AndreitaDr Remzi is in NYU Langone and I traveled to see him. Worth it! What did your new surgeon say? [ more ]
Uc-DanielleIdk! That’s what I’m afraid of. I see my surgeon this afternoon. I will hope he will at least want to look at the pouch. I hate it bc remzi left and I don’t have the bond with this guy as I did with remzi. And his staff. Took 3 days for them to even get back to me. [ more ]
JJAA fistula is like a little tunnel that starts in the re tap/anal area and leads away and out-sometimes creating a tunnel from the rectum/anal area to the vagina, or sometimes just from the rectum/anal area and out through the skin of the buttocks (or sometimes the tunnel doesn’t connect to anything (yet)-just tunnels off. They are more prone with Crohns than UC, but also not uncommon to happen with UC at the site of the anastomosis (where the j pouch is sutured to the rectal cuff). They can... [ more ]
Former MemberCan you explain the difference? That would be great!! [ more ]
KushamiI am reading this thread with interest because I am supposed to have a pouchoscopy in the next few months, my first since megapouch. I am a bit converned because my pouch is HUUUUGE now and enemas do almost nothing. (I know because when it went “mega”, I tried to use them for weeks. Even Fleet does nothing but burn.) I don’t think I could tolerate a strong laxative or fasting either because I’m pretty weak these days. It will be interesting to see what the surgeon and bowel procedure nurse... [ more ]
LovelyCarrot(Clarification). Two Fleets, 1 hour before leaving. NOT two fleets every hour 😀 [ more ]
LovelyCarrotChiming in with my own prep- clear liquid just the meal prior (breakfast if a morning scope, lunch if afternoon). Normal food prior to that liquid meal. 2 fleets an hour before leaving the house. Nothing by mouth once doing the fleets. That’s it- couldn’t be easier. Note this is for a pouchoscopy and a balloon dilation procedure which I do every 6mo. The mag citrate and 64oz drinks and days of liquid are totally unnecessary unless your Dr is scoping up much further than the pouch. I agree... [ more ]
New577Hi Joni, As I recall prior to colectomy, several times when my GI removed large lesions from my rectum, he used clips. My body did not like those clips and I had several post colonoscope days filled with cramps and frequency. Not the same as your pouchoscopy experience, but I assume nonetheless, the body does not like foreign objects in it. And, after my recent pouchoscopy, I remember it took a number of days for loose stools, diarrhea and cramps to subside. [ more ]
Former MemberYes, there is a recent paper about it: https://pubmed.ncbi.nlm.nih.gov/31579976/ [ more ]
JJASince I got my bidet attachment my butt burn episodes have decreased by 95%. Worth it’s weight in gold!!! Spend way less on calmoseptine and other creams, wipes, etc. it paid for itself, for sure, and I miss it when I’m away from home! [ more ]
lclassenI've always had good luck with Calmoseptine to keep my butt protected, and has a calming/healing effect with me. And, for me it's almost always spicy foods, multiple BM's (10+ day) or sitting a long time (i.e. airplane trips) - although that could also be hemorrhoids . Good luck, and I hope things calm down for you! [ more ]
Chook2Yes I think isn't what I ate but how much and even how fast or chewing.and straining in the morning hoping to do a clear out.The magic bullet has been great as well,Greek yoghurt,mixed berries and a small banana with soy milk psyllium husk. [ 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 ]
JaydogYes it takes a while to get the hang of it. I'm a little over a year out and I'm still fine tuning things. [ more ]
Chook2It sounds like your doing really well for just one month.you sound disciplined which will help you alot. [ more ]
AndreitaIt's been a month now and I'm doing pretty well. I'm eating 1 to 2 meals a day. I'm no longer in pain when I eat. I found metamucil helps a ton. I mostly sleep through the night and I don't need diapers. Gas pain is manageable with gas-x and beano. I have a food journal so I already know what can cause me gas. And I can release gas over the toilet. This wasn't possible before. I felt really discouraged in my last post and the first week after. But things calmed down. It can only get better ... [ more ]
AMBState laws vary, but some (NY) define who may make decisions for you in the absence of a "healthcare proxy" or "healthcare power of attorney" (terms vary by state.) Best to identify someone to name as your healthcare agent. Can be family or a friend, and talk to them about your wishes which may change over time. PA forms, which are "statutory" - a form from the state's law books - are available online or through your hospital system or doctors office. And they're free. So you can name an... [ more ]
