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J-Pouch ForumsGeneral Discussion
intestinal surgery or foot surgery...which is more painful?
ksrksr
Murray Intestinal hands down. Barfing after my Achilles surgery didn't cause me any pain or pulled staples. [ more ]
jeffp Sorry for the late reply everyone. I thought I would get notified if there was a new post, but I guess I didn't turn that on. I just started walking on my heel with a boot last week, which was exactly 2 weeks out. I had quit taking pain meds a few days before that, but took some more after I started hobbling because it hurt and I don't like to be in pain! (I can't really take much ibuprofen.) My surgery involved cutting the bone as well (1st metatarsal I think), and the bone was screwed. Ha... [ more ]
ksr I had my toe surgery on 6/24. The first few days was hard but the pain was nothing compared to the j-pouch surgery or having a massive obstruction. The past two days, I have only needed to take tylenol for pain. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
vaginal delivery
roxzroxz
roxz thanks Jan! I was hoping others on here may have delivered vaginally would love to know how their pouch handled it! [ more ]
Jan Dollar I would consider it as a trial labor, rather than a planned vaginal delivery. Overall, 1 out of 4 will still wind up with a c-section after a VBAC trial labor. The fact that you have had not had a prior vaginal delivery adds another layer of the unknown. Still, my thinking is that waiting for labor to begin on its own, ensures readiness for the baby to be born, regardless of the ultimate delivery method. Jan [ more ]
clz81 I did have a vaginal delivery, but it was my second pregnancy. We all felt comfortable with that decision based on my first delivery (pre-pouch) being so easy and the fact that I have small babies. I was very happy to be able to avoid surgery, however, I may have chosen the C-section if I hadn't already had a vaginal birth with an idea of what to expect. Tough decision! [ more ]
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J-Pouch ForumsPouchitis
Am I on the path to chronic pouchitis?
B bostwis1
Jan Dollar I'd be more worried about you than the elderly patients! Nursing homes (and hospitals) are especially notorious for incubating virulent strains of antibiotic resistant C. diff. Jan [ more ]
bostwis1 I don't start my new job until end of July. I am currently working contingent in a nursing home. Probably not a good idea to work with the elderly. I think I'll avoid picking up hours until I'm done with the antibiotic in two weeks. Hopefully the Vanco does it's job, because plan B is fecal transplant. I know people have done fecal transplant, but it honestly creeps me out. I feel anxious being off the Cipro. I keep expecting the cramps and urgency to come back. [ more ]
Pluot Just wash your hands thoroughly after using the restroom (as everyone should). Most people are not susceptible to C. diff and many people are even colonized with C. diff without symptoms because their healthy guts keep it in check. I know you work in healthcare so I would check with a boss or administrator to see if there's a policy about you going to work when you've tested positive for C. diff. I can imagine that since patients who are C. diff positive are usually placed on contact... [ more ]
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J-Pouch ForumsGeneral Discussion
What should I have at the hospital for step 1 recovery?
TheRealBrettTravisTheRealBrettTravis
PoucherInTO A big water bottle or something similar with a lid - I kept hitting my cup with my hand and spilling it all over my bedside table. If you are bringing in a container from home, find out how much liquid it holds so that you can keep track of how much you drink. Ear plugs, a sleep mask for your eyes and your own pillow or pillow case if you can [ more ]
dgtracy A Fan, [ more ]
TheRealBrettTravis Feel free to email me at btravis311 AT mac DOT com and ask anything you like. I'll try to answer to the best of my ability! [ more ]
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J-Pouch ForumsGeneral Discussion
Toilet Bowl Recommendations?
