Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsHelp! Need advice now!
Understanding possible outcomes from mucousectomy - help!
L Ljz
winter wish I had it done by Prof Nicholls he and Park pioneered the pouch (Prof Tekkis assisted him), so he was possibly the world best! He gave me a 50/50 chance of success. I still have it 9 years later [ more ]
Ljz Thanks Jan! still deciding if my condition bad enough to take surgical risk of possible permanent ileo. Don't know if the prolapse will get worse so may just live with it - not great and does limit me from doing things but minimal pain until I've reached 30+ BMs day or eaten wrong foods. Know no surgery is without risk, but had really hoped to improve my QOL for a few more years. Never easy decisions, though like many the first pouch was a no brainer because of how miserable I was/ we were! [ more ]
Jan Dollar Well, one thing to keep in mind is the fact that your complication is rather rare, so there's not a ton of data out there. Your doctor cannot give you odds because there just not enough data to state the odds one way or the other. As it usually is in these complex cases, it is not known exactly what needs to be done until they are in there and see it. This is why the different scenarios are presented to you. Unsettling as they may be, it is far worse to be assured you have an 80% or whatever... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch Obstructing BM, Enlarged Small Bowel... Cleveland Clinic GI
EG-BethEG-Beth
twinkie ❤️
JenJen I saw your post on another topic and again on this one about your impending trip to Cleveland. It sounds like you've had a rough road and I can certainly empathize with a lot of it. I am 47 and have had a 15 year nightmare with IBD/RA. I was diagnosed and treated the first several years in San Diego and then moved to the suburbs north of Detroit. I got significantly worse in 2010 when I had an emergency total colectomy and then followed with the j pouch in 2011. The pouch never functioned... [ more ]
EG-Beth Thank you for all the replies, I will answer more in a moment. I Just found out that I will be going to the Cleveland Clinic on Sep 7th. I was wondering if anyone knows of a cheap place to stay as the on campus wants $170 with discount. thanks [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
UC - J pouch surgery done in 1996 and now joint pain
H Holtons6
Brewbirds I developed arthritis about 5 years after JPouch surgery.(@25 yrs old) I literally woke up one more with an extremely swollen finger, took three doctors to understand what was going on. All blood work looked fine. It then 'spread' to other joints(knees, elbows) as years past. I had to eventually go on Enbrel. But it's very controlled. A RA doctor is definitely the next step. Good luck! [ more ]
Jan Dollar You may want to stop the meloxicam a couple of weeks before your rheumy appointment so that your symptoms are more recognizable. My rheumy measured the amount of separation in my low back when I bent over as far as I could. This measurement may not be accurate if you are on anti-inflammatories, and it could delay diagnosis. Jan [ more ]
Holtons6 Thanks for the information.I have had x-rays and no injury just mild tricartmemal joint degeneration. The one marker in the blood work that showed high shows that there is inflammation from what I have been researching. I am feeling better with the meloxicam and going back to working out and hope that will help also. Thanks again for your comments. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Yellow excess stools
CredCred
Jan Dollar Yes, I'd call my doc for a course of Flagyl or Cipro. Sounds exactly like pouchitis to me. If your GI is far away, he can place an order based on symptoms. If it does not work, you need to be see in person. How long since your last scope? My GI does not scope me every time I have symptoms, but I get scoped every 12-18 months. Jan [ more ]
Cred I have never had pouchitis that I know was that! [ more ]
Scott F This could be pouchitis, which is (usually) easily treated with a course of antibiotics. Have you had pouchitis before? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch/anal training... How???
mamaswansmamaswans
Former Member ❤️
Former Member Thanks for the explanation Scott. [ more ]
Scott F Metamucil thickens and bulks up the stool. Loperamide slows the gut. Some people will find that either will get them a comfortable result, but many will get a better result if they think about how these work. I take a bowel slower at bedtime, for example, when I mostly want to slow things down for a good night's sleep. [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch removal advice preparing for op
TorresTorres
Olive Oil Torres, I'm with you. I've had my J-pouch for 19 years and now ready for a permanent ostomy. I was later diagnosed as having Crohn's. I hope you get more answers from a surgeron...I went to Cleveland and couldn't get the surgeon to answer my questions. [ more ]
BillV Ljz, if your surgeon does the k pouch operation, that would be an alternative to an ileostomy. Hopefully, the mucosectomy will be successful and will give you the quality of life you desire. [ more ]
Ljz I am preparing for a mucosectomy due to prolapsing of pouch lining and a flap that developed. Surgeon hopes to do it transanally but may decide I need ileo, temporarily. He laid out so many possible outcomes yesterday that I'm overwhelmed. From simple mucosectomy to ileo to opening me up To complete mucousectomy, to redoing pouch to possibility of permanent ostomy. I know he wants me to realize all risks but has anyone else had these all laid out in front when planning a mucousectomy ? [ more ]
See all 22 replies...
