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J-Pouch ForumsWomen's Health & Pregnancy
Recto-Vaginal Fistula - long term concern
LMacLMac
vstRN I had almost no fistula symptoms once a seton drain was placed. Also, the seton really did not bother me at all - I never felt it. It was more just the idea of what and where is was that bothered me. [ more ]
LMac Thanks CJ. I thought thickening things might help as well. I may have to try Metamucil. [ more ]
CJB Hi, I have had my small RV fistula for about 4 years now. My surgeon (and I) prefer not to mess with my otherwise perfect pouch. I had my pouch for about 12 years before I developed the fistula. I have no problems leaving it alone, as long as it leaves me alone also I take one large teaspoon of metamucil each morning to thicken things up. It greatly reduces any seepage through the fistula tract. I notice a big difference on days that I don't take it. Feel free to ask me any questions. CJ [ more ]
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J-Pouch ForumsOstomy & Skin
UOAA Conference
I itsnotsherry
itsnotsherry Anybody else going? [ more ]
itsnotsherry Thanks for the info Caty. Wish you were going to this one! [ more ]
Caty Hi, I attended the one in Reno, NV two years ago and it was excellent. We also got to see the surrounding area, especially Lake Tahoe. The conference had many excellent lectures, good food, and great vendors with lots of freebees. You'll have fun and meet a lot of people, all with ostomies. My husband and I are going to skip this one (even though we live in Florida) because once you've gone to one, you've pretty much seen it all. We'll probably go again down the road sometime. Caty [ more ]
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J-Pouch ForumsGeneral Discussion
jpouch
L ljk
kathy smith I agree with Randi, a j-pouch isn't often recommended with a Crohn's diagnosis. Even if it's inactive. kathy [ more ]
Randi M Again my biggest concern with you is that you have a Chron's diagnosis. It's great that you've been in remission 9+ years but that's no guarantee you'll never flare again. Plenty of patients have had long runs of remission followed by flares that lead to colectomy. I hate to see you turn in your current, healthy drug free condition for one that may not be optimal. This is probably a great debate topic amongst the experts. I noticed you have another thread running on this topic and others... [ more ]
ljk Randy you are right it is emotional the whole reason for jpouch surgery. surgeon did inform me that it may not even be possible to do with the scar tissue already existing. I am prepared for that. My rectum needs to come out regardless. [ more ]
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J-Pouch ForumsGeneral Discussion
Job interview I actually want to go on
Holly MHolly M
Holly M It is a challenge Roberta to work in a busy office. These last few months off of work has really helped me to learn how my j-pouch functions. I know I for sure I can't eat very much during the day or I will have an active bathroom day. So I eat a good (small) dinner , small breakfast and hardly anything for lunch. So far my first 3 days have gone well. I hope it keeps up. How are you doing? [ more ]
RLC Good to hear you are doing well, Holly! Roberta [ more ]
JillM Glad it went well! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Breastfeeding on antibiotics - nappy rash
S Sarahbp55
Sarahbp55 Thanks ladies, this feedback is really useful. I took him to the doctor who said I was doing the right thing, using thrush cream on his bottom. They can't be certain it's actually thrush without doing a swab and they can't do a swab when he is using thrush cream so the plan is to use the cream for 2 weeks and if still no better, then stop use and get a swab done. I am seeing my bowel doctors next Monday so will cover off issues about breastfeeding on antibiotics just in case it is thrush. [ more ]
Clicky I am still breastfeeding my 5 month old on long term Augmentin. I give him probiotic drops, seems to help. I use this kind http://www.walgreens.com/store...=prod6083377-product - I'm sure something similar will be available in the UK. Good luck! [ more ]
rachelraven That's a good thought. A probiotic for maintenance might be good, after you get the thrush under control. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
38 weeks pregnant and very anxious!
