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J-Pouch ForumsGeneral Discussion
Few Questions/Help
G grandmaof1
grandmaof1 Thank you so much Jan. You are truly amazing. I never thought of some of those things. I have an appt with GI in November. And I made an appt with Surgeon for January 2. Maybe I can get in sooner. Thanks again, [ more ]
Jan Dollar First of all, searching past posts won't tell you when the time is right for you to give up on your pouch, so you were right to make a fresh post. It is an individual decision. The only common thread I've seen is that you should wait for a year minimum, to be sure you've waited out a reasonable period. To me, this sounds like intermittent partial obstructions. It is typical that diet has little effect in these sorts of instances. I think you've said your recent scope was normal. Correct me... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leaking
M Mark01
Lesandiego I agree with mainbound. Mine tapered off after a 7-day dose of Flagly. My doctor told me to take a probiotic. I cannot stand VSL#3, so I tried Align. After about 3-4 weeks of using Align (and no other meds), I have noticed a significant difference in my happiness with my J-Pouch. However, I do take 1 tablet of Tylenol PM at bedtime. I was taking Advil PM, but after about 2 weeks of taking it, it caused bleeding. [ more ]
Mark01 Thanks everyone [ more ]
Scott F If Imodium doesn't work for you, Lomotil may do a better job (it does for me). Lomotil is prescription-only. [ more ]
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J-Pouch ForumsGeneral Discussion
Inflammation Question
W winnie
rachelraven I had UC, and J pouch surgery years ago, and I do not carry abnormal inflammatory markers. [ more ]
Jan Dollar Actually, I don't think that is necessarily true as a general rule. Having a UC diagnosis should not mean that any injury or illness you may get would be worse or with a higher level of inflammation. I heal normally from an injury or other surgeries. I don't even believe that a UC diagnosis would mean that you should always have elevated inflammatory markers in your blood tests. If that were true, there would be little value in doing those tests. If you are in remission, with nothing going... [ more ]
CTBarrister I believe the answer is yes and the simple explanation for it is that the UC is gone, but the underlying autoimmune disorder which manifested in UC is not gone. I have inflammation in the pouch, I tend to swell like crazy whenever I am surgeried, and my skin is extremely sensitive and gets irritated/inflammed more than is normal. The inflammatory response is merely a manifestion of the autoimmune disorder. [ more ]
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J-Pouch ForumsGeneral Discussion
Poop Pills
Mental KaseMental Kase
vanessavy http://thefecaltransplantfoundation.org/?page_id=38 that is a list and there is a new trial going for Chron's and FMT on the list [ more ]
clouseau I did about 5 hours of research on fecal transplants as I believe I really need one with all my terrible bacteria that has been uncovered from testing. It is only approved in the US for c diff but there is a clinical trial going on for crohns but we don't qualify because of J pouches or in my case because of cancer also. There is a great web site for how to do on one's own, and suggestions by doctors who may aid you. www.thepowerofpoop . [ more ]
clouseau I am very interested in this as my bacteria is extremely bad. I will call the MD in Canada to see if I am a candidate even though I don't have c diff. Will let you know if I come up with anything. Please give us updates if someone finds out more. [ more ]
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J-Pouch ForumsGeneral Discussion
Intestinal Bacteria Linked to Rheumatoid Arthritis
C cassiecass
Saff ❤️
cassiecass Evening Jan You are welcome.I know alot of research is ongoing and when I see some results coming out makes my day. We need to know why and how in order to recieve proper care .I have endometriosis and the medication I took years ago did nothing for me .Random medication to me are a waste after my dealings with as I said endometriosis Try this link http://www.sciencedaily.com/re.../11/131105132031.htm I do think all goes haywire in the gut and that is where all autoimmune processes start. [ more ]
Jan Dollar Cassie, that link did not work for me, but I found the article on a Google search. For a long time, there has been talk/research regarding a link between various gut bacteria and different forms of inflammatory arthritis, including ankylosing spondylitis and related diseases. However, this report is different. This one talks about Prevotella copri. http://www.sciencedaily.com/re.../11/131105132031.htm Most of the other studies I've looked at talked about Klebsiella as the associated... [ more ]
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J-Pouch ForumsGeneral Discussion
Bisacodyl with j-pouch??
