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J-Pouch ForumsGeneral Discussion
Pain urgency
Kline84Kline84
mgmt10 That's just crazy that he told you to wait til July for a scope. Obviously you have something going on there. Definatley call and insist they take a look-see. [ more ]
jeane Your symptoms are very similar to mine. I have chrinic cuffitis and pouchitis in my distal pouch due to an anastomotic structure. My pouch functions fine for the most part but my cuff and anal canal give me pain 24/7. May not be the case for you but a scope should reveal cause. Your emptying issues could be due to inflammation in the cuff and ATZ as I aski experience those symptoms. Unfortunately for me no meds are really working So I'm looking into pouch advancement after scope next month. [ more ]
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J-Pouch ForumsOstomy & Skin
You know you have an ostomy when...
bootstrapbootstrap
manders6 ...you look for shirts that are long and loose when shopping. ...you unconsciously put a hand over your bag to check if it's time to empty. (I found myself doing this even after I had my take-down for awhile! I've got my 4th temp ileostomy right now...) ...you buy the extra large, economy size bottle of loperamide (Imodium) and carry it everywhere with you. ...you have stopped wearing belts with pants. [ more ]
Jenmystique You want to create a barrier of some kind to keep the seatbelt off your stoma cause it is just "uncomfortable". A rude person who barely knows you (but loves to gossip) walks up to you at work and asks "do you have a BAG?" with a sneer, like it is any of their business and you hold up your purse and say "Yes! I got it on sale at Penney's. Isn't it cute?". [ more ]
hart155 you know you have an ostomy when... you'd rather empty your bag in a gas station restroom en route, where the smell will go un-noticed, than wait to get to your destination. [ more ]
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J-Pouch ForumsGeneral Discussion
Variety of issues
D duke_0518
magic30 Hi. Hey if you have fissures or hemorhoids...its real painful. Now I had both. And I didn't read the other replies so forgive any duplicates. But heres what I do that works... Ive done this since right after I had fissures at takedown and it was very painful at first. VERY MUCH. But it has lessoned and unless I eat something that bothers me I have virtually no pain now at a year and some months post take down. I have medical gloves, A and D ointment and Lidocaine prescribed. I only use the... [ more ]
ValB duke_0518, even though my pouch is old, i still remember those early days. you don't mention if you are on any kind of acid reflux medicine like nexium, or protonix. I wish we had had these back when. Talk to your doctor about something that will help reduce the acids...also, like subzeromambo noted, try to watch what you eat and when. Just a thought, but someone noted on another post yesterday about matzo crackers (?). Wonder if one of these a couple of hours before bedtime might help??? i... [ more ]
Subzeromambo I am so sorry you are going through the grinding broken glass sensation, sleep deprivation and the sphincter burning. I had the broken glass sensation and sphincter burning too. It was terrible. It started about a month after takedown. My doctor did not find a fissure. He diagnosed me with a type of nerve spasm. He prescribed a very low dose of valium whenever the pain started and half a dose of oxycodone (2.5 mg.)The valium relaxed the nerve spasm and the oxycodone helped with the burning... [ more ]
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J-Pouch ForumsGeneral Discussion
when i get old
magic30magic30
magic30 thanks for all the thoughtful replies and intimate stories. Appreciate this site so much [ more ]
CTBarrister In the early days of Alzheimer's Disease, my Grandfather knew something was wrong with him. He would take questions as very personal challenges, and when the answer would not readily come to him, he would start swearing a stream of profanities and say to me, "my [bleeping] head is full of marbles!" But you could keep Grandpa in good spirits by talking about the "good old days". He served in the US Navy during the 1920s, on the USS Oklahoma which was sunk in the Pearl Harbor Attack in 1941. [ more ]
skn69 In my French step-family the 'Mammie' (great grandma) was hospitalised at 93 for various ailements, I was in the same hospital for sepsis and a cystectomy...so I would pop up to visit her daily...the conversations were enlightening...she talked about the past (1920's-today), friends and family and told me that they all thought that she had altzhiemer's...but that she didn't, it just made life eaiser for her to allow them to think so...So while she was giving me elaborate receipes and telling... [ more ]
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J-Pouch ForumsGeneral Discussion
How often do those of you plus 5 years have scans?