T Tripletmom+1
Clicky I had a csection 5 months ago and it was pretty easy, ESP after surviving the jpouch! I drove again after about 3-4 weeks. I had a general and there were no issues. Loving taking care of him! Just focus on the outcome! I hope it all goes really well - good luck to you ! [ more ]
Jan Dollar I had my c-section before my j-pouch, so can't speak to that, other than after the c-section, it was the first time in my life I was constipated! I remember during my c-section (I had an epidural), I was blabbing the whole time, saying dumb things like, "That feels like the retractors are in." My OB had the anesthesiologist give me a big dose of valium as soon as my son was delivered, I think to shut me up... You'll be fine! Jan [ more ]
JillM It's generally 6 weeks before you can drive, so you should be prepared for that. As for the c-section, it is weird, but doesn't hurt. It feels like pulling and pushing, but no pain. The key is not thinking about what they are doing. I think whatever they give you to block the pain also makes you a little "happy" as I remember being fully awake and aware, but a bit dreamy. [ more ]
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J-Pouch ForumsOstomy & Skin
Debating perm ileostomy
vanessavyvanessavy
JillM kmj - I wear all the same clothes I used to with my j-pouch with my ileo. I've never been into really low rise pants, but I don't wear granny pants either. I'll be going out tonight in skinny jeans. The key is to remember that no one is looking at your belly. Seriously, do you look at people's stomachs when walking the mall? Trust me, no one is looking at yours either unless you have fabulous abs and they are exposed If I'm going out in a really fitted outfit, I use Immodium to slow the... [ more ]
chiromancer Sounds to me as if you should have had counseling and or a support group early on. I assume you have an end ileo? Most people do well with the J pouch a few of us dont, so the odds are in your favor, but I assume you reasearched the ups and downs of the suregery and the results, if not you should look into it further before going forward. You dont say why you had the ileostomy in the first place so it is hard to comment on if this is a good idea from a medical standpoint. From a... [ more ]
ljk Please, Anyone who is reading or on here. I NEED ADVICE!!!!!! PLEASE help me!!!!!!!!!!!!!!!!!!! [ more ]
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J-Pouch ForumsPouchitis
Too many Follow-Up visits during the year
R Rocket
Rocket Thanks Jan, I use it off and on. I probably should be on Canasa more often for now. When I was really bad with pouchitis, I would take one before bed, and 1 after breakfast. At my last visit, my doctor wants me on it at just bedtime. [ more ]
Jan Dollar Boy, you have me really confused, since mesalamine is considered a maintenance drug, in addition to being useful for induction of remission. I have never seen anything about a drug tolerance occurring. But, it is true that frequent use of suppositories can cause anal irritation. When I was first treating my cuffitis, my GI had me on Canasa daily for a couple of months. Then he said to taper off to whatever frequency kept the symptoms at bay, so that could be as infrequent as once a week or... [ more ]
Rocket TE Marie, My doctor does not want me taking Canasa all the timd for just that reason, it may loose it being so effective. Rocket [ more ]
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J-Pouch ForumsPouchitis
Pouchitis or not?
A akteacher
TE Marie I'm glad you have pain pills saved. I know we aren't to take NSAID's but if things got really bad I have taken them before for my migraine headaches. Fortunately I'm on daily medication to prevent them and it works for the most part at keeping the bad ones away. Enough about me! I'm glad you get to see the top guys and hope they help you so when you go back home you don't have to rely on your PA for everything anymore. I suggest you get their email address or direct telephone call to their... [ more ]
akteacher I am visiting family for a few more weeks before heading back to AK. Once I get back home I will be back to no medical - only health aides. The dr. here would not treat the pouchitis (who knows why) but thankfully I did have some pain pills that I take with me everywhere but these are usually left over pills from previous hospitalizations & I use them VERY sparingly. Unfortunately, I can't take ibuprofen, motrin....only tylenol. That's the reason I save/horde any pain pills I happen to... [ more ]
TE Marie I thought you were up in AK where you only get to see the PA's. Sounds like you might as well be as the local doctor won't help! I was going to say can't she at least prescribe you a few pain pills until you get to CC...but it looks like you have that covered. Are you sure you have enough? I know we are never to take NSAID's but if you are in horrible paid and can not get anything else 800mg of ibuprofen is the prescription dose and will help you. Make sure you eat a lot with it or drink a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Daily Medication
J jwil44
phonix2g I think you need to find another Dr if this Dr isn't listening to what was working so well for you they should be prescribing you the same thing. It doesn't make sense if something was working to change it that is the whole purpose of changing meds to find the one that works. I don't understand the asacol at all my Dr said I would never need that again because it was specifically for colitis which obviously you don't have anymore. I just started VSL#3 and it works great and is made for... [ more ]
jwil44 Back again guys, Since my last visit here about medication, since then my new doctor since we've moved to Atlanta has changed up my medication an has given me lomotil which is bloating me really bad looks like I'm pregnant an it makes me feel loopy my stomach gurgles more an it feels as though the food is not digesting feels like its in my throat per se so I don't know what's going on. He also said why were you taking vsl#3 an tells me I should be on a drug to keep me in remission so he... [ more ]
Scott F Lomotil works much better than Imodium for me, but I generally only use it at bedtime (I don't need it during the day). I might take a dose if I'm going out somewhere where bathrooms are likely to be inconvenient. [ more ]
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J-Pouch ForumsGeneral Discussion
Can this surgery be done without giving blood transfusions?