K Kelsie
Scott F Just to be sure: you stopped all bowel slowers and opiate pain meds, right? [ more ]
Kelsie It did but they didnt seem to think it was an issue. They were more concerned with obstruction which wasnt seen. [ more ]
Jan Dollar Yes, it is fine. Not sure it will do much though, since you do not have the same set up as a rectum. It is a stimulant laxative and without the rectal musculature to stimulate, not much may happen. Even a simple tap water enema will likely give you better results. You are probably better off with taking oral stool softeners (colace) or gentle laxatives like Miralax. Did the CT show that your pouch was full of stool? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
VSL
J Judy1
Judy1 Thank you so much, I needed it for a poucher on another site. [ more ]
Jan Dollar Yep, Lion has it covered. The only thing I can add is regarding insurance coverage. Yes, it is true that it will only be covered as a "medical food" if you get the DS (prescription only) form. It may or may not be on your plan's formulary. If it isn't, you may still get covered as long as your doctor orders it with exceptions checked to allow for non-formulary coverage. But, with some plans, there are no exceptions and if it is not on the formulary, then no dice, no matter how many hoops you... [ more ]
LionsPride VSL #3 DS (double strength). Make sure they know specifically that you're looking for the DS. Its national drug code (NDC) is 54482093001. Many times people have been told it isn't covered because their insurance rep or pharmacist is looking at the OTC variety in their system. If you call your pharmacist and ask them to look up the NDC they should be able to tell you quicker than the insurance company. Some insurance covers it, others don't. [ more ]
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J-Pouch ForumsGeneral Discussion
Mesalamine
SpookySpooky
JeffDC Spooky, welcome to the club! Two of my pancreatitis attacks were due to pentasa and mesalamine. Both share some ingredients and have a small chance of causing pancreatitis. I triggered on both. Sorry you're in the club, though. [ more ]
Jan Dollar Just be sure to take it with Vitamin C or acid foods (like orange juice) to enhance absorption. iron salts are nowhere as bioavailable as heme iron (iron associated with blood- like meats). Jan [ more ]
Spooky Yes, I am taking iron. I've actually been taking it for a number of years, but I've increased the dosage since my hemoglobin dropped. [ more ]
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J-Pouch ForumsGeneral Discussion
Trouble breathing
L LilDRay
Jan Dollar Your hiatal hernia may be expanding (up higher in your chest), putting more downward pressure on your diaphragm. Other things to think about is an inflamed gallbladder, but I'd expect more upper GI symptoms. I get a similar symptom when I have rib inflammation, but I have known inflammatory arthritis. This is "out there," but there is also the possibility of pleural effusion, which could cause that symptom. Lots of causes for it, but a simple chest x-ray could rule it out or in. Again, only... [ more ]
LilDRay CT, thank you for your reply... yes, I will be speaking with him about it. And Jan, you guessed it, I do have a hiatal hernia. The discomfort is typically a bit higher up, like, right at the breast bone, but this is lower... like something is putting pressure on my stomach. Reminds me of when our son was little and would sit on my tummy, etc. I wonder if the hernia can move itself downward? I am very uncomfortable wearing a bra or any type of top that is snug in the chest or stomach... all... [ more ]
Jan Dollar Unless you have a respiratory disorder, the only thing I can think of is that you have developed a hiatal hernia over time. This is really common and has nothing to do with pouchitis and/or your j-pouch. I agree that you need to talk to your doctor about this, as it is not normal. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Period Hell
G GraceL
GraceL No Liz I haven't been checked for any of that I keep asking about these things just told about medication to take so maybe I need to be more stricter part of me is worried due to my jpouch but I'm sure they couldn't do any harm if they are properly informed. I'm glad to know that this helped you and I'm sorry on top of everything you also had to I through other things. It's just so good to hear that others had issues. I've been feeling quite on my own and I feel stupid not being able to deal... [ more ]
liz11 grace totally understand your situation and concerns. Ask about the Mirena. They can put that in.. in office. You don't need knocked out or iv's to have it put in or taken out. Mirena works for A LOT of people. They tried it on me.. had it in for five months. But I was an unusual case.. as usual... and it didn't work for me. But it is worth a try as it really is not invasive medication wise like other options. also have you been checked for any other problems..polyps, endometriosis. I had... [ more ]
GraceL I'm so glad I'm not the only one. I always get my bloods checked around my periods and my iron while low isn't low enough for a transfusion so I deal with extra tiredness ontop of the usual tiredness. It's just frustrating that all the medication effects your hormones. I'm glad I'm not the only one trying to avoid medication. Im lucky that my periods haven't one back into the almos twice a month stage it used to be in and comes once a month however with the build up the week before it feels... [ more ]
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J-Pouch ForumsGeneral Discussion
Questions about fistula surgery
B bratcat
n/a Hello bratcat - until you hear from jpouchers on this site who've had experience with fistula surgery, you could also check out http://www.ibdsupport.org/foru.../64-fistula-support/ . I have only had 1 fistula (pouch-vaginal) and have had a draining seton placed. It was done during an EUA, and I was back to work in a couple days. So sorry you're going through this. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Riddle me this: GI or Surgeon, who do I call?
