse... Pain meds, Immodium and calmoseptine cream have become my new best friends. I can't wait till i begin feeling like the new and improved me, but you are correct.. Time is the biggest healer [ more ]
KeepFighting(Manny) @phonix2g, The last time i took blood levels was about a week and a half ago when i was released from the hospital and the doc said everything looked good.. so i am assuming he checked for anemia.. it is a good theory however as i have problems with anemia pre surgery when dealing with the UC.. No iron supplements were prescribed, is that something i can get over the counter if needed? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Red rash around old stoma site
P Pluot
Pluot Thanks Jan! [ more ]
Jan Dollar Should be OK. That might tell you if you are thinking in the right direction or not. Could even be a reaction the adhesive in the steri-strips, but you'd probably be able to tell if it was. Are you keeping it covered, or is it open to air? If it is covered, then fungal infection makes sense. Of course, probably would not hurt to tell your surgeon about your observations and how you intend to deal with it. He may say "fine, go ahead," or "NO, I want to see this!" Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
So confused
N Nroley
Jan Dollar This is why I suggest you ask them to talk to the doctor directly and get instructions from HIM, not the assistant, not the nurse, but the doctor who will be performing the scope. HE is the one who knows what he will be doing and what prep he needs for it. You are not being a difficult patient by finding out what is going on. It is one thing for them to tell you to just do something, but they should also be able to tell you WHY! To us, these procedures are common, but they really are not. [ more ]
CTBarrister Any time they see inflammation in the pouch they will look above the pouch to see what is going on. It's arguably malpractice if this is not done. Unfortunately the traditional scope that is used only enables a peek into the neoterminal ileum, and not the entire ileum. I think they are doing a different scope to go higher up, but what they should be doing on you is an MRI Enterography or a camera endoscopy. Those procedures enable visualization of the entire ileum. There is no scope that... [ more ]
Nroley First I talked to a medical assistant, then she told me I needed to talk to the nurse, that's who told me to do the whole prep. [ more ]
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J-Pouch ForumsGeneral Discussion
Scars! What to use and when!?
Stephaniesays91Stephaniesays91
FrustratedButFighting I use Vitamin E oil on mine everyday now and it seems to be working slowly but surely. After my first surgery, a friend of mine that is a plastic surgeon, told me that he always recommends neosporin as the best product. He also said the main thing is rubbing over the scar everyday to encourage blood flow I am sure. I followed this with my bikini line incision and it has worked great! Just a thought. [ more ]
skn69 Hydration and very mild massage...I wouldn't touch it for about 8-12 weeks and then just gently massage anything from olive oil to your favorite body lotion into it slowly 2-3xs a day...that encourages blood flow into the region and helps it to heal...but like every one here said...time is your best friend on this...mine split or infect and then heal on their own but take two yrs to fade to white. Start being too busy enjoying life to worry about it and before you know it they will be... [ more ]
Stephaniesays91 Because I'm a hairdresser I get all that sort of stuff at discount so I've managed to get bio oil for about 6 pounds! Problem is my scar decided not to heal and has busy open at the bottom just like last time!!! I have the worst luck Thanks for you help guys! [ more ]
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J-Pouch ForumsMen's Health
Fish oil - Prostate Cancer
D Dog
Steve Reid http://www.ncbi.nlm.nih.gov/pubmed/21762028 [ more ]
Steve Reid Not to denounce your (assumed to be well meaning) intentions, but as a person always concerned about accurate and unbiased reporting, suspicious of any "news" being reported, I feel there needs to be some more info available for a person to attain perspective, especially when the statement in question defies logic. As a person who's made a life of being totally aware of what I put in my body, I can't put any faith in an article telling me not to eat omega 3's. Having said that, the best... [ more ]
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J-Pouch ForumsGeneral Discussion
Update and return to work
P Pluot
phonix2g Im kind of amazed that you feel that good 2 weeks after your takedown that youre ready to go back to work fulltime. I had my takedown March 23rd and I am still recovering and not quite ready to return to work. I'm guessing you must of had a flawless surgery and recovery. Unfortunately I was supposed to have a 2 stage laprascopic surgery that didn't quite go as smooth as expected. My first surgery was supposed to be 4-6 hours and ended up finishishing 10 hours later. Then 4 days later back in... [ more ]