A Andreita
Jan Dollar Well, the thing is that once it is designated, it is designated, and does not go through the same rigors. Plus, say you were able to give it away, and the next day something happened that you needed a transfusion? You'd be up **** creek. Happened to me. The day after my designated blood was tossed, I needed a transfusion. But, I wasn't up any creek, I just used anonymous donor blood. I was fine. Jan [ more ]
skn69 Really is a waste...Darn. No way to donate it if you don't need it? Seems dumb for it to litterally go down the drain. Sharon [ more ]
Jan Dollar They do not give your blood to someone else if you don't use yours. Mainly, it is because they designate it to you, and even if you don't use it during surgery, you may need it within that 30 days or so that it is viable. I know, seems like a waste. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
To the ER for this Pain around Stoma
G grandmaof1
TE Marie I have heard of it and forget what it is called. My daughter-in-law has a 2 year degree in massage and even looked into it for me. Some physical therapists and massage therapists do it and I forget what it's called at the moment. I looked it up and didn't find anyone too close to me that did it. I try self massage to put force on them to break them up when I feel them in my abdomen. Sorry I can't remember what it's called. [ more ]
tammykathleen Have either of you heard of adhesion massage? [ more ]
grandmaof1 I agree. I thought it was a blockage also. But so far so good. Yes, still having pain just not real bad. I have not taken anything for the pain. It comes quick and goes pretty quick also. But I remember back when I had female surgeries and was told the same thing about adhesion's. I am sure I have a boat load of adhesion's. I have had so many surgeries. I don't understand why I am so sick but I guess it happens. I am also another grandma. I should switch that to grandmaof2. I sure feel much... [ more ]
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J-Pouch ForumsGeneral Discussion
Getting Ready for J Pouch
N NathanM
dgtracy I just had my takedown April 30th, so I'm about a month and a half out... It was rough at first, i really didnt like the way things were..i went to the bathroom sooo much..15-20 times a day. I was really doom and gloom about it all, i still rather am but as of right now going to the bathroom has cut down alot..depending on what i eat really, sugary stuff makes me go more..Butt burn was a big complaint, going so much and wiping so much things got raw..people say to use calmoseptine as the... [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn Pre-Takedown?
M mxc508
Spooky I had of lot of mucus between steps, but it didn't cause me any discomfort. Assuming you have a loop ileo, some stool/digestive enzymes can pass through the pouch, which might be causing your problem, as the enzymes are quite acidic and can be very caustic on skin. In addition to keeping the area clean and dry, you can try a zinc-based ointment such as Calmoseptine; you can actually put some up right inside the anus (I hope you're not squeemish). Alternatively, if the area is constantly... [ more ]
dgtracy yeah its normal..mine was intermittent as well, i would keep it clean and usually have ointment to use as well. it def calms down. [ more ]
TinCan I had a good deal of mucus pass through but did not experience butt burn. Sounds unusual to me, but maybe others have had a similar experience. If in doubt, give your doctor a shout. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Jpouch Savvy OB in Massachusetts?
Alicia EAlicia E
Alicia E You both have been so helpful! I was 15 when I got sick and while I knew that "one day" I would be getting married and having children it was not in the foreseeable future. That time has arrived and I want to be as prepared as I can be just in case any complications or any unexpected situations arise. Thank you both! I'm sure I'll be in touch throughout the next couple of years as we start to work on getting pregnant. [ more ]
JillM BTW - I met with Dr Cohen before I got pregnant to discuss my situation with him. He was great. He even contacted one of his previous ostomy patients to see if she would talk with me and I did that. It was very helpful and reassuring. [ more ]
JessGoguen Hi Ladies, I am currently 5 mos pregnant and 6 1/2 mos post take down, we got pregnant a LOT faster than anticipated. We interviewed an OB to find what was best for us. I am seeing a regular OB and mid-wife combo through my doctors office. I find that having two advocates for me and my little one is helpful. I asked if they thought I would need a high risk OB due to my unique plumbing now that I have no large bowel and they felt confident they could work with me. If a problem should arise I... [ more ]
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J-Pouch ForumsGeneral Discussion
Post takedown #2
V vstRN
vstRN I actually don't remember the reasoning behind the high chance for stricturing. I guess that's one more thing to bring up with your surgeon. Could a dilation cause such severe pain this far out though? [ more ]
jeane wow...9 out of 10 people is a high amount for stricture formation. Did he tell you why that is? I certainly hope they can do something to help correct the stricture. As it is now, I go for repeat dilations for my stricture at the anastomosis so having the advancement surgery further concerns me as I bet I would fall into the 'stricture formation' population. [ more ]
vstRN Thank you all. I'm still continuing to have really severe pain. I've upped my pain meds a bit so was able to function a little better today but this was really not something I was expecting. My pouch seems to be working well though! Jeane - I know this surgery has been such a difficult decision for you. It's definitely hard going through several surgeries again - really hoping I'll be able to give you a positive update in a few weeks. My surgeon doesn't have a plan as far as the stricture... [ more ]
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J-Pouch ForumsGeneral Discussion
The Paleo Diet- Scientific American
suebearsuebear
CTBarrister Thank you for your response. I am not going to belabor the issue but I have gotten a similar response on my posts on a number of other issues in a number of other threads. On those occasions, the same sentiments as yours have been suggested to me by some other posters in PMs to me. I think you have in your response stumbled onto one reason why - a perception by the would be "censors" that some posters are not smart enough to evaluate that they are not required to follow the advice or opinion... [ more ]
Jan Dollar In theory, that makes a lot of sense, because that is how taking antibiotics thickens things up (a lot of volume of stool is bacteria). I am not sure that the total volume would be affected that much with the Paleo Diet, since there is the emphasis on fresh fruit and vegetables, which add a lot of bulk. So, probably a trade-off. My thinking is perhaps the quality of the output is improved, with less gas, less smell, slower transit from less irritation. That sort of thing. My personal... [ more ]
iHateColitis Thank you for that - nothing drives me crazier than when I ask a question and it is met by responses directing me to "figure out what works best for you." That's obvious and I don't need to be told that. I think anyone in search of information, for the most part, is smart enough to know that they aren't obligated to follow the advice given. They're just in search of data/evidence to process as they see fit. I've found your contributions to this thread rather enlightening so I don't know why... [ more ]
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J-Pouch ForumsPouchitis
A sign of Pouchitis?
