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J-Pouch ForumsFAP Forum
Passing on the gene
FAPqueenFAPqueen
skn69 Rachel, As a child and early teen, I had a lot of surgeries and tests. Hours on end of x-rays and what amounted to radiation treatment between age 10-12...by then I was freaked out seeing all of the nurses and techs running behind walls and putting on lead aprons and shields while I was flat on the table practically naked and being bombarded. I asked to see an ob-gyn, something that shocked them all. I was frightened for my fertility. (yup, at 12...I was that kind of kid). She was kind and... [ more ]
Raychee I know this it is a long time since you posted, but I am not internet savvy, and only have iPhone and joined this site six months ago. Regarding pregnacy after surgery:- My Mother had her First surgery In 1959 at age 21, and in those days the only option was permanent ileostomy. Which at that time was about a 3-4inch opening kept open will a brass ring, and she had 2 reusable bags which she used for thirty years. She had no aftercare no checkups nor to many problems until 30 years later when... [ more ]
skn69 Thanks Laura, I support everything that you said. We cannot (although we would like to) control what type of genetic code we pass down to our kids and even when we think that we have we may get something completely different than expected. We should not feel guilty about wanting kids and having them naturally. Anyone that tries to shame you for having made that choice should be publicly flogged with a rubber chicken! I do not think that my parents expected a kid with so many problems but... [ more ]
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J-Pouch ForumsK-Pouch Korner
everyone list best trick to enter full/tight pouch
D dpol
sldrx Where to buy catheters: first, check with your insurance company because if your supplies are covered, they may have a preferred distributor, like Byram Healthcare. Medicare does cover continent ostomy supplies and so does UHC — I'm sure many others do as well. Second, your surgeon would tell you what size catheter you need. Typical sizes are 28FR and 30FR. Marlen and Medina are popular brands of catheter, 15 inches in length or longer. Direct suppliers for catheters and other stuff: just... [ more ]
temoty Could someone give me a link so I know where to buy one of these catheters? [ more ]
Shavon I was boiling the catheter so it would soften and slide in easier and cause less pain. I wait for it to cool down to room temp before using it. However that stopped working for me so now I’m back to freezing. I’m also finding luck with a smaller catheter- although it takes forever with the smaller holes. A large part of my issue is waiting too long to intubate like LadyTay said. I just started back working and I’m not comfortable intubating away from home yet. Even when I don’t wait it’s... [ more ]
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J-Pouch ForumsGeneral Discussion
SSRI Anti-Depressants and Frequency of BMs-Leakage?
temotytemoty
girlunky If you are like me you wait to have a problem until a holiday weekend...anyway if you run a fever or start vomiting or have uncontrolled diarrhea you know that you have to get medical attention before you become dehydrated. But otherwise: Coffee makes a mess out of my digestion. Good idea to avoid it. How about a day of clear liquids to give yourself a rest? You changed your meds around - who knows how long it takes to stabilize? [ more ]
temoty I'm also getting some sharp flashes of pain near my old stoma site that seems to occur when I move my body certain ways. I had bowel resection done 1 year ago with no complications since then....Could an ulcer make these pains? Today, I stopped drinking coffee(I normally drink a lot of coffee). thanks [ more ]
temoty Hey everyone, I feel better going back up to normal SSRI, but I get a little dull cramp in right side every time I eat something and I'm still having loose BMs. Anyone want to guess what's going on? Could it just be IBS? The dull pain feels like it's below right rib near the former ostomy scar from my j-pouch surgery. I was a little paranoid it might be a partial obstruction, but in the past I had to go to ER for obstructions. I don't know what's going on and it's frustrating. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch and crohns - best/worse food?