J Jpouch8888
AllyKat Toto dual flush, comfort height, love my toilet! [ more ]
Jan Dollar For me, the unexpected bonus was how quiet it was. Our old toilets were noisy to flush and loud while refilling. They do not have a standard flush or fill valves. The flush valve is twice the diameter that standard toilets have. It does not have a power "turbo" boost or anything like that. Just a gravity flush. Jan [ more ]
CTBarrister That sounds pretty good Jan. I have to think about replacing my two toilets. They usually require two flushes to send everything down, and it is irritating. They are 12 years old and work, but I don't really know what the shelf life is on these things. They were installed by the builder, who essentially used the cheapest materials he could find from what I have learned through the years. I have had to slowly replace all the cheap original materials with better materials though the years. [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Recovery following c-section
M MrsC85
Daisy18 I had both an epidural and spinal because the obgyn wanted to make sure I was good and numb in case the section took a little longer than normal because of my pouch (It didn't, I think she was just being cautious). Just like Breezie, my GI system was shut down until the next morning and I too was able to walk around the same day of the c-section. You will be ok :-) [ more ]
Breezie I had both a spinal block and an epidural at the same time for my c-section, due to also having ankylosing spondylitis. The result was that they shut down my GI system for at least a day, probably the only day in all of the years that I had my j-pouch that I didn't poop at all, ha ha! The effects will wear off pretty quickly and you'll be up and around before you know it. My son was six weeks early and I was able to walk into the NICU to meet him a couple hours after the c-section. C-Section... [ more ]
LHetti Hi! I had a spinal with my first c-section and then an epidural with my second. I'm sure I had an accident in the recovery room, however, it was no big deal as I couldn't feel anything the nurse just fixed any issues. I refuse to use a bed pan, so I was up and using the bathroom later that day. You'll do great! Congratulations a little early! Best wishes for a very smooth delivery. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Nighttime leakage w/ out pouchitis?
J jeane
boy's mom Doctors not offering any suggestions on this really. A bio feedback PT said "liquid equals loose" but with a restricted diet and all of the acacia capsules-- his leaks are not liquid. His cal protectin level shows no inflammation. Also, for the last few weeks the leaks seem almost nightly. So have no explanation. He is a deep sleeper, so guess that could contribute. Very frustrating. Would love some suggestions. [ more ]
boy's mom My son is on chronic antibiotics and it still happens at least 50% of nights. [ more ]
Lambiepie I never leaked at night for the first 2 1/2 years after takedown. I have leaked for the past year. My sphincters are in good shape so I think it happens when I pass gas in my sleep. I will say that this has happened since I've been off antibiotics. [ more ]
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J-Pouch ForumsGeneral Discussion
Driving aggravates pouch?
LambiepieLambiepie
CeeeeCeeee This always happened to me prior to my J-pouch surgeries.....especially when I approached one particular intersection with an especially long light. Since having my surgeries.....over 10 years ago, I no longer have a problem in my car. [ more ]
techwrench For a couple of years after the pouch surgery,I drove trucks for a living and never had a problem. I currently have bad pouchitis,and when a gas bubble gets in the pouch,it causes very painful spasms when seated.Reclining the seat slightly helps a little.The only way to remedy the problem is to find a restroom.Sitting in stopped traffic for an unplanned event is my worst fear ! [ more ]
Mysticobra Mine does too but I think it's the anticipation or un felt stress of leaving the house and toilet. Another thing that upsets mine is mowing the lawn on a riding mower. All the bouncing around makes mine hurt to no end...well for the rest of the day anyways. I drive a lift truck at work and that aggravate it too. No shocks on those things so I have to be careful now. It does get painful after bouncing around. [ more ]
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J-Pouch ForumsOstomy & Skin
permanent ileo advice
LambiepieLambiepie
Lambiepie This is all very comforting to hear. Liz, thank you for saying that this should be presented as a viable option, not a last resort. I've always gotten that impression from my surgeon. I also wish he had finished our initial conversation four years ago with, "BTW, think hard after surgery number one. If you're satisfied, it's a whole lot easier to maintain that end ileo than to remove a j-pouch once it's created." No, he waited until I came back to discuss removing my difficult pouch to tell... [ more ]
Lynne2 I totally agree with Liz. She was one of my inspirations for doing the surgery! [ more ]
liz11 feel free to pm me too. i did it 27months ago. And despite complications out the whazoo for over a year afterward... it was by far the best decision I have ever made regarding my medical care. It is sad that this is presented as a last ditch effort to patients when it really should be presented as a way to have a great quality of life.. and not waste your life away.. trying to play the jpouch game. really.. pm me if you would like. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Face tingling
nysnys
wsh6745 Thanks Jan! I always look forward to your responses. [ more ]
Jan Dollar If the only medications you are taking are Norco and Tramadol, then it is not likely a drug photosensitivity. Based on your description, I'd suspect it was a reaction to the sunscreen. Even if you have used the sunscreen before, you could develop sensitivity to it. The sun exposure heightens the reaction. Jan [ more ]
wsh6745 I was out in the sun on Sat and Sun this weekend. It was beautiful out so I wore quite a bit of sunscreen. Last night at bedtime, my cheeks and jawlines were tingling and itching. I just thought it was too much sun so I took a shower and went to bed. This morning, not only are they all still tingling and itching but both eyes are very very puffy and swollen. It honestly looks I was punched in The eye, which of course, I wasn't. The combination of all of it is news to me. Could it just be too... [ more ]
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J-Pouch ForumsOstomy & Skin
A mobile app from a fellow Ostomate!
