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J-Pouch ForumsHelp! Need advice now!
Feeling so lost, please help!
EricEric
liz11 The products josh mentioned are good. But taste DISGUSTING. I have tried ceralyte.. it is a true WHO solution. But I couldn't tolerate the taste. I now use Jianis Brothers packages of oral rehydration salts and mix them with crystal lite. This is very cheap too. That is ALL I drink (well other than the occasional wine or beer!) Also yes.. peptamen. I was on that with that ileo #3 that I wrote about earlier. Peptamen Prebio is the one Dr. Shen put me on. Extremely expensive, but he knew the... [ more ]
skn69 Hey sweetheart, Just been surfing and happened on your post...I am so sorry that this whole situation is not getting better but worse...I do know how bad it is and how bad it gets sweetheart and you need a close loved one to help you walk your way through this all. I started having those chest pains a couple years back...just like you I had started to clean my house when...Boom, chest pain, couldn't breath and then panic...turned out that in my case it was my galbladder that had gone... [ more ]
Goody2shoes You do have very positive thoughts underneath it all !! Try to be positive and stay positive. I wouldn't worry about 'only' having 13 feet of small bowel - that is 4 metres, and that is actually double the length of mine !! [ more ]
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J-Pouch ForumsGeneral Discussion
Do other UC symptoms carry over after j pouch?
JR Jen R
ActiveUC'er I went to a rheumatologist at Cleveland Clinic. She saw the vaginal ulcers I had (and my previous bloodwork). I went over my arthritis issues, mouth ulcers, and pydoderma gangrenosum. Her determination was that I extra-intestinal manisfestations of IBD. Even though vaginal ulcers are rare for UC. Given my recent psycho surgical complications recently, my surgeon's want me rechecked for Bechets. Although that's not the most likely candidate. I'm going to need to have a rheumatologists input... [ more ]
Pluot ActiveUCer, did they ever look into a Behcet's diagnosis for you? I think I remember you mentioning it once a while back [ more ]
ActiveUC'er I have no colon (no jpouch yet...long story) and since having my colon removed I've developed horrible arthritis. Before being dx'ed with UC, I had horrible apothous ulcer outbreaks. I have one right now with about 30 sores. I can't eat/drink. It sucks. I've used a magic mouthwash in the past. It's lidocaine, diphenhydramin, and pepcid that you mix around in your mouth. I get it from my dr. It helps keep down inflammation and the lidocain is a nice pain killer. I just had something... [ more ]
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J-Pouch ForumsGeneral Discussion
imodium vs lomitol
R Rebe0505
Rebe0505 jan well i never have to concern myself with constipation..haha never has happened ever since colitus and now jpouch..thanks for explanation between two.. [ more ]
Jan Dollar The main ingredient in both lomotil and Imodium (loperamide) act in pretty much the same way. They are opioid derivatives that work in the opiate receptor for effect on the intestines. This is the side effect of all opiates that is usually a bad thing: constipation. They lack the pain relieving and euphoric effect in therapeutic doses. Even in high doses, there is no opiate withdrawal syndrome with loperamide, but there may be with lomotil, especially after high dose, long term use. That... [ more ]
jeffp Oh yeah, and I've never had a side effect from either! [ more ]
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J-Pouch ForumsGeneral Discussion
medical marijuana? What kind?
linalina
dgtracy I wish medical marinara was here in sc. I have to go through other avenues to get mine and even then it's only for nighttime because I don't feel the pouch as much and I don't focus on it as much so I drift off before I know it and I think I sleep a little longer. Still get up often though [ more ]
Jilly Hi there! I'm a BIG proponent of medical marijuana! I have so much info and so much to say about this that I'd rather chat than type. If you email or PM me with a phone number, I'll gladly give you a call! And I'm on Cymbalta too... Jilly [ more ]
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J-Pouch ForumsPouchitis
Flagyl alternative
J JD1943
JD1943 Thanks all. Flagyl alone has never worked for me. I have not tried Levaquin alone though. Cipro did not sit well with me. Docs have always prescribed two antibiotics at a time. I believe that my insurance does not cover Xifaxan, so I will possibly try Augmentin and Levaquin together the next time. [ more ]
clz81 I forgot to answer your other questions...I did not have any side effects with Cipro, Augmentin, or PB. I would take Cipro 500mg twice daily. I forget the Augmentin dosage (I think they are 750mg Amoxicilin/250mg clavulanate) and I would take twice daily. PB would be 2 tabs for me in the am and two in the pm. I never took more than one antibiotic at a time. [ more ]
Scott F Cipro usually works for me, but Flagyl and Xifaxan don't. Doxycycline can be helpful if there are signs of SIBO (e.g. major gassiness). Two antibiotics at once are normally reserved for antibiotic resistant pouchitis. I think it may be overkill. [ more ]
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J-Pouch ForumsGeneral Discussion
Question regarding fluid output after 1st surgery.