LaviSinghLaviSingh
TE Marie LOL Liz, My friend's a GP and she gave herself a pap smear once! [ more ]
liz11 TE reading your post made me laugh. The infamous Dr. Shen once told me he scopes himself!!! [ more ]
TE Marie Flagyl isn't tolerated by some people at all and it could be making you feel tired too. I think the frequency would be greater with cuffitis. You could have hemorrhoids from straining causing the bleeding. You are a medical student and could test yourself for cuffitis. Put on a glove, lubricate your middle or index finger and ease it up to your rectal cuff, which shouldn't be more than 2" I'd guess. If it feels swollen, hurts and/or it feels bumpy/knotty it's probably cuffitis. OR you can... [ more ]
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J-Pouch ForumsGeneral Discussion
genetically modified grain
kathy smithkathy smith
Jan Dollar Not sure what it means though...most interesting is that the female gut was more durable by comparison! Ladies rule! Otherwise I guess maybe we have something else to worry about (genetically engineered pig slop), unless we are unlike pigs enough that it does not translate to humans. This at least does make sense to look into, as opposed to growing a third eye from these grains. I always that was a bit of a reach... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Trouble emptying j pouch
B Bergie77
Jan Dollar Yes, but scars can gradually contract over time. Outlet obstruction doesn't occur until it reaches a critical point. Plus, if there is some sort of chronic inflammation going on, like a fistula, cuffitis, or whatever, that can contribute to scar fibrosis. Jan [ more ]
Pkitty But Jan - doesn't scar tissue happen after the surgery? It appears that Rachelraven had narrowing in 2013 and had surgery in 1991. How can it be scar tissue in her case? [ more ]
CTBarrister Bergie77 you sent me a PM on this and I have responded. Hope what I suggested helps. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch discharge 4 weeks post-op
P Pluot
Pluot Thanks CC! To close the loop on this one, I saw my surgeon and he performed a rectal exam as well as a mini pouchoscope. Pouch was totally clear but there was mild irritation at the anastomosis line causing the bleeding. He says it's totally normal and nothing to worry about -- bleeding might continue after takedown but I won't notice and it shouldn't affect pouch behavior etc. phew! [ more ]
CeeeeCeeee I think the mucus tinged with blood, etc. is just the way in which our body cleans itself out. I know how shocked I was when this happened but found it to be part of the new normal for me. Your doc can reassure you when he checks you. I was surprised at how much mucus there was! I guess without it we would be plugged up! Oh, at times, my mucus was grey, also! Once reconnected we hardly notice the mucus but I guess it is still there. [ more ]
Pluot I'm back... Now there is definitely blood mixed in with the mucus about 50% of the time. I am getting nervous because it looks a lot like my rectal discharge when I had active proctitis after Step 1. Is there any way of distinguishing between cuffitis and normal post-op bleeding? I am going to call my surgeon tomorrow to ask but I am afraid he is going to put me off with the standard "it's normal to see a little blood." Also, anecdotally I had intercourse for the first time since having the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is there anyone one out there who really regrets the surgery?
