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J-Pouch ForumsGeneral Discussion
probiotics
L LindaC
Bobish FAO boys mom, Appreciate this is from the symprove website, but the research is apparently independent from UCL London. http://www.symprove.com/biosci...ence/ucl-study?hcp=1 Its a starting point for you at least... hth [ more ]
Winterberry Hi, Boy's Mom. The liquid probiotic that I've been recommending and drinking is called "BIO K" not the other brand named bio kult. I've never heard of bio kult, but I think they are two different products. I've attached the link to the BIO K website so you can read on it. If your son is lactose intolerant as I am, BIO K makes a special flavour that is rice based, not milk based, so customers with lactose intolerance can drink it without problems. There is even a children's version. It taste... [ more ]
Aimc You can purchase both vsl and symprove on amazon. [ more ]
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J-Pouch ForumsGeneral Discussion
Support group for j poucher in Maine
MG Maine Girl
temoty HI, I live in Boston and I'm seriously thinking of moving near to the Kennebunk area or even southern Maine. I've love to chat with you about what Doctors you see up there and if they're good? Thanks, Tyler [ more ]
Winterberry You're welcome! One other thought for anyone searching for support groups: Most major cities have a Crohns and Colitis Support group. Contact the one nearest you and ask if they have heard of j pouch groups. If you decide you can start your own group, meet at local library, etc., be careful initially sharing personal / health information with strangers. [ more ]
Maine Girl You are so right! Ha! Thank you so much for all the advice and inspiring words!. You should be a life coach! [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamin D Deficiciency; something you should know.
RJGRJG
AllyKat They no longer recommend a level of 50-70 talk to your Drs about this. I'm under the care of my GI and functional med Dr and my bloods are checked every 6 months. 2 years ago they lowered my dose to bring my levels down [ more ]
Linguist ❤️
Linguist I have always been Vitamin D deficient unless I take supplements. The last time I got checked for Vitamin D, 25 hydroxy d3 was March 16th, 2017. The result was 21 ng/ml. The normal range the lab says is 20 - 70. I remember times I was way below 20 ng/ml. I discusses this with my new GI, but he didn't seem to care about it, although he is a renowned GI specialist here with a published scientific paper on the relationship between Vit D and IBD. Instead of getting daily Vit D supplements, I... [ more ]
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J-Pouch ForumsGeneral Discussion
can same MRI scan look at pouch and lower back issues?
PouchomarxPouchomarx
Pouchomarx So could I take my pelvic MRI to a back doctor to look for any back issues that may be going on from September? Cuz they were just looking for anything going on with the pouch like leaks or fistulas and such. Why do you think Dr Shen wants me to get another MRI if that one was clear and my symptoms haven't changed or gotten worse. ? [ more ]
skn69 I had an MRI for my back and they found something else behind the pouch...it works both ways...it sees what is there...up to the tech to read it all...and tell you what is going on. Sharon [ more ]
Brewbirds Yes a pelvic MRI covers it all. Just share your concerns and the testing will be done in one MRI. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain from long car rides and walking-advice needed
M MCH
Scott F It would help clarify things if you can further describe the pain. Is it relieved or changed by a bathroom trip? Does it move, or occur in a specific spot? Does it come and go, or is it constant? Under what circumstances does it go away or improve? Does it start during the car ride, or during the walk? Does it happen every time? [ more ]
Winterberry Pillow across your abdominal area, also try sitting on a semi firm cushion when you are in the car. [ more ]
13 Years & Counting I haven't experienced this, but is the seat belt cutting into your abdomen? If you're not the driver, maybe place a pillow over your abdomen when in the car. Perhaps bumpy rides are worse? I would try to take note of how/when this happens, driver vs passenger and talk with your doctor. Pain of any type is awful! [ more ]
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J-Pouch ForumsGeneral Discussion
To opt for surgery? How does it impact your life afterwards?
