Scott FNighttime leakage is a common symptom of pouchitis. If it increased when you stopped the VSL then there’s a good chance that they are connected. VSL #3 is available again, and I filled a prescription late last week. All that being said, VSL #3 alone is unlikely to successfully treat active pouchitis. A 10-14 day course course of Cipro or Flagyl seems like an easy next step, and you may get quick results. [ more ]
LarawebThanks guys all was fine last night and today was just so panicked when it happened. I'm in with GI next week as luck would have it so will hopefully get some answers thanks for replys [ more ]
Scott FIt could be a one-off, but it’s hard to know. When was your last pouchoscopy? [ more ]
Still StandingI would contact my GI and let him know what happened and see what they advise. If nothing more it will give you assurance of whether or not it is something to worry about. [ more ]
margeI put 4 oz Miralax in 40 oz of Gatorade and I only have about 10 oz left. I can’t put anymore in my body and it is working. I have to go NPO at 9:00 AM and my appt is at 1:00 PM. I might be dehydrated but was afraid to try the enema since that was new to me. Glad to know they can wash some out with the scope if needed. Thank you both for your responses. [ more ]
Scott FTap water enemas are usually sufficient if you’ve been on clear liquids for long enough, and much easier than Miralax, with less risk of dehydration. Most preps replace the irritating solution in a Fleet’s enema bottle with warm tap water. The scope can rinse away any bits of poop that are in the way. That isn’t practical in a whole colon, but a J-pouch is small. [ more ]
marzI just had a scope with dr Shen (k-pouch) I did exactly what you described, 4 oz miralax with Gatorade zero. They said I could drink something up to 2 hours before scope. I tend to get dehydrated, so that was good news for me. I drank the miralax around 5 pm and I was done emptying by 8 pm. I also always write down exactly what I did—since I have a scope every year this helps me remember. good luck. [ more ]
Kh1988Thank you for your reply! Yea, it’s weird bc sometimes my stool is darker and I don’t see the orangey/reddish color?? Maybe it is just the color that happens to come from certain food and not blood? I’ll continue to keep and eye on it and bring it up to my doctor at my next follow up. [ more ]
PouchLogicI know occasionally I think there is blood just due to color but it can certainly be something else. Occasionally I wipe and it's bright red and that is usually just irritation from wiping. I don't overly worry about it as it's not very often. If you are constantly seeing it I would possibly get it checked out, I also realize that you aren't too far from your surgery date and you are still adjusting. Good luck, hopefully this was helpful. [ more ]
Former MemberMy experience, I developed an abscess 3 months after my surgery, bad discomfort on sitting, round swollen on perineal area, I have a temp ileo but I had an urgency to go to the bathroom, even today when it’s swollen I have urgencies, unfortunately it turned too into a fistula, my surgeon said in most of cases it’s a fistula, be patient try not to put your mind into it remember that your mind can do miracles, internet is the best way to get bad stuff in your mind, wait for your doc he will... [ more ]
SolominI am not in any pain, slight discomfort. Nor does it look like I have an infection. Just a continuous feeling to go to toilet. I do not think that I am leaking anything either. [ more ]
Former MemberIt’s very bad situation I know, I have it for 2 years and some days I won’t bother but other days I can’t barely walk, if it drains man my advice is squeeze but not hard it will take some pressure alway, but off course have a doctor looking at it [ more ]
IkhThanks Scott I read manu of your messages here and you are very helpful... Today I was a bit better. I know that this Is pouchitis but anal camping Is something else I suppose... [ more ]
Scott FThis is way too early in the process for you to even begin to consider abandoning hope. That being said, you do present a confusing picture. It’s possible that you have two things going on. I’m not sure what the doctor observed that suggested a need for dilation, but it did seem to help you. If the stricture is structural then only dilation can help it, but if it’s functional (the muscles clamping too tightly at the wrong times) then pelvic floor physical therapy can be more useful. It’s... [ more ]