U ucfree
oonja ❤️
Lynne2 Wishing you all the best! Keep us posted! [ more ]
Holly HM Glad to hear you are doing well. I hope that in a year's time I can be saying the same thing. I know the surgery is difficult and long, but I am in much better shape for a long surgery than I was with the original j-pouch. I was at death's door and on high doses of cortisone. The cortisone kept me from healing properly and I ended up with a severe infection. Hopefully this recovery time will be better. thanks [ more ]
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J-Pouch ForumsHelp! Need advice now!
High liquid Output
Shane199Shane199
Txgal58 Hi Shane 199! To be honest, even before I had the takedown I felt so much better, I guess I didn't realize how sick I actually had been. My UC came on very gradually, I was never on steroids, never hospitalized, but obviously it was dragging me down. I had complications after my takedown, within a few weeks, due to adhesions. Unfortunately I had to be opened up again to take care of those. It's hard having three surgeries in six months; I went from 198 the day of my first surgery to 120. Was... [ more ]
Rebe0505 recommended for dehydration..pedialik drink..found in supermarket in children's section..it replenishes the salt one looses with lots of bms or liquid bms..this is better than gaorade as it has far less sugar..recommended by dr. shen..ps tastes pretty good too.. [ more ]
lovedby2 Hi I'm 2 weeks post op loop iliostomy. This is my second loop iliostomy and just like before, lots of liquid output. I lost so much weight with my first round of surgeries in 2012 and I've lost another 10 pounds so far since being released. With my first surgeon in 2012 he also was not in a rush but I eventually said it's time, I was losing too much weight and was in the hospital for dehydration, severe, often. I'm with a different surgeon this go around and feel good with him and let me... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchoscopy results: do I have Chron's?
DL Doodle Lover
Txgal58 Hi Doodle Lover! I was very interested to see your post. I just had an upper endoscopy and flexible sigmoidoscopy done today. The upper endo showed some minor irritation in my esophagus from acid reflux, nothing more. The flexible sig however showed ulceration and inflammation in almost exactly the same areas you reported! I've had pouchitis before and am not experiencing any symptoms as I had with it. The reason for the tests today was to see if we could figure out why I keep having chronic... [ more ]
Doodle Lover Thank you, Jan, as always for your wise and quick response. i will snuggle up with my baby and stay positive! thanks again! [ more ]
Jan Dollar It could be Crohn's, but just based on those findings, I don't think the diagnosis could be made. Just because there is some inflammation and ulcers outside of the pouch, it still does not mean Crohn's, especially since it has not been that long since the c-section. I even had some serious cobblestoning in my pouch at one time, and there was no Crohn's talk. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Something's Wrong...