LaurbbyxoLaurbbyxo
Yacht Rock My story was very near yours, minus the humira. The GI doc's only have drugs in their toolbox. And they'll keep using a combination of those tools to achieve some manner of results. Yet someday, the side effect from those drugs could do their own damage (think arthritis). Surgeons have another tool that the GI doc's don't really mention all that often....and it can improve your quality of life. Imagine your life w/o the cost of the drugs, keeping track of insurance claims, eating mostly what... [ more ]
13 Years & Counting Hi!! I had my pouch surgery in 1999 when I was 35 and drugs like Humira, Entyvio, etc. were not available. I had no issues to speak of until a few years ago & they've continued on and off. I will say my doctors (I have 2, one in my home state of NJ & one in NYC) both said that if drugs like these were readily available in '99 then there's a good chance I may have been able to avoid surgery. That being said, I was/am happy I had the J-Pouch surgery when I did. However, I also think... [ more ]
lablover My husband was sicker with the meds he was on, plus a year on steroids. He never was in remission. He made the tough decision to get the j-pouch and hasn't looked back (23 years!). That enabled us to have our son (who is 20). He is healthier and does not regret his decision. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown 9 days ago
AimeeAnneAimeeAnne
Yacht Rock The final stretch! It may take some time....but there will come a day when you'll even be surprised with how well the body ends up adapting. Best! [ more ]
AimeeAnne Yeah, it doesn't seem like anything much so I wasn't too worried but want to make sure being that I'm about three hours from my doctor. Thank you for the response and well wishes, I am thrilled to be in the final recovery stage! [ more ]
aka KNKLHEAD I think it takes a while to heal and you should be good. Congrats and best wishes! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Urgency During Braxton Hicks?
MH Mrs. H.
little greeny I was 100% on board with a C section until my high risk OB (that specializes in UC/ j pouches) said that the decision is more fear based than evidence based. Now I'm really torn because ultimately it's my decision. I've been told for a vain all delivery I would have a transverse episiotomy (to prevent tearing) and have a GI surgeon, and anesthesiologist present to make the switch if there was a risk of needing to switch immediately to a C section. The decision seems so hard to make and it's... [ more ]
Annikki My DR said should I should have C-sections as the risk of damaging my j-pouch was too high. I opted for the C-section. I was not going to risk losing it and going back to having an ileostomy. [ more ]
Mrs. H. It is scary...because you are kind of playing the odds. I loved going natural....I think it's healthier for the babies but it is more a risk to you/your output. I'm glad I was able to labour in the bath/shower which I think helped things stretch (and it is party genetics/how you're built too). I was induced at 40 weeks just to ensure that baby didn't get too big (my kids were 8.6 and 8.4). Caesareans are tougher to recover from but scar tissue is an issue but then chances of having post... [ more ]
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J-Pouch ForumsPouchitis
Melamine/Canasa
Funky26Funky26
jeane I h ave never heard of treating pouchitis with canasa. Are you certain you are not dealing with inflammation of the cuff and doctor called it pouchitis? [ more ]
Scott F Funky, mesalamine is often used for cuffitis, but it's an unusual choice for pouchitis. Is there a reason your doctor might be avoiding the standard antibiotic treatment? [ more ]
Kara Fred When I had my jpouch, I did use canasa suppositories, however it was for cuffitis. They did help as soon as I could get over the uncomfortable feeling of a suppository. [ more ]
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J-Pouch ForumsGeneral Discussion
Sleep Deprived
G GraceB
CTB23 Being away in vacation and sleeping through the night. No doggies to deal with. [ more ]
GraceB Update I had to go back on ativan I know it is addictive but I was getting to stressed out. Sleeping better I guess it also helps with my anxiety. Thanks for every ones help. [ more ]
Nice Nurse I never "sleep through the night". I wake some nights every two hours and some 3-4. I am able to get right back to sleep though. If you are talking about Ativan, it is for anxiety and yes, can help you sleep but it is addictive which is why you are having problems being off it. A better option is lomotil. It helps slow the bowel and has a mild narcotic/sleep effect. It is also non addicting. Maybe try that. Best of luck. K [ more ]
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J-Pouch ForumsPouchitis
Side Effects of CIPRO?
