Good to be healthyWith my first before surgery 24 weeks. With my second post surgery I thought I could feel my very active kicker 13 weeks along my scars. I also had a csection scar from the first [ more ]
babygooseI'm 25 weeks now with my 2nd and felt him move around 17 weeks. I had my first before surgery and felt her around the same time. [ more ]
jodiloveslifeYou will definitely know! Felt mine around 16 weeks. Congrats too!! [ more ]
LesandiegoI live in drought stricken southern Califoria. It's humid during the monsoon season, and dry during Santa Ana winds. Snow and mountains are 1 hour away and the beach is 15 min. I don't think I have ever been "diagnosed" dehydrated. I used to never sweat, but when I had my ostomy, I dropped buckets of sweat (when gardening) to where I looked like I just got out of the shower, and it would cause my ostomy bag to slip off. Now that I have my pouch and go to the bathroom less frequently, I am... [ more ]
jpouchmikeI am in middle of 3 step pouch redo with Dr Remzi also. Step 1 was in July and he is adamant about waiting 6 months before step 2. I am curious who your girlfriend's surgeon in NY was. I too was diagnosed with the "sideways" pouch and my initial surgeries were in NY. Feel free to PM me anytime [ more ]
AllyKatOk so I see your in NY. I Had something similar to your girlfriend. Cleveland recommended pouch removal and a total redo. But my surgeon in NY was able to discount the pouch, clean out the infection, make it straight ( it also strangely moved), and hand sewn it back. This is call pouch advancement. Please contact Dr Milsom at Cornel, NYC for a second opinion. I have been pain free ever since, 15 years and counting. [ more ]
liz11Dr. Remzi is the best. If he says do it in three surgeries.. he is saying that to ensure success. He is probably the most knowledgeable and talented surgeon to fix broken jpouches in the world. I had similar issues after my jpouch was first connected. I got to Dr. Remzi and he did an immediate disconnect. I then chose between a 3step redo and a pouch removal. I chose the later. Anyways... point is.. Dr. REmzi really cares for his patients and he will do whatever it takes to ensure success... [ more ]
Scott FHave you actually ruled out pouchitis? "Pouchitis" just means "inflammation of the pouch," so the simple anwer to the question is "no." OTOH, lots of us have other digestive issues in addition to a J-pouch (e.g. irritable bowel syndrome, lactose intolerance, celiac disease, etc.). If you do some careful experimentation you might find some foods you don't tolerate. While I won't cheer for fried foods (except when i'm eating them), most J-pouchers can digest greasy food as well as the coloned... [ more ]
GraceBYes you should stay away from fast food. Fried or greasy food is not good for us j-pouchers. I find it very difficult to gain weight also. I try very hard but there's only so much food my system can handle. Try eating small amounts of healthy food every few hours. It took me a long time for my system to get used to eating differently. I am one of those rear cases that found it very difficult to eat after the surgery. But I know that foods effect everyone differently. Also I find that wine... [ more ]
Jasmine 2I have had my catheter in February 2014, then took it out and that is the first time leaving my catheter in for 3 weeks didn't work for inserting my catheter. So I've still got my catheter in and I will probably just keep this way. I cut it down so I can have it long enough to empty and push it in flush and cap it off. I am using my 30 Fr. Marlen....my valve in longer than it used to be probably from the stricture. So I have to have it in for the length of my valve and then about 4-5 inches... [ more ]
dpolI lived with a tube always inserted for 3 months. I have wondered if it would be possible to have a small tube always in that we can cap where the stoma is and just insert a tube over it when we need to empty the pouch. It would be great to know you can always empty your pouch easily whenever you want. The fear of not being able to insert the catheter or having to go to extreme measures to get it in is a pain to live with. [ more ]
Jasmine 2I do think it's a good catheter to have when you can't get in you own catheter, 20 Fr. or 28 Fr. Bard Red Rubber, as it is pointed and stiffer. For emergencies, I will be getting one if I can't find one in different material. Over time the part of the catheter that was in the pouch past the valve, did get softer. [ more ]