duck11I had one of these about 10 years ago-you really need to see a doctor as there isn't a lot of self-help. I think I did a lot of sitz baths to help with pain, and switched to a bland diet to limit stool output. Hope you get in soon-they are surprisingly painful for such little things! [ more ]
jdmhonda47sorry guys i may have wrote alittle eratic not feeling to great today alot of pressure in stomach hard to breathe , been having these feelings for awhile now. Im not sure if the cipro caused it im just not sure why im having such severe body pains even in my chest. i can carry groceries in and it feels like i hurt myself the next day its strange , my chest pain is bad and hurts to the touch sometimes , been checked for arthritis and what not , just kind of fed up at this point. There arent... [ more ]
PouchLogicI agree with Scott. There are so many things that could be going on, I bet you are still dealing with pouchitis, you may need to also be on a good probiotic. As for diet my suggestion is trying the low fodmap diet and work from there to see what bothers you. [ more ]
Scott FJDM, it sounds like you’re having an awfully tough time. You probably need to find a doctor you can trust and communicate well with, even though you’re tired of it. I’m a little confused about what happened with the Cipro. Are you saying that you think it caused your body aches, and that these have continued even though you stopped the Cipro? [ more ]
Former MemberD.D..... if after following SCOTT’s advice and consuming more fluids has made a difference; then it maybe worth making and drinking the St Marks emix hydration solution a couple of times per week. [ more ]
Scott FI’m delighted that you’re doing better, D.D. [ more ]
D.D.I did not know about the colon's function regarding salt, but I do know that I often crave salt. My worst time is the a.m. and coffee definitely was making it much worse. I think I need to try sipping on water during the night though, as when I wake during the night I have dry mouth. [ more ]
Scott FTeenagers are very, very tough, and each is unique, so what works for one will often fail for another. You’ve also probably tried so many things already that most suggestions here are likely to duplicate those. That being said, here are a couple of things that come to mind: In her travels through the health care system has she run into a caregiver that she deeply trusts? A visit/conversation with someone like that might make a real difference. She must be numb to the “joys” of hospital care... [ more ]
LilismomThank you all! I will look into the electrolytes and the Benefiber... she does take 6 mg of Loperamide/day... she doesn't have the best diet (she is 16)... Scott, you ask what stops her - it's hard to make her understand how important it is to drink her fluids every day. I am a single parent, so I have to work and I cannnot stay on top of her to drink all day long. She says it fills her up too much and she just doesn't remember to keep drinking all day long. We've tried drinking apps --- she... [ more ]
Scott FEveryone has their own ways to get motivated. I treat water like medicine that has to be taken many times per day. I rarely pass a water fountain without taking a drink. I don’t supplement electrolytes, but some folks need to. You write that she can rarely drink as much as 2 liters per day. What’s stopping her? [ more ]
RossGMy advice for incontinence is to wear a 4" X 4" non-sterile (much cheaper) cotton gauze which is highly absorbent and will prevent staining of underwear or bedding. Works well for minor leakage. You can buy them in packages of 200. I wear them all the time. Also, try not to eat after about 6pm if possible, or eat a smaller dinner portions. That should help. [ more ]
CTBarristerDog tired I have been on antibiotics for almost 25 years. Rotating between different antibiotics is the key. They still work, but I am dependent on them. They only need to work until I am dead, which is less than forever. [ more ]
Scott FDogtired, a number of us have been on antibiotics for very long periods, over 10 years in my case. I don’t need them to work forever, just long enough. [ more ]
MIKEEYDon't let that scare you I had a blood clot that created problems and it started at that point. I had belonged to the pouch group years ago that had meetings not sure if they still have them .I met so many people who like you lived a perfectly normal and I hope happy life. It will all work out for you in the long run. God Bless. [ more ]
