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J-Pouch ForumsGeneral Discussion
not enough water
SH shawne h
Savannah I drink lots of plain hot water. I have a good jolt of coffee in the morning and then no more caffeine. I just try to keep drinking all day. Sometimes it helps me to drink a full glass of water before I get out of bed. I know what you mean about wanting to keep things moving. I don't worry about frequency of trips to the bathroom very much but I do worry when it's hard to empty or I even have the feeling of being blocked up. That is so uncomfortable and my belly swells like I swallowed a ... [ more ]
Shainy drink some coffee [ more ]
Pixie I have this problem with my pouch too. If things get too thick I find it very difficult/uncomfortable to empty my pouch. I drink a lot of water throughout the day now, I find that if I drink small amounts at a time then I don't have to pee as often as if I drink an entire glass of water at once. I have a water bottle with me at all times and just drink drink drink. When my pouch was new I would sometimes drink a bit of warm prune juice to empty things out. Green tea works for me as well. On... [ more ]
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J-Pouch ForumsGeneral Discussion
Bougie Dilation for Stricture
J jpouchmike
BillV I was one of the first at Mayo Clinic to have an IIAP (ilium sewn directly to the anal canal with no pouch). When the storage area did not develop as expected, my surgeon had me insert a Foley catheter a couple of times a day and inflate the balloon at the end. The intent was to expand the ilium. This was done at home by myself after my surgeon instructed me by phone. While this helped somewhat, I ultimately had another surgery to create a pouch. Your situation is different than mine, but... [ more ]
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J-Pouch ForumsGeneral Discussion
New med question
M Megals
DairyAirRN Got the white paper from ASCRS meeting last weekend. Going to have to study up on it a bit more. Was hoping some of you guys could offer some first hand info. [ more ]
Megals It's a serum-derived bovine immunoglobulin/protein isolate (SBI), and is made up of beef proteins. It's supposed to help better absorb nutrients and thicken the stool. But pretty much the only info I could find about it was on the drug's website. I work in a hospital pharmacy and no one there has even heard of it. Was hoping someone here had some experience with it. [ more ]
Lesandiego Here is what I found.... prescription medical food product for the management of diarrhea-predominant irritable bowel syndrome http://www.enteragam.com/ [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro and Hair loss !
D Dbone
wsh6745 This post is perfect timing for me. I just noticed hair loss starting last week and I haven't had that trouble since my last major flare up with UC; however I just finished a two week prescription of Cipro. This is the first time I have had this medication and it never occurred to me until now that it could have caused it. I was trying to figure out what was going on but I think you have solved it for me. Now that I have stopped the Cipro, I bet the hair loss will stop. [ more ]
Dbone Thanks for your replys , I will get my iron checked to see what the levels and it could be a number of other things causing this including just old age . Thanks [ more ]
Rebe0505 have dr. check your iron..my hairdresser noticed some hair loss(but was not on cipro!)my dermatologist said my iron was 31 in normal range but low side suggested i take iron to bring number s up to 50.. however,hair normal now after about 1 month of iron but now concerned supplements as per julies thread may be causing my diet to not be working..yikes! if the iron helps your hair loss ..and your numbers are low ..we can just start to include more foods supply iron instead of supplements.. [ more ]
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J-Pouch ForumsGeneral Discussion
Will Prednisolone be prescribed for J pouch Surgery ?
FM Former Member
Jan Dollar You are correct. In those situations, it is used to reduce the inflammation. Since you do not currently have active inflammatory disease, you are not needing it. It is just that steroid use during surgery is for a different purpose, AND it is ONLY for those with a history of long term steroid use. I would rather never say never, though, because some people do indeed require steroids after surgery with their j-pouch. But, that is only after a long bout of pouchitis that is not responsive to... [ more ]
Former Member Thanks for the very detailed replies. Prior to the creation of my ileostomy whenever I had an UC flare up, I was prescribed oral Prednisolone, when this didn't work, I got IV steroids. I believed such medication was administered to reduce the inflammation. As I'm currently not prescribed medication to treat UC; after surgery I would rather remain so. [ more ]
Jan Dollar It all depends on how long and at what dose you were on previously. If you have been off steroids for a year or more, you would not need them during surgery. But, there is controversy about giving perioperative steroids in those who have stopped taking them 6-12 months before surgery. After 10 years, I doubt you would get steroids. The dosing is not to prevent inflammation, but to prevent dangerous shock during surgery. Cortisol is a stress hormone, and surgery is definitely stress on the... [ more ]
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J-Pouch ForumsGeneral Discussion
Private messaging
Uc-DanielleUc-Danielle
Jan Dollar Danielle- are you talking about the tabs at the top of the forums, where there is a new tab indicating a new PM? Sometimes there can be a reply to an old thread that you never opened, and this will keep the flag showing. That happens to me sometimes where I get a short reply like "Thanks!" That I read in the email notification and do not follow the link to open the message because I did not intend to reply again. Once it drops down to the bottom of the page, or the next page, it can be easy... [ more ]