S Sgt4mb
Pluot It's completely normal to pass fluid out of the healing j-pouch. Your GI tract produces mucus and it's a sign of a healthy pouch to do so. [ more ]
Jan Dollar In regard to your temperature, it is not considered a fever until it is at least 99.6F. Your very low grade fevers could easily be due to dehydration, so be sure to keep pushing fluids, even if you think it increases your ileostomy output. Sip fluids all day long, instead of drinking a full glass quickly. But, continue to take your temperature to be sure it is not a rising trend. Typically, if you feel well, you are well, but sometimes an infection can sneak up on you. Jan [ more ]
Goody2shoes Do you have a loop ileostomy? It is normal to have fluid come out - I do. My j-pouch is disconnected, but I pass clear or white fluid several times a day With a loop ileostomy (which I had previously)it could be the same as above or sometimes output passed by the loop and out through anus, so would be faecal coloured! [ more ]
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J-Pouch ForumsGeneral Discussion
Best Fissure Treatment?
D DeathStalker
Scott F Just in case there's any confusion, the fiber Jan is taking about is not *insoluble* fiber, like raw veggies. [ more ]
Jan Dollar Many surgeons recommend fiber supplements, not for solving constipation, but for helping with the diarrhea. The idea is that the added fiber adds "substance" to the output, sort of like adding thickener. This gives more of a pudding like consistency, so it is less irritating and easier to retain. But, not all fiber is equally tolerated. Many of us do great with Metamucil or other psyllium husk supplements. But, some of us are sensitive to it and it causes excess gas and it is even irritating... [ more ]
DeathStalker Jan, Thanks for the info. It seems to have dissipated these past few days. The nupercainal worked wonders. I also went on a short cycle of Xifaxin antibiotic which also seems to have helped. As for fiber, is it ok to eat fiber post J-pouch surgery? At one point I ate quite a bit when I had colitis prior to my J-pouch surgery and it seemed to have made things worse. Now I'm nervous about giving it another shot even though the colon is gone. [ more ]
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J-Pouch ForumsGeneral Discussion
Newbie facing surgery
K KatKane
KatKane Thank you everyone for the information and Melissa I am glad you came out OK. be kind to yourself as well as gentle. Listen to your body and allow it to recover. This community has certainly helped me calm my fears. I am a fitness specialist and on my fett much of the day. My commute is long; an hour plus one way. So, how long did it take some of you to drive? I work for myself so not being able to work is a concern. i am trying everything I can to earn as much $$$ now so that i won't be too... [ more ]
Murray I had a two step. I had some complications after my first step due to a bleeder 12 pints. I spent 17 days in the hospital. I had my Ileo for 8 months with in a month I was up to my old tricks did a 4 day off road jeep trip, I wont say I wasn't tired. with in 2.5 months I was on the road working full days on a rail way job then off to a Hydro power job, I just tool a job driving a passenger coach. [ more ]
CeeeeCeeee I was in the hospital 6 days after Step 1 and Step 2. No complications. I was 60 years old and am now 73. My J-pouch is wonderful. I kept my ileostomy for a full year....by choice....because I could eat/drink everything and once I learned which products worked for me, I didn't have to change my baggie for a full week. In fact, I could have gone longer! I was reluctant to give up all that freedom for the unknown...a fully functioning J-pouch. Well, I'm glad I did because my "new normal" is... [ more ]
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J-Pouch ForumsPouchitis
fissures frequently, any ideas?