J JessGoguen
Scott F The closest thing to the GI effect of the strong pain meds without the usual side effects is Lomotil. If it helps you feel better you can use it for a very long time with very low risk. [ more ]
JessGoguen Thanks all! I had a c section 10 days ago and notice when I take the pain meds my pouch is much happier so I feel it may just be that my motility is in hyper speed. Prior to my surgeries I was taking belladonna for rapid digestion so I am not sure if this is just popping back up now. I had my takedown in December of last year so I am 11 months out. I am be contacting both my pcp and surgeons offices in the morning to see what they think. Hoping they can get me situated fast. [ more ]
lablover My husband now goes to a gastroenterologist. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch vs continued medical treatment for UC
B bandit
Sgilmore Hello: I had UC and waited as long as possible to have the surgery. I tried everything possible to keep from having it. By the time I had the surgery, I had lost over half of my blood supply and needed a transfusion. Then take 48 pills a day and still the bleeding continued. I was in a very dangerous spot, but the surgery was the best decision I made!!! It SUCKED getting thru it, but I have had only one complication since. It is the way to go. I have been healthy ever since my doctors were... [ more ]
aka KNKLHEAD While I am still trying to work out J-Pouch kinks after 3 years, I remember how tough my life was with UC! My first thought after feeling reasonably well after my cancerous colon was removed was that an ileostomy added significantly to my quality of life. Of course, a healthy/happy J-Pouch is a wonderful advancement. [ more ]
Lesandiego My last flare lasted 3 months and on steroids the whole time (I am allergic to mesalmine that is in all meds). Never got a chance to try remicade. First time I went to the ER because of the constant pain and on the toilet constantly, the ER docs told me I was “constipated” and sent me home. I refused to go back to the ER and stayed in bed for an entire month. After 30 days, I finally threw in the towel and asked my friend to take me back to the hospital. I was finally admitted, but not for... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Starting 2nd try IVF
K ksmarisa
Kteacup Hi ladies, I, too, am about to start my second round of IVF next month. I've had my j-pouch since 2004, and I've been relatively healthy ever since. But at 32, and after a few years of trying, we started our first IVF cycle last year. We did ICSI, and it resulted in two embryos. We transferred one which took, but we miscarried at 8 weeks. A few months later, we transferred the other one (FET), which also took but we lost it around 6 weeks. So here we go again. This time, we're going for a... [ more ]
rockandroller Pregnancy was also pretty pouch-friendly for me, as it slowed things down. We were going to do icsi but didn't, and I can't remember why, but they decided it wasn't necessary. I only had made 3 embryos when we went through it and put them all back in on transfer day. I am lucky enough to have a 4 year old son out of it. I wish you the best of luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain
B BrendaAdams
BrendaAdams I am able to eat ok but get very bloated. The pain is not all day but can last for hours. Bowel movements I do feel like I am straining to pass. I really appreciate all of your advice. [ more ]
ElmerFudd The longer travel time could be related to your Norco pills (if you took them in the morning). Maybe? My surgeon had me go through the SBS because of obstructions the year following my takedown as a matter of procedure. It had to be done prior to justifying surgery. I don't believe the study showed the narrowing that was eventually show to be there when I underwent adhesion lysis (removal). In other words, the SBS showed nothing but I had surgery anyway. Two major adhesions narrowing down my... [ more ]
TE Marie I get this way quite frequently and now eat mostly a soft diet. I still have BM's when this happens, they are small and can be frequent while I'm in pain so bad my Norco pain pills don't provide much relief. My worst area is where my stoma was, which was close to my incision. I had an abscess under my incision that was removed at take down plus I had incisional hernia surgery after that. So I envision a perfect storm for adhesions around there that is causing my partial blockages. My surgeon... [ more ]
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J-Pouch ForumsGeneral Discussion
Im lost, maybe someone can help me sort this out?
K KeepFighting(Manny)
phoenix08 Hi Manny! For me, I know that if I am really tired, that is when I have some trouble with leakage at night. This, for me, is my clue that I have pushed my body too far. For me, more rest helps alot.Sometimes for me, with three kids, it can be very easy to go,go,go even when my body gets tired and says no,no,no. I used to go into dumping in the beginning when I was tired, now it is more night time leakage. Everyone is different. Hang in there because the beginning is so tough. I'm guessing... [ more ]
boy's mom Manny - Keep us posted if you figure this one out. [ more ]
Jan Dollar Everyone's most hated reply: "Sometimes it just takes time." Remember, it can take up to a year for pouch adaptation to occur, and if there was any trauma to the sphincters during surgery (prolonged dilation can cause trauma and it varies from person to person), those nerves can also take a year to repair. So, of course, do what you can in regard to diet, etc., but often it is more about elapsed time than anything else. This is especially true of nocturnal leakage. The sphincters naturally... [ more ]
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J-Pouch ForumsGeneral Discussion
Aspirin allergy
georgiegirlgeorgiegirl
Scott F I'm considering aspirin desensitization, but I'm concerned about the daily aspirin dose that I believe lasts forever after that procedure. I know aspirin has risks, but does anyone know if it presents any additional risks specific to J-pouches or IBD? If you can point to an authoritative source I'd be grateful. [ more ]
Scott F I've been allergic to aspirin for decades, but it never affected my ability to tolerate 5-ASA meds. I guess they're just different. [ more ]
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J-Pouch ForumsGeneral Discussion
30 year anniversary of takedown - anyone else live with a pouch this long
S Solomin
KReid Not sure, just an interpretation of my blood work by my chiro. All other blood counts came back fine, just low triglycerides at 53. But I think some drs would think that's normal. I did work out before the draw which I understand can drop your triglycerides. I'm taking these digestive enzymes for a few months then will get retested. We'll see..... [ more ]
CeeeeCeeee Regarding malabsorption and its relation to having no colon....I thought the colon's function was to absorb water and that all nutrients, etc. were absorbed by the small intestine which, on down the road after our J-pouch surgery, becomes such that it takes over some of the function our colon served....when we had one! Anyone????? [ more ]
KReid Mine will be 25 next March. Knock on wood, no issues for me but a recent blood test showed me having low triglycerides so my dr thinks I might have malabsorption issues. Wouldn't be surprising with no colon! I'm currently on a digestive enzyme to see if it helps. We are a small group so it's great to see others with long term pouches. I hope you are able to get your surgery and feel better soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Eating healthier
DS Daniel S.