Jan Dollar Not sure what you mean, but if you click on the "Go" tab, then "Personal Zone," then "Private Messaging," you'll see a list of all your messages. There may be several or many pages. Just like in the forums, there will be a highlight next to any with unread messages. You have to open it in order for the flag to go away. I have experienced some delays in the flag going away. Jan [ more ]
Uc-Danielle It's the last option where you can chose what to do. Like a new post or reply [ more ]
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J-Pouch ForumsGeneral Discussion
going from 10 times a day to basically nothing, very concerned
Holly MHolly M
Bebekspor That's great to hear! Glad things are moving for you again. Katie [ more ]
Holly M I am happy to say my system "woke up". I have NO idea what caused this slowdown but I have def. cut back on my red meat intake thinking that I may have been eating too much. I told my husband I will never complain about going to the bathroom up to 10 times a day !! (I think he wants that in writing) [ more ]
Holly M I have a pouch scope set up for May 27th. Hoping it shows what the "slow down" is. [ more ]
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J-Pouch ForumsGeneral Discussion
Diagnosis advice please
T Traveller
Sonja6 I don't know if this will really help but... I have had IPS for 10 years. The pathologists are baffled by the amount of bacterial overgrowth that goes down in my pouch. Cipro is the only pharmaceutical that calms it down. But I have this horrible fear of becoming immune to it. So I only take it when I can hardly stand the pain any longer. For me, I know stress is a huge trigger. And unfortunately I have a extremely stressful job that I'm beginning to hate. Anyways I try to keep my stress... [ more ]
Traveller Thanks Jan I am currently treating with pentasa orally hbut not going too well. It has only been 5 days so might be adjusting, but the anus area is quite sore after each BM. Frequency is up and I am tired a lot. There is no fissure so rule that out. I'll check out the sticky article. Thanks [ more ]
Jan Dollar Sounds like you have a chronic anal fissure or anal irritation. Also, IPS (irritable pouch syndrome) is pretty common. It is treated essentially the same as IBS. It is functional disorder, not a physical problem. Although, recent articles indicate there may be a relationship between bacterial overgrowth and IBS. This would support the fact that Cipro seems to help calm your symptoms. Both IPS and bacterial overgrowth would not have any physical evidence during scoping. Have you checked out... [ more ]
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J-Pouch ForumsGeneral Discussion
Self dilation
V vstRN
JeffDC It depends on how far in the stricture is. Can you get to the closure with your finger or is it past that point? Your doc should be able to tell you. If not, you will know when you hit a brick wall and/ or it hurts like a $%#$%^. Hello, stricture. If you can't reach it, you would likely need to buy a dilator. PM me and I can send you some info on what to do/how I did mine (dilator). [ more ]
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J-Pouch ForumsGeneral Discussion
4, 6, 8, 10 times a day...... ?
FM Former Member
Ikh at the moment, my pattern is: once at night, once after waking up, once after or before the lunch, once after or before the dinner, and sometimes after before bedtime. so, 4/5 per 24h. Have to say that I prefer to empty regurarly although many times, I could "keep" it more, but had experienced some negative issue when retaining so I've decided to increase my bathroom visits. The cool things are that at the moment, I can actually control and decided when to go, and that I have no hours in the... [ more ]
mgmt10 I go 4-6x a day in a 24 hour period. Some days it can be more but that's the average. I go once in the AM when I wake up then usually not again until 3 or 4:00 in the afternoon. Then it's usually another 3 or 4 times until bed time. Some nights I have to do the middle of the night trip but not all the time. [ more ]
Monkeyme Hi Strange no of BMs you will find are very variable between pouchies... I generally don't go much during the day (maybe once after I've woken up)then most of my visits are between 4pm and 7pm ....I know of a few other pouchies who have a similar pattern to this who have a quiet pouch during the day and then most of their visits late pm/early eve.....I find emptying my pouch far less hassle than emptying a bag....if you are changing your bag each time it's full am sure u will found pouch... [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding after J Pouch surgery
S Shainy
Ikh In my case it wasn't mucus, just some "dirty liquids" sometimes, I'd say once a day... rarely I saw "small pieces of digested foods" (I suppose when I left the bag to fill too much, so that the compound enter the loop ileo)... but everyone is different... My surgeon said that the more the pouch was "active" in that way (and yours too), the better was, and one must be much more worried if nothing happens; the pouch is living healthy tissue, so it's normal it discharges intestinal juices and... [ more ]
Shainy yes I have the loop ileostomy. with the end ileostomy after stage 1 I regularly got rectal discharge of blood and mucus but it was controlled. This time I have felt the need to go to the toilet and tried once, nothing came out, then last night it seems as you have said, to have woken a little with the blood coming out. I spoke to the stoma nurse, she said nothing to be concerned about, you can get fresh blood, old blood and stool come out from the pouch, but as you have said chronic bleeding... [ more ]
Ikh You have a temporary ostomy haven't you? so stools are not passing through your pouch (or at least only a minimal part pass if your bag is full and the stool will enter the pouch hole), so the blood is probably something not to be worried, as it could be simply your pouch "waking up" after the trauma, and it needs much more time to settle, and to heal. That said, if you will notice more and more blood (actually, it's NOT normal a chronic bleeding after the second stage), you must go to your... [ more ]
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J-Pouch ForumsGeneral Discussion
FODMAPS and lack of Large Intestine...