Lesandiego I was never given the instruction of 45 min prior to meals, but I will certainly give it a try. Thanks! [ more ]
CTBarrister Lesanddiego, Are you taking the Bentyl about 45 minutes before meals? The instructions I was given is take 45 minutes before meals and the complete kaboshing of the symptoms occurred when I did this. [ more ]
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J-Pouch ForumsPouchitis
Lose stools pouchitis or stomach bug
M meghspd
meghspd Yes .. Will do .. Lets see what he thinks or finds out. [ more ]
Jan Dollar Tricky stuff, to be sure. Sometimes these things are inter related, sometimes not. You can develop a neurological disorder independent of whatever else is going on. While it seems suspicious that the symptoms started after taking Cipro and continued with every other antibiotic you took, even topical(!?), but that does not rule out the tingling and numbness being a separate issue. I have severe spinal stenosis in my neck which caused tingling and numbness in my arm. I am taking numerous... [ more ]
meghspd Hey scottF I am right now talking to my physician . Coz I was seing him for blood in urine . But for pouchitis I see a gasteroenterologist . Thanks again [ more ]
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J-Pouch ForumsGeneral Discussion
post surgery leakage/spotting
S Salmak
Stephaniesays91 When I had my ileostomy I was exactly the same! It's totally normal, it's just the mucus your body normally produces to ease you poo on the way out to be blunt! Just your brain doesn't realise you missing the vital part! Haha I worried that it meant I wouldn't be able to hold anything in after my reversal too but so far I've managed just fine! Steph xoxo [ more ]
Jan Dollar Sounds normal to me. Seems like everyone complains about how difficult it is to control that mucous while you have your ileo diversion. In no way is it an indicator tat you will have incontinence after takedown. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
alcohol and j pouch
B Busting
dgtracy I would be interested to know what your drinking as well, i use to like relaxing on the couch with a crown and coke...mmmm maybe if i was feeling like a badass i would have crown and coke, but the crown would be XR, like an 80.00..only had the pleasure of drinking that twice. [ more ]
dgloria5 alcohol definitely slows me up. I only drink bloody Marys so not sure what wine would do. [ more ]
Salmak Back in my colon days (a whole two months ago!), I noticed that certain amounts of alcohol would slow me down. For instance, a couple of beers the night before would delay my morning BM/BMS by a couple of hours the next monring. After a big night, sometimes it would be 4pm/5pm in the afternoon the following day that I would have bms. Alternatively, certain alcohols seem to speed me up also. [ more ]
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J-Pouch ForumsGeneral Discussion
Coffee?
SavannahSavannah
dgtracy I like Scott F and UCwarrior2010 couldnt not tolerate coffee until now, just starting drinking it day before yesterday and when i didnt rush to the bathroom i was amazed. After my morning cup of coffee i have a water bottle i drink then probably fill it up twice more throughout the day on avg. [ more ]
UCWarrior2010 It's been about 4 months since my takedown and I drink 2-3 cups of coffee a day. I couldn't tolerate coffee while I still had my diseased colon in me. So, now I cherish every sip of my coffee because, for me, giving up coffee had been the hardest thing. But, yes, I do drink tons of water during the day as well. [ more ]
skn69 I live in Paris where espresso is king...I used to have my morning pot of dark roast coffee and then an espresso every hour til 8pm when I left work (every client that entered my office brought me a coffee before each rdv..) Usually around 8-10x day...I compensate with a large glass of water before and or after each because yes, coffee makes me pee, a lot...so I just make sure to drink enough water to compensate. My nephrologist told me that as long as I compensate then I am ok. For new... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Slow bowels
SavannahSavannah
rachelraven Grape juice works for me sometimes, too. [ more ]
vanessavy I use MOM, Lactulose solution usp (get from my GI) and a lot of red grape juice. The enzyme in the red grape makes pouches runny. I have to be runny with the type of pouch I have so I usually drink grape and orange juice mixed together. Moves things along. If I am really blocked up and don't want MOM I drink iced coffee real fast. [ more ]
Savannah Thanks for the advice about MOM. Others seem to like this too so I will try it if I need it [ more ]
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J-Pouch ForumsGeneral Discussion
Anti-bacterial spray?