J jd9998
Rebe0505 jd9998 what are your symptoms?i may have same problem..i have bleeding if i go in with finger and apply anything and sometimes not always some blood on tissue and i have anal pain .. what is it you are using and what else can dr.do? [ more ]
JJA Get a bidet toilet seat! I almost never get them anymore since I got mine! [ more ]
kta Watch the straining when trying to empty your pouch, too. [ more ]
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J-Pouch ForumsGeneral Discussion
Passing Whole Pills
C CeeeeCeeee
Jan Dollar The edit feature is still there. It is the pencil eraser icon in the lower right. Jan [ more ]
CeeeeCeeee What happened to the "edit" button??? [ more ]
CeeeeCeeee Well, the drug in question is in timed release tablet form. And, it is generic. Both the pharmacist and the physician who prescribed it said, "You are just passing the shell of the tablet." You are still getting the medication. Hard for me to believe! I have so little trust, I guess!!!! [ more ]
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J-Pouch ForumsPouchitis
Help with SCD. Impossible not to eat carbohydrates. How do you guys do it?
C CPGuy
liz11 look at FODMAP it has scientific evidece behind it Dr. Shen at CC had me try it for bacterial overgrowth AND FODMAPS lets you eat some carbs you can have rice or corn pasta, rice rice bread (UDI is the best one I have found) and cereals without wheat or inulin (pre-biotic stuff) and other types of carbs. Just a big no no is wheat. so sure.. these carbs aren't the same... BUT they are better than no carbs! and you can get used to rice pasta in your spaghetti!!! [ more ]
CPGuy Thank you. [ more ]
Jan Dollar I agree, while most doctors agree that there is not much evidence that diet alone has a consistent effect on the disease, I haven't come across any who advised against experimenting. I think any doctor has had enough education to know that there are individual tolerances and the notion of food intolerance and/or dietary impact on gut flora/fauna is a growing trend that is not just junk science. Where they are at a loss is that they really cannot recommend one diet over another because the... [ more ]
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J-Pouch ForumsPouchitis
No antibiotics for 9 months+
R riskman4
riskman4 I may be living in a fool's paradise these last nine months but I like it. [ more ]
AllyKat Pentassa keeped me in remission for 3 years, then it gave me nasal pyolops so I switched to xifican for a few years. Then I flared! went on remi! then nothing but canassa for over 4 years. Recently flared, got back into remission and put myself back on Pentassa. I do fine on a half dose. Great stuff and congrats it's working for you. I also use probiotics and canassa. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Frightened fellow looking for encouragement after take-down surgery :(
F Fredrik
Scott F Most of us will never risk a fart off the toilet again, at least not on purpose. A few folks here seem to manage it, and I envy them. OTOH they often describe astonishing postures to accomplish this, so perhaps it's NSFW anyway. That means that the best way to minimize the nuisance of this is to minimize the gas production. You'll have to experiment, and re-experiment as your body changes over the coming months. Several big factors include diet, air swallowing, and soda consumption. People... [ more ]
Fredrik ElmerFudd, or Steve, my doctors didn't explain these things to me either properly. I understand exactly what you mean when you say that stretching is only one among multiple factors (gas, healing, bacteria). Say gas for instance, I do find it somewhat problematic. It's not that I've been particularly gassy after the operation but it causes other problems. The first one is that it can be quite painful as the gas goes down through my intestines . The second problem is that it can in a sense... [ more ]
Fredrik Hey everyone! I want to thank you all for reading my story and sharing your own experiences and tips. I am very sorry for not getting back to you sooner. Perhaps it's a good thing though. The last couple of days when I wasn't here talking to you guys I have been doing quite well. Day 8, I was in constant discomfort and it really broke me. It wasn't really pain. It was just constant discomfort and that can maybe be worse in a sense because it's not really treatable like pain. That day I cried... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scared of due to being pursponed
L L.DL
Lesandiego WOW! You have had a very unfortunate journey with so many complications. My prayers to you that your future will be less bumpy. [ more ]
Jan Dollar General discussion is a good place. May I suggest that you start a new paragraph for each new surgery or complication? It is difficult to follow the story in one huge flow of worrds like that. It seems that you have had a multitude of serious complications. Sometimes, minor misjudgements turn into huge complications. Once you are weakened, you are sort of "set up" for a cascade of unfortunate events. Having a Crohn's diagnosis would help make more sense of this, but it sounds like they have... [ more ]
L.DL So sorry Jan, again I'm new to this sight n well when I start writing I go on n on because a lot has happened n is still happening. I touched the post button by mistake but probably was a sign... I get carried away writing not because I want to but I would your opinion, or someone in a similar situation. Where do I post my long story? My story is complexed and I could benefit from the support on this sight. I'm just afraid of writing to much [ more ]
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J-Pouch ForumsGeneral Discussion
Just took my first dose of VSL#3 - what to expect?
