tvstahlThank you. Working on getting orders for stool culture. Between Covid and snow, things in NE Ok are at a standstill. I appreciate your comments ! [ more ]
PalsSounds like it is the outside of your stoma based on your description. I know it hard but don’t get nervous. I think if it’s the outside you will be perfectly fine. [ more ]
AMBI didn't even realize that incontinence could be an outcome of pouch reversal. If it was me I think I'd schedule a consultation with another surgeon. Most if the best ones at the main colorectal surgery centers who do revisions will schedule a second opinion as a video conference. I hope there's an answer for you. [ more ]
DianaTHe left the J Pouch and rectum intact but told me now that the only way to stop the rectal incontinence is to have JPouch removed which is a very invasive surgery which requires a long recuperation and does not advise it! t [ more ]
Scott FDiana, do you know what sort of ileostomy you have (loop ileostomy or end ileostomy)? Some surgeons remove the J-pouch (and sew up the anal opening) when reverting to a permanent ileostomy, but that can be a difficult surgery. Sometimes the J-pouch is left in place. [ more ]
JoeJoeThere could be a possibility you are experiencing blockage. Have you tried eating smaller meals and drinking more water? [ more ]
Chook2I've had some very bad stomach pain and Ill drink some peppermint tea or ice peppermint tea,one night my stomach was bad and I was in mild agony so I added a peppermint tea bag to my vodka and electrolyte drink and the pain went away almost immediately. [ more ]
ktaOops, Scott, you are totally correct about the fluids. I usually drink a lot but got distracted that day. I also snarfed carrot salad for breakfast and think I ate way too fast. So sad to see that grated carrots now get me because I love them. [ more ]
Roxy64Thanks for the replies and positive comments. I am still in the hospital but feeling much better with the loop Illiostomy . Hope to be discharged once my output thickens. The the big change in diet has to happen before takedown. roxy [ more ]
Former MemberIn my opinion, there is only one way to find out. I think you will be happier with the J-pouch, I know I am much happier with the J-pouch than the bag. I would say give it a chance and if it does not work, at least you can say you tried [ more ]
Scott F@Roxy64 I was in the hospital for ten long days after my surgery. Once it’s over it becomes just a memory, but while it’s going on: sheesh! [ more ]
FrustratedMy thought is that the amount of immodium you are taking is slowing your digestion down so much, that your intestines are not moving the food down, but liquid flows no matter what. Id suggest lowering your immodium amd increase your metamucil. Im not a doctor of course, but i dont even use immodium for the same reason. Its all timing too, like take immodium in the early evening, but make sure you have regular meals. Also if you eat more of the BRAT diet, that should help thicke things up so... [ more ]
Bill KThank you. My stool is consistently formed and much like peanut butter. I may have been over doing it with Imodium. I’m going to cut back on daytime usage and take full dose before bed. Thanks again. [ more ]
Scott FI think it’s probably worth trying a few things to see if you can end the overnight incontinence, at least. That’s not the outcome to expect at this stage. The stool consistency that tends to work best is something like pudding or applesauce. You haven’t described yours, so it’s tricky to know what might work best for you. I’ve found that things go better at night if I don’t manage things so aggressively during the day. I use Lomotil (like Imodium) at bedtime, but not during the day. I... [ more ]
FrustratedI know your post was quite some time ago, so unsure if you have had improvements with your issues. It takes time for your body to adjust, and you need to adjust how you eat, and maybe even what you eat. Everyone's a bit different. I have had my J pouch for 17 years. I discovered metamucil caps a year ago, and it has beem a life saver. Less liquid poops and much less occurring butt burn. There isnt a lot of support out there, and people dont like to discuss this topic. Surgeons aren't much... [ more ]
LeannI had my J pouch constructed over a year ago included an ileus and 35 days in the hospital. To date have not had the take down as within a day of having the pouch constructed I am incontinence and all my surgeon says u are likely to be that way but why wouldn’t u try ? I have gone to the pelvic floor clinic and they say muscles are good except at rest and not sure I feel anything no warning when I am having the leaking so at rest they say my anal sphincter at rest is wide open so I’m... [ more ]
