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J-Pouch ForumsGeneral Discussion
buspar
S scallop
scallop I had mine done in 1998. My docs are recommending I excise. Seriously considering it. This j-pouch is such a bad solution to the problem. Hope you get some help. [ more ]
BarbieG I get very lightheaded on it. Doc says there’s no substitute. I’m wondering if I low blood sugar? Just got a meter & will start testing tomorrow. I have mild high blood pressure. I am at my wits end to try to feel good after surgery. It’s been since 1984! Grant it, I never kept to a diet at first. Now it’s the most important thing in my life! I had Ceasar salad last night, wrong decision! I used to be a vegetarian! Potatoes are the few veggies can eat. [ more ]
DJJ2019 Benzos help with anxiety and gave me no side effects on the pouch. I ended up not taking the Buspar. At this point I think anything that affects serotonin will cause me pouch issues. I'll take Xanax as needed if I get in a bad spot. If it is real bad then I guess I'll go back on Wellbutrin. That seems to be the only long term medicine that does not affect serotonin. [ more ]
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J-Pouch ForumsGeneral Discussion
weight loss
tftf
CTBarrister I really wish I had the same issues. I am struggling to take weight off. I am 5'5" and male and should be 170 pounds accounting for my body type but instead I am over 200. It's a real struggle. My blood pressure has crept up, knee issues have developed (osteoarthritis not helped by the extra weight), sleep apnea and other issues have developed, and some ED issues have arisen I didn't previously have when my weight was lower. This is all not good. It's metabolism and not the J pouch, although... [ more ]
Chook2 I went out for dinner tonight for a family birthday and two others had either a jpouch or ileostomy bag and both said they can't gain weight and the one with the jpouch was very thin and in and out of hospital .but my weight has climbed so fast I had to intermittent fast for 16/8hours and stop drinking and start doing 10000steps a day just to slow it down.I still eat too much but only seem to see slim people with these conditions.I do prefer being overweight to slim but would rather be in... [ more ]
PouchLogic Find whatever you can manage with the highest calories. Protein/calorie shakes can be helpful. I also try to minimize activity and anything that is going to burn calories. Take calories anytime you can even if it's a small amount. I also use cannabis to help encourage me to eat as I struggle with even wanting to eat. I have been around 100lbs before but I should be around 180lbs, currently 165lbs and trying to gain back 15 more. Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Buspar
D DJJ2019
Pouchomarx i started on 5mg for a month now on 10mg. it does ok for my anxiety but not as good as the xanax i was on for like 10 years. I took as needed not always. but no doctor will even prescribe it any more cuz its addictive, so tired of this bullshit we have to deal with , no pain meds, no xanax. only thing i dont like is it makes my head feel dizzy for about an hour after taking it. [ more ]
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J-Pouch ForumsK-Pouch Korner
Worst things about your kock pouch?
R readann
readann Thank you! I have done a lot of research, read every study available, and obviously have spoke to my surgeon numerous times. I’ve already come across your blog in the past. for me, I’ve already decided I want one, but it is up to the results of a recent test whether my GI and surgeon will agree my body can handle it. There is no research or literature outlining people with my condition having a kock pouch. It will be a crapshoot, so that’s why there is the debate. Depending on the results of... [ more ]
kaydbird Its import to ask lots of questions. I did a lot of research on the k-pouch before I got one, including coming to this site and asking questions, it is a big decision. I have never had to have a pouch revision. That is to say, I had a j-pouch previously that failed due to a rectovaginal fistula. Now I have a k-pouch, it has always worked fine. I have been to the ER often for bowel obstructions which is always a hazard of having several abdominal surgeries and developing adhesions (scar... [ more ]
jan15 greatly respect you for understanding the pros/cons before hand. nobody can better explain how k pouch works than those of us who have one! some good--no great--things for me: eliminated excoriating pain w malfunctioning j pouch and various ancillary problems, including weekly blockages. what/who is your hospital/doctor? where located? I'm in Boston, where no doctor deals w k pouch. my pouch created at Cleveland clinic, dr. Dietz, who is fantastic. now go to NYC for routine exams and minor... [ more ]
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J-Pouch ForumsGeneral Discussion
Gastroscopy
C capper
