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J-Pouch ForumsHelp! Need advice now!
Constipated and need help!
H HeatherPyle
Balletbarre Thank you so much. I'll see what I can do here. I had to quit the flagyl. Too hard on me. [ more ]
Bobish Yeah I eat meat, my staple is turkey or chicken, but beef prawns and fish too. I don't avoid lamb, just didn't crop up much, in fact lately I've been reading more ostrich or kangaroo as the local butcher is diversifying lol I eat mushrooms, corn on the cob, popcorn much as I like (and I'm a lousy chewer). My one restriction is spicy food, but that's only cos of the butt burn. I can have 1 chilli in a stir fry or a mild to medium curry but no more! I wouldn't quit the antibiotics just yet if... [ more ]
Balletbarre Do you eat meat? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Edited: Eosinophilic Esophagitis - Autoimmune related? Help Please.
T tulsamom
tulsamom Chronic pity parties are the worst! They color the rest of your life as unbearable. And nobody can afford to live that way. Thanks for the reminder! [ more ]
Jan Dollar Thanks! Not being in pain every day is a reasonable goal. However, it is not always possible. For me, after a lifetime of UC, and now more than a decade of enteropathic arthritis, I am settling on tolerable pain. Sometimes, you just have to go with good enough. You can't turn back the clock to before you had chronic disease. Beats the alternative of having a chronic pity party! Jan [ more ]
tulsamom Thanks for the kind words. I know I have some difficulty choices ahead of me. I've been researching everything and will decide what action to take with that info, and what the allergist says. It would be very nice to not be in pain every day. Wishing you the best, Jan! [ more ]
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J-Pouch ForumsGeneral Discussion
Going off TPN
M Mad
Randers.USA WinterBerry gave some great advice above. Use real foods, cooked, and try and use a blender or food processor on foods like chicken, roast beef, etc. Soft broiled salmon or halibut has protein and such. Also, make sure you get enough fluids.. this is not an advertisement, but in the past, two products that helped me were a high calorie high protein elemental liquid food, known as Peptamen..vanilla flavored, drank ice cold, was the best...Also, a product I still use often, Ceralyte 90... [ more ]
Winterberry Hello, Mad. I would treat your insides and your pouch as if it were a 1 year old toddler for now. Highly nutritious, soft foods for a toddler. Try things like soup (cold soup would taste great in the summer heat). Fruit smoothies for vitamins, add Greek yoghurt for protein, or avocado for good fat. Tofu or eggs. Fish, chicken, and peeled, well cooked vegetables. I keep bags of frozen fruit in my freezer for smoothies so I always have them handy and I don't worry about the fruit going bad. [ more ]
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J-Pouch ForumsGeneral Discussion
Post J pouch takedown
A Andrew16
Andrew16 I am sorry your having a rough time with your takedown surgery. Do not be discouraged by where I am at this point! Everyones body is different and everyone heals differently so keep your head up, try and be as optimistic As possible and you'll be okay. This is a huge obdsticle to overcome and it will be worth it in the end! [ more ]
Veggiescott I could have written your post myself including having Dr Greenstein as my surgeon! I am only two months post take down and regret sneaks in every now and then also as I am not having an easy time, but everyone - including Dr Greenstein - tells me I just have to be patient and it will get better. I have to admit it scares me to hear that you're still experiencing difficulties after six or seven months; I was hoping to be 'semi regular' by six months. I'm sorry that you're going through this... [ more ]
Andrew16 thank you winterberry, very much. It is reassuring that i am not the only one lol. i am on opium tincture, and lomotil together to control my bowels. This combo seems to work the best for me. For the butt burn, calmoseptine cream worked great. I am just taking it day by day, some days will be good and some will be bad. thank you all for replying. [ more ]
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J-Pouch ForumsGeneral Discussion
Anemia
LindsLaLu81LindsLaLu81
Annikki I had an Endometrial ablation in 2013 that solved the heavy bleeding but I have seriously wicked cramps. In 2016 I had Uterine Fibroid Embolization which took my periods from light to even lighter but I am still have painful periods. [ more ]
LindsLaLu81 Annikki, How did you fix the heavy period situation? [ more ]
Annikki I have a j-pouch and I found spinach to be my superfood. I eat it almost every day. However really you need to figure out they WHY. I had super heavy periods and once I solved that I was able to keep my numbers in range. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch for about 20 years and now hashimoto any others out there?
FrancesFrances
tinmaker Hi Frances! So sorry to hear about your digestive issues! I've had a pouch for 23 years and have had more changes over the last 5 years or so. My new normal for the last 2 years has been: No uncooked fruits, Minimum green and yellow vegetables (cooked or not), NO beef or pork (only chicken, turkey or fish). Lettuce and tomatoes in small amounts seem to be okay. I'm good with dairy, so I eat lots of yogurt and cheese. Eggs are okay. If I stick to this, I have no spasms or pain. If I stray,... [ more ]
Frances ❤️
Winterberry Hello, Frances. I am so sorry about your new difficulties. There are some online support groups for people with Hashimoto where you can post questions and answers, similar to this j pouch group, but specific to Hashimoto diet and food plans. I had never heard of Hashimoto before and only did a quick Google search. You have probably done all this already. Most dieticians charge a fee for their services and that might be a further financial burden for you. The cancer support centre I attended... [ more ]
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J-Pouch ForumsGeneral Discussion
Imuran or 6 mp?