MN Mark N
CTBarrister If you had cancer then it is a whole different ball game than everyone else.........it's even a different ballgame for those of us (like me) who had dysplasia, who are recommended for annual scoping. [ more ]
ValB Mark, i was getting a flex every year....this year my surgeon told me unless i am having problems, he is cutting me back to 1x every 2 years. The only time I have had a cT scan was when an ER doctor mistook my jpouch for a tumor (snicker)...he refused to listen when I tried to tell him it was a jpouch and refused to talk to my surgeon. If he is checking for cancer, then he just wants to be sure you are clear. [ more ]
Mark N I had early stage CC, runs in my family. Because of the genetic component we all got tested twice a year, colonoscope and six months later flex sig every year so they discoved mine early. I moved here from California, don't think they follow so closely after 3 or 5 years in California, maybe 'cause health care costs more in California? Oh well, if I ever get anything else, they will see that early too. [ more ]
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J-Pouch ForumsGeneral Discussion
surgeon in LA or Orange county area..Dr. Beart does not do the surgery any more
P PH
Mark N I think that Dr Le who practices at several OC area hospitals is terrific. He is gentle and kind and in my case where I had problems from a prior botched surgery, he did miraculously well/ I had two surgeons to0 co0mpare and even the post op care Dr Le provided was superior. I had no pain ever and 6 years or so since take down, no problems at all yet he stays in touch and if I ever have questions he calls me back promptly, treats me like a person and not just a dumb patient. Go see him... [ more ]
F-TOY-120 Try ucla los angeles ca, dr. Sac, very nice and patient, he listen to your concerns, very knowledgeable, he is the only one i will let cut me open, very gentle [ more ]
suebear I've heard very good things about Dr. Garza, and with Beart as an assistant, I don't think you can go wrong. Sue [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advice????
B beckysmom
beckysmom Thank you Jan, Sharon and Scott. There has been a lot of opinions on how to proceed. We are hoping that if this area needs to be dilated, that it can be done at that time and also a more definitive diagnosis can be made. [ more ]
Jan Dollar Surgeons cut and GIs ave a medical focus, so it is not too uncommon for there to be conflicting opinions on how best to proceed. For me, I like to use non-invasive methods for diagnosis before resorting to surgical exploration. So, the GI's approach appeals to me. Sure, it could come up as a dead end, but I'd go for that before more surgery. I also agree that biologics without a reasonable indication of an appropriate diagnosis doesn't make sense, especially since they could take up to 3... [ more ]
beckysmom Thank you Sharon. You have always been a source of inspiration for me. Procedure scheduled for April 2. [ more ]
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J-Pouch ForumsGeneral Discussion
Update
SpookySpooky
Jan Dollar Yes, I agree, the steady decline is concerning, but far from urgent. Transfusion would not be indicated until you were in the 70-80 range (most of us in the US have reference ranges of 13-15 as normal, and 7-8 as the transfusion range- just a different reference point). Anyway, your levels of anemia are considered mild at this point, so repeated lab studies can show the trend. I would expect that you'd need to drop below 90-95 before it would be considered more urgent. The good news is that... [ more ]
Spooky This GI is great. He's willing to work around the bureaucratic tape to try to get this done. My hemoglobin was 139 in December, 121 in January and now 113 (which incidentally is lower than it was after my step 3). My annual bloodwork from the past few years has had it between 130-145 range, so this is demonstrably low for me. But he did tell me today that it still isn't low enough (i.e. transfusion levels) to make this an urgent matter. Anyway, my hemoglobin at one point was 52 due to UC and... [ more ]
Jan Dollar Looks like your GI is on top of things and when they know they have a hurdle to deal with, most docs know how to manage it. It is not like they have to lie about your condition, but have to get the criteria to get you over the bureaucratic bar. And if you can't get into a shrink to help you cope, be sure to keep coming here so you can unload on friends who understand! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Not entirely impressed with my new GI.