capper Thanks for the all the feedback to my post. LovelyCarrot made a great point about logistics and maybe I should question my GI about this procedure. I thought about that for sure. However, considering I am on my 4th biologic in the past 5-6 years (Humira, Remicade, Entyvio, & now Simponi), and since I am still having my share of issues, I should probably keep my mouth shut and do what they say! I suppose it's a small price to pay considering what I have had to live with over the past 22... [ more ]
CTBarrister You need to distinguish between conscious sedation, in which you are NOT "put under", and anesthesia (usually propofol) in which you are. I believe, although I am not certain, that both are options for this procedure - as they are for a pouchoscopy. I uniformly refuse propofol, which will be pushed on you, because it's retail cost is prohibitively expensive, and for other reasons. You have a say in what is put in your body and it is up to you to voice that say. Many patients meekly accept,... [ more ]
Jaypea Just a legal note here. You are legally impaired for 24 hours after sedation or anaesthesia. Please do not drive unless you are 24 hour post sedation cocktail. [ more ]
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J-Pouch ForumsGeneral Discussion
Scar hurts
A Andreita
New577 I had my stoma in the core area to the right of my bellybutton. That area hurt for months afterwards. now 10 months later, like pouchlogic, it does not hurt but it is still uncomfortable when coughing or sneezing. I am finally moving around a bit more which I think helps the situation. I agree you should ask the surgeon his/her thoughts but I think with an open procedure it will ache longer than a lap procedure. [ more ]
PouchLogic Not a female and I have a high pain tolerance but I don't think you should be having pain still. It definitely takes time for it to feel normal if that can really be said. Sometimes my stoma scar feels tight or uncomfortable but I wouldn't say pain. I also still have discomfort internally but I also wouldn't say it's directly the scar tissue being painful. I hope this helps or that someone else can help. I also used an ultrasound machine to help break down my scar tissue. They are available... [ more ]
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J-Pouch ForumsGeneral Discussion
Bidets!
M merganser22
BarbieG I was always hesitant of the kind that are part of the toilet seat until I got one, BioBidet. Love it but it’s a pain to keep clean. Next one will be the real deal. I recently looked up the one I bought in 2019 and it has doubled in price! [ more ]
Bubba1028 I got a portable one and installed it for right after my takedown- ready to go when I got home and so glad I did. I’m numbed when I go to work and don’t have one. Lol. 💩 [ more ]
PouchLogic ❤️
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J-Pouch ForumsGeneral Discussion
Need surgeon recommendation
K Kathleen1943
Kathleen1943 thank you for responding. As it happens, I have an appointment with a different doctor at Cleveland Clinic next week. Perhaps I can talk my way into Dr. Hull's practice once I am in the door [ more ]
AMB Check out Tracy Hull at Cleveland Clinic https://my.clevelandclinic.org/staff/704-tracy-hull I did not use her but she was recommended by another surgeon who had been at Cleveland. I have seen her lecture and really liked her. There's some recent research that indicates women have better outcomes with female surgeons. Who knows. I ended up in NYC, and happy with my choice, but chose only for personal travel and family convenience. Otherwise would have used Dr. hull. I have been to Cleveland... [ more ]
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J-Pouch ForumsGeneral Discussion
Improvement timing of Takedown
J Jenncp
CTBarrister You might need to take anti-spasmodics for a while. After surgery motility can stay hyper active for many months. If you notice that there is a particular high frequency of bowel movements after eating meals- if they are coming in machine gun bursts after the meal- the issue is motility and the solution is anti spasmodic pill (Bentyl or Levsin) 45 minutes before meals. If the BMs are consistently spaced out through the day and not coming in rapid fire bursts after eating, the best you can do... [ more ]
Jenncp Thank you very much everyone for your replies. It is a small corner of the world that few really understand! It’s nice to have somewhere to go and ask questions that people get! I feel better just knowing you all have been down this exact road and I am going right way!!!! It’s tough, but you all have been through so much… I know I can get there too!!! [ more ]
Scott F If the fiber supplement you’re using isn’t helping then you might want to try a different one. I get good results from psyllium fiber (Metamucil or Konsyl). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch and the rectal cuff
S Scott21
Former Member ❤️
Andreita Hi I just wanna chime in to say that Dr Remzi removed my entire rectal cuff and did the hand sewn anastomosis. I got my life back (had many problems before) [ more ]