H Halo52208
Halo52208 Thanks Jan [ more ]
Jan Dollar The side effect profile is the same for both drugs. Unless you are getting pancreatitis, then your symptoms should improve as your body acclimates to the drug. Two weeks may not be long enouh for this. If you are taking it in the morning, try taking it at bedtime instead. Also, be sure your doctor is informed of your side effects. You may need blood tests sooner than planned. Check this link for more info: https://www.med.unc.edu/gi/spe...tis/IMURAN%206MP.pdf Jan [ more ]
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J-Pouch ForumsGeneral Discussion
UC or not
heverhever
hever Hi and thanks for your reply, he is actually being considered right now for a fecal transplant. My daughter is really keen for this as he has had countless doses of Flagyl and some other really nasty antibiotic, I cant remember the name of it, but special permission was required for him to have it, it never worked, he still has c. diff. He saw his gastrologist today, his oncologist is also keen and been pushing for it, he has a scope soon, I think its a sigmoidoscopy as too small for... [ more ]
TE Marie HEVER, I am sorry your grandson and family are going through all of this Flagyl is what got rid of my c.diff, after 8 months off and on, in my j-pouch. Many here use it without the PN side effect for pouchitis. I don't know the percent that have this complication. I wonder if he is too young for a fecal transplant for his c.diff. [ more ]
hever Hi TE Marie, thanks for your reply. Yes it sounds like Serotonin and maybe other brain needs could be involved, I'll do some research on it. Bit worried about this PN problem as my grandson nearly 2, has had cancer for the last year, in his abdomen, a massive tumour, in remission now, but his treatment has included plenty of Flaygl, as he constantly has c. diff, reflux meds, Vincristine a chemo drug, all of which can cause PN, of course he is too young to tell his mum, still its a worry on... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scared
BranchyBranchy
Jan Dollar Do you have a history of cancer or dysplasia that would lead your GI to this conclusion, or were you just told you needed a scope and biopsies to rule it out? It seems like you are worrying prematurely. Jan [ more ]
Scott F It's worth doing a pouchoscopy, but I don't think the doctor has enough information to give you news like that. It's rare to get a GI malignancy after the colon is removed. [ more ]
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J-Pouch ForumsGeneral Discussion
Raw Broken SKin
L less70
Winterberry Hello, Less70. I bought a sitz basin and squeeze bidet bottles from Amazon (one bottle for home, one for away from home). They worked so well I bought an attachment for the toilet. They saved me when I suffered burn or fissures. Try filling the sitz basin with water as warm as you can tolerate. Really warm water will soothe the area and bring blood circulation to that area to heal inside. My barrier cream was Zincofax, the one used by rash-y, shouting babies. I hope any these work for you. [ more ]
roseviolet Hi, If you have time, warm sitz baths are good. Perineal bottles and portable bidets are available on Amazon and Allegro Medical, among other sites. They are inexpensive. I think I bought a pkg. of 3 bottles so I would have enough water to spray the area thoroughly. These are quick/easy to use to keep the irritated area ultra clean, the gently pat dry with soft bathroom tissue. (If tissue alone is used, some irritating residue will most likely be left.) Creams that worked when I used to get... [ more ]
Scott F Others may have creams to suggest. I'd recommend a bidet (there are some very inexpensive ones) and perhaps sitz baths. [ more ]
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J-Pouch ForumsHelp! Need advice now!
j pouch surgery while overweight?