K Kia
Kia Thanks, Jan. I will definitely keep that in mind and not make myself nuts over it, lol. Who knows, maybe I will get lucky and this whole pouchitis thing will fade away as a distant memory. I can hope and I do hope, particularly given how quickly I responded to flagyl. [ more ]
Jan Dollar The problem is, DS or not, VSL#3 is not PROVEN to be superior to other probiotics. It just has been studied in some good clinical studies for pouchitis, where most other probiotics have not. The result is that VSL#3 proved to be better than placebo, for maintenance and for mild pouchitis. So, that really does not get insurance companies excited, especially considering the cost. http://www.ncbi.nlm.nih.gov/pubmed/20556748 Bottom line, you may find that other probiotics might keep you in... [ more ]
Kia Yes, I believe you or someone else mentioned that previously. I faxed this request to the doc along with other specific requests bc things have gotten lost in translation with the secretary. All I got back was a generic letter from the GI at my 3/15 appt that she penned and instructed the office to send to me on 2/20!!! I never received that letter. I was told by the ins that they don't cover DS either so I would still have to appeal. She told me at my appt that she doesn't deal with ins... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery after J-pouch
G Gibs
kathy smith Wow! You ARE sort of unique. Don't worry about it. And if it happens, medical staff are used to it. I think that many times women who are delivering their wee ones experience this because they're bearing down so mightily. As Jan said, the anesthesia must slow things down. And they they start giving you pain medication after surgery which slows things further. But usually before elective surgery under general anesthesia (or General Anastasia as my friend calls it) you'll be reducing or... [ more ]
Jan Dollar Don't worry bout it. I've had a number of procedures, and was fine. Must have something to do with the anesthesia given, slowing the gut. Even when I had a cardiac cath procedure without general anesthesia, and had to stay on bedrest for 8 hours afterwards, I was fine. Must have been the awesome sedation given during the procedure. I did take extra Imodiun the morning of my procedures without a general anesthetic. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
1 year post takedown
G Gibs
lovedby2 My rectum was removed as well as all of my colon. I have a functioning Jpouch. I have a lot of pain still in there, at times I can't sit directly on my butt, more on one cheek is better. I was told by my surgeon that yes it can actively spread if you still have partial colon and rectum left after Jpouch. [ more ]
Gibs I guess overall I'm fortunate with my outcome. It's a little concerning about the disease spreading to the left behind remnants of colon/rectum, how common is this happening? Is it something that eventually happens to everyone? And if surgery is needed to remove what was left behind the first time, what kind of lifestyle are you left with? Is the j-pouch still functional without a rectal stump or do you have to go back to an ostemy bag? I don't think I could handle the bag again. [ more ]
lovedby2 Is it all of your rectum? I know from my 1st surgery to my 2 surgery my rectum became diseased and they had to remove it, attaching everything to a small stump. Then my takedown on the 3rd surgery.... Painful 2nd and 3rd surgeries, as far as recovery. I was also told by my Dr that if any mucosa was left behind it can carry the disease and cause bleeding. I was told at my last colonoscopy that a strip of mucosa was left. [ more ]
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J-Pouch ForumsGeneral Discussion
pseudo polyps
J johnjthompson
johnjthompson I have had the same doctor who scoped my j-pouch for eight years. It was a nurse who first told me I had pseudo polyps this time. I would guessed that my doctor never felt the need to call them pseudo polyps before because he had told me that these types of polyps found in the pouch would not likely become cancerous. So I never thought before that these polyps would ever become cancerous. [ more ]
Jan Dollar The type of polyps associated with UC are pseudopolyps, as opposed to the adenomatous polyps associated with precancer (the type that are on a stalk with precancerous cells in them). These are called pseudopolyps because they are not true polyps, but inflammatory tissue caused by the raised edges of ulceration and overgrowth of granulation tissue. So, no, these are not "fake" polyps and it is an actual medical term. John, I am not sure what sort of polyps your doctor found in the previous 8... [ more ]
CTBarrister I have had inflammatory polyps in the pouch. I have never heard the term "pseudo polyps" and don't really know what that means. The polyps I had were real, and were removed and biopsied. Pseudo generally means fake. Like for example, "pseudo-science" means a science that is not real and if your expert witness practices it, he gets hosed in court and disqualified as an expert. I see that term a lot in legal decisions. It means a faker and someone who is using a science that is not real. [ more ]
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J-Pouch ForumsGeneral Discussion
Stupid stupid fistula
Uc-DanielleUc-Danielle
F-TOY-120 Ment procedures oops [ more ]
F-TOY-120 I have a fistula, i got it 2008, tried many surgery and ricedures to get rid of it. It just wont go away, i have a seton in, its not a cutting seton, it just to keep the hole open so it can drain, i have had the seton for a year, and have not have any discomfort from the seton, it took awhile to get use to it. Now i am trying to deal with fatigue and and alasorbtion. My surgeon is dr. Sac at ucla in los angeles ca [ more ]