Betty POOPBetty POOP
Solomin Hi, I have been following this discussion for a few days now, and I jsut wanted to add my experience. I am probably one of the earliest jpouch members to have the surgery. I had it at age 17 in January 1984. At the time, I had the symptoms of ulcerative colitis. I was losing blod with every bowel movement, but I did not have fever (never throughout), nor did I have any other symptoms (other than blod loss) when surgery was recommended. There were not many treatment options at this time, and... [ more ]
Adroen Yeah, I regret the surgery. Being held hostage by a JPouch was something I wouldn't wish on anyone. I'm still being punished for the Jpouch surgery, and can't get out of the situation i'm in. Make sure you have a kind surgeon who will get you out of pain when you need it. Or hell will take on a new meaning for you... At least you get to experience a bit of life again with the end ileo at the moment. Gratz on that working well for you. [ more ]
JillM Good for you! Now you can have a fun-filled summer! Let me know if you want tips on managing the ileo with swimming and summer activities! [ more ]
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J-Pouch ForumsGeneral Discussion
Oxycontin
P phonix2g
Jilly Jan, Thank you so much for clearing that up that confusion over oxy-this and oxy-that! i learned something new again today and again from you! you are so brilliant and indispensable! [ more ]
Scott F Jan, I agree that Tylenol helps oxycodone's effectiveness, and wasn't suggesting eliminating the Tylenol. If it's in a separate pill, though, there's a simpler, more secure path to weaning off the opiate (to just Tylenol). [ more ]
Jan Dollar I guess I misspoke and did not make myself clear. Oxycodone is the opiate that is contained in both Percocet and Oxycontin. Percocet and Oxycontin are brand names, and oxycodone is an ingredient. Percocet has added Tylenol. Oxycontin can be time release (for longer duration) or immediate release. Oxycodone is more potent than hydrocodone, which is the opiate in Vicodin and Norco. Phonix, one thing I didn't mention is that it appears you are taking the time release type (evry 12 hours)? If... [ more ]
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J-Pouch ForumsGeneral Discussion
Genetic testing to distinguish uc vs cd?
K killcolitis
killcolitis Thanks Jan, Her GI is at the forefront of genetics and IBD research. I emailed the results to her yesterday (we did them privately, and for a reason unrelated to IBD really so I was quite shocked). She responded with great interest but did say that they've recently published a paper about the fact that UC and CD share many more genes than expected and that this supports their theory of a continuum of diseases/intestinal inflammation rather than two distinct disease. She hasn't written back... [ more ]
Jan Dollar Wow, the world of diagnostics is definitely changing! But, no, I've never had any genetic or antibody tests for IBD. Not sure how it would have changed things for me either. I wasn't a pediatric patient when first diagnosed, but was young, 15. The one concern I have with the notion of a CD "biggie" in reference to a genetic marker, is how they determine what is a big deal and what is not. They have identified over 200 gene locations associated with Crohn's, and have not unraveled the... [ more ]
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J-Pouch ForumsGeneral Discussion
Uceris
P Pkitty
Jan Dollar Uceris would not pose the same dangers as prednisone during surgery, because it is topical, as opposed to systemic. It would be essentially the same as using hydrocortisone enemas before surgery. But, if you were on prednisone for more than a month or so in the past year, you'd likely need IV steroids in the perioperative perios, because of the possible risk of adrenal failure under the stress of surgery. So, while what you take right now does matter, what you've taken in the past matters... [ more ]
TE Marie I have big time panic attacks but none of the other symptoms. So they are probably right and it's nothing to worry about. Thanks Jan. *******Pkitty****** It is my understanding that long term prednisone use softens us internally. I'm sure I didn't say that right - sorry everyone. This may lead to 3 stage surgeries. There are some who are on prednisone at the time of surgery and taper off after it. [ more ]
rachelraven I was on high dose IV steroids at the time of surgery, and did ok, but know that's a concern. I'm guessing it probably won't work for J pouches. I can't digest anything enteric coated, and its time-released properties make me think it'd go right through me untouched, without my large bowel. [ more ]
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J-Pouch ForumsGeneral Discussion
Can you have a plastics closure for ostomy takedown?
P Pluot
Scott F It's perfectly appropriate to say (to the surgeon) that you're very concerned about the post-op appearance of the wound, and to ask what options there are to minimize the prominence of the scar. Once you start suggesting specific surgical techniques the tone of the conversation could take a turn for the worse, though turning it into a question could keep it comfortable. I might ask something like "is there anything you can do during the closure to minimize scarring?" [ more ]
Pluot Wow, mom2panda, that is beautiful! You're lucky your surgeon is so cutting edge Scott I agree there probably isnt a tactful way to bring it up... I will just ask how he does the closure and hope for the best I guess. [ more ]
mainebound My ostomy closure was stitched inside and glued and steri stripped on the outside. Perfect straight line and actually, 10 years later, I have to really look to find it [ more ]
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J-Pouch ForumsGeneral Discussion
Joint pain
JP Jeff P.