AndreitaI'm 14 weeks post take down and I'm also still afraid to eat certain things. I know some things I will never eat again but I'm not sad because I can eat the things I like. So you had to redo the J-pouch a couple of times? [ more ]
MIKEEYSince 97 but have had several problems and 6 operations , from colostomy to J pouch again and again. So I do trial and error but always worry about everything I eat, having had so many problems. [ more ]
WinterberryYou need to eat, as well as drink fluids. If you are feeling weak, dizzy, disoriented, shaky, have headaches, or are lethargic, you need to eat proper food. Try something high protein but easy for your depleted system to digest. Try soft boiled egg, or toast with organic nut butter (peanut butter, almond butter), or make tuna salad on toast, topped with melted cheese. Add extra salt on your food for now. You can hydrate with fresh fruit, too. Have an orange, or peach, or watermelon. Make... [ more ]
Doug KWow - you went through a lot and are really tough. Drink the Pedialyte as much as possible. If you feel really dry going to the ER for an IV could help, but it’s probably one of the last places you want to be. Try some salty pretzels- the salt will help you retain fluids. [ more ]
DJJ2019If you can drink water/Gatorade etc. and keep it down, keep doing that. Do not get dehydrated, it will make things much worse. An ER visit may be good to get an IV for liquids and electrolytes. I'm coming off a hospital stay myself and I can empathize with you. Keep hydrating, get an IV if need be. I hope you feel well soon. [ more ]
AndreitaHi I have those but not only in my mouth but my lip (where the mucosa still is) and my female parts (non STD) it's quite debilitating [ more ]
Scott FAphthous ulcers are quite common for folks with IBD. Hopefully yours will disappear mysteriously and leave you alone. I don’t think the psyllium will have a big effect on absorption - it doesn’t carry the warnings about that that (for example) cholestyramine does. I wouldn’t wash down medicine with it, though. Nighttime bathroom visit have been discussed here a lot. The “Advanced search” feature on this site should make it pretty easy to track some of those discussions down. [ more ]
Scott FI haven’t bothered with barrier cream in a long time, perhaps since the end of the first year. That being said, I got a bidet about five years ago and I’m very happy with that. [ more ]
girlunkyMy doc said give it a full year for improvements. I think we will need to keep things clean dry and protected forever, but you'll get used to it. Two months is not much time, be patient with your new plumbing. Everyone differs, but I get bloated from fiber supplements, so I gave up on them. Maybe I will try again in the future. I can't say about alcohol, as I'm not much of a drinker. But for sure I'd avoid beer, because of the carbonation. Soda is also out. [ more ]
BobishTrying splashing your anus with warm water repeatedly for a few seconds, should prompt the bowels to open and for you to pass the mucus.. you will find it slowly dries up and the mucous gets less over time [ more ]
AndreitaHi I had this too and it's normal. Yes you're creating mucus and it's OK 😊 [ more ]
DJJ2019Have you tried probiotics? I swear by them. Sounds like you actually may have pouchitis, but without some of the normal symptoms like fever or aches. I hope you find a solution soon. [ more ]
Scott FRed, I’m really asking if you’re having accidents, or are truly certain that you would have accidents with any delay. Sometimes the sensation of a need to go is misleading and can be ignored, and the discomfort will pass without incident. What exactly is coming out of you 20-40 times per day? How much volume? Pure liquid, or mostly gas, or is there some substance to it? Is there always gas? The key question is what exactly is triggering your pouch (and you) to run to the bathroom. It’s... [ more ]
CrazyredScott- Thanks for your concern and the reply message. I do hold it in. It takes all of my inner strength to make it to the bathroom. I need to find a medical solution to cut down the number of trips. If I can get it down to 10 or less, that'll be OK with me. [ more ]
Charlie1026Wow, that was incredibly straight forward and exactly what I needed to hear. Who am I kidding - this sh*t ain't going away! No pun intended ... [ more ]