skn69 Tumeric is even better in food! I cook with it constantly...it mixes very well with cilantro and garlic as a marinade...just cover a meat/Fish or Fowel with it and marinate with a few drops of olive oil or balsamic vinager and then cook or grill...I get at least 1tsp a day that way...makes for great sauces for rice or pasta too. Sharon [ more ]
KReid I juice 3x a week. Current fav recipe is dandelion greens, carrot, cucumber, kale, apple, lemon, beet, celery. Also, turmeric is good for decreasing inflammation. You can get it in a pill form. [ more ]
Bergie77 Skadett: going to Cleveland Clinic in 2 weeks because docs in Canada cannot find it. Im having same issues as you. Can i contact you by phone to discuss? Please PM me. Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Bruising easily?
M mads101
vanessavy My mom was like that for awhile when I was a kid then she stopped forming big bruises. Maybe hormone related in her case since she is now in her 50s. Do you get more bruises when you have your period? Most vitamins and nutrients are absorbed in the small intestine not the colon. The colon's job is to absorb water [ more ]
Scott F If this is the only time you've developed bigger bruises than you expected then you're probably just fine. Folks with coagulation problems will have more than one episode of bruising, and tend to have unexplained bruising. Yours is explained by pride (just a little joke) and banging your leg on a fence. [ more ]
skn69 Hi Mads, First off, how are you doing and how is your pouch doing for you? How is life in highschool going? Yes, I bruise like no one else I know...I just consider it normal in my life...a bruise is just bleeding under the skin (if you pierced the skin then it would bleed out)and I have always been a 'bleeder'...it is partially the NSAIDs that I take (anti-inflamatory meds for joint/muscle pain) plus a real condition...I have D'heller's-Danlos. When I was a kid ( 15-16) they did all sorts of... [ more ]
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J-Pouch ForumsGeneral Discussion
Chrohns now?
Kline84Kline84
vanessavy I've had 2 abscesses and don't have Chron's. Mine were not in the gi tract though, grew where rectum was removed. My friend had a fistula and then they said Chron's but turned out she had bad c.diff! They scoped her and saw no evidence of Chron's so they are still on the fence if she has CD or UC. Don't let doctors treat you with no scope and just hand out meds. I let some idiot do that to me for a year and I got c.diff from all the antibiotic usage for something I never had... [ more ]
Kline84 Hey all yes I went to see the GI and he woul like me to start Humira. The doc that prescribed the Cipro told me that as long as I take Flagyl with it the c-diff won't reoccur :/ I have been taking it so hopefully I didn't mess up there! No one still has not done a scope or any tests to confirm that it is actually chrohns. They are just going off the basis that I have recurring fistulas and abscesses. The GI did say that it is not certain I have chrohns but since I am having the above stated... [ more ]
liz11 love that Vanessa. I've been firing some of mine too! People need to remember the docs are working for you, no different than an auto mechanic, a hair dresser, or a contractor. If they aren't doing their job.. get rid of them. And find someone that will do the work properly. After all.. this is your health! a bit more important than a bathroom renovation, car fix, or nice hairstyle. [ more ]
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J-Pouch ForumsGeneral Discussion
Gas Issues with J-Pouch
AzimAzim
ljk Hi, Well still having the gas issues. Lately evry time I use the bathroom its a whole lot of gas followed by loose stools. No,I am not eating anything crazy although I really want to but I know its not worth it. Although, I hope that someday I dont have to worry what I put in my mouth! What is going on? I am so frustrated with the whole thing. I am so tired of not feeling good all of the time. I maybe get one day out of the week when wow, I feel normal! I know this is TMI but lately when I... [ more ]
rachelraven I never could take fiber or antidiarrheals, because they make things too thick for me, and harder to push out. When I had my outlet narrowing, I was trapping gas like crazy, and felt somewhat as you're describing. It was the worst. Only way I could get it out was to lie on my back with my knees up to my ears. Awful. I'd have horrific pressure, constant needs to *try* to get stuff out, and not much would work. Maybe TMI, but sitting in a hot sitz bath sometimes would relax me enough to push... [ more ]
ljk I also feel like I have to go to the bathroom and nothing as much as need it too nothing comes out I am really nervous and afraid too LJK [ more ]
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J-Pouch ForumsGeneral Discussion
Pysllium
J JessGoguen
AP I had chronic pouchitis until I started taking it. I take it in loose form with a full glass of water about three times per day. I don't know if it is the fact that it helps to empty me or some other reason why I stopped getting pouchitis after I started taking it, but whatever the reason I'm so glad I started. [ more ]
Scott C... Jess, go to Vitamin Shop and get Psyllium Powder. I take two table spoons and one table spoon Citricul twice daily. Citricul contains methylcellulose which is also bulking. I don't recommend this much at first but that what it takes to make my stools firms. I have chronic diarrhea and this is the only thing that helps. [ more ]
TinCan I'm with Scott in that I liked the biscuits but did not care for the sugar, so switched to the powder form - or thought I did. Turns out it was wheat dextrin in a very similar looking container. Thought I would give it a try. Fortunately it appears to work just fine. I have also been using a product called metacleanse. It is psyllium with flax and bentonite clay. It works quite well too for bulking. I'm not positive, but I think it may also be helping with my pouchitis as I have not needed... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BURNING AND RECTAL PAIN
C Chrissey86
ljk thank you! [ more ]
mainebound Maybe you have a touch of pouchitis ? I know when I get super gassy and have frequent stools with burn, I call my surgeon for some Flagyl. He usually prescribes for 10 days and I get everything straightened out. Then, I try to take a probiotic, such as Culturelle, for a couple of weeks after . For the burn, try frequent sitz baths. I also used Maloxx on tp while wiping, followed by liberal amounts of Calmoseptine. Don't be afraid to put the Calmoseptine a little inside anal opening. Hope you... [ more ]