lynne-saQuick answer: yes and yes. I had pouchitis from the first post-j-pouch surgery check-up and continuously for 8 years. Was on cipro + flagyl for 2 weeks and off for 2 weeks for years, alternating between 2 weeks of nausea and then 2 weeks of pain/urgency -- month in and month out. After 8 years I was so miserable I had a k-pouch created at CC -- that was almost 12 years ago and I am better off now. Diet limitations are easier to take than nausea or pain and urgency, at least for me. [ more ]
MysticobraEleven months past surgery and I have a gnarly looking belly too. I am skinny and it looks weird. Bumpy. I don't exercise and am not sure if it would help anyways. I do miss my smooth belly though. It is what it is. Being 58 I am not too worried about it. I don't think now it will ever smooth out more than it is. Too lazy to exercise to see if it will.... Hahaha. [ more ]
PluotMy takedown was about a year and a half ago and my belly looks normal now. I remember having a raised area around my old stoma site for a month or two. It might have been longer but it's definitely gone now. [ more ]
skn69Its been 35 yrs since my k pouch creation...still waiting for my tummy to look normal...But then again, I am an optimist. Sharon [ more ]
allswellI am also having trouble, and I am at the same point in my recovery. I recently had two good days and just about slept through the night, but today was awful. I've gone about ten times so far, very painful, and alot of gas that is very painful on exit. I have no abdominal pain, it is all extremely low, right at my bottom and it is affecting other things in that area too. sometimes feel like stool is lodging in a pocket inside. It cuts like glass, or burns or itches r both. sucks! I have been... [ more ]
Scott FThe gas has to come from somewhere - carbonated beverages, swallowed air, or bacterial production. Beano can sometimes help, if it's related to specific suspect foods (beans, broccoli, etc.). When gas started to give me a lot of trouble a couple of months of doxycycline took care of it. It was most likely bacterial overgrowth (SIBO) in my case. J-pouchers are a bit more sensitive to gas build-up, since most of us have lost the ability to safely fart off the toilet. [ more ]
dgtracysounds like the way i was with my pouch. my surgeon said my pouch looks great, awesome in fact. but i just kept having a rough go of it. flagyl and cipro helped alot but whenever i came off gas and all increased. i ended up having more issues and went to another temp ostomy for a bit. [ more ]
SpookyI took the pill for a 4 year span while I had an ileostomy and then my j-pouch. I suppose it worked fine, because my periods were always like clockwork and of course, I never got pregnant. I no longer take the pill but that is for other reasons. Nothing to do with the pouch. That being said, if you are truly worried about absorption being a problem, you could consider another form of BC, such as the patch. [ more ]
liz11res interesting stuff. Though I no longer have a jpouch (had it removed about 2.5 years ago) I have bad sibo diagnosed by Dr. Shen and my local GI. I alternate antibiotics and try to stick to the FODMAP diet. I have noticed symptoms are significantly worse at certain times of the month. So much so, that my local GI has suggested I proactively use the stronger antibiotic before those times. [ more ]
resI do have major issues with IPS and it is especially worse during my period. I used to take Seasonique before the blood clot issue and it definitely helped some of the issues I was having around my period. I believe he was referring to birth control. [ more ]
MysticobraHi. I can take one lomotal and it plugs me up. I don't use anything to thicken and I feel as though I get plugged up. I eat a banana and Apple everyday and it works to thicken but seems like when I bm only some comes out and it just stops when I know more is there. Weird. Just have to experiment with it all to see what is best for you. I still am experimenting with things at close to a year after. Takes time. [ more ]
dgtracyI dont believe it has reoccurred. i have even gone up on the dose and have not experienced the same thing as before. i was taking the lowest dose which was 1 pill every 6 hours..now with this cold i have im doing 2 every 6. Thanks Jan : ) [ more ]
