Jan DollarNot likely. The secretions in your pouch are way different than the secretions in your nasal sinuses. Rinsing your pouch with tap water actually removes irritants because it facilitates complete emptying. If you are just talking about rinsing your butt off with a shower spray after bowel movements, it is a different thing. That said, plain water is fine, no salt is needed. However, soap is not so great and THAT can be an irritant. Jan [ more ]
Jan DollarThere are a number of folks with ankylosing spondylitis and related disorders that see improvement by drastic elimination of starches. Jan [ more ]
drone3This may be met with scepticism, but i can honestly say for my debilitating aggressive sacroilitis the only thing that makes it go away is to avoid all starch. I had some success with curcumin (life extension brand) and feet up the wall yoga pose but it was all temporary the only thing that made it go away was the no starch diet. You can learn more about it here http://www.kickas.org/londondiet.shtml [ more ]
dgtracyironic to have seen this thread revived, i had a doc appt with my Rheumy the other day, i was told this was all Enteropathic Artheritis around last year sometime, been seeing the rheumy for a bit, shes talking about putting me on cimzia. last week i went to get out of bed and just fell, i tried to walk a bit more to see what happened and soon as i took another step, down i went. it took a good few hours for the pain to loosen and i could walk better and better, but i have been taking Tumeric... [ more ]
MysticobraI agree. It is a very personal decision. I knew deep down it was not gonna work. It was just getting worse. I applaud you for plugging along. I just couldn't do that for any longer and it was not a spur of the moment decision. Nobody... Wants an appliance. But as I move on with it I find its no big deal. And that even surprises me! The thoughts going through my head beforehand. Oh man..... But now that it's done. I am better off. Just a different way as is the pouch... Of doing it. Richard. [ more ]
BillVContinuing with a procedure when things don’t turn out the way they were *supposed* to is a very personal and individualized decision. I was able make adaptations to my lifestyle to accommodate bathroom use and BB pain. During those 30 years, I held a full-time job, enjoyed alpine skiing in the Rockies and Sierras, entered equestrian competitions with my horse, traveled internationally and was active in the romance scene. While others have found satisfaction and improved their quality of... [ more ]
Jan DollarI am surprised you can find a surgeon that still does a w-pouch. Early reports showed improved function, but in the long term they can become problematic. They can become overstretched and difficult to empty, and are more likely to need revision surgery or intubation to empty. There have been a few members here who had w-pouches. Over time, their pouches became dysfunctional and they required surgery. I suppose those who did not have issues did not register here. Another issue is that they... [ more ]
deweyjoh boy I'm sorry to hear of the rough road. NG tubes or the hose in the nose is brutal enough as it is. given the additional data that you just shared that she's passing stool it sounds like their suspicion of cDiff would be accurate. I found that the hose in the nose varied from dark bilious type extract to a diluted version of same. she's at an excellent hospital so hopefully they get her well situated and on the road to recovery soon. best wishes and hugs to you, mom and dad. [ more ]
Leah2noelle4During the time of your elius, was the output from the NG tube really dark? We are waiting on the x rays to come back, but her output has been dark brown and thicker today. She hasn't eaten anything since Saturday. She is passing stool about 13 times a day as well. I just can't imagine what's left in there!! Any ideas? Leah [ more ]
Jan DollarBoy, your mom has really had a lot to deal with over the past year. No doubt her resistance was low after this last set of surgeries. If this is a C. diff infection, it is likely a hospital acquired strain and they will get right on it with powerful antibiotics. Most likely it will be vancomycin, or maybe a combination. As for the obstruction, Scott is probably right that it is most likely an ileus. That just takes time. Luckily for her, she has a great daughter to be by her side. Liver... [ more ]
Sarah PhillipsThanks for the replies! Thankfully a day of liquids (especially hot tea and coffee) did the trick. But it was scary enough that I will be much more careful in the future! I'm excited about the white grape juice trick...thanks! [ more ]
CeeeeCeeeeI always keep a bottle of white grape juice in the refrigerator. One blockage/obstruction was enough for me! [ more ]
hattieWhite grape juice was my best friend when I had 2 blockages with my Jpouch. I am told that the white grape juice is more effective than the purple one for some reason. [ more ]