B BrianSF888
TE Marie My BMI was at least 35 when I had my j-pouch surgeries. My doctor also said there wasn't a problem with my weight. [ more ]
Jeffsmom My son was 300 pounds when he was told he needed his first surgery. The surgeon told him to lose at least 30 pounds. Of course, Jeffrey heard 30 lbs, so he lost 30 pounds! You have to know my son! Anyway, over the course of time he lost another 100 lbs, gained 100 lbs back, lost 70, and now has put back 45. He doesn't realize all this yo-yo weight is going to kill him. This has all been with in the last three years. I have never seen anyone lose and gain more weight in such a short period of... [ more ]
Winterberry Hello, Brian. My weight during surgery and reversal was right for my height and frame so I don't have the experience you have asked for, but I hope this is helpful in other ways. If you trust your surgeon and he /she is not worried, you should be fine. Start now, two weeks in advance, to cut out sugar. You know that sugar can contribute to j pouch problems, and lead to frequency, bum burn, pouchitis. Cut way back on highly processed foods now. A few weeks after reversal you can try to have... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage
L 10larry10
10larry10 I'm pretty sure I don't have pouchitis. I am using an 18 mm stainless steel uterine dilator, the sort of gold standard of dilation (ha ha), and once a week to keep the stricture from closing down again. This is the first hemorrhoid I've had in my life and am using Prep H. I'm hoping when it goes away, the leaking will, too, but I may be naive about that. Any recommendations to stop the leakage? [ more ]
Scott F I guess the hemorrhoid might be responsible, but I've never heard of that. Perhaps you've been straining to get past the stricture, and that may have caused the hemorrhoid. Is your self-dilation with a finger or a dilator? An overly enthusiastic dilation can affect the sphincter. Another possibility is that you may have coincidentally developed pouchitis, unrelated to the hemorrhoid. [ more ]
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J-Pouch ForumsGeneral Discussion
Blocked J pouch
S SalT
RZRAZ You say that you feel your pouch being full. If that is the case and you do have a structure, it would be on the exit end. The good news is you can find out for yourself if it is a stricture. Just use your finger. I know easier said than done and I'm only new to all of this, but I just left the hospital with all this information on Wednesday. Maybe it's something you hadn't thought of. Hope this helps. [ more ]
SalT Yes I thought about a stricture. Really hope that's not the case. I recently had blood tests that showed I had very low blood sugar levels and I was extremely dry. Hope with a lot of liquids I can fix it . [ more ]
Scott F Not drinking enough can cause real trouble. Most of us get dehydrated before we start making pouch-shaped bricks, but your body could behave the other way. If you've developed a stricture that could also stop things pretty thoroughly. [ more ]
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J-Pouch ForumsPouchitis
flagyl
bederyparisbederyparis
Linda2004 I have used flagyl for a few years now- 250 mg a day. It keeps my pouchitis at bay. Anyone have issues with nerve damage to their hands, legs or feet? thanks. [ more ]
claire Sorry to alarm, but it's good to be informed.. I am not against antibiotics per se but just have a lot more respect for them now then perhaps I did in the past. And there are oftentimes safer drugs we can use for pouch but they are more expensive like Rifaximin or other safer antibiotics, that should perhaps be offered to us to try first before such big guns!!! flagyl is well known to have potential to cause neuropathies. Cipro too, although Cipro is emerging over time to have a very dark... [ more ]
bederyparis claire good morning from Paris- your testimony is alarming - what are the side "life altering effects " of long use of antibiotics? thanks [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
C capper
Deve Actually yes I gained a lot of weight back while on remicade, maybe about 60 pounds. Now I'm very skinny not because I don't take remicade anymore but because I have an anal structure. [ more ]
GraceB I had my J-pouch surgery in 2010. For the first 5 years I had a hard time with it always getting pouchitis and on antibiotics. I have learned what to eat and not to eat. During that time everyone here was very helpful and still is. I still can not gain any weight and have problems but not like before. My gastro never mentioned going back on Remicade after my surgery. Maybe because the remicade didn't help me before the surgery. I was on it for 2 years. For the ones that went back on remicade... [ more ]
Jan Dollar I never was on biologics prior to colectomy. A decade post colectomy I developed enteropathic arthritis and was started on biologics, going through Enbrel, Humira, Simponi, and Cimzia. More than a decade after that, I developed chronic pouchitis, and I was switched to Remicade and Imuran. I have not been diagnosed with Crohn's, but like CT explains, it really does not matter. Just doing what is needed to remain functional. By the way, I have been fine with all these years of biologics, and I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
4 Days Post Takedown, Curious
RZRAZRZRAZ
lablover Wow! A day! My husband spent 5 days in the hospital with both of his surgeries. I hope you start to see the improvements soon! [ more ]
RZRAZ Thank you so much for the info on those symptoms and of course, everything else. It's very nice to have people to be able to talk to about this that actually understand what I'm going through. I spoke with one of the surgeons today that was on my team. He said almost the same thing you said, that all of this is typically normal and I should expect to see improvements after the second week. [ more ]
Winterberry Hello, Rzraz. For me, the symptoms of pouchitis are frequency (more than 12 times in 24 hours), constant urgency, feeling like you can't leave the house, constant gas, loose stool, burning at the exit, bubbling noises in the stomach or pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Best Surgeon at Cleveland Clinic or elsewhere?
D DavesGirl
BillV My BCIR surgery was done in St Petersburg, FL and I live in northern Wisconsin. I was in the hospital for the customary 21 days, which allowed me to be able to travel for 12 hours home with no problems. The trip involved a 45 minute cab ride to the airport, a flight from Tampa to Milwaukee with a plane change in Atlanta, and finally a 5 hour drive to Rhinelander. My nurse at the hospital prepared me for travel and gave helpful advice on traveling. At the airport, they had a wheelchair and... [ more ]
Kara Fred Dr David Dietz; he left the Clinic and is just down the street at University Hospitals. I presume most people with complicated GI issues do travel to see the best doctors. There are several threads on how they handled traveling for some advice. I feel for you as it's a lot to handle to travel and not feel well. If you are considering the Kpouch or BCIR, you should see the best surgeon you can. All the best and positive cyber thoughts being sent your way! -Kara [ more ]
DavesGirl Any others? We hear great things about Dr. Remzi. Traveling from Montana to New York is not only costly but not sure how well my hubby could handle it after surgery. We can handle the cost, but can he handle the sitting position for that long? And one layover? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pre-take down, bleeding ulcer in the pouch
LC Linda Currey
Linda Currey Follow up - chatted with my GI doc and filled him in on the surgery. Evidently this is a rare post-surgery problem, the inflammation/ulceration was probably caused by a combination of poor circulation and the chemo. He took a deep breath and said we are now going to practice 'kitchen sink medicine'. Since the J-pouch is not taken down it's almost impossible to get meds to the site of the inflammation. So I'm taking vitamins to help me heal and spending quality time in a hyperbaric chamber,... [ more ]
Linda Currey And not taking anything for the ulcer. Just the lomotil to help control the cramping. [ more ]
Linda Currey Surgery was in September, followed by 4 months of chemo. I thought the chemo was causing the inflammation, it did clear up for a few weeks after, but it's back. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL #3 Probiotic - Thoughts?