J-Pouch ForumsHelp! Need advice now!
"BB" or "Apocalyptic Bum"
DarkwatersDarkwaters
Brooksy I have a small anal fissure that I deal with every couple of months...not really sure if that's what you're dealing with though. What I found helps clear it up (in a few days) is after every BM I soak a face cloth in hot water in the sink. When I'm done I wipe and then hold the warm face cloth on my bottom for a couple of minutes. I do that a few times. It helps get some blood flowing down there and relieves the discomfort and helps healing. [ more ]
Former Member Darkwaters........ Just after my takedown, I experienced similar experience as yourself, absolute agony, although there was no soreness to the skin between the cheeks. I got instant relief by applying a small pea size amount of ilex Protectant Paste to the tip of my finger and appying it slightly to the inside of the anus. I discovered some weeks later, that during takedown Surgery, what remains of my anal canal or where it once was, required dilation; I believe the dilation created anal... [ more ]
Winterberry Hello, Darkwaters. Have you seen your doctor to check for fissures? Fissures can make you feel like you have pieces of sharp glass rolling around inside, or razor blades coming out when you have a BM. And in between BMs there can be itching, spasms, and terrible burning. Sometimes with fissures you can see cut lines or cracks around the outside of the anus. If it is a fissure(s), do not strain or push as this will make it really worse. After rinsing the area every time with a bidet or squirt... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch Removal
D desisn00ps
Dunninator Adam, I took it to bring my UC under control before I was considering surgery. It worked for me with no side effects, But Only for8 months. Decided surgery was the best option at that point. [ more ]
Adam Foster hi all, I am 46 and I have had pouch for 23 yrs (acute UC) - previously odd bout of pouchitis which would respond to antibiotics. However last 3yrs the pouchitis has become refractory and I have had fistula related abcess surgery and multiple dilations of mid pouch stricture. I am now intolerant of the antibiotics that work cipro/clarythromicin and steroids have not worked - all the drugs I have taken make me feel pretty awful. I am functioning , and compared to some stories I have read on... [ more ]
GinLyn Looks like I'll be going down the same road sooner rather than later; hoping for a good surgery and recovery time, although I know it is a major surgery. At this point, I just want to be done. I am sad to lose my pouch, but the stupid fistulas have proved too much. Gin [ more ]
See all 25 replies...
J-Pouch ForumsHelp! Need advice now!
Removing pouch cause short bowel syndrome?
Olive OilOlive Oil
chiromancer I was somewhat concerned about this because during pouch formation, due to complications, I lost much more than the usual amount of small bowel. I wanted to maintain the max amount of intestine, as we all should. I had UC but this would be even more important with Crohns. When I asked the surgeon how he was going to do the disconnect /removal I would have lost more bowel, not just the pouch. Don't assume they will just disconnect the bowel at the pouch and stick the disconnected end through... [ more ]
BillV I had my j pouch removed and a BCIR constructed. Although a short segment of intestine was used to construct the new pouch, I have no signs of short bowel syndrome and now I watch my food intake to maintain a stable and healthy weight. A significant percentage of people who opt for a BCIR or k pouch have converted from a failed j pouch and have had very positive results. I would suggest that you get a second opinion on your condition. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Vitamins and POUCHITIS
Chad44Chad44
Winterberry Check the ingredients' label. The capsules -- the actual capsule itself -- could be made from ingredients you may be allergic to. Some vitamins have fillers or things listed under "non medicinal ingredients" and these things might be causing your problems. Some might even contain sugars or fillers. Check the labels on all your vitamins. [ more ]
Linguist Hi CHAD44, Do the supplements you take contain iron? Iron may not cause chronic pouchitis but it gives me a lot of trouble if I take it orally. I experience symtoms similar to pouchitis such as frequent bms, unbearable abdominal pain and cramps that do not resolve with Tylenol and / or Buscopan (an antispasmotic). The symptoms disappear only after the iron completely leaves my digestive system. However, my butt and pouch remain sore and irritated for a couple of days more. [ more ]
Scott F Vitamins don't cause pouchitis. Have you tried antioibiotics yet? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
spinal abcess
M Mr_pomade88