TinaC I have noticed that most of my Joint Pain has been associated with Dehydration. I try to drink close to a Gallon of water a day ... since, I lose a lot of water during the day ... I also make sure that I get those electrolytes as they too are lost during the day due to those frequent BM's. I had a trip two years ago to a Rheumatologist ... they said that it appears that I have Arthritis. Since drinking a lot of Water ... I have no symptoms (i.e., joint pain, sunken cheeks, wrinkles that I... [ more ]
skn69 Jeff, There are tons of tricks and hints and I am sure that dietary change is a biggie..one of the things that I have learned is that sunflower seed oil is very bad for joints (inflamatory) and that turmeric is good...oligo elements like gold and copper are helpful and lowering the bread/carb/sugar/wheat doesn't hurt any either... I don't have any magic bullit but my 'best' is regular, steady exercise of the painful joints and heat + massage if possible. Sharon [ more ]
Jan Dollar There are some who swear by the low starch diet to reduce inflammatory arthritis symptoms. I imagine that like anything else, it is individual, and aso depends on how much you are willing to alter your diet. http://www.spondylitis.org/about/diet_lowstarch.aspx All I know is that for myself, since being diagnosed with enteropathic arthritis a decade post colectomy, I cannot imagine NOT using drugs to treat it. My pain levels, range of motion, and functionality ave greatly improved since I... [ more ]
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J-Pouch ForumsGeneral Discussion
question
S skogie
Pkitty skogie - you had the surgery from what I see in your profile ~10 years ago so have you been having this incontinence problem for 10 years? [ more ]
Scott F For me that's always been a sign of pouchitis. First, though, in the early days after the surgery, you really need to try reasonable things to see what works for you. What are you doing now to manage your output? [ more ]
rachelraven Some people take Immodium, or Metamucil, so I'll let them chime in on that. (I never needed them.) Try not to eat past 6 pm or so (might help), and in the beginning, thickening foods helped slow things down for me (potatoes, noodles). And don't forget: Kegels. I Kegel'd like CRAZY in the beginning days. I think it helped. [ more ]
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J-Pouch ForumsGeneral Discussion
how to get docs to work together
N NJK
liz11 good luck with that one. I have tried that too and did ok with it until my local doc retired and my care was transferred to another local GI in the same center. I had been using my local GI for nutrition and anemia issues. But the local GI I have now seems to have some ego complex with my surgical and wound care being done at CC and Dr. Shen being involved. In fact, so much so, that my now local GI has refused to help me - despite my massive recent weight loss due to bacterial overgrowth. He... [ more ]
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J-Pouch ForumsGeneral Discussion
How to get off cipro?
Kevin_SKevin_S
Maddie123 Maybe you could try xifaxan? I use it once in a while otherwise I'm off meds. I used to be on Cipro for 2 years. Xifaxan is expensive but it's nice because you don't get as many side effects. [ more ]
n/a In addition, reduce/eliminate sugar and carbs. I've been off abx's for over a month - longest period I've been able to stay off them for over 2 years now. I believe this attempt has worked due to getting serious about carb and sugar reduction. I've been following the SCD diet, but there are several others out there such as the paleo that have worked for others. Best of luck. [ more ]
Jan Dollar I would wean off gradually, while starting probiotics at the same time, increasing those gradually. If you have read the threads here about C. difficile infections, you will know why it is a good idea to get off the Cipro if you can. Jan [ more ]
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J-Pouch ForumsPouchitis
Eating with Jpouch
C chalmersd
TinCan Personally I find it a lot easier just to focus on a well balanced diet that avoids problem foods. For me that means no raw fruits/vegetables (except bananas), alcohol, sugary things and fruit juice. When I stay away from the bad stuff and otherwise adhere to healthy choices, things usually work out pretty well. [ more ]
TE Marie Greek yogurt is good and has probiotics in it which is good for her. I make fruit/vegetable protein smoothies with PlantFusion protein mix. It is hypoallergenic everything and my Nutritionist suggested it for me. You can look it up on line and type in your zip code to find out where it is sold locally and/or you can buy on-line from Amazon and places like that. I mix in frozen or fresh fruits and toss in a veggie most of the time as well. I mix with ice cubes and milk. I'm not lactose... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Question about "antibiotic dependent pouchitis"
J j-poucher
Jan Dollar I do eat carbs, but it was not until I was way, way post op, like years, before I reduced them in my diet. I do not not know if reducing carbs wouls have been usefful early in the post op perios. It takes a long while to adapt. But, now, nearly 17 years later, I eat much less carbs than I used to. My results re goos, pouch function-wise. Jan [ more ]
boy's mom question for CT Barrister, Jan and others -- who are finding reducing sugars and carbs helpful -- are you just eating protein? My son (13 year old son, 2 months post take, already cycling thru antibiotics, entocort and enemas -though it seems cipro is the only one that helps until it stops) has ben told not to eat fruits and vegetables (except for bananas and applesauce) if he gives up carbs -- he will only have protein left...curious what your diet looks like? Thank you for genrously... [ more ]
CTBarrister Cipro and flagyl actually work on different bacteria which is why they are often prescribed in tandem, thus giving the user the "shotgun effect" of a larger swath of coverage. I think bacterial overgrowth as a term signifies the overgrowth of bacteria which in the particular person triggers an inflammatory response. However, there are plenty of people that have bacterial overgrowth and no inflammation. So what is undesirable for some people may not be for others. I think probably everyone... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Let's talk bidets.