n/a Yeah! I saw a show where they were using goretex to close holes in kids' hearts (in Belarus after Chernobyl) and just had to wonder/whine - why not in a fistula?? Anywho, sorry you're still going through this, danielle. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch removal due to multiple health issues
Maggie MaeMaggie Mae
Cataja I gave up my j-pouch in '09 and went to an end ileo...I have asthema and chronic bronchitis...never had any docs tell me they were related... [ more ]
Jan Dollar It very well could be making you sick. You certainly would not be the first one with a failed pouch or a pouch that causes too many other problems. It is rare, but not unheard of. Unfortunately, it is difficult to know for sure. In the long run, I think your gut instincts are probably true. Jan [ more ]
Maggie Mae Thanks for all the info. I also believe my pouch is making me sick. I cannot prove or explain it. Just a gut feeling. [ more ]
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J-Pouch ForumsGeneral Discussion
Sciatic Nerve pain
DN D. Nocerino
Scott F The last time I had severe butt pain (probably piriformis syndrome) I tried prednisone on a lark, since it seemed like the nerve was inflamed. To my surprise it had a dramatic effect - I think I only took two doses. This is *not* conventional treatment, but I'm darn well going to try it again when I find myself crippled by a pain in the butt. It happens to me a couple of times a year. [ more ]
skn69 I've been having it for years...and generally I go to see a chiro who helps to relieve it and give me some exercises that keep it mostly at bay...but whenever I have to sit anywhere for a long time in an uncomfortable chair I gallops back (today at a friend's funeral...those chairs were not made for comfort)...It pulls right down to the foot...I usually use a set of silicon balls, about the size of baseballs that I work under the buttocks and the whole zone and then work up to a soccer ball... [ more ]
CeeeeCeeee Unfortunately, nothing relieved the discomfort for me like having an epidural did. I continue to have this pain about once or twice a year and just take myself into my anesthesiologist who specializes in pain relief. The injection takes about 15 minutes and I don't even need sedation, although it is available. I prefer no sedation so I can drive myself. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain/Anxiety Mgmt Tools to Supplement Medicinal Treatment
K Kia
Scott F For me the best solution is knowledge, even if it's simply a clear understanding of what's known vs. not known. If I can feel certain that I've got the right information and done the right analysis I'm much more comfortable. [ more ]
Jan Dollar Seems pretty close to my list, but although I consider myself spiritual, I'm not religious. Sort of a "hope there is a higher power helping guide the universe" thing, makes me feel less concerned about things I cannot control. Plus, being able to forgive others their foibles allows me to release the anger and stress related to that. Here are a couple of things I would add: I would add exercise as a major stress and pain reducer for me. My arthritic pain is always less after a turn on the... [ more ]
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J-Pouch ForumsGeneral Discussion
Symptoms of a pouch inlet stricture?
kiwiPouchnUSAkiwiPouchnUSA
kiwiPouchnUSA OK so I had the BE today. I leaped about a foot off the bed and let out a yelp when they stuck the foley in there....oh the things we have to endure. The quack said he couldn't see anything to be concerned about so that's great news for me. I'll celebrate with mashed spud and a steak tonight.... [ more ]
CTBarrister Good luck with it, kpUSA. Let us know how it goes. Unfortunately your self portrait reminds me of what I looked like with my NG tube. [ more ]
kiwiPouchnUSA I had the post operative ileus but only had to suffer the NG tube for 4 days and 4 nights and no food for 9 days - throughout which I wished I was dead. I've heard some say that this is medically induced torture - I understand. Not something to wish on your worst enemy. Self portrait attached - oh the memories! BE is Thursday morning so no tucker starts tomorrow morning. Wish me luck. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
trying to remain hopeful and positive
jenPrKrjenPrKr
rockandroller Lots of scar tissue is the norm for people who have had pouch surgery. Many of us have to go through fertility treatments or even surrogacy in attempts to have our own children, and some don't even want to consider those routes and adopt instead. If they didn't tell you there was something wrong with your uterus such as scar tissue in it that would prevent you from being able to carry to term, I would work on charting your cycles (try fertilityfriend.com) and try for another few months. If... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy
KR Katie R
jenPrKr Hello Katie! I have similar concerns....between my surgeries my right ovary and tube was disconnected. And I also have lots of scar tissue around the ovaries. I was told that it will be difficult to have children, but not impossible; Some of the reasoning is because of the internal damage from the surgeries but also because I stress out so easily, and because of that I will more than likely be on bed rest the majority of the pregnancy, and have to have a c-section. My husband and I have been... [ more ]