Jan DollarEveryone has their own take on this, but even if you do not want to give medical decision authority to a family member, it is a good idea to discuss at least in a general way what your wishes are in various scenarios. Hopefully it would prevent conflict when and if the need arises. You can enlist a close friend to be the contact if you become incapacitated. It is best to have someone local. Jan [ more ]
New577Hello, My wife and I completed this process before beginning my surgical journey last year. My comments are based upon the laws of the state of Florida. We were advised by our estate attorney not to do advanced directives as they would override everything else, and not take into account what is going on at the moment. In other words, we are better off with mutual health care proxies for each of us. Given the emergency surgery I had to undergo, she was in a position to carry out my wishes,... [ 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 ]
Joey AThank you, Jan. I’m vaxxed and it’s been a tough 2 weeks. My pouch seemed annoyed in the days prior to testing positive. I’m still painfully tired. take care [ more ]
Jan DollarAs far as I now, Covid 19 does not have a specific effect on an IBD course or a j-pouch. However, vomiting and diarrhea is a symptom of acute Covid 19. Nowhere have I read that the vaccines stimulate inflammation, except in very rare cases of allergic reactions. They stimulate antibody/lymphocyte formation to fight future exposures. I suppose you could think this inflammation, as you can develop mild symptoms from it. The virus itself is another story. Most people have mild disease, but... [ more ]
Joey AWhat I originally asked about was, how, if at all, has COVID affected pouches or IBD illnesses? NOT the vaccines, but the actual illness. I would still like any info if anyone has had an experience with having COVID. [ more ]
Jan DollarI am so sorry that you have this diagnosis. I would love to tell you that not having a colon would make a difference in your prognosis, but I cannot imagine how it would impact it. My dad had pancreatic cancer, so I do understand how helpless you must feel right now. The Lustgarden Foundation is a front runner in research and can help you navigate your options. Hugs! https://lustgarten.org/patient...y/treatment-options/ Jan [ more ]
Jan DollarI had annual scopes for few years, then my GI recommended less frequent intervals. I have never had any dysplasia or cancer found and my GI now says 5 years. I am over 26 years post colectomy and 51 years since my UC diagnosis. So, it is definitely not obvious or required to have annual scopes. It is individual. Jan [ more ]
MrVernonThank you all for your input - this has been very helpful. I'm thankful to have a community of brothers and sisters who are willing to pool their knowledge and share experiences! [ more ]
Scott FI agree about the easy prep for a pouchoscopy. I wouldn’t use the Fleet enema solution, which is designed to be irritating (to induce evacuation of the rectum for those who have one), but the emptied Fleet bottle is a very convenient tool for rinsing out the pouch when it’s been refilled with warm tap water. [ 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 ]
Pouch2021Hi Capper, I'm sorry you aren't feeling well. I'm not sure which part of your story you were seeking advice on so I apologize if this is unsolicited. A few things came to mind when I read your post. First, joint pain can certainly be associated with IBD (often called enteropathic arthritis and is typically considered under the umbrella of seronegative spondyloarthropathies, aka SpA). The arthritis can affect the spine and sacroiliac joints causing low back pain and can either following the... [ more ]
RichardCAfter my 2nd takedown (first failed because of an undetected leak), I got pouchitis right away. Each bout was always preceded by terrible pain in my tailbone area. My GI said I had a small sinus tract but that didn’t go anywhere, but it was located in the back of the pouch. After a couple of years we did a CT Scan and they found a pocket of air that was connected to the sinus tract. I went to Cleveland Clinic 3 years ago, where a great doctor did a MRI, saw where this abscess was pushing on... [ more ]
DJJ2019That's really helpful. I'd be curious to see where my connections are in relation to where I feel things in my abdomen. I've had some rough patches, but overall good for a long a time. I'm grateful the antibiotics work. [ more ]
1993SPouchI recently had an abdominal ultrasound and the tech showed me on my abdomen where my pouch starts and I was surprised at how high my pouch starts, Right up and to the left of my belly button. So I think that pouchitis pain can be quite high, near the takedown site. [ more ]