Jan DollarThe main reason not to take both is that it is like doubling up on the same medication. But if you are alternating small doses, it should not be a big deal. You might have felt dry and blah due to a sensitivity to the atropine in Lomotil. Imodium does not contain it. It is a very small dose in the lomotil, but some people are very sensitive to it. Could just be coincidence too. If it recurred with further lomotil dosing, you could be more sure. Jan [ more ]
rosevioletI took it a couple of times for about 10 days each time along with root canal dental procedures. Side effects were wonderful: slowed down bowels, less gas. I actually liked using it. No negatives. Rose [ more ]
Scott FI haven't noticed watery stools from amoxicillin, but some soluble fiber (e.g. Metamucil or Konsyl) could bulk things up. More important is continence and lack of urgency, also things I haven't had disturbed by amoxicillin. I'd recommend *not* adding or increasing Imodium or other bowel slowers until/unless you have evidence that you need them. [ more ]
Jan DollarI would think the problem is the amount of fruit sugar (fructose) in strawberries and grapes, not the tiny seeds in the strawberries. Jan [ more ]
dgtracyJeffD thats crazy strawberry seeds do that to you, they are so small! i had a strawberry and bannana smoothie one time, had more srawberry then bananas and a couple hours later those seeds were strewn through my ostomy bag. i was more worried about them causing a hole. but was all good. [ more ]
Scott FLactose intolerance can cause all kinds of gas. It's important to know whether that's an issue for you. [ more ]
Marianne77Cheese bothers me sometimes too. Have you tried taking lactaid before hand? How long since your surgery? [ more ]
Jeff DI had two tacos yesterday for lunch at noon without many of the fixings. My stomach was rumbling every few minutes for 10 hours until I went to bed. This happens with pretty much everything I eat, however. I've posted on here if there is anything to control the gas rumblings. I've tried Beano with no success. [ more ]
Marianne77Sorry, I just saw your response. My mornings are pretty slow like yours but in the afternoon I go a lot. I had UC for about 11 years before I had surgery. It was pretty miserable and I never really went into remission. Steroids would help but as soon as I tapered off I would flare again. I was hospitalized a few times on IV steroids when it got really bad. I didn't wanted to try Remicade because of the side effects and I am a teacher and around germs a lot. I'm not back at work yet though. I... [ more ]
allswellWe look about the same age maybe. How long did you have UC for [ more ]
allswellMarrianne - that sounds like me. I think I'm at about ten too, and six of htose happen in a two hour period, which is really discouraging. [ more ]
dgtracyJeffDC after my jpouch connection i was fine for a couple of months then i started having this aweful wave of pain. when these waves started i wasnt going to the bathroom at all, no gas no liquid nothing. whenever that did happen i would end up in the ER where i was given dilauded to ease the pain, then would get an xray almost each time. xray showed nothing except my pouch was pretty full. after doing this about 10 times in a year my surgeon scheduled a mucosectomy where she discovered my... [ more ]
clouseauI had blockages for many years because of strictures and Dr Shen recommended drinking more fluids and taking a digestive enzyme before every meal and it has made a world of difference. I've been in the ER many times and had blockages at home 40+ times and have had only 1 in a year now. hope this helps. [ more ]
JeffDCMy symptoms were sharp pains just below the stoma site. These got strong enough to cause me to double over in my chair at work and wince. It would come and go, then get strong again. I ended up in the ER, and eight hours later, was told they could not find the cause. In a followup with my surgeon, he thought the intestines got kinked. About two weeks later, had some similar pains, although not nearly as painful and did not last as long. [ more ]
clouseauI went to a holistic clinic in Palm Beach FL called Hypocrites and they taught us to do wheatgrass implants, an enema. I did it it for a while with success and also drank wheatgrass and a green drink with sprouts but then when I went down there they put me on all raw veggies and it destroyed my system, never been the same. [ more ]
