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J-Pouch ForumsHelp! Need advice now!
eating
L La-Te-Da
Maverick Plus Could 8 liters of water be too much? The advice I read is about 3 liters for women and about 4 for men. I realize we (with j-pouches) may need more, but I would think that twice as much may be too much. Of course, if you are following your doctor's advice, then never mind. [ more ]
Former Member Protonoix and Magnesium helped me int he past. It might help you? [ more ]
SteveG Are your BM comparable to how it was before pouchitis? If they are more irregular and you're also feeling stuffed after eating solid food (besides nausea), that may be a symptom of a partial blockage. If it does not get better, I would have your GI doc do an ultrasonic scan, that's not a big deal. [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's and the jpouch
J JoeJoe
JoeJoe Thank you. I'm so happy for you and everyone on here who have been having a good quality of life with the pouch. I'm happy I had this surgery and have the pouch now. As we all know, it takes some adjustments and seems to be a continuing learning. The UC absolutely destroyed my life and took so much opportunity from me for too long. I'm grateful for every as I have been given a second chance at life. 11 weeks out from take down. [ more ]
Portia Hi JoeJoe! I’ve had my pouch for 30 years. It’s been a great ride for most of that time. The pouch gave me freedom to work, play, and travel that I don’t think I would have had with an ileostomy. It gave me tremendous quality of life. And I definitely don’t regret that I made that decision even though I just recently received a Crohn’s diagnosis. I agree 100% with Jan, ever the voice of reason on this site. Wishing you all the very best, JoeJoe! [ more ]
Jan Dollar Yes you can. Some say that you had Crohn’s all along, but just not manifested yet, when you develop Crohn’s post colectomy. Others (more recently) say that you can get a totally new IBD as Crohn’s that develops independently. I am unsure that it really matters. I recommend you enjoy your j-pouch and not worry about the future. None of us knows what our future may bring. I have had my j-pouch since 1995 and do not have Crohn’s. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic pouchitis
vallivalli
Wendyy @valli Have your doctors gave you the option on going to a permanent ileostomy and taking the jpouch down? I’m currently experiencing “mild pouchitis” and doing mesalamine suppositories at nights they are helping with the symptoms but there’s days I feel so crappy and im constantly on the toilet pushing causing very bad pain, I just can’t imagine what your going through… im fairly new to this and I really don’t want to deal with this the rest of my life after takedown. [ more ]
woogy I've had my pouch since 2018 and also have had nothing but issues. My final surgery was in November 2018 and I started antibiotics for pouchitis in January. They started with 7 days which worked but the pouchitis always came back within days off stopping the meds. I've been on Cipro and Flagyl daily since and I still have issues. I get to the point where I feel like I have to go but hardly anything comes out. So there's constant pressure in my pouch because I can't empty it and it's so... [ more ]
Jrt1352 Thanks for the insight. [ more ]
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J-Pouch ForumsHelp! Need advice now!
passing gas
L La-Te-Da
Former Member Your welcome dear [ more ]
La-Te-Da Thank you for the information!! I will keep you posted! [ more ]
Former Member I am sorry this is happening to you, I was going to suggest that it could be a blockage but since you are pooping, that is good. Glad your scope is coming up, definitely keep me updated. Sometimes calling daily for cancellations can help move up the scope surgery since some people cancel randomly. I would try calling to check around 10am and about an hour before closing, that helped in my experience get things done sooner. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis?
J JoeJoe
JoeJoe You are right on all that and I appreciate the info. [ more ]
Scott F My pouchitis symptoms are exactly what CT lists. People report other symptoms, too, so it’s sometimes a tricky diagnosis. I’d avoid using the simple term “flare-up,” because it means so many different things to different people, and can keep us from getting a proper diagnosis. You can only have a flare-up of an underlying condition (e.g. UC, pouchitis, cuffitis, etc.). Many of us got used to the term as a way to describe the waxing and waning symptoms of IBD, but under those circumstances it... [ more ]
CTBarrister This is discussed in more detail in this thread: https://www.j-pouch.org/topic/...pic-balloon-dilation [ more ]
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J-Pouch ForumsGeneral Discussion
Energy/exhaustion
JO Jacob O.
Former Member Okay good! I get my pouchoscopys done awake I can drive home Remember, every 1-3 years. [ more ]
Jacob O. No I just never got around to it. And I was feeling better so thought I’d be good haha. Plus my surgeon who I’d love to see again and follow up with Dr. Shew, no longer works at the hospital I go to unfortunately. but I definitely will get looked at soon [ more ]
Former Member ❤️
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J-Pouch ForumsHelp! Need advice now!
