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J-Pouch ForumsOstomy & Skin
Rectal discharge
HH Holly HM
ljk Yikes! sounds like something is going on! Hope he can figure things out for you. I would have this taken care of before your connected. Prayers for you! LJK [ more ]
FaithHopeLove Is there any new info from anyone on this? I’m having the same issues and have a scope next week. I’m in a temp end ostomy and nothing is connected to my pouch so I shouldn’t be having this pus/blood coming out a ton my Dr said. [ more ]
GinLyn I'm waiting for a call from my GP to get a referral to a GI. Think that's the route I need to go. Unfortunately my surgeon is not in my city, and getting an appointment can take a very long time. As I've been well for quite a while, officially I'm discharged... But I think if I see the GI here, he/she will simply bump me up to my surgeon, which means a faster appointment time. Gotta know how to work the system! Hoping something else works other than surgery. Really don't want to do that... [ more ]
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J-Pouch ForumsPouchitis
FLagyl GEL?
K katenet
Scott F There is very little research on this, and the gel product is designed for vaginal use. Some side effects, like those flu-like symptoms, are likely to be the same regardless of where the drug gets absorbed from. Upper GI side effects might be reduced with the gel. Lacking better data you should assume similar absorption, and thus go for a similar dosage (in mg) to an oral dose. There are other pouchitis meds, though, that are much better studied than all this guesswork. Xifaxan (rifaximin),... [ more ]
Accept It I am curious to hear the responses regarding flagyl gel as I also have gastro problems with oral flagyl. I'm alergic to Cipro so am limited as to what i can take when I have pouchitis. Any response on this will be very appreciated!!😀 [ more ]
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J-Pouch ForumsGeneral Discussion
Choosing a surgeon
M mremp
RHF Thank you. [ more ]
TE Marie I suggest getting a surgeon at the Mayo Clinic or Cleveland Clinic. Dr. Kellie Mathis at Mayo's in Rochester, MN is excellent. I'd advise that you have a surgeon that can do the surgeries laproscopically. This will save you the potential for many more adhesions/scaring. [ more ]
colitisresearch First- I think having this type of surgery done either at a teaching hospital or one that has a sept that specializes in GI surgery is important. From there you can see from their web site which colorectal surgeons do jpouch surgery. Once you get a few names- ask if anyone on this site has been to them. When I asked my surgeon how many jpouch surgeries she performed- she didn’t want to give me an exact number but rather told me how long she’d been doing them. It can be a daunting process so... [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn
K Kim_A
Sunflower70 I get them at CVS or online at Amazon. Look up MetaMucil Fiber wafers. The new chocolate flavor is fabulous. The apple cinnamon is pretty good. They get stuck in your teeth, but are worth it! I really wish I knew about them when I had my interim ostomy because I couldn't make myself drink the metamucil power. [ more ]
GraceB Where do you get Metamucil fiber cookies? [ more ]
Sunflower70 Hi Kim_A, Have you tried Ilex cream? I'm having issues too (two years post take down) and I find that ilex cream is the only cream that really helps. My butt burn is more like an itching/tingling/annoyance that lasts for about a half hour after I go to the bathroom, so it's not as bad as the initial butt burn I had after surgery, but it's still very upsetting to be so distracted by that part of my body for large parts of the day/night. Even though ilex cream is just a barrier cream without... [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber pills
G GraceB
GraceB Thanks everyone for responding. I had to go for a stretching a week and half ago. I am still having problems. I know I don't eat to much fiber because my system can't handle most veggies. I have been drinking prune juice during the day and Metamucil at night. I am still having problems. My gastro is saying that I may have to be stretched again. I am seeing my surgeon on Tuesday to see what the problem may be. I have been stretched quite a few times before. This is the first time I am having... [ more ]
Scott F I tried the Metamucil capsules, but they didn’t mix well enough with my stool to do their job. [ more ]
Still Standing I have also used the pysillium husk raw organic I bought from Amazon - 1 teaspoon every morning. It is tasteless when I mix it with my morning smoothie. I personally like it better than Metamucil. [ more ]
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J-Pouch ForumsGeneral Discussion
Anal stretching
G GraceB
GraceB Thank you everyone for your comments. I will let you know what the doctors are telling what I have to. Thanks Grace [ more ]
Former Member Is this not referred to as Dilation rather than anal stretching During my takedown surgery I had dilation, although I didn't discover this until some months later during a consulation. Dilation was required due to the narrowing of the anal canal, which apparently, is a normal part of the recovery process. I assume it'll be the anal canal rather than the stretching of the anal sphincter, it's normally preferably that the anal sphincter remains tight to prevent leakage, which the pelvic floor... [ more ]