GoHeels23GoHeels23
skn69 From what I remember I had ligament problems...it is like they became fragile...I nearly snapped the Achiles tendon, had knee and ankle problems...took a while but once I was off it for good and with some good PT I got past it. Sharon [ more ]
Scott F Goheels, I use the powder. The capsules didn't mix sufficiently in my gut to do the job. I now mix Metamucil and Konsyl 50/50 and shake (not stir) in a mason jar. 50% Metamucil is enough for palatability, and I don't need extra calories. [ more ]
GoHeels23 How do you take your fiber? Mixing or pills? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe pain and spasms
BritBrat88BritBrat88
Carlitos Andantol gel (isothipendyl) or similar in the US. Works like a charm. Put a small amount on your finger and spread around the perianal area. It has an inmediate effect against the intense and sharp butt burn and uncontrollable itching. For spams and and internal pains in your coccyx/tailbone get a prescripcion of Tylex CD (a cousin of morphine) or Arcoxia. They are strong medicines that will make you feel better in each painful episode. Also, try getting a hoose bidet attached to your... [ more ]
Winterberry Hello, Britbrat88. Your pain sounds bad. For the pain of your fissures and burning, have you tried a sitz bath yet? I got mine from Amazon, and they are also available at health care stores or pharmacies. Fill it with very warm water (nothing else, not Epsom or any oils) set it on the toilet and lower yourself into it. Soak until the water cools, and refill. It will bring blood to the area internally and help your fissures heal, and it is very soothing to the burning skin. Also, a portable... [ more ]
J moons The ointments that help with the spasming, straining, fissures, and pain are nifedipine/lidocaine and diltiazem. Thy are compounded medications and prescription only but some hospitals make them in bulk. I get mine at UNC for $60 but I was quoted $120 at a compounding pharmacy. Thy last a long time though. [ more ]
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J-Pouch ForumsGeneral Discussion
UK J Pouchers
ET English Tony
Albannach I'm in the UK and had my j-pouch surgery done in Edinburgh. Excellent care and a first class surgeon with a lot of experience. The UK and US healthcare systems are so different. A lot of the stuff you read by American posters (which gives the impression that there are only a few places/surgeons in America who can do a decent job of j-pouch surgery, and you should be wary of having j-pouch surgery anywhere else than the Cleveland Clinic, etc) just isn't relevant to an NHS context. An NHS... [ more ]
JordySimo I imagine it will have an affect considering the goodness in foods aren't being absorbed as much with you not having a large bowel anymore and also due to the fact everything is coming through your system quicker. I was anaemic before and during my operations and had to take iron tablets with my other medication. I still have a feeling I am anaemic but my surgeon seems happy with my bloods at the moment. [ more ]
Hellbuff I had my take down surgery in july 2015. Still go between 5-8x per day. Take imodium regularly. Some food is ok 1 day but can send me running to loo another day. I am alive which is main thing with no cancer. Have a few problems with anaemia, waiting to see gastro again. Last year i had pillcam which showed ulcerated pouch and problems with duodenum. Wondering if the surgery stops my body retaining iron? Anyone else have this problem? Xx [ more ]
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J-Pouch ForumsHelp! Need advice now!
Looking for a consultant who specialises in j-pouch/crohns/pouchitis (UK)
D _Dan_
Former Member Just to clarify, although I've received treatment at various Hospitals, it's not been due to complications, I sought referral to St Marks for J Pouch Surgery. Before St Marks, I'd only received treatment from two Hospital. [ more ]
kateJames Thanks Strange, your experience is very reassuring. & glad you found such great help eventually! kate [ more ]
George Skordis ❤️
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J-Pouch ForumsPouchitis
Maybe pouchitis?
G greeneyedrobin
Jan Dollar It may also mean that Cipro wasn't the best treatment for you. Unfortunately, it is not an exact science. Jan [ more ]
Scott F This sure sounds like pouchitis. You.may not have been on Cipro quite long enough. You might ask your doctor to test you for C. Diff before starting you back on antibiotics. Florastor doesn't prevent typical pouchitis. It's a yeast-based probiotic that may help prevent C. Diff from developing, especially when on certain antibiotics (like Cipro). Bacterial probiotics like VSL #3 or Align may help prevent or delay pouchitis recurrences. [ more ]
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J-Pouch ForumsK-Pouch Korner
lubricants
hollyfaith76hollyfaith76
lesrich1 At home, I use coconut oil. I keep it in a smaller container in the bathroom. It will solidify. I have traveled with it. I put the container in a ziploc (which was a good thing). It became liquid and leaked a little. But, definitely at home, coconut oil. [ more ]
LuckyLady I use KY gel, available through Amazon, or your local sex shop ) [ more ]
Bodoni I use the store brand at Wall-Mart. Cheapest around. Lube is Lube. Well, unless you take your auto to Jiffy-Lube. That's another story. PS: I do sometimes buy the little packets of Surgilube to keep in the car or in my pocket in case I have to intubate away from home. [ more ]
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J-Pouch ForumsGeneral Discussion
Can you get worms with a j-pouch?