Sara O'RearI'm wearing pull up incontinence briefs because I can't control when I poop. I haven't started eating yet but I'm going to give it a try today. Maybe this will thicken things and make my bowel do more normal peristalsis. Right now I'm just completely distended and things are rumbling and gurgling like crazy. [ more ]
SadieM1210@Former Member I completely understand your struggle with excessive gas. I too suffer from it. No matter what I do or eat or not eat, that darn gas won't go away! No medication helps. I have SIBO so I started taking xifaxin (my insurance wouldn't approve it but my GI Dr is so awesome that she rounded up free samples of it for me). I just completed my 2 week course and to be honest I didn't feel a change with my gas issue I think that some people's body just produces excessive gas. I would... [ more ]
New577Hello, I happen to have IPS and SIBO. I will try to explain my symptoms and I hope it will be helpful for you. in addition to UC, I was a lifelong sufferer of IBS. The symptoms of IPS kind of mimic IBS. I have spasms, cramping and frequency of small amounts of stool. I take levsin sub-lingual to alleviate the IPS when it occurs. I also watch my diet so as to not ingest foods that will induce irritation. I was tested and had a positive breath test for SIBO. But I knew I had it because of the... [ more ]
Scott FWhen my main (only) symptom was excessive gas I was treated for SIBO, and that did the trick. It did take a couple of months, though. [ more ]
Scott FYou might have a GI infection, like C. diff or Giardia, or even a virus. A stool test could help figure this out. How long has it been going on? Another possibility is pouchitis, but it’s best to rule out an infection first. [ more ]
ZulHi Rikke, I have not yet, I spoke to my GP and he said that because nothing was found during my sigmoidoscopy in terms of haemorrhoids, he doesn't think it is this. So he had me do a blood test and send a stool sample for tests. I've not heard anything back from those tests yet, so kind of waiting for that. I saw lots of blood this morning too, wasn't streaks, it was a lot on the tissue and in the toilet. I can't figure out what is causing it, I don't think its my diet because I've tried so... [ more ]
LoveLifeHi, did you find out, what it is? I have just had a lot of not dark blood as well and got quite concerned. Best wishes. Rikke [ more ]
Jfill21Sounds like hemorrhoids based on my own experience. The bright blood is common as it’s near the exit. The increase in blood you see with harder stools could be that you’re straining to push the stool out and causing the hemorrhoid to get inflamed. If you have high frequency- such as in a flare- the increased movements can also cause inflammation. Interestingly, my hemorrhoid wasn’t identified on my last pouchoscopy but I know it will “rear up” if I strain. [ more ]
Doug KThanks so much! I will give it a try for sure. [ more ]
J.P.M.Highly recommend Visbiome. It immediately changed my susceptibility to chronic pouchitis after 25 years of cycling on and off antibiotics and dealing with pain that interfered with my work and life in general…..actually was recommended by an anesthesiologist when I was having yet another exam under anesthesia. Definitely angry that neither my gastroenterologist nor my surgeon offered this intervention….6 years after starting Visbiome I have gone from 5-6 antibiotic RX/year to only 1 in the... [ more ]
Doug KThanks Steve - glad to hear you found a solution. I appreciate the post. [ more ]
AMBI couldn't tell from your post what your underlying condition is, but since you reference a flare, I'm guessing colitis and given the fistula, Crohn's. Given that, you'd want a very experienced surgeon. Also couldn't tell exactly where you're coming from If Cleveland is an easier trip (and staying at the clinic hours before/after or for family can be easier than NYC) the head IBD colorectal surgeon there is another potential consultation: Tracy Hull, MD. [ more ]
zackkThank you for the response, I don't mind paying as money means nothing to me. [ more ]
Former MemberI guess a general IBD for forum would be better place to ask this question, as it seems like you do not need a j-pouch. Nevertheless, Dr Greenstein at Mt Sinai NY and Dr Remzi at NYU Langone are great colorectal surgeons, and could probably help you with your surgeries. If you end up needing to have a j-pouch eventually, they are among the best for it, if you can afford to come to the US. [ more ]