Scott FUC is a “relapsing/remitting” disease. It comes and goes for most people without an identifiable cause, but the human mind is eager to try to make sense out of the pattern. There is surely a causal process, but it’s operating obscurely at the cellular and molecular level, largely indifferent to our coarse actions and unreliably responsive to treatment. We imagine dietary causes, miracle cures, behavioral and mood effects, etc., because being a leaf in the wind is uncomfortable, and because... [ more ]
chili123I found my 1st one that required surgery to be off the chart. Thanks for your reply....I will give it a try [ more ]
AimcHi Chili, what's really important for you now is to stay hydrated. Maybe drink some white grape juice, or coconut water to try to get things moving. Some people say to drink a carbonated liquid, I've never tried this though. Try some hot liquids. You really shouldn't be eating if you think you have a blockage. Try to firmly massage your abdomen. Important, if you are having severe pain and vomiting it's time to go to the emergency room. I've had a few blockages, and they are no fun what so... [ more ]
WinterberrySame here. I had difficulty sitting, and especially when trying to stand up. Shooting pains, sometimes dull pain. My surgeon said it was normal, caused by the swelling in that whole area from everything being moved around, pushed aside, cut and sewn during surgery. It could be your small intestine reacting to finding out it's now a J pouch. My discomfort stopped after a few months when the internal swelling went down. [ more ]
DoggtiredIn am also taking Humira. (6 months- every 2weeks dosage) It is difficult to know how it is helping. My GI says it combats the inflammation. I still have cramps/urgency and leakage so not answer to all problems, I also take extra strength Visbomme probiotics daily. Wonder if they makes matters worse? I have pouchitis frequently treated with cipro and flagyl, which work until I stop taking them, and the cycle starts again, until it gets do bad I get desperate enough to go back on them. They... [ more ]
Mike MarchThanks for this. I actually saw Dr.Chutkin twice. She is a FODMAP //VSL3 believer. I will credit her as being the first GI doc who espoused dietary control of my symptoms! I couldn't stay true to the diet and wasn't offered any practical advice on how to self-administer a homemade VSL3/Cocunut oil enema (sounded easy in the office; not so easy in my kitchen (cocunut oil had to be heated as to mix the VSL3 in). I believe my attempts caused a fissure which still hasn't healed. She wasn't that... [ more ]
Mike MarchI have been feeling much better on 250mg Cipro in the morning and 250mg Cipro and Flagyl at night. Lomotil and 1%Tincture of Opium in smallish doses. I'm just off a five day fishing trip; I could not chance being sick (fishing boat bathrooms NOT approved for people like us!). I was careful on what I ate and limited the amounts. Today, I will stop the antibiotics; keep on a strict SCD/Whole30 type diet. I've failed (gotten sicker) everytime I stop/challenge the meds. Now that I have a... [ more ]
EnterinI did a gastroscopy yesterday. The stomach is ok. The doctor also wanted me to do a blood and urine test. I haven't done this for 3 years. Everything's fine except CRP, which signals inflammation, now I don't even have the temperature anymore. [ more ]
Scott FIf you have no symptoms you’d be better off if they hadn’t measured your CRP. What a waste of your time and mental energy. I’m glad I don’t know my CRP. None of these tests are perfect, and most of them are useless at screening for problems. When they are done without a clinical reason they are often just noise. [ more ]
Scott FI’m glad they can get Rectiv for you. The most common side effect is headaches - if those become intolerable you can find out where the nearest compounding pharmacy is, and ask your doctor for nifedipine or diltiazem. Hopefully the fissures will be long gone before then. [ more ]
tfThank u for your reply. I checked again and they can order it. I guess the tech just didn't do her job and just told me no. I was hoping for something cheaper but it seems what u r saying that is complicated. [ more ]
Scott FYour pharmacy should be able to order Rectiv. Other meds that work for this are nifedipine or diltiazem, but I think you might need a compounding pharmacy to make up an ointment of one of these. That’s much more complicated than just ordering Rectiv. Are the pharmacies telling you tat they can’t get it, or just that they don’t have it in stock? [ more ]