A Albannach
J moons The way to diagnose pinworms is to put a strip of scotch tape over your anal opening and at night when they crawl out they get stuck to the tape. Take one of those in to your pcp. [ more ]
Scott F Most of the pinworm life cycle is in the small intestine, so I'd expect J-pouchers to be as prone to infection as folks with colons. I wouldn't make the diagnosis based on itching alone, though, since seepage and fungal infections can also cause itching. [ more ]
skn69 Why not? I never thought about it but why not? I guess that if you eat unwashed fruits or veggies, uncooked meats or don't wash your hands after whatever you could...I guess Jan is the best one to tell us (or Scott). Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
J-pouch to kock-pouch in Germany
M mamabär
LuckyLady Interested in learning how this was resolved, Mamabär! I live in Germany and just saw Prof. Dr. Kroessen at the Krankenhsus Porz am Rhein, Köln. Because of intubation problems. He does Koch pouches & is very knowledgeable [ more ]
skn69 Mamabar, You may have a pouch torsion (twisted pouch that has it twisted on its side or even upside down into a hernia or it may have fallen off of the wall (slipped down)) which means that as long as it is not full up it doesn't leak but once it starts to fill and gets heavy, it pulls on the valve and pops it open and so it leaks...you need them to do an exam under x-ray so that they can get a definitive answer as to what is wrong with it...if it has fallen, twisted or herniated around it... [ more ]
mamabär Hello, I'm completely leak .... I hope. Otherwise I would have been a big problem. My Kock, deflates 3 ​​to 4 times a day by itself. In between, nothing comes out. What should be the precipitation on the day (ml)? I'm very insecure. When a valve is leaking ... why it does not run over the whole day? Can it happen again because that the valve completely closes or bends so that nothing comes out? Who had yet to do so and can tell me? greetings, Mamabär [ more ]
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J-Pouch ForumsK-Pouch Korner
34 1/2 years with my Kock Pouch....
J Jasmine 2
LuckyLady I'm posting all over the place today! Thanks to this site, SKN69 & Creampuff, I found a German surgeon who does K-pouches. I met him on Tuesday and was favourably impressed. I was quite desperate at the time. My recent crisis is over, but it was such a relief to have happened on this site while in hospital and discover other older K- pouchers have had the same issue. Now I also have knowledgeable help at hand if the problem returns. [ more ]
Arlene B66 Thank you so much Vanessa & Jasmine you don't know how wonderful it is to connect to someone in the same boat as you! Happy New Year! [ more ]
vanessavy I stand up and bend over too with the cath pointing in the toilet. Everything comes flying out that way. If I sit on the toilet I am there too long. I want in and out in 2 minutes. [ more ]
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J-Pouch ForumsGeneral Discussion
Sulfasalazine/Azulfidine
AnnikkiAnnikki
Annikki Thank you for providing this information as it might be helpful to other. I am on no medications for my j-pouch with no pouch issues either. [ more ]
MichiganLinda Please be careful with cortisone injections and steroids in general if you take Cipro for pouchitis. I had been on cipro continuously since December 2015 with pretty good control of the pouchitis. I had gotten steroid injections in my left foot for Plantar Fasciitis. In may of 2016 I received an injection and a week later had a tendon in that foot tear. It was determined that it was a reaction between the cipro and steroid injection and I was advised to not get anymore injections and avoid... [ more ]
Annikki Thanks Jan. I knew it would be about 7-10 days for the shot. the Dr also says the disease often comes and goes. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Breastfeeding Tips
M Mallory
Annikki No. I haven't need to take anything for my j-pouch, so I was not on any medications. [ more ]
Mallory @Annikki Thanks for the information! I think I will see how the first few days go and then supplement if needed. I assumed dehydration would be an issue so it's nice to now I am not the only one who struggles with that. Did you take any medicine for your jpouch while breastfeeding? [ more ]
Annikki I had trouble with making milk after my first was born. Drink lots of water. Dehydration can impact water supply. My poor baby was starving and none of the dr's or health professionals would not even suggest formula. Finally after 3 months of hell and him not gaining much weight I started supplementing with formula...happy fed baby made for happy mom. I dried up completely by the time he was 6 months. Second baby I decided that I would supplement with formula right from the start. Much less... [ more ]
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J-Pouch ForumsGeneral Discussion
Loose stools since low carb
S SFF
SFF So it's been 3 days of returning to my regular diet and things are much better. System seems back to normal. Up less at night and no leakage! Definitely have learned that my system cannot handle wild, drastic changes in diet. From now on if I need to do anything for weight management it will be old school caloric intake control. Thanks for the replies and for confirming what I thought may have been going on. [ more ]
averyo99 I am sensitive to gluten but I still eat quite a few carbs. I eat a lot of potatoes, sweet potatoes, fruits high in carbs, rice and rice products, and sometimes gluten free bread and pasta. But I agree with Scott, if you felt better on your previous diet than that it probably the diet for you. You can still eat a healthy lifestyle and hopefully maintain your weight loss with some carbs. [ more ]
SFF Yup I think that will be the answer. Going to give it a couple of days but I think you're right. Thanks [ more ]
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J-Pouch ForumsK-Pouch Korner
BCIR Help in Europe?