C Cath75
Cath75 Hi! I had to stop humira after just 4 months. Not due to side effects (I didn’t notice any) but because I immediately started to produce antibodies. So humira didn’t have any effect on me. Have used cipeoxin, entocort and cortisone and at last the inflammation has calmed down. The doctors would now like to see how long it takes before I get worse again. And then they will consider starting up with remicade (or similar medication). Wishing you you all the best. I believe Humira really helps... [ more ]
DeleneSC Cath, I just posted a similar post, and am wondering how you did with Humira. I REALLY don't want to start on it, because I am starting to try some of these diets. What side effects have you had on Humira, and tell me anything you can about it. THANKS! [ more ]
Cath75 Thank you for your responses CTBarrister and Scott! Trail and error seems to be the way to go... So far I cannot find any sure connection between what I eat and how I feel. I often feel that I do everything right, but still get worse. It is frustrating and I tend to blame myself for not eating right and therefore getting worse. Have looked at the SCI and low foodmap diets but a bit unsure about starting a strict food regime. Also, when I remove the food that is not so good for the pouch, the... [ more ]
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J-Pouch ForumsOstomy & Skin
heat
M Momma
n/a Heat hasn't upset my barrier too much, but when I get itchy under the tape part of it, I squirt a tiny bit of nasacort on my fingers, wipe it around the itchy area, and continue with my normal barrier application. I usually do this maybe twice a month. I picked up this tip on another ostomy site, and it works great for me. I checked 1st with my dermatologist who said it wasn't a fungal or yeast thing. Maybe your son could run this idea by his ostomy nurse or dermatologist? [ more ]
PouchLogic I found after having a jpouch I don't tolerate the heat as well as I used to in general. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch - SSD
D dmmck
dmmck Thank you so much! My case is in the hands of a lawyer now. I worked until I got laid off. The company knew that I had 2 more surgeries to go. So they cut me a 2 wks severence pay BUT I had to sign a statement that I would not sue them. So, no short or long term disability. I was denied my first application which I was not finished with as incomplete. I was denied my second application as well. Then, I got a lawyer. I was approved and finally 8 months later I got my first check. Now we're... [ more ]
TE Marie I was approved with my initial application but they had me see one of their psychologist's and a MD. I had documented my last day at work. My LTD insurance used that date as well. Getting my private insurance didn't help with the SSDI application but it helped me continue to get paid when they tried to cut off those benefits. I kept thinking I was going to get better so didn't file until over 2 years from that date. They paid me back pay as follows. The first 6 months after my last day they... [ more ]
dmmck Thanks for the reply. It makes me feel not so alone. I also did get approved for SSD, but they denied back pay. So, I have a lawyer now, that is appealing not getting paid when I was severly ill. I'm 61 and have a good amount of other medical and mental health (anxiety/depression) problems. Were you asked anything in court. How did you answer "What symptoms kept you from working?" [ more ]
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J-Pouch ForumsGeneral Discussion
Nutrition Help Please
J moonsJ moons
Raj I am not anaemic but still take one iron tablet a day. As my surgeon says pouchers can have low iron levels and its something that will help balance it. There's no harm in precaution. For weight, I was down to 42 kg post op and now weighing around 57-58 in 9 months, mostly muscle mass. I've tried different diets to bulk up fast. A homemade weight gain shake helps, made from 2 bananas, 1mango, 1cup milk, 2 tsp peanut butter, 1 cup oats and 1 scoop whey. You can add or deduct anything that may... [ more ]
Scott F Hi, Kate! I use VSL in high doses, to help with pouchitis. I suspect its effectiveness may be mostly because of the very high number of bacteria in a typical dose. Visbiome may be easier to find, and might even work better than VSL. They are expensive, though. I’ve used psyllium (Metamucil/Konsyl) every day since my surgery 17 years ago. When I’ve stopped it a couple of times it immediately became obvious that my gut works better with it. Some people use it with less water than directed on... [ more ]
Katydid Apologies for the long post - its my first... Almost embarrassed to say that I had my reconnect surgery was in early 2013 and although my quality of life was greatly improved by having my colon/rectum removed, I still have not adopted a regimen of sorts that makes me feel my healthiest. (I do not take any supplements - after surgery, I loved not having to take any pills!) I am intrigued that someone spoke about a Pouch clinic or specialists dealing with pouches.. I asked my surgeon after the... [ more ]
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J-Pouch ForumsGeneral Discussion
VSL3 vs Visbiome
D DSTJ
Janiep Thank you Scott!!! You’re always so very helpful!!! I appreciate it. Chronic Pouchitis is why I need the Probiotics. Janie [ more ]
Scott F Janie, I also take a lot: 4 packets per day of VSL #3 DS. Thank goodness my insurance covers it! If you are paying the full retail price then you can comparison shop and try to save some money that way (the prices can differ a lot between pharmacies!). I suspect you will get similar results from VSL #3 and Visbiome, but that’s just a suspicion. VSL does have some savings programs (which I use): https://www.vsl3.com/hcp/acces...d-savings/index.html If your purpose is to prevent C. Diff then... [ more ]