I iHateColitis
AyrishGrl I just grab a nice size wad of TP, clean the seat good and proceed with my business. I am sure to wash my hands very well before leaving. If it is really bad I will try to see if there is another stall option available. I have purchased those travel Lysol bottle and they are easy enough to fit in a pocket. [ more ]
vanessavy Yea the main thing in bathrooms is c.diff but the only thing that kills c.diff is bleach so you would have to carry clorox wipes around. I am not that worried about bathrooms anymore after going through all of this colon removal nonsense. I just use TP if it is urine then take a shower when I get home after work as usual. [ more ]
Scott F I'm equally grossed out by the condition of many public toilets. In addition to the questionable fluids on the seat, the swamp-like puddles on the floor threaten pants and belts. That being said, their isn't much bacterial risk, I think, as long as you wash your hands well afterwards. Urine tends to be close to sterile, and (as gross as it sounds) most bacteria can't hurt you unless you swallow them in some quantity. There might be some viral risk (e.g. hepatitis), but antibacterial spray... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Ulcers above the j-pouch in small intestine
B BlmBlp
Jan Dollar Another safe laxative for regular use is Miralax. Jan [ more ]
CTBarrister Barbara, My GI told me to do a test run with the lactulose with antibiotics for 2 days and then one week without. It loosens up the stool quite a bit. It is prescribed for constipation, as is milk of magnesia. However lactulose has prebiotic properties as noted by Jan plus it also acidifies stool to treat the SIBO situation. I found that when I was taking lactulose with no antibiotics I really had to jack up the imodium count because I was kind of runny. Normally when I am taking... [ more ]
BlmBlp Due to my stricture, I have been using milk of magnesia to thin my stool on and off for some time (on the advice of my GI and with the approval of my colorectal surgeon). Perhaps, lactulose would be a better choice for me. [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Anti-Inflammatories
E EMiller
Jan Dollar No harm with one caveat: If you use NSAIDs more than occasionally (and even with occasional use, but with less caution), you need to be very aware of the risk of GI irritation and bleeding, which sometimes can be sudden and serious. If you have any bleeding or any significant GI upset associated with the use of NSAIDs, you need to stop them. You may be able to continue use with lower doses or frequencies, but maybe not. If you intend to use them regularly, it should be under a doctor's... [ more ]
mgmt10 I was always told NSAIDS are generally not good to take on a daily basis because they can increase the acid in your stomach and that may cause the lining in your stomach to become damaged (Ulcer). But if its for occasional pain relief, I like Aleve. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Watery, green stool - yucksorry :(
SallyJPouchSallyJPouch
rachelraven Fruity Pebbles cereal would turn my poo blazingly NEON green. Food color can absolutely affect stool color. [ more ]
Jan Dollar You have to remember that your stool is not clear to begin with, so any color additives will be combined with the color of the bile. Often it can be on the yellowish side, so adding blue makes green. The main thing is that a symptom like stool color is only significant if it is sustained, and if there are other symptoms associated with it. Jan [ more ]
Spooky rjmlakota, You'd be surprised what certain foods do to the stool. It could have been the blue chips. I've had green coloured stool from blue Gatorade (back when I used to drink it; I don't drink sports drinks these days due to all the other crap in them). I've also had greenish stool from black/purple wine gums, blueberries and blackberries. That's why it's always good to track back what you eat first before panicking - though I know it's hard! The first time I had ketchup when I had my... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Need some reminders pls? Pouchitis and Gas Questions
K Kia
Jan Dollar Be sure to have her take a look at your belly while standing up and laying down. I know that when you go in for a scope, you are laying down with just your butt hanging out by the time the doc comes in. So, an exam of your abdomen may not be on the menu unless you point out the issue. Jan [ more ]
Kia Ugh, I hope you are wrong Jan! lol. I guess I'll learn more at Wednesday's scope. [ more ]
Jan Dollar Is this new? Maybe you have a big incisional (ventral) hernia? It can enlarge over time. Just a thought, since you do not believe you have gas distention or obstruction. Jan [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Gas with the pouch and what helps?