GX Geoff Xmas
Geoff Xmas Thanks, I only seem to get the thrush when I'm on Flagyl, but next time I'm on it I will look into the thrush rinse. I do take probiotics, albeit not as regularly as I probably should, so I can improve on that. I really appreciate the responses! [ more ]
Jan Dollar If you have oral thrush (yeast infection), you need antifungal treatment. They usually prescribe a liquid suspension that you "swish and swallow." Jan [ more ]
skn69 The only thing that I know of is to both cut out sugars and carbs and to add probiotics... I am sure that there must be other ways but those are the easiest ways that I know of. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Being Tired And Weak All The Time.
MysticobraMysticobra
phonix2g If you are not eating right you will be exhausted. If you are going to the bathroom that much and not putting the right amount of fluid or nutrition back in your body then you will be exhausted. If you aren't getting the right amount of sleep then you will be exhausted. If you've lost a lot of weight then you will be exhausted. If you are experiencing opiate withdrawals then you will be exhausted. Yes you can start to experience opiate withdrawals while you are still taking them I know from... [ more ]
skn69 Scott, With or without the pouch, the disease etc you are going to get older (I hope!) and have to deal with a whole new set of health issues like, well...everything! It is natural to resist change but it is coming whether you like it or not so the best rule for me is to expect that there is no normal and be pleasantly surprised if you have a good day (food diaries actually do help but you have to add in the times that you eat the foods, what you ate, drank or did while eating them (like how... [ more ]
Mysticobra I know being older it takes longer to heal but another thing about being older is being set in your ways and being stubborn in changing your ways. So sometimes us older folks have to learn the hard way. [ more ]
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J-Pouch ForumsGeneral Discussion
Fearful
SavannahSavannah
Savannah Hi Sharon. Thanks for taking the time to respond. I am glad you are in the US surrounded by old family and friends with love, support, and hugs galore. I DO have lots of support from family(despite distance) and a large community of solid, reliable, sensitive, caring and loving friends. These relationships are a godsend and I always worry that they will tire of my health problems but they don't seem to. I try my best, especially when feeling well, to give back generously in all the ways I... [ more ]
skn69 Hi Savannah, I am sittin g here on the North American continent surrounded by friends and family (this is the annual pilgrimage home)and funny enough, a lot of my pain has dissipated...being distracted, feeling loved and needed, having those people who know you so well and can make you laugh...they all go a long way to comfort us and make some of that awful pain stop screaming so loudly in our bodies. Hubby is at 'home' in France and I am at 'home' where I belong...in the arms of those who... [ more ]
Savannah Oh yeah.......I forgot another good way of coping with everything. As a young widow and empty nester, I believe more and more in the comfort of my furry friends. I belong to the church of cats and dogs and it is so helpful!! Just thought I'd say ...... [ more ]
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J-Pouch ForumsPouchitis
Question for the "lucky" ones who had the pouch bleeding
I Ikh
Marianna I have chronic mild pouchitis and the only symptom I have is bleeding. I find it does not get worse over the years, but occasionally I have bouts of more bleeding. My doctors says I do not have Crohn's disease. [ more ]
AllyKat I Have had bleeding and I do not have CD or a cuff, it was stripped. Personally, I think u should be scoped and have no idea why your doctor would not preform one. F you look at my signature u will see I've been on every drug. I too was afraid of the endocort but had absolutely no reaction from it? It is not a long term drug so you would still need to find something else if needed? My GI treats. E. Rey aggressively when I have a flare up? When I had bleeding it took about a week to get it... [ more ]
jeane I do get pouch cramping at times even on entocort, but my ansl symptoms have inproved since going in it. I do not like being on it anymore than the next guy but I'm willing to do anything to save my pouch. I was afraid of permanent damage and scarring if I did not start this medication with chronic pouchitis for over two years. I never took biologucs with UC but would even be willing to try these to save my pouch and avoid additional surgeries. I wish I did that with UC as I may not have had... [ more ]
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J-Pouch ForumsGeneral Discussion
How to measure flange on two piece bag.