J JeremyNY
drone3 I used to take VSL #3 4 sachets a day. I spent thousands of dollars over the years. One day i figured out it was triggering my arthritis, so i switched to a much cheaper probiotic it didn't seem to work as well. Then i tried taking it before meals usually 10 min before a meal and bang it works really well. Im now of the opinion that if you find a good enough probiotic and take it 10 minutes before each meal you get great results. So before each meal i take x2 probiotic capsules and x1... [ more ]
Janiep VSL #3DS IS WHAT I TAKE AND IT IS A GAMECHANGER FOR ME!!!!!!!! [ more ]
Scott F Jeremy, I find that VSL is worth it for me. As CTB wrote, there are discounts and financial assistance available on the VSL web site for the prescription-only VSL #3 DS. In addition, some insurance companies cover it. I managed to persuade mine to cover it, but it took me about a year. [ more ]
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J-Pouch ForumsGeneral Discussion
Life after jpouch removal
C Crystal<3
Lambiepie Crystal, sorry about your complications. Things will continue to subside as you heal. I felt sore and tired for about four or five weeks.... Clear bloody leakage from where? I didn't have that, but I did have a sore butt for awhile. Don't let the doctor or anyone make you feel like you're being a baby if you need more pain meds for that. I needed more Percocet after this surgery than after my first three. When you get down or sad, read your jpouch posts to remember exactly why yours needed... [ more ]
Winterberry Crystal, I'm sure you are so happy to be in the comfort of your home. I'm sure someone who has been through the removal surgery will post and let you know what to expect. Get lots of rest. I hope everything heals soon. [ more ]
Crystal<3 I was in hospital for 2 weeks..I had some complications but am home now..I am very sore ..Especially my behind...I hope this heals soon.. is it normal to have like a clear bloody leakage? And for how long. i can't wait until I feel better ..I think this is the worst surgery I have ever had .. Thankyou for asking how I was doing [ more ]
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J-Pouch ForumsHelp! Need advice now!
K pouch probs. please help. I'm miserable
A angilanr
angilanr Wow...you are a pro. Thanks again for.all your great advice. Ang. [ more ]
skn69 Your pouch and valve were created by them cutting 30cm of your intestine...that hurts. Things were moved around a lot in there...that will take time to heal...give it time. I didn't figure out that I had pouchitis, I didn't know what it was. I called my surgeon and he figured it out...But that was 38 yrs ago...I have had a bit of experience since then... In my case, it felt like stomach flu, gastro or food poisoning...miserable, crampy, cranky, gassy... Overcook your foods for now, drink... [ more ]
angilanr Thank you so very much. All amazing ideas the I will try. So your pouch works well with lentils? I may try that. I have malabsorbtion so alone seeds and nuts are mostly out and meat is diff to digest hence the vegan. Don't get me wrong it was a medical thing not a life plan. Haha. I am having some bleeding with cathing and my aroma picks out a smidge when I get bloated. Just at the edge. One more question...how did you find out you had pouchititis? This thing is alot like a newborn I... [ more ]
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J-Pouch ForumsGeneral Discussion
Radiation
JD Jeff D
chiromancer I had radiation for a rectal tumor before surgery and my j pouch failed, was it related? probably. I would say that after radiation it is probably best to go with an ostomy, the data points in that direction. One thing we know is that the small bowel is much more sensitive to radiation than the large. [ more ]
Balletbarre Wrong diagnosis originally? [ more ]
Winterberry Hello, Balletbarre. I'm sorry you are facing so many difficulties. Can you try Metamucil before your meals? It might help to bulk things up so that you can hold on. Liquid stool is difficult to hold, especially while asleep when your muscles are relaxed. Have you had an endoscopy to check for pouchitis? What does your old specialist say about help, if he says the pouch is not working due to radiation? When you can't have a bowel movement while on the toilet unless you stand up and sit down... [ more ]
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J-Pouch ForumsHelp! Need advice now!