B BethG1983
Scott F VSL won't directly reduce your BMs. It does seem to reduce the tendency to develop pouchitis, and perhaps reduce the severity of pouchitis if you have it. So if your situation is due to pouchitis or a bacterial imbalance in the gut VSL may help. [ more ]
samlc25 Does the Vsl reduce your bm's? What are the other positives? [ more ]
jodiloveslife I had more than normal gas the first couple days of taking it and then it tapered off. I religiously take it now because if I skip a day or two the pouch gets angry. Hope it works for you!! [ more ]
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J-Pouch ForumsGeneral Discussion
online dating and fistulas
M Maddie123
Maddie123 Hi Sharon, Sorry I didn't even see your post until now. This is really interesting, thanks so much for the advice. I guess I have probably limited myself with my own attitude. I will keep that in mind. [ more ]
skn69 Maddie, I was one of the 'fortunate ones' who found out very early that children would be nearly impossible (12yrs) and it destroyed my 'dating life'...it hung over my head like a sword and kept me running in the opposite direction as soon as a guy showed his 'family' tendencies...The good guys, nice guys, fatherly guys etc all got the short end of the stick as soon as the word 'kids' came up in the conversation...and I allowed a lot of good ones (they really are out there!) to get away.... [ more ]
Maddie123 Plout: Thanks for your reply. It was really helpful. I agree, people don't really want to hear all the details. I think that's a good idea to wait until it's going to be exclusive or more serious. Besides, I might only go on a few dates with someone and never see them again, and I wouldn't want them to know all that personal info about me. dawn58: That's a good point. I'll have to bring that up to my surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
My Story - FAP and Cancer
C Chuckus
Chuckus Ok, so I'm bumping my own post/thread..........want to keep this out there for all to see. I see so many stories/posts about negative things and I want to give a positive, give you hope. I've stared death in the face 3 times, actually died, and am still here. If I can do this, so can you. NEVER EVER surrender. FIGHT! I believe a positive attitude makes a difference no matter your circumstance, we can't control our bodies or how they react but we can control our attitude and try and have a... [ more ]
Pouchomarx My wife left me too after all my issues. [ more ]
mgmt10 Charlie, You are a strong man. Thank you for sharing your story. Your doctors sound amazing. Very sorry about your marriage....illness seems to be one of the biggest strains on a marriage...I think even more so than money. All the best to you always! [ more ]
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J-Pouch ForumsGeneral Discussion
Dont know what to do :/
S sally85
Rebe0505 hi if sally85 you go ahead and have tummy tuck would love to know how it goes..for years i have wanted to do that..operation messed my lower tummy up a bit..kind of not symetrical..just the way i healed i guess? dr. shen was totally against my screwing around said it was too risky for me..could get infections and so on..so i have not gone..and having gone through 7 years on antibiotics for pouchitis/bacteria overgrowth i was afraid to make anything worse.. wondering if anyone else has had... [ more ]
Jan Dollar Yes. Jan [ more ]
sally85 Thanks so much for your reply jan, ive got my next consultant appointment next month gives me some time to think, other than the increased chance of infertility, are most people able to carry a child in they do get pregnant after j pouch surgery, hernia repair and tummy tuck? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post takedown SEVERE pain & weight loss
Z ZEWKREWMOM
mgmt10 He may have a stricture (scar tissue narrowing the anal passage). I developed one about a month after my takedown and I did a lot of straining and it was painful. Do you know if they checked him for one? If the narrowing isn't too far up it can be detected with a digital exam. I recommend him seeing his surgeon. Any issues so soon after surgery should be addressed by the surgeon. People in the ER probably wouldn't have a clue. Hope he gets it figured out soon. [ more ]
suebear His recovery, at this point, is not normal. He should not have to strain, and should not be in so much pain. He needs to see either his surgeon or a GI. This could be a combination of several things; cuffitis and possibly a stricture. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Strange question
Natisha1971Natisha1971
Jan Dollar I think it is just an individual sensitivity. However, sometimes the trauma of intestinal surgery triggers the sensitivity/intolerance. The immune system responds to a great many things. If she thinks the mint reaction might be due to the artificial sweetener, she can try something else with the same sweetener and see if she has the same reaction. Otherwise, it could be the specific combination in the mint or another ingredient. Jan [ more ]
suebear Mints don't do this to me. Sue [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pouchitis and vaginal pain
betsaroniebetsaronie
CJB Yes, I too will absolutely feel pain/discomfort in my vagina whenever my pouch is inflammed or otherwise mis-behaving. Likewise, my pouch never seems happy when I am ovulating or have period cramps. The pouch and vagina (at least in my case) are so close together that I feel as if they are now one organ. It is often hard to know where the pain is coming from. Hot baths always help. CJ [ more ]
Pluot This makes sense to me. The pouch is right 'behind' the vagina in your pelvis, so if the pouch is inflamed it could be irritated by jostling from intercourse. I personally haven't experienced this (or pouchitis) but when I still had my rectum I had pain from intercourse when the rectum was inflamed. Same place, different organ [ more ]
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J-Pouch ForumsGeneral Discussion
GI Doctors?