Mr_pomade88 So I got the contrast done and they didn't see any leaks. I went to get a second opinion and they did their own mri on me. Now I'm just waiting for their call for results and their next step. [ more ]
Jan Dollar This is not all that unusual. I had a presacral abscess and it was drained by an interventional radiologist, through the butt cheek, and that was over 20 years ago. The drain was left in place for about a month. No need for neurosurgery. Yours is a little higher, but in the same general area. There are a lot of layers between your pouch and the actual spinal column. I would get a second opinion from a different GI surgeon or interventional radiologist. You are entitled to one with even HMOs. Jan [ more ]
Mr_pomade88 Thanks for the reply billy. I didn't even know those two other procedures existed and I definitely will post updates. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Backed up over 5 weeks
G Giselle
Jan Dollar I am not sure whether a defacogram would show pelvic floor dysfunction, but I would think it would. I believe you are understanding motility correctly. The right surgeon would be one who has experience with your complications. That can be a tall order in some places! Jan [ more ]
Giselle Thank you Jan. I have done a Defectating proctogram. the impressions were that there are no fixed or dynamic obstruction, no significant abnormalities, minor barium leakage during baring down. i am having XR small bowel series next week. the idea is to confirm that it's the j-pouch is not contracting in spite that there are no visible reasons. Do I understand correctly that is what is called "motility". Is that the same as pseudo paralytic ? A re-do of the j-pouch would mean 2 major... [ more ]
Jan Dollar Well, if your remaining colon is not functioning properly, then it still will not function with a colostomy. You will likely need to irrigate the colon (like enemas) at least daily, in order to empty it. Plus, you will still need the laxatives and supplements. Maybe it is just your colonic j-pouch that has a structural defect, such as twisting or collapsing when you try to empty. This can happen with an ileal j-pouch too. A functional x-ray exam, called defacogram, can show these defects. If... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
After 20 years I'm losing my pouch
Olive OilOlive Oil
Mysticobra The end is really not as bad.... in fact. Let me put it this way. It's all good. The one thing everyone tries to avoid I have. And it's pretty good compared.... and I can compare...to suffering with no end in sight. Good luck. You sound prepared. I hope you have it as good as I did when you get over to this side. It can be wonderful. Just another way to poop. Richard. [ more ]
Olive Oil I have Crohn's and chronic problems with my pouch so it's the a two for one. I will have adhesions removed and have an ostomy at the same time. [ more ]
BillV Hi Olive Oil, I’m sorry to hear about the problems you have been having with your pouch. I don’t know about the current room accommodations at either Mayo or Cleveland, but the main consideration is the level of care you get there. Three years ago, I had to have my j pouch removed and I strongly wanted to avoid having an ileostomy. I was fortunate to find Dr. Ernest Rhenke in St. Petersburg, FL who gave me a BCIR, a procedure that does not require having an external bag with its associated... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
J pouch group???
MIKEEYMIKEEY
MIKEEY Thanks so much [ more ]
zeep Looked up CCFA.org and there seems to be a support group in the Beth Israel Phillips care center in Union Square. its not j-pouch specific but given broad IBD issues group, I'm sure j-pouch problems are frequent topics. you can find more info on their website for meeting times and address. [ more ]
MIKEEY Hello Winterberry- I will try all your suggestions and I so hope you are doing well. Thank you and God Bless, Michael [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Anal fistula.....
DN D. Nocerino
pammieskrh I also have an anal fistula for the past two years. Has anyone here had one repaired successfully? [ more ]
Burke I this last year have had a anal abcess and fistula which goes from the perianal abcess inside the anal canal and have had seton placement to drain it. This has brought on a new indications diagnosis of perianal crohns and so it has been recommended for me to start using Imuran and Humira. Have any of you had success with Humira for these issues and for pouchitis? your responses would be great. Thanks. " The LORD sustains him on his sickbed; in his illness you restore him to full health."... [ more ]
Jan Dollar Jen, you are a trooper! I probably would have given up on the j-pouch long ago with your issues. One day at a time, eh? Kids make it all worth it! Jan [ more ]
See all 28 replies...
J-Pouch ForumsHelp! Need advice now!
Traveling?
Edie A.Edie A.