RJG-RossRJG-Ross
RJG-Ross Hi Rachel. You can be diagnosed negative for Celiac Disease and still have gluten intollerance or wheat allergies... Wheat also offers 2 other proteins that cause digestive issues other than gluten... It's interesting about apples; I spent most of my life avoiding them. First because I didn't like the skin (just as I didn't like the crust of bread as a child). And then I noticed eating apples on an empty stomach caused horrible cramping and belching... I loved apple cider as a child. [ more ]
rachelraven Trial and error. That's what it is! I did the FODMAP elimination and reintroduction, and found some triggers. What was odd is that the foods that I find as "triggers," I've been avoiding them instinctively anyway (beans (galactans) and fructose (apples, pears) and fructans (wheat). I HAVE found, in doing the diet, that wheat IS a trigger for me. I did have some lab Celiac numbers come back as positive, but by biopsy, I don't have Celiac disease. So I'm not 100% sure that I'm bothered by the... [ more ]
RJG-Ross Thanks Scott. Your thoughtful and well-written response was greatly appreciated; like reading the articles I've been reading for a while; at the moment Omega 6 fatty acids and inflamation (Grapeseed oil etc versus saturated fats--animal fats etc). The research is fascinating. But, it doesn't remove the headache of trying to understand and trying to balance diets etc... Plus, what seems like a lot of very well intentioned information suddenly causes warning lights to switch on questioning... [ more ]
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J-Pouch ForumsGeneral Discussion
Keyhole or Open Surgery.....?
FM Former Member
Former Member Thanks Shainy and everyone else. I've prepared myself for surgery and been imagining that within 6 months I wont have the bag, so that alone is steering towards open surgery.. Although not completely decided, I don't fancy waiting till the end of the year for Surgery. I hoped to be on the road to a complete recovery by next year.. [ more ]
Shainy and there is the chance that laparascopic surgery may have to turn into open surgery during the operation if they are restricted in any way.. [ more ]
Shainy the risks that you are concerned about are the same. the major differences are the recovery time, scarring, adhesions etc.... [ more ]
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J-Pouch ForumsGeneral Discussion
Could continuous straining lead to chronic blood drops?
I Ikh
Jan Dollar Ah, that makes sense. Thanks for clarifying. CRP is good for monitoring treatment effectiveness. I did mot know you had serial readings. If you had a rectal exam in the recent past, then I think you can rely on it. Like you say, this may well be residual from that time, and just taking longer than you expected to resolve. As long as it is trending in the right direction, it is OK if it is slow. Good luck! Jan [ more ]
Ikh Jan you're right, but considering that when I was hospitalized one month ago, my CRP levels were 36, and 22 days ago (when I came back home) they were 14, and I was really haveing massive bleeding, I expected that, if still bleeding a bit, the CRP wasn't normalized, indeed they are. I think that CRP is the best inflammation marker, in my case never failed, when I'm good CRP is good, when I'm not good CRP is not good, and at the moment I'm good, apart for this small bleeding. Moreover I was... [ more ]
Jan Dollar Regardless, all it would take is a tiny amount to become inflamed, or even just the suture line. Blood tests will not indicate this unless you are deficient. CRP is not an accurate measure of inflammation. You simply need to be examined. If not a scope, then at least a digital exam, feeling for signs of inflammation or stricture. The fact that you are bleeding on a regular basis means there is something amiss. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Fibromyalgia? Lupus? Any help out there?
L LisaT
cassiecass Morning Lisa Hormones control the body.Here is a weblink on menopause http://www.menopause.org/ As far as Thyroid no such thing as normal.Obtain your lab reports and review them. If your lab values are above 3 you should look into it more.Few weeks back my Gastro said oh your Thyroid labs look great .Sorry DR You Are wrong I am hypothyroid.according to the American Association of Clinical Endocrinologist and the ATA. He looked at me. My Endo MD immediately upped my thyroid hormone with those... [ more ]
LisaT I've read quite a bit on fibromyalgia and my symptoms seem to be right on. My last blood work in April showed a normal thyroid. I am 52 and I've ALWAYS believed that menopause has had something to do with all of this. The symptoms began at the same time. I've read about women who get pregnant and have their first flare or the other way around. Others have very serious recurrences while pregnant or just after the baby is born. Has anyone read anything about menopause affecting us? My doctor... [ more ]
cassiecass Just another thought Have Mds discuss pains in back related to adhesions.Adhesions can do alot to us. Also I dont know your age but have they looked at you for menopause.Menopause can have a great impact on a women's body. Cassiecass [ more ]
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J-Pouch ForumsGeneral Discussion
C.Diff & Probiotics
TE MarieTE Marie
TinCan Not that I have any special insight, but I always take probiotics (vsl#3 ds and florastor) while taking antibiotics (which is all the time now). I think it makes me feel better in general and hopefully will keep the c. diff at bay. [ more ]
TE Marie Probiotics won't cure c.diff, I just think they are making me feel better. I should have worded that better Rebecca. Flagyl is the pitts! I was of the opinion that it was better to go off of probiotics while on antibiotics. I use VSL#3DS and s.boulardii all the time and now will continue them while on antibiotics. VSL#3 instructions say to take it 3-4 hours in-between the antibiotic. [ more ]
Rebe0505 my dark computer insists upon changing the word destroy to distorted..yikes! [ more ]
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J-Pouch ForumsGeneral Discussion
how sore is too sore?