SIBO
P Pouch2021
Barb J I thought my bathroom problems were caused by fruits and vegetables. In the last year I was so sick and everything I ate seemed to give me grief. I had to figure it out myself. I realized I may have a gluten intolerance. I cut out gluten, drink flax milk instead of dairy milk. I take a powder called "Pure", I bought on Amazon. I take it in the morning mixed with 6 oz. of water a half hour before I eat anything. Within a couple weeks after cutting gluten and taking "Pure", I felt so much... [ more ]
Jfill21 I had the hydrogen breath test a week ago and today got the results—negative for SIBO. I’m not surprised but what I am surprised by is my doctor’s recommendation to try the Mediterranean diet. Seriously? Whole grains? Nuts? Fresh fruits and vegetables? I’ve not had success eating any of that since my take down in 2017. Am I being stubborn thinking my pouch will never tolerate fresh vegetables and nuts? Seems like a lot of trial and mostly error. [ more ]
Barb J I thought I had SIBO years ago and changed my diet. It did help for a while and I thought I had it figured out. A little over a year ago I started to have the same symptoms plus feeling like glass when I pooped. I had diarrhea for nine days. I could not sleep because I was afraid of leakage which I was having. I had to put a panty liner on to help with the leakage. I was grocery shopping and I had gas so bad I could not hold it back. It was long and loud. I was glad I was not in a busy part... [ more ]
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J-Pouch ForumsGeneral Discussion
night time "accidents" in bed?
J JoeJoe
Former Member Great!!! Cannot wait to see new pics of your new work!!!! Do not worry, everything will be okay Everything you are saying sounds normal Almost 7 years past my takedown, and my stoma site is still sunken in, its fun to touch though lol. [ more ]
Chook2 I'm 9 months out and can't remember when it stopped but it did.I tend to wake up even if I'm fast asleep. [ more ]
JoeJoe Fantastic info, greatly appreciated. [ more ]
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J-Pouch ForumsGeneral Discussion
SIMPONI
C capper
girlunky I tried Simponi, and found it very easy to use. My husband did the injections for me. They also had triggered injectors if you don't like managing a needle. As far as I know not oral. I had no side effects - sadly no therapeutic effects either, but am sure it works for some. [ more ]
capper I definitely continue to suffer from these painful flareups. While lately my back has been feeling a lot better, the pain in the bones on my right foot is intense. It feels like a bad bone bruise but nothing is visible. Do any of you suffer from the same issue? [ more ]
Jan Dollar Oh geeze! Sorry to hear about this. We do some camping (both tent and cabin) a couple of times a year. It is always a “crap shoot” in regard to the logistics of weather and restrooms. I try to plan when weather is predictable, but it is not always possible when you have to reserve 6 months in advance. I nearly always take extra loperamide and pain pills on these trips. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
After having a total collectomy for ulcerative colitis, who has then been diagnosed with Chrones?
F FelixGust
capper I was diagnosed with UC in 1992. After 8 tough years, I had a Total Colectomy in 2000. Around 2016 or so, I was diagnosed with Crohn's. I am not certain of this diagnosis but I believe one GI was able to find inflammation in my small intestine. I may also have inflammation in my rectal cuff and chronic Pouchitis. So, not really certain of my situation. [ more ]
FelixGust That is wonderful news and may that long continue. [ more ]
FelixGust Thanks CT barrister. I will definitely pursue having a CT scan. However these symptoms are not unusual for me. When I had ulcerative colitis, any time that I would have a flare up these would be the same symptoms. And then I would have all of the other things like the bleeding, ulceration and fevers as well. So this has a sort of feeling of familiarity which makes me wonder if I might be developing Crohn's. When you say the symptoms could be autoimmune-related, that's exactly what I suspect... [ more ]
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J-Pouch ForumsPouchitis
Antibiotics?
A Almac
Jan Dollar I am with Scott on this. With the fever of 102 and a past history of sepsis, you should not mess around with self treatment. Jan [ more ]
Scott F I’m very supportive of antibiotics for pouchitis, but I’m concerned that your symptoms seem unusual for pouchitis. Maybe calling your doctor could be the next step? [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone got Covid after vaccination?