ljk A PM would be great if you can thank you again LJK [ more ]
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J-Pouch ForumsGeneral Discussion
ohh my rectum
Akk3769Akk3769
ljk Thanks so much for the replies, the reason for asking is when I had my first surgery 8 years ago the surgeon said that the crohns/colitis qas in my lg intestine plus my rectum. I am still adjusting to the jpouch and my mind races that my crohns is back, so scary! I am still having BAD butt burn, incontinence,and I have this feeling that someone has kicked me in the stomach, also because my buttum is so raw I sometimes have blood in my stool which really worries me but again its not all the... [ more ]
lovedby2 Yes, like mentioned above, the words rectum for example, just fly out of our mouths...even though it is removed. [ more ]
Jan Dollar Yes the rectum is removed, for the most part. In most cases there is a 1-2 cm rim of rectal tissue remaining to attach the pouch to, and generally it causes less problems than trying to completely remove all rectal tissue. But, I should mention that a few people do NOT have their rectums removed, but if you retain your rectum, you do not need a j-pouch. Sometimes too much rectum is left behind and that is a big problem for many. Also, the ileal pouch is referred to as a "neo-rectum," that is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
gas
L ljk
vanessavy I get bad gas from SIBO and it gets worse buy the main culprit, sugar. If you are eating carbs like bread then that is pretty much the same offender. Check your diet. [ more ]
Scott F Some folks seem to get good results from Beano or Gas-X or digestive enzymes. Gas can sometimes be a sign of bacterial overgrowth, which might warrant antibiotics. [ more ]
Solomin Hi, I find carbohydrates to cause a lot of gas, especially Bread (wheat products). Try avoiding gluten and see how you react in terms of results. Good luck! Solomin [ more ]
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J-Pouch ForumsPouchitis
Just Flagyl side effects or bad pouchitis
Michael HubbardMichael Hubbard
vanessavy Do you still have one? I get fevers with them. Well not full on fevers but "feverish feeling". Sometimes C.diff can give you feverish feeling as well and it mimics pouchitis. [ more ]
Jan Dollar One thing I failed to mention is that if your pouchitis symptoms do not improve or worsen within a few days of starting an antibiotic, you need either a higher dose, a different antibiotic, or combination antibiotic therapy. Fever is not a typical symptom of pouchitis, but it occasionally happens. That said, if fever occurred well after starting an antibiotic, I would assume it was drug fever, unless your other pouchitis symptoms also worsened. Jan [ more ]
Jan Dollar Since you already experienced sensitivity to Flagyl, it is not a stretch to assume your low grade fever was a drug fever. It is a fairly common phenomenon. Is the dose higher than you've taken in the past? That could be a factor, as side effects are often dose related. I would think a smaller dose three tines a day would produce less side effects than a higher dose twice a day, if the total daily dose is equivalent. I never take more than 250mg three times a day and get excellent results... [ more ]
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J-Pouch ForumsGeneral Discussion
Possible New Romantic Relationship - HELP!!
Susan HamiltonSusan Hamilton
skn69 Susan, There is nothing to be embarassed about...Trust me...I have 'sprung a leak' from my k pouch in public, private, in bed (at the wrong time) and once on my 18month old grandson's head! (he came running into the house and threw himself at me! Hubby had to clean up the mess while I got washed)...I have learned the hard way that there is no reason to be embarassed and if they like you, they don't run...hubby is a 'prissy' of sorts...architect, good looking guy with culture and class...I... [ more ]
Susan Hamilton Sharon, thank you!! I'm not even sure if I'm ready to take the dating step but when I am, I know it will be difficult when it comes time to fess up! It's the fistula and subsequent drainage from it that worry me the most and will cause me the most embarrassment. I know it could be quite sometime until it gets to that point, if ever, but I worry about telling any man st the right time. I don't ever want to get that deep into a relationship and then spill my guts and he run. I've lost a... [ more ]
skn69 Susan, It is never easy to move on whether you are perfectly healthy or ill...and our illness is one that is hard to throw onto the coffee table with the peanuts and coctails...most people don't like taking about potty issues especially while dating but just like the rest, it is part of life. My hubby (#2) was very discrete about bodily functions and such, I was shy and terrified about discussing it so I hid behind fancy lingerie to hide the scars, dark lighting, candles and... [ more ]
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J-Pouch ForumsGeneral Discussion
Self Dilation
P phonix2g
cr ❤️
phonix2g Thanks guys. Jeane I bowed out gracefully after a couple days of deep thought and said if I really need to go through with that again you can take advantage of me after you drug me up. Scott that's a funny story but disturbing mental picture still trying to erase that. I asked my wife also if she would do it for me just to see what she would say and she said "no effen way" ha ha I don't blame her. [ more ]
jeane Phonix, I say go for the procedure under anesthesia. You will feel nothing during it. I am never really sore the day after either and the benefit is worth it to be able to fully empty your pouch even if it only last 3-6 months before having to repeat the procedure. It sure seems to beat your current alternative. My GI has agreed to dilate every six months. He said if it becomes more frequent than that then I should really consider pouch advancement surgery which is the last thing on my list... [ more ]
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J-Pouch ForumsGeneral Discussion
endoscopy camera pill
OZOZ
Pouch4Wf Yes, my wife had pill endoscopy. She retained the pill for 4 days and finally passed it. No concerns from experienced GI that pill was retained. Initial report showed possible crohn's but follow-up scope dismissed diagnosis. Remember, pill endoscopy is great technology, but is really not the best test to diagnosis inflammation. It is really used and is very effective at finding bleeding of unknown origin. DP [ more ]
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J-Pouch ForumsGeneral Discussion
drinks with friends?