AMB I consulted with both Remzi and a Kiran before my surgery. K-Pouch has been my back-up plan, which is why, among other reasons, I elected to have Dr. Kiran perform my J-Pouch surgery and would use him again should the pouch fail to meet expectations. Because I had high grade dysplasia the cuff was removed in the first stage procedure which has given me peace of mind but probably added to the challenges of adjusting these past 9 months since stage 2. For either K-pouch, or advancement, I'd... [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling constantly tired
LinzalishaLinzalisha
SadieM1210 Hi @Linzalisha , hope you are doing well. I completely understand what you are feeling. I constantly find myself dragging. So much to do. Sometimes I get so cranky because I'm so tired and exhausted. Few things and some have suggested them to you. Depression can be a big factor of low energy and not feeling like doing anything. Low iron levels so iron infusions. Dehydration was a big one for me. What i found was Vitamin Water worked best for me. Way better than Gatorade, that has too much... [ more ]
Paul Vincent I unfortunately am in the same boat. I had my pouch done in 2007 and really was never ok... Pouchitis started immediately and for years. Then was diagnosed with Crohn's and had to do dilations at least twice a year as I was getting multiple strictures. Ran the gamut with Remicade, Stelara, Humera, Mercaptopurine, etc.... Got kidney cancer last year and during surgery they punctured my small intestine which shut down my digestive system for 13 days. Now I have a 10-inch closure going into my... [ more ]
Mary O I wake up tired every single day and have for years. I don't have problems keeping weight on, I'm the exact opposite. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch
J Jane00
Jane00 Thank you again Doug [ more ]
Doug K Best of luck with the surgery - you are in a tough spot, but you have come this far, and closing the stoma in some crazy way is the best way to tell. If you have regular Pouchitis - they may put you on a biological medicine. I hope the Pouchitis goes away for you. It does indeed for most people. Hang in there. The final surgery is the least difficult for most people. Please let us know how you did. Best Doug [ more ]
Jane00 Thank you! [ more ]
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J-Pouch ForumsGeneral Discussion
Digestive reaction after aesthetic Botox/fillers?
L Leeloo
Leeloo Thank you Jaypea and Scott F for the information! ♥️♥️ [ more ]
Scott F I looked at the full list of Botox side effects and didn’t see anything digestive included. It can get pretty scary if it spreads through the body instead of staying where it’s injected, but breathing is the big one. [ more ]
Leeloo Yes, I have a lot of scar tissue and have had blockages even non- Botox related. So it’s hard to say for certain. That’s why I asked, I was curious if others had experienced this or if it was only me. Could just be coincidence. Does not sound like anyone else here has experienced this so I do not have enough evidence to go on here unfortunately. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pelvic Floor Therapist in NYC
I Ibdmom
Chook2 On YouTube I was recommended ,Connect Physical Therapy.the lady is very funny and recommends spreading your knees far apart to empty.Ive been trying this and it works so far. One of her videos is called How to empty your bladder and bowls for better sex for men. The comments are very funny. It's for people with colons but might work. [ more ]
Ibdmom Mount Sinai is actually where she goes. Since she is 14, she sees the pediatric g.i. - Dr. Dubinsky. However, Dr. Kayal is my g.i. doctor. She is great- very knowledgeable as well as kind and caring. I ended up getting an appointment at the place recommended which is now Maiden Lane Medical. Today was evaluation appointment- so I will see how it goes... [ more ]
Former Member Mount Sinai IBD Center has a lot of resources for IBD patients, and your daughter might get an appointment with a GI that specializes on j-pouch there, who can refer her to a pelvic floor therapist that they work with. This GI https://www.mountsinai.org/profiles/maia-kayal there has been publishing a lot of articles on j-pouch recently, obviously focusing her research on j-pouch. You can find her publication list here, look at the titles of her publications: https://plu.mx/mtsinai/u/mkayal/... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain when straining
E EoinMaxwell
Scott F Anticoagulants don’t prevent hemorrhoids, though they might reduce the likelihood of a thrombosed hemorrhoid. Straining at stool can sure cause hemorrhoids. [ more ]
EoinMaxwell I’m on pretty heavy anti coagulants for another illness so I’m not sure I could develop a hemeroid could I?, however that’s just my assumption as for a fissure, I don’t think it’s this, it isn’t the type of pain associated with a cut Now that you say that, I have been finding it a bit harder to pass stools (especially on days it’s particularly bad) this also may have started just before the pain did but I’m not sure tbh [ more ]
Scott F You might have a small anal fissure or an inconveniently located hemorrhoid. Did you have any episodes of difficult-to-pass stool just before this pain started? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible stricture?