FM Former Member
Jan Dollar I received my 3rd Covid vaccine yesterday. California quickly conformed to the CDC guidelines. I was beginning to get concerned for my safety with the Delta variant going wild. Jan [ more ]
CTBarrister Also, here is the press release on the order from the Connecticut Governor, Ned Lamont, implementing the CDC recommendations on giving booster shots and pursuant to which I got my booster shot: https://portal.ct.gov/Office-o...ations-on-Additional People are considered moderately to severely immunocompromised if they are/have: Active treatment for solid tumor and hematologic malignancies Receipt of solid-organ transplant and taking immunosuppressive therapy Receipt of CAR-T-cell or... [ more ]
CTBarrister drone3: my Covid vaccination sequence was as follows, all dates are on my vaccination card and they will not give you the booster unless at least 4 weeks have passed from your last shot: Pfizer, part 1- March 20, 2021 Pfizer, Part 2 April 17, 2021 Pfizer, part 3 August 16, 2021 [ more ]
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J-Pouch ForumsPouchitis
Acute pouchitis with loop ileostomy in placed.
WendyyWendyy
Wendyy @Scott F oh I see, I just read over it online and I believe this is what im going through. I appreciate you actually knowing what it could be. I’m doing the 3 step process since I wasn’t doing so good when I had my first surgery so I’m just anxious to get it all over with and see the outcome. -Thanks! [ more ]
Scott F I had a single stage procedure, so I was lucky enough to never experience an external ileostomy. [ more ]
Wendyy @Scott F Well im glad it’ll get better when my pouch is actually working just never heard of that term and my doctors just said I had acute pouchitis when I got the scope done. I’ll look into it thanks! Did u experience it as well? [ more ]
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J-Pouch ForumsGeneral Discussion
Bo Shen
P Pouch2021
CTBarrister My GI doctor who is north of 70 has assured me he is not retiring any time soon. We will see how that assurance goes. Unfortunately much like Dr. Shen left the Cleveland Clinic for the greener pastures at NY-Presb, so did his protégée, my former GI Doctor Oikonmou, leave Yale for the greener pastures of Mount Sinai in NYC in 2015. Since 2015, Dr. O left Mount Sinai for Rush in Chicago: https://doctors.rush.edu/details/17491 I heard a rumor that Mount Sinai, in luring Dr. O away from Yale,... [ more ]
Pouchomarx He assured me he would never leave Cleveland and he did... [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
Dehydrated
B Bubba1028
Bubba1028 I do have pedialight from when my daughter was sick earlier in the week, so I did try that last night. Unfortunately no the urgent care doesn’t have IV fluids. I did still go because I had to get my covid test for my surgery on Thursday. They did say if I’m feeling like this at the end of the day today, I should go to the ER for fluids. I’m going on day 2 feeling like this, so I think I’m just going to go. My heart rate is now up to 140 resting rate and my BP is low. No headache though which... [ more ]
Scott F It sounds like you need fluid PDQ. Do you know if your Urgent Care has IV capability? If not, could you call them to find out? I know how hateful the ER is, but it sounds like you’re on your way to bigger problems if you don’t handle this one. There are better rehydration solutions than Gatorade, though Gatorade tastes better. Pedialyte does the job pretty well in a pinch. [ more ]
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J-Pouch ForumsGeneral Discussion
Fasting Research
temotytemoty
asdfqwer What you are saying about a slowed metabolism is what occurs with a traditional reduced calorie diet not so mich with fasting, according to Dr. Jason Fung. Fasting actually maintains a higher level of metabolism in the long term [ more ]
asdfqwer I came here toake a thread about IF but saw yours. Just wanted to report to everyone Ive lost about 35lbs in the last 8-9 months fasting. More importantly I have not needed antibiotics for 3 1/2 months and counting. Before I was rotating antibiotics every 4 to 6 weeks. I do believe there really is sonething to fasting. We will see if it has diminished benefits in due time.. Even the 6hr feeding window method works well ajd I sometimes throw in a 30+hr fast once a week ideally. I would like... [ more ]
skn69 Fasting is a difficult question. In the short term it can offer many benefits and for years I fasted regularly for 24-72hrs. As a teenager I had to fast to be able to go to school so from Sunday night until Friday afternoon I basically lived off of fluids. Any time I had to go out I would fast up to 24hrs ahead of time. Once I had my k pouch done I could and did eat normally...my body did not appreciate that. It was not used to the intake and calories. I started eating according to Fit for... [ more ]
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J-Pouch ForumsGeneral Discussion
jpouchers and the belly fat 8 weeks out from take down?