C Creampuff
LuckyLady I saw Prof.Dr. Kroesen yesterday. It looks as if the valve is no longer inflamed and he inserted a catheter with no problem so I am hoping that things will return to normal for a while. I really liked this surgeon - personable, helpful, knowledgeable. He has had several patients with 'older' pouches who have had similar intubation issues - it is apparently not uncommon (and when you think of it - 30+ years of wear and tear)! Two of his recent patients had their pouches created by Dr. Koch... [ more ]
LuckyLady My Gastroenterologist met Dr. Kroesen at a conference in Berlin last week and spoke to him about my problems. He can, apparently, replace the valve if necessary and has also had good results wth 'stretching' the narrow spots. Can't wait to meet him next month! [ more ]
Creampuff Hi Pam, I'm so glad for you. Peace of mind is priceless. I have read a good amount on him and will be making an appointment with him and Dr. Ecker myself. I know I'll eventually need a surgery and I want to meet them both to see who I feel most comfortable with. keep us posted! [ more ]
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J-Pouch ForumsK-Pouch Korner
Surgeon names for K-pouch in Canada
RM Rich M
LuckyLady Having similar problems - Was your issue solved? [ more ]
Dave1962 Hi Sharon yes he is still practicing at his Toronto clinic. Personally I havent seen him in about 10 yrs, he has 3 other clinics that have 8-10 surgeons in each. Not sure if they still perform K pouches. I am sure it is a nipple slip or twist as I am having trouble but would rather get it checked sooner than later. I also occasionally get a small amount of gas escaping when very full and I move the wrong way. It used to take me less than a minute to empty, now it takes me about 10 mins just... [ more ]
skn69 Hi Dave, Did Dr Rudd do your k pouch in the early 70's? I had heard about him and his clinic way back then but had never met him...does he still practice? Do they still do the k pouch in his clinics? Generally when the vavle starts to become inaccessible it can be: 1 A valve twist or slippage. Is it 'sticking its tounge out at you? Does it look like something has changed? 2 The pouch has slipped off of the wall. Rare in later years but it can happen. It can be put back up using laporoscopic... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch and Crohn's
J jlmathis69
Nish123 i had the same problem before take down . After i had a loop ileostomy , i started getting abdominal cramping so severe that my stoma would just flush with the skin or would sink in . i had to go to ER every few days and for sunken stoma and my pouch would get functional . As i was loosing weight again , my surgeon decided to take down my ileostomy .At the time of surgery they figured that i had lot of adhesions which was the cause of cramping . Not sure if thats what causing leaks in your... [ more ]
Jan Dollar If you can hang with the loop ileostomy for now, it is better than getting an end ileostomy, unless you plan to stick with it in the long term. The readon is that there is a school of thought that surgery can trigger Crohn's flares. So, if you are doing well, Crohn's-wise, it is best to leave sleeping dogs lie, so to speak. Have you tried a convex system for your loop ostomy? They ten to be more flush and difficult to get a good seal. Also, Eakins seals are talked about as a good option for... [ more ]
BillV If your j pouch and anal sphincter are in good condition and you were satisfied with your pouch before problems developed, I would opt to keep it. As regards your temporary ileo, I suggest you be seen by a good ostomy care nurse who could get you set up with supplies and techniques that will make having it manageable until takedown. You may also wish to check out the UOAA Message board for suggestions that could resolve your problem. I would consider an end ileo at this time as a last resort. [ more ]
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J-Pouch ForumsHelp! Need advice now!
NIghttime Leakage
BH Becky Heredia
Rafael ❤️
Nish123 Thanks Jan Dollar . i will call my doctor tomorrow and see what they say . The problem is that i had my IBD specialist and surgeon in new york .i moved to texas shortly after take down and starting again with a new doctor has been a problem [ more ]
Jan Dollar NISH123, you may have both cuffitis and pouchitis now. In that case, antibiotics would be appropriate. Also true if you have bacterial overgrowth. If it has been a long time since you saw your doc, a new exam is in order. Otherwise, a phone call may get you a script for an antibiotic. If it is ineffective, then you may have more to discuss at a face-to-face appointment. My GI doc is super busy, so he is very responsive to emails and calls. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Anal fistula - suggestions?