Janiep ❤️
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J-Pouch ForumsGeneral Discussion
Paranoia & Avoiding Different Foods
P Pouchbro
Andreita I can't imagine how traumatizing this must have been for you. I'm currently with the loop and I'll be reconnected in 10 days. The only advice I have so far is try small servings at a time. I also started a food journal again and I write down what went well and what didn't. So far I have problems with mushrooms, raw veggies and too much oatmeal. In small portions it's ok. Good luck [ more ]
tf Hi, I totally relate to you. I have never been able eat what I want. I have to refuse many dinner invites because eating out is a problem because I don't know who or what is used to make the food. I feel bad that my family and friends have to compromise with me and also in the time frame after food; my bathroom time. It's a challenge. I did mention before the FODMAP diet look it up. It is very helpful. Also, keep track of what u eat and write down the symptoms to know what is good or bad. [ more ]
Raj I too get blocked sometimes and man it hurts , hurts like hell no matter how much pressure you put on the seat nothing seems to move out . I asked my surgeon why is it so that I get blocked only after dinner and after working out. His response was you are not drinking enough water to keep your gut going. I stopped eating bananas before workout as they are hard to pass through and I feel like if during workout I loose more water they get stuck inside causing blockage. Also my surgeon advised... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Aching
Maria410Maria410
Maria410 Thanks Scott F. I didn’t think so. I was wondering if it could be muscular/ nerve pain as I’m always slightly clenching because of the butt burn! I’m now booked to have my gall bladder removed in 3 days time, so I’m hoping that helps with the acid and as a result eases the burn... but as with everything to do with this disease, it feels like a constant trial and error process. [ more ]
Scott F This doesn’t sound like pouchitis to me. It might be an abscess in a particularly inconvenient location. A less likely possibility, I think, is a back issue. When I had a badly herniated disc it got very, very painful to poop. I think you probably need a doctor’s appointment soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recurring Abscess problems for 3 years now - I want it to END
J JenniferC
Scott F A sinus is like a fistula with a dead-end (one opening). Fistulas can close up and act like sinuses. [ more ]
JenniferC I'm not sure what you meant by "sinus". I wasn't sure what fistula had to do with an abscess so I googled it. If I recall correctly, I was told that I didn't have a fistula problem by my first doctor. But I will ask my current doctor about it - maybe it formed later? Thanks for the suggestions. [ more ]
Scott F Has anyone suggested that this could be from a fistula (or a sinus)? That would be my guess. They can be hard to treat, but it’s a lot harder if they aren’t diagnosed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm 19, 3 months post surgery for j-pouch
HI Hope Its OK
JenJen Just writing to say I echo all the good advice above about dietary changes and looking into the possibility of pouchitis. (I take Cipro constantly for it.). Also want to add that codeine sulfate helped me slow things down much more than Lomotil or Imodium. Lastly, regarding your weight, a diet high in protein and quality carbs/fats helps, but time will too. Your gut is still adapting to its new setup. It took me about 9 months of trying then, out of nowhere, I just started gaining weight. At... [ more ]
Mysticobra I wish you the best. Good luck. Your too young to have to have this over your head. I feel for you. Richard. [ more ]
Hope Its OK Thank you everyone, sorry I couldn't write before it was a busy week at school. I tried oatmeal and it really is working, also bananas, rice and patatoes was already in my diet. I eat them almost all the time. Also i will get metamucil as soon as possible. Leakage is really the worst, i am wearing adult diapers when i feel it is going to happen, but still it is bad, also smells really bad. I will go see my doctor next week, his only available day is next friday... So thank you all, i hope... [ more ]
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J-Pouch ForumsGeneral Discussion
Step 2 surgery
A Andreita
Andreita Thank you. He left my cuff [ more ]
Scott F The usual surgery attaches the J-pouch to the rectal cuff using a circular stapler. The less common approach removes the rectal cuff and the pouch is hand-sewn to the anal canal. [ more ]
Andreita I have another question. You know when we had a colon sometimes we pressed too hard and might have caused an anal fissure or something like that. I'm afraid now with the jpouch that I can pop a stitch. Can that happen? And how exactly does the surgeon attach the jpouch to the anus? I want to understand the physiology behind it. Whatever I Google it just says the surgeon attaches and I get pictures but I'm still not 100% sure on how he attaches it. [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch not emptying
D Dally
Arnaud I've solved emptying problems with a Medina catheter. A friend of mine actually wrote a web site about it, here : https://fix-pouchitis.weebly.com/ Also a small research article about it here : https://www.gastrojournal.org/...(09)64286-4/abstract Good luck ! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal Fissure with JPouch
A arodecker
arodecker Thank you so much!! I'm going to look into that. [ more ]
Former Member I've found ilex paste applied internally really works; for myself, when a fissure occurs, I'm able to determine its exact location within the anal sphincter and apply the ilex Just there; by the time of my next BM, the fissure has healed; or maybe the ilex is protecting it so well, there's no stinging, burning or excruciating pain. [ more ]