J JoeJoe
MChong 60F 3 year post takedown. Left side and noticeably larger after eating. In fact my 3yr grandneice asked me if I was pregnant yesterday. It takes bowel movements / fasting for my abdomen to flatten. I am not sure if it is normal to eat in order to push the food from the abdomen to the pouch [ more ]
JoeJoe Thank you so much. I have the exact same thing, on the left side. I appreciate the info! [ more ]
Winterberry I had lumpy belly for months after my takedown, and I went into surgery underweight! My stomach was lopsided, and the lumpy bit was more pronounced on my left side, as if I had a small balloon inside at that spot. I asked my visiting ostomy nurse if my stomach would be permanently lopsided and she said yes, but she was wrong. The swelling eventually went down and I’m not lopsided anymore. I think it was the temporary effect of a major surgery and the moving, cutting, manipulating of the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouchitis/ cuffitis/ pain LR quad / numerous BM day and especially night spite bland and pretty much liquid diet
FM Former Member
Susan L I experienced horrible pain in my lower right abdomen after takedown (5/20). It took 7 months to figure out I wasn't passing gas. Sounds simple once you know it! I had several other issues to get through. My pelvic floor pt therapist helped figure out alot of the issues. I used a tens machine which helped with pain. I had to invert my body for gravity to get the gas to come out. I'm hoping that sharing this might help! My surgeon also could not give me pain meds. She suggested going to my... [ more ]
Former Member Thank you for the suggestions! I had forgotten about marshmallows - and who doesn't like marshmallows!! My surgeon / GI doctor also called in Zinc oxide, mesalamine. I started Cipro/Flagyl 2 days ago. So, I'm crossing my fingers!!! [ more ]
F'ing Fistula Marshmallows! Really help me to thicken and slow my output when loperamide isn't working. Re. the pain, I stick heat pads to my body to help sometimes 😂 (like the hand warmer ones etc).. and I always use comfeel barrier cream when my output is often/liquid as it can make me very sore ... Its not much I'm afraid, but good luck 🙃... Hopefully the antibiotics will start working soon and you'll get some relief 🤞🤞 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchoscopy prep
N Nara
CTBarrister Willoughby's is roasting their coffee in house and to my taste buds it's a very different taste, especially the dark roasts. A lot of people do like their coffee, including one of my coworkers who is a big fan, but I generally go elsewhere. I will say that Willoughby's corn muffins are GREAT, and sometimes I stop there and just buy their corn muffin and get the coffee elsewhere. They probably don't appreciate that, but they take my muffin money anyway LOL. BTW- I also usually get pizza after... [ more ]
CTB23 CTBarrister Yes, unfortunately Modern is dining in, but we got there just before 12, so it wasn’t too busy and the service was quick. The Wlloughby’s we go to is at the intersection of Grove and Church. My husband is more of a coffee person than I am and compares theirs to one of Starbucks select coffees that you can only get in certain shops, such as New York City. [ more ]
Sara14 ❤️
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J-Pouch ForumsK-Pouch Korner
best devrom price is 11.55$ if 12+
J jan15
jan15 just did a quick search and devrom site once again had the least expensive site. i stopped using them during covid but will be glad to get back on the train. ms e--too bad you can't get your husband to do an ad for them!! loved your comment. jan [ more ]
Ms E I just joined this group and found your question. I have searched repeatedly for a better price but the best price is still at www.devrom.com . I always buy 12 at a time for the discount. It really works for me! My husband can tell within one day if I have run out! [ more ]
Kim S ❤️
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J-Pouch ForumsK-Pouch Korner
Ovaries
M maisymoo
maisymoo If it is the case that it needs a repair (I just read that surgical mesh is sometimes used to repair plus the success is pretty low) I think it would be futile i had surgical mesh removed some years ago after it caught in my tube holes when removing the catheter it had made its way through into my pouch but still attached partly to my flesh so I was pulling my insides out it was a nightmare I'm lucky to have gotten this far I guess. It might be time for removal especially as there is no kp... [ more ]
Kim S Yes, they can be diagnosed by a CT scan. The lack of experienced K pouch surgeons is a problem in the USA too. [ more ]
maisymoo Thank you Kim I didn't consider a hernia I will mention this to my gp can it be seen on a scan? My new surgeon knows nothing about the kp I'm hoping she can repair it if needs be infact there is no kp surgeon in Scotland there was one in Edinburgh but my previous surgeon says she got no replies from him about another patient. It's good to have input instead of me guessing. Maisy [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Endometrial Ablation
W winnie
Portia Hi @winnie ! I underwent this procedure 12 years ago. At that time my pouch was also 18 years old like yours. The ablation was performed at a major hospital in Boston. The doctor performing the ablation was familiar with j-pouches, touched base with the surgeon who did my j-pouch surgery (out of an abundance of caution which made me feel better) and was reassuring that the ablation shouldn’t affect my pouch or its function. (You could certainly ask your gynecologist to touch base with... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Removal?