K KB82
KB82 Thanks, Wendy. I spoke with my stoma nurse and she said she'll take a look at the placement for me when I come in the day of the surgery. Hopefully she lowers it because it would definitely be hindering movement where it is now. I know it's only supposed to be for 8 weeks or so but you never know. Many stories of people having to go longer for a myriad of reasons! [ more ]
wsh6745 When they marked my original spot for the temp stoma is was really high too. I didn't like that because I wanted to make sure it didn't stick out of my jeans, shorts or high-wasted bikini. I actually brought clothes with to try on and test with the stoma nurse. We ended up lowering the stoma position quite a bit. It made it just a little more uncomfortable with making room for the bag because it would kind go hang down the beginning of my pant leg but it was only for 10 weeks so manageable. [ more ]
KB82 Aka knklhead, thanks for the info, that helps. I was curious if the hospital flange is much bigger than normal. I have a small torso, and the placement of the stoma they marked causes the flange to actually dig into my ribs when I bend over. This is why I'm trying to find out how they calculate their measurement. Thanks. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil
M Mark01
Scott F Some additional ideas: any particular antibiotic can stop working for you. I used Cipro very successfully for a few years, but it ran out of gas (no pun intended) not too long ago (nighttime leakage, etc.). At that time I was able to get things back on track with doxycycline. A probiotic like VSL #3 DS may also help (at least it helps me). Some folks see benefit with a low carbohydrate diet. Some people (like me) do better with Lomotil than loperamide. Good luck! [ more ]
Jan Dollar I would think that it would be an early symptom. Nocturnal leakage post op is pretty common. The sphincters normally relax some during sleep to allow for expelling gas. There can be temporary nerve trauma/damage that is subtle, and this is why it is only appparent during sleep. Weak sphincters could even be present before surgery, but not tested with chronic liquid stool. This is why some people are helped by bulking agents. Mark, since you are intolerant of psyllium, you may want to try... [ more ]
jeane Jan, Would permanent nerve damage show up early after the operation? I am more inclined to think the leakage is from pouchitis. In my case I had no issues like this until my last biopsy that showed true damage to my tissue versus superficial inflammation like I have had pretty much since the takedown three years ago. I keep wondering if I should be more concerned about this than I am as other than the leakage issue my pouch is behaving the best it has in three years the last few months. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland clinic
L L.DL
L.DL I know that they do take out of town people, the question is the price! As for it being a business I totally agree with you. [ more ]
techwrench Have you checked to see if C.C. accepts patients with out insurance ? When I used to go to Mayo,they would only take insured patients. My theory on why the ileostomy are pushed,is it's a business.The facility/provider can't perform the j pouch surgery, so they push ileostomy'to keep the business in house.At least that's how I viewed it. [ more ]
L.DL Thank you very much for your suggestions. I have been wanting so badly to go that route,because of so much that is happened here, with not much results and well to be honest besides the fact that our medical system here sucks! Sorry with all do respect, I changed from one hospital to another and they really don't seem to no more then the other. To be honest they don't really specialize in j pouches or at least with complicated cases! But are to dam proud to refer you to someone who is. With... [ more ]
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J-Pouch ForumsGeneral Discussion
Still having severe pains - uterus/pouch issues?
W wsh6745
Sweethoney I feel this. I already had a tipped uterus. also when its around that time of the month I have such bad cramps its breathtakingly horrible. [ more ]
Jan Dollar Adhesions would not be visible from the scope. They would be outside the pouch. I'd see the GYN and get a pelvic exam to see if your uterus is attached to your pouch, or in the wrong position. My uterus is retroverted, but does not prevent my pouch from filling, so I'd think something else would be going on. Jan [ more ]
wsh6745 I haven't talked to gyn yet. He didn't think it was tipped just that because of my anatomy and the size of the uterus that there just isn't room for the pouch to expand. Does this seem logical? I started thinking more about it and women have had full pregnancies without issues so how can "room" be the issue? If there's room for a baby, there should be room for my pouch to expand, shouldn't there? He didn't notice any adhesions with the scope. How would we know if there were any? I will see... [ more ]
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J-Pouch ForumsGeneral Discussion
To Jan
L LisaT
LisaT Thanks Jan. [ more ]
Jan Dollar I had to go back an review what I had said in my other posts. I did not say that the Remicade wasn't working, but that it may not be working for you. It all depends on what sort of arthritis you have. Ideally, the biologic you are on should take care of both your IBD and your arthritis. Of course, if your arthritis is not the inflammatory type (such as osteo), then biologics would not be the treatment. But, from what you describe, you definitely have something going on. Maybe it is from... [ more ]
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J-Pouch ForumsHelp! Need advice now!
