Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
fiber - blood sugar?
I iHateColitis
Jan Dollar Thank you Scott. Well stated. So here's the point: You can have a transit time of an hour (time from eating to bowel movement), yet have adequate digestion of nutrients. Digestion and absorption of nutrients depends largely upon the health and length of your small intestine, proper pH levels, and presence of enzymes and hormones. Slower digestion helps mediate spikes in blood sugar (important for diabetics). Slower transit time might allow for better digestion if your ability to digest is... [ more ]
Scott F Transit time is the time it takes from putting food into your mouth until its residue gets to the finish line. Digestion is the mostly chemical processes of turning food into molecules that can be absorbed through the gut into the blood. [ more ]
iHateColitis What is the distinction between transit time and digestion? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Hernia surgery inquiry...
H Halo52208
lhh65 Hi: When I had incisional hernia repair in 2012, my surgeon who has done by J-pouch and reversal did a plastics repair when closing...very much improving the huge scar that had been there. I was not that upset with it in the first place, but he seemed quite happy with the results. So he was a GI surgeon, not a 'plastic surgeon'. [ more ]
Halo52208 Thanks [ more ]
Jan Dollar Just to add to Scott's note: while the insurance company does not care who performs a hernia repair, they are unlikely to pay the additional fee for a specialty surgeon. They will pay the reasonable/customary fee for a general surgeon, unless there is a specific need. Plastics coverage is generally reserved for facial repairs and hand/foot injuries, as they are considered medically necessary. Abdominal repairs with plastic surgery are considered cosmetic and are not covered. Jan [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Treating pouchitis is treating a symptom, not the problem
H Halo52208
Halo52208 My new GI says 30-40% of jpouchers get pouchitis. He said it's because our small intestines are not meant to hold stool. I asked why some people have no problems and others do? He didn't know why. I did get put on Cefindir to kill the bacteria and Enteragam. So we will see how it goes. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Urination after surgery
W Willie
Jan Dollar Sounds like you are not emptying the bladder compketely, so are retaining urine. It could be from trauma/swelling around those nerves. If so, it should improve over the next few weeks. Never the less, you should report this to your doctor, as it could be an infection. Sometimes you can get urethritis from the urinary catheter used post op. The inflammation can cause bladder retention. Jan [ more ]
Willie Thanks for the replies. There is no foul smell or odd color, everything is normal there. Just the urge to always pee. I will give it a little longer to see if it is just some swelling from surgery playing with my bladder. [ more ]
Former Member Before you begin to consume copious amounts fluids, cranberry juice or otherwise, ensure, that from your normal intake of fluids, whether water, tea, coffee or whatever, that you're able to pass water with good flow, without straining and no dribbles. If flow is good/normal and no uncontrollable stopping n starting, then you're good to go. After my takedown surgery, whilst still in Hospital, I developed an enlarged prostate, which with the catheter removed, I was unable to pass water, which... [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
(Florastor Vs Jarrow) Vs VSL #3
DJ HDJ H
Scott F I take 4 DS packets per day - a maximum dose. In my case, at least, that seems to be what it takes. Fortunately I persuaded my reluctant insurance company to cover it (with a little help from the state). [ more ]
palm55152 ty I appreciate that. I have another dr apt tomorrow. I have a feeling I have a second infection not from pouchitis we shall see [ more ]
DJ H I've tried anywhere from the regular dosage (half a DS dosage) to two DS dosages in a day. I never noticed any difference. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Bleeding and no other symptoms beside being exhausted.
C canlafre
dcpropilot Hi Canlafre, I just had an appointment with Dr. Holubar at Dartmouth after Dr. Murray retired (Dr. Murray was the one who did my jpouch surgery in 2009). I highly recommend Dr. Holubar. Very good experience so far with him as my new doctor. [ more ]
GinLyn DON'T FEEL GUILTY! We are own best advocates. Think of it this way: you are helping them do their jobs properly and care for you adequately. I echo Jan: I did have this type of bleeding once and it was a burst vessel which required cauterization (which didn't hurt, fyi). But do ask for an anemia check and do push to get to the bottom of this. Mine got so bad it required a week's hospital stay and a blood transfusion -- you don't want that! Best, Gin [ more ]
Angie Wilson Be sure you are checking for anemia (I'm sure you are) - my sister went thru this with her pouch a few years back - finally they found a problem elsewhere - she had to get IV blood infusions and the entire thing scared her to death....but the good news it- after finally going to C. Clinic - she got it fixed and is doing great. It is awful to have to start over with a new doctor - hate it when that happens...there was a period of time when I wrote it all down - typed it- and just handed my... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Butt burn
M Meli
Kahuna Lou I'm 13 months out from takedown and at 10 months, my butt-burn (and other issues) *finally* receded! I have issues now when I eat the wrong foods, but overall I'm about as close to my new normal as I can be. So, hang in there. Unless you have additional health issues over and above, there is hope. I'm now feeling the best I've felt in almost 16 years. [ more ]
Meli Your story, wow!! You have such a great attitude and thank you for that!! You have given great advise. Thank you for replying back. [ more ]
deweyj my pouchitis morphed from occurring about every 18 months to every 3 months. so my new doc, I had relocated to the west coast, clinically diagnosed me with crohns, wanted to put me on Remicade. Remicade back then about 10 years ago was a relatively new med and while I heard good things, I was also reluctant to go on a med for the duration. kind of got used to living life without meds. maybe why I quit the Metamucil too, I don't even recall making that active choice. anyways we tried rotating... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Ornidazole, Tinidazole - experiences, knowledge?