Jan DollarI suppose there would be no harm in it. A few people here have tried it, but I've never seen anyone come back and claim any significant or lasting results. You are probably just as well off rinsing daily with a tap water enema and taking oral probiotics. Yogurt is a great, nutritious food, but it does not contain enough probiotics to colonize. Jan [ more ]
skn69At one point in '99 when I was having severe and chonic problems (constant cysts) I tried seawater (they said that it had healing properties) then yoghurt and goodness knows what else...nothing helped on the level that I did it (I have a k pouch so I just swished everything in there with a syringe...Easy)...I guess if you wanted to inject probiotics it would be easier to use what is in a capsule rather than pure yoghurt but I am not sure if it a very good idea...this is a Jan question). Good... [ more ]
clouseauYes this site is awesome, just made my contribution, such a wonderful investment. [ more ]
TE MarieFYI I stumbled on The Red Lion non-profit j-pouch group in the UK. Per their a membership application the an annual membership cost is 10 pounds I think. (I don't have the symbol on my keyboard.) I don't know what the conversion is into US dollars but guess it's more than $10. The point is that there is a membership fee. It appears as their group's online support website is set up is similar to ours. The way Big Daddy Bill has our group set up anyone can join free regardless of their ability... [ more ]
Jan DollarOh yeah, Simponi is approved for RA too. So, if you have that, you have easier access to all the biologics. For me, it is all interconnected and it helps to think more globally, rather than individual targets. Still, I do occasionally use Canasa, but it is pretty rare now. Jan [ more ]
LjzThank you Daleer, Jan and JJA for your response and ideas! I will check on length of cuff but I think it is not big- 1-2 cm. I will have to bring up the bidet to my hubby, if there's a chance that could help and will go back to 3-4 hot baths a day in the interim. Will also talk with them about Sulfasalazine- I did ask my nurse about it yesterday as I was on it for RA before my surgery and it did help the RA inflammation. Would be great if it could be that simple! Keep the ideas coming, as I... [ more ]
JJAI used to have chronic cuffitis, and once I got my bidet, it really helped. The soothing water, being able to keep that cuff area very clear of stool, made a huge difference for me. I developed chronic pouchitis later, but I had about 2 great years in there post-bidet with smooth sailing from the cuffitis. You can buy one for under $200 online. I use the $179 biobidet i3000, but there are many different ones on the market. I like the range of water pressure and that it hooked directly up to... [ more ]
LjzInteresting.. I will ask about the Budesonide suppositories, but now the inflammation is all throughout anus as well. I'm not sure I understand how it causes fistulas.... Can you explain that. I'm happy to not have had fistulas and surely wouldn't want to add that to my lust if problems. Thanks for your input and I hope you are doing better! Laurie [ more ]
desisn00psRegular Budesonide pills never worked for me but I've been on Budesonide enemas for 2.5 years. While the enema works well and improves quality of life, it is impossible for me to get off and God only knows how hard I've tried. My pouch flares severely without the full 9mg dose and my GI doctor is saying that it has caused the 3 fistulae I have from pouch/cuff to the vagina. If you're thinking of trying it short-term for a couple weeks, that might be fine but long-term is not advisable. [ more ]
LjzThank you! I appreciate your response! I've held off and am seeing some improvement so maybe the 10 prednisone and Cortifoam just needed more time. Of course, in my desperation, wanted immediate relief! Patience is a virtue, especially for us jpouchers! [ more ]
JJAPlease report your employer to your state insurance commissioner if that is true. You may be asked to sign something that allows providers and your insurance company to communicate about you and your info, so they have the ability to bill for your services and get reimbursed, but they don't have the right to allow these entities to share your info beyond that relationship. Were they asking you to give up broader rights than that? "Hospitalization" is considered an Essential Health Benefit... [ more ]
CeeeeCeeeeIt was wonderful hearing from you! Your account of how things are going will give much strength to others facing similar challenges. Thank you for keeping us up to date and continued good wishes! [ more ]