The ongoing Butt Burn..... Question about lemon water
VeggiescottVeggiescott
Annikki I cannot drink citrus juice as it cause fire bum but I have no issues with adding a slice of lemon and lime to my water bottle. I also add Ener-C to my bottle once a day. http://www.tryenerc.com/ [ more ]
Veggiescott I have to admit I was very skeptical at first about a post I read by ANDREWAZ707 advising to squeeze lemon juice into water and drink that twice a day. Well I have to tell you I started doing that right after I originated this thread and I can't believe it but it's actually working and I'm really really happy about it. A dramatic difference. So shout out to ANDREW707, thank you for the advice and I hope it continues to work. [ more ]
Albannach I find that if I don't take psyllium husk with meals (and especially if I miss meals), my stool is much harsher on my skin. If I take psyllium husk, I can eat pretty spicy food and it doesn't bother me. [ more ]
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J-Pouch ForumsGeneral Discussion
IBD and Cannabis
D d_bergman
drone3 Cannabis use wasn't worth the shift in mental state for me. To deal with a chronic auto immune condition you need to mentally be very strong, cannabis altered my mental strength and drive and was a net negative at the end of the day. Nicotine has been beneficial but obviously not worth the lung damage. [ more ]
Former Member I dont need to read a little closer. I've not discounted anyone thoughts, I've expressed my thoughts on a forum post that I and everyone else on this forum has been invited to respond to. A forum member can't ask for a groups opinion on a subject and expect all opinions be in agreement. Forums members who support the use of cannabis shouldn't turn against or attempt to belittle the opinion of others. I'm pretty certain the senior management of cigarette companies, Hollywood movie directors,... [ more ]
RollinwithnocolonJH I also didn't like the high feeling so i took it at night. I make sure I'm not home alone with my 7 year old, and that my husband is home as well. to me the side effects of narcotics are so much worse. I was going to the bathroom 15-17 times a day sometimes more. I literally tore my pouch and created a fissure from pooping so much. I was at my wits end. I was on antibiotics, steroids and narcotics. Nothing even came close to touching it. I finally asked a friend who has severe anxiety if I... [ more ]
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J-Pouch ForumsGeneral Discussion
Intestinal Blockage
JeffsmomJeffsmom
drone3 I had constant blockages over a period of three years until i figured out i just couldn't eat anything hard specifically - nuts, seeds, peels. Blockages can come from adhesions and even crohn's inflammatory narrowing. Either way a healthy diet is absolutely essential to maintain a healthy environment in the intestinal tract and pouch. If there are constant blockages i highly recommend sticking to soft and smooth foods, you can even get a vitamizer if required. [ more ]
sudie Hi mum. I have had 6 blockages now since just before Christmas needing hospital with Ng tube each time pain meds and to stop vomiting,on one visit had adhesion surgery hoping this would help but have had two since,the surgeon now has me taking gastrograffin when the pain sets in so I don't have another hospital trip it worked last week I don't take any bowel slower products I have had help from a dietician doing fodmap diet which really helped ,we feel and have noticed that when I eat fruit... [ more ]
CeeeeCeeee My one and only blockage was caused by my small intestine twisting on itself. Most painful experience of my life! Six days in the hospital. Four on morphine. My surgeon held off operating and massaged my abdomen very firmly each time he visited.....ouch!!!!! After four days things "unkinked"! Lucky me! The ng tube was quite an experience.......not having it in but getting it in! Having it in was a breeze! It's been 12 years and I haven't had another blockage. Yippee!!!!! [ more ]
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J-Pouch ForumsK-Pouch Korner
ICU
skn69skn69
skn69 Exactly Patricia, I have been home for nearly 2 weeks and I am still mind boggled at the fact that no one even knew that k pouches exist! The number of medical staff who told me that this is a wonderful idea...When was it invented? When I told them that mine was 38yrs old they gasped! Why wasn't it being offered in France? Why weren't people talking about the 'other options' to outside bags...I had nurses sniffing me to see if I had a smell! (yup, apparently here, most people with end ileos... [ more ]
Patricia Walker Hello Oh! I so understand how difficult it is explaining K pouch once admitted to hospital. This is just what happened to me a year ago when my valve jammed. In the end I ask for a pen and paper. In shocking pain I tried to draw and explain everything. I finally politely said "look it up on line". 40 years of K pouch and still feel I face a brick wall. Once nurses understood they were interested and very kind. Best wishes [ more ]
skn69 Thanks Bill...I have been 'stepped down' to a normal nuro room ...having a cardiac CT scan with contrast and an arteriogram....crap...these guys so not fool around! Starting to feel rather furry and guineepigish... Not sure if they bill by the test or the minute but I am thrilled to have 3 insurances. Years ago at Mt Sinai, I was to be discharged day 7 post op pouch repair...on the night I started kicking up a fever, by morning nausea and chills...my head pounding...the orderly showed up at... [ more ]
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J-Pouch ForumsGeneral Discussion
Arthritis
DB Dr. B
drone3 I have AS, it took me a year to figure out how to manage it. This is what i do to avoid flare ups and live mainly pain free. 1. Diet - no sugar, no alcohol, no caffeine, no preservatives, no starch (this is absolutely essential, you can go to kickas.org to learn more) Basically you need to go Paleo. 2. 35% Food Grade Hydrogen Peroxide drops in pure water x3 daily 3. Avoid trigger movements and scenarios, ( for me it involves not sitting on anything hard and no contact sport) There is... [ more ]
Annikki I was recently diagnosed with Enteropathic Arthritis. And like my UC it's attacking my joints in all my limbs. I have just started taking sulfasalazine but it takes up to 12 weeks to start working. [ more ]
Jan Dollar Impossible to say. If you have IBD related spondylitis, it tends to progress more slowly and have less joint damage. Of course, treatment slows progression, so that is important. I would not ignore it. Jan [ more ]
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J-Pouch ForumsPouchitis
Drinking Diet coke keeps me from getting pouchitis?