deweyjdeweyj
LORI726 Shen also put me on Tindamax. It was way better than flagyl for me!! I was on it for about 5 years with no side effects. I despise flagyl and all its yuckiness. Still no drinking alcohol but I never felt like drinking anyway when my insides were awry!! [ more ]
Pouchomarx I cant take flagyl, the taste and ongoing nausea gets to be too much, Tindamax causes no issues for me. [ more ]
deweyj update for anyone curious. apparently Ornidazole is not available in the United States, much to the surprise of my doctor. So she wrote script for 2000mg of Tinidazole in a blast form, ie 1000mg per day for 2 days. The good news for about 5 days everything calmed down, I wasn't having nightly accidents, I actually decreased my frequency around the edges, and while clearly I could sense the metallic taste almost immediately after taking the 1000mgs each day, it wasn't overbearing and by day 3... [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Severe butt burn with bleeding please help
Mema 1Mema 1
Mema 1 Thanks for the reply! Yes the blood is bright red and I peeked, the skin is quite broken I think because I've been leaking somewhat it must be burning the skin. I took numerous soaks yesterday and it seems a bit better today. I'll be careful as far as food goes for the next few days...thanks again. [ more ]
deweyj you likely already have, but if not, stop eating solids. when things get whacked going to clear liquids is my default option. is the blood bright red? based on your comment that you are straining I am going to guess that you have hemmerhoids maybe and that's the blood? in which case is it really butt burn or hemmerhoidal discomfort? if you bleed enough that you begin to get dizzy, light headed, have trouble breathing, get thee to a hospital and fast. I would also candidly call your docs on... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Question on VSL 3
S Shainy
Scott F Just a VSL coverage update for 2016: My successful VSL appeal had covered me through the end of 2015. I started new health insurance in January (thank goodness for the Affordable Care Act!), and they immediately denied coverage of my VSL #3 DS prescription. I appealed to the insurance company, and they again denied coverage. I filed a medical necessity complaint with the Maryland Insurance Administration (each state has an insurance regulator), and this time the insurance company caved... [ more ]
lablover It helps my husband to stave off pouchitis. He takes it with the juice I make every morning. Also, our insurance covers it.. [ more ]
Scott F Not everyone gets benefit from probiotics, and some people do have a bad reaction. sudie, perhaps you have a dairy allergy, which is often a stronger reaction than lactose intolerance. [ more ]
See all 21 replies...
J-Pouch ForumsOstomy & Skin
What's With This Paper Thin, Non-Perforated Toilet Paper?
LambiepieLambiepie
Mysticobra Yep... I work outside. Two pairs of longjohns. Coveralls. Sweatshirt. And a heavy jacket. But... It's better now without a pouch. I go less often that's for sure. But sometimes it's hard to tell how full it is under all that. Ha... Sometimes I go get all that off and nothing is in there. Felt like it. But all that off and on wears ya down when your not in tip top shape after all that has happened. But I am getting the routine down pretty good. All I need is a bottle to rinse. Toilet paper of... [ more ]
Lambiepie Bill, you've got a point. I guess it's all in the perspective. Richard, I do the prep work, too, but it's exhausting, especially in the winter when clothing is thicker and layered. My FRIENDS use this TP, too. They have colons. [ more ]
Mysticobra I know exactly what you mean. They use it where I work! Terrible. I need three arms! But seeing how that won't happen I just tear some up prior to doing my business. But... You have to check first to see what's there. Just another step NOT to forget. Lol. It is a bit frustrating I must say. Richard. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Fiber in ones diet
BA Bill A
Jan Dollar It is highly individual. You can increase it as you wish until you get the stool consistency you desire. The key is gradual adjustments. You just don't want stool so thick you cannot pass it. Same is true for weaning from morphine. Jan [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Cleveland Clinic
J Joanm
Pouchomarx Hello, yes I dealt with my sinus for over a few years.Went back to an ileostomy for over two years. Dr Shen and my surgeon tried to fix it a few times and all failed. It was coming from rear of pouch back into my small bowel. I also ended up with a tip of jpouch leak that gave me a spinal infection. Dr Remzi redid my entire pouch in October. It went very well even though it was a long complex surgery, 8 hours. I was in hospital for 9 days due to some minor complications but I was back to... [ more ]
n/a Joan, are they doing a scope, or an "exam under anesthesia"? I just wanted you to be aware that if it is an EUA, it's pretty much a 5-6 hr. + affair. They can't tell you the time it will be until the day before the procedure due to complicated scheduling issues. If they gave you a number to call the day before to find out the time, call very early, and/or let the surgeon's assistant know now that you would like to get in very early to have it done. They can't guarantee anything, but it's... [ more ]
Joanm Thank you, Jan for your quick reply. I really didn't know exactly what a sinus was when the nurse said that is what they found, but I asked if it was literally like a sinus cavity in your head, a space, but it should not be there and she said yes. She said they can form at the time of surgery or anytime after. The nurse I spoke to was extremely thorough and patient with my questions and went on to explain kind of the worse case scenario if in fact I would need reconstruction or a total... [ more ]
See all 24 replies...