really need a knowledgeable dr. here in l.a area
R Rebe0505
Rebe0505 dr. shen recommended dr. melmed...says he's a great dr. and he heads up dept on research there at cedars..have set up appointment..thanks for your suggestions but was looking for a g.i not surgeon..i think they see things differently.. and years ago when i was searching for help i actually went to see dr.fleshner(spelling)what i remember about him was he wore funny cloggy shoes..he liked being comfortable..he ran some tests to see if my issues were outside of the pouchitis issue or outside... [ more ]
Wife Dr. Fleshner is great. So are his partners. [ more ]
jls456 Dr. Firoozmand....for sure. [ more ]
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J-Pouch ForumsGeneral Discussion
Enemas a solution?
W Wife
Rebe0505 you are not kidding about the stinging..one night i thought i would try using it try to empty out it was a disaster..soon as i put it in it was stinging like crazy and before i was done i had to evacuate..messy situation.. [ more ]
techwrench I have used enemas for years to help wash out my j pouch. What works for me is to remove the little check valve flapper from the top, and dump the saline solution out.The saline water kinda stings. Refill with warm tap water. I reuse the bottle over and over, making sure it's clean each time. When the plastic cracks, and the bottle starts leaking, it's time for a new bottle. I even keep a bottle wrapped in a non transparent bag at work for treating sudden irritation, when it happens. That... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Reversal
P Pinky
Pinky its like a sharp pain rather than a cramping or gas pain i went to the doctor today and he said he doesnt think its blocked or anything but he just told me to continue the medication im on and come back if im vomiting. I think eating noting and just water would help me but im type one diabetic i have to be hooked up to an IV to fast my next appointment with the surgical team is at the end of next month. Im just concerned if these are symptoms of something gone wrong and if i wait until next... [ more ]
wsh6745 If you are worried that it may be a little bit of a blockage, start drinking white grape juice and clear liquids. Don't eat any solid foods and see if it helps. I had that same thing happen once and when I quit eating solid foods and switched to water and white grape juice, it got a lot better in about 12 hours. Then I was able to actually pass gas, have a BM (that seemed normal) and I felt much better. If you start throwing up then go back to the ER. I know someone where I live and he went... [ more ]
stellababy from what iv heard this is gas ?? [ more ]
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J-Pouch ForumsPouchitis
Why why why
AllyKatAllyKat
Jan Dollar Yes. Basically look up IBS and the treatments are the same. It is possible to have both IBS and IBD (my husband does). Jan [ more ]
AllyKat Thanks Jan but what Is IPS? Irritable pouch syndrome? [ more ]
Jan Dollar When you rule out everything else, I think you are left with IPS, which basically is incurable. You just "manage" it, the best you can. The other option is to consider "upsteam" issues, AKA Crohn's. Hopefully, it is not that, but I suppose that at this point, any answer is better than no answer. Jan [ more ]
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J-Pouch ForumsPouchitis
What is wrong with my pouch?