P Pluot
AllyKat I have a Toto in my master bath which everyone fights over. My other bathroom has one from Costco. It was a steal and works just fine. [ more ]
kta Toto washlet. I've had it for 10 years and could not do without it. It broke once, last summer, I shipped it to the factory and it came back perfect. They even managed to get all the hard water deposits off of it. I think it cost about 125.00 to fix it. [ more ]
JJA Biobidet i3000. LOVE the enema feature. No outlet needed, hooks up to the hot water line on the nearby sink. Easy to install. $200, free shipping, eBay. Wish I'd had it for the first 17 years of the pouch! [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Going in for Scope
AlexisAlexis
Scott F An enema is a nuisance, nothing more (IMO) and shouldn't cause any appreciable discomfort. This presumes you don't have a fissure or stricture. [ more ]
Alexis what do i need to expect with the fleets enema they told me to take 2 hours before. [ more ]
mgmt10 It shouldn't hurt. A bit uncomfortable yes but not painful. I have had a couple scopes so far and they didn't hurt. Both were done in office without sedation. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Surgery today
G Ginabello
Ginabello Day 4 and I am starting to feel very overwhelmed and depressed! Will I ever get use to this seton? I am trying to stay positive but today is hard I feel tired and I have no appetite.. The home are nurse said the abscess looks clean and hardly any discharge.We are travelling to Italy in a little over a month and I guess I'm starting to worry about that to): [ more ]
Ginabello I have had no issues with the seton yet.. I'm just trying to keep area clean its hard with this packing.. Hopefully my doctors will say all is good on Wednesday..also I think I have 2 setons because it seems quite long so much to get use to): [ more ]
rachelraven You likely have a fistula, not a fissure (though it can start as such) if you have a seton. My seton has never caused me accidents. Are you having issues? When I was strictured/narrowed, I COULDN'T go, but now I'm going normally after 3 dilations. I've not had accidents in years, though, and I sleep through the night and have for years, too... So I may be in a different boat than you. Like today, I went 3x, and it's possible I'll go once more before bed. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Alcohol
B Blairisking
rachelraven Or do the obligatory flush when you're blasting one in the stall! Yes, eat your thickeners or try Immodium. Might help. And again, keep up on the water, too. Honestly. [ more ]
FXT Few immodiums and a heaping teaspoon of metamucil works for me. I avoid having full meals when drinking as well. Hard liquor drinks are also easier for me to drink but I do indulge in a few snakebites here and there without any issues. [ more ]
kathy smith Try eating bulking foods before going out - whatever has worked best for you. Rice and bagels work well for me. And try imodium as TE Marie suggested. Or just try to get over the noise thing. Everybody farts. (My friend, a coloned person, always turns up the radio very loud when he's using the toilet. You could carry around loud music..... ) kathy [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
prednisone and hair loss
D Dbone
FXT I was on Prednisone for years at one point and on varying doses that ranged from 5mg to 80mg. Hair loss is very common. I freaked out about it for a while before taking the clippers to the rest of the head. Now my head isnt one that looks great with a buzzcut but it is what it is. Havent looked back since. [ more ]
CTBarrister I started to lose my hair in my late 20s, and although I was taking prednisone heavily at the time, I have always attributed my hair loss to genetics. This is due to having a couple male cousins who have the same baldness pattern as me, a bald father and a bald maternal Grandfather. It kind of sucked because I had a tremendous mop of hair on my head that looked like David Cassidy's did back in the 1970s, and you hate to lose it. But fortunately, I have a proportional and geometrically... [ more ]
KangaRoe When I was on prednisone I used to lose so much hair around my temples and forehead area I used to wear a scarf so no one would notice. Everyone used to compliment me on my fashion statement and loved it. No one ever knew how much hair I had lost under the scarf. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Back to work
MurrayMurray
phonix2g Great to hear. Its stories like yours that give us all hope that things will always eventually getting better and we will all have enjoyable lives to live after the horrible battle with UC. Thanks for your story. [ more ]
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J-Pouch ForumsHelp! Need advice now!
corrective surgery to fix leak/sinus - not sure if I should do it
B bluemusic4us
bluemusic4us I will make an appointment to talk with him. He is the best doctor I have. But he has a very busy practice and is booked solid with appointments, colonoscopys and ERCPs and I don't think he would want to do a procedure that is "new" to him, just for me. I been giving a lot of thought to the outcome of this procedure. I'm really concerned about going back to the kind of routine I had pre-surgery. Frequent and urgent trips to the bathroom, feeling like you still have to go, weight loss,etc. [ more ]
Pouchomarx its not surgery, its a scope procedure that takes a few minutes. [ more ]
bluemusic4us Liz, That is an interesting idea. The surgeon I'm going to is Dr. Saclarides and he's highly regarded. My GI is a great doc, but I would think that surgery would best be done by a colorectal surgeon. But I can talk with my GI. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
To pack or not to pack?