Raj Yeah I got that done once when my UC was wrongly diagnosed for a anal fissure. They try stretching your butthole cause apperently sitting too long causes it to squeeze up not letting you pass stool properly. I think it was bullshit in my case the docs didnt even know it UC causing the blood and irregular BMs. Have you tried doing pelvic exercise. They might help you get over with the control. Earlier I found it difficult to empty my pouch too. Now I just go less and hold more. Also something... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BM diary
M Mat
Mat Many thanks Scott and yes, having had my J Pouch since 2007, I know whats full and whats not, especially on 'what comes' out of it every time I go to the Loo I thank you for your input and suggestions, Have a wonderful day... Mat [ more ]
Scott F Mat, if you’re actually truly filling up a normal-sized J-pouch 23 times in a day then you either have an infection (like C diff) or (as Strange suggests) you are drinking much too much water. Your pouch doesn’t manufacture its output, so it has to come from somewhere. It’s much more likely that your pouch isn’t really full, even though it feels full. This is a pretty common sign of pouchitis, which is easy to treat, and should generally require only one visit. When you go to the doctor,... [ more ]
Mat No confusion Strange, I understood what you meant and I thank you for your input [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis and pregnancy
B Bubba1028
Bubba1028 Humm you have some good insight. I haven’t heard back from my gastro yet but did decide to call my OB just in case. They think it’s just growing pains but I’m not so sure. I have an appt tomorrow (they bumped it up from next week) and I’ll see what the doc says. Funny you said you’re prob not pregnant. Let’s hope not! lol. [ more ]
Scott F It’s probably not pouchitis. Bleeding isn’t a particularly common sign. There’s a decent chance that the bleeding is from hemorrhoids. Hemorrhoids are common in pregnancy, and frequently bleed. The abdominal pain is trickier to work out, since pregnancy can cause discomfort, as well as pouch or other non-pouch GI issues. It may take some detective work to figure out. If you needed a pouchoscopy (which you probably don’t) it should be pretty straightforward during pregnancy, as long as the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
incisional hernia
duck11duck11
David W I don't know what is possible in Canada, but if it's possible, you should try and see another surgeon or GI doc. You might have to wait a while for an appointment, but make an appointment anyway. Are there any university hospitals near you? They like the challenging stuff. At this point it sounds like the system has let you down. The good news is that somewhere there is a compassionate doctor who is willing to work with you to try and resolve this. Go find him or her. How incredibly... [ more ]
duck11 Hi all, I thought I'd post an update and ask for more good vibes I was in the ER this weekend again and my colorectal surgeon arranged a ct enterography and concluded "there is nothing wrong with me" after all this--the scan was clear. No explanation for my pain and multi hospital admissions and ER visits. Just a blunt "go see your gastro" who, if you recall at the start of this saga, said "go see a surgeon". I'm being passed around like a beach ball with no answers other than what seems... [ more ]
David W Glad to hear that you finally might have some help. Hang in there and let's hope this new person can provide some answers, and some relief. I'll be sending positive thoughts. [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
Opinions about medicinal marijuana for J-Pouch, and my story
FM Former Member
TE Marie Valli - Too bad your surgeon wasn't much help. I've always had to deal with my Internists to get pain medications. At least she said she was neutral. I'm not telling my doctors about anything as it isn't legal in my state. I buy it in a legal state. If it wasn't for family we'd move. Strange, I'm the same with prescription medication but wouldn't drive after cannabis use that contains THC. [ more ]
valli Saw my surgeon today and she is treating me for pouchitis with flagyl hoping that will help the pressure then I don’t have to try anything. Will get a pouch scope done in a few weeks . If that doesn’t help I will try a few different strains as mentioned above . I asked her about trying something ( cannabis ) and she said she couldn’t help me with that . That she is neutral it just became legal here in Ontario She wasn’t that much help [ more ]
Beth-Jpouch1991 ❤️
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J-Pouch ForumsGeneral Discussion
Elbow and shoulder joint pain
M Mat
Mat Many thanks for your replies [ more ]
drone3 I have pretty bad joint pain, mainly in the SIJ , hip and knee. I only get shoulder pain when I sleep for too long on my shoulder. Lying flat on my back with no pillow under my head, I put the pillow under my knees. [ more ]
PouchLogic Hi Mat, I do get elbow and shoulder pain, unknown if it's really linked to anything other than arthritis which is common for anyone with autoimmune issues. I've had many issues related to joint pain and joint inflammation, not just elbows and shoulder. I do find keeping my arms and legs straight but relaxed is helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Having problems - excessive BM and extreme fatigue
M Mat
Scott F Technically C diff *is* a type of pouchitis, though we usually talk about it separately. This could certainly be C diff, and it’s probably worth testing for, but that’s less likely than garden-variety pouchitis. Lots of us have no trouble with fresh fruits and vegetables, though a dietary issue does need to be considered, too. [ more ]
tf Could it be c-diff? [ more ]
Mat Many thanks Raj, I appreciate your response [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ileus or not?