J Jrt1352
SteveG I experienced no side effects, but it also didn't help me. The same as with any other of the modern meds for IBD. The only thing that really improves my chronic inflammation is Cipro & Flagyl. I reduce to taking both once a day at late evening after 2 or 3 days of therapy, when my digestion is better and calmer again. [ more ]
sudie I have just had my second infusion no apparent effects feel good my doctor mentioned about three months before I see results have heard of some excellent reports will give a good go nothing to lose one step at a time is my moto [ more ]
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J-Pouch ForumsGeneral Discussion
GI with pouch experience in Boston area
J jpouchseeker
Portia Hi @jpouchseeker, I’m so sorry to hear that you’re dealing with these miserable symptoms. Since March I’ve been in the care of the Crohn’s and Colitis Center at MGH Boston. They’re experienced with j-pouch patients. My gastroenterologist is Dr. Bharati Kochar—she’s accepting new patients. I’m really glad to be working with her after being without a gastroenterologist for 3 years after the surgeon who followed me retired. You’ll need a referral. Good luck—I hope you can get answers and relief... [ more ]
Scott F Perhaps the referring doctor can intercede and get them to give you an earlier appointment with the motility specialist. That has sometimes worked for me when circumstances warranted it. Also, perhaps your surgeon can recommend a GI. I hope it all gets resolved without too much delay. [ more ]
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J-Pouch ForumsGeneral Discussion
Endometriosis Removal
M mjhdpn
Kangaroo I have endometriosis as well. It was found during my colectomy. Though the cysts were removed during that surgery, more cysts developed. My colorectal surgeon said endometriosis removal is too risky for my j pouch. I'm not on any hormones to suppress ovulation because they cause me severe depression, so I depend on Percocet every month. I'm also curious about other women's experiences. [ more ]
Pouch2021 Hi TIA, Please update this thread if you can as I’m definitely interested in the advice you receive. Was dx with endo during pouch formation (just thought hormones were changing as I aged causing more painful periods in my 30s and dealt with it). Now I suppress ovulation with meds as I’ve had tons of surgical complications and pouch issues since takedown and trying to eliminate any contribution of endo. My gynecologist told me any further pelvic surgery would be very complex and risk the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pseudo Obstruction
C CPryor
skn69 Wow, interesting...I know that gluten is not my best buddy and liquid dairy (milk, lattées, milkshakes etc) can be nightmares but neither were ever at the root of my blockages. The gallbladder is a very likely culprit for both pain & gas. There could be gravel or stones in there blocking things up and causing problems. Good luck and please keep us posted on the results of the tests. Sharon [ more ]
claire So glad you got to the bottom of this! Amazing news ! [ more ]
CPryor ❤️
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J-Pouch ForumsGeneral Discussion
Longevity of J-Pouch
RC Russell Camacho
Mrs P ❤️
DoughBoyInPHL78 im 43 years old and i received my j-pouch half my life ago +. 20 years ago. my anniversary of my jpouch surgery is october 15th 2021. i had familial polyposis. a disease that usually runs hereditarily in the family and is inherited from a parent from which they inherited the illness from their parent. in my case, my father passed on the mutation/gene to me as its an inherited illness received when born. i had my first colonoscopy and egd 22-23 years ago at it was discovered then what i... [ more ]
Michael me: 58. pouch: 35 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Should I throw in the Pouch???