Mema 1Thanks, Skn69....I think it was some kind of blockage...my stomach was very hard and I had output, but I'm pretty sure there was something stuck....I'm fine now, thanks for your response!! [ more ]
skn69Hi Mema, Could it be a blockage? Did you overdo it with food? Have you been exercising more than usual (yoga positions can flip things around inside of you)...a twist or a mechanical blockage from food? Are you rumbling inside or hurting? Do you have any output? Let me know S [ more ]
New577Hi Angie, please do not panic! I would be as confused as you are. I re-looked over my recent pouchoscopy biopsy results and it’s states ‘mild active chronic colitis in the anal transition zone.’ The doctors call this cuffitis. Since the ~2cm cuff is the only remaining colonic tissue leftover, it is the only place colitis or cuffitis can still occur. the biopsies will tell you exactly what is going on, whether it is cuffitis, pouchitis or something else. ask the doctor when he gives you the... [ more ]
F'ing FistulaHey, sorry things aren't great for you at the moment... I don't know anything about hemochromatosis I'm afraid, but have you looked into Primary Sclerosing Cholangitis at all? It's an auto-immune condition of the liver with strong links to IBD... I get severe fatigue with that too and my liver enzymes are constantly off the charts.. Sorry if that's not helpful at all.. good luck with getting a diagnosis and look after yourself 😊 FF [ more ]
Connie GildersleeveI had one that put me in the hospital. The doctor put me on an IV fluids, and if I couldn’t pass it in 24 hours they would have to perform surgery. Thank goodness I did and no surgery. I used to get plenty of partial blockages, but since I now take nightly warm water enemas, I haven’t had any problems. [ more ]
LovelyCarrotI get blockages a lot, have for 20 years. The best results I’ve had are when the GI does a scope with balloon and stretches open the stricture that the food has packed up against. They don’t suction it out, but once the pipe is opened … it works 😀. Usually I go to the ER, get on morphine for the crazy pain, get in a bed, and then have the scope after a couple days to see if it clears on its own first. Thats a pretty recent development though for me. For years prior it was an NG tube and... [ more ]
LovelyCarrotInteresting. I'll have to ask my GI about self dilation options. I get the scope currently for stretching the anastomosis, but also to check for the state of my chronic inflammation in that area, so I'm not sure I'd do self-dilation anyway. BUT - I'm curious about it as an option for blockages, as that's the point that I have blockages due to stricture at the anastamosis where the pouch connects to the rest of the small intestine. Thanks. [ more ]
Big DHPretty sure what you have dilated by balloon is the attachment between the pouch and the rectum... technically the "anastomoses". Self-dilation is an option using Hegar dialators. Apparently strictures can commonly form there or the opening can gradually become smaller needing dilation one way or another. [ more ]
LovelyCarrotThe more food you eat, the more active your intestine is and the more stuff “packs up” against that obstruction. When I have one (often) I eat as little as possible and sip water and sport drinks just to stay hydrated. Sometimes I’ll have a little jello or milk. Put another way- when I go to the hospitals for obstructions they stop all by mouth until cleared. You don’t want to make your situation worse by adding more stuff to bloat out your intestines. [ more ]
Drbev603WOW! So helpful to know! I'm not sure I've ever had an partial obstruction. Thank you! [ more ]
LovelyCarrotSounds like you’re well past it now- but I get partial obstructions a few times a year and get hospitalized every couple of years, and my experience is similar to yours- even after it “clears” I’m in pain and bloated for a few days afterward with mild nausea and lack of appetite. I think it’s just the stretched out intestines returning to normal- takes some time. [ more ]
KgendronI honestly don't know. If Stelara doesn't work, there is Humira. I'm really out of ideas [ more ]
LovelyCarrotClear liquid meal prior to the procedure (no need for a full day, just be on clear liquid a few hours before). Couple of Fleet enemas an hour before leaving the house. It’s pretty easy, no need for all the mag citrate and colyte etc that a colonoscopy needs. Theres another thread on this by someone else in General. From that thread it sounds like it’s common for people to get varying instructions, particularly from staff that don’t know the custom needs of a pouch. So if you’re told to do... [ more ]