Beth-Jpouch1991Beth-Jpouch1991
DJ H I've often wondered if pH levels play a factor in some of this, i.e. switching from acidic to more alkaline and back and how that affects the pouch and digestive system. [ more ]
Beth-Jpouch1991 update: I think all this time it has been cuffitis? I currently have it and 1,000 mg of Cipro is not working. Will try suppositories next (yay)! I still think this only happens when I stop drinking diet coke!?!?!? When I stop and switch to other caffine drinks, that's when the cuffitis happens? And no, Bobish, the iced tea isn't sweetened (you are correct with that assumption). -This too shall pass! [ more ]
Beth-Jpouch1991 ❤️
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J-Pouch ForumsGeneral Discussion
Anal stricture treatment after healed fistula
DeveDeve
Kenny D No problem. No real side effects except headache from rapidly opening blood vessels, minor dizziness, all temporary. Please keep us posted. all the best! [ more ]
Deve Yes he had a hard time getting a pediatric scope in there, I screamed when he did it even after being drugged. I guess that's why he says it's scar tissue and with the amount of bowel movements that I reported daily. I'm from Western NY State in the Southern tier near Pennsylvania. My primary doctor will probably give me the cream if I ask, as long as it's not risky in some way. He usually doesn't have a problem prescribing much of anything. Thanks for the help. [ more ]
Kenny D Did he find anything with the camera? Is that how he concluded scar tissue? Has he heard of ultrasound, its non- invasive, and can detect if it is scar tissue. Anyways, moving forward, use stool softeners, get orange flavoured Metamucil and stir it into water so you have a consistency that flows like soft ice cream. It stimulates the bowels and give a smooth consistency upon exit. One other distasteful thing I have done in the past: I will roll my fingers in toilet paper, lean to the left or... [ more ]
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J-Pouch ForumsGeneral Discussion
Thought Humira might be the answer but he needs the pouch OUT! 😥
D DavesGirl
Mysticobra Hello. I am so sorry he has gone through all this. And if he is reading this I gave up with 1/10 the problems and time. Time was the problem with me. I will be two years out from removal in October this year and I'm still recovering from the damn thing. I couldn't keep it because it was slowly killing me. Of course I didn't realize it until 26 months of having it. My surgeon wouldn't do another pouch. She didn't think I would survive. I look back and I know I wouldn't have. Like I said. I'm... [ more ]
Scott F I pretty much agree with Jan. I brought up pouch options because you described your husband as "devastated." Trying again with the very best surgeon isn't crazy, but the history suggests a higher risk of failure. [ more ]
Jan Dollar I am so sorry your husband is dealing with this nightmare. A diagnosis conversion to Crohn's could be at the root of all his misery. Nobody has to do anything wrong or be negligent in not knowing in advance this was Crohn's all along. IBD is notorious for being very difficult to sort out and it can take years or decades to fully manifest. If you want to travel to New York (Dr. Remzi), Cleveland Clinic or Mayo Clinic (which both have specialists in IBD surgery), you might get reassurance that... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Thought it was pouchitis- need pouch out!
D DavesGirl
DavesGirl Thank you Bill. We will definitely look into this. We are leaning toward Cleveland Clinic. [ more ]
BillV I would definitely go for a second opinion to determine (1) if anything can be done to save the present pouch, and (2) if there is sufficient intestine to make a third j pouch or a continent ileostomy. When medical issues made removal of my J pouch necessary, the surgeon who did my second opinion at Mayo Clinic would only recommend an ileostomy, which I strongly did not want for its quality of life issues. There are two alternatives to the end ileostomy that do not require having an external... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch lasted 20 yrs now take it out?
D DavesGirl
DavesGirl Thank you! That gives us such hope! [ more ]
Kenny D The jpouch can be reversed and he would be on an external bag temporarily, until they sort out the pouch. Maybe they can fix it, maybe not, it sounds like there are severe issues, plus crohns can flare again. when I had the jpouch reversed at 30 years old, I never felt better. There were issues, but none of the pain. I even played hockey. My doctor had to convince me to go back to the Jpouch. Now I'm 60, and I would go to the bag in a heartbeat if needed. It's about quality of life, not... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Help..wanting to get off opiates suboxone/subutex takers..