Scott F Anal fissures can be difficult to treat, and require some patience, but it sounds like you’re doing the right things. Soluble fiber tends to work a little differently for folks without colons, in that it helps bulk up the stool for most of us (rather than soften it), but it still should be fine with a fissure. If your ointment is nifedipine or nitroglycerin then it should help heal the fissure. In especially difficult cases Botox injections are sometimes used, but you ought to give the... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Not Sure Whether To Pouch or Wait due to Infertility Concerns
C COFFEEFORTHEWIN
duck11 I had a three-step surgery and tried to get pregnant about 10 years later (early 30's). Didn't work, so we tried fertility treatments and they didn't work either. I ended up being diagnosed with Endometriosis so it was a double-whammy for conception, hard to say whether it was the surgeries or the disease that prevented it. We have a beautiful little baby through an adoption though, so it is all good I guess it depends how happy you are living with an osotmy. I hated mine, you couldn't pay... [ more ]
brmcguire I had my pouch created at the same time as my colectomy, in the first of two surgeries. My first surgery was done laproscopically, and three months later I had my take down. This was in 2011. Since then, I have had two healthy pregnancies, with no fertility issues. The only caution my surgeon gave me was he said I had to have a c-section to deliver my kids, rather than deliver naturally, which I had no issues with and my OB was very understanding of. The recovery from the c-sections was... [ more ]
lholdem I had the j-pouch created the same time as my colectomy. I had a temporary ostomy for three months. For me, I actually was having issues with fertility before my surgeries, probably due to my disease activity and medications. I actually *accidentally* got pregnant right before my ostomy takedown... oops I now have two beautiful children. So for me, it wasn’t an issue - I think getting healthier was better for my fertility in general. However, one thing to consider is it seems I don’t scar... [ more ]
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J-Pouch ForumsGeneral Discussion
Unwanted Weight Loss
K Kait2000
Aimc Try it with ice cream. Make them into a milkshake. They are pretty good that way. [ more ]
CTB23 Boy can I understand not wanting to drink anything like Ensure. For me, it was Boost. Still dislike it unless I put a banana and run it through my Vita Mix. And then only on a rare occasion. [ more ]
N Fos I've had problems gaining and maintaining weight since I had UC and my colon was removed in my early 20's. I'm now 48 yrs old and still cannot budge over 125lbs. My so-called "ideal weight" should be around 135-140lbs. For those who say "just eat more", that doesn't work. For years I was accused by doctors of having anorexia because I had gotten down to 86 lbs at one point. It is so frustrating when people suggest just eat, eat, eat....it's not always easy to force feed yourself, just like... [ more ]
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J-Pouch ForumsGeneral Discussion
Rectum Pressure
A arodecker
arodecker Thank you for your advice! I will try that! [ more ]
Raj It depends on how formed is your output. I get this kind of pain either when I can't empty my pouch fully or with too much sugar intake or when stool is loose. Sometimes fiber supps can also increase the urges and gas pains. If your consistency is ok , then its probably due to partial emptying of the pouch, relax your muscles to empty it fully while on the seat. Try cutting back fiber if you feel its constistent enough. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you constantly feel like you have to go?
A Andreita
Andreita Thank you all. This will all be very new to me so I might come back and asked more questions. I'm amazed how the body can adapt to a missing organ. I'm so happy to be a j-pouch candidate. I appreciate the everybody's support. [ more ]
CTB23 No you should not feel constant pressure to go after takedown, especially after the adjustment period. As Scott says, this varies for everyone. The first few months can be pretty difficult so just be prepared and be patient and you should do fine. [ more ]
Raj I can sometimes hold upto 8 hours , its been 9 months post takedown now. I only go twice in short intervals during night after dinner and 4-5 times a day. Early weeks are tough with pouch but thing definitely settle over time. Practise doing tons of kegels and other bottom exercises to help strengthen those muscles. I still do them daily. Also don't worry too much about settling, these things take their own time. Everyone's different so you'll know your answer with passing time. Eat more... [ more ]
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J-Pouch ForumsGeneral Discussion
Total Colectomy + Crohn's
C capper
Still Standing I would also recommend trying another biologic. One might work better for you than another. I was on Humira, then Remicade (which gave me some not nice side effects), and am now on Entyvio which seems to be working. Know that all biologics have some risk to them. Study them out and choose the one you and your doctor believe will do the best for you. Thankfully, these medicines are not an all or nothing. Different meds help different people differently. Don't be afraid to try something new to... [ more ]
Scott F Trying another biologic makes sense to me. Since the Humira never got a chance to function, its failure doesn’t mean very much. [ more ]
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J-Pouch ForumsGeneral Discussion
Does drinking water make you need to go more?