Edie A. Thanks LJZ!! I'll only be there for about a week. My GI said the prednisone wasn't a cause for concern while I was at the hospital as he told me the dosing would not be too much for too long, I have been at 10 mg twice a day for two days and am supposed to go on 5 mg twice a day until I see him which would have to be after I come back. I have quite enough antibiotics for the trip though so there's no problem there! Thanks for the reply and I'll definitely be careful of what I eat and drink... [ more ]
Ljz Don't know how long you're traveling for, but I would hold off on Prednisone taper until you get back, unless you will be gone for months. If so, I would still wait til I arrived to do taper, and not taper again 3-4 days before return. Make sure to stay hydrated and carry your antibiotic with you, and maybe a second dose in case you need it. Try to watch your intake while there! good luck! [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
night time poo
L lab
Scott F This has been written about many times here. It might be best to start by searching for some of those posts. [ more ]
jonw Hi, You dont state how long you have had the J-Pouch or if it is for solids or wind or both (most likely). In my experience (22 years post J-Pouch) there is no definitive answer to this its just a matter of not eating or drinking too late in the evening. I personally find a probiotic yogurt on an evening helps me. I dont know if the probiotic or just the yogurt that helps. You could speak to your docs about things like charcole tablets to thicken things up and absorb the gas but be warned as... [ more ]
Sharon W Me too. I have finally gotten it thick enough to not have butt burn, but I'm still getting up every 30-40 minutes all night. I'm 8 weeks out of takedown. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
flex sigmoidoscopy
M MandiG
Wee sylv PSH, I feel your pain and can understand how you feel with all the uncertainty and doctors throwing words like "crohns" around. It's been a few months since your post, I'm not on the forums often, however I hope you are ok and are closer to a definitive diagnosis. May I also comment that I was impressed by your dignity and calmness when replying to a post from another member who did not appear to show you any empathy and seemed extremely dogmatic in their reply! I felt aggrieved for you just... [ more ]
CTBarrister Knowing that background certainly makes your feelings understandable. I had read your post as suggesting that it was the Crohn's diagnosis or possible diagnosis that had you freaking out, which led to my reply. In my years on this board I have seen an inordinate number of "I have Crohn's and The Sky Is Falling" posts, which honestly do not make much sense because they focus on a diagnosis that very likely cannot be confirmed and isn't necessarily accurate anyway, based on current medical... [ more ]
PSH CT. Relative to your statements of getting treated, you're right on all counts. That's actually the plan. I think it's probably also important to remember though that folks sometimes just need to get frustration and or fear of the unknown off their chest. Yes, much more than Chron's was discussed as possibilities, pouchitis, restricted blood flow, backwash, etc. but to have my G.I., notably a renowned professor of gastroenterology at Emory leaning that direction, but admitting we'd have to... [ more ]
See all 17 replies...
J-Pouch ForumsHelp! Need advice now!
Need advice,what could this be?
AH Aly Henderson
Aly Henderson Hey guys. Thanks for your replies. I ended up heading to the emergency room on Friday night and got admitted. After a scope, it turned out to be bad stomach flu that caused pouchitis (ouch). So they're starting me on an antibiotic that will hopefully rid my pouch of that nasty inflammation and get me able to drink water and get home ���� [ more ]
tulsamom Does sound like gallbladder. Have you noticed it happens more if you ear fatty or fried food? [ more ]
Jan Dollar The most common causes of the symptoms you describe are gastritis with or without ulcer or gallbladder troubles. That said, I would have sworn I had a hot gallbladder, with all my adominal pain and cramping after every meal. There was also a lot of gas and diarrhea. Turns out I just had severe pouchitis. Go figure... Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
need best doctor for pouch problems
H helene
Jeffsmom Oh surgeon at Weill cornell is Dr Shulka. We use him. Wonderful bed side manner snd the kindest doctor ive ever met. And he's a surgeon! Also Dr Milsome, who studied under Dr Remzi is also there. He works with Dr Shulka a lot. Milsome does not take insurance so dr shulka brings him in when dr shulka is dojng stuff on my son. [ more ]
Jeffsmom NYU is starting a great gastro program. Our GI left Weill Cornell to go there and now Dr Ramzi is going there. brian Bosworth is excellant. I believe he is the head of Gastro. If you go to the website as look up gastro, read their bios. We have to find a new one at Cornell because Dr Bosworth left. [ more ]
lauren972 Dr. Legnani - Saved my life Kornbluth Legnani & George Mds 1751 York Ave, New York, NY 10128 (212) 369-2490 [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
What could this be??
C Chickiwicks
temoty Sounds like a bowel obstruction. I've been to the ER for them several times. They've always eventually cleared on their own. Deep breathing for relaxation helps me a lot because it relaxes the bowels during this period. [ more ]
Scott F It sounds like you had a small bowel obstruction that fortunately cleared up on its own. They are most commonly caused by the bowel twisting around post-operative adhesions. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
No menstrual cycle after colectomy
S shoflo
shoflo Thanks I agree I'll start with the vitamin and exercise asap. How do I choose the right multivitamin? I have appointment this week and I'll request labs [ more ]
skn69 I don't think that there is a one size fits all cure but some general rules that can help. You need a really good multivitamin with essential minerals to support your whole system. Next, exercise works wonders on exhaustion and depression as well as on general joint and back pain. You need to have some blood work done...to see if you are anemic or suffering from any other deficiency. Anemia can lead to exhaustion, depression, insomnia, mood swings, aches and pains and even loss of cycle. By... [ more ]
shoflo THANKS JAN�� [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
2 weeks post takedown
E ekf
ekf Jan- I contacted my surgeon's PA after reading your response, and he was fine with putting me on Imodium after hearing that I was going ~20 times a day. Luckily I'm fing much better now (3 weeks out) going 8 or 9 times a day. Much more manageable to say the least! Winterberry- wow, thank you so much for the thoughtful and detailed reply! I am doing much better now than I was doing a week ago. I hope to eventually get down to 5 or 6 times a day like you. I am a college student, and I believe... [ more ]
Winterberry Hi, EKF. My reversal was in April. It will get better for you. Don't lose hope or be too discouraged. You are very early stage. My first two weeks with my j pouch went well with solid, formed stool, four times a day. I thought, wow, this is great, this is how it will be. Then I developed pouchitis three weeks in. Cipro, then flagyl helped. Like you, I spent most of my time in the bathroom or feeling I had to go every 10 minutes. Sometimes 15 times a day. Frustrating, depressing, worrying. I... [ more ]
Jan Dollar I guess that is an opinion that varies. My doc had me on Metamucil and Imodium before hospital discharge. But that was 21 years ago. Perhaps opinions have changed. That said, I bet his opinion would be different if HE was the one going 20 times a day! Seems pretty intolerable to me. Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Blockage or just constipated?