J-Pouch ForumsGeneral Discussion
Scope
NS Nora S.
Nora S. Thanks for the great replies! I repeatedly told them that I have no colon. I understand being cleaned out and if I don't eat and use an enema, that should do it. I'm just so hesitant to use any laxatives. I got a call back and they said that this is the prep they use on lots of people with j pouches. I said I'd do the enemas, but not the laxatives, period! So, we will see. Nora [ more ]
deweyj yikes. how experienced is your new GI with jpouches? that by itself might be the problem. that said, I have heard that CC docs, Bo Shen in particular requires a rigorous cleanse, as he apparently has had problems in the past. but I used to do as Jan did, clears the day prior, then a Fleet Enema the morning of. but my doc assured me that I only need to do a Fleet Enema so over time as I have to have frequent dilation pouchoscopys I have halted the torture of clears the day prior. its the ONE... [ more ]
Jan Dollar I do clear liquids the day before and tap water enemas 'til clear before leaving the house. I've had some GIs tell me to drink mag citrate. It did not hurt me, but it was overkill. It sounds like the staff is giving you the standard prep for a flex sig. So here is what I would do. I'd call the GI's office back and ask for clarification FROM THE DOCTOR . Explain that you have no colon or rectum and are having an examination of an ileoanal pouch. Also explain that your surgeon cautioned you... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
5 years on since jpouch
S superfannypack
Former Member Crazy1.... Only you can decide whether to opt for j pouch or not, however, from my own experience to opt for the J pouch was the best decision I've ever made. My surgery was carried out in 3 steps and each proceedure was via open surgery. My colon removal was an emergency proceedure due to a UC flare up years earlier. After recovery, it was believed I had Crohns rather than UC and therefore not a candidate for J pouch Surgery, although I believe such a mandate is no longer the case. After... [ more ]
Former Member My dehydration wasn't due to high output; I had a temporay loop ileostomy, which diverted my output away from my newly created J pouch, into the colostomy bag whilst it healed. Before J pouch surgery, my body had become accustomed to absorbing fluid via the small intestine albeit not sufficiently; now a proportion of my small intestine had been constructed into a j pouch and I wasn't absorbing a sufficient amount of fluids from what remained of the small intestine, regardless of what I was ... [ more ]
superfannypack Strange:Sounds like a blessing in disguise, you having to get that IV drip. You learned what you were missing at that moment. It's always a risk that high frequency equates to excess electrolytes loss. Crazy1: This sounds like my story. I remember never wanting to risk having colitis or surgery issues again and refusing the jpouch. Why go through even more risk when the ostomy is enough, right? We all are different but I still thank my father every day for pushing me in the other direction. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Severe bowel pain/diarrhea, in Vanuatu taken to clinic in ambulance
J JoVic
Jan Dollar Jovic, funny how it works like that sometimes. You get incredibly sick out of the blue, and try as they might, they can't find the culprit. A few years back I wound up in the hospital in septic shock. They thought maybe the flu virus, but PCR testing ruled that out. Blood cultures were negative. They bombarded me with multiple IV antibiotics and antivirals and I was fine in a few days. Go figure... Thank goodness for modern medicine to support my body until this thing resolved. Did you... [ more ]
TE Marie I'm glad you are doing so much better! My GI told me that the dosage of antibiotics he prescribed for pouchitis was less than prescribed for other infections in our bodies. I was given triple the dose of Augmenten for a UTI than he'd prescribed for pouchitis. I have been on Flagyl, Augmenten and Xifaxan for pouchitis in the past. (I can't take Cipro and had to stop Flagyl. Too bad as those seem to be preferred for pouchitis.) [ more ]
Angie Wilson Glad to hear things are on the mend. So sorry you went through this and I hope you can report to us soon that you are totally well...as well as we can be with our pouch - which during many years is really, really well! Glad your pouch looks good. Hang in there! [ more ]
See all 17 replies...
J-Pouch ForumsPouchitis
Rifaximin - possible not to build up resistance to?