clz81 Here's my two cents based on your situation. I believe if you are feeling well, then why wait for something to go wrong. Take advantage of feeling well and hope for a healthy 9 months! However, if you are still dealing with a lot of meds and problems and feeling horrible, pregnancy is probably not something you want to jump into. You might have a totally wonderful, easy pregnancy, but a tough pregnancy can be really challenging even on the healthiest of people. If you are dealing with a ton... [ more ]
LoveLife PS: recent update: I spoke with the surgeon today, he knows my history just as well as the medicines. He said: 'I wouldn't be that worried. I am not God, though I sometimes would like to be, but based on my 25 years of experience I would say: go for it!' So my partner and I decided to wait another month to let my body restitute, and then go for it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So frustrated... STILL in pain
M magsroo
TE Marie I'm sorry that it sounded like you should have every test there was, or as Jan said "an over kill". That's not what I meant. I meant the tests indicated from the tests given regardless of the specialties. A CT scan or pains might indicate a gyno and a GI test. Patient history could also include neurological, psychological or other problems. I've had the run around of going from one specialist who says the problem I have isn't in their area it's in another specialty. I've gone to the other... [ more ]
Jan Dollar Margie, I am so sorry that you are getting this treatment from the very people who are supposed to be caring and helpful. You'd think that people working in the medical service field would have some natural empathy and compassion. But, my experience is that for whatever reason, sometimes people gravitate to exactly the wrong job for them. They not only lack compassion, but they actually seem to dislike people. Why on earth are they working in a people oriented job? I can understand being... [ more ]
magsroo Oh where to start... I guess when I get up the point that I feel I need pain meds, it is a real need. I do NOT like to ask for them. Drs have made me feel like I'm asking for something illegal and unnecessary so I have to be in bad shape to even ask. It's sad that its like that. But it doesn't help that these people in these medical offices are so apathetic. The nurse treated me like I was annoying her and said I'd just have to wait it out. Who talks to someone like that??? How would she... [ more ]
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J-Pouch ForumsPouchitis
no energy, lost weight
F F-TOY-120
F-TOY-120 Oh, ok my friend at work has it for his back, didnt know what it was called [ more ]
Jan Dollar Oh sorry. I guess you haven't tried it then, or you'd know what it is. It stands for Transcutaneal Electrical Nerve Stimulation. You wear little electrode patches where the pain is, and a pocket-sized electrical pulse generator sends a small current to the nerves that are perceiving the pain. It basically blocks some of the pain signal from reaching the brain. Anyway, it is a non-drug form of pain control and can help reduce the amount of opiates needed. It is useful when the pain area is... [ more ]
F-TOY-120 Not if i know what TENS is [ more ]
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J-Pouch ForumsOstomy & Skin
Considering permanent ileostomy
R Rhema
Rhema Steven, are the blockages that you experienced related to your j-pouch? I thought they are a risk of having any intestinal surgery. I assume you no longer have the blockages? [ more ]
Rhema Thank you for sharing your experiences, it's very helpful as I'm still very much in the 'exploring' stage and welcome all feedback in order to make an informed decision. Rhema [ more ]
Steven Muster Shari - almost identical to my experience the only difference is that I had the pouch operation in 2000, so I got 10 ten years out of it. But now I wish I had the stoma instead from 2000. The vomiting and pain was just plain awful! I felt that life was not worth living (for very short periods of time). There is light at the end of the tunnel and although I was offered a stoma a few years before, I refused thinking if I get through one more blockage I'd be okay [ more ]
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J-Pouch ForumsGeneral Discussion
Great update and a question
K Kia
Kia Doing much better today. I'm thinking the raisin bran mini muffins I went to town on were also a bad idea. Bran doesn't usually agree with me, but I ate a few of the muffins the day before and all was fine. *Sigh* Must remember all things in moderation. So grateful for another good day today, though!!!! [ more ]
CTBarrister I just ask my GI (who is also your GI) to email me the pics. I can't remember if he redacted my personal info or whether I did on the report, but the pics he emailed may have already come redacted. He is pretty good about doing this, but it usually takes him up to 2 weeks post procedure. Once I get the emailed pics, I save them in the "My Pictures" folder of my computer which runs Windows Vista. I then click on the Attachment feature of the Board (when you click on the edit button, it says... [ more ]
jeane I am having a scope next month for my chronic pouchitis and cuffitis. I will post pics. CT, can you provide the means how you do it? I will ask my GI to remove my personal information also. I think if anyone is afraid to leave them on long term for personal concerns we can always delete the posts after giving others on the board a bit of time to review the pictures. [ more ]
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J-Pouch ForumsHelp! Need advice now!
IVF next week - but now the doctor say: wait!!!