1993SPouchI had to do a fleet enema (the one your squirt into your pouch). It was easy and didn't cause me any trauma. I had to do it one hour before the procedure. Good luck! [ more ]
Scott FPreps vary a lot for pouchoscopy. For most purposes it seems to be sufficient to have clear liquids starting the previous afternoon (or the whole day, if you like), and tap water enemas (using an emptied Fleet’s bottle) before the procedure. I’d repeat the enemas until the output is pretty clean. Some people use various laxatives (Mag Citrate, etc.), but I don’t think that’s necessary to clean out a little J-pouch. [ more ]
BK 123For a surgeon I would recommend Dr. Suraj Alva, he is a part of Bertram Chinn's practice which is relatively well known. They're office is based out of Edison NJ and they also have an office at Overlook Hospital in Summit NJ. https://health.usnews.com/doctors/suraj-alva-672539 [ more ]
Jim OrodGet occult blood stool test from doctor. Suggest CBC to check for any change in blood chemistry for red blood cells. [ more ]
daviwyatNo Meds yet went to regular doc and he referred me out to GI. BUt now I have anal pain and some mild cramps when I realize I need to go to bathroom. Pain is inside and is painfull when i pass gas. GI is booked up for over a month, so i am trying to catch a cancelation appointment. [ more ]
Jfill21I was worried about my j-pouch which is why I went back to the Cleveland Clinic. Never heard anyone say this biopsy procedure could pose a risk to my pouch. [ more ]
New577Hi, I run a very high PSA, and had my last biopsy prior to the TPC/IPAA procedures. My surgeon has been adamant that other then a DRE, absolutely no instrumentation in the jpouch. So someday when my current urologist wants me to have a MRI of prostate I will do it without the rectal coil. [ more ]
Al PIs your biopsy being done in dr office or in hospital under anesthesia? [ more ]
1993SPouchI've had it on and off for about 1.5 yrs. I also have to get a surgical dilation because my pouch outlet (anus) has narrowed significantly after 27 years of having the pouch. Perhaps that has more to do with it than the food itself. The itching can be SO horrible. Right now I've been itch free for about a week. Like I said, it's been on and off.... [ more ]
BrellisI cant say mine is related to food. I have been eating the same as always… Hemorroid cream can help numb the area a bit yeah but you cant use that for too long… How long periods of time do you have these issues? [ more ]
F'ing FistulaFrom what I know, a fissure just like a small cut. I've only recently discovered that I've got a few that explains a lot of my issues, but never noticed them before because I've never been one to look.. until fistulas came my way, now I have to check regularly. I've always had episodes where I would still bleed on the loo, and I struggle a lot with 'butt burn' (10yrs post op).. I always just assumed it was normal, my pouch nurse has never been concerned about it, and it came and went enough... [ more ]
AMBMucus discharge is normal after the pouch is constructed, before it is attached. an ostomy nurse mentioned this to me while I was in the hospital. I was glad she did, because otherwise when it started, a few weeks after the surgery for me, it would have been quite a surprise. I understand that the mucus is generated by the mucosa in the rectum; it's not coming from the pouch itself. I'd guess that amount varies from person to person - as does much else with this new anatomy. [ more ]
Former MemberExplaining everything to the hospital might help, I know my parents stayed with me a lot during my hospital stays, they slept in the chairs. [ more ]
Chook2Alot of people at my work have drink bottles and alot of the older men use the urinal as many times I use the toilet.Your employer would rather you use the bathroom than have to call in professional cleaners and close the store if you have an accident .and many employers have friends or family with the same health problems so they understand.I had a boss who's wife had Crohn's and another boss who's son had stomach cancer and another boss who's wife had the bag. [ more ]
Doug KDon't worry about taking water and bathroom breaks. Do what you need to stay healthy. It may be inconvenient, but honestly, it would be very unusual for an employer to cause trouble over this considering your situation. Also, when I am busy at work, I seem to go less often. But everyone is different. Best of luck and congrats on the job. It will be great. [ more ]