sldrx(1) I am looking for info on David Dietz so anyone with info and/or experience with him, PLEASE PLEASE reply. (2) Regarding anemia: Blood clotting factor is mostly produced in the colon and since we don't have colons, our blood does not clot as fast as the average person's. Our catheter holes have slightly sharp edges, even if they feel reasonably smooth, so we have chronic 'micro-bleeds' that can eventually make us anemic. Even if you don't get low enough to qualify for that diagnosis, you... [ more ]
JLHSo sorry to hear what you have gone through. Terribly exhausting. I agree that you are more than ready for IV iron, but unfortunately I can’t write out the script. There is now an IV iron in one infusion instead of five spread out over 10 days or so. And it only takes a half an hour of being in clinic. What is your ferritin level ? B12? I think that iron pills are not effective because they don’t dissolve until past the beginning part of the intestine where Iron is absorbed. Or iron is... [ more ]
BevSDCMy iron is also low enough to need IV iron. My colon was removed and j-pouch created in December 2016. In March 2017 I had my takedown surgery which was followed by a massive c-diff infection. Had major surgery in August 2017 to fix a bowel obstruction caused by an internal hernia where the intestines fell back and started to attach to my ovaries. In November 2017 I had my second takedown surgery and I'm not sure the inflammation has gone away. In December my total iron was 25. About a month... [ 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 FIt’s wise to continue the annual scopes (with biopsies), but the risk of a new cancer in such a small amount of rectal tissue is low, even with a (37 year old) cancer history and ongoing irritation. [ more ]
New577Hi Hattie, I understand your concerns. I also suffer from occasional burning and itching in the lower anal canal. When this occurs I need to sit on the bidet and manually cleanse that area while the warm water is hitting that area. It’s not ideal, but if I am gentle, it gets the job done. I mentioned this to my surgeon during my final follow up visit and he suggested warm water enemas to help cleanse the area. my understanding of future cancer risk as it relates to 2cm rectal cuff is that we... [ more ]
jan15Thanks for the heads up. Good info. For others out there who like to learn more about our conditions, and how to manage them, Columbia will have its second IBD symposium next week. Below is posted the link to register (do so as a patient) and a description. Get back to me if you have any questions and please if you attend and have comments either send them to me or--better yet--fill out the evaluation form. I thought the first one was excellent! Jan... [ more ]
ytcrockpotThanks for the link, my gastro doc is one of the 37 Authors [ more ]
jan15If you don't mind traveling to NYC the GI group at Columbia is fantastic. In Columbia's last Symposium they did mention another drug that has come down the pike since the Humerias and Remicades. As I have a K pouch that lecture was of interest, but didn't take notes. There is another Symposium next week, and if you register you can get the video. Might not be at a convenient time. They are excellent. Below is info and link. Register as a patient. Prior to the 14th an agenda will be sent,... [ more ]
CTB23Hi Bob, My surgeon had recommended Dr. Marano to me a while back, but I really haven’t needed anyone. I believe he is in the same practice as Dr. Garsten. My husband went to Dr. Bhupinder Lyall and liked him very much, although he only had his colonoscopy with him. I also met him at the time and liked his manner, nice guy, easy to talk with. The guy I went to prior to surgery was Dr. Leventhal, but I personally would not recommend him. I think he’s just too busy and maybe not as thorough... [ more ]
MetsFanI live in the Waterbury area. Maybe it is just because I was with him so long and we had a good relationship. He knew when I said what was wrong what we should do to fix it. This TB thing though leaves me questionable. Bob [ 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 ]
ValenHey @Fredz I haven’t tried a ‘meat only’ diet but I do consume a lot of meat during the week. I’ve heard many people say that meat is not good for us but I think the contrary. I find that meat, while on the heavier side of foods, is very nourishing and actually helps firm up my BM. I think that the protein in it is very beneficial to us J-Poucher’s considering the amount of it we loose when we have loose BM and just in general. I would recommend it, but incorporate other food too. Don’t... [ more ]
JamieSPaige, This sounds like it could be a fistula tract between the pouch and the vagina. I would definitely contact your GI surgeon if this is happening. Jamie [ more ]
PaigeHave any of you had mucus or something also draining from your vaginal area as well as the anus? [ 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 ]