waitecAs promised, I thought i'd give an update on this just in case anyone else is in a similar situation with excess fluid/mucous discharge before their takedown. Can't believe it's been a year since i posted this (time flies when you're having errr fun?). It seems I was worrying over nothing really. I spoke to my specialist nurse about the excess mucous discharge, we kept an eye on it, and was told it was slightly unusual, but hopefully nothing to be too wary of. Anyway, had my takedown in May... [ more ]
TE MarieI'm glad you are getting it checked out and think you've found the perfect person. She can have it checked. I repeat, "I had no fever", I had a white discharge that I did not think was normal, it did not smell. This is why I think anyone having question about a discharge should be satisfied as to what it is and by a medical professional. Not every infection causes a fever, it is hard to describe discharges, as it's hard to describe a pain and on and on. Sometimes we can help those asking... [ more ]
TE MarieLusia, I think you are experiencing adhesion/scar tissue pain at your stoma site. [ more ]
LuisaThank you for posting this question Gin. I had take down surgery late September and am also wondering how long before things normalize but I am feeling MUCH better. An issue I am having trouble with is a nagging pain in and around the area where my stoma used to be. I was at my surgeon yesterday and he couldn't find a hernia. Have you experienced this? Luisa [ more ]
GinLynDerek, thank you sooooo much. Saw my surgeon today again and he has tweaked meds and encouraged me as well. Turns out I have a touch of pouchitis which is also throwing everything off! Gin [ more ]
TE MarieISU Jed I agree with your description of the care received at the Mayo Clinic. My GI treats me, not just my j-pouch problems. He's referred me to other departments and they all work together. I feel better because of the integrated approach to my health care that I receive there. [ more ]
ISU JedMy experience at Mayo has been exceptional. Everyone I've had contact with has been down to earth and very professional. The physicians and surgeons have all given options but always say,"we're going to do what you want to do". I've always felt like my voice is being heard. As many of you know I'm roughly 2 weeks out from my end Ileostomy/Ken butt surgery. As I've looked back at the last 20 years I came up with this - I have no identity. Seriously, the list of drugs, diets and lifestyle... [ more ]
TE Mariecolonless commodore, I don't understand your surgeon either. I'm confused as a surgeon's job is usually to perform surgery to save the life of the patient or as in your case to improve your quality of life. How does your crohns disease factor in here? One wants to keep as much of their intestines as possible but on the other hand it doesn't make sense to keep your j-pouch if it's causing the resections above it. Does your pouch have anything to do with the resections? It appears to me that... [ more ]
AllyKatWho is this Dr that is doing Fecal Transplant in a capsule? I would like to see him? I thought the FDA shut this down on,y to c diff [ more ]
RocketJan, That is great to know. I do not dring that often, but when I do, I drink. I had a graduation for my son this past Sunday with my family and had it at a restaurant. It was BYOB so I bought 5 bottles of red wine. When I kept on drinking, my daughter said I am having too much. I said I only had 1 glass and she responded, "Yeah, that is the 5th 1 glass of wine you have had." I thought that was pretty good so I laughed along with my cousins. Rocket [ more ]
billysquaredThank you all for the great responses to a very vague question. They are all received with gratitude and apprehension. I have not received mine yet but I was told on Halloween that I would be getting my pouch for Christmas. I have this issue because all I have ever been is a long/short haul trucker and was thinking this would hinder me on my options for employment. but thanks to all the positive responses and encouragement I am going to go back to school for a different career. But not for... [ more ]
SpookyEveryone is different. Unless you have having significant functional problems with your pouch or ostomy, it shouldn't limit the career you choose. I just happen to have a desk job, but otherwise I'm extremely active with horseback riding, yoga, jogging and weight training. (I did these things with an ostomy as well!). Pretty much the sky is the limit, within your own personal comfort zone, of course. Best of luck to you! [ more ]