LH Liz H.2013
Scott F Mag Citrate won’t clear most blockages, and blockages don’t make it difficult to empty a full pouch. A stricture is a possibility, and I wouldn’t suggest pouring Mag Citrate in behind it. Increasing your fluids might help. If you are inclined to self-diagnose you could possibly check the pouch outlet by *gently* inserting a well-lubricated, preferably gloved finger (the anastomosis may be out of reach, though). Some folks who have trouble emptying use a catheter to flush out the pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
.
N newpoucher37
Scott F It sounds like your body is telling you that it can’t (yet) tolerate your current diet. Be gentle and patient with yourself. [ more ]
Doug K Bloating is very normal the first weeks if not months. It takes a while for things to settle down. Give it time - don’t worry. [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery waiting times UK
FF F'ing Fistula
cbear I wasn’t an urgent case but it took almost 2 years to finally get my surgery on Wednesday i’m in East Yorks. I hope you get a date through soon xx [ more ]
F'ing Fistula Thank you both for your replies, it's appreciated. I know it was a bit of a silly question really 🤦, and that there's no way to predict waiting times under normal circumstances, let alone with the pressure the NHS is still under after Covid. I think I was just curious about other people's experiences lately, so thank you both. Trojan, I hope you hear news soon with a date for your next op, and obviously good luck for when it comes round 😊. I don't know what your situation is, but it sounds... [ more ]
Trojan Hi there, I’m in the South West. I had an emergency loop ileostomy in Sept and waited 5 months just for a follow up outpatients. Now waiting for a reversal or pouch revision and assuming 6 months most likely. My surgeon is always overly optimistic so I double what he says. Like Scott says, defnitely follow up (with a call to your Doc’s secretary), at the date you were told, just to make sure they haven’t forgotten about you. I don’t think that counts as hassling them, just being reasonable. [ more ]
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J-Pouch ForumsGeneral Discussion
Constantly thirsty
B Bubba1028
Bubba1028 I don’t think I need IV fluids per say but something has to change. I’m literally waking up from sleep at 4am like I can’t swallow bc it’s so dry and I’m awake for the next few hours. I’ll try the drip drip… If it gets bad I won’t hesitate to call the doc. I have had to go to the ER bc of dehydration. My salt and potassium levels were super low. They gave me supplements and gave me two bags of fluids and I was good to go. [ more ]
LovelyCarrot One more suggestion- see if your GI will get you in for IV fluids, maybe for several sessions over a few days, and see if that helps your body get over the borderline chronic dehydration that you’re currently in. Sometimes you just can’t absorb enough drink to pull yourself out of the dehydration spiral. [ more ]
LovelyCarrot +1 for liquid IV- it’s saved me on a few dehydration incidents. Your situation sounds more persistent, but with a pouch and no colon it’s pretty easy to get dehydrated quickly. Several times I’ve gotten dehydrated very quickly from diarrhea or even just watery stools…like within a few hours…to the point that I have to go get an IV fluid push at the ER or clinic. Liquid IV works really well for the intermediate cases that don’t need hospitals, and usually brings me right back around. Costco... [ more ]
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J-Pouch ForumsGeneral Discussion
Defect of small bowel
VergieVergie
Scott F “Defect” is a very general term, so it’s hard to interpret out of context. The full report probably clarifies this. It often means a leak, as New577 seems to have likely had, but that’s much less common in a mature pouch or in the middle of the gut. [ more ]
roseviolet Am wondering if the "defect" could be a ballooning or widening of the small intestine as a result of a stricture at the entry of the pouch which might cause effluent to back up. -- Rose [ more ]
New577 Hi, I am glad that they discovered it now. I had a defect that they missed during takedown. 10 days later I needed. emergency surgery to save my life. Whatever this is, hopefully you will be able to deal with it on a non-emergency basis. please let us know what’s going on as our thoughts and prayers are with you. eric [ more ]
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J-Pouch ForumsGeneral Discussion
Unsettled mornings
P PedroMadruga