M Momma
CTBarrister I would suspect the nausea and vomiting are from the fentanyl but it could be his motility is a bit slow due to the fentanyl and, if so, he should ease back on it. The walking should help stimulate motility but pain meds slow down motility. But if the bag is filling he has some motility and likely not a full ileus. [ more ]
Momma He is vomiting but not violently and not all day long. Maybe 3-4 times a day. His pain control is fentanyl via epidural. He walked 10 laps already today. [ more ]
CTBarrister I had a postsurgical ileus and it was not just nausea but preciptitous, violent vomiting that required insertion of NG tube. There was no output in bag at all, and the spasmodic vomiting concerned them that my sutures would tear open and cause infection. An ileus will not be suspected if he is not vomiting and the bag is filling. They will only suspect an ileus if he starts vomiting because with an ileus, what cannot go down eventually must come up. As long as the bag is emptying he should... [ more ]
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J-Pouch ForumsGeneral Discussion
Digestive enzymes
LaurieFLaurieF
LaurieF Thanks again folks. Ive been researching and i think i will try to find a supplement that would have a good amount of the enzyme “cellulase” since from what ive read is what would help break down cellulose. Before this narrowing vegetable digestion was not a problem but now i have to really watch it. Thanks again for your input [ more ]
Raj Raw veggies does make you go often. So what it shouldnt stop you from having them. Whenever I am at my home and I dont have to go out I get myself all veggies in a good proportions (includes corns and mushrooms) make a dish or steam them and put some good seasoning and I'll just eat them all. I wont lie it make run like 3-4 times in just 2 hrs but its totally worth it. It gets normal after that. And as I am eating more I can tolerate them better everytime. My takedown was 3 months back I got... [ more ]
Bubba1028 I try it, i figure it can’t hurt! I think it helps with the gas and bloating. I take it only at night with dinner and a gas ex with dinner too. I find it helps with the gas and bloating. It may change the further I get out from my takedown. There are foods that I stay away from even with the enzymes and gas ex, such as apple skins, grapes, kale, etc. I say give it a shot! Track your results and see if it produces results. [ more ]
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J-Pouch ForumsHelp! Need advice now!