SavannahSavannah
Savannah Thanks so much to everyone for the advice about SIBO and for the suggestion to try a FODMAP diet. I don't know if I can stick with such a diet as it seems so restrictive but I can be aware of low and high FODMAP foods and try to avoid as many of the highs as possible (for me). I do think I eat too much sugar. I feel deprived of the various fruits and veggies I love and then eat dark chocolate and chips which is not very healthy. At least I eat no fast food, red meat, fried foods, pastries... [ more ]
vanessavy Cut the bread out, carbs give gas. [ more ]
liz11 If you have SIBO, what helps is reducing the stuff that fuels the bad bacteria in your gut, and that is not just sugar. If you have it bad, it is treated with antibiotics along with strict dietary modifications. What has worked for me is xifaxan AND a strict low FODMAP diet. Also with you saying you are underweight.. is another SIBOish sign. What happens when SIBO is bad is that the bad bacteria take over and prevent absorption of proper nutrition. There is a breath test for SIBO, but it... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Hello - Help
HAPHAP
Scott F Some people seem to be having decent results with very low carb diets. I haven't had sufficient motivation to try it. If you do try it, I'd recommend using a probiotic like VSL, and giving it some time to work (i.e. change the diet well before stopping the antibiotics). [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Stool Consistency
M mads101
Scott F Two ideas: make sure you're drinking lots and lots of water, and you might try Metamucil/psyllium. Remember that non-pouchers use psyllium to combat constipation, even though we more often use it to turn liquid stool into something easier to manage. Use it carefully and monitor the results, of course. [ more ]
rachelraven Some people on certain diets shouldn't take it, but black strap molasses has a super iron content, and I take it from time to time to increase my iron level. [ more ]
Lesandiego I noticed on your profile that you take iron. What type/form of Iron are you taking? Iron will cause constipation. I was recently diagnosed as anemic. I dreaded having to take iron since it caused me a lot of problems when I was pregnant with my 2nd child back in the 1980's. So, yesterday while I was shopping for anything that contained a lot of iron in some form of food, I picked up a box of Corn Chex cereal. Corn Chex cereal apparently adds vitamins and minerals to the ingredients. Just... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Support to vary my diet
SavannahSavannah
Nroley Ah, I hate that feeling of being too afraid to eat something you know you love. I would introduce one new food at a time and eat only a few bites of the new food, then if there is no problem slowly increase how much each time. Good luck [ more ]
Lesandiego Keep a food diary. You will soon learn what gives you issues. I am not a fruit lover, but I eat grapes and bananas with no issues. I love salad (lettuce, cucumbers, tomatoes) and have never had an issue with blockage, not even when I had my ileostomy. What I did learn from my food diary was that dairy will cause me diarrhea. I only kept a food diary for the first 2 months and tried eating pretty much everything I love during that period of time. Having dairy issues does not stop me from... [ more ]
Savannah Thankyou so much for the support. I am going to do just as you say. Trying more things in moderation. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Considering permanent end Ileostomy from J-Pouch, will you share your stories?