I iHateColitis
Former Member ❤️
Bobish I find that if I don't drink enough water, I still need to go but get incomplete emptying. Drinking more water means I empty better and an more comfortable. I also find taking loperomide or too much fibre has the same effect of restricting emptying. It surprised me but reducing actually helped... Best advice is to keep trying new things, and don't forget to retry stuff you already discounted.. your body changes, as do other subtle things like diet. [ more ]
Scott F Yes, I hold in the poop (if there is any) when I pee. I think it helps with overall control and with pouch capacity. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch with Crohns Colitis?
J jsg121
Scott F I’m glad you’ve been feeling better, Laura! Blockages are generally caused by something that narrows the small intestine. Food can get trapped behind the narrowing, and that can lead to all kinds of trouble, but food alone doesn’t cause the blockage. They can’t test for adhesions, which are a very common cause of blockages. [ more ]
LauraLee Hi Scott, I would like to believe my blockages are caused by diet, and no by adhesions. I was tested for everything on my last hospitalization. Leaks, strictures, Crohns, Pelvic muscle issues, etc. Last two days have been the best health wide I had in a long time (over a year) and hope it means I’m on my way to finally recovery. Thank you very much for your advise! It is so good to count with such a great supportive group. It makes a big difference in my life! 👍🏼😃 Laura [ more ]
Scott F Most blockages clear up on their own, so it can be misleading to attribute the recovery to the treatment (e.g. Cipro/Flagyl). The GI biologics can be reasonable choices for both chronic pouchitis and Crohn’s, and might indeed make you feel better. If the blockages are from adhesions, though, no medication in the world will help. [ more ]
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J-Pouch ForumsPouchitis
Can diet or energy pills trigger?
A asdfqwer
Raj You don't need to supplement diet pills , they are highly processed foods far from natural. Sometimes multivitamins seem to trigger my pouch , so I take them very irregularly now. Continuous supplementing pills can cause a diaroehha like situation for me too. The only few supps I take now are Vit C , zinc , creatine (preworkout) , BCAA ( sometimes post workout) , 1 scoop whey protein and fish oil caps. For weight loss you can drink plain lemon water ( only lemon and salt) at night before you... [ more ]
asdfqwer Ingredients : A complete list of the MAIN and OTHER INGREDIENTS in this supplement can be found on the product label, which is included in the Amazon product images. Serving Size: 2 capsules Servings per Container: 60 Amount Per Serving: Green Tea Leaf Extract - 330mg. Green Coffee Bean Extract - 270mg. Raspberry Ketones - 200mg. Olive Leaf Extract - 160mg. Caffeine - 150mg. Bacopa Leaf Extract - 130mg. Garcinia Fruit Extract - 100mg. Chrysin - 100mg. Forskohlii Root Extract - 60mg. Other... [ more ]
katenet What is in the diet or energy pills? It’s possible they contain laxatives [ more ]
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J-Pouch ForumsPouchitis
Pouchitis Question
Cinder23Cinder23
Raj It may be iron or B12 deficiency if not due to dehydration. The fatigue is a common symptom in both. Once the colon in removed iron and B12 levels may go on the lower side very easily. Have you gotten any post op blood tests done ? You can try supplementing iron and Vitamin B tablets as they'll help recover from blood loss too. [ more ]
Cinder23 I always have 2 bottle of pedialite in the fridge. I am drinking average of 2l of water a day. Then I have other fluids. My pee is clear. No dry mouth and no headaches. I do not believe it’s dehydration. I have a call into my surgeon but am feeling a bit better today. I don’t feel as sick and weak and have had no hot flashes yet [ more ]
Winterberry Cinder23, if it turns out to be dehydration try to have some commercially prepared soup, especially clear broth. It won't go straight through you the way plain water will. I keep cartons of vegetable or beef broth in my cupboard. I also make my own. You can add rice or chicken or chopped vegetables and simmer for a simple soup, but the point is to get some sodium in. When I was leaving hospital after surgery, I was advised to eat potato chips or salted pretzels for the salt until my body... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Three Step Troubles
S StitchedTogether
duck11 Hi stitched together, It is a long road, but it does get better! The mucous and blood to defacate is normal and the urgency should improve over time. If not Id ask your surgeon to make sure there is no residual UC in the cuff (did you have your surgery for Colitis?) Are you connected at all? For my stage 2 my pouch/anus were completely separate from the small bowel--you are "disconnected" to let it heal, so nothing should pass through (but this was 20 years ago so maybe things have... [ more ]
Raj They are pretty normal symptoms , I wouldn't bother too much about the mucous and blood for the initial month. After that it will just be mucous/ yellow residual stool. J pouch is partially connected to the intestine so whatever you'll eat some fluid will pass through causing you to go and its the glands which were around the colon which used to produce mucous that still keep producing it that causes mucous formation post op. Also you need to remember that entire colon has been pulled out of... [ more ]
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J-Pouch ForumsPouchitis
Pneumonia Delaying My Remicade
CTBarristerCTBarrister