j pouch completed in Sept 2018
MR Mark Ragnone
Raj I think he meant having to go to clear up the pouch. Usually with loose stools you can't urinate too many times. The water absorption is lower. And Mark you are doing good just sit back give it time to adjust. The intestines will start to absorb more in a few weeks. And in few months you'll find yourself back on track. You can take probiotics or pysillium husk at best. And keep applying barrier creams on bottom part all the time. Eat foods like brown breads,rice, bananas, eggs,... [ more ]
Scott F “Voiding” usually means urinating. Is that what you meant, Mark? [ more ]
Bubba1028 What is your diet? Does it ever calm down? For example, I eventually found mornings were lighter since I didn’t eat all night. I think I was going 10-12 times per dayeven up to 8-9 months after my takedown. It does take time. The longer you can stall from going to the bathroom, the more the pouch will stretch to accommodate more stool. Some people take Imodium or Lomotil. Others swear by psyillum husk or metemucil, which are more natural. There are some foods that can bind you up more like... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Losing weight while pregnant/pouchitis
C clouwho2
Bubba1028 I had some pretty bad nausea my first semester too. Although I didn’t lose weight, I only gained two pounds by my 5th month. I’m not too concerned but I am making an effort to increase my protein and eating a wider variety of foods. Have you consulted a nutritionist? What does your doctor say? I am also in Cimzia for my arthritis and have been on it since before I was pregnant. My rheumatologist also said it was the best biological to be on while pregnant. Although my gastro doc didn’t... [ more ]
AshleyAnn I lost a significant amount of weight during my pregnancy. I had severe morning sickness in the first trimester and bowel obstruction in late third trimester. I have been on Cimzia for a long time as I was told it was the best for mothers. I would look into Cimzia and ask your doctor about it. It’s two injections once a month. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch creation complete UPDATE
NickPNickP
Bubba1028 Oh that sounds horrible. I had have two blockages and a partial blockage and they are horribly painful. They were going to put in an NG then to relieve the pressure but I resisted, knowing that I’ve heard horror stories. I’m so sorry you went through this! Hopefully your next one will go much better and without any complications! Lord knows you deserve an easy surgery and recovery after this one! Let us know how you do with the recovery from here on out. Hope you’re seeing a nutritionist or... [ more ]
AARON I had ileus after both surgeries and didn't do much walking during either due to my bladder that went to sleep too. So I had a catheter and wasn't allowed to leave the bed. My ileus lasted only 5 days each time and my bladder woke up that day also.. ng Tubes suck. I feel your pain man. It's what nightmares are made of. [ more ]
Raj Damn I was kept for 3 days and couldnt bear even that. My surgeon wrote me off for the second day evening but I stuck around till the next day. I was doing 12x on the second day so I didnt want to go for the long trip to home. They gave one anti diaroehha just for the trip and paracetamol for 1 week post op. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal Stenosis J pouch
Z zackk
Scott F Thanks, Bill. I’d forgotten that there was a UK resource for the BCIR. [ more ]
BillV You may want to get a second opinion about having a J pouch, but the presence of low grade dysplasia with US puts you at risk if you do not have surgery. Two surgical options that do not require having an external bag are the K pouch and the BCIR. The BCIR has been approved by NIH in the UK and is now being performed by Dr. Ed Westcott in London. [ more ]
Scott F Zack, you might want to learn about K pouches, which might be a good solution for you (if/when you choose surgery). I hope you’re well informed about the risks you are taking by delaying surgery. [ more ]
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J-Pouch ForumsFAP Forum
FAP -J Pouch pros cons and experiences
FAPqueenFAPqueen
Cari I was 19 when I had a total colectomy with a temporary ileostomy for 6 months and then a Reversal to a j pouch. I am now 43 and am just now at a point of loosing the j pouch to an ileostomy. I had thousands of polyps and did not want to take a chance of having cancer as I was told at that time in 1994 that there would be a high chance of cancer If I did not have the colectomy. I was able to work day care for my cousin after about 2 months as my recovery process was rough. I ended up with a... [ more ]
luv2laugh I had my surgery at 43 for FAP. My preference was to get it taken care of and done, before I developed cancer. I didn't trust that any doctor could reliably monitor the number of polyps I had. In my mind, the only option was which surgeon, hospital and pouch method (stapled or hand sewn). I was scheduled to be discharged from the hospital after six days but they discovered a blood clot and nutrient malabsorption which extended my hospitalization to 16 days. I think I took approx 2.5 months... [ more ]
FAPqueen Thanks for the responses. My surgery consultation is on the 2nd of October and I will know when my surgery is booked then. I refuse to sign or agree to anything until every one of my question has an answer but I have been told by other doctors she is the best female in the field.. she’s just a total B-Word. not totally prepared to leave my job for a year, that’s going to be really hard. My boss is going to treat it like maternity leave so my job will be waiting for me to come back- but as I... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have a pouch and Interstitial Cystitis?