GinLynGinLyn
Jaypea The symptoms you describe could be dehydration, infection or low hemoglobin. You need to,get this checked out very quickly. Might I suggest that for 48 hours you meticulously document everything you do, including naps. You will have a better idea of what and how much you are drinking as well as food intake, pouch output, and level,of fatigue. Armed with this data you will have something concrete to present to your doctor rather than just a general "I feel sick and tired" Now, off you go,to... [ more ]
TE Marie GinLyn, You know you have an infection in your body and you feel worse as time goes by. Your doctor doesn't know this unless you tell him/her. I didn't speak up loud enough when I had a drainage under my incision from my first surgery and ended up with a 2" deep by 2" long and inch wide hole in my abdomen right below my belly button that I had to pack for months after my take down surgery. I should have gone into the surgeon's office instead of calling and telling them it was draining. A... [ more ]
GinLyn Ah, Sharon! I think I do need to up my fluid intake; it has been quite warm here this week and although I have been being careful, perhaps I am not drinking quite enough. I am so BAD at waiting... Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro and teeth? Or is it the disease?
skn69skn69
skn69 Thanks Rachael, ok so I have 4 out of 6 on the list! Saw the dentist today ( thank goodness she is an American dentist who knows how to do a real cleanning...)and has told me that there is a lot of inflamation (what else is new?)and cracked teeth (from clenching during flares of pain)... The gift that keeps on giving. Now I have to worry about mouth and gum health along with the rest. yuck Sharon [ more ]
rachelraven Factors that increase thrush are: Being in poor health Being very old or very young Having an HIV infection or AIDS Long-term use or high dose antibiotics Receiving chemotherapy or drugs that weaken the immune system Taking steroid medications I'm sure the Cipro doesn't help! It usually gives me a vaginal yeast infection, but I've never had thrush. [ more ]
rachelraven I'm hanging in there. Every day a new adventure, but cutting out almost all wheat products has helped me feel better. I'm not so sure it's the gluten part or the sugar part that bloats me, though. Regardless, it is helping. [ more ]
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J-Pouch ForumsGeneral Discussion
Traveling to China: Bathroom Tips
Olive OilOlive Oil
nbm The hotels we stayed at stocked evian in the rooms and hotel shops. IT was actually easy to get name brand bottled water. THe last day we were leaving for the airport and hotel gave us a boxed breakfast. It contained a local brand of bottled water. I didn't drink it but kept it in my diaper bag. The first day I was back home I was at the park with my daughter and very thirsty so I drank some of the water. It actually tasted awful and I remember thinking, "Oh great, I made it through China... [ more ]
CeeeeCeeee I am so very excited for you! The availability of bottled water was no problem for me. I, too, worried most about getting an obstruction....having experienced one here at home which landed me in the hospital for six days. My obstruction was caused by a twisted small intestine. So, I was super vigilant about massaging my abdominal area if I felt the least bit scared I was about to experience another obstruction. That seemed to work! I also hung upside down over the edge of the bed while... [ more ]
Olive Oil And how many of your kiddos came home with a parasite? Were you at risk for getting it from them? [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal pain/cramps after surgery
S Shainy
Shainy thanks mysticobra I had no problems really after my first surgery, but I suppose the end ileostomy is much easier to manage than the loop. when I say minor pain, its all relative, I wouldn't like to have to put up with this for a long time, but if I know its just for a short time and it will go away I can handle it [ more ]
Mysticobra Short and sweet. I believe it is normal. You are lucky if it is not severe. I had severe pain six month up to and when after receiving my pouch I don't have any now but had it for a long time afterwards. Yes I had three obstructions when I had the bag and you must chew..chew...chew...and drink drink...drink. I believe most problems that occur when you first have a bag is inexperience and not listening to the surgeon and stoma nurse. That was me. I hope this is some help. [ more ]
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J-Pouch ForumsGeneral Discussion
Defogram?
M Megals
Tiffany01 Megals I haven't experienced this. But my close friend sara pass through this. There was twp peoples in the room and both were male. Although they were very respectful to her but she says it really embarrassing. [ more ]
Megals Dort- I hope the pills help your situation! Keep me posted on how they work for you I am nervous about the surgery, but am so glad there's a reason for me feeling this way. I really hope these next 3 weeks fly by (both for my anxiety's sake and how uncomfortable I am) Wishing you the best!! [ more ]
Dort Megals - I'm so sorry to hear that you will have more surgery. But if it solves your problem than it will be well worth it. My test results came back and no abnormalities were found. Now my doctor thinks I may have bile salt diarrhea so I just took my first pill to address it. One of the side effects can be constipation. Wow, that would be a nice change. [ more ]
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J-Pouch ForumsGeneral Discussion
biopsy results just received.....