New577I am going to agree with everyone here. I had my procedure, due to high grade dysplasia in the rectum. Beyond the 2cm rectal cuff I don’t know where else it could occur in my case. I have an affirmation that I tell myself so i can get thru the crazy and difficult times with this new anatomy: 1. I am alive 2. I do not have a permanent bag 3. I will never get colon cancer. although nothing is certain in this life, I choose to believe the above as it rationalizes the huge sacrifice I made to... [ more ]
DoughBoyInPHL78hello, I second Scott's advice. more frequent surveilence by way of pouchoscopies should be what you need to discuss with a good/caring gastroenteroligist versed in j-pouches. I've not heard of taking anything as a chemo preventive thats more for if you have active cancer and need chemotherapy. I have fap (Google if you want to know about the disease) and im not on any preventive meds, i get scopes each 6-8 months and ive been fine (knocking on wood) and my j-pouch is 20 years old. Was... [ more ]
Scott FI don’t think there’s any effective medication for cancer prevention. There’s a good chance that it won’t reappear, and it’s a good idea to have regular pouchoscopies (your doctor may offer a recommended frequency). [ more ]
CTBarristerOne of my past girlfriends had this issue. She had a very severe blood clot in her leg, was hospitalized, and they told her no more birth control. Like Lexi above she suffered from virulent periods. So she started using marijuana rather than birth control to tolerate her periods better. Mariana, I am sorry to hear about your Covid situation and loss of your baby. [ more ]
Mariana RochaI had a severe blod clot when had takediwn surgey (1st step) im 2012. Stopped all bc pills since then. I got pregnant and needed to use aspirin and clexane. Unfortunately I was 7 months pregnant, I got Covid (jun/21) and my situatiom got pretty bad, went intensive care. My baby girl did not make it. [ more ]
LexiI had a dvt (blood clot) at the time of my first surgery. I was told that I could never go on bc pills again. It was disheartening bc I have such awful periods. My general doctor was willing to put me on a mini-pill which does not contain estrogen. (Called Nora-be). I've had good luck with it. [ more ]
Scott FSometimes combination antibiotics work when one alone doesn’t. For me Cipro & Flagyl do the job nicely. Also, you don’t say if you’ve tried psyllium, but it makes a big difference for some of us. Back pain is tricky - sometimes it’s GI-related, and sometimes it’s an additional, separate problem. When I had a ruptured disc compress my spinal cord the pain was remarkable, and thankfully the (urgent) surgery was quite successful. One of the things that hurt the most at the time was trying... [ more ]
capperI had tried Cipro and one other (forget at the moment) through the years. Neither ever helped. And yes, Pouchitis, thank you SteveG for reminding me of the term and the issue that is most likely causing me grief. As far as my back issues, I am 100% certain that they are systematic and connected to my IBD issues from way back since my 2000 surgery. I also neglected to mention that when I arrived home for the winter break on December 20, I stepped on the scale and was 146lbs. My usual weight... [ more ]
SteveGI also tried Remicade, Humira and Entyvio for chronic pouchitis. And Aza, Stelara, Xeljanz. None of them helped me. Now I'm on chronic antibiotics, after two years of trying to take them only for short periods. My pouchitis symptoms are gone and I have a normal digestion for someone with a pouch. Have you tried antibiotics? You never mentioned them in your recent posts. [ 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 ]
Thora E. NorrisFirst of all Hamstring, any developments from intake of any supplements can’t be good at all. So, First of all, try getting a second opinion before taking the supplements any further. I've had one for years, and after going to chiropractic practice, I took a lot of medications but I wasn't able to recover my issue completely. It comes and goes all the time. Then I went to a chiropractor, and I must say that I'm much better now. I considered going to a physiotherapist at first, but I'm glad I... [ more ]
lovethatgreyHi Scott, Hi CTBarrister. thanks for your responses. Scott, he tried Metamucil and wow it worked great. Thank for the tip! CTBarrister he is aware of how important hydration is. He's taking Loperamide and drinks a lot and has not has an issue with hydration since except for when he tried the Benefiber and Banatrol. Not sure what exactly was causing the cramps but can only assume it was the supplements. Thanks [ more ]
CTBarristerThe muscle cramps are due to insufficient hydration, so he should also be looking at what he is doing to stay hydrated. [ more ]