AMB Do you eat breakfast on other days and does the timing of that meal make any difference to how you feel during the morning hours? My 1 year stage 1 anniversary is today with takedown 9 months ago. I am still learning and adjusting and adding new foods a bit at a time. I am finding that balancing nutrients: pushing to 40% protein if I can get there with lean poultry, meat and fish, and really cutting back on sugar and animal fat are important. (I would love a Pop Tart, frosted, but won't go... [ more ]
PedroMadruga Hello AMB, thank you for your insightful reply. My routine is usually wake up around 6:30 and on days I have in-person class (Mon/Wed/Fri) I won’t eat until 11:30 which is usually a small snack like crackers or a pop tart. I get home around 3pm and have my dinner which is more than likely either eggs, chicken, or fish. And I take Metamucil 30 minutes before that meal. I hydrate a lot throughout the day, around a gallon. My guess is that I have problems completely emptying my pouch. I just... [ more ]
AMB You're describing how I tend to get towards evenings. (Mornings are best for me.) I suspect it has to do with when we eat, what we eat and transit time. By experimenting with time and type of food, you may figure it out. What are you eating first thing in the morning? I do best with a bowl of whole grain oatmeal with a banana, little or no sugar. Avoiding sugar and unrefined carbs improves things for me generally. Are you using a fiber supplement? Metamucil or psyllium husk? That may help. [ more ]
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J-Pouch ForumsGeneral Discussion
How to find a good doctor for your j-pouch? - general strategies, not based on location
FM Former Member
lclassen ❤️
Former Member I meant Dr for your j-pouch in a very general sense. It can be finding a Surgeon, or a GI. Actually these can be more straightforward to find. I need to find a PCP, and I want someone that is knowledgeable about j-pouches. This is harder. I have no idea how to find such a PCP. I hope someone will come up with good suggestions. [ more ]
Bubba1028 I don’t have. “J pouch” doctor. I have my surgeon who created my pouch who I will call if I feel like I have an obstruction or something seriously wrong with my pouch, but otherwise I just make my yearly appt with my gastroenterologist. He takes care of my pouch scopes every 2-3 years and pouchitis. Is that what you mean but j pouch doctor? I should say I do drive an hour to see him- he’s one of the best in the state! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Finding jpouch nurse/doctor
K Kimmieg56
Former Member Please check this out: https://www.j-pouch.org/topic/...tor-for-your-j-pouch I just posted this after I responded to your question. There are some very useful responses there. [ more ]
Kimmieg56 Thank you! [ more ]
Former Member I would first find the university/research hospitals that are driving distance up to 1,5 hr. I drive that much to see my surgeon and the GI. Then, I would look at the professors at the GI departments that see patients (not all do, some just do research), and mention IBD among their research/clinical interests. Then, I would look at their publications in Google scholar to see which ones published on IPAA, pouchitis, etc. If none has, which is likely, then I would pick the one who published... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Humira for Recto (poncho)/vaginal fistula
kangaroo womankangaroo woman
kangaroo woman Hi, FF. Thank you so much for sharing your journey with me. I apologize for the delay in responding--it took a while for me wrap my head around all of this. Yesterday, I left a message for my GI guy stating that I want to hold off on the humira for now just to do a little more research on everything. I am waiting for my NY surgeon, Dr. Milsom, to set up a TeleHealth session with me. I'd be interested in hearing what he thinks about MAs for PV fistulas. Right now, the entecort has been... [ more ]
F'ing Fistula Hey, how are you doing? I'm sorry you're going through this.. I definitely empathise with you.. I've got one or two P-V fistulas that have taken me through hell the last couple of years... But in answer to your question, I've tried Infliximab (Remicade) and Adalimumab (Humira biosimilar)... My fistula started in 2019 with pretty full on symptoms from the outset.. I had mixed results from both biologics but please don't let it put you off... If the lottery ran on bad luck I'd be a billionaire... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone here play golf or other sports?