L LoveLife
LoveLife Thank you. Now here's my interesting update. I spoke with the surgeon today, he knows my history just as well as the medicines. He said: 'I wouldn't be that worried. I am not God, though I sometimes would like to be, but based on my 25 years of experience I would say: go for it!' So my partner and I decided to wait another month to let my body restitute, and then go for it. [ more ]
Scott F "GI system" means "gastrointestinal system." It's basically your stomach and intestines. Sorry for the confusion. [ more ]
JillM Also, I had an obstruction during my first pregnancy (I have a perm ileo after failed j-pouch) and nothing, I mean nothing, is scarier than them saying "you might need surgery" when you are 20 weeks pregnant. So you may want to be sure that the obstructions aren't going to be chronic, or see if there is some explanation for them. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal urgency and pain
F Fazz
Gizmo Sounds like it could be muscular. Your doctor can write you a prescription for physical therapy and you can go to a pelvic floor physical therapist. They will examine you and work on the issue. It could change your life. You can find a pelvic floor physical therapist near you by searching on the APTA (american physical therapy association) website under FIND A PT. [ more ]
Jan Dollar IPS usually has the same symptoms as pouchitis, but without inflammation. The symptoms are not acutely associated with bowel movements. Fissures have pain localized in the anus/sphincters that is associated with bowel movements. You can have more than one thing going on. Jan [ more ]
TE Marie Do you think it could possibly be IPS. Irritable Pouch Syndrome? I was diagnosed with this along with my cuffitis. I'll look for the paper written by the doctors at the Cleveland Clinic featuring Dr. Bo Shen about it and post the link. Here's the link discussing Pouchitis, Cuffitis and IPS: http://www.lerner.ccf.org/path...hen2002AmJGastro.pdf [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture questions
PK Paul Knaapen
Gizmo Strictures could be caused by muscle spasming. I have had a lot of success with trigger point dry needling, both for myself and I also perform this technique on patients to release spasms and tigger points in the pelvic floor muscles. I'm in Georgia, but there are other physical therapists around treating the pelvic floor that can help as well. [ more ]
lovedby2 I too have dealt with strictures. My GI has been doing dilations once a month and I do them myself inbetween whenever I start to feel things getting closed up in there. It has helped and I have noticed its staying open for longer periods... GI did say it would take several dialations before it would keep open. I would hesitate using anything other than my finger, only because I feel you need to feel how far your going in and flexibility, as my anastomosis is at an angle. [ more ]
JeffDC Strictures drive me crazy. My symptoms, when it reappears, are lots of back to back to back trips to the bathroom, with little output. That takes a toll on me, mentally and physically, especially at 3 AM. Then somehow, a gully washer empties me out. I have had a stricturoplasty where the doc made some incisions to try and fix the stricture, and one procedure to try and fix it. Both by the same surgeon who did my jpouch. Kia, I am also surprised you doc advised you to not mess with it. I... [ more ]
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J-Pouch ForumsPouchitis
Taking everything but the kitchensink
B badguts
TE Marie Great! I'm glad you got in so soon! I hope you don't live too far away. If they want to run tests will they do them over the weekend or have you come back on Monday? Whatever that is a quick appointment time! Please let us know how it goes! Good Luck! [ more ]
badguts I called the Mayo and got an appt in 2 weeks I go this friday.Time to do something.Wish me luck [ more ]
TE Marie I didn't have too wait to long when I went in last May. They still had me as an existing patient and I had not been there since 1998 for a 2nd opinion about my UC. Long way to say I hope you can get in without waiting a long time. Take care [ more ]
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J-Pouch ForumsGeneral Discussion
Blockage help?
JK Johnny K
Johnny K Oh, OK! That's even better. Thanks [ more ]
kathy smith Myofascial release is for helping to resolve the adhesions, helping to massage them out of existence I would guess. If it works, that means no more, or fewer blockages. So it is to improve the area and lessen the chances of getting blockages in the first place. kathy [ more ]
Johnny K Thanks for the responses. CTBarrister; I'm not sure how many I've had in the past 12 years, but my guess is anywhere from 4 to 8 blockages a year. Most clear by thermselves after the area gets massaged or I use some other "technique." I have had to go to the ER a couple times over the years. If I get so sick I vomit, then I go to the hospital. Normally I don't require a trip o the ER. ER trip or not a "good" blockage wipes me out for a couple days. A blockage that clears out quickly isn't... [ more ]
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J-Pouch ForumsGeneral Discussion
Flying and travel concerns
L lhh65
lhh65 Thank you for the input. Much appreciated. [ more ]
jeane My only suggestion would be to try the xifaxin a few days before leaving. I personally have not had good luck with this antibiotic in that it gives me severe diarrhea and I would not want you to deal with adverse affects the day of flying if you were to encounter them. As for flying on the plane...it is great as there is so much noise no one can hear you in the bathroom! Walk if you can and drink extra fluids as others have recommended. [ more ]
suebear I'm a veteran of many 12+ hour flights, most recently a 21 hour flight to SEAsia. I have no problems with my jpouch when flying and don't do anything different to prepare. I eat and drink the food and water provided on the plane and try to stay hydrated, as all coloned travelers do. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
If one has crohn's colitis, does colon removal make small bowel disease more likely?