LovelyCarrotFor sure I would form a relationship with a good GI. My quality of life is directly due to work my GI has done around medication and procedures for pouchitis, constrictions, blockages, adhesions. At the very least you want a GI who is familiar with your special requirements who can get on the phone with ER docs or other emergency medical personnel if you have issues necessitating a trip to the hospital. Which isn’t all that unusual unfortunately. We get dehydrated easily, are susceptible to... [ more ]
JJAI think I continued to see improvements for at least 2 years. I did have some surgery later on that damaged my sphincter and I found biofeedback to be helpful-basically kegels with feedback to help you know/learn you are doing them right and measure your gains. [ more ]
Scott FHi, @Mars . I don’t know if you’re doing anything besides the kegels (keep them up). I’d recommend two things for now: 1) try taking a dose of psyllium fiber with dinner, so the stool is less likely to be watery, and 2) consider Imodium or Lomotil at bedtime. It’s best to start one of these first, so you have some sense of how each one is working (or not). Good luck [ more ]
LovelyCarrotI did- actually an ultrasound showed it as they had me push while scanning. I’m sure a CT also works. I opted for surgery but you don’t have to, depends on how impactful it is to you. A blockage will also show on a CT as a bloated out section of your intestine. I’m sure you’ll get an answer either way. [ more ]
DJJ2019LovelyCarrot thanks. Did your CT show enough to warrant surgery? I'm wondering what to do if nothing shows up. Did you get surgery? [ more ]
LovelyCarrotIf it’s a blockage you’ll know it- very painful, often fairly acute, and you’ll feel bloated and likely somewhat nauseous. It certainly could be a hernia- I had an inguinal hernia with no bump or anything evident except pain radiating down my leg and testicle. It could be a lot of things honestly so it’s good you’re getting a CT! [ more ]
TaichitwinI'm in Houston as well. I have attended the support group in the past, and had a hard time relating as well. Please feel free to message me and we can discuss further. [ more ]
This GuyHey! I've been to the monthly Ostomy Support group a few times ( https://www.ostomyhouston.org/monthly-meetings.html ). It was definitely nice to be around others dealing with similar issues, but I found it difficult to relate to the vast majority of the people there. The majority of folks there were much older than me. Not a dealbreaker by any means, just not exactly what I was hoping for. Following this thread to see if there are any others I don't know about! [ more ]
Scott FI’ve been on Cipro daily since 2008. My tendons are fine, and my pouchitis is well controlled. I carefully experimented to find the lowest effective dose, to minimize the risk. I did have to add Flagyl about 6 years ago when Cipro alone stopped working adequately for me. A reasonable alternative would be to try one of the biologic medications. That’s certainly what I’ll do if Cipro+Flagyl stops working. Some people (or their doctors) prefer long term biologics to long term antibiotics, and... [ 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 ]
KatSydneyHi Ina. I had my takedown 7 years ago and as other posters mentioned I took things slow at the start - basically lots of long walks in the first month or so. My doctor then referred me to an Exercise Physiologist which was great cos he guided me on exercises I was able to do a couple of months after surgery. Re: lifting heavy weights, I do heavy weight exercises at the gym regularly (and I'd say my performance is no different to anyone else's). As long as your technique is good, I'm sure... [ more ]
InaThank you everyone for your feedback. You have no idea how much your responses mean to me! ❤️ I don’t feel so alone anymore. I’m just learning as I’m only 1 month into my last surgery. You guys give me hope & made my day! [ more ]
ValenHey @Ina ! I’m one year out from my surgery and had the same doubts as you once. I played sports for most of my life and was able to resume just like normal after healing. I personally waited 8 months, (I was really busy with school!) but could have easily started before that. Take your time to heal, start slowly. You will know when you are ready to start up again. Best of 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.
General Disclaimer
This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.
Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).
Confidentiality
Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.
CCFA
The Crohn's & Colitis Foundation of America, Philadelphia, Delaware Valley chapter, is located at 521 Bustleton Pike, Feasterville, PA, 19053. Tel: 215-396-9100
National CCFA headquarters are at, 396 Park Avenue South, 17th floor New York, New York 10016-8804 Tel: 212-685-3440 800-343-3637
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