D Dunninator
Jan Dollar I agree. Some people are very sensitive to the effects of Imodium. Jan [ more ]
MeganE Hey Dunninator (thanks for your reply to my post a few days ago!) I guess because you took the Imodium and now things have slowed down a little too much that it might just be that and not a blockage, unless what is coming out is just water and the Imodium is a coincidence. Maybe have a warm bath and massage your belly and that might get things going. Hope you feel better soon [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
1 and a half weeks post takedown
taecktaeck
Winterberry Hi, Mamaswans. I use a Brondell bidet. Its a squirt bottle. It has an angled nozzle that lets the stream of water clean the right areas. And you control the temperature of the water, hot or cool. it is very easy and comfortable to use. It has an air-lock button on the bottom so that water always comes out no matter what angle you hold the bottle, upside down, sideways. It is available in specialty stores, but costs less on Amazon, around $14. I have seen them for $30. I started using this... [ more ]
mamaswans Regarding keeping the bottom clean... I've found saline wound wash spray that is great. I take it with me when I'm out, spraying it on tp and it helps it feel less like sandpaper. At home too, but spray straight on the area. It is a bit expensive, though. I've been trying to think of a solution. A conventional squirt bottle doesn't hit the right angle and a spray bottle is either too misty or too sharp a stream... [ more ]
taeck Sharon, Seeing the words it will get better give me such motivation and positive thoughts about the future with this crazy disease/procedure that we have all had done. Thank you Infact today was exactly 2wks and a day since I was released. I am actually feeling half way normal. I haven't taken oxycodone in 24 plus hours and had 3 square meals. The fissures and hemorrhoid actually feel like they may be healing. Not sure if it has anything to do with it but I began soaking in the tub 3 or 4... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Anal fissure treatments... Any advice?
mamaswansmamaswans
mamaswans CLWAKLEY: I do use sitz baths. They are effective for the moment and relax me right before bed. I do not have a bidet. And I haven't found any wipes that are flushable and safe for a septic tank. Have you? The Flexeril at bedtime helps the spasms that are apparently causing the fissures for about the first 2 hours of bedtime. Then I'm right back up. Sunday night was heaven - slept in my adjustable bed in recliner position - got a full 5 hours without interruption! But last night back to up... [ more ]
clwakley Have you tried sits baths? I use those and the ilex paste. I just fill my bowl that comes in the sits bath with water as warm as I can stand it and sit there reading until the water cools. Then an application of ilex paste keeps any further bowel movement from touching the area. I use wipes and a bidet also. [ more ]
mamaswans I used Calmospetine for some time but it is so stiff and sticky, it's hard to get off and it feels gunky. I use Benefiber and lomotil or Immodium. Meanwhile... The BLT cream has numbed the area around the fissure, but the fissure itself is inside, it is still excruciating! So hoping the Flexeril helps enough that I can sleep... Just hope it doesn't relax me into an accident! [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Fistula between j-pouch and abscess
T tshirt
Jeffsmom Maria, I don't know where you are being treated but I believe going back to the stoma is the best bet. And give it at least 9 months to a year. Do they know where your leak is? That was part of our problem. They knew it was there, but did t know where. Turned out it was in the back of the small intestine at the sticking line. Asamatosis? That means the connection. It was difficult to locate, took a long time. I don't remember all the tests that were done.. But there were a lot. Good luck, I... [ more ]
tshirt Hi Jeffsmom, Thank you so much for your reply. I'm so sorry to hear his fistula and abscess are back after all he has gone through. There are no easy answers for us are there? I guess I will have to go ahead with the stoma and hope that the fistula closes and doesn't recur. I'm not sure what else to do. Thanks, Maria [ more ]
Jeffsmom Maria, my son has had the same thing for the last 2 years. In January 2014 they discovered it. Put in a drain, but him on TPN for 8'weeks. Didn't work. In March of 15 he went back to an Ostomy. Shortly after that, he was diagnosed wi PSC so we had to change doctors. We moved over to Weill Cornell in NYC. New surgeon. He did lots of studies to see if the fistulia and abscess were going away. He did another drain. They did so much last summer. In the end, by November it appeared to have gone... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Blockages
L lmknox23
skn69 I had never had a blockage before 2008...after nearly 30 years with a pouch...then they started picking up speed...firstly just post op ileus...when the gut doesn't wake up immediately...then I started getting return blockages in the same spot...sometimes total blockages where I couldn't keep a drop or ice chip down and others where it could sip water and juice until it passed...fortunately it always passed within 24 hrs. I have had surgery to remove the blockage ( it was a loop of bowel... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Xifaxon
WhiteCorvetteWhiteCorvette
Scott F I'm very glad it worked for you, JJA! [ more ]
JJA Big thanks to Scott F for alerting me to the Xifaxan loyalty card! My copay went from $35 to $150 this year for this drug. I signed up for the card and today paid $0 for my Rx!!! The card will only cover up to $1000/yr but since I alternate with another antibiotic, this Rx will cost me nothing for the rest of the year!!! If you have insurance coverage for Xifaxan but a high (well even a low, I guess!) copay, go to the manufactuurer's website to get this card! It is valid through the end of... [ more ]
lauren972 I used it and had success. Have chronic Pouchitis and currently on Remicade too. Antibiotics don't work for me anymore so was given a course of Xifaxan since it doesn't get absorbed and stays in your system. So it works differently. good luck [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
What could I have?