L loop
CeeeeCeeee My J-pouch is alcohol-friendly. I'm not a big drinker and never was. On very hot days I love beer. No problem. Typically, my preference is for one or two drinks but preferably gin martinis.....usually two. No problem. I don't remember how drinking was with me when I had a temporary ileostomy. My version of temporary was a full year. So, it must have been okay because I don't remember giving up drinking.....or eating. I just tried new things in steps and if a food/drink didn't "work" one week... [ more ]
CTBarrister I went to a CCFA Fundraiser last week which was a "wine tasting" in Bethel, CT, with a friend of mine who has had UC for 30+ years. It was actually the best wine tasting I have ever been to because in addition to a wide assortment of red and white wines, they also had spirits and cordials being offered by the participating vendors. I tried the following: Single malt Scotch Whiskey Bourbon Lemon-infused Gin Dominican Rum Amurula (South African Cream Liquer, similar to Bailey's) Moscato (I... [ more ]
Scott F Not only do individual tolerances vary, but people also vary enormously in what they would call "a bunch of drinks." Pay attention to your body and treat it like it's worth something and things are likely to be fine. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Partial Blockage
P phonix2g
mainebound I am almost 10 years with a j-pouch and I get sporadic partial blockages. Sometimes I can't determine the cause, other times, I know what caused it. My worst one has been from snacking on stuffed potato skins. But, I will eat potato skins a different day and nothing happens. When I feel crampy, I switch to liquids, water and grape juice, and try to walk a lot and do stretches. I just know that after it passes , I feel bruised and sore in my abdomen on the right side (Where all of my... [ more ]
Allison I have had 2 partial blockages in the last two months - never had one before that in 13 years. Does that happen? Can they just start showing up? I think I know what started the first, too much psyllium followed by dry oatmeal without enough water. The second one, however, I have no idea. I'm just getting over this one. I have been putting a heating pad on the stoma area, drinking hot water, not eating very much and eating figs which usually shoot right through me. I've also been exercising... [ more ]
TE Marie It sounds like a partial blockage. I've been getting them as well. As long as you are still passing stool that's good and there isn't much anyone can do for us. Drink some white grape or apple juice to help move things along as well as drinking warm tea. Warm baths help too. I've been eating mainly soft foods since my last one and gradually adding back in my safe foods, like baked chicken and mashed potatoes. I have daily protein fruit smoothies and a lot of Greek yogurt. My surgeon ordered... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
10 weeks... and freaking out!
S SKadett
JillM EVen women without our issues get worried in pregnancy. First, its a totally uncertain process. Second, you are caring for a new life. Third, your hormones are nuts, so everything is amplified. Take a deep breath and remember that the dr was likely giving you worst case scenarios. I have a perm ileo and had a near total obstruction during my first pregnancy due to the adhesions the dr mentioned to you. It was touch and go if I might need surgery, but in the end I didn't. But here's the... [ more ]
clz81 I tried to post a reply yesterday, but doesn't look like it took. Basically, don't panic!! There are a whole bunch of us on here that have had totally normal pregnancies! You've gotten pregnant, and that is typically the more difficult part after surgery. Your pregnancy will likely be very similar to anyone else, except that you'll have an increase in frequency especially the last trimester. You may feel some pulling around the scar tissue as your belly expands, but I don't know that it... [ more ]
Bergie77 Skadett where do you live in Canada? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diverticulitis on Cat Scan...is that possible?
Khaos247Khaos247
Khaos247 Thanks, it has been a rocky few months and lately it's just a bit more frequent. As soon as I can, I will have them look into possible fistula and check the general j-pouch health since it has been a while. [ more ]
Jan Dollar You can get diverticula anywhere in the GI tract (even the esophagus). I would not be surprised if your straining caused it. However, I would be concerned that tjis actually was a fistula or sinus tract, so I think you need to follow up with your GI and have him review the films. A fistula certainly would explain your recurring problems. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Butt Burn - Barrier Wipes?