K KC23
skn69 Thanks, It is just so frightening to go through everything alone...hubby is useless in medical situations, panic is his default setting so he barely remembered to bring me deodorant...fortunately cell phones exist and he would call from the bathroom or bedroom. As for friends and family...they are in the 'oh, she is just sick again...' mode...meaning that it isn't very important when it happens to me...I will survive, they don't need to bother to check in on me. As for the meds, I just... [ more ]
Jeffsmom Sharon, youmare correct. Last year Jeffrey came off opioids way too fast. He could have killed himself! He was on fentenal and oxy and God knows what else. He came off in two weeks time. Way too fast. But he did have some anixity medication to counter the side effects. Sweetheart, please know that so many people do care! We may not all be there but you are in our thoughts and do care! Please slow down a little bit and take care ! When are you coming to the US? [ more ]
skn69 KC, I do 95% of my workouts at home. I own about $50 worth of equipment and that is it. I have been using most of it for around 10 yrs...that comes out to about $5/yr in expenses... I use: 1 large pilates ball, inflatable. 1 small inflatable ball (about the size of a soccer ball) Hand weights: in bracelet format. 1lb and 2lbs Elastic bands, all sizes and shapes 1 yoga mat. Various back belts, knee braces etc according to my needs. Most of my workouts are based on me climbing stairs, walking... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Would botox help my fissure?
R RB15
RB15 Thanks again Scott I actually asked the surgeon how i would know if i was having spasms, he said that i would feel a cramping type pain down there (which i never do) only pain from the fissure. He said if he were to do the botox he would first scope the pouch and check everything is ok, then would check if the fissure is internal or external. I asked him about incontinence and he said he has a very low % who suffer that and that he would only yse a very small amount on me. I hear you... [ more ]
Scott F The diltiazem's key advantage is that it doesn't cause headaches. It's hard to predict whether it will be more or less effective for you than the nitrate in the rectogesic - their mechanisms are very different. Pouch prolapses can vary a lot from just loose mucosa getting in the way of pooping sometimes to the extreme version where the pouch protrudes (inside out) from the anus. I don't know that you have a prolapse, and the infrequent symptoms could make it harder to detect with a single... [ more ]
RB15 Scott F - is that all a pouch prolapse is? The name sounds pretty serious, but yes it comes and goes and its almost as if the anus is constricting in that very moment causing the stool the block up and stretch the fissure, yet the consistency is always the same afterwards so i know its not that. I have got a tube of Diltiazem but have not used it yet, has it got a better reputation for healing than rectogesic? I will try do a bit of reading on everything, thanks for the help! P.s. Do people... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Post knee surgery and sore tummy
ktakta
kta Thanks, Scott, for replying. Yes, I did mean I am *not* in screaming pain - the brain is still fuzzy from surgery. The body does seem to be sorting things out. I finally decided I had a bit of a blockage due to decreased motility and gave myself an enema. That got things moving and the stool has been more solid since. The tummy still hurts in a band across the top but I think that is just residual from the blockage. Right after the enema, I could feel gas moving more freely and figured... [ more ]
Scott F It could be C. diff, and a hospital is a great place to get it, but it could also just be the physical aftermath of surgery. I hope you meant you're *not* talking screaming pain, and I hope your body sorts itself out by the time you speak to your doctor. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Bowel Resection Soon
temotytemoty
skn69 Temoty, Although I was not subject to adhesions and obstructions for over 30 yrs, in the last 8 I started to get both. I had about dozen pouch redos and various hernia and obstruction surgeries between 2000 and 2015. The first obstructions were more like an ileus (when your bowel doesn't wake up post op or worse, 'falls back to sleep' so to speak after a few days...it can also be the sign of bowel swelling. As time went by I found that I had some repeat sites where my bowel seemed to twist... [ more ]
temoty thanks for the replies. [ more ]
Winterberry Hello, Temoty. Call the surgeon who is performing your resection and ask if you can talk with one or two of her patients who has had this procedure done. Surgeons and doctors sometimes have a list of their patients who are willing to be a peer patient and can give you support, information, tips on what to expect, and aftercare. Your own GP might have some patients who are willing to talk. Try not to worry until it is actually decided to resection. Good luck. [ more ]
See all 7 replies...
J-Pouch ForumsFAP Forum
New with FAP and due to have surgery in June
J Jennga
Angie Wilson It's great for you guys to have other young people to talk to - no offense taken by this 54 year old! I remember being 20 and someone in their 50s was someone on another planet!!! Plus, so much has changed in terms of how surgery is now often done in one step etc. We all want to relate to our peer group - that never changes. Good luck to all young j pouchers and as the years go on - it will get better and better - and then one day, offspring will have the gene edited out or something and no... [ more ]
LeahD I absolutely feel the same way. I'm also the youngest person in my family to have the surgery, but it's only been passed down to one person per generation so far, and I'm only the third. Likewise, welcome! It may be a shitty club, but it's great for post-surgical puns If you ever need to vent or talk or have any questions, or if you just want to talk about something else, feel free to message me! I'm happy to connect! [ more ]
FAPqueen Hey! I'm recently diagnosed as well, on the aiming list for my jpouch! I'm 20 years old and no offence to any of our older members but it's almost comforting to hear another young person joining the FAP club. I'm the youngest person in my family to get my surgery so that definitely doesn't help ! So welcome to the club, sorry it's not a cooler club to be in lol Hope to talk to you! [ more ]
See all 26 replies...
J-Pouch ForumsGeneral Discussion
Has anyone done spinning with a jpouch and then bleed after?