S stpaulmom
JulieT Yeah, the self-cathing is not fun. I do hope the UTI clears for you. I'm really struggling to get rid of mine once and for all. Keep me posted! [ more ]
stpaulmom I can’t imagine self installing! I’ve never even self catheterized! You’re amazing! I tried Botox last summer, it made me worse. Never again. I won’t do interstim because of the MRI issue. I find a heating pad helps too. I’m hoping this bout of UTI’s is short-lived. I haven’t had these, ongoing for awhile now. [ more ]
JulieT IC pain is so frustrating. I've been battling a stubborn UTI infection for the past two years. It seems like two weeks after finishing a round of antibiotics, I end up with another infection. Do you struggle with repeated infections as well? Instillations can be helpful. I asked my urologist for a kit so I could do my own at home. An instillation does take the edge off of a bad flare-up for a short period of time. I also have been having botox injections for the past three years. The only... [ more ]
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J-Pouch ForumsGeneral Discussion
Radioactive Iodine (RI-131) for hyperthyroid
R roseviolet
roseviolet CTB, You've presented the perfect argument in favor of annual physicals. The glass half empty approach probably goes with being a lawyer. You deal in reality & facts and you're not prone to simply assuming the rosiest outcome. Having a disease such as U.C. and, as in your case, having cancer, is nasty, but it also brings with it a depth of feeling and understanding for others and a most definite appreciation of life's transience. The marvels of life, from the resilience of the human body... [ more ]
CTBarrister Thanks Rose. It’s been 3.5 years now since I went through that. When my surgeon informed me that the biopsy on the thyroid came back positive for papillary thyroid cancer I was in shock. I never had any issues with my Thyroid although my mother and sister, like you, are hyperthyroid. All of this was detected due to my primary care doctor doing a routine annual exam and feeling swelling in my throat glands. Otherwise I would never have known. I was very lucky with a good team of experts- Dr. [ more ]
roseviolet Thank you for your added info. Health stuff can be so tricky and there's lots to consider. You were certainly fortunate to have such an expert on your team. Your thyroid episode must have given you some worrisome days. Am glad it's behind you and wish you the very best. We're all fortunate that you are so willing to share your experiences and knowledge. Rose [ more ]
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J-Pouch ForumsGeneral Discussion
Defecography
JesseP22JesseP22
Aimc Hi Jessep, I had my last surgery on Aug 15th, and was having a problem with emptying my pouch. I know it sounds really to easy, but try upping your liquid intake. I upped mine from around 60 ozs. to around 84 ozs. I can't believe it, but I have been doing alot better. I feel as though I'm actually empting my pouch now. As far as gas, we all have problems with passing gas. I don't seem to have as many problems as before though, because I no longer have the constipation I had before. Give it a... [ more ]
Scott F Unfortunately you may not get a 100% answer. My suggestion would be to go with the odds and follow their advice. Do the exercises consistently and you just might get great results, which would be a very satisfying 100% answer. Your pouch is still pretty new, so plenty of adjustment is reasonable to expect. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Interrupted sleep
Maxima66Maxima66
Maxima66 Thank you for your comments so far guys. If anything it's reassuring to know 2 or 3 times waking up isn't necessarily abnormal even after all this time. I think my pouch is generally very healthy I just need to perhaps adjust my diet. RAJ said he eats nuts etc I can but in moderation else I find I constantly feel like my pouch wants to explode! I know it sounds horrible but certain foods I need to avoid or keep minimal. Does anyone take sleeping pills? [ more ]
Raj I get up once at around 3 and then once at 7 in the morning when I hit the bed at 12. I am 3 months down with the takedown. I eat high protein, fats diet as they are slow digesting. Mostly nuts, chicken breasts or meat of any othe kind. If I have to eat carbs I make sure I dont overdo. 2-3 slices of brown bread with peanut butter or rice with peanut butter. With that I take 1tsp pysillium husk to keep things consistent.My surgeon said it'll come down to once or none at night in a few months. [ more ]
Mysticobra I know getting up at the most 4 times is alot and it will ruin the next day. I used to get up more than that. But even not having a pouch anymore I still get up 1-2 times a night. It's definitely alot better than it was I had some serious problems with my pouch. No sleep was one of them. Side effect. But if you can get it down to 1-2 times a night I think that would be normal and about the best your gonna get. I hope that doesn't sound disappointing. I get good sleep even getting up twice. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgeons unwilling to fix hemerroids due to location in j-poucher
LK Laurie Keeping
Laurie Keeping Scott, Thanks for your suggestion. I did discuss that with my doctor after the scope. He doesn't do that procedure. He asked various other doctors at the conference ( one happened to be the Proctologist that created my pouch) what could be done and they all agreed there's too much risk because of where it's located. I have researched Sclerotherapy and what I keep reading is that it's not done on stage 3 hemerroids only on stage 1 & 2 because they are NOT in the nerve sensitive area. It's... [ more ]
Scott F There are other treatments that might be safer than surgery. Have you consulted a gastroenterologist? I don’t know if sclerotherapy would be a good choice, but it’s worth asking. [ more ]
Laurie Keeping Thanks for your quick reply CTBarrister. I don't know what else I can try! My surgeon said that I should search online for a surgeon at a private clinic. That's why I think MAYBE someone could help me. I just wondered if anyone else was dealing with the same problem. [ more ]
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J-Pouch ForumsGeneral Discussion
oral meds for cuffitis ?