Edie A.Edie A.
Edie A. Yeah I was prescribed some dexilant for the gastritis and I suppose it's helping, very slowly though as the nausea did leave, although, I still have discomfort by my stomach area. I started taking carafate for all the gastritis ulcers etc and that also seems to soothe and coat things in that department. As for the pouchitis, I had missed two doses (not periodically) and well it seems as if the blood has been wanting to come back. It's very weird because this morning I had very very loose... [ more ]
Scott F The gastritis is probably the cause of the nausea. If he hasn't given your anything for the gastritis the you might try Zantac (150 mg twice a day). That should clear it up in a few weeks. Best to check with the Doctor first, if he'll return your calls. [ more ]
Edie A. I'll ask my GI about why the canasa instead of antibiotic! He told me that the pouchitis wasn't bad at all and there are only some ulcers in there. It seems as if he is more concerned at the gastritis than the actual pouchitis. Things have not been easy these few days though because for some reason I always end up with loads of nausea at night. This is causing me to lose lots of sleep and makes it hard to keep the canasa in as it doesn't help me with the nausea! I had to go to the ER two... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Debilitating Chronic Muscle and Joint Pain and Losing Weight. Not making ANY progress! and need more QUALITY OF LIFE. Anyone else suffering like this?
JS Jersey Shore
skn69 Hi Jersey, I am so sorry. There are no words. But I do have some questions. Firstly, what in your opinion is the primary issue, the weight loss, the muscle loss or the pain? I know that they are intimately related but which one is the #1 concern? For the pain, I have found the only way to deal with it (but not cure it by any means) is to submerge myself in water. At home I spend a lot of time in the bath but while on vacation I spend 2-4hrs in the pool. Hot or cold, pool or sea, doesn't... [ more ]
BillV I had my BCIR surgery in April, 2013 and my surgeon was Dr. Ernest Rehnke in St. Petersburg, FL. After my consultation with Dr. Pemberton, I learned that they no longer do the k pouch at Mayo and have never done the BCIR. Cleveland Clinic does the k pouch surgery. Although I was disappointed with Dr. Pemberton’s recommendation for an ileo vs. a k pouch or BCIR (he said I was too old to get one, which is BS), he did a very good examination that confirmed that there was no cancer present. My... [ more ]
Jersey Shore Thats amazing Bill. God... You have been through a lot. How long ago was your conversion? Dr Pemberton did the surgery? Where you happy with Dr. Pemberton ? Are you happy with the results and the quality of life ? [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Post Pouchitis Symptoms
HC Happy Cakes
Scott F It's most likely that just one of the antioibiotics is making you feel lousy, and the other is just fine. But if they aren't working, it might be time to try another. I've been on Cipro and Flagyl for a few years, so the long term thing seems to be okay ***if*** you tolerate them. [ more ]
Happy Cakes Thank you so much everyone. I did do a stool sample to test for c-diff (waiting for results) and doc put me back on cipro and Flagyl again, 500 mg each 2x/day for 20 days. 5 days into 2nd round, still feeling punk, think maybe the antibotics are making me nauseated. Have call in for Zofran. (Trying to get this nonsense under control while enjoying my vacation camping "up north") I am a bit concerned to be on this load of antibotics for this long, not been through this either. [ more ]
RHolt I am so sorry this is happening to you, after 12 years without any pouchitis. Please let us know how you are. I hope you get back to normal soon. That is scary! [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Yale New Haven...j-pouch surgery?