K Kirtymusic
sjh2489 BillV, I will definitely look into the BCIR procedure- I didn't even know that was an option so thank you for letting me know! Stephen [ more ]
BillV Due to constant irritation and dysplasia in the perianal area, my gastroenterologist recommended removal of my J pouch and to have an end ileostomy. I wanted to avoid the bag if possible and discovered the BCIR procedure (a modification of the K pouch). I had the BCIR surgery 4 months ago at Palms of Pasadena Hospital in Florida and now am realizing the advantages of thus procedure. Palms has an excellent web site which has lots of information on the procedure. I wish you the best on... [ more ]
sjh2489 Hi Kirtymusic, I seem to be in a very similar situation to what you were in not too long ago, with the exception that I was now diagnosed with Crohns instead of UC. No meds seem to be working and I think I'm ready for surgery. I was wondering if you ended up having the surgery and if your doctor gave you any advice/ input regarding having this surgery? Thanks, Stephen [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Pouch Disconnection/ Removal?
sjh2489sjh2489
sjh2489 Wow. You have all been very helpful and I really appreciate all of your input. I'll talk to my doctor about Remicade tomorrow...I'm still a little apprehensive as it just makes me uneasy knowing the possible side effects but I will definitely listen to his opinion on the matter because the thought of another major operation doesn't exactly sound pleasant right now, especially if there is no guarantee that it will solve the problem and could even potentially make it worse. Thank you for your... [ more ]
liz11 Stephen, it is my understanding from CC docs that the patients they worry about the most are those with crohns who get their jpouches removed. Why? Because once the jpouch is out, if crohms remains active or starts up later... then it only has valuable parts of your small intestine to destroy. Potentially leading to short gut syndrome. So if you keep the jpouch and try to control the crohms medically, then you can preserve more of the small intestine. Taking out the jpouch does not eliminate... [ more ]
LisaT I was in the hospital for 19 days last Sept. and finally diagnosed with Crohn's. Initially, I had UC in 1995, j-pouch, and YEARS of excellent life. Then, out of the blue, I became sicker and sicker. I had a heart to heart with my long time colorectal doc. and he said that Remicade was worth a shot. He explained that pouch excision is a serious operation. I'm doing pretty well on it. No side effects and my GI doc believes that the increased risk for infections is minimal. I am planning to go... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Abdominal Pain 7 weeks post take down
M mehoffma
phonix2g Yeah I also think its normal to have abdominal pain. Just remember everything inside there has been readjusted so things are in places that they were never intended to be. I am 5 months post takedown and still have a significant amount of abdominal and rectum pain but realize that all comes with the territory. I do believe in pain medicine if used correctly because less of a chance of stomach ulcers but if abused more of a chance of liver problems. I would definitely bring it to your Drs... [ more ]
beucfree I think some pain is normal. May be not constant pain, but if it comes in waves, then it is probably normal. I would call surgeon to be safe. If possible, stay away from Advil. Have your surgeon prescribe a different pain killer. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
What do I risk by living with it?
GinLynGinLyn
CJB I'm not even sure why I don't need a seton. Maybe RV fistulas are different than other fistulas? I'm pretty sure I had an abscess that burst and is now my fistula.My surgeon found it strange since it was at least 10 years afer my surgery when it occured. But the tract remains open and I haven't had a single issue with it (besides the obvious fistula symptoms, of course). I know the tract can heal just like an earring hole in your ear, which pretty much never closes either. Maybe I am just... [ more ]
rachelraven Just to say, had a patient today who has had issues with perianal abscesses over the past few years. The abscessing keeps making him septic, periodically, and he winds up in the ICU with the need for BP support, and an OR I&D (cutting, cleaning out, and packing) under anesthesia each time. So... Leaving things go *may* be ok, but if you're like this fella, maybe not. [ more ]
n/a GinLyn, I'm so sorry you have another one of these buggers. I've closely followed the story of your other fistula repair and have been rooting for you. My CRS at Cleveland Clinic said she has a number of patients who have decided to just live with their fistula/setons. Without a seton, however, there would always be the worry of repeat abscessing. I agree with others - the draining seton isn't much of a problem physically, depending on where it's located. In addition, it seems to be the case... [ more ]
See all 15 replies...

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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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