PouchomarxPouchomarx
Pouchomarx had upper scope, all normal...pouchoscopy showed two small ulcers at the pouch inlet so Dr Shen stated very mild pouchitis so prescribed Tindamax for 14 days. Said everything else looked really good. Been on them for 5 days now but my frequency has increased ?? and every once in a while I get some bleeding in the toilet, there after one poop and then gone the next.. he stated most likely from having a pouch redo. Said the area there is shortened and is very prone to irritation. ok lol [ more ]
Jan Dollar I took sulfasalazine for cuffitis when I was tired of suppositories. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Underarm ( lymph node ) pain
PetiPeti
JHendrix These challenges are so difficult to navigate. I really hope you fully recover. (Re typos - that's my language, no problem. ) [ more ]
Peti Sorry for typos ... my readers broke ...lol [ more ]
Peti My Doctor thinks it may be inflammation from the small bowl bacteria overgrowth . My lymph nodes are inflamed, but doesn’t feel hard lumps, just swollen & tender. I started Xiflaxin for 2 weeks, and if my symptoms do not disappear or improve I may have to have a node biopsy. But he wants to see if I can get rid of my bacteria overgrowth symptoms with the Xiflaxin, then that might be it. Xiflaxin cost me 2200.00 for 2 week does. I also do not the side affects I get from it but has helped... [ more ]
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J-Pouch ForumsGeneral Discussion
scar tissue/anal manometry
tftf
tf It's a long road and your new normal will feel and be better at times and sometimes so bad you don't want to continue. Keep going, each day is a new day to have a good day. When the days are good take full advantage of. We are here to support one another and it is comforting to exchange our feelings and views. So much good info on this site. I've learned a lot. God Bless [ more ]
rlblife I had it today- not fun but not terrible! [ more ]
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J-Pouch ForumsGeneral Discussion
VSL-3 maintenance advice
M marypar
marypar Thank you. He's had some pouchitis over the past 25 years but this bout was worse as he had blockage too which took over two months to start to clear up (even tho doctor doesn't related blockage to pouchitis, husband feels he is wrong and they are related). Medicare doesn't cover VSL but will check the website and see how much we can save. thanks for all your answers. [ more ]
Scott F The coupons are easy to find on the VSL web site. [ more ]
lablover Also see if you can get a coupon from VSL. My husband uses that and can get a 3 month supply for $179. [ more ]
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J-Pouch ForumsGeneral Discussion
Hospitalized / Likely not GI Related but Who Knows?