Alli AndersonAlli Anderson
AllyKat Same here. I just had a scope and the pouch only mildly inflamed is giving me a hell load of trouble. But I can't get a doctor to reverse this mess. I've been trying for 4 years. [ more ]
Alli Anderson Thank you! I will post on that board. [ more ]
Lambiepie Alli, are you talking about pouch removal and permanent ileo? If so, look under "Ostomy and Skin." There are several people who had this done and are sharing their experiences. I know what you're describing; I have all your symptoms, too. It's exhausting. [ more ]
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J-Pouch ForumsGeneral Discussion
new hospital, new experience
GinLynGinLyn
wsh6745 Good luck with your procedures. I hope all goes well and you no longer have any problems. Take care and post updates when you can, Wendy [ more ]
Lambiepie Good luck, GinLyn. I can tell you that the hospital where I had all three surgeries is considered the "Mecca" for these procedures and aftercare in NYC. The hospital itself was ugly, the views were depressing and the nursing care was, shall I say, "no nonsense." Yet I knew it was the right place for me to be and they'd be able to tackle anything that came up during my stay. [ more ]
TE Marie Best wishes for you surgery! It sounds refreshing that the hospital doesn't pour their profits all into redecorating the facilities! It bothers me when I walk into a new fancy facility or newly decorated office. I'm thinking, "this is why our medical costs are rising uncontrollably!" [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please Help
S stellababy
Ikh They put the tube in my stoma and did the things the above user said, not from my rear. it's not painful nor difficult, and it's important for the surgeon to know the pouch is perfect before takedown. don't be afraid of this. [ more ]
techwrench The procedure is called a gastrogaffen contrast x ray. It's pretty standard. They just insert a small tube in in your rear, and fill the pouch with contrast while having you roll around on the table for the x ray. The balloon dilation is to address strictures or narrowing's from scar tissue. If the dilation needs to be performed, it's so you won't develop a blockage later. It depends on how bad the stricture is. I had this done 1 time after the take down, and they had to put me under for... [ more ]
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J-Pouch ForumsGeneral Discussion
sure that I've asked this before but...Taste issues?
skn69skn69
skn69 That's the funny thing...my sense of smell is great (especially when my nose is not clogged! thank you antiystamines) I can smell the coffee and chocolate...just not taste them! (double frustration). No dots, spots, white gunk or discolouration, just a thick feeling like an invisible layer of over thick mucus (I know, yuck)...I am not on pain meds or antibiotics. Just the antihystamines & anti-inflamatories (does it seem as you get older, everything that you take is an anti-something-or... [ more ]
Jan Dollar I would tend to think it was the allergies, not the antihistamines at work. Taste is largely affected by smell. Jan [ more ]
suebear It could be completely unrelated to anything you have experienced health wise. My Mom lost her sense of taste. She didn't have any health problems. The only way to rule out your antihistamines is to stop taking them and see if your taste returns. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
L LisaT
Jan Dollar Yes, the podiatrist could help. Still I would be very hesitant to go forward with the next Remicade infusion with the positive ANA, even if it was not constant. You may find that the reduced Cipro dose is enough, but if your foot pain remains, I would not want to stay on it at all. Tendon rupture is definitely not something you want. Scott is right that plantar fasciitis is quite common, but with the meds you are already on, I think it is above the podiatrist's pay grade. That said, I saw a... [ more ]
Scott F Podiatrists treat plantar fasciitis all the time. It's hard to know if this is run-of-the-mill plantar fasciitis, but the condition is pretty common. [ more ]
LisaT Hi Jan, Thank you SO much for the information. My colorectal doc has decreased the Cipro in half. He was adamant that I see the rheumy a.s.a.p. The frustrating part of this is, in our area there is one rheumatology group and appointments are very difficult to get. I have an appt. on Sept 26th. My next infusion is in August. Do you think a podiatrist may be able to help with the plantar fascitis? Thanks! Lisa [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Tongue Issues
M mads101
skn69 Could it be bacterial overload or Thrush? I have a vague memory of my tongue looking 'cracked' or split in long lines going back from the tip to the base...it looked like dried mud after a rainstorm. It happened a couple of times when I was a teen and then never again...I also used to get 'cat tongue' kind of bumpy and dry...but that was due to antibiotics...A weird reaction. Not sure at all what it is that you have but I agree with Jan, you must tell your doctor. It could be a manifestation... [ more ]
Bebekspor I've been getting canker sores since second grade (I'm 33). Hate them. My GI would always ask about them too. I had one on the left side of my tongue that just cleared up, it lasted over a week. A couple days ago, got another on the right side, it hurts like hell to talk, drink, chew, even just to have my tongue sit in my mouth like normal hurts. The ironic thing for me is that during my 10 month uncontrollable flare preceding my surgery last year, canker sores were the only symptom I didn't... [ more ]
Jan Dollar This needs to be reported to your doctor. It could be UC related and might mean you have a flare of pouchitis, or it could be something unrelated to what is going on with your pouch. I highly doubt it has anything to do with the grape juice. If anything, the high sugar content would have more of an impact, not acid. It could be a case of thrush (yeast infection) which would require treatment. One thing for sure, this is not normal! Jan [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
new meds....if these dont work...its back to an ostomy!??