PJ69PJ69
CTBarrister I am dealing with an apparent anal fistula right now which is not leaking and appears to be closed, although I had a 2 week stretch of leakage back in February when it apparently drained and closed. I saw a colorectal surgeon who said due to the proximity to the anus he would be very reluctant to do surgery due to potential weakening of the anal sphincter and incontinence. If you already had two surgeries on the fistula you have likely weakened the muscles in the area and the advice Mayo... [ more ]
Jeffsmom Welcome. As long as you are from the NYC area, I'm going to suggest Dr. Afanah, I think that's how you spell it. He is at Weill Cornell and is doing research on anal fistulias. I know this because my son had an internal one, from his small intestine leading to an abscess in his pelvic cavity. It's a long long story and we had a boat load of surgeons and doctors involved, Dr. Afanah being one of them. He is a wonderful doctor, and truly an all around nice guy. PM me for more information if... [ more ]
Scott F Hi, and welcome! Can you clarify what you mean when you write that Lomotil/Imodium are "not a great solution?" Do they work poorly for you, or is there some other issue with them? [ more ]
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J-Pouch ForumsGeneral Discussion
SLIGHT BLOCKAGE, PLEASE HELP
MIKEEYMIKEEY
MIKEEY Thanks so much, for one day I had only liquids and next day very light diet but still having little out put but pain and distention gone. Must stay on light diet for a few days, just wish I had more output. \My first blockage, I was so scared. Thank you again nice nurse for your response. Have a good day and God Bless. [ more ]
Nice Nurse Hey Mikee, Just wondering how you are? I didn't see this till today, I hope you are better. I used to get a lot of obstructions and was hospitalized several times. When I feel one starting up and I haven't pooped in awhile and start getting pain, I use a vibrator on the spot that hurts. It really works! Also, drink grape juice, walk and lots of water. Avoid beans, nuts, seeds. Best of luck, K [ more ]
MIKEEY Just wonder if anyone can answer this. A few hours ago I passed maybe 10 maybe 1 inch blocks of stool, not a big amount, now just getting brownish water, still have distention and some pain, just wondered if this means the blockage is over? Never threw up or got nausea. Please help if you might know the answer, still on fluids. [ more ]
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J-Pouch ForumsPouchitis
Pepto bismal!
V Virdent
cassiecass How many times a day should I take pepto bismol. Thanks for any input Cassiecasse [ more ]
CTBarrister Saraheliza- I am not sure you are picking the greatest time to be trying to get pregnant. I would try to bring the pouchitis under control first. For me pouchitis is controlled with antibiotics, and I have had to take them continuously for 20 years because nothing else, alone, works. I am in the same boat as Scott. If you need to join us in that boat, I would talk to your Docs about antibiotics/PB impacting on the pregnancy if you must stay on the meds. Hopefully you can get it cleared up... [ more ]
Scott F What's worked for me (quite well) has been to stay on the antibiotics. I'd prefer to be medication-free, but that doesn't work for me. Unfortunately many of the antibiotics aren't great to use during pregnancy. Be careful - Pepto Bismol is also a potential problem during pregnancy, in the same risk category as Cipro. [ more ]
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J-Pouch ForumsHelp! Need advice now!
new j-pouch not emptying, help please
kateJameskateJames
kateJames Dear Winterberry, thanks for your encouragement, much appreciated! He's tried every position & is so fed up now it's not cool for me to suggest any more. We will keep on pressing for some answers, it's an uphill climb though so your support is great. Hope you're well & thanks again, will report back soon with news I hope kate [ more ]
Winterberry Hello, Kate. See if leaning back toward the toilet tank will help to straighten out / lengthen the way the j pouch sits in the pelvis. It sits on a bit of curve. Sometimes leaning back, as if reclining gently on a sofa, helps to lengthen that curve and help gravity take over. Sometimes sitting in a very, very warm sitz bath helps relax and open the sphincter muscle too. Don't give up, don't be defeated by a brush-off. If his doctor or surgeon dismisses it, keep asking. Go in with a list of... [ more ]
JanW2 ❤️
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J-Pouch ForumsHelp! Need advice now!
Not able to evacuate
JR Jackie R
Jan Dollar I'm glad you called your doctor, as it sounds like you are obstructed. Hopefully it is just too much slowing and fiber, and a good cleanout is all you need. Some of us develop an anal stricture over time, and your doctor can easily tell is a finger cannot pass through your suture area inside. You could also have issues higher up. Gopefully, you've stopped any bowel slowers and fiber and increased your fluids in the meantime. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Loud digestive noises.
J jkdwyer53
Borislav tomorrow when eat breakfeast after finished breakfeast is going very loudly if i not go to bathroom to empty jpouch is make loudly and no want to stop. after every eat i have loudly sounds and when go to sleep to..is problem? all? and can be takedown this sound? [ more ]
Spooky 6 years out from surgery and I still have this problem from time to time. It's more a nuisance than anything else, and I tend to make light of it these days. The noise tends to come mainly from around the old stoma site. The most likely explanation, at least in my case, is that it's adhesions (I've been told I have them), and in that sense there isn't much I can do about it. I've asked both my surgeon and GI and none of them seem at all concerned; seemingly it's more the norm than the... [ more ]
nuggy I have this problem every day. Usually about 1-2 pm it starts. By the time I leave work my stomach is twice the size and am in pain. I think maybe its because I am standing all day. On my days off this does not happen because I can sit or lay and have access to the bathroom. it doesn't matter if I eat or don't eat - It still happens [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch removed. Not supposed to sit for 2 weeks?