CTBarristerI have not heard of biopsies being able to determine the existence of Crohn’s or not, but in any event the actual diagnosis at this stage less important than knowing the extent of it. Inflammation can be labeled but regardless of labels, it must be treated. In this case, the treatment is takedown. [ more ]
Kh1988Wanted to leave an update! Got a call today from my surgeon. She said the biopsies came back ok. Only showed mild inflammation. Nothing concerning was seen and nothing that appeared to be Crohns. Most likely diversion Pouchitis. So we are moving forward with takedown in one week! [ more ]
Scott FThe doc has you on the right path. If it’s diversion pouchitis then the best treatment is takedown. If it seems to be IBD-caused inflammation, then getting that controlled with medication before takedown will give you a better result. The biopsies aren’t perfect at telling these two different conditions apart, but they give you better information than you would have otherwise. I had a fair risk of Crohn’s before surgery, and it’s never been ruled out. Pouch failure is more common in Crohn’s... [ more ]
WinterberryWhen I had the external bag, I was eating lots of well cooked spinach. Not all of it went into the loop ileostomy into the external bag. Some of it bypassed it altogether and came out through the (not yet connected) j pouch and came out like stool. My surgeon said this was possible. I guess if the food is slippery or very soft, as my spinach was, it will think it should come out like poop. I took it as a good sign that my new j pouch was ready and willing, and all that was left was the... [ more ]
AimcI also had blood mixed with the mucus. My surgeon told me it was normal. [ more ]
PouchLogicI believe I also occasionally had some bloody mucus from. I wouldn't overly worry unless there is a significant amount of blood, if it gets worse I would definitely be getting ahold of your doctor though. Good luck [ more ]
TE MarieEric there's a bunch of people on here that are rooting for you. Post when you can. Thanks for the update Sharon. [ more ]
skn69Yes, I did. I took him a fancy scarf too...he needed something nice to make him smile. Never, ever underestimate the power of a visit from a friend...a little bit of humor, a few jokes and a hug go a long way to help people feel less lonely. Please, please, if and when possible, go visit someone in the hospital or at home convalescing, who needs help, warmth, friendship or a coffee from the outside world. I always visit and never empty-handed...even strangers. A flower, a stuffed animal, a... [ more ]
MaxxHello SWG - I did a few things and it kind of solved the problem. I took antibiotics (Ciprofloxacin 550 twice a day) for about 10 days. (earlier I was doing shorter course). I stopped drinking tap water, I use a purifier at home & bottled water when outside. I try to eat freshly cooked food and stopped eating leftovers most of the time. After doing all of this, my diarrhea episodes have been reduced greatly. My doc thinks it all happens due to bacterial infection and because of low... [ more ]
SWGHi Maxx - My son is experiencing similar symptoms to the ones you described in this post. Have you discovered a way to address them or has it resolved? [ more ]
MaxxScott - I have tried Metamucil that worked okay to temporarily relieve symptoms. I am having issue in only those 4-5 days when I have too watery stool and a sick feeling, bloating etc. After that episode is over, the stool becomes consistent enough. Even get constipated sometimes. [ more ]
AimcWow sorry, I meant pouchitis. Not sure where that came from. Stricture not structure also. [ more ]
Scott FGosh, not peritonitis, I think. It could be something not sensitive to the selected antibiotics - Giardia, Campylobacter, Shigella, C. Diff, even amoebas. It’s probably time for more tests, unless you’re getting better. OTOH lots of us seem to take longer to recover from these than in our pre-pouch state. [ more ]
DJJ2019How many doses of the antibiotics have you taken and what dose? Have you ever had pouchitis? If it is pouchitis, then being sick for 10 days is not the same as being sick for a day or two, meaning the antibiotic may take longer to take effect. I personally feel the antibiotics working within 12-24 hours, but if I've been sick and dehydrated, then sometimes 48 hours, but I know it is working., and the effect is gradual. I hope you start to feel better soon. [ more ]