C capper
Lesandiego Last year I had viral bronchitis that was treated with antibiotics. Treatment did not work and they put me on prednisone and "mis"-diagnosed me as COPD. Long story-short... I ended up with congestive heart failure and a pulmonary embolism. My heart was only pumping at 19%. Cardio doc did a swan catheter surgery to drain the fluid off my lungs and I felt so much better. I now take Entresto and Metatoporol (BP medicine). I tried to wean myself off the meds, but I'm afraid the damage is... [ more ]
rustyskyline I am surprised there are not more posts like yours. Two years ago, I began coughing and bringing up a significant amount of phlegm. Since then I have seen 8 docs, have had six diagnoses and have undergone dozens of tests. The only thing they have determined is what it isn't. It isn't asthma, bronchitis or an infectious disease. All of the docs commented about a potential connection between my IBD and problems with airway passages. Similar to the connection with having digestive tract issues... [ more ]
Jan Dollar A few years ago I was hospitalized with violent chills and fever, shock. Diagnosis wound up being just sepsis. They ruled out flu, pneumonia, bacterial blood infection, etc.. Never found out what was the real culprit. Later on, I did wind up with chronic pouchitis. Remicade did work for that. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
VSL 3 side effects lightheadedness
AI Accept It
Accept It Hi Scott, Thanks for your response. I think I may be having some anxiety, which would cause lightheadedness. I am battling pouchitis right now and some stress. I'm super hopeful that VSL 3 (along with antibiotic) will resolve the pouchitis and help with my digestive issues. I believe you are the one that recommended this. Thank you!! [ more ]
Scott F This would be a very unusual side effect from VSL. I’d suggest looking pretty hard at other possible causes, perhaps a bit of dehydration, which is pretty common with J-pouches. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic sinusitis and humira (anti TNFs)
SaffSaff
Saff Ok thanks for the hot tip Scott, Yes that's the same saline rinse I've been using, its great - ill see if I can find that brand here Qnasl. THanks [ more ]
Scott F I used other nasal steroids for a long time with inadequate results. I changed two things, and one or both of them made the difference: 1) I do a sinus rinse every day a few minutes before using the nasal steroid, and 2) I switched to QNasl, which is one of the few remaining products that sprays well into the back of the nasopharynx. Together these seem to deliver the medication where it’s needed. The sinus rinse bottle is much easier than a Neti Pot. NeilMed Sinus Rinse [ more ]
Saff HI Scott, apologies that was an oversight, I should have also mentioned nasal steroids - I used nasonex - a different brand from the one you used, but also a corticosteroid. Still no joy for me, [ more ]
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J-Pouch ForumsGeneral Discussion
Healthy Living with a J-Pouch
G Goody21
CTB23 Good advice. Still figuring things out for me. Biggest problem I have is not gaining weight, a little over two years out. Although. I have never been overweight, even when I was pregnant! I try to limit sugar and carbs also, but not always as good as I should be. I like my dark chocolate with peanut butter. [ more ]
CTBarrister Very good advice to all Goody21. I have had a J Pouch for 26 years and ate more or less indiscriminately for 20 of those years. In 2012 after gaining some weight and developing worsening symptoms, I was diagnosed with SIBO and my then GI warned me to start limiting my intake of sugar and processed carbs. It did and does make a difference. The J Pouch is prone to SIBO and sugars and carbs promote a feeding frenzy by bacteria and can cause or worsen SIBO. Unfortunately many people want to see... [ more ]
Goody21 I agree with you! Here and there, processed foods or a little sugar won't hurt. But I feel in todays society that's a majority of peoples diet.... Intermittent fasting (Giving your digestive track at least 12 hours of no food maybe just water or black coffee) does wonders also... Physical activity and stretching is a ++ in terms of stress, social anxiety, etc. It's crazy the factors that play a role that can make a big difference.... Hope all is well [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Chronic diarea
C CandiceT
CandiceT Thank you for your advice. I am definitely going to reduce my dairy too. [ more ]
Raj Seems you have a mild pouchitis. I have it often if I increase of my dairy intake too much. I feel relieved when I cut it back. 2 glass is fine any more makes me run alot more and loosly too. Same with too much fried,salad or junk. I got myslef pysllium husk in raw form and now I take it twice once in morning and once at night helps alot. Also exercising reguraly too helped me bulk up the stool too. Simple walking 5k+ steps a day is very effective. I take no meds and 3 months post takedown I... [ more ]
NJshoremom This seems to help me maintain a healthy pouch-Metamucil every morning & switching to almond milk for most dairy alternatives. I go light on sugar as that tends to not agree with my pouch. In the past my liquid output was almost always food related and if I had pouchitus I felt awful (fluish)- that’s how I started to piece together my structures vs pouchitus,etc. Hope you feel better. [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Dizzy