BM boy's mom
deweyj Candidly it might have been an overzealous reaction to pair methotrexate to ward potential reaction given his stark reaction to Remicade, but given the circumstances perhaps understandable. But as Jan already described the more violent reactions tend to happen with Remicade because of the mouse component. Regardless of water under the bridge. I wholeheartedly agree with some of what you seem to be expressing. I would personally discourage eliminating biologic therapies if they are working. I... [ more ]
Jan Dollar There are other biologics than Humira and Remicade. Remicade is the main one that allergic reactions and antibody production is a concern. This is because it is based on mouse protein (it is on of the earliest biologics). All the others are fully humanized proteins (except Enbrel, which isn't for IBD anyway). Failure of one biologic does not mean you will fail others. But, even if you do, you can just keep trying for better results. I am on my fourth biologic, and never even tried Remicade. [ more ]
boy's mom Responding re the remicade - My son had a severe allergic reaction to remicade ( went by ambulance from dr's office to hospital). So that is another factor that worries me about trying to go off humira - if he needed to go back on serious drugs - few options. We are trying him off methotextrate now - monitoring his humira levels. Maybe try going off rifaximin later... [ more ]
See all 16 replies...
J-Pouch ForumsGeneral Discussion
Need a good doc in Albuquerque
FM Former Member
Karen4444 Hello. I am in Albuquerque and need j pouch surgery. I know u wrote this post a long time ago....but I would really love to ask you some questions regarding Dr. Brown. If you respond to this post I will send u my personal email. Hope I hear from you! [ more ]
Feeln'good Hi welcome to Albuquerque. My surgeon is Dr William Brown at the NM Colon and Rectal Surgery associates. He's great!!!! [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Jpouch 1 1/2 yeras Butt Burn
BA Bill A
Former Member Applying ilex as a preventivd measure, to treat mild butt burn or an itching burning sensation is a bit of knack, knowing just the right amount to apply without it becoming a sticky and uncomfortable mess. Applying in such circumstances, cleanse as normal, either with toilet paper or non scented, natural n pure baby wet wipes, probably best use wet wipes until familiar with the process; plus the residue from the wet wipe, when on the skin, kind of helps the applied ilex paste spread more... [ more ]
Bill A I have tried again and it does seem to work best. Do not want to get too excited since I have been so disappointed before. You have explained much of what confused me. I would ask the following. What if any medication cream is aqpproiate to heal the sores. I assume it is not required. The most important is the cleaning. You do it once a day and when. I bought baby oil is it best. Where do you buy the ilex. What is quanity. Do you rub baby oil til it seems like no sticky suff or are you very... [ more ]
Former Member I suggest you try the ilex paste again, I'm surprised it caused pain when applied. but If you know for certain it did, then stay away from it. From my own experience I endured nearly a week of excruciating pain and discomfort due to the output of my loop ileostomy leaking onto the skin around my Stoma; it was the worse experience of my life, I even questioned as to whether I made the wrong decision to opt for a J pouch. The skin around my Stoma was red raw, broken, blistering and oozing; it... [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
How do you know if its stomach ache or pouch pain ?
PouchomarxPouchomarx
Angie Wilson thanks Jan [ more ]
Jan Dollar I thought I responded to this, but I guess I got distracted before hitting the "post" button. Basically, as stated above, location is your best clue. The stomach is above the navel, the gallbladder under the ribs on the right, the j-pouch is low in the pelvis against the sacral spine. Pain originating in these areas will often have a localized effect. Sometimes, though, it is more vague. If the pain is more widespread, it is more likely to be a generalized gastroenteritis, like you get from... [ more ]
Angie Wilson Yes to you two who've endured obstruction - have been there too - twice - and so glad to have survived it. Poucho - I think knowing if it's pouch pain or stomach pain is probably something you sort of figure out over time as Sharon mentioned above. I can tell the difference for the most part - three types: stomach, small bowel pain, and pouch pain. And, I've learned to try to describe the daily amount of pain as "discomfort" - did that in my head to survive all these years and it worked! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
stool colors
AW Angie Wilson
Angie Wilson thnx Jan - you're the best [ more ]
Jan Dollar Grape juice is good for the pouch if you are looking for a laxative effect (similar to prune juice). So, it all depends on what effect you want. Either way, it is safe. Jan [ more ]
Angie Wilson Isn't that something - I've only visited Paris twice and I'm thinking...this lady is living in Paris!! But, living anywhere is totally different than visiting. You are fantastic. I did my walking today with a friend and it sure helps - I can get out now as it is not hot. I usually have a good attitude about where I live - as in - "what can ya do" - how I ended up in Texas is a long story - but here I am and here I will be for foreseeable future. I think as I age....I feel like time is... [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Colon Removal
J Jenn