W ween
TE Marie Allswell, Ask Jan for sure but most of us have UC in our rectums. It didn't make sense to me that a double stapled procedure was performed on me after I had my surgery as I'd had UC in my rectum since I'd been diagnosed. I think you have a great question. I didn't realize there were 2 different methods to attach the j-pouch to our rectal cuff, hand sewn with muscosectomy and the double stapled procedure. I probably would have gone along with my surgeon's choice and picked the double stapled... [ more ]
allswell I am getting surgery in a few days. Is there any connection to these issues and how low in the rectum The uc was before surgery, or how much cuff was left remaining? [ more ]
ween Dr. Shen did reply and said "would not be much concerned" about my results. He is suggesting Canasa. [ more ]
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J-Pouch ForumsGeneral Discussion
off topic: Surgery for tendonitis?
skn69skn69
skn69 No steriods in the tendons although he is suggesting it for the 'Morton' between the metatarsals...not sure yet about that...I am kind of scared of steriods...Been there, Done that...so maybe if I can avoid them...it wouldn't be such a bad thing. If the surgery and prognositic go well I will let you know...it is an interesting method for treating the problem and totally non-invasive with fewer complications (I won't say none but less). Hopefully it won't be too painful. Keeping my fingers... [ more ]
Jan Dollar Tendinitis is active inflammation. Tendinosis is the malformation of the tendon, either from inflammation or repetitive stress. The symptoms are the same. I think your choice for gradual conservative treatment makes a lot of sense. I'd avoid any invasive stuff on the tendon if you can. If the injections were to be steroid, I REALLY would avoid it. Good luck with it and the bunion surgery! http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3312643/ Jan [ more ]
skn69 The appt was rather interesting...had the x-ray and an ultrasound of the foot/tendon and once I got the results I wondered how the heck I ever manage to stand up in the mornings! I have severe tendonosis (what is the difference with tendonitis?) and a shortened tendon but no calcification (which is a good thing I figure). The foot is a mess. Shortened metatarsals, deformations, hallus limitus (the bunion is on the top of the toe and not the side so the toe cannot move up and down), something... [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoid, prolapse j pouch?!
ccanepa456ccanepa456
Holly M a bidet is a j-pouchers best friend if you can get one, it washes and dries you so no wiping. I love mine! Can't imagine j-pouch life without it for me at least. [ more ]
tulsamom So what's the best action for us J-pouchers when we have hemorrhoids? Obviously drink more. But, physically, what should we be doing to make them go away? I just started wiping with Tucks medicated wipes. They have witch hazel as the main ingredient. Any other ideas? [ more ]
ccanepa456 Yeah I have pouchitis and a hemorrhoid [ more ]
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J-Pouch ForumsGeneral Discussion
Length of bowel used in j pouch
S Shainy
TE Marie The pouch stretches over time. [ more ]
Shainy Ok thanks jan I just assumed the more bowel they use, the bigger the pouch and bigger the capacity but obviously that's not the case then over time... [ more ]
Jan Dollar My understanding is that it is a range, not a set number. It depends on your anatomy. From what I've read, it is 6-12 inches, or roughly 15-30 cm. The less that they need to use, the better, because less tissue to be exposed to inflammation, and more tissue left for normal nutrient absorption. Small pouches have the same function over time as large pouches. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Where to have bio feedback
J Jamesforpm
boy's mom Jenni Gabelsberg helped my son who was also prescribed biofeedback. She was great. (310) 370-1200 jenni@womens-advantage.com 20911 Earl Street Torrance CA 90503 [ more ]
suebear I had a biofeedback rectal PT in Los Angeles but she retired a few years back when she became pregnant with triplets. She may have been replaced; I saw her at Norris Cancer Hospital on the USC campus. You can try calling the Colo-rectal department there and inquire? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture timing
K Kushami
Holly M what does dilation consist of? [ more ]
Kushami Thank you for your reply, rachelraven. A blockage was ruled out today so off to see surgeon next, possibly for dilation. It sounds like you have had a tough time with your pouch in recent years. Nice to see you smiling in your photo, I must remember to keep my spirits up too. [ more ]
rachelraven Have issues with them now, and it started 20 years post (but likely also has something to do with a perianal fistula and some inflammation). [ more ]
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J-Pouch ForumsGeneral Discussion
Another ? About Canasas
W ween
Jan Dollar No problem. It definitely can be confusing and almost seem contradictory. Just remember, practically any medication will have similar disclaimers to be sure to notify your doctor of any allergies. Jan [ more ]
ween Oh....I hate trying to research things. Sorry Jan, I get so confused reading some of the info out there. Thanks for being patient with me. Now I just have to wait till monday to have Dr. Shens office call it in! [ more ]