ValerieKValerieK
TE Marie I was diverted to an end ileostomy for 6 months before I had my j-pouch removed. If you are going to get diverted please don't get a loop. I had the loop during my j-pouch surgeries and it was horrible. That is why I didn't want to go to an ileostomy and held onto my j-pouch too long. An end ileo is night and day different than and temp/loop one. You will not have to empty the bag 12-15 times a day and will spend much less time consumed by your bathroom trips. There's some sexy lace... [ more ]
Rhen1075 I don’t know what it’s like to have pouchitis for all that long, but I’ll never forget the agony of it. I didn’t respond all that well to the antibiotics and as soon as I would go off of them, my pouchitis would be worse than ever. I hated taking the antibiotics. My gastroenterologist prescribed me a certain probiotic ( I forget the name of it), but it worked better than the antibiotics and without the terrible backlash when I went off of them. The problem for me with those probiotics was... [ more ]
Elena Andreou ❤️
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J-Pouch ForumsHelp! Need advice now!
Roller coaster of diahrrea/constipation
K Kimmieg56
Scott F You could really use a diagnosis. Does your gastroenterologist have an opinion? In the meantime, sometimes this pattern comes from overdoing symptomatic treatment, and cycling between overtreated and undertreated. Are you using any bowel slowers (usually Lomotil or Imodium)? If so how much do you take, and when? [ more ]
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J-Pouch ForumsGeneral Discussion
Is this pouch/GI Related?
B Bubba1028
Bubba1028 Oh good to know. So prob nothing to worry about! [ more ]
Jan Dollar If they scanned for an obstruction, an ovarian cyst should show too. That was how they found mine (by looking for an obstruction). Jan [ more ]
Bubba1028 Humm good point. My scans keep coming back normal from an obstruction standpoint. I just feel plain old silly for calling another doctor and saying that I am having pain again. I have had ovarian cysts in the past but that was way back in college and I’m in my 40s now. I’m at the point where I’m embarrassed to even tell my husband I have another doctors appointment. It’s like- yea, it’s just pointless. I’ll just deal for now… thanks for the advice though. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
RV fistula with grotesque swelling?
StarryNightStarryNight
DanniO Then 1075 I’m so sorry that’s awful 😢 My fistula drains waste from my Jpouch to the vagina all the time. Sometimes it’s more drainage than others but I use flat cotton pads rolled up to absorb the fluid… It’s not swelling any more but it’s always there. I have investigated having it repaired but to be done properly it’s another 3 part Jpouch surgery with a high failure rate over 70%. My Jpouch functions well and I’m able to live my life and stay healthy and fit so I just focus on what I’m... [ more ]
Rhen1075 I had a doctor prescribe Bactrim for the swelling of the labia. It worked wonders for that problem, which was one of the most painful issues. That was a couple of years ago. Since then I discovered a pouch to vagina fistula. Before that, I had some bartholin cysts and also abscesses in female regions, I assume from leakage of of fluids from the j-pouch. It gets itchy and then the abscesses get bigger. Sometimes they drain either puss and or blood. It’s pretty awful, but somehow you get... [ more ]
DanniO I’m pretty sure the bartholin cysts were at the root of my RV fistula as well. Do you have Crohns or Ulcerative Colitis? I’ve got a jpouch but had UC. I’ve been offered biologic for fistula but I’m not a huge fan of taking meds essential systemic. I really hope you get some relief. I’m so sorry you’ve had to get a seaton 😢 it’s added insult to injury with this IBD 💜💜💜 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Walking and leakage
AngiebAngieb
SteveG Most important is to improve stool consistency. If fiber can do that for you - why not. When walking around, a short relaxing of the sphincter or an increased load of the pelvic floor (e.g. when coughing or sneezing) can lead to leakage if the output is too liquid, even more with bloating. But I think that can also be a problem for people with a colon if they have severe diarrhea. [ more ]
Scott F Fiber is inexpensive, easy to try, and close to completely harmless if used according to the directions. Why not give it a try and see if it works for *you*? [ more ]
CTBarrister The problem I have is leakage when I cough. I have had this happen a few times. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Incontinence
AngiebAngieb
SteveG Hello Angie, currently I use a rental device for pelvic floor exercises by electo-stimulation. A probe with electrodes is inserted into the anus. It should build up the inner sphincter muscles that are important for passive tightness, i.e. when you sleep. Basically it is similar to conventional pelvic floor exercises, where you are told to imagine pulling out a nail from a board or something like that. But you have a electric stimulation on the one hand and a visual feedback of sphincter... [ more ]
Angieb Thank you Steve ! That information was greatly appreciate it. If you dont mind what type of pelvic floor you do? [ more ]
Former Member ❤️
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J-Pouch ForumsGeneral Discussion
I'm Back about Back
C capper
capper Well, my bone scan, x-rays, and bloodwork all came back. It seems that the bone scan and x-rays didn't detect any problems. The only thing that turned up in my bloodwork was that my Uric Acid level was above the normal range. The top of the normal range is 420 and mine was 449. As a result, the doctor I was referred to thinks that it is possible I could have Gout. However, I don't think my symptoms are akin to Gout. At least I don't think most of them are. So he suggested that I follow up... [ more ]
Jan Dollar Capper, that sounds like you got a thorough work up. A really good MD, perhaps an osteopath, could be astute enough to diagnose. Being board certified is not the be all and end all. All the labs and x-rays will not confirm or rule out enteropathic arthritis, but they can rule out other causes of your pain. My enthesitis is particularly random. This past week I developed constant pain in my ribs (sort of like a mild kick by a mule). It had been years since this happened. But, yeah, part of... [ more ]
Former Member 15 vials of blood??!?!?! DAMN!!! Okay, let me know how everything goes. Sorry you are suffering hon [ more ]
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J-Pouch ForumsHelp! Need advice now!