Accept ItSo sorry to hear this. Hopefully you are on the road to recovery!! [ more ]
PouchbroUpdate I am in the hospital now with a “Chrons like flare” and fistula. Coprocessor/flagyl, blood transfusion, iron infusion, insulin shot, budesonide, prednisolone, Canasa suppositories, I came in because my body cannot take it anymore. I think Chrons or UC could be causing the gas. [ more ]
DeedeehHey CTBarrister thanks for that advice, I will do that now [ more ]
CTBarristerThis drug is more commonly known here in the USA as Entyvio. You might want to edit your thread title to do an a/k/a in the thread title, in order to get more responses from recognition of the term. There are people on the board using Entyvio. [ more ]
CTB23I have my first case of pouchitis and was told to call back if it returned after stopping the antibiotic. Hopefully it won’t! [ more ]
Scott FIt’s possible that the pouchitis is returning. That’s what happens to me if I stop taking antibiotics, though each person’s symptoms are a bit different. [ more ]
Former MemberI suggest Carlesta adult skin protectant. It will heal raw skin overnight. [ more ]
Former MemberIlex paste https://www.ilexhealthproducts.com/usd/ https://www.ilexhealthproducts.com [ more ]
RajMetamucil will surely thicken up things but there's a catch. It may also come with added gas pains and increased urge to rush to the bathroom. Focus on foods that fit you. Eat alot of bread, pasta , hard boiled eggs(if they suit) , bananas, butters,chicken. Steer clear of large portions of fresh fruits or salads, sugary foods. A little sugar won't harm but trust me you don't want to overdo it. I rarely eat chocolates and desserts now. They give me instant diaroehha. [ more ]
EnterinI did a stool test on parasites and viruses . Parasite Criptosporidium and Entamoeba hystolitica / dispar were detected. I drink antibiotic, today is the last day.metronidazole 3 x 250 grams . [ more ]
EnterinThanks a lot. I'm okay, but I only have 64 pounds and I'm 185 cm high. Al is more at psychic level, I do not eat much. Before this diarrhea I ate a lot of tomatoes [ more ]
WinterberryHello, Enterin. When I have urgency or frequency, it is usually because of something I ate that had too much fiber, such as Brussels sprouts, raw salad, whole wheat bread, or if I ate too much at a family party. When this happens, I eat light meals for two or three days so my pouch system can rest. No fiber, no spices, no acidic food, no raw food. Eat fruit, but no fruit skins. Eat vegetables that are very well cooked and soft, but don't eat the skin. Skins and peels can cause more loose... [ more ]
JJAI will caution you against letting them to a traditional “lay open” fistulectomy. They did that to me and it left me incontinent. I’ve since had a spinster repair, use thicken meds and a cotton ball tucked up there and have a spinal chord stimulator. I do ok with it (still love my life and deal with occasional accidents). Docs who did my repair said the traditional lay open surgery should never have been performed on someone with a pouch. Humira or a seton are various options to treat a... [ more ]
AimcRaphael, I think you are prob. close when you say they seem to not know what they are doing. I think they are really hard to get rid of. My surgeon put a stitch in mine and it healed a bit later. I now have stricture. I honestly don't know if they are related, but I know they all seem to not want to deal with the fistulas. I guess we just have to go with our guts and pick who you believe to know their stuff. Good luck with who you decide to go with. Keep us informed. Aimee [ more ]
CTBarristerThis is very good advice. It should be added that dietary changes will not necessarily lead to overnight or instant improvement. It will lead to improvement of SIBO over the long term. Low FODMAP is a good diet but any less structured diet restricting sugar and processed carbs will do the trick. [ more ]
PouchbroI’ve recently read that adding probiotics (as suggested above) May worsen SIBO. Small instestinal bacterial overgrowth, since you already have an overgrowth ADDING more bacteria through pro-biotics may (and logically it makes sense) worsen things. Try the low FODMAP diet and remember that carbs such as bread and rice turn into sugar and the bad bacteria’s feed of sugar and carbs causing gas and other issues. [ more ]