B BK 123
Michael Am with Bill and his open-minded philosophy. Lived in Asia for 5 years and ate street food almost every day ... lucky enough to play golf all over Scotland, HK, Indonesia and a few other places ... rock climbed in Utah, Thailand, etc. ... after 35 years with a pouch and knowing the rhythm of the ups and downs ... think tactically but play the long game ... live your life, not your pouch's. [ more ]
BillV When I had my J pouch, I went skiing in the Rockies, competed in horse competitions, traveled widely in the US and internationally, and added a second story to my home. Let your body and your doctor determine what you can do to enjoy life. [ more ]
Nancita Yes I encourage you to resume your sport! I am an adult figure skater and after the battle with cancer resulted in my j pouch, I got back on the ice about 6 months post op. It was hard being weak from chemo etc, but my coach and skating family really supported me through the journey. I skate every week , compete, perform, and work full time. It’s not easy but if you have a sport and a passion I think it’s imperative for your body, mind and spirit to continue 💯💕👏🏽 You can do it- good luck 🍀 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch prolapse
R Rachel1
Rachel1 Thanks so much for your reply I have a consult with him this week. I have a list of questions already!! thanks so much il see what he says [ more ]
AMB I've had 100%! Positive experience with Dr Shen and his team. I also had my surgery at Columbia with Dr. Kiran. Excellent experience all around. Biofeedback was discussed for me, but I am doing well now and have deferred it. Biofeedback does not address the prolapse, but rather a "functional" issue with how muscles are firing in poor coordination so as to interfere with emptying. This is issue is diagnosed by ano-rectal mammography. It can occur along with prolapse, but they are addressed... [ more ]
Rachel1 Thanks so much for reaching out. It’s a big decision. I see him next week although I’ve been informed via a second Dr that biofeedback my be beneficial to the prolapse. I don’t understand how that could help a prolapse but we will see what Bo says next week. I hope you get relief and improvement too [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch - Everything went wrong
G Goody2shoes
Kushami ❤️
Goody2shoes I have resurrected this old post as more than 8 years later nothing much has changed, in and out of hospital, more pelvic abscesses and waiting now for referral for some sort of surgery. I was referred to St Marks in about 2014/15 and was gobsmacked when the surgeon said he would redo the pouch (and not repair) despite me only having 2 metres of small intestine left! I declined, it has been particularly difficult managing a high output stoma with 2 metres, I would hate to think what it would... [ more ]
SueH Goody, have you been seen at St Marks? That is the hospital that seems to see all the people who have had no joy anywhere else. It is my primary hospital but if you haven't tried there, it's worth a shot. The specialist pouch nurse Zahra Perry-Woodford (0208 235 4126)is fantastic at guiding you through the referral process and gives excellent advice, too. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch longevity and pain
DT Diane T.
Linzalisha Hello. Iv had my j pouch for 32 years and it’s been amazing. Some pouchitis/ blockage/ abscess in the past but flagyl and cipro got me better. I have now got some joint issues, pain /inflammation and been on monthly infliximab infusions but currently taking Mercaptopurine and sulfazalazine/hydroxychloroquine which have kept me well but now in hospital with severe abdominal pain all low down and all across and having scans, camera etc to see what’s going on but I’m terrified of losing my... [ more ]
BarbieG Diane, I’ve had my Jpouch for 29 years after suffering with UC for 9 years. Many complications the first few years, mostly from not sticking to a low residue diet. Had a Jpouch redo 13 years ago, think the first one was put in upside down? I was unable to pass digested food regularly. All fixed but I did have pain. Used a heating pad. Massages. Maybe you have a similar problem? Just diagnosed with CD last week but still feel ok, only have a fast metabolism and have diarrhea. A good doctor... [ more ]
lablover My DH is. going on 27 years. That pain might be sibo..(which my DH has). Goes to the University of Penn to have it checked once a year.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Incomplete bowel movements and urgency!
NickPNickP
New577 Nicky, I suffered for a good 6-9 months of incomplete emptying. It’s completely normal for you sit, go , cleanup, wash up and then go running back to the toilet. I thought things would never be right for me. I was told I need more time to pass. It is so true! Now nearly ten months later my pouch is getting closer to working the way it should be. hang in there. better days are ahead for you!! [ more ]
Linzalisha Hope things soon settle but they will. Take extra care xxx [ more ]
Linzalisha ❤️
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J-Pouch ForumsOstomy & Skin
Donated.
MysticobraMysticobra
Mysticobra Mods. Could you please delete this thread. I will find a place to donate them. Thank you. Richard. [ more ]
Mysticobra I'll give it a few days. And see if the little town here has a shelter. If not I'll use the link above. Someone can use them. Maybe not here. But somewhere. Richard. [ more ]
n/a That's kind of you, Richard. If you get no takers, another option is FOW: https://www.fowusa.org/ . I've sent my extras out to them in the past, they are legit. Hope all's well! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Emptying j pouch
K Kimmieg56
F'ing Fistula Hey, I have similar issues with emptying too.. I can almost guarantee that after I think I've finished, by the time I've made it to the sink to wash my hands I'll need to go again. It can be very frustrating! I've always kinda thought it was just a part of having a pouch so just put up with it, but I mentioned it to my pouch nurse at last appointment and she was annoyed I hadn't mentioned it sooner 😂, she said it sounded like I just needed my pouch dilating, which I think they can do quick... [ more ]
Kmiller I stand up, bend over like I'm touching my toes for about 10 seconds, then sit back down. I can literally feel gas or stool, whatever needs to move, shift down. Helps me empty! [ more ]
dlewicki I’ve found that drinking lots of water helps keep my movements better and easier to empty my pouch. I usually try to have a minimum of 64 ounces of water (MORE if the coffee intake is a lot that day). I’ve also found that if I can wait until I REALLY have to go, relax, and let gravity do some of the work that helps too. Did I mention drink a lot of water too? 😆 [ more ]
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J-Pouch ForumsPouchitis
Pouchitis?