MB Mountain Baker
CTB23 I am new to the j-pouch group, but have looked for information after being diagnosed with ulcerative colitis April 2015. After trying various meds. Including Prednisone, Lyalda, Lomotil and Remicade as well as hospitalization, blood transfusions, shingles, etc., we decided that it was time to consider surgery. At 61 I did not feel that I wanted to continue with meds. that we're not really effective for me. My sister also was diagnosed several years ago with UC and we had researched surgeons... [ more ]
CTBarrister Yes, his profile looks good, and I am glad you brought up this question because I live about a 5 minute drive away from Yale New Haven Hospital. Since the time I had my surgeries in NYC in the 1990s, my insurance situation has changed. Like your sister, if I ever need a surgery again, I will likely be required to use a CT surgeon. And Dr. Reddy might be the guy. So thank you for looking out for your sister because it made me aware of someone in my own backyard that I didn't even know about. [ more ]
Mountain Baker Thanks CT. Dr. Daddy's profile looks good. Theresa [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Can't poop- what could be causes?
E EmP
Alkovitch I agree, impaction is always a worry. If I hadn't 'been' for 24 hours I would be seriously worried. Long before that I would push fluids - juices mostly' and eat fruit that I know will dynamise the small bowel like grapes, plums and other fruits from past experience. I have never ever gone longer than 6 hours since surgery 17 years ago except for when I am asleep when a few trips to the loo to make sure all is quiet will allow me a good 6- hours sleep. If I want to time matters so as to... [ more ]
clz81 Passing gas is a good sign, but as Scott said, I would start pushing the fluids and some grape juice and staying off the solids until things sort themselves out. [ more ]
Scott F If you're not in pain then fluids and bathroom yoga may be sufficient. You probably should stop any slowers or thickeners in the meantime. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Blood in stool
D Dunninator
Jan Dollar Of course it depends on the amount of blood. But this is not too uncommon. Could be cuffitis. Not an urgent concern. Sometimes it is just irritation from all the stool coming through. If it is a lot of blood, it could be something more, like a burst blood vessel. If you are feeling lightheaded, rapid heart rate, or other symptoms of hemorrhage you should go to the ER. Jan [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Stick with ileostomy or try Jpouch?
DW debs w
debs w Hi Strange I have come up against this before with the CCG, if out of the area. Whether NHS or Private it seems. I was turned down over year and half ago for help with my Insomnia/Sleep issue, and was so desperate for help, and they turned me down! That's how serious they take not sleeping as a health problem! When I went to Docs, I asked if I could do the Choose and Book system, as apparently this is straightforward to do, but he said before this he must apply to the CCG for funding and... [ more ]
Former Member Debs, has you GP given you a reason as to why CCG funding must be applied for ? It's my belief that an aplication for CCG funding is only required when the treatment or proceedure you're seeking is not normally available on the NHS. Due to your current predicament and that you've had a " temporary" ileostomy for nearly six years; your the ideal patient for referral to St Marks The procedures and specialism from St Marks which you require is all available on the NHS I was initially referred... [ more ]
Former Member Yeah, your GP will have to inform St Marks of who you are under now and outline your condition and what you've experienced but your current surgeon will only become aware of this if St Marks has reason to gather more information from your current surgeon. Hospitals and Specialist prefer to gather all the necassary information from the patient once a referral is made, only the very basis of details are provided. St Marks will request copies of your Hospital Records and results of all Test... [ more ]
See all 45 replies...
J-Pouch ForumsHelp! Need advice now!
back/tailbone pain
P pouchE
diann744 The updated link for the Spondylitis Association is http://www.spondylitis.org/Learn-About-Spondylitis [ more ]
Jan Dollar Could be directly pouchitis related, or it could be inflammatory arthritis, related to ankylosing spondylitis (AS). Enteropathic arthritis is a spondyloarthropathy related to AS. If your pain is mostly in the upper buttocks, that is sacroiliac pain, and a hallmark of spondyloarthritis. But, you need this pain to persist for 3 months or more to be considered this disease. But, it wouldn't hurt to study up on this, in case this continues. http://www.spondylitis.org/about/overview.aspx I get... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
J-Pouch Revision Surgery-Losing Hope
N NancyD.
michhebe I've had my j-pouch in 1998 and was pretty good for 10 years or so then pouchitis more and more almost monthly the last year. Was going to have pouch removed but decided to try something first 6 months now) reduced sugar intake (most) not to feed the bad bacterias that in my mind at least (not scientific) might be causing the inflamation , taking B12 supplement (1200mcgr) daily even if my blood test always showed ok (read it could still be wrong and not show) vitamine D and use calmoseptine... [ more ]
tf Hi Nancy, I believe we all have been were u r at sometime or other during this journey. My surgeries for J pouch was in 2013. I felt like I went thru hell and back often. My hemoglobin is low and my dr advised b12. Some days I have zero energy. I get b12 injections which do help. Right now I'm thankful things r quite. But, just a few months ago I was having bleeding, pain & burning. I had a scope and pouchoscopy. Both drs. said no inflammation but the adhesions were very bad. I started... [ more ]
Ljz Nancy, how are you doing? I sent you a private message about docs in our area. Hoping Dr. Remzi or others at CC resolved your issue and that you are feeling stronger and perhaps gaining a little weight back. Did you have revision surgery already on your pouch? Hope you are well! laurie [ more ]
See all 28 replies...