Jenn I know what you mean about taking your pain meds. A lot of people think that if you take them your gonna get addicted. My MIL didn't want to take them because of that reason. I explained to her that if your in pain your not gonna get better because you don't want to do anything. If you get your pain out of the way, it's easier to focus on getting better. My husband explained that to her as well since he has seen me go through all this. Thank you for responding with such care!! [ more ]
Angie Wilson I am so thankful you are there for her. This is priceless, it is so hard on both patient and caregiver, and in the end - it's perhaps one of the most important things we do in life. Your MIL is fortunate to have you and I hope the ups and downs of the next bit of time go by fast. I also try to remember that sometimes it is worse to watch than it is to experience it - but I was always one to take pain meds and sort of get through first weeks after in a dilaudid (sp) haze - I am so thankful... [ more ]
Jenn Thank you so much Angie Wilson. After I spent the night in the hospital with her (we all know how boring that can be), she told me that she wouldn't have gotten through the night without me. Thanks to all of you!! [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Cipro Migraine
LambiepieLambiepie
TE Marie Barry White would definitely work better than xanex! Please let us know what you find out. It's not like you want them to find something wrong but you want to find out answers. [ more ]
Lambiepie Thanks, TEMarie, I'm hoping for no Crohn's, too, but I would like to know the cause of the slow drop in iron. I have my prescription filled for two Valium. I'll do what you did - one an hour before and one right before. I'm hoping they have headphones. I had an MRI about ten years ago and my tech sounded like Barry White. His voice was like honey! [ more ]
TE Marie I'm hoping for no crohn's. The MRI might help to diagnose what's going on besides that as well. I had headphones for an MRI on my head and it was fine. I took a Xanex an hour ahead of time and one right before it. I brought my own. Just a suggestion. Good Luck! [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
9 months post-takedown. Not going well
D DanielR
TE Marie Palm55152, Feeling better is the goal and I'm glad you are doing better I have never been told not to take antidepressants with any antibiotic and have been on many of them at the same time over the last 20 years. I've also needed to take prescription medications for years. I've had doctors of many specialties and have all of my medications at the same pharmacy during that time. I periodically go to on-line sites and enter all of the medications and supplements I take to see what the... [ more ]
palm55152 well I was told by doctors as well as pharmacists not to take any antidepressants when on cipro/flagyl.I have to go back to the dr. have not done so yet as I am happy with my pain meds.. [ more ]
Angie Wilson I agree - I've tried several anti depressants over the years and had a problem with only one - Wellbutrin - and that had nothing to do with pouch. Take Zoloft now and I think it helps - along with exercise, etc. - and also - lowering my expectations via cognitive behavioral/ meditation type thinking. I've thrown everything in the book at it over the years and if one thing stops ....I try something else. Sometimes changes are needed in meds or coping skills - the old ones grow stale, etc. -... [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
Cruising to Caribbean
Y ytcrockpot
ytcrockpot Thanks Cruising is such a great way to travel and see different ports. Your pouch is never to old to travel, mine is 34 going on 35 years this June. I would love to do a Europen one, but don't want to travel overseas myself. As soon as I find a roommate, I'm going! [ more ]
Angie Wilson Fantastic!!! So glad you had a great time - I took one 14 day European cruise years ago with no problems at all. I have sort of avoided them as my pouch has aged, but maybe I need to try one again -hearing all of you speak so positively is so encouraging to me. Just so happy for you. [ more ]
deweyj Wonderful! now I am less anxious about contemplating a cruise. glad you enjoyed it without issue. [ more ]
See all 32 replies...
J-Pouch ForumsOstomy & Skin
SIBO and ostomy
AllyKatAllyKat
JLH my tea for settling tummy aches contains spearmint, ginger, peppermint and some other nice flavors. not that tea can combat sibo, but it is somewhat of a confirmation that mints and ginger are tummy friendly. my understanding was that one's sibo shouldn't be an issue if there is no longer a reservoir--that being either a j or k pouch. apparently one can also get sibo with a colon. from my experience--for what it's worth, as i am but one person and everybody is different--i never had sibo w a... [ more ]
LisaTX USA I use peppermint oil capsules to control the gas due to SIBO. I take about 8-12 through out the day. They work great. They don't eliminate the gas completely, but it certainly makes a huge difference. They are much cheaper on Amazon. [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
all new problem...maybe
skn69skn69
JLH just got your report on another post so no need to repeat. [ more ]
JLH did you get to the doctor's office ok and what did the tests indicate? i've been worried about you! hope all ok and good results and you can return to k-pouch normal food. best, janet [ more ]
JudithS Two days ago I had something stuck in one of the holes in the tube, 1/2 out and 1/2 in. Couldn't figure out what it was at the time because it wasn't pliable like food, so just kept moving the tube back and forth (didn't think of adding water-good idea). Finally after what seemed like a millennium, probably five minutes, a lemon seed came out. I try to be so careful when adding lemons as I use them all the time, but one little one got away!!!!!!! Guess I'm going to use cheesecloth when... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Acid reflux anyone?