G Ginabello
phonix2g I had a home health nurse and she was not as knowledgeable about things as my surgeon was. I knew when I started asking her things and she would give me the answer "well you shouldn't have to" or "I wouldn't if I were you". I would advise you trust your surgeon in what him or her directs you to do since this is their expertise and they deal with this stuff everyday. I don't think a lot of these home health nurses deal with a lot of jpouch patients. It seemed like my home health nurse's... [ more ]
rachelraven http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2780182/ This study showed no difference in healing time, and less discomfort with packing. Here's the segment: The Role of Packing of the Abscess Cavity "Packing of the abscess cavity is a common, but usually unnecessary, practice following incision and drainage. Packing may be beneficial at the time of abscess drainage by providing hemostasis of the inflamed, hypervascular abscess cavity. A well-drained abscess cavity rarely requires débridement... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
how long after takedown did u go back to work? im nervous...
dgtracydgtracy
kta I went back after 6 weeks. I am a teacher and that is when the school year started. I had had 4 surgeries in 8 months and I was wiped out. The third surgery was for an internal infection. The 4th was takedown. I think I would have been ok if not for the whole infection thing. They found it, I was forced (by insurance companies, I'm sure) to try to make it go away with intravenous antibiotics for one month. Studies show that does NOT work. I got so sick and weak that month- lost 30 lbs. in 30... [ more ]
cautious_cg hi I had my surgery in Feb this year (stage 1) and also in April (stage 2). Inbetween, I caught numerous infections, not to mention the severe diarrhea after stage 2. I went back to work this week (3rd June) and was nervous because of the bathroom frequency. The only thing I found was that being on my feet all day (retail Manager), I got tired fast and also had that 'feeling' of wanting to go constantly. I also discovered that if I eat, I am diving for the bathroom, which is also... [ more ]
ARP83 10 days....just make sure you can be close to a bathroom or wear adult diapers and dont over do it. It depends on your job and it's stress levels. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Dating with a J-Pouch
R Rocket
Former Member ❤️
Rocket Sharon, WOW. That is so very sad and cruel. What I hate most of all is they get away with it. Its too bad they do not get what they deserve. I used to believe in Kharma but do not anymore. I guess that old saying is true, "Bad things happen to Good People." And at the same time, the people who cause all this get away with it. I contacted my attorney yesterday so I have to first get my will and all my assets and make my brother the primary beneficiary of everything holding things in a trust... [ more ]
skn69 Rocket, My best freind (kind, bright, shiny, carissmatic person) made the same 'mistake' as you in marriage...he married a woman who was not adapted to him and his needs...things became very obvious within weeks but she was pregnant and he had longed for a baby for yrs...his son (my God-son) was the light of his life but his marriage was the darkness...she yell, screamed, insulted, belittled and incriminated him at every oppertunity, didn't care who was listening or where they were...he took... [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
Pain Meds
P phonix2g
Jan Dollar It is all very individual. But typically it should be only a few weeks at the most of major stuff after each surgery. Otherwise, you have something serious going on, or it has developed into a pain syndrome that has a life of its own, unrelated to the actual original cause of the pain. It does not matter if your surgeon thinks you are a junky. He probably won't. But, at some point he is going to want you to see a pain management specialist because it becomes out of his league. They sort of... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Increased frequency and pregancy
DB Darcy B
JJA Can't speak to pregnancy, since I adopted both my kiddos, but rectal pressure is a hallmark symptom for pouchitis for me-100% of the time I have experienced rectal pressure it has been pouchitis and when I have pouchitis I have this symptom is present 90% of the time. If the Flagyl is going to work, I usually find it works very quickly. Best of luck to you! [ more ]
Darcy B So i seen an GP at my doctors office and he started me on flagly. I see my regular doc today. My other concerns is that i seem to have constant rectal pressure. When i stand up it can be quite painful and sometimes sharp. I have not had this with other bouts of pouchitis. Anyone expierence something similar? [ more ]
Clicky I had pouchitis the entire pregnancy - it was a real issue and in the end we struggled to find the right antibiotic. It was watery every couple of hours. You seriously do not want to get dehydrated so why not see your doctor? Sounds like it could be pouchitis. Good luck and congratulations! [ more ]
See all 8 replies...

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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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