Shainyi have a loop ileostomy. i have no limitations. i do boxing (full contact sparring), running, soccer, weights. as long as there is a toilet available to use every couple of hours it should be fine [ more ]
rachelravenPretty certain my only issues with pouchitis were NSAID triggered. I avoid, too, unless something is awful, then I *might* take one 200mg Motrin, but that's it. [ more ]
CatySean, I had a small opening like that after my surgery because of a slipped stitch. It will heal from the inside out and eventually fill in with tissue. It takes about four months. I would not apply anything on it--just use a squirt bottle of water and gently spray it once in awhile, then pat the area dry. Caty [ more ]
LaciepThanks for the input everyone. Over the weekend things got quite a bit worse when it comes to pain, trying to empty my pouch and bleeding. I usually have pain and bleeding from the cuffitis, but I'm in a lot of pain now and am bleeding quite a bit more than I normally do. Is intense anal pain and bleeding normal with a prolapse, or is it just irritating my cuffitis even more? I'm assuming I'm having more trouble emptying because the bulge is over my rectum, which I'm assuming is the pouch... [ more ]
Jan DollarYes, prolapse is a structural issue and no medications will suffice. You either live with it, or have surgical repair. Sometimes it is as simple as tacking the pouch on the posterior abdominal wall. Again, defography should show where the defect lies. Jan [ more ]
Scott FI'm pretty sure the only way to fix a prolapse is surgical. Possible (tarnished) silver lining: It could be worth considering treating the cuffitis and prolapse with a single surgery (pouch advancement with hand-sewn anastamosis and mucosectomy). Such a procedure is best done by a very experienced surgeon. [ more ]
LHettiI'm sorry! My r/v fistula also started as just one, but then branched out. I had setons in for three years. In the end, I had three setons placed. Remicade is what I was on to help my cuffitis and to help close the fistulas. I agree- how can it close fully when the setons are in? Seemed to be working against the Remicade, but I just followed what they said was best. To me, the seton just creates a piercing hole that always seemed to drain. So frustrating! I hope the Cimzia works to close... [ more ]
Jan DollarI cannot answer about the effectiveness of Cimzia. However, I can tell you that the fistula will not heal closed while the seton is in place. The exception would be if this is a cutting seton ( the type that is tightened regularly and it cuts completely through the fistula, sphincter, and surrounding tissues. I don't that type used much in members here. Jan [ more ]
rachelravenLess complicated than you, but I have a perianal fistula, the most common (intrasphincteric). I had a seton for 19 months. Two months ago, I started Humira (I'm not "officially" Crohn's, but could be; my doc says he's seeing long-term UC pouch patients coming to him 20, 30 years in, and sort of getting "new" IBD type issues... I may fit that category, though you say banana, and I say... IBD is such an "umbrella" of diseases, almost doesn't matter, except that what we do works). Anywho, long... [ more ]
PluotIt's not unusual. Give it a few weeks and see if you go back to normal or see an improvement. Some people just don't agree with VSL and you might find that the increased output never goes away. For me it was like that -- VSL just doesn't work for me, so I take Florastor and Culturelle instead. Anyway you won't know until you give it some time and see [ more ]
LambiepieYou are a wonderful partner and your boyfriend is lucky to have you. He may not act like it because of the depression, but im sure he is appreciative of everything you do for him. Being in a j-poucher's shoes can be hard but it's hard on the partner, too. Chronic illness, along with always needing to be near a bathroom, is so isolating. Please don't think that you're forcing counseling on him. That's exactly what he needs. I would not have made it without my therapist. I, too, sat in a chair... [ more ]