Jan Dollar Just to make sure you understand. There is NO sulfa in Canasa (a brand name of mesalamine suppositories). But, both Canasa and sulfasalazine are forms of 5-ASA medications. ALL 5-ASA medications break down to mesalamine as the active ingredient. With sulfasalazine, the sulfa portion is just a binding agent to prevent absorption before it gets to the colon. Bacteria break the bond in the colon to release the mesalamine. Canasa is a topical/rectal preparation and does not need anything to... [ more ]
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J-Pouch ForumsGeneral Discussion
Multiple Fistulas and Abscesses
resres
res I guess I'm wondering if they have talked about removing the pouch and going back to the ostomy. Would that take care of the issue or will it just reoccur another place? I'm having a bit if trouble with continence, probably because one of the Fistulas and the abscess is going straight through my sphincter. Thank you both for the information! [ more ]
n/a Dr. Shen injected doxycycline into my fistula tract in an attempt to create scar tissue and close it. After 3 attempts and no changes to the fistula, he referred me to a surgeon at CC who put in a seton; this was 2 years ago now. If this is what he would like to do with your fistula, I would specifically ask how many times he has used this technique on fistulas, and how many times it was successful, or is it just in "trial" stages. He was pretty convincing when explaining how the doxy works,... [ more ]
rachelraven I have a simple intrasphincteric perianal fistula that started as an abscess. I have a draining seton, because my surgeon feels that surgery there could render me with incontinence because of the previous J pouch surgery. I am completely continent now. Overall I'm frustrated with things, but I suppose it could be worse. My new GI is reluctant to call it Crohn's, because overall, my innards look too good, and pathology only came back for mild inflammation. So the seton stays for now... [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics for SIBO
SavannahSavannah
AllyKat I seem to be doing good with store bought and home made probiotics. I've 24 hour yogurt and kefir) along with a low carb, low sugar diet. I also switch around the probiotics as par my doctors advise. I also kicked started my system with a 6 day course of fecal transplant after a three week course of xifacan for SIBO [ more ]
Scott F I chose to continue VSL while being treated for SIBO. The treatment seemed to go fine. I *think* the bacteria that overgrow in SIBO are quite different from those included in most probiotics. [ more ]
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J-Pouch ForumsGeneral Discussion
Does butt burn ever get better?
BebeksporBebekspor
MJC I find that applying a thick layer of Vaseline or A& D ointment right before a movement helps protect the tissue. I use Balmex afterwards. When I feel spasms and/or pain I sit on my heating pad. [ more ]
lholdem Hey ljz, What's the name of the oval pads you're using? I saw an ad for the butterfly pads in a magazine (looking at continence ads in my 20s, yay!) but they looked EXPENSIVE. [ more ]
Bebekspor It has been a few weeks since I posted, and I'm happy to say that my butt burn is almost gone. We have a handheld shower head in our guest bathroom, so I've been popping in there for a quick rinse every day. Still have butt burn on heavy output days, but it's nothing like it was 3 weeks ago! Almost 3 months out of takedown here! Katie [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
question????
Holly MHolly M
MJC Re: question???? [ more ]
rachelraven However, things have been going alright. I started occasionally taking a Mag Ox. That helps. Magnesium pulls water into the bowel. I do better with a looser stool. I've upped my water tremendously. I'm avoiding all gluten and starchy foods. No nuts, mushrooms, corn, peas, quinoa, high fiber, Chinese veggies... I found some trigger foods in FODMAP I'm avoiding too. Purple grape juice, 4-6 oz in the morning helps, too. I also drink dry red wine about 2 glasses 4X a week. I know my body will... [ more ]
rachelraven See my thread here... http://j-pouch.org/eve/forums/...1071921/m/3087013076 [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
morning blahs
GinLynGinLyn
Mahshelley I feel the same way. Mornings are a "no talk zone". People around me know I don't like to be bothered the first hour I'm up. My advice is to get into regular clothes as quickly as possible. Let light into your room. If I loaf around in my sweats all day in the dark, I find it just makes things worse. Beyond habitual things like that, I am on a anti-depressant (pristiq) and it's really helped while I'm going through this. I know it's not for everyone, but for me, behavioral and dietary... [ more ]
Dort I liked what everyone had to say. For me, after speaking with my family doctor she suggested I temporarily go on an anti-depressant. It takes the edge off the sadness I was feeling after going through all the medical issues and surgeries and hospitalizations. It takes a couple of weeks to kick in but what a difference. Once my j-pouch issues get resolved I will wean myself off. Until then, life is okay. [ more ]
TE Marie I quit beating myself up over it. I was forced into retirement due to disability. I make all of my appointments in the afternoons and some days I don't change out of my night gown and house robe. If I over do things one day the next or the next few days I might not be able to get out of bed much. Yes I am depressed but my body is also in a constant state of pain, they go hand in hand. Some days are worse than others. I'm older now and as I don't work out side of home I don't need to take a... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
What are my options??