B Badplumbing
jeane Badplumbing, All my scopes and symptoms over the years showed UC, as well as the promethius blood test. I had times where the scopes showed the ilieum was fine (most often) and a few times where there was inflammation. What concerned me was the last colectomy path that showed an area in the transverse that was disease free and maybe one other area also. The scope prior to my booking surgery showed ileitis and I questioned my surgeon on this and he did not seem concerned (same thing backwash... [ more ]
Inflamed&Untamed I don't know if it makes it "more likely" but Crohn's disease can later show up in different areas or worsen. So if you do end up with Crohn's colitis instead of UC then in the future it would be possible for the Crohn's to show up in other areas of the GI tract. [ more ]
Badplumbing Jeane- thanks, and sorry you have to endure so much pouchitis. My surgical consultant told me that pouchitis is substantially more frequent for those who had backwash ileitis- though I cannot find corroboration of this on pubmed. When they sliced and diced your colon, did they get any inklings of crohns there (sounds like they didnt, else they woukdnt have constructed the pouch). Hoping things improve for you. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
sports
M MJP79
suebear You should be fine. Go out and enjoy the second life you have been given! Sue [ more ]
CTBarrister I would tend to worry you might injure other body parts, especially if you are not in great hockey shape. There were a ton of injuries by NHL players after the lockout, due to not being in hockey shape. I would worry most about a groin injury, that demon injury that nails guys not in hockey shape, especially goalies. [ more ]
Blairisking Hey I'm just a little over three months past my final op'. And have just started back playing soccer. The only problems I have is when to eat beforehand. As gas and the need to go to the toilet kick in sometimes while playing (as a full game takes 90minutes) it can get really uncomfortable. I've tried eating three hours before hand (to give the food time to transit, works sometimes) and half an hour before hand. (Same thing) now I'm trying different foods to see how the affect is. If you... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Travelling by air days after surgery (to get home)
B Badplumbing
kathy smith Where are you having your surgery done? kathy [ more ]
Badplumbing Thanks, folks. Airport will be about a 75 minute drive before the flight too but will probably fork over for a good car service for that portion. Wife will be with me. [ more ]
Murray All I can say is dont eat air port food befor you fly. For me it caused a minor blockage that took 4 days to pass. this was 5 days after take down. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Tinidazole....
Akk3769Akk3769
clouseau I went to see Dr Shen last week after he had me on cipro and tintazole for a month, no side effects but it did help reduce the number of bowel movements substancially. After finding out I had a very serious bacteria called Pseudomonas aeruginosa he changed the tintazole to bactrim another antibiotic. [ more ]
TE Marie It's good to know about another antibiotic that is ok to take when we are prone to get c-diff! FYI fellow c-diff folks I've been taking s. boulardi along with VSL#3DS since my last round of c-diff. It is supposed to help prevent getting it. It's a prebiotioc (?). I ordered it from Amazon.com for $14 and refrigerated it after I opened it. There were several brands and they probably are available where vitamins are sold. [ more ]
Akk3769 I've taken about 4 doses of the Tinidazole and I haven't noticed any side effects. The number of bms are slightly lower and I haven't had too much abdomen cramping. I'm still having straining but hopefully that will go away. I've had cdiff 2 times before so that always scares me with antibiotics but he said that cdiff isn't a worry with this antibiotic. I just hope i can get into remission! [ more ]
See all 11 replies...
J-Pouch ForumsPouchitis
Vitamin D levels & Pouchitis
John95John95
clouseau I have to take 10,000 Vit D a day for my follicular lymphoma and it keeps it up around 65. This is the first time I heard about the gall stones, is that common with pouchitis and UC? [ more ]
Scott F JJA- Many of us have antibiotic-dependent pouchitis, but do well nonetheless. Have you tried different antibiotics? There are a number of good choices. [ more ]
JJA I never really heard of Vit D -pouchitis/IBD link until I learned I was deficient recently. I have had chronic refractory pouchitis for 2 years, and been treated with antibiotics and Entocort for 18 months. Each time I wean, I eventually flare, and now at max dose of Entocort plus a daily cort suppository, I barely teter on the edge of functionality. Scopes and labs show that compared to 18 months ago, disease severity has gone from mild-moderate to moderate, and 18 months ago I was managing... [ more ]
See all 26 replies...
J-Pouch ForumsHelp! Need advice now!
Dr Hurst Uof C medical center?????