Scott FHe does have medical options. If he's having unacceptable side effects to a medication, it's generally best to ask the doctor for an alternative treatment to try. There are a fair number of options to treat pouchitis, and and even larger number available to treat depression. They definitely don't have identical side effects, and it's usually possible to find an effective treatment that's quite tolerable. Whether you will be able to help motivate him to do his part is an open question. [ more ]
SB318I had my takedown at the end of February this year. Needed supplies were few. You may need some supplies for cleaning and dressing the surgical site. Calmoseptine or similar product is useful to prevent butt burn and Balneol is very good and soothing for cleansing. It took my system some time to adjust so be patient. A pro-biotic is a must. My doctor prescribed VSL#3 but it was too strong for me. It made me quite ill so I use something less potent. It works wonders for some, we're all... [ more ]
KOBHi, I had my takedown on 15 Oct 2014, so about 8 weeks ago. I do not profess to be an expert and everyone is different, but here's my experiences (Takedown started Wed at 2:30PM out of hospital 11:00AM Friday, total stay probably less than 2 days): 1. Some pain around the (sewn up) stoma site, not unbearable and goes reasonably quickly 2. Output initially is very watery 3. Use a zinc based cream to try and prevent butt burn 4. Sort of successful 5. Started taking metamucil 3-4 times a day 6. [ more ]
Jan DollarIf there are lab elevations suggestive of gallbladder issues and persistent symptoms, ultrasound is just a first step. Be a squeaky wheel and ask for other imaging. CT, MRI, HIDA scan etc.. Don't let them rely on one negative result. http://www.webmd.com/digestive...gallbladder-problems Jan [ more ]
jeaneThanks. I may really have to consider that. Did not realize the sprayer is that efficient. [ more ]
TE MarieYes, it cleans out better even if the anastomosis is very tight. IMO That's when you need it most.I had a hand held sprayer hooked to the stools water source. It was nice but nothing compares to a bidet and it didn't help water to get inside my j-pouch. I have a portable bidet, squirt bottle, that I take with when I'm gone over night. It doesn't compare to using my bidet. I know the bidet's helped with my cuffitis. I use the "turbo" spraying function for partial enema like cleaning without... [ more ]
jeaneDoes the biget just help clean out better even if the anastomosis is very tight? I try to use a squirt water bottle but when the fissures are really painful it is very hard to use. [ more ]
Jeff807I had my takedown 6/4/14; eight weeks later I went back to work, made three weeks then had a bad blockage and spent a week in the hospital. It’s been pretty good since then, only had one more blockage but handled it at home. I’ve been going to the bathroom between 13 to 20 times a day. The past week it’s been about 16 times (+ or -) a day. I take the opium tinc (15 drops), loperamide (2), and lomotil (2) every 6 hours. I get up 2 to 4 times a night and it seems I go more when I’m active like... [ more ]
MysticobraJan... I have an appointment with my surgeon in a week. Ya... My back and hips hurt so bad toward the end of the night I have to get up. My hips actually burn... It's an intense burning. So I move to my back and right at the tail bone the pain starts to get bad. So I get up and just hurt all over. Sometimes even the back of my hands hurt! Unreal. Some days are worse than others. I lost fifty pounds. Only gained 15 back. I couldn't afford to lose that much. I was only 175 to start... I am 145... [ more ]
rachelravenI used to be more predictable, but now I'm like Jan with my nearly 24 year old pouch... but I'd say I'm more like 6-12 hours now. [ more ]
Jan DollarSounds about right to me too. For me, anywhere from 2-12 hours is normal, depending on what I am eating. Jan [ more ]
CJBHeather, 4 hours seems about right to me. My breakfast comes out around lunchtime, and my lunch comes out at dinner time. My pouch is almost 19 years old and that's how its always been. C-Jay [ more ]
LambiepieTeddy, my surgeon at Mt. Sinai did ALL of my procedures laparoscopically. [ more ]
PluotI think you might be confused about what an "emergency" colectomy is. Surgery is considered emergent if you arrive in the ER and need surgery *now*, or if you are in-patient in the hospital and need surgery *now*. Any other surgery -- even if you schedule it two days in advance (which is what I did), is considered elective. If you need surgery that is truly emergent, it will almost always be performed by the surgeon on call and usually it will be open. I had one close call where they were... [ more ]