RE5RE5
TE Marie The stitches healed but I had a small opening, where my rectal stump use to be, that took 8 months to heal up completely. I used a great seat cushion in the car and sat on one cheek if I had to sit on something hard, like a chair at a wedding reception. My surgeon at Mayo's didn't tell me to avoid sitting all together. I think you will automatically change the way you are sitting due to the related pain/discomfort. Also my local stoma nurse told me to not sit too much. I think your doctor is... [ more ]
skn69 Doughnut... I sat on an inflatable doughnut for about a month...they used a hemovac on me for about 10 days to suction out the fluid and then I healed up slowly on my own but felt like I got rammed with a blunt object... The doughnut allowed me to sit and not put pressure on the area. There were no rules or regulations it was just what worked for me. Sharon [ more ]
RE5 Finally got ahold of the surgeon. He basically told me that I needed to keep all pressure of the butt to ensure it heals properly. Apparently this is the only surgeon that thinks that way since everyone on here says they sat after? I'll be honest I've kinda ignored that completely and I've been sitting on pillows and what not. Laying down for weeks is pretty much impossible for me since I'm a really active guy. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
4 day stomach upset- advice needed !
B Busybee
Busybee Hi Jan, .thanks for your reply. The only med I am on other than codeine for pouch control is lansoprazole 60mg daily. Been on that for years- controls extreme stomach acid. When they didn't give it me in hospital at takedown phase that plus extreme stress on my GI system (multiple complications ) I developed internal bleed- stomach and duodenal ulcers. Had it tested since and must remain on them maybe a lower dose later. I spoke to a Gp last week who has sent a stool sample for testing to... [ more ]
Jan Dollar You haven't been taking NSAIDs for sonething unrelated to your j-pouch, have you? If so, you need to stop them to see if that is the reason for your gut symptoms. Even if you do not have IBD, NSAIDs are to be suspected whenever you have new and persistent gut symptoms. The fact that you are improved points to a GI bug, so hopefully it is much ado abouth nothing. Jan [ more ]
CTB23 ❤️
See all 9 replies...
J-Pouch ForumsGeneral Discussion
small amount of bleeding from rectal area
V vickiew
Jan Dollar I am moving this topic to General Discussion, as it does not belng in the Site Help forum. Jan [ more ]
vickiew Thanks for the input. I kind of wondered about the possibility of an internal hemorrhoid. I also think I may have made things worse by having some candy with nuts in it in the last month or so. Ever since I had a hysterectomy 4 yrs ago, the gas problem has been worse than normal -- simethicone helps a lot when I take it. I am going to try to "clean-up my diet a little, and re-adjust my immodium/lomotil doses and see if that helps, if not, will try to see an MD. Unfortunately my surgeon... [ more ]
Winterberry Hello, Vicki. Could it be an internal hemorrhoid or a skin tag? Or it could be from straining or even a hard stool. Even gas that is explosive can cause a bit of stress (stretch) in an already stressed area. Have you eaten anything that could irritate on the way out? If you have regular pouchoscopy it might show what the issue is. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Walking out of hospital
M Mcvm
Jan Dollar Food for thought: Vomiting after GI surgery when you are not passing gas rectally is an indication of obstruction. This can either be a physical obstruction or paralyzed bowel. There are numerous causes for this, some of which can become a surgical emergency and life threatening. The waiting game can be very boring and monotonous, but it is for your safety that you are kept in the hospital. I think the only thing that might have been done wrong in this case, is poor communication with the... [ more ]
CTB23 Hospital stays can be frustrating, however, it is the place to be if any complications arise. Better to stay until it is safe to go home than have to be readmitted, which can be even more costly and frustrating! [ more ]
Mcvm Yea he would of collapsed at home instead of a hospital [ more ]
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J-Pouch ForumsPouchitis
Green Stool
R Rocket
nys An older post....but I get this when I eat very little for a couple days. I guess the bile has nothing to mix with. [ more ]
Rocket My doctor said not to take Probiotics until I finish all the meds. On this site, I have seen that I should wait 3 or 4 hrs. What do you all think? [ more ]
Rocket Thanks Jan. I hope so because as a member of the Knights of Columbus here in NJ, I am needed for kitchen help to cook. Thankfully, I am not the lead chef this time since its a Latin Dinner. The dinner is this Saturday, with all the prep work done the day before and I love to be a part of it. Back in April, I was the lead chef and made two huge pots of Meat and Marinara Sauce that fed 297 people, although there was enough sauce to feed more then 400. Can't take all the credit since I use... [ more ]
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J-Pouch ForumsGeneral Discussion
Recommendations for pad at night
M MCH
aka KNKLHEAD I think these may be appropriate for many of us, and just discovered them. Of course, I'm not using them "as designed," but really like the coverage and the fact they are not uncomfortable in the least. Check out Depends Men's Shields Light. They are a triangular shape that seems to work very well for me! Just insert them backwards. [ more ]
dds There are pads for bowel leakage. They are called butterfly pads. You can find it on Amazon and also at Wal-Mart. They are like 7dollar's. [ more ]
CeeeeCeeee Walmart has Super sized Maxi Pads for a little over $3.00 for 48. They work for me. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Doctor putting me on Cipro and Flagyl again ...