girlunkyYes, Scott is right, go every chance you get. And try to pace your drinking rather than a large amount at once. Plus wear a pad (like poise) in case you don't make it. [ more ]
tulsamomThank you so much! So interesting and now I finally understand. I really appreciate you explaining it in a way I could understand. 😊 [ more ]
Pouch2021Serotonin is produced by Enterochromaffin cells (EC), among other cell types, in the gut including in your small intestine. Bacteria don’t make the serotonin in your gut though the interaction between microbes and the ECs are important to their function. ECs can be stimulated to produce serotonin by a number of signals like mechanical stress, microbes, the content of your meal (e.g glucose). The serotonin produced acts locally in your enteric (gut) nervous system to regulate peristalsis,... [ more ]
Former MemberYeah the human can adapt to anything, that is what makes us different from trees. [ more ]
n/aThere's a Convatec Orabase protective paste that I've used on my peristomal skin, which does stick to raw areas. (I tried to add the Amazon link, but doesn't seem to work: search Amazon for "orabase protective paste".) There's no ingredient list on my box - it states that it's a "smooth, ointment-like paste that adheres to moist areas..." It may be worth checking out for your purpose. I now have a fluid pocket of some sort as a probable result from jpouch removal surgery, and have a similar... [ more ]
JHendrixThanks Scott. Thats the type of product I'm looking for although I definitely don't need a steroid in it. I will investigate further. [ more ]
Former MemberSorry to hear about that but congratulations on your surgery coming up!!!! I am so excited for you!!! Let me know how it goes!!! If you have any questions about the process, hit me up [ more ]
Former MemberGot it, thank you for your input Scott. I really appreciate it! [ more ]
Scott FA CT scan would probably not be informative. Since you have surgery coming up anyway you could ask the surgeon if it’s possible to take a look and lyse any adhesions in the area that’s giving you symptoms. They will generally not do surgery just for that purpose unless the symptoms are disabling. [ more ]
Former MemberGlad your okay!!! I hear soda helps with blockages. In the future on how to prevent blockages: drink water before, during, and after every meal. Walk around after meals, and chew chew chew your food very thoroughly. I have had my pouch for 7 years and no blockages, Hope this helps love [ more ]
dlewickiUpdate: the team think this could just be normal post op stuff and my body adjusting to the new normal. Up until now I hadn’t had any issues so it was more surprising than anything. 1 day at a time I suppose when it comes to people in our situation! [ more ]
Brellishello, im wonder as you said @FRH about the open fissure. Did it heal? Or what did you do to make it better? i still dont know whats causing my extreme itching in the anal canal (not on the outside on the skin) and seriously acidic stool and butt burn. i dont eat anything different from what I usually do so cant really see what its coming from. I’ve also used Mosed of the creams without relief. Could a zinkpaste help? (My surgeon think it Will dry out the area too much) [ more ]
akteacherThe Calmoseptine did the trick! I’ve been using it ever since & it pretty cleared up the issue. I used it religiously after every bathroom visit & now only have to use it occasionally. i ended up not going to NY. Just didn’t think it was safe enough to travel there, so I’m probably not going to see Dr. Shen until sometime next year. Dr. Shen has been really great with the telemed, so I feel good about waiting. Thanks everyone for all your help! It is much appreciated! [ more ]
JHendrixakteacher, you had posted back in May that Dr. Shen thinks it (anal itching) "could all be due to other things" and he recommended that you come for 3 procedures. I'm just wondering what he thought could be causing it and also whether you ended up going to New York. Just looking for an update I guess. Thanks. [ more ]
Robert L. Boyer M.D.I met with Dr Dietz at Cleveland clinic in March 2022 for concerns relating to my Koch pouch (Barnett) which I have had for 42 years. As a patient and now retired physician, I was very impressed with his clinical acumen [ more ]