CTBarrister Having pneumonia between Remicade infusions is not what you want. I am hoping that as time progresses from my last infusion, which was March 26, the immune system will strengthen and enable me to fight it off. I have been dealing with it for 2 weeks now. The last two days have been better. I really need to have it clear up by May 6 so my next Remicade infusion on May 20 can be given. I have had a tendency to flare slightly towards the end of the cycle between infusions which is why I went... [ more ]
Scott F Well, the pneumonia vaccine doesn’t protect against viral pneumonia, so it probably didn’t matter. I hope you feel better soon, CT. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch
AngiebAngieb
Scott F It might be worth a discussion with your doctor by phone. You could work out a dose and duration to test the hopeful idea that you can eradicate this with a more aggressive single course of treatment. If that fails (the symptoms come back after the treatment is stopped) you may need prescriptions for a variety of antibiotics, at first just to find out which ones work adequately, for long-term rotation. This will generally be a better job for a knowledgeable gastroenterologist than a surgeon. [ more ]
Angieb Thanks Scott I do have a refill on Cipro 500 mg. I will get it filled. [ more ]
Scott F This could be incompletely treated pouchitis or chronic pouchitis. The good news is that this can generally be handled without the drastic step of abandoning your pouch. Some of us (me included) have to stay on antibiotics all the time. If that’s the case it’s best to find a few that work and rotate between them every few weeks. I only found one that worked, though. [ more ]
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J-Pouch ForumsGeneral Discussion
New Patient; J-Pouch Surg 03/26/2019
ToviaTovia
Tovia Thank you. I appreciate everyone's candor. Around 1995 I was diagnosed chronic depression and anxiety, we met in early 1999, and in late 2002 (I think it was) he was diagnosed as bi polar with anxiety. I've been very glad to see the conversation around mental health making its way to the foreground in the US. Even losing some of the stigma such diagnosis carried for so many years. I'm finding the depression, anxiety, and bi polar have been a big hindrance in this whole experience, but we're... [ more ]
Accept It I had my j pouch surgery in 1985 and diagnosed with depression and anxiety in 1988. I've taken antidepressant medication since. It helps with the frequency, as it causes constipation in a non j pouch person. I still have bouts of depression and anxiety and attribute it to my chronic medical condition. Good luck. You sound like a wonderful supportive spouse. [ more ]
Tovia I've reached the point of desperation...seeing him writhing in pain and tears has me grasping for every straw I might be able to reach...has any one tried anything like Bactine or Lidocaine? How bad was the initial sting and how long before the numbing kicked in? [ more ]
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J-Pouch ForumsPouchitis
crohn's disease in the pouch
ToniToni
Toni Dear Laura, I totally empathize with the life you've had with UC and post-operatively, including hip replacements so young. I had two separate "attacks" of UC. The first was in the early 1990's (in my 50's)and I went into partial remission for a couple of years. Then it came back with a vengeance which led to getting the pouch. Of course I worried about the impact of prednisone on my bones and mine have lost serious density. I ultimately had to give up most activities that threatened them. [ more ]
LauraLee Dear Toni, After reading your story I feel so close to you. I’m so sorry you had to go through all that suffering, but glad you found your way to live your life and enjoy what you do. That’s what it is missing in mine. I can’t find a way yet. Not physically, not emotionally because of my JPouch “issues”. My UC started when I was 21 years old. I spent half of my life in hospitals (4 or more relapses per year). Had my two hips replaced when I was on my 20’s (Prednisone excess). Finally after I... [ more ]
Toni Dear Laura, It's hard for people who aren't in our situation to understand the reality we live with. Like "accidents". I used to love hiking and just walking for exercise but because of perpetual, serious diaper rash walking is painful and three blocks is often my maximum. I had always had high energy and a sense of adventure but the colitis drained me. It started in 1990 and I was in and out of remission for ten years. After multiple hospital stays, with my weight dropping to 90 pounds, a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch since 1995 recently diagnosed with Crohns
Tammy1995Tammy1995
Tammy1995 What were your side effects with Lexapro [ more ]
1993SPouch Hi Tammy. I have Crohns, diagnosed after my IAPP surgery in 1993. I manage it with acupuncture and have not been on medication or had a flare for 20 years. In my experience diet is not what controls flare ups, it's reduction of inflammation and anxiety. In addition to acupuncture treatment, am on Lexapro for that although the first two weeks of this drug was absolutely horrible for side effects, I hung on and now am quite able to tolerate high stress levels. I don't think you're current... [ more ]
Tammy1995 No solid food is working right now. Raw juicing and banana smoothie with coconut milk and ice seems like its working at the moment [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post Surgery nausea
Cinder23Cinder23
Mrobinson_sr We were discharged today. Turns out the catheter was clogged on Tuesday, So a larger one was put in. Today the swelling must be decreasing because the volume has increased. Thank each of you for your help and comments. [ more ]