M Momma
ElmerFudd I didn't really have reflux, but did find that PPI's like Prilosec changed my quality of life with a j-pouch significantly for the better. While there are long-term issues with PPI's, I have not experienced them yet. Perhaps only being on once a day has helped. I did go off PPI's for a month or two because of anemia - that was probably caused by NSAID's rather than Prilosec (since I haven't had issues since getting that resolved). So, if his doctor is okay with it, I would suggest taking an... [ more ]
Maverick Plus I have acid reflux, and my ENT doc (who saw my inflamed throat and intermittent coughing) put me on dexilant. It seems like a strong drug with many side effects. It is relatively new. Is anyone here familiar with it? [ more ]
Scott F Zantac and Ranitidine are the same drug. Both doses (75 & 150) are OTC. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Blood - Brand New Pouch
M MannyG
Angie Wilson I agree with the two above - had some blood for sure post take down - monitor it and stay hydrated. If you are really worried, call surgeon and just have him/her check it out. It seemed like I had to go in once a week or something post op anyway - but that was a long time ago. I know you want to avoid going to dr. - but don't wait if you continue to worry more than a couple more days...it will just drive you nuts and taking action will give you answers - and likely - peace of mind that it is... [ more ]
Emmyschmemmy I saw blood following my takedown for about three or four weeks straight. I was concerned enough about it to go see my surgeon who did a flex sig and said it was all normal! He saw a slight inflammation at the connection sight (the "cuff"), which was to be expected since everything was so new. I'll echo Sharon -- monitor your symptoms and if you feel worried about something, give your surgeon a call! [ more ]
skn69 Blood is a kind of funny thing, a small quantity can colour the bowl...and be very, very impressive...not saying that you are not bleeding (and you are right to post and ask) but just that you need to monitor it closely...how much is a lot? Does it drip on its own or is it just mixed in with the stool? (I know, gross quesitons but important)....yes, you may bleed post take down but it should taper off slowly and not normally get worse. Add to that the pizza that may be somewhat acidic and... [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
pouchitis and fistula please I need help
H Hosaamtak
Eitan Hi I am from Israel. Did you try to see Dr Iris Dotan from Ichilov hospital? She is expert for pouchitis. Did you suffer fro UC or Chron's ? Eitan [ more ]
Laurie Bradley Also, change your diet - try going to a glutein free or a high protein, low fat , low carb diet. It worked for me! [ more ]
Laurie Bradley Hi, my alternative drug is moxifloxican 400 ml. - this replaced the cipro. My body became immune to cipro. I had many difficulties but am much better today. Hot baths help the fistula to heal - don't ask me why - don't know the particulars but it works. I have not had a fistula (knock on wood) in 4 years or so. The Remicaide is of tremendous help to my body. I used to take 80 plus supplements a day, my antibiotic and canasa. Now I take my antibiotic, canasa and a supplement for my eyes (the... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Canasa and JPouch
O OKSTFAN
n/a I've been using canasa fairly regularly (from daily to 3 or 4 times/week) for cuffitis, for about 5 years now. While most of the time I am symptom-free, my last EUA/scope showed erythema and ulcers in cuff, and ulcers in pouch. This is typical for me. My pouchitis still recurs 2-3 times/year. My biopsies have shown the Crohn's markers (granulomas, etc.), so there is that complication. I like to think the Canasa is helping at least to keep some of the cuffitis symptoms at bay, and maybe... [ more ]
Jim S I had my j-pouch done in 1987 and have only had a few brief episodes of pouchitis. The latest scope a week ago showed inflammation and ulcers which surprised me because I did not have the typical symptoms. So, Doc started me on Canasa. I find it interesting that I was on the clinical trials for Asacol in the early 80s and it really didn't help the UC. Hoping for good results this time around. [ more ]
Jan Dollar Rowasa used to come in suppository form in addition to retention enemas, but they stopped making it about a decade ago. The Canasa brand is the only mesalamine suppository currently in the U.S., and there is no generic. It also is twice the concentration than the Rowasa's were; 1000mg vs 500mg. Salofalk is an available brand in other countries. Whether or not people use the brands interchangeably, I don't know. Sometimes it does not matter, but in this case, Canasa is suppository only. Jan [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Fissure?
T TomU
Jan Dollar Scoping is great for revealing inflammation, growths, strictures, stiff walls, overstretched pouch and those sorts of things. However, it cannot show what your pouch does when you are trying to empty it. Anesthesia would only relax things even more, so it is a passive exam, not a dynamic one. Defecography is done in "real time," where you are given an enema of thickened contrast. Then flouroscopic imaging shows what your gut does while you try to empty the pouch. It can be embarrassing, but... [ more ]
TomU Hi Jan, thanks for you response. I've already had a scope of the pouch done under general anaesthetic, would this be able to reveal any structural defects or are other tests required to assess the structure? Nothing like this was reported to me afterwards by my surgeon. [ more ]
Jan Dollar If it was a fissure, I would think you would have extreme pain with every bowel movement. Plus, Botox should have helped in some way. What you describe could also be a structural defect (like an internal prolapse or twisting of the pouch) or muscular dysfunction (such as pelvic floor dysfunction). MRI may or may not sort this out. Defagraphy may be the next step, which shows the actual emptying process. Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Hemorrhoid trouble!