J Jenny***
CTBarrister The pouchitis vs. Crohn's thing is basically ancient history. Recent science thinks it's a new disease process that causes inflammation in pouches and neoterminal ileums post J pouch surgery. Your GI should know this if he/she is paying attention to recent studies by the top people in this field. Whether pouch inflammation is labelled pouchitis, Crohn's or "new disease process" doesn't really matter as much as whether it can be treated. You might need to be on biologics although time will... [ more ]
Jenny*** Hi Scott! Thanks so much for your response and insight. Like you said, time will tell with all of this. I guess it’s going to be trial and error when it comes to the prednisone working or not working and if I need to add biologics. [ more ]
Scott F Hi, Jenny. The biopsies may not answer the Crohn’s question for sure (they usually don’t). The mouth sores particularly make me think of Crohn’s, though, but they also don’t prove it. The good news is that you don’t have to have a definitive diagnosis to find an effective treatment, though your patience may be tested during the search. If the prednisone (or the passage of time) gets you back to normal then you could easily resume the relative stability you’ve enjoyed for 15 years, diagnosis... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Could I be constipated?
ValenValen
LovelyCarrot BTW if you’re anxious about blockage and haven’t had one before…you’ll know if you have one. They are VERY painful. Like- groaningly, screamingly painful. Can barely walk painful. So if you’re not experiencing obvious pain then you don’t have a blockage. [ more ]
LovelyCarrot Sounds like a blockage, But as you say, you don’t have pain. Weird. It’s pretty hard to get constipated! But it can happen- I’ve had narcotic pain relievers do this before. As long as you have no pain and not throwing up, I wouldnt worry overly. It’ll clear. Lots of water and you’ll be back to normal. [ more ]
PouchLogic You never know with the bread thing, you can always try and recreate it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Incontinence from Anus
D DianaT
roseviolet Diana, where are you located? I'd be going to a major hospital to see what could be done to help you. You need another opinion or two. [ more ]
Kimmieg56 Ilex barrier paste is the best I have found. Amazon. I understand your pain as I have that problem too. Clean well. Apply paste as often as necessary [ more ]
New577 Hi Diana, I am very sorry to hear of your troubles. I am confused as to why stool has been coming out of your bum if the jpouch has been disconnected via a ileostomy. as to whether you can sue for malpractice who knows? once we sign that surgical consent we are signing away our lives. My understanding is that if a doctor follows accepted medical practices its hard to sue since surgical outcomes are not guaranteed. My further understanding is that removal of pouch and anus are tough surgical... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Laxatives with the JPouch
N Nela
Nela I have a doctor who just doesn't really care quite honestly, and to try and see another specialist in my area is impossible. There really are not that many doctors familiar with the entire picture. My family doc has continued to refer me to different specialists and now it's been three weeks of constant pain, no sleep, and the bleeding has begun. Thanks, Chook, for the info about the prolapse and pelvic floor. I am certain there is more going on - on top of the flap over surgery I had in... [ more ]
Chook2 Have you read about the inner sphincter? It's what stops you pooing while asleep,it can become too tight if it's holding in liquid alot.instead of straining try relaxing and breathing to relax your inner sphincter and muscles.alot of people are in a rush when using the toilet but you need to relax and let go.But it sounds like you have other things as well. [ more ]
Chook2 I just take it to try and have less BMS by thickening it up and the stool seems easier to empty . [ more ]
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J-Pouch ForumsGeneral Discussion
Antibiotic predicament
R RB15
RB15 CTBarrister - Yes i believe in the UK you can obtain Cannabis for medical purposes, but i think you have to jump through hoops, we are way behind you guys on this subject, even CBD wth THC would be great as it would relax me and increase my appetite. That’s an awesome story about your brother in law, the anecdotal evidence from the public around the world on the therapeutic effects of marijuana are almost enough to not even bother with clinical studies. I have got no desire to use it for... [ more ]
Scott F Since Flagyl caused a problem in the past, I’d strongly recommend giving it some time (at least a few days) before adding the alcohol. Also, when medications cause adverse reactions like nausea sometimes a lower dose will turn out to be adequate and cause fewer problems. [ more ]
CTBarrister My problem with red wine is the tannins in it- they give me diarrhea. Marijuana can possibly be helpful in assisting the pain. Doesn't the UK allow it for medicinal purposes? We now allow it in Connecticut for all purposes. In any event, legal issues aside, I think it's a great aid for many people who have chronic pain issues, or stress. My cousin in law, who is a Vietnam Veteran now in his early 70s and collects a disability pension for PTSD related to the Vietnam War, told me marijuana is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What does a fistula or abscess feel like?