blood platelets
L La-Te-Da
Jan Dollar I have low platelets, but not seriously low like you. This is not due to bleeding, but you are at risk of hemorrhage. Here is some info: https://www.nhlbi.nih.gov/heal...ics/thrombocytopenia You will need more tests done and possibly see a hematologist. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Eye sight with UC
S Scott21
CTBarrister Around 10 years ago, while still in my 40s, I was diagnosed with Central Serous Retinopathy, CSR, the cause of which is unknown, but may be tied to autoimmune disorder. It's a condition in which fluid builds up near the retina: https://www.medicalnewstoday.com/articles/320606 What characterizes CSR is a sudden vision loss. I recall what happened pretty vividly. I went into a restaurant one day, asked for a menu, and I could not read it. It was blurry. It was totally sudden and confusing to... [ more ]
Portia @Scott21, it may be unrelated, but seeing a doctor about any changes in vision is always wise as you’re doing. In my case I was encouraged to see an ophthalmologist when I had active UC because the prednisone I was on at the time is associated with eye problems including increased ocular pressure which I did indeed develop and required treatment with prescription medication to prevent permanent damage to the optic nerve. So it didn’t affect my vision but did affect the health of my eyes, and... [ more ]
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J-Pouch ForumsGeneral Discussion
Employment
L La-Te-Da
Jaypea I am a registered nurse (pediatric critical care) and a flight attendant. I have found what works and definitely what does not. I have drastically cut down on gluten and that has made an immense difference. High protein seems to keep my pouch happy. Everyone and their pouches are different. [ more ]
Portia For 25 of my 30 years with a J pouch I worked full time as a road warrior, meaning frequent business trips with air travel, and on my feet during presentations and trainings for clients. What worked for me was sticking with food I knew I could tolerate, eating lightly, avoiding alcohol and desserts, taking Imodium and Metamucil (helping with control and consistency), and building in breaks. 5 years ago I made a career shift and now work for an employer not multiple clients and that job is 30... [ more ]
Kmiller I work from home. Used to go into the office but after my takedown went straight from leave to wfh due to covid. Now people are going back to office but my department has been approved for permanent work from home if we want, which I do. Generally when I am out and about I find my pouch behaves, but a few weeks ago I did go into the office for an all day workshop. That day I was having a bad pouch day and hit the restroom about 7 times. Not a norm for me but still glad I can generally be... [ more ]
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J-Pouch ForumsPouchitis
not sure what to do
L La-Te-Da
Scott F One thing to do is consider any changes that you have made in your diet, even the ones intended to help. For example, adding yogurt to your diet could make things worse, especially if your lactose tolerance is reduced as a result of pouchitis symptoms. [ more ]
SteveG It's usually a good idea to follow one's gut (not one's brain) for choosing foods. So don't worry about the steak. I do not follow a specific diet. I don't eat pork and only little red meat, so mainly chicken and sometimes fish in the non-vegetarian corner. I reduced alcohol during the last months. I never drank a lot, but now it's hardly any. And I try to have bread only for one meal per day, that's easy if I have an oatmeal with yoghurt and fruits in the morning. But till now chronic... [ more ]
La-Te-Da My pouchitis got better and I have ordered Viso but have not received it yet. Just been eating yogurt to try and help. I am going to call my doctor in the AM. I have never been on Cipro and this is my full first time of using Flagyl. My takedown was in 2015. I have used Flagyl maybe twice in the past 6 years but is was for a couple days and then I was fine. This time is definitely different and very scary. Do you follow a specific diet? I was feeling so good today and that it why I was brave... [ more ]
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J-Pouch ForumsFAP Forum
I beg you to help me. I burn a lot
arash.charash.ch
Caty Besides what others above have recommended, have you considered purchasing a portable travel bidet to soothe the burning and help keep the area clean when at home or when using restrooms during the day? They sell them on Amazon. Caty [ more ]
JJinLA Here is what works for me: 1. I take Imodium to slow down my gut. 2. I drink cultured buttermilk to change the ph and restore normal flora 3. I use a salve called Calmoseptine. 4. I use Metamucil powder mixed in milk or ice cream to bulk up my stool. 5. I do not eat fried foods very often. Keep a food diary. Some foods will trigger you to have liquid stools. For example, I do not eat blueberries. hope this helps [ more ]
Former Member Assalamualaikum Warahmatullahi Wabarakatuh Diaper rash cream: Convatec skin barrier cream is great. Also: Lidocaine topical cream numbs the area, that works! [ more ]
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J-Pouch ForumsFAP Forum
Has anyone experienced small bowel obstruction post op?