S sally85
sally85 Also has anyone had a mucosectomy done at at marks hospital in harrow, England? And how has it been? I'm at that hospital at the moment and I'm thinking they don't preform that here :/ [ more ]
sally85 Ohhh I see, that makes alot more sense to me now, that's why the consultant said they remove it all, thanks so much jeane do you know how good the mucostectomy is? Is there less control with it? Has anyone had a mucostectomy?? And how has it been?? [ more ]
jeane My undetstanding is a mucusectomy entails removing the rectal cuff and hand sewing the pouch lower in the anal canal. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
random Q: pouch advancement
GinLynGinLyn
jeane Good luck Gin. I hope this solves your problems. Keep us posted please. [ more ]
GinLyn Yes, it is specifically because of the fistula damage. The rectal cuff and upper part of the rectum are compromised -- what fun! Guess I'll just have to ask about what happens when I'm admitted for the pre-op stuff! Gin [ more ]
TE Marie Since you have fistula damage your surgery might be different than jeanne's. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
First case of pouchitis
ccanepa456ccanepa456
Kushami Your mum is trying to be helpful, but you should only make major changes to your diet under advice from a medical professional e.g. surgeon, doctor or dietitian. Antibiotics aren't "bad", they are a serious medicine for a serious problem. Remember that your doctors have studied for many years, and that their recommendations are backed up by many studies and government oversight. [ more ]
Scott F Most cases of pouchitis clear up fully with 10-14 days of antibiotic use, and don't come back very often. Some folks, like TinCan (and me) have to stay on antibiotics, but even that generally works just fine. [ more ]
TinCan As far as I can tell, alternatives are few (I have chronic pouchitis and have been taking cipro more or less continuously for about two years now). I have heard on this list of people radically changing their diet in the manner suggested by your mom. I personally have not gone that route because, like you, I just want to live normally. People have also tried bismuth based products like Pepto Bismol and claim it has helped. I personally have been thinking about trying humira if I can't get... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
excessive sweating/ over active nervous system after j pouch
V viking87
Jan Dollar Wear a hat? That's a good one! If this was not serious, it really would be funny. While it may seem like it, medical professionals do care, and they hate being stumped almost as much as you. However, since they are not suffering with it, the motivation is not the same. Since this is not a life threatening thing, it gets pushed to the back burner. But, for the sufferer, it is extremely debilitating. Plus, for you, it could be dangerous, since you are more at risk for dehydration without your... [ more ]
viking87 Thanks for your info, I had a vertical MRI done of my head to check for pituitary tumors, negative. This whole thing is getting so frustrated getting billed for basically using their resources when I am doing all of the research and footwork, they haven't suggested anything and simply say, they don't know and offer brilliant groundbreaking medical advice such as " have you tried wearing a hat with a headband under it to keep the sweat off of your eyes?" No doctor, I honestly not not... [ more ]
Jan Dollar Pretty much everything that crossed my mind has been suggested and/or tried. I do think you are on the right track of sympsthetic/parasympathetic system disruption. It can be triggered from a variety of sources and and disruption at any level within the reaction chain will set it in motion. My husband suffered from episodic hyperhydrosis that started basically out of the blue. After some testing, the assumption was panic (anxiety) attacks. Who knows what the first triggering event was, but... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
blockages every few weeks??
dgtracydgtracy
Olive Oil I have chronic obstructions and have had to seriously monitor my food...I'm really close to having to puree everything but for now I just avoid all raw veggies and fruit unless pureed in a smoothie and there are only a handful of veggies I'll go near even when cooked because broccoli, mushrooms, brussel sprouts, etc. cause such problems. I am VERY careful and just know what my body can handle. Some day I may have surgery to try and repair this stricture or whatever is causing them but with a... [ more ]
MJC My pouch is 20 years old and for the last 6 months I have had similar problems. Bloating, cramps at first I tought it was pouchitis. Today after exam it was stablished that my cuff has narrowed and cannot acomodate anything too latge going thru. Therefore it all stays in the pouch until it liquifies, which ecplains the bloating and pain. I'm scheduled for "stretching"next week. Surgeon said that he might have to do that a few times...a month apart.He thinks that the pouch might have twisted... [ more ]
Jan Dollar Not the best of news, but at least it is better than getting the brush-off and told you are fine!hope all goes well without complications. Jan [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
coffee
U UjohnjC
CeeeeCeeee Same habit as CTBarrister! Love my Keurig and French or Italian roast. The stronger the better. My pouch is happy with its daily dose of coffee. [ more ]
CTBarrister I have had 2 Keurig cups of coffee (total 17 ounces, the max that fits in my mug) every morning for many years. I prefer dark roast coffees and I am on a rotation of 3 different ones that I like. I only drink coffee in the morning and switch to herbal tea after noon, although occasionally I will get a decaf with lunch. [ more ]
Spooky First and foremost, keep in mind that there is no universal list of "yes and no" foods for pouchers. We're all different. In my case, I've always been more of a tea person (in fact I drank gallons of it before my surgery, and still do!), but I would enjoy the occasional morning coffee or dessert latte from time to time--until I figured out that coffee gave me almost instant diarrhea with both the ilestomy and again with the pouch. I haven't tried drinking it in years; I suppose I could... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