Accept It MROBINSON . Request a consult with the dietician in the hospital. They can request special food for your son that is more appealing to him. [ more ]
Winterberry What is he eating? Try not to limit food intake, even to avoid vomiting. He won't regain strength if he does not eat properly, especially now when the body needs nourishment. Three miles is a lot of walking. Protein, at every meal, is vital for the damaged and wounded tissues to begin healing, and to regain his strength and health. I know hospital food is not the best. For breakfast I used to see a dry bagel with a hard boiled egg on the plate. That was all. Lunch and dinner were worse. Who... [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
j pouch operation
T Tigerstripe
Scott F I had a true one-stage procedure (I never had an ileostomy). Yours sounds like a two-stage procedure, which is more commonly done. The surgeon warned me that it doesn’t tend to reduce overall hospital days, but since I was an airplane ride away from the hospital I considered it well worth avoiding an extra surgery. I did have a miserable post-op ileus that lasted 10 days, but that can happen even with more surgical stages. I’m glad I did it that way, but there is a greater chance of leaking... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Viral-related Dehydration and short-term Cipro
RockoRocko
Scott F Rocko, I’m glad you found something that works for you. Cipro is no longer considered a particularly good choice for Traveler’s diarrhea, just as it’s no longer recommended for simple UTIs, since safer alternatives exist. A couple of days of Cipro are unlikely to do you any harm. An even safer thing to try would be a high dose probiotic, which might similarly rebalance your gut bacteria. It probably wouldn’t work as quickly as Cipro, though, if it worked at all. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
J-Pouch vs Stoma Bag
LN Laura N
jan15 Very little to add to Jennifer and other responders. I too have a k pouch, after having a failed J pouch due to pouchitis among other problems. I can add what one G.I. doctor said—that people who only have cancer and not UC, in addition, generally don’t get pouchitis. So that’s one plus for you if you get a J pouch. I too had endometriosis and cysts on my ovaries. This is just my opinion, and I have no idea about the severity between yours and mine, but I didn’t have any contradiction... [ more ]
JenJen Laura, There is a lot of good feedback and info here...I hope it helps you get closer to understanding what mIHG work best for you. As others have said, I will echo that this site is often more frequented by those of us with complications. However, I will also say that my experience was that my local GI docs and surgeons didn’t have accurate info on complication rates, didn’t take into consideration my personal health, and were overly optimistic. Once I ended up at Cleveland Clinic and began... [ more ]
Scott F Strange, I only commented on the advice Laura’s surgeon provided, which was completely appropriate for the specific circumstances she described. There are plenty of mediocre surgeons, and I certainly wasn’t suggesting that every surgeon’s advice should be treated as gospel. It may well be that the most important decision made by a person considering a J-pouch is the selection of a surgeon. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Anemia common/serious with Jpouch?
V VHDan
Still Standing I failed to tell you I used a Stevia Blend, which is why the amount is so high. (It blended Stevia and Erythritol.) Pure Stevia would make this amount really sweet Sorry about that! [ more ]
Still Standing You were asking about a hydrating drink so here is one to try. I used it when on clears before my pouchoscopy this time and didn't feel so drained from losing electrolytes like I usually do. Its worth a shot anyway and isn't too expensive. the juice from 1 lime 1 splash of cider vinegar a pinch of sea salt (I used the pink Himalayan sea salt) 1/2 t. of stevia add water to fill your cup. (I used a 32 oz. big cup.) stir around and sip [ more ]
Janiep ❤️
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Explosive, painful, loud gas
Gemini-KGemini-K
Scott F SIBO can go on for a long time if untreated. What have you been doing to control the gas? Not all gas is SIBO. [ more ]
Gemini-K Thank you. This has been going on for a while. I don’t know much about sibo. Is that something I could have for a long time without knowing it? I just don’t know if what I’m experiencing is normal for having a j-pouch but it sucks. [ more ]
Scott F Excessive gas is sometimes a sign of SIBO. Mine was corrected by a couple of months of doxycycline. More recently folks have reported being treated for SIBO with Xifaxan, which is much more expensive but should usually have fewer side effects. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
issue when trying to sleep
MF Mike from Toronto
Mike from Toronto Thanks everyone for the input, I have some thing to try. [ more ]
Raj Maybe its something in your diet or timings of your dinner. I eat dinner by 8 pm and sleep at around 12 then have to get up once at around 5 am and then again at 8 am. I restrict my carbs intake at night , only a high protein and fats meal as dinner like chicken with little bread or hard boiled eggs with peanut butter on bread. Also I've noticed if my dinner is late or very large , I have to make few extra trips in night which definitely affect my sleep. I also take a tsp of pysillium husk... [ more ]
PouchLogic Have you tried probiotics? Usually I can just take them and stay off the antibiotics. I bet since being on the antibiotics for so long they aren't working well enough anymore and you are experiencing the effects at night. Good luck [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Cipro or Flagyl?