Anthony1977Anthony1977
claire Im sorry for the alarmist post but I wish I had been made aware. Please consider asking your doctor for a safer alternative!! Cipro is very far from a safe drug I'm sorry. You may want to research the side effects for yourself so that you can give your doctor informed consent and know that you are taking a drug which can potentially leave you with long term or even permanent pain and disability. If you search my previous posts they are full of links or just look up flouroquinolone toxicity,... [ more ]
Anthony1977 thanks, scott ... I was just more concerned about the time since I last took it and now. Lol, definitely not into using it recreationally. [ more ]
Scott F I've been on Cipro and Flagyl for years. I wouldn't use it recreationally, but you're unlikely to have a problem in two weeks of use. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Weight Gain
J J.T.
Annikki Sounds like you are doing everything you can. I can send you some of my extra weight [ more ]
Scott F If you don't have a dairy issue beyond lactose intolerance then hard cheeses should be fine for you. Just a thought, in case it helps. [ more ]
J.T. Thanks for your quick response Annikki! I appreciate it. I do eat carbs everyday. I purchase gluten-free breads made with potato, rice & corn, and have at least 2 slices (sometimes 6) each day for sandwiches etc. I eat cornflakes with coconut milk or gluten-free pancakes every morning. Along with a meat, I eat brown-rice pasta or white rice several times per week for lunch or dinner. In between meals, I eat Lucy's gluten-free cookies, corn chips, & potato chips. I drown a lot of my... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Stelara
S Susan33
J.T. Correct, nothing significant yet! [ more ]
J moons JT, so you've been Stelara 4 months with no improvement? [ more ]
J.T. I started Stelara end of November 2016 with a hospital infusion. I then self injected at home in January & March. I saw minimal improvement in March. Hoping the May injection will be dramatic improvement. Like you, I tried Entyvio & had no luck. I also had no luck with Remicade, Humira, and Cimzia. I am taking methotrexate with the Stelara to help with antibodies. Cipro works but I am hoping Stelara can allow me to get off antibiotics so I can rebuild my gut microbiome. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
pouchitis
K kemp
kemp thank you so much for your input. Yes, I had a sigmoid and everything was fine. I am so grateful>> Thanks again. [ more ]
Funky26 I had my final dropdown surgery 2 years ago and have had very few problems with my J pouch. I recently had pouchitis and i knew it because of the cramps, straining hard to make a bowel movement and only a little came out, had some red blood and my tail bone/rectum area hurt so bad it was hard to sit. I was put on Cipro, anent biotic plus a probiotic and felt better after 2 weeks. Talk to your surgeon and have a sigmoidoscopy so they can look inside the pouch area to see if their are... [ more ]
Winterberry Hello, Kemp. Yes, j pouchers can get viruses, flu, come down with a cold. I have a bad cold now so I make sure to keep hydrated by drinking soup, eating fresh oranges, and adding more sea salt on my meals than usual to maintain electrolytes and potassium levels. If you are running around moving house you have to make sure you eat properly and regularly and drink lots fluids, not just plain water, which goes right through you making things worse. Dehydration can cause dizziness, fuzzy brain,... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Nights are miserable
JourneyToWellnessJourneyToWellness
JourneyToWellness Thanks Scott and Avery! The more I learn, it seems each of us responds differently and I guess it's going to be a lot of trial and error. It's helpful to consider what works for others to get ideas for myself so thank you! [ more ]
averyo99 I do not take Imodium although I know many people have had great success. We are all individual so not taking the Imodium could definitely be something to experiment with. For example, I know VSL#3 is a great probiotic but I have stopped taking it and have had fewer stools and felt better. Weird. I'm taking a different probiotic with better success. When things are very active I take Metamucil twice a day, once in the morning and once at night. [ more ]
Scott F I use Metamucil powder with breakfast and dinner. I only use a bowel slower (I prefer Lomotil over Imodium) at bedtime, when slowing things down is most important to me. [ more ]
See all 9 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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