labloverNo new meds as I recall. After the last round of antibiotics he was okay. Plus to stay away from beans and stuff. [ more ]
PouchbroIf you are lactose intolerant or have some sort of allergy and are eating dairy or the problem food it could likely be discharge & mucus from your anus passing rather than actual stool passing through. This happened to me when I was in your position. [ more ]
AndreitaHi this happened to me after the second step. The nurse told me that the volume of stool is still less than if you don't have the bag at all. It is good that not all of the volume goes into the j-pouch yet so it still recovers. After the second step I needed convex flanges instead of the flat ones. Without them I leaked like crazy and the disk park around the stoma didn't stick at all anymore. [ more ]
Scott FJust to be clear: is this a loop ileostomy? Is your concern that too much of the stool is bypassing the loop ileostomy and coming out from the anus? If the above is correct then you needn't worry about an infection. Your J-pouch may not be getting quite as much rest as intended, but it’s likely to be just fine. Good luck with that wound healing. [ more ]
PouchbroKombucha will leave you even more bloated due to the carbonation and most are basically packed with sugar especialy since sugar is used during its brewing/fermentation. [ more ]
AimcI swear that area was numb for days for me. I guess that's okay because it didn't hurt. [ more ]
MreynaYes I did l My first one in Minnesota was not bad. The doctor in san antonio and then my home town was extremely painful after I woke up. I just dont think these drs had done them enough😕 [ more ]
Scott FEmuhyee, you don’t say what you expect to be your new normal. After J-pouch surgery, a normal BM has a consistency more like pudding than solid. A normal frequency is 4-6 times per day. The most important benefit is that the urgency should be gone. People report highly variable amount of time for this. I was most of the way there in 6 weeks after my surgery, and some people say it takes them a year to fully stabilize. [ more ]
CTB23I was able to start working part time about 6 weeks after takedown but probably could have gone back sooner. Really practice kegels when she is able to. That should help also. Starting school half days may help because you are usually more active in the later afternoon. Lomotil or Immodium can help with this once the surgeon gives the ok. I was in my 60’s when I had my surgeries and my sister was in her twenties. We do have a friend who’s son was about 12 at the time of his. I can ask her... [ more ]
AimcIbdmom, I don't think in the beginning it's about how many times you have to go as much as it could be making to the bathroom in time. Barring complications, a month should be a good amount of time to wait to go back though. Good luck to your daughter. Hope all goes as planned. Aimee [ more ]
IbdmomWow, I didn’t think it would take that much time. I think that physically if all goes well, she will be ok. I think it’s more about training the body to hold it in for extended period of time. I think that is going to be the challenge.i was thinking that she may be able to go back after a month. Maybe she can go back as half days in the beginning & of course she will be allowed unlimited bathroom breaks. Thanks for your input. That sounds like you are doing great at a year after surgery. [ more ]
n/aHe had me come back 3 times for the doxy injections (done during a pouchoscopy-type of procedure), but no luck. $$$. I had my pouch removed in Oct., along with the fistulas. No more probs, just a tiny bit of leakage now and then. Have you tried a search with "clip" on here? I sorta kinda maybe remember some possible threads where clips were being used/tried ...? [ more ]
JHendrixThere was a paper published a year ago. It only involved 29 people (both UC and Crohn's). Twenty six were successful but 16 of those required more than one procedure. One (of the remaining 3) had serious complications. So, the stats are good but the number of participants is low. I will meet with him and see where it goes. Are you managing ok with your fistula? [ more ]
n/aDr. Shen "experimented" with me about 6-7 yrs ago using doxycycline injections in fistula, they didn't work. Did you ask him how many times he's done it, and what the results were with those patients? [ more ]