J-Pouch ForumsHelp! Need advice now!
Tailbone Pain
W winnie
winnie Thanks Jan and Sharon! Going to doctor tomorrow. [ more ]
Jan Dollar Granted, abscess type complications are usually seen in the early months post op, but stranger things have happened. It easily could also be from adhesions that are getting more problematic over time. But, either way, it is good to rule out something more nefarious. Jan [ more ]
skn69 Ditto on what Jan said...it could be a slow, festering abscess or it could be something related to the sacroiliac...both would do well with a scan...it will allow the doctor to narrow down the list and decide what course of action to take...the sitting then more pain could be either an abscess, a cyst (ovarian but towards the back) or a sacroiliac problems...they all need different plans of attack...please do get it checked out. Sharon [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Clindamycin
chili123chili123
Jan Dollar I would take it if it the best antibiotic for your issue. Deal with side effects IF they occur. I am not sure that yogurt would make much of a difference one way or another. Jan [ more ]
Scott F Plenty of folks have had C diff with a pouch. IMO that's not a great reason to choose not to take clindamycin if your throat issue requires treatment. You will be more prone to develop C diff while on clindamycin, pouch or no pouch, but the vast majority of folks in that situation won't develop C diff. [ more ]
chili123 Sounds like c diff is biggest concern with this medicine......anyone had cdiff with a pouch? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Pain and throbbing after BM
P Panthermom
CeeF Disneynut, how long since your takedown? And at what point did you learun that your pouch was enlarged from straining? You're scaring me! [ more ]
Disneynut Don't strain!!! I just got back from the Cleveland Clinic and my pouch is twice the normal size and I can't empty completely and it's from straining. I have pain just like you are describing. I have to go to a PT for the next 6 months to hopefully improve this so I don't lose my pouch (surgeon said 40% of people who have the problem I do have to get an ostomy). I have had one visit with the PT and already I'm not in pain anymore. I bought a squatty potty and have learned to empty correctly. [ more ]
Vanessa Drink a lot of water and try to get more fiber, I not a fan of Metamucil but love benefiber it works better. I also have aquaphor everywhere , bathroom, purse, etc. Helps with irritation. Try to use wipes or water and blot don't wipe it irritates it. If the stools are very frequent, urges, light green, nothing staying in and constant pain it's pouchitis and need flagyl to to treat . Best of luck [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Please tell me it gets better
SW Sharon W
skn69 Sharon, Is there a dollar store anywhere near you? (I was playing with the grandkids yesterday and got an idea for you) I have found that with a little bit of imagination, a few dollars and a trip to the dollar store you can make just about anything. I would see if I could find a plastic bucket (here we call them sink liners because they don't have handles, are shallower than buckets and smaller), round or square depending on your body and comfort zone, an inflatable inner tube like the kind... [ more ]
lablover Sharon, It does get better. My husband is going on 22 years with his j-pouch. So much better than having colitis and the medication that sometimes made him feel worse than the disease. [ more ]
Itsanewworld Sharon. The squirt bottles are a must for me. The consistency of stools changing that some can feel uncomfortable and itchy. Therefore the immediate squirt from the bottle is instant relief. I keep two hand in case in squirt isn't enough. I'm 3 weeks out and I'm now where I feel I have good days and some not so good. I eat stuff to try to bulk the stool as I find when it is bulky, the stool doesn't irritate much when being released. [ more ]
See all 20 replies...
J-Pouch ForumsHelp! Need advice now!
bloated with gas
N new2thisstuff
Jan Dollar Just remember not to take any charcoal supplements with or within an hour or two of other medications or supplements. It will prevent absorption. Jan [ more ]
Centro Hi all first time on the forum for me. Like a lot of you I have had lots of trouble with gas after getting my j pouch . The thing that helps me a lot is a tiny homeopathic pill called Carbo veg .. It's a vegetable charcoal and it has been invaluable. Have a go and let me know whether you have as much success as I've had with it . [ more ]
Randi M Steve-love to know the answer to that..takedown was June 12th and I have gas all day that doesn't come alone..as soon as I get cleaned up from the last gas attack the next one comes..trying to figure out how the pouch works as most the bm's are coming w gas [ more ]
See all 11 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×