Teddy92Thank you all for your feedback! I really appreciate it. I am unfortunately doing a little worse (Remicade does not seem to be doing its job anymore) and so I am beginning more research on this. If anyone still reads this, I was wondering if you had any experience having an emergency colectomy and/or if in such a scenario you had enough time to request a specific doctor and/or get it done laparoscopically? [ more ]
JJASounds like my key symptoms: watery BMS, increased urgency & frequency, and nighttime leakage. I would also often experience a feeling of pressure in the rectal area. [ more ]
Jan DollarI agree with Scott. If this is a virus, it will run its course within a week (or at least be improving). Pouchitis will not improve without treatment, so you will know soon. Jan [ more ]
Scott FIt certainly could be pouchitis, or it could be a more ordinary intestinal bug. If it gets better by itself it isn't likely pouchitis. [ more ]
TE MarieI sent my Internist a link to Mayo's information about Gastroparesis, like your link here. I hope her nurse passed it to her to read. Thanks for confirming my suspicion about the problem. I've gone off of my GERD medication to see if I still need it several times and I think this nausea is different, but who knows? I'm going to schedule an appointment with one of my GIs. [ more ]
Jan DollarSeems more upper GI than pouch related to me. Since you already know you have GERD, I'd look into that first. Just because your meds have not changed, your GERD may have. Especially with it related to the size of your meal, it seems upper GI, like your stomach is not emptying properly. This is common with GERD. Diabetes too, but I know you are not diabetic. Plain abdominal films would not show it. Problem is that the meds for gastric motility (Reglan) aren't good long term because of side... [ more ]
Scott FUrinary tract infections are fairly common after surgery. You almost certainly had a Foley catheter placed, and that can introduce bacteria where they don't belong. It likely no big deal in the long run, though uncomfortable right now. I have no idea about "skin folds." [ more ]
MarkGregoryI had to use a catheter almost every time for 20 plus years, just to be able to more completely empty out. Enemas did help me, but in the end, I had to use the catheter trying to get out as much as possible, and decrease the number a trips to the bathroom. [ more ]
TE MarieMy j-pouch is "large" per my imaging etc. It definitely is against my tailbone. I've seen it in my X-Ray with contrast imaging while discussing it with my GI. It affects my lower back pain along with arthritis. [ more ]
Jan DollarIt is in the back, behind your bladder and next to the posterior pelvic wall. It is low, in the pelvis, next yo the sacrum. So, yeah, if you have things going on with your pouch, you may get very low back pain, such as tailbone. But, unless you have other symptoms like fever, pouchitis symptoms, etc., it is more likely to be muscle strain. Jan [ more ]
Scott FMore toward the back, though low enough that it's as much in the pelvis as abdomen. There are some pouch problems that can cause tailbone pain. Are you asking if your lifting may have caused a pouch problem? It can sure cause back problems without the pouch involved at all. [ more ]
Scott FIt turns out that a small amount of sugar is something of a "magic ingredient" in rehydrating solutions. It dramatically increases water absorption, and saves many lives in cholera outbreaks. Cordials, not so much. Just follow the recipe. [ more ]
JaypeaIt looks to me like you are consuming a lot of sugar. Cordial is basically a simple syrup with fruit flavouring. Tea is a diuretic and fizzy pop is loaded with sugar which only pulls water into the bowel contributing to dehydration. There are lots of recipes on line for oral rehydrating fluids that don't contain sugar. [ more ]
Former MemberThanks for all the positive replies. I totally understand the differences now. I wasn't aware of the effects of fruit juices and fizzy drinks, I believed as long as I was consuming fluids, it was good. I was aware that our system can be flooded by too much fluid which can cause equally severe problems. I thank everyone for taking the time to thoroughly explain their replies. [ 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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