dgtracydgtracy
dgtracy No nsaids. Not for a few months now. My surgeon has been great at getting me to be seen and she's pretty compassionate when it comes to trying to get me on the right track she has called in another gi surgeon at the clinic when she did my last scope for her own second opinion so I feel like she is reaching out for answers as well. [ more ]
Jan Dollar Not really. It is basically a return of the UC in the retained cuff. No offense intended to your surgeon, but I would opt for a second opinion before considering another surgery with her. The current plan may be correct, but I would want more reassurances, since the first repair did not seem complete. I know "stuff happens," but this seemed like a missed opportunity. It is not as if she was unable to remove more cuff, because she planned to take the minimalist approach. Jan P.S. I did forget... [ more ]
dgtracy Jan, I dont know why she didnt remove more cuff during that first surgery. kinda wish she did. I'm just unsure of the way its all turning out. really want to be in a better spot and get back to life. is their anything natural that i can do to help with inflammation in cuff area? [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Obstruction?
CC colonless commodore
Txgal58 Sorry to hear you're having trouble. Are you passing gas? If you aren't passing anything sounds like a total obstruction and you'll be feeling very bad, probably vomiting, soon. Partial obstruction is similar but for me, I was usually able to pass a little gas or stool. I've have several obstructions and they are not comfortable. You know your body and when something doesn't feel right. I hope everything turns out well. [ more ]
Scott F It sounds like an obstruction to me. Hopefully it's already passed. If it persists or gets severe you'll need a hospital, but it may just calm down. Do a search here and you'll find all kinds of coping advice. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
haemorrhoids I THINK, need advice
E EoinMaxwell
Scott F First, remember that you don't know if you have cuffitis. There's no benefit in gravitating to the worst/best/first idea somebody spouts. It's easy for a knowledgable doc to identify. The ones who don't know pouches will never have heard of it. Cuffitis can vary from trivial to extremely troublesome, from occasional to constant. It's basically UC in the little bit of rectum left behind (the "rectal cuff") during the usual surgical technique. [ more ]
Rebe0505 think you need to get yourself to doctor see whats going on..no point in just guessing [ more ]
EoinMaxwell Ahh dammit. Is cuffitis common? Ie nothing serious? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
pouchitis
G GraceB
GraceB I do want to ask another question. I see that some of you are on the remecade even after j-pouch surgery. Is it helping any of you? [ more ]
GraceB I did change my diet I am slowly adding gluten free products to my diet and I stay away from sugar and try not to eat to many carbs. I do add honey to my toast,tea and any thing I want to add a little sweet too. I am trying very hard to try and figure out what agrees with me. I know we all try very hard trying to find good nutrition for our condition. You are all very helpful in giving tips on what to do on all symptoms that we may have. Thanks Grace [ more ]
Rebe0505 chronic pouchitis..no easy answer it seems but for years and i mean years) i was simply rotating full dosages of antibiotics because staying on same always resulted in resistance.. also flagel hardly the only good antibiotic for pouchitis just one of them..maybe its time to change..and yes drs.think in terms of doing the least harm to get results but if you have pouchitis and you need antibiotics than thats what one does..for me it never worked just being on a low dosage of same one... [ more ]
See all 10 replies...

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

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