F FrustratedButFighting
Scott F I'm pretty sure this is a miscommunication. One possibility that comes to mind is that you may be getting connected with the surgeons instead of the gastroenterologists. Good luck. [ more ]
FrustratedButFighting I actually had the referral submitted as well as orders from another Hopkins doctor- they still told me no luck! I was well aware I would need to go for a consult first before getting scopes done, but apparently that was not an option even. Luckily, my surgeon from Pittsburgh is awesome and his office is *hopefully* getting me on the right track to someone here locally who will provide the care for me. Thanks for your input! [ more ]
Jan Dollar Yes. I always have to be seen on a consult basis for a first visit with a GI. THEN, he orders whatever tests are necessary. You may even need a referral from your primary doctor or your prior GI, since self referral is often not an option. In that case, all you need to do is call or email your primary or prior GI to send the referral. Should not be a problem. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Watery stools
C CaryO
Jan Dollar Sounds like you have/had a partial obstruction. Be sure to drink lots of fluids (stay away from sweet drinks/juices- just increases diarrhea). Tea, broths, stuff like that are great. Avoid a lot of solid food right now, and just go with what appeals to you, in modest portions. Give it a few days and you should be turning the corner. Call your doctor if you have a high fever, are vomiting, passing blood or have increasing abdominal pain. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
LOWER BACK THROBBING ???
PouchomarxPouchomarx
Nomoremeds I had terrible lower back pain that would come and go. At that time, I swore it was nerve pain/damage. I also had a sinus/leak. I opted for a temp ileostomy in November and the back/nerve pain went away. Point is, the sinus can cause all sorts of problems. It's no coincidence. [ more ]
Scott F I suspect that the connection between colectomy and kidney stones would be the tendency to get dehydrated. Stones form when the stuff they're made of gets more concentrated, as it does when we're dry. [ more ]
Mike H I was having the same back pain for a couple weeks so I went to my urologist because I thought it may be a kidney infection. I found out that not having a colon is a reason for higher rate of kidney stones and thats what it turned out to be. I passed three of the darn things in 2 weeks and only had lower back pain. Weird but just a thought. [ more ]
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J-Pouch ForumsHelp! Need advice now!
is this fact?
pouchingtonpouchington
Jan Dollar 1-2 cm is the normal length. Some people wind up with 10-20 cm, basically half their rectum or more, which can lead to some pretty bad proctitis, not to mention a hard to reach suture line. This is not typical. Jan [ more ]
pouchington bo shen said my cuff was between one and two cm... [ more ]
Jan Dollar I did fail to mention that if you have an unusually long rectal cuff, it would be possible that the suture line would be beyond the reach of a finger. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Analgesic Cream Recommendation?
D DeathStalker
dcpropilot Try Savlon. [ more ]
DeathStalker Found it! Was at the bottom of my old ostomy kit! It was Nupercainal. Next to Calmoseptine, this stuff was a must for numbing. [ more ]
DeathStalker Hi Marianne. You're right. We "graduated" from J-Pouch surgery around the same time. This forum was such a godsend for me. I wish I could give back more to newcomers but I get so bogged down with the kids, teaching, etc. I've got to make a better effort. It's amazing how over time the body recovers from the loss of such a huge organ. Never thought I'd be where I am now. As for the cream, true Calmoseptine is definitely my go-to cream as well. I still use it as a preventative ointment. Just... [ more ]
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J-Pouch ForumsGeneral Discussion
Diet, ideas for digesting veggies & fruit
MI Mateo in Brooklyn
dcpropilot I find it's mainly things that don't digest. Potato skins, carrots, onions. Nuts, popcorn, and seeds are also havoc. If you are having trouble with pouch output, eat an apple. I've found an apple as a good way to flush the pouch and get things moving. [ more ]
Mateo in Brooklyn Thanks for the feedback, I like the ideas, particularly eating the veggies along with carbs, and doing smoothies. it is sometimes just easier to over-carb it, which I am trying to avoid [ more ]
lholdem I'm in the same boat... my diet used to center around fruits and veggies but now they seem to be so much harder on my system. It seems like it's mostly due to the insoluble fiber? I just got a juicer and I'm wondering if I'm getting the same benefits from the fruits and veggies, just eliminating the fiber. Anybody know? [ more ]
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J-Pouch ForumsGeneral Discussion
Pressure Down Below - Cuffitis or Fissure?