B BK 123
BK 123 So I went to get examined by my GI today and he said it felt more like a bone than a lump. He said by examining me he could tell it wasn't a fistula but an abscess was still possible, although he didn't think that was it either. He's scheduled an MRI for me just to put the issue to bed. I'm pretty relieved at the moment, but will be fully relieved based on my MRI results. [ more ]
BK 123 I just started them yesterday and they do seem to help the pain. It's not a searing pain but more of a dull pain when I sit or sometimes when I walk. [ more ]
Scott F It may well have gotten bigger, and the pressure inside may have increased. Do the hot compresses seem to be doing anything? [ more ]
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J-Pouch ForumsGeneral Discussion
Suggestion for noxious stool and gas
K Kelleydg
Chook2 I noticed at my work a air freshener spray was left in the toilet ,maybe aimed at me but I don't know.when I go to the toilet I don't breath through my nose so I don't smell anything and I usually have a bottle of toilet bleach spray to clean the toilet at home and that kills any smells. [ more ]
roseviolet It does work for a j-pouch. [ more ]
Kelleydg I can let you know in about 6 weeks. I'm not sure why it wouldn't, because it neutralizes the smell, but I'm not sure where in the body it does that. It seems popular among gastric-bypass patients. https://devrom.com/reviews/ I'll try to remember to post an update here when I'm feeling stable after my last surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
Ideas on current situation?
ValenValen
Valen @New577 , How did I not think of Gatorade! I was just able to have a pretty big BM, so maybe tomorrow I’ll sip on some Gatorade to ensure I get everything out. Thanks for your input! [ more ]
New577 V, yes absolutely thick stool. I Have the same experience some days from all of the loperamide I take. some days starting at around 400pm, I start going with thick stools. It takes takes several BMs before it loosens up to the point that the pouch fully empties. I think if I drink and drink at least 64oz of Gatorade a day I loosen things up a bit. It’s something you could try in addition to laxatives. [ more ]
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J-Pouch ForumsMen's Health
Middle-age pre surgery
K krakt
PouchLogic I was 30 and had been very sick in the hospital for weeks at a time. No medication helped and I knew I had to do something. I had time to get relatively healthy before surgery which helped recovering, which I struggled with. I didn't like the bag and the adhesive didn't like me. Having a jpouch is definitely worth a try there are possible issues with everything, at least this way you can try and always go back. [ more ]
grr456 I was 50 when I had both steps of my 2 step process and I am 71 now. While it probably took me a bit longer than normal to heal since I was so sick to begin with and then my age, all has gone pretty well for me. Don't be afraid at 44....Just my .02...YMMV...grr [ more ]
CTB23 I had my first surgery at 60 and my last just before my 61st birthday. I have had good luck with my pouch. It has been over 5 years and I don’t have any significant issues. I do use Lomotil anywhere from 2 to 3 times a day and Benefiber. No diapers, though occasionally I have a little leakage at night. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch Scar tissue
therealstingertherealstinger
therealstinger My J-pouch was done in 1998, in 2004 I had scar tissue grow over top of my small intestine chocking it off inside body cavity. they removed it 15 days in hospital and 38 staples. In 2010 blockages again, this time the small intestine area where they reconnected the intestine from colostomy bag. same thing 15 days in hospital. now its starting again, the blockages are pain form he!! [ more ]
therealstinger or do you have to always goto the er and get it, they always run xrays , and ct-scans to run up a bill before they give me dilaudid , I know know what that dilaudid is. [ more ]
therealstinger one more question, did they give you a prescription for dilaudid!! sounds like thats what i need. [ more ]
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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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