linalina
Emmyschmemmy When I get hemorrhoids, I find the only thing that truly helps make them go away is to time my bathroom trips. If I set a timer for 3 minutes and finish my business in that time, the hemorrhoids subside much quicker than when I don't time my bathroom trips. It's so easy to sit there and play on my phone or read a book until I feel like my pouch is empty, but this is a big no-no! [ more ]
Angie Wilson Had one outside once - it did go away - got help from doc - did not cause any continence problems beyond the usual issues we all deal with. It hurt a lot and more than that, it scared me...but it turned out fine. I hope you call your doc and get some help and as Jan says "this too will pass" [ more ]
Jan Dollar You can use hemorrhoid cream to help with the pain. Call your doc. A hemorrhoid should not affect your continence, as it is not in the sphincter. Jan [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Nausea after J-pouch surgery
T Trisha
Trisha Thanks so much, I have seen my gastroenterologist and she says it is not unusual to have nausea after this type of surgery. We are pretreating in the evenings with compazine. She also put me on a probiotic. This seems to be working. She said they don't know why the nausea starts or why it ends but she does expect it to end on its own. [ more ]
Scott F Nausea is sometimes a sign of gastritis. Perhaps a few weeks of Zantac or Prilosec might be worth a try (I prefer Zantac). [ more ]
boy's mom Could you be lactose intolerant? We only learned my son was lactose intolerant after he got his J pouch. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Any of you on Humira for Pouchitis?
ValerieKValerieK
Jenniferann I was on Humira for psoriatic arthritis. While I was on it my pouchitis completely disappeared. Unfortunately my arthritis did not respond as well so the doctors took me off of it. [ more ]
deweyj fwiw, about ten years ago, the frequency of pouchitis increased to every 3 months for me vs about every 18 months, so my new doc (had just relocated to SF) amended my dx to crohns and wanted me to start Remicade. I punted because ten years ago I didn't have as much familiarity with biologics (nor did the world) as we do now. that year arguably was a bad call, I have since developed strictures - one mid pouch and another above the pouch which arguably might have not happened had I just... [ more ]
JMarie Diagnosed with pouchitis in 2006 and have made my way through the usual tx of Flagyl, Cipro, Endocort, Hydrocort...now on Augmentin (love it until it starts to make me feel nauseous). Last year I started Remicaid and then after 9 months of feeling great had a reaction (severe abdominal pain during infusion and blood test showed antibodies.) Am now ready to try Humira however, my insurance is denying the Humira for the dx of pouchitis. They did this for the Remicaid but once my provider... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
High Grade Dysplasia J pouch.
VR Very Rare
Angie Wilson So glad you are at CC - they are the best. I am hoping for a positive outcome -as in a least invasive, easiest to deal with outcome for you...and if that cannot happen, I am hoping for the alternative options now available for you. So sorry you are going through all this - your attitude is so positive and that is a lot of the battle, as you know. Take care and know people out here care. [ more ]
Very Rare Angie and Jan. Thank you for your responses. The Drs. at CC are great. I had an earlier reading of HGD and was sent to CC where they have monitored me very closely(6 month pouch and endoscopy). Now that HGD has reared its ugly head again 2 1/2 years later they are very concerned. I have not asked about the alternative procedures(K pouch and BCIR) but will now enquire. I have regained my freedom over the last 5 years and if it comes to permanent ileo I'll have to deal with it. Thanks again... [ more ]
Angie Wilson I'm sure there HGD is different with UC and FAP - just wanting to give you hope and wanting you not to jump at whatever the first doctor tells you. I truly hope the solution is easy rather than difficult and that if you do have to get an ileostomy, you can get one of the newer, improved models with no outside bag. But - I hope you get lucky and don't have to do any of that! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
31 year old pouch re-diagnosed with Crohn's and have Humira questions
W weezyw
deweyj new thread to me, so maybe I can offer some insight. my dx morphed to crohns about ten years ago, tried Remicade successfully for about a year and a half and then Humira, inject weekly, added small methotrexate (similar to Azathioprine described by someone else above) 4 years ago and have been better albeit not perfect since. It should help, will you be able to eat anything? I don't know, I don't each much fruit nor vegetables as they run right through me, but as opposed to others I can... [ more ]
Jan Dollar JSUFFERER, Just so you know, this thread is over two years old. If you are interested on how it went, you may want to send a private message to weezyw, as there has been no posting by this member since then. I am not even sure she is following this thread. Jan [ more ]
Jsufferer I have the same weezyw. I suffered with misdiagnoses since I was a teenager then they said I had UC then medication stopped working and to fix it was to have a Jpouch. Had it in 2010 now I have been diagnosed with crohns. Frequent toilet, cannot eat so many foods I once did as they don't break down and also make me feel like I have razor blades coming through and eaten chilli. Used to live on gastro stop then stopped that and tommorow a nurse visits to start me on humira and how to use it. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnant for the 2nd time and no fertility treatments!