D DeathStalker
DeathStalker Never did any dilations. The thought of them scares me Seems like aside from these, the only treatments are numbing creams, sitz baths, time, and nifedipine creams. [ more ]
jeane Could very well be...when mine acts up all the other symptoms you are describing seem to go hand in hand. Hope you get resolution soon. I have had about 5 dilations since my original surgery in 2011, with the last one being about 6 months ago. This one has helped the most. I know, however, that my anastomosis opening is smaller than the average of others who have a jpouch. My GI also seems to think the lack of blood flow due to possible ischemia also causes some of the anal issues I have. On... [ more ]
DeathStalker jeane, definitely feels like a stricture too. The area is really tight. Doesn't seem to want to loosen up enough to heal. [ more ]
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J-Pouch ForumsGeneral Discussion
Gas gas gas :(
lholdemlholdem
Lesandiego Most of what you are experiencing sounds normal to pregnancy and/or 4 months post TD. Heartburn is very typical with pregnancy (gas feeling extending up your torso). Maybe you also have a mild case of pouchitis that would explain why the probiotics are helping to relieve your symptoms. I was perfectly healthy when I was last pregnant (25 yrs ago), but I had the same pain around the torso you describe. I described the feeling as if somebody was squeezing me with a huge rubber band. BTW.... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Digestive enzymes and gas
HockadooHockadoo
winter wish Hi I take digestive enzymes Creon, the pharmacist said that sometimes it takes a bit for your body to adapt i.e. for gas to reduce. I still had problems with diarrhoea and gas but now take rotating antibiotics with the creon and I am much better. Also creon can work better when taking a proton pump inhibitor. [ more ]
Rocket I found that if I have severe cramps that takine Activated Charcoal really helps. I also put a heating pad on my gut where the pain is and lay down for a bit. Rocket [ more ]
n/a If I'm going to having a gas-producing meal, I'll take a digestive enzyme with my first bite of food. Whole Foods makes one called Wholezyme which I've used; now I'm using Source Naturals Daily Essential Enzymes. They seem to help - usually. Beano doesn't do much for me, either. Hope you find relief. [ more ]
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J-Pouch ForumsGeneral Discussion
Slippery Elm?
XenophonXenophon
tulsamom I use Thayer's slippery elm throat lozenges. All though they are kind of grainy, they work better on a sore throat than any of the slick candy ties. [ more ]
TinCan I have from time to time. When I had UC I used it as part of an enema when flaring. It would provide some symptomatic relief. I have also mixed it with hot water to make a tea. It may help with fairly minor irritations but not terribly effective for pouchitis - at least not for me. Any particular reason for asking? Best probiotic? I don't think anyone knows the answer to that - at least for the time being. [ more ]
FrustratedButFighting I have used PB8 since my surgery and I love it! I usually order it off amazon and it's not a bad price. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgeon Recommendations- Boston
suebearsuebear
Scott F Peter Mowschenson is who Mark Peppercorn sent me to originally. Peter was too conservative to take me on for a J-pouch, but that's generally a good thing in a surgeon. [ more ]
Mema 1 I used Dr. Peter Mowschenson from the Beth Israel Hospital, in Boston. I absolutely adore him, answers emails almost immediately and is very compassionate and caring. He appears to be very cool when you first meet him, but it's only because he's so busy. I had my surgery done in 2001, and he's still there for me when and if I need him. [ more ]
JessGoguen I had my 2 step at BIDMC with Dr. Poylin. I loved the team and nurses there. My surgery was in September of 2012. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Trying to conceive, don't know how to get help.