A AnnieGirl
AnnieGirl Thank you! I’ll try balancing out my water intake [ more ]
Former Member You should be peeing no less than 3 times per day and your pee should be pale yellow, apprantly the colour of straw. Peeing more than 3 times per day, isn't an issue as long has its colour is consistent. If your pee is clear, then maybe you are drinking too much fluids and you're flushing your system of electrolytes. [ more ]
Bobish If you follow Raj advice, dont forget that beetroot can look like blood in the toilet bowl. Panics me every time lol. Seriously though, if your drinking a LOT of water, you may be flushing all of your salts, of which potassium is only one. Maybe your drinking too much water? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Medical Marijuana
D DSTJ
Beth-Jpouch1991 ❤️
DSTJ DarrenKS, thanks for your response - are the CBD capsules you are taking an over the counter product? I have been to a dispensary and have been using a dry leaf (flower) product via vaporizer with a 1:1 ratio of THC to CBD and it has helped a lot. Before starting it, I thought for sure I'd have to go back on Cipro since I developed all the symptoms for Pouchitis again, but the pouch has calmed down and I'm feeling pretty good. [ more ]
Marsh Chap Have you tried the oils as well? Or only the capsules? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
anal itching
S Susan33
Spooky Yeast infections can be persistent/recurring if they are not fully eradicated from the get go. Have you ever been prescribed an oral antifungal medication such as Diflucan? If not, this is definitely something to look into. Calmoseptine - or any topical ointment - may temporarily relieve the itch, but if not used correctly, can actually cause a rebound affect as the damp environment created underneath the barrier cream can encourage fungal growth. You can mitigate this by ensuring the area... [ more ]
Scott F Are you certain that the fungal infection is completely gone? That’s the most common cause. If you have any leakage that leaves the area wet then it’s hard to get rid of fungus. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
single ulcer in j pouch with no pouchitis
TC Terence Collins
Terence Collins The ulcer is about the size of a half dollar and did bleed when it was touched with the scope, biopsies were normal but after 4 months on proctofoam the ulcer is only mildly improved. [ more ]
Solomin i have an ulcer and no other symptoms. Have you been checked for any infections? It seems strange to me that this would cause anemia. Has your stool be investigated to see if there is any blood? Maybe you have c-difficile. Good luck! Solomin [ more ]
See all 2 replies...
J-Pouch ForumsMen's Health
Exercise and leakage
D DanielR
Maxima66 Yes I too have this issue, I always ensure I have a bit of tissue paper between the butt cheeks and a pad in my underwear if I am going to do any activity. The honest best thing and it doesn't always work is to make sure you have some Imodium/Lomotil about half hour before and some form of food (but not too much) to help bulk it. I am a rock musician and play on stage for sometimes up to 45 minutes so I make sure I am well prepared as that's a work out and sweaty as all hell at times. I... [ more ]
chiromancer Somethings I didn't mention that I tried to help lessen the leakage in the 18 months I had the pouch: a cotton ball placed lightly into the anal opening and tincture of opium. These two things provided some help (not enough) Nothing else I tried really made much difference [ more ]
DanielR Thanks so much for this (sort of!!). More seriously, it's really helpful information. Yes, sounds very similar. I did have radiation prior to surgery, and pouch looks good in scopes, so I guess I may have to weigh up the pros and cons here of an end ileo vs life with the leakage. Thanks again, and hope things go well for you. [ more ]
See all 6 replies...
J-Pouch ForumsMen's Health
Abdominal Pains/discomfort
CC Charlie cbnice@verizon.net
Solomin Perhaps you have a narrowing. Speak to your doctor as this can easily be confirmed. Maybe a dilation will be the answer after proper determination as to what is causing the problem. [ more ]
marz This is an interesting web site about sibo. https://sibosurvivor.com/sibo-antibiotics/ It not necessarily about pouches, but gives good info about sibo. (Which according to Dr. Shen at cleveland clinic (my dr) says a lot of people with pouches have sibo. good luck! [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
J pouch issues, permanent ileostomy or bcir
CariCari
JLH adding my 2 cents: the k pouch has been fantastic and i hope it lasts me to my end. i dragged out the decision to eliminate the j for entirely too long as hadn't liked the ileo, which i had for a year. j [ more ]
Cari I didn’t think so. I understood what you were saying. [ more ]
marc nolan After rereading my text I sounded very self centered and negative. My 2 cents for you - The End Ileo gave me zero issues for 13 years, the loop ileo was difficult. I did not love it but I ate,drank and excercised without issue and life was good. best of luck to you [ more ]
See all 20 replies...

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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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