slouchypouchUpdate for anyone who wants to know. I had staph infection, maybe from all of the failed attempts from multiple people to get that NG tube installed. It was a disappointing experience. [ more ]
slouchypouchThanks Andrina, I'm hoping the fever is due to catching a viral illness from the staff. I had no less than 6 pairs of hands trying to jam that NG tube into my nose before I took over. My obstruction last year required a resection and staple/suture and about 4 weeks in the hospital before my gut. Is it possible for those metal sutures to cause problems later? Besides staf infection/flu, etc, I'm looking for plausible explanations. Unfortunately no one drew blood before releasing me. Very... [ more ]
JaypeaIf you have no fever, malaise, other symptoms of feeling unwell then it is likely just a post op fluid collection. This does happen and the body resorbs it slowly. Monitor your well being carefully and stay in touch with your surgeon. [ more ]
Kh1988Thank you!! I definitely hope that’s what it is. I will call the dr right away if I get a fever [ more ]
Scott FIt’s probably a hematoma that will clear up on its own. If you spike a fever call your doctor. [ more ]
MarjThanks for your response. Hopefully since I have 2 different opinions from the Hopkins surgeons (one in favor of operating and one in favor of conservative treatment) a third opinion will help. ) The third person has to agree with one or the other. I do agree that I will still be the one who has to be comfortable with. the decision and that I will be the one who has to make that decision. I want to talk to a physician who is primarily interested in Inflammatory bowel disease and works or has... [ more ]
Scott FSome people have gotten great results from adhesion surgery, but others have fared poorly. A third doctor’s opinion probably won’t shed any more light on this - it’s really about how you feel about gambling in general, and this gamble in particular. I’m sorry that you have to deal with this, and I hope you can find a path that feels right. [ more ]
MarjScott , Understand that both surgeons are trying to be honest that with lysis of adhesions there is no guarantee that I will be better. Because of the random obstructions andfrequent hospitalizations I feel that we can't travel anymore . I have been hospitalized while vacationing and that can be very scary if you are not near a larger hospital. I also don't like to be put in the position to decide which doctor might be right when one says operate and the other says you are better off to deal... [ more ]
Scott FCuffitis is more typically associated with bleeding, but if pouchitis causes ulceration, that can bleed, too. You should probably find a knowledgeable gastroenterologist. It’s best to think about treatments before you give too much thought to pouch failure. Most conditions are straightforward to manage. [ more ]
PouchLogicIt could easily be pouchitis. See your doctor and possibly get a GI so you know that you have a pro. I've never dealt with cuffitis but pouchitis is usually easily dealt with with antibiotics and or probiotics. Good luck [ more ]
Scott FThis could be a pouch prolapse. The test to see if that’s it is called defecography. It’s a little embarrassing but otherwise pretty straightforward. [ more ]
Scott FDavid, I can’t tell for sure if by “stopped up” you’re describing a blockage in the intestine, something preventing the pouch from filling, or something preventing a full pouch from emptying. Do you have a sense of which of these seems to be going on? [ more ]
Scott FFor some of us severe gas that just won’t quit is a sign of SIBO (small intestinal bacterial overgrowth). It can be treated with a course of doxycycline or (more recently) rifaximin. Doxycycline worked for me (it was a long course). [ more ]
PouchbroI am over on year post op and I am still having major issues with gas. I agree that there is no medication that helps much with gas, only medications that help pass it (Simethicone aka Gas-x does not stop gas, it breaks up gas bubbles to make it pass easier). Beano only works for what it is intended for, beans and cruciferous vegetables. The only way to relieve the pain is to pass the gas and avoid gas causing foods like sugar and carbohydrates. I have been dealing with SEVERE gas... [ more ]
AimcSo glad things are getting better for. Just be patient with the process. Some days will be better than others [ more ]
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.
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