well I had my ultrasound
S Sonja6
TE Marie It would have been nice if they would have just admitted they didn't know if it was simple or complex instead of blowing you off with a referral. Plus who hands a patient a phone number and says good luck! Doesn't the referring doctor call the specialists office so you get in right away! I'm glad you have a GI to take care of this for you. My C/R surgeon removed my ovaries when he took out my colon, at my request. I'd already had my uterus removed years ago and the ovaries had quit working... [ more ]
Scott F I'd suggest finding a good urologist - I agree that a GYN is a poor choice. Perhaps your GI can help you do that. There ought to be a CT scan in your future, I'd guess. Good luck! [ more ]
Sonja6 Well they say I have a renal cyst. But there not telling me if its simple or complex! And when I asked that they just said they are going to refer me to someone else!! I then asked if the back pain I'm having is associated with it and they just blew me off! So they called back with where they want to refer me to, they gave me the doctors name. It's a OB!!! Why would I go to a OB for a renal cyst!! Especially one that didmt see a grapefruit size complex ovarian cyst! Ridiculous! This is why I... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Sudden night leakage and spasms/cramps after 10 months
A Anthonyv
Pluot Sounds like diversion pouchitis -- pouchitis that is caused by not having stool passing through the pouch. So, ironically, your takedown would (probably) make this better, not worse. Diversion pouchitis can happen to anyone who has a diverting ostomy, even people who don't have IBD. Your surgeon can evaluate this -- they might want to do a scope to confirm, or try treating it first. Treatment would usually be rectal meds, like mesalamine suppositories, Cortifoam (steroid foam), etc. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Stricture problems
I ian337
jeane Same exact issues here. Been dilated a number of times and stricture always recurs. I also have to go several times in a row to empty and can be very painful at times and have chronic pouchitis due to it. Seeing my surgeon Monday as GI is suggesting pouch advancement. I have cuffitis and fissures from all the straining to empty pouch. Very, very painful. No Chrohns as of this time. I guess you should revisit your surgeon it GI as they may opt for another dilation or determine if inflammation... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Cholangitis? WTF?
J JeffDC
Murray I went through the whole transplant workup just to find out the PSC Doc who said lets wait and see was right. cost me $6000 to find out that the Liver wasen't in as bad of shape as the transplant teem hoped. c [ more ]
JeffDC Tech, you've been put through the wringer. I hope some good news happens for you soon. My last MELD score was a 12, but I am not on a list. So I have my fingers crossed. A lot of the lessons I learned when fighting UC are helpful, and you comments are in line-having the right mental outlook is key. [ more ]
techwrench It truly is a roller coaster ride.Back in 2004,my gastro. at the time said, "by next summer you will probably need a transplant,so we need to get you listed". That's when I went through the transplant evaluation,and listing process.PSC is a difficult disease to navigate,and predict.With the high risk of cholangio carsonoma,I think that's why doctors are over cautious and jumpy.My hepatologist said they don't want to prematurely transplant anyone,because with the risks,and the side effects of... [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Healing times for different closures of stoma
W wooly-bobs
wooly-bobs I'm 2 weeks post op on Monday next week so I'm not far behind you. I'm also considerably more healthy than last time so hopefully I will heal quickly. [ more ]
shnwilkins Of course everyone heals at different speeds but im two weeks post op and I had my stoma left open to heal as well and it is already about halfway healed I would guess. It was about an inch or so deep and now it is definitely under a half of an inch. Packing everyday and cleaning, also dont pack too tight. I did have a small stoma though so that could be why mine is healing so fast, plus Im young. [ more ]
wooly-bobs Thanks Sharon, My wound is going to need regular attention from the community nurse team to dress and pack it. When I had my original proctocolectomy surgery the incision looked fine but it broke down within weeks leaving me with several open holes down to my muscle layer. At worst I had 3 wounds being packed, eventually they healed up after 4 months. The way my wound fell apart showed how ill I was before my operation without realising or more likely accepting it, all my bodys reserves had... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Illeostomy Appliance Comfort Issues and some Questions From a Newby
ATXGuyATXGuy
Pluot I think the suggestion in the link I provided is applicable then. Take a look. And again, if you haven't already, you should try a few different brands. If you're saying that you're using an additional adhesive in addition to your wafer, that shouldn't be necessary (especially if it bothers you). [ more ]
ATXGuy Thanks again. It's not the area under the wafer that gets itchy, it's the area under the adhesive. Does that make sense? [ more ]
Pluot Sorry, I'm not sure what you mean when you refer to the "collar" -- do you mean the adhesive closer to the outer edge of the wafer? Again, each brand uses a somewhat different material for the wafer, e.g. Coloplast is a harder plastic type material while Hollister is fabric. An oft overlooked approach is to simply remove all of the excess and secure the "important" part of the wafer (the "wax" like material you're talking about, plus or minus a barrier ring) with a non-irritating medical... [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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