L Lee33
Jan Dollar I think if you go with the pelvic surgery angle, he can "get" that. Rectal dissection is in the area of the reproductive organs. Jan [ more ]
Lee33 Okay. I will try to proceed then with something. Called my gi doc to see what they thought, or if they can help me explain it to my gyn what a jpouch is. I feel strange trying to educate my doctor with studies and explanations but sometimes it is necessary. Or might be hunting a new doctor. [ more ]
Jan Dollar I believe that once you are at higher risk for infertility (pelvic surgery puts you there), the one year wait guide line is shortened to six months or so. This is especially true if you are around 30 years or more. It just wastes time that you could be undergoing testing. I'd see a fertility expert if it were me. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
itchy,painful/burning sensation areas of my body
K kk
kk Thanks Jan. So far only been to general physicians. [ more ]
Jan Dollar A dermatologist is a good place to start, if only to rule out a primary dermatologic disease. Since you are prone to rashes/eruptions triggered by a variety of events, this could well be related to an autoimmune disorder, so in the end, you may need a rheumatologist to be able to sort this out (unless you have already gone down that road...). Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Vsl3
C CathyA
CathyA Your right Dort the drs. office is re admitting the Rx because they didn't put ds, so fingers crossed. Cathy. All the Glory is Gods. [ more ]
Dort My insurance covers the VSL#3 DS (Double Strength) only. If you are able to take any VSL#3 product make sure you don't take at the same time as hot drinks/food or carbonated beverages and you keep it refrigerated. If you are taking antibiotics take it as far apart as possible. I wonder if you can get free samples from the VSL#3 manufacturer. I have no idea if it works but I figured it isn't doing me any harm. [ more ]
Scott F It's tricky to prove the value of a probiotic. The results are fuzzy, often something like "I didn't get sick." If you are prone to recurrent pouchitis, VSL might keep that at bay - it did so for me for a couple of years. I'm less certain of the value now that I have to be on antibiotics anyway, but I'd rather get recolonized (daily!) with a better mix of bacteria. [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
hair removal before ileostomy?
aka KNKLHEADaka KNKLHEAD
Jaypea I would suggest you get your ostomy site marked by a WOCN before you go about shaving, getting rid of hair. You need to make sure you are getting the right area. You should be marked prior to surgery anyway. [ more ]
skn69 There is a new Pulsed Light system for hair removal that does not use laser, no pain, no irritation and it can be used at any time on dark to dark blond hair. It is used every other week and that way the lag time is shorter...you need about 6 sessions or 12 weeks to get it done but you can buy the machine yourself and use it at home (I do)... I use it on the normal girl parts plus around my stoma to avoid the associated problems. Not sure where you can buy it in the U.S. but you could look... [ more ]
Pluot The problem is that you need multiple sessions of laser treatment to achieve semi-permanent/complete hair removal, and treatments are given at ~6 week intervals. So if your surgery is anytime in the near future it's too late. Also, the skin is quite sensitive and irritated for a few days or maybe a few weeks after the treatment, so I'm sure no surgeon would want to operate/create an ileo on skin that has recently had a laser treatment. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Night leaks
vweavervweaver
Jan Dollar I think that we just tend to get complacent, thinking that once we are settled in, that is it. But, the reality is that as we age, every part of our body ages. With that aging, comes changes and challenges we may or may not have anticipated. So, we just have to be willing to adapt. Otherwise, you'll just go crazy thinking that something is terribly wrong! Still, when you have a sudden change, you need to rule out something acute... Jan [ more ]
vweaver Well, I think it might be sugar. Saturday I had a handful of (high sugar)candies, and that night I had an accident. I had eaten nothing else that day that I hadn't eaten the past few days (without an issue). Sunday, no sugar, no accident. Assuming this is what it is, it's curious as to why it has become an issue- as I stated earlier, I had no night leak issues for the first 10+ years without avoiding any foods. I'll avoid high-sugar foods and candies for a couple of weeks and see what... [ more ]
n/a Something else to consider is possible cuffitis. Again, a pouchoscopy (or having your GI/surgeon do a quick exam) can confirm and treat with canasa and/or anucort suppositories. [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Surgery for prolapse
S Sandyj
kk So sorry to hear you are experiencing this. I know from experience what you are dealing with and it is not only painful but wears on ones nerves. Also keeps me confined to the bathroom anywhere from 10mins. to 45 mins. When I tell someone I am going to the bathroom to stop a movie/going somewhere (just a couple of examples) I say I do not know how long I will be b/c I never know till I go what issues I might have. I searched this site and doctors help. About 4yrs. ago while in bathroom I... [ more ]
liz11 tana can they not redo your jpouch? [ more ]
Tana I'm sorry that you are struggling with this. Apparently it is not an uncommon problem. I too have the same prolapse issue and was just released from Cleveland Clinic with a defication problem however I call it a blockage they call it constipation. The pain was horrible and I was there to do biofeedback and therapy while there they gave me a script for belladonna/opium suppository which I think made things motility wise worse. The doctors tell me that due to my pouch being so enlarged now and... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Muscle spasms
LC Lisa C
Former Member Could be Pouchitis or bacterial overgrowth. Are you running a fever? Are you passing gas? If its just muscle spams I've used Dicyclomine in the past it takes the edge off but won't solve it all. I could be something more like the start of One of the previous mentioned things. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
fissure ,now what!