Jpouch1064Jpouch1064
JJinLA I agree with Jpouch1064. I did have a SBO like decades after my one stage colectomy with Jpouch. I had to adjust dosage of Metamucil and Imodium to an as needed basis. Our bodies change as we age. [ more ]
skn69 I've had a k pouch for 35+yrs and never expereinced a bowel blockage, occlusion or ileus before 2007. I had had over 20 major abdominal surgeries in that time. In 2007 I had my 1st ileus post-op (your intestine seems to not want to wake up and you can keep nothing down)...since then I have had numerous incidents with blocages and have even had surgery for it. (a loop of small bowel was imprisioned by adhesions)... I think that our guts can slow down over the years, they can get filled with... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis inflammation
P poppalee
SteveG I agree that 8...10 BM is an increased rate, but I had to deal with that for many years myself with chronic pouchitis and it should be no problem if you drink enough. If you say "stage three kidney disease", is this an acute / singular eGFR value for kidney function when you needed to go to hospital? I had some episodes with partial kidney failure in the past 17 years when I had severe diarrhea and circulatory problems. But that was only until my health got better with infusions and... [ more ]
Doug K Dr. Milsom was top notch - heard he retired. Have you tried bowel slowing medicines Imodium or Lomotil? That could help you retain the water. Going 8/10s is not such an alarming rate to cause such dehydration. Some on this site go 12+ and I have not heard a ton of kidney problems. Please let me know if you have tried bowel slowing agents. I think it could really help, but I would bet that you would have tried them already. [ more ]
poppalee Thank you for the replies. I have 8/10 bm per day sometimes very small because I sit down to pee and there is always some stool. My doctors are at Weill Cornell and my surgery was by Dr Jeffrey Milsom who is supposed to be one of the best. I have been on Remicade, Humira and some other stuff prior to pouch. After pouch I was on antibiotics for a while but then seemed to be okay until recent episode. While in the hospital they did a pouchoscopy and found inflammation so my doctor has obtained... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Solid stool/bright red blood/38 weeks pregnant
C clouwho2
clouwho2 Thank you for responding tonight! I’ve decided to just talk to my dr tomorrow. It happened multiple times today, but all around the same time. My surgeon told me I would never have hemorrhoids issues (unlike most pouchers) because he removed all of the rectum, all the way down to the anus. So whatever this is it’s not that. Hoping it clears on its own! I already had an appt with my GI in 10 days, but if anything more concerning happens I will contact them. I will try to remember to update... [ more ]
Scott F It’s been about 4 hours, so presumably you made a decision. One episode of blood is mostly a signal to pay attention. My first guess would be hemorrhoids. Since you also had an unusual experience of solid stool, make sure you stay well hydrated. Good luck & congratulations! [ more ]
Bubba1028 It could be hemmeroids. I know I had them (and most women do) during their pregnancy. I actually didn’t know I had them until one of my exams when my doc pointed it out, so you may even know that you have them. Bright red blood usually indicates hemis or proctitis, but if you’re really concerned you can def call your doc. I bet they’ll prob just go through with everything as scheduled and have you follow up with your gastro a few days after. Any other symptoms? congrats on the baby!! Good... [ more ]
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