JHendrixIn response to your questions AMB, I was confident in Dr. Hull's assessment that the procedure (for pouch/vaginal fistula) which would have been done by Dr. Shen, would not have been successful. I continue to look at potential solutions but, for the most part, just live with it. jfill21, could Dr. Hull refer you to a GI doc? She must have working relationships with appropriate doctors. Also, there must be others on this site that had to change doctors when Shen left and can suggest one for... [ more ]
Jfill21Thanks everyone. I’ve had my surgeries—I’m looking for a gastroenterologist as stated in my post. Dr Hull was my surgeon for steps 2 and 3 but now I need a good clinical jpouch doctor. [ more ]
Former MemberAll of your comments give me hope for the many years to come with my pouch, thank-you [ more ]
girlunkyRoxy sorry you have to wait so long with the hernia. Not surprisingly I do worry about hernias, but I haven't had one despite four abdominal surgeries for the j pouch plus an earlier one for a kidney donation. In fact I do a fair amount of core strengthening and also weightlifting. I even did (very light for me) workouts when I had the ileostomy. Maybe my strong abdominals pre-surgery helped? Anyway, I started back very cautiously after each surgery. The only weird thing I've noticed is that... [ more ]
Roxy64One of the reasons I’m going to have surgery now is because I have a pretty serious hernia that needs to be surgically mended. My understanding is that anybody with an ostomy is going to end up having a hernia since an ostomy is itself is a hernia. A friend of mine Who has an ileostomy post colon cancer had multiple hernias and ended up in the hospital for 11 days post surgery Because his colon would not start functioning. He is now ok. My understanding Is there without the J pouch and just... [ more ]
Former MemberI always do Greek Yogurt for maintenance, about 7 years out and never had pouchitis. [ more ]
Scott FDaily antibiotics are a reasonable treatment for chronic pouchitis - I hope that’s what you’re “maintaining.” Assuming that you are treating chronic pouchitis, and that you’ve worked out your best doses of fiber supplements and bowel slowers, then you could try switching to Cipro, or (if that isn’t sufficient) adding Cipro to your Flagyl dose. When Cipro started to lose effectiveness for me I got good results by adding Flagyl. [ more ]
Former MemberIf the meds do not work, there is always biologics that can be used down the road. Definitely try everything else first if you can, like the meds mentioned above. [ more ]
Funky26@SteveG Thank You Steve for all your help. Very much appreciated. [ more ]
SteveGIf you think it is a pouchitis / cuffitis then try the mesalamine as your doctor said. But if there is no improvement after two weeks then switch to another med, consulting your doctor of course. If Cipro alone does not help and causes constipation then a combination of Flagyl and Cipro (with a lower dose of Cipro perhaps) may do the job. I still use budesonide (Entocort) to protect me from cuffitis, that's cortisone with a mainly local effect at the end of the small intestine / pouch. It is... [ more ]
Scott FLeakage is (for me) a symptom of mild pouchitis, so I don’t know how I’d be able to tell it was gone if I still had leakage. [ more ]
Indy_DaveIt seems to have been cleared up. Only symptoms i have is just trying to get my strength back and the leakage under control. I wasnt overweight so the 15 lbs was alot to lose..both seem to improve everyday [ more ]
Scott F@Indy_Dave Are you sure the pouchitis is fully cleared up? [ more ]
Mrs PHi. I agree with girlunky about getting the area clean and dry. All of those suggestions are right on. I also use sensitive baby wipes and A&D Ointment, found in the baby isle. This ointment is a life saver for me! Hope you find relief soon 😊 [ more ]
girlunkyA short course of cortisone cream, your doc can prescribe a stronger one that OTC. Plus you need to keep the area very clean and dry. Try warm baths one or two times a day, then blot dry and blow dry with warm not hot hair dryer. You just need enough water to sit in and only use baby wash for soap. When you go don't wipe. Rinse clean with warm water in a squirt bottle then blot dry and the hair dryer. I've been brought to tears with pain there, and have learned that gentle cleaning, staying... [ more ]
Scott FYou could try cortisone cream, but don’t use it forever - perhaps no more than 2-3 weeks. Good luck! [ more ]
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.
Forum moderator and advisor Jan Dollar R.N.
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