R Rebe0505
Former Member I've used Nitroglycerin Ointment in the passed. Just don't try to light your farts on fire >.> here is a link I found on it. http://www.webmd.com/digestive...tment-topic-overview [ more ]
Rebe0505 today output seems more normal i think it had to do with me not eating foods that would cause any irritation thus for past few days ate limited things and no fruit.. but what is cream used for fissures? [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Getting Pregnant
PippiThePiratePippiThePirate
Clicky I was married 11 years and we adopted 2 kids! Never tried treatment - without trying we miraculously got pregnant and I am feeding him as I write this ! He's fabulous! Don't give up! I believe a committed yoga practice is what changed things for me but of course could not prove that! [ more ]
Lemon My husband and I tried for 4 1/2 years to get pregnant. I too had a hydro on my right tube and my IVF doc said that if I didn't take care of the hydro, my chances of IVF success were slim. He told me about the ESSURE procedure, which is a procedure used to block tubes for women who aren't good candidates for surgery. I had this done in order to block the fluid that was in my tube from draining into my uterus and killing any embryo that would be transferred during IVF. Long story short, I did... [ more ]
skn69 My experience goes back 30 yrs but after my k pouch surgeries I had a hard time getting pregnant ( I got married between surgery 2 & 3 and was pregnant for surgery 3...lost it post-op)...The HSG showed 1 tube blocked and my uterus folded over in 2...they thought that it was a congentital deformation)...funny thing was that a year after the HSG I got pregnant naturally. Same thing happened in my 30's after the 2nd HSG...got pregnant twice within the 3 years after it...my uterus couldn't... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Too Much Protein, Fissure?
K KeepFighting(Manny)
GinLyn Yes, what Liz said is true. If the pain is bad you can use a topical painkiller like Nupercainal, but don't self-diagnose because some things (like Prep H) can REALLY hurt! I also find that a really good diaper cream helps protect and heal it up; my favourite is Sudocrem if you can get it. Best, Gin [ more ]
Pluot It could be one. If so it sounds pretty mild compared to how people usually describe fissures ("broken glass" seems to come up a lot). In any case, whether it's a fissure or not, I think the first step is the same... modify your diet to encourage looser stools that are easier to pass. In the meantime, clean yourself very gently and use Sitz baths to soothe the area and promote healing. If it gets worse you can always visit your GI. I had a very mild fissure that resolved by itself by... [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Living with fistula
D dawn58
Clicky I think every fistula is different. I had to revert to an ileostomy due to fistula, cuff iris and pouch iris. The fistula pushed me over the edge but in combination with the other stuff. Living life much happier now! Good luck! [ more ]
GinLyn Been dealing with an R/V fistula for 3.5 years now. CJB is completely right, bulking up does help and sex is fine (although bathing afterward has been recommended to me). Some fistulas are more active and larger than others, and every fistula can act up more at different times. A lot of how you deal with it comes down to your attitude and how it is affecting your daily life. If I can answer any other questions, let me know. Gin [ more ]
dawn58 Hi CJ, I sent you a private message. I would like to email with you. Thanks. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
UC
dennyp3dennyp3
mgmt10 You say a "portion" of your rectum was removed. The more rectal cuff you have the more likely you could develop cuffitis. You will need to get checked out by your doctor preferably someone experienced with j pouches. [ more ]
Jan Dollar Yes, it is possible. In fact, it is one of the more common complications. It is called cuffitis, and is inflammation of the retained rectal cuff. You'll find a lot of posts here about it. Jan [ more ]
See all 2 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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