WBrooksWBrooks
DON alias (Butt Blaster) I have said this many times get a bidet it will change your life fighting butt burn. [ more ]
Scott C... Brooks, I hate to say this but I know what you mean. I am almost a 6 year frequent flyer with the J-Pouch mess. Call it what you want but BUTT burn is horrible and I live with it. I am a teacher also and it sucks. Here is what I found that helps me: ILEX. Nothing else works or is better in my opinion and I have tried everything. I have even went to compounding pharmacies and made my own recipes. I have experimented with nearly everything but it all comes back to ILEX. Next, no many have... [ more ]
PDXDavid It's great you are using Calmoseptine. It's worth its weight in gold! Now as for your wiping. Stop that. On behalf of your backside, let me say, "Ouch!" At medical pharmacies they sell squeeze spray bottles for peri-anal washing. I take one with me whenever I leave the house. Just fill it with warm water and spray it on your bum after a BM, then pat dry. Don't wipe. It works surprisingly well, though you might need to repeat the procedure. (I sometimes carry 2 bottles. Better too many than... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Probiotics
B bratcat
ljk A PM would be great if you can Thanks again LJK [ more ]
ljk Hi My MD gave me probiotics too Align samples, I took the first capsule and found myself inthe bathroom all day. Do they have a laxitive in them? He also never explained why I was to take them. Ya, I did not like that at all. I think I need to find a new MD to see. Well then I tried them again but this time I opened the capsule and only used half and I put it in my drink and that was Ok! What are the benefits? Does every jpoucher use them? thanks so much LJK [ more ]
phonix2g I agree with Scott when I got the powder VSL samples from my Dr. I mixed it with yogurt and was shocked by how the flavor of the yogurt was not affected at all. Seemed like a perfect marriage. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Searching for all good advices :)
D Danishgirl
Mrs. H. My GI suggests that all women try IVF right away because of such a high chance of having blocked tubes. My husband and I got pregnant after almost a year of trying when I was on the whole 30 (paleo eating diet). I'm not sure if it was a fluke, but I have a feeling that it played a role in us getting pregnant but if both tubes are blocked, diet won't make a difference. I suggest going to a fertility clinic sooner rather than later. [ more ]
rockandroller I agree with Jill. Also, doing it every other day is NOT the way to get pregnant. I don't know what your access to books is, but I suggest the book Taking Charge of Your Fertility if you are interested in trying naturally a bit longer, and signing up on FertilityFriend.com, which is a free charting site that will help you understand your own cycle and the signs of when it's time to do it (and it's not every other day, which could actually hurt your chances instead of just doing it on the... [ more ]
JillM AFter 4 years of unprotected sex and no pregnancies, I would be checking into a fertility specialist. Your biggest advantage is your age, so I wouldn't wait any longer. All fertility treatments are most effective the younger you are. An HSG test should tell if you have blocked tubes, and basic lab work will tell if you or your partner have any issues with hormones or sperm. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need advice immediately
M Matt34
phoenix08 I spent several years working an abd. surgery floor as a RN. It may be how you are carrying your weight.If you carry the extra weight in your abd,that may be why it is such a problem. Stitching fat does not work so well. I am sorry that sounds so bad but it is just the way the body works sometimes. This is not always the case, unfortunately, you would not know until after surgery if you would be the unfortunate one.I remember times when wounds were open and packed because the layer of abd... [ more ]
TE Marie FYI - I was saying she "was not arrogant" because she wasn't going forward with the procedure.....that an arrogant doctor would do the surgery. I hope that is clear now. She is doing the correct thing in not proceeding as she has reservations. 250 pounds on a 6'2" tall man is not the same as 250 pounds on a 5'8" man. Sure if you look this up on a chart he's not in the normal range but there are some of us with UC that did not become underweight. Some of us gained weight that we could not... [ more ]
Pluot I think it's quite the opposite, an arrogant doctor would go ahead and do a surgery she's not actually experienced or confident with... 250 lb at 6'2" is technically obese and as mentioned upthread, without getting judgey about it the hard truth is that obesity is a huge risk factor for abdominal surgery. It sounds like you have only had a colectomy so far, so you would most likely need two more surgeries (one to build the j-pouch and one to reverse the ileostomy). First of all, it is... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
No "action" from ileostomy
LB Lisa B
New J-Pouch I am almost 2 weeks post (surgery at Cleveland Clinic). I am still 'measuring' and was told if I do not have at least 800 cc's per 24 hrs. to contact my Ostomy nurse. I eat 5-6 small meals a day, drink inbetween and chew like crazy. Good Luck! [ more ]
Lisa B I don't think he is exaggerating. I'm very concerned and really want him to see another dr, since his just tells him to stay hydrated. I think he's vomiting as well. Scary... [ more ]
Pluot This is scary. I'm surprised he isn't vomiting after days of no output though?? Could he possibly be exaggerating? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Extreme fatigue?