B beckysmom
wolfpac tim They are a great hospital. I also had mine done with doctor Sac at Rush. I always hear great things abou U of C [ more ]
beckysmom Thank you both. We are besides ourselves. She just had a pouch revision in May 2012 and then an emergency strictureplasty done in Jan and now this at the same site. This is her old loop ostomy site. Dr. Rubin, her GI there, does not think it is crohns. This would be the third major surgery in less than 10 months. [ more ]
tertenpin I have heard of him as well. He is one of the best; I know someone who had their j-pouch done with him, and they had great things to say about him. I went with Dr. Saclarides at Rush, though, and he is awesome! He is at Loyola now (which is in Chicago, but just outside of the city). Great personality and knows his stuff! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Poor Liver Function
Shell WorrallShell Worrall
Shell Worrall Donna, Yes I still have my gall bladder. I've had it scanned a few times in the past and it's always looked perfectly healthy. It was fine with this last MRI scan too. I think my good cholesterol is ok, it's the bad cholesterol which is up. I am convinced that the upper right quadrant pain is when there is inflamation in my liver. The problem for me is that living on a small island means we have limited resourses and by the time I get the relevent tests the inflamation has subsided. I have... [ more ]
Donna H Shell, Do you still have your gall bladder? I had severe pain and indigestion some years ago and after an ultrasound, it was discovered my gall bladder had stones in it so it was removed. I have never had that pain again. It is interesting that you said a side effect of PSC is high cholesterol because mine is very, very low. My good cholesterol is off the charts and i don't really know what that means. I, too, will get the upper quandrant pain under my ribs. Sometimes it will not occur for... [ more ]
Shell Worrall Donna, I am on 250 mg or Ursodial 3 times a day so you've put my mind at rest about that. As for the support groups, well I joined one and posted on it but that was weeks ago and still no one has replied so I've given up. You're right, it is depressing when you read some of the stories but it's like this place. It doesn't give you a true statistic of how common or severe the disease can be. Only people who are having problems go there and I've seen no one there who isn't having symptoms. The... [ more ]
See all 30 replies...
J-Pouch ForumsGeneral Discussion
Gastroscopy
L Lu31
Lu31 That doesn't sound good. I don't have much family don't want to make my dad skip work for it. oh well, will figure it out..and see if he even wants to do the procedure. Jan...I think I need to eat normal to see if my stomach is actually healed from the tecta by Thursday as it's not a fair test if I'm just eating bland small meals. Murray, your comment made me laugh. Doesn't sound like such a relaxing procedure tha tyou can just relax and sleep through it. Good way to do it though. :-) [ more ]
Murray I'v had 5. I sleep through them. I had some one pick me up the first time after that I make my own way home. Unless you have a very very very strong gag reflex you shouldent have anny issues. [ more ]
CTBarrister Jan is right about you needing to get a ride or an escort. When I get the "conscious sedation", they make sure I have a ride, and they actually call the person picking me up to confirm that they can come and get me. I realize Canada has different liability laws (and no fault if you live in Quebec), but the GI does not want to be responsible when you walk in front of a truck in a groggy state, get flattened and your Estate sues for wrongful death. It's not going to be allowed to happen. You... [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Nothing but trouble since connection surgery...losing weight rapidly..read on
P Pixiegirl3650
Jan Dollar What concerns me is that this may not be pouch related per se, meaning just because these symptoms began after your pouch surgery, it does not mean the issue is with your pouch. I would not be surprised if it is adhesions, and not your pouch, that are causing the symptoms. Adhesions would not show up on the CT unless they were causing enough of an obstruction to dilate the intestines. The problem is that surgical release is pretty much your only answer. I presume you have tried Pepto Bismol? [ more ]
Pixiegirl3650 My surgeon hasnt been helpful at all. I have every otc gas relief stuff. I thought relieves means takes away...but w me it just moves it around. I was in the er yesterday. I do have slight pouchitis and am on flagyl. My blood pressure was low. They did a ct scan and the contrast made my insides so horrid and it kept flying out over and over. I even try cutting myself off from eating and drinking by 7ish. Nothings working. Granted the pain doesnt last all day but only when i eat. I just dont... [ more ]
vstRN Sorry you are going through this. Just another thought, has your GI ruled out a bacteria overgrowth. I had such painful cramping and gas that I couldn't release not too long after my takedown. 2 weeks on Xifaxin made a huge difference for that (although I have so many other different problems I'm dealing with. Good luck, I know it is hard [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
something new for bacteria etc..
R Rebe0505
SteveRM I found this on the net. AST 120 is a carbon absorbant. Seems Dr. Shen was part of the study. I think it just received orphan drug status by the FDA March 2013. Same concept about charcoal and sounds promising. http://www.ocerainc.com/conten.../releases/101507.htm [ more ]
skn69 Been doing it my whole life including since I have had my pouch (+33yrs)...my pouch love the charcoal...my GP gave me charcoal tablets when my Galbladder was acting up for the first time 20 yrs ago...she added artichoke extract and it did wonders for me...whenever I have an upset pouch I naturally eat burnt toast...not completely black but slightly burnt around the edges...it absorbs the bacteria and does the trick...no bad side effects (unless you count some rather dark stool)... Sharon [ more ]
SteveRM Just wondering how the charcoal affects the pouch as the pouch as far irritation. Anybody tried it yet? [ more ]
See all 14 replies...

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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.

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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).

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