C Crazyred
Dog I had memory/amnesia like side effects when using Cipro. [ more ]
Scott F Flagyl alone never worked for me, and Cipro worked like magic, so it’s possible that effectiveness will drive your choice. In terms of side effects Flagyl probably has the edge. Cipro carries a “Black Box” warning from the FDA about tendinitis and tendon rupture, meaning (basically) that you shouldn’t use it if there’s a good alternative available. Some people do find Flagyl intolerable, though, mainly because of the metallic taste. I’ve been using both continuously for years, without problems. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Kidney stone
B Bubba1028
CTBarrister Stay hydrated! Hopefully this episode sent you the memo. Good luck- [ more ]
Scott F They gave you correct information. Kidney stones form when the stuff they are made of gets too concentrated in the urine. This happens when we’re not hydrated well enough. You’ll be able to take better care of your newborn if you stay well hydrated. However crappy you feel right now, getting dehydrated will make it worse. I hope you feel better very soon! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Pouch removal - I've done it !!!!
SaffSaff
Saff Hi Mike, oh am glad to provide some comfort for you then! There are actually quite a few people here that have had it removed- it’s just not so obvious to find as we don’t have a separate topic for removal - it would be easier if we did. But if you use the search bar at the top of the page and search ‘pouch removal’ you will find plenty of other people experiences also. [ more ]
Mdz122 Saff, thank you for sharing. I actually logged on today to the site for the first time in a while hoping I could find a post regarding pouch removal. For some reason I didn't think I would and have been feeling like I'm the only in the pouch world considering having it removed. I feel much better now though knowing it does happen to others where a point is reached that removal is necessary. I had my original surgery four years ago and have had nothing but constant flares. Last hope has been... [ more ]
Mysticobra I was in the hospital 11days after. Only because my surgeon wanted to keep an eye on me. Lol. Not because I had problems. She knew me well from prior surgeries. I don't follow instructions well. Hahaha. After 11 days they let me go. I was fine by then. Now that your out its just time and patience. It got better everyday after I got out. Not like previous surgeries I got worse. Having the removal and ileo was a breeze compared to the previous 3 surgeries. That's when I knew I did the right... [ more ]
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J-Pouch ForumsGeneral Discussion
Dr Shens view on medical marijuana ?
PouchomarxPouchomarx
Pouchomarx and they would be? cant get narcotics for needed pain so what is your alternative suggestion? [ more ]
Pouchomarx thanks but my question was specifically about Dr Shens thoughts on the use of it for pouches or in general. I know who, how, and where to obtain it.. [ more ]
Lesandiego While marijuana is legal for recreational use in CA, I work for an employer who receives Federal government funding. I have never done a drug test for this employer. But, the Feds do not recognize marijuana as legal (regardless of what state you live in). I used to get high from the age 14-17 out peer pressure, but like JAYMC, it made me paranoid, so I quit and have never smoked it again. Both of my husbands were pot-heads and it just made them slow and stupid (but, really no different than... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Another Small Bowel Obstruction
temotytemoty
jan15 The low fodmap diet eliminated bloating, which in turn – – I think – – allowed better transit and digestion. i’m not really certain what the process was with the diet. But it did work. It’s not an easy diet to adhere to and for that matter to even get onto in the beginning. There is quite a bit of information on this website and also links to a university in Australia. Their app is indispensable. It wasn’t until adhesions were remove, during the K pouch surgery, that I no longer had... [ more ]
Melfie Hi JLH, can i please ask what dietry requirements/restrictions seem to help you? [ more ]
Tanner Take VSL3 it does help. Has helped me for 10 years or more. Good luck [ more ]
See all 11 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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