H hails1
mainebound Have they checked your B12 levels. If you are low, it can really zap your energy! [ more ]
TE Marie There are a lot of things that could be going on such as fibromyalgia which includes chronic fatigue and the ideas above. Please start out with a Rheumatologist to be checked out for autoimmune problems. There is a reason why you are feeling the way you are. You might want to do a search for fibromyalgia, chronic fatigue, sleep apnea, restless legs syndrome, or by your symptoms and see what you turn up on-line. [ more ]
bandit Have you been tested for sleep apnea and the other associated syndromes (restless leg syndrome and periodic limb movement disorfer)that can keep someone from getting a good night's sleep? Iron deficiencies can contribute significantly to these disorders. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Authentic Information on CUFFITIS
C cksind
jeane I am interested to see if anyone posting here has gone for pouch advancement surgery as of yet? [ more ]
Rowans mom Please keep me updated on your progress, my DD currently has a failed pouch and a diverted ileostomy. We are in the process of getting two different opinions. The first is I suggesting we remove the rectal cuff because he believes it has a motility issue and is too long at 5cm. My DD pouch became extremely dilated and bogged down. Our next opinion should be sometime in December 2012 in Cincinnati Colorectal Center at the Children's Hospital. Please tell me how you are doing. I hope your... [ more ]
cksind Dear Jeane I am really feeling very sorry for your condition. It is painful and indeed difficult to manage. Many things are required for successful management of a condition. First and foremost is the access to a Doctor who is outstanding in his knowledge and skills and has time to give personal attention. If the problem is in the rectal cuff, left after IPAA, then the rational solution is to have that portion removed. Many times you get what you expect. One should never lie on the operation... [ more ]
See all 21 replies...
J-Pouch ForumsPouchitis
C.Diff
vanessavyvanessavy
vanessavy UGH! I was in the ER two times this week. Last one I thought I was having a heart attack and I couldn't breathe. Scary few days. Anyway.. I picked up c.diff along the way. I have blood, severely bad cramping (I call it rectal cramping in my abdomen since I have a stoma) and intense gas. Since I have my rectum and anus removed I get this fluttering of massive gas that tries to push out of a closed up area. That is my #1 sign. And I am suffering bad. The blood and the cramping. Sucks.. I have... [ more ]
TE Marie When I have c.diff my frequency goes up and the consistency becomes more watery to water. I eat lite during the day and it so it gets worse as the day goes on, in the late afternoon, evening and into the early a.m. I didn't extend like a balloon, that I noticed, but I wasn't dressed in work attire either. Are you having pain too Rocket? The stool test is the best way to go, and not to hard for j-pouchers to produce. If you aren't taking antibiotics you should be able to do the test at the... [ more ]
Rocket Thank you Vanessavy. I have an appt with a GI/Nutrionist on November 5th. I have asked to be tested for Lactose Intolerance though I hardly ever touch milk products and c.Diff. I just want to get to the bottom of this why after I eat lunch, I have so much Gas that my gut is exentended like a ballon. So I have to pass it. An hour or so later, the same thing. An hour later than that, the same thing. Its like a bomb explodes in the bathroom. Normally, I pass some stool with it after the 2nd... [ more ]
See all 43 replies...
J-Pouch ForumsGeneral Discussion
Meds after j pouch surgery
B bandit
bandit Again, I say thank you to everyone for your insight and information. I realize I cannot predict the future and should deal with what is on the table now. I am just so depressed and afraid right now. I will see the GI doc again in January, after which he plans to do a scope. My impression is that he wants to give the remicade some more time. Next infusion (#6 or 7) is next week and hopefully will see some progress. If no improvement, I will push to have an appointment sooner. In early... [ more ]
Scott F The folks here have a variety of histories. You are likely to differ in important ways from many. Someone whose colectomy was for FAP will generally have an extremely different experience from someone with Crohn's, which in turn will be different from UC. OTOH we will tend to share some experiences (e.g. butt burn). [ more ]
suebear It's great that you are looking around at this site and observing others recoveries. Yes, some people do continue to have manifestations of UC post surgery; either in the cuff, or arthritis, etc. Some get chronic pouchitis, and thousands of others are like me; I take no medication for my pouch or anything else. I'm 12 years from surgery and I live a very active life and no in my close circle of friends would consider me different than them. Like you I had read this board and became... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Dr. Shen - still cautious
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD tdr26: Yes, I had problems after the first procedure. He put two endoclips in to keep the sinus open, but they fell out; therefore, I was back to square one. However, last time he put in 9 clips to ensure the sinus is able to drain. As far as "knowing when the clips fall out," I think they are actually very, very small and I'm not sure what they are made of. But never noticed anything unusual! Dr. Shen said he is "90% sure" and "guarantees" he can keep me pouch happy! He certainly helps you... [ more ]
jeane I too feel miserable when on cipro (and always wiped out), but I feel more miserable off it. My joint pain increases while on cipro and the only thing that does feel good while on it is my normally terribly sore rectal cuff (without cipro, my last 2 centimeters of cuff burn constantly and feels rip raw all the time from chronic cuffitis). I am sorry your procedure did not go as expected. Don't give up. I know Dr. Shen always has some tricks up his sleeve and hopefully this procedure will... [ more ]
Spooky Sorry to hear that the first procedure didn't take, but I really hope this second one is the fix you need! You are in good hands with Dr. Shen. Thanks for keeping us up to date. Nope, you're not unusual, and you're certainly not alone. I ALWAYS feel lousy on cipro. I do a little better on flagyl. I think some of us are just more sensitive to antibiotics than others. Hopefully you won't need them for too long! [ more ]
See all 4 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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