armywifearmywife
Living Hello everyone I'm Chloe Purcell I'm 31yrs old....I am currently 12 weeks with a natural conceived baby!! I have let had my pouch very long I am well out of my last three step surgery only two years. I have nothing to compare being pregnant to but I do think there is tugging and pulling going on in my scar areas. Other then that I hope my pregnancy is uneventful and I am planning on having a c section. Hope baby plays nice inside and doesn't knock on my scars much.....the having a c section... [ more ]
armywife Wow 52%? I didn't know it was that high. Miracle babies, indeed! [ more ]
reneehow1 ❤️
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
ABDOMINALS
bederyparisbederyparis
skn69 Could be...then again it could have nothing to do with it whatsoever. Generally when you start exercising, especially if you are concentrating on a specific region, you stimulate it. You could be suffering just some temporary side-effects of an over stimulation of the zone. It is somewhat rare to really hurt yourself 5.5 months post op just be doing abs (but not unheard of). Watch it, monitor it and see if things improve. Keep off the exercise for a few days...if things do not improve again... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Helping others understand
KelseyHey2308KelseyHey2308
Angie Wilson Kelsey - so sorry for how you feel. It is an awful feeling to think others are judging you when you post on this site - whether the other writer intended to or not - this is what you felt. I am a counselor- so step one for me is always really hearing what people are saying and validating "i hear you." I need that in my life and I have a few people who get that and as some have said, others I just had to let go of. I do have to cancel things at the last minute at times and I feel guilty and... [ more ]
Lambiepie Kelsey, please try not to take offense. Everyone here is sharing his own experience to try to help others and we're only going by our interpretations of posts. We don't always agree (I posted a similar plea as yours about two years ago and advice was direct and no nonsense, but it got me out of my own head and I learned a lot, hence, my ability to share here with you what I learned.) Some of us are sarcastic, some no nonsense, some funny, some caregiving, but ALL are well meaning with the... [ more ]
JenJen I was having a rough morning and read this string and all the responses. Thank you Jan, Sharon, Bill, Richard, Dewey, Scott, Lambie. Whenever I hit the site, like today, looking for some guidance or empathy, I always read you giving of your time and effort to help others with all of "this." I don't often post, but I have been helped by you, by proxy, and I just want you to know how much I appreciate you sharing! [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
gluten free diet
M maddie18
Jan Dollar I think that should be fine. You just need to be eating gluten for a few weeks before the test. Hopefully, one day of gluten fasting should not matter. Antibodies should not clear that fast. Even if you are negative for celac, you can still be gluten intolerant, where you get the bloating and indigestion. That alone can add to your misery if you have narrowed areas from adhesions, just like lactose intolerance. But, it is still good to rule celiac out or in. Jan [ more ]
maddie18 My surgeon ordered the test the day I dropped gluten from my diet and I went and had blood drawn the same day. I have had so many abdominal surgeries that I would stick to a low residue diet just to avoid more surgery. Thanks ladies, I do appreciate your help and advice :-) [ more ]
Jan Dollar The only way I see a gluten free diet as possibly being helpful to prevent obstructions is if you have celiac disease. In that case, gluten actually damages the lining of the intestine and this can cause ulcers, strictures and obstructions. If you think this might be a problem, you should get the antibody blood test before going gluten free. If you are not eating gluten the test may show a false negative. Jan [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Worried about c-section and j-pouch!
G gen1
JillM I had a perm ileo after j-pouch failure by the time I had my babies. I had a high risk OB but no surgeon was present during my c-sections. My c/r surgeon said that c-sections are very dirty operations and that unless something drastic needed to be done, he wouldn't take any action during a c-section anyway. Two uneventful c-sections - OB told me I could have 4 more - I told him to send his kids to college on some other woman's uterus that two was plenty! [ more ]
gen1 Thanks for all the tips hopefully my scars don't hurt much either since it's been 3 years since my surgeries! Not too long but some time lol [ more ]
LHetti My scars didn't hurt while pregnant, but it was 8 years after my colectomy. My scars actually looked better after the csection. No stretch marks either. I used cocoa butter on my belly to help with the itching as the skin stretched [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Partial obstruction for multiple days
U UCfree2012
JIMMY B Hello I've had my pouch for 15 years and as the season come and go it's always different I seam to forget to drink water in the winter because I don't seam thirsty just like the summer I have to drink twice as much I also find stretching my body everyday helps to so LOTS OF FLUIDS ever day [ more ]
tulsamom Glad you are feeling better. I've had two in the last two weeks and I don' think food had anything to do with it. I think it's the adhesions and a kink. I've been doing yoga for 3 weeks. Lots of twists and compressions. Any thoughts on that anyone? [ more ]
therealstinger I have found out that Roughage always gets me locked up, So I never eat raw veggies, NO Cheese , very little bread. And most of all never woof down that food. What I found out is if I eat high fiber > beans it will start the blockage , a few days later im locked up and have to look back at what I eat days before. Sure enough it all started with a particular food days before. So here goes that half to full bottle of Citric magnesium , heat pad, coffee and pain for a few hours. I have had... [ more ]
See all 14 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

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

Membership Required

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