J jeane
lablover my husband does spinning and it doesn't affect him. Feel better!!! [ more ]
Scott F I'd use xylitol (and sorbitol and mannitol) very sparingly, if at all. They tend to cause diarrhea. As part of a conscious process to manage stool consistency the sugar alcohols might be fine, but otherwise they are potential trouble. [ more ]
jeane Will do. Thank you. I believe some of it is from has release during sleep also. I just cannot believe I slept over five hours last. night without waking!!!!!!!!!! I never sleep on my stomach as at my age I'm trying to avoid those facial wrinkles from your face mashed in the pillow but I'll do anything for sleep these days!!!!! [ more ]
See all 11 replies...
J-Pouch ForumsFAP Forum
New Member, upcoming surgery.
L Lisa1989
LeahD Hi there, Lisa! Hope this finds you well. I was diagnosed in 2014, had my surgery in 2015. My polyps were similar to yours; my entire colon was completely covered with small to large polyps, no dysplasia. I met with the surgeon who did my mom's pouchitis surgery in 2001, then a second surgeon who works closely with my GI doctor. Both had different plans: one wanted to do laparoscopic, which was fairly new at the time, and should take about three hours; the other wanted to do laparoscopic and... [ more ]
Lisa1989 Thanks Bill and Bobish for your replies. I have had one surgical consult with Dr. Rehnke myself and am impressed with the BCIR procedure and he said I would more than likely be a candidate for any of them, however once they get inside things could change due to internal structures and or issues. Luckily he is just about 30 min from where I live here in Florida. I am meeting with Dr. Julian Sanchez who is at Moffitt Cancer center on the 26th of this month for his medical opinion on which... [ more ]
Bobish Your physical size determines how much rectal cuff the surgeon needs to leave in. Im a thin guy so apparently he could leave minimal cuff. Surgeons like to remove as much cuff possible of the colon comes out, because it's part of the colon and can be subject to further disease! It sounds like that would be a call for your surgeon for your specific circumstances possibly even while your in the table,. But if your real thin my understanding is they can basically get rid of all the rectal cuff. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
adhesions
M mads101
Annikki I had problems with adhesions when I was pregnant and they were being stretched and ended up going to the hospital because I was in so much pain. I also can feel one at my old stoma site when I stretch too far. Feels tight. [ more ]
Marcella Thanks for passing this information along. I have had my j pouch for 15 years and the last two have been very stressful with infection, partial blockages and lower abdomen pain. The past month has been especially fun. I also have rheumatoid arthritis. Double the fun! But, I keep to my daily routine , go to work ,and smiling as much as I can. [ more ]
Jan Dollar Both of the above are correct. To clarify, adhesions are bands of scar tissue that form internally in response to surgery, trauma, infection, foreign bodies, etc. When viewed directly, they appear almost like ligaments or tendons, in that they are dense tissue that do not stretch. Anyone who has had abdominal surgery has adhesions. Most of the time they feel like nothing because they do not have nerves in them, unless nerves got trapped in them incidentally. They do not show up on x-rays or... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Iron supplements
mgmt10mgmt10
Scott F Bill's combination with Vitamin C really does help absorption. There's a combination product called Vitron C that has both in a single pill, but Bill's method sounds less expensive. [ more ]
BillV I take one 325mg tablet of Ferrous Sulfate daily with 500mg of vitamin C, 2 hours before eating breakfast. This brought my iron level into the low normal range, which my PCP said was OK. I just learned from my daughter, who had weight loss surgery, that this kind of supplement did not work for her. Her doctor recommended a supplement called Proferrin Forte, which she says makes iron more absorbable for people with shortened intestinal tracts. I know nothing more about this product, other... [ more ]
CTB23 I am just taking 65mg pills. I had lab tests in March and things are ok right now. Unfortunately I haven't seen the actual numbers, just a call from the doctor's office that indicated no issues. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Jpouch removal and permanent ileostomy
C Crystal<3
BillV Ginny, I am sorry that you are having such problems with your j pouch. I had mine for 30 years and experienced higher than normal frequency, leakage and butt burn. Ultimately, recurrent high grade dysplasia in the anal cuff and weak sphincter muscles made pouch removal necessary. I strongly did not want an end ileostomy for quality of life issues, but a number of posters on this forum have had good results with them. Instead, I opted for a BCIR (similar to a K pouch) that does not require an... [ more ]
Gin3737 Thanks so much Paulette. I very much appreciate your quick response. Just reading on this sight is very helpful. Thankful you are feeling better and as soon as I have a couple of appointments with the hematologist and my rheumatologist I know I have to make a decision. I already have had 2 surgical consults. [ more ]
TE Marie Welcome to J-Pouch Group Ginny! I had chronic cuffitis and pouchitis that ultimately led to my failed j-pouch. Long story short I had it removed 5+ years after I had the surgeries and wish I'd had it removed 18 months before I did. I feel much better . First I had my j-pouch diverted to a permanent ileo and 6 months later had my j-pouch out as it didn't get better. Nothing was going through it but it was still sick. I should have had it all out when I diverted but I was stubborn. I have read... [ more ]
See all 24 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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