Jan DollarSure, a vaccine would be preferable to immune modulators or biologics, because they are targeted, except for Entyvio, a biologic which targets the gut. That said, we don't have it yet, so it it a moot point. Whether or not it seems too dangerous to be on immune modulators and biologics depends on the benefit vs. risk ratio. For me, my quality of life is vastly improved by them, so the benefit outweighs the risk. I've been on biologics for over a decade with only improved health. Jan [ more ]
Scott FRusty, allergy shots have none of the risks of broad immune suppression, because they are specific to the particular substances causing the immune response. My point is that you'd want to induce tolerance to a specific substance if and when the immune response to that substance is causing harm. Immunosuppressants aren't specific at all. They carry risks and side effects, though they are often better than a disease out of control. [ more ]
rustyskyline"you'd want to reduce the immune response (induce "tolerance"), more like allergy shots than vaccines." So, you'd be better off with a type of immuno-suppressant? Like the biologics my GI keeps suggesting. It just seems so dangerous to purposely suppress the immune system. An intentionally acquired immune deficiency syndrome. [ more ]
TammWellThank you for your replies. I have been a FAP patient since 1999 when my colon was removed. I started going to the Cleveland Clinic in 2007. They have saved my life. Continue to be monitored there. My duodenum was removed in 2007. Now they are seeing some high grade dysplasia in my stomach. So stomach removal has been discussed but not needed at this time. The surgeon has told me that he does not know what my quality of life would be. They have not removed the stomach on anyone who has no... [ more ]
Chuckusand I am somewhat of an FAP/GS guru............feel free to ask. My quality of life is excellent! [ more ]
TE MarieIt sounds like you need to see your GI or surgeon. When my stricture problems began it felt like what you are describing. I have a bidet and found that shooting some water up like a mini enema was what I needed to do. It progressed to needing these mini enemas 5+ times a day. When I had to be away from home I had to give myself enemas where I was staying. I think my situation was hopefully worse than yours. I was dilated during several pouchoscopies and then under anesthesia before my pouch... [ more ]
Scott FDilation can help with strictures, but strictures aren't the only things that can make it hard to empty a pouch. I think you need a proper pouch exam by a knowledgeable gastroenterologist, or perhaps your pouch surgeon. [ more ]
TE MarieYou are not alone. I have been suffering with chronic pain every since my surgeries over 5 years ago. I need narcotics daily. I went to the ER the first time in my life and was diagnosed with a UTI. It was 3 months after my take down. I was embarrassed because I was sure something much worse was going on. UC pain was different. There are many of us on here that need to take narcotics. I am never pain free. Besides my j-pouch related pain I have other chronic illnesses and syndromes. My last... [ more ]
CTBarristerI have survived with inflammatory bowel disease since I was 9 years old and I am now 52 years old. I have had 4 bowel surgeries. I have been in a high stress profession (trial attorney) for 24 years and still going strong. Last year, I dealt with thyroid cancer which had just started to metastasize into my lymph nodes, and more recently I have been dealing with the pain of a pinched nerve in my neck. I turn fear and stress into positive energy and work ethic. I think it's just my... [ more ]
skn69Hi Lisat I understand perfectly...maybe it is because I was born this way, maybe because I have never known 'normal' or 'healthy' but everytime that something is off, strange or hurts I have a horrible feeling that it is yet another disease or body part about to break down. I am lucky that I do not have an anxiety disorder. (it is a miracle)...don't know why, maybe because I was not allowed to give in, cry or get depressed. I was brought up in a sort of bootcamp atmosphere when it came to my... [ more ]
CeeeeCeeeeChase.....you sound like a very, very bright 14 year old! Consider what you're going through as a journey. You might even want to keep a journal so you can look back at all of this when it is well behind you. You are going to learn so much about your body and its new "plumbing". Much of everything you'll experience is brought about by trial and error on your part. What doesn't seem to work for you one day, one week or one month may turn right around and be the answer you were looking for! I... [ more ]
NewJersey64Thank you all for your encouraging comments, I can't wait to lose this bag,at almost 52 years old, I love kick box and play multi sports several times a week the South Texas weather is beautiful,from biking to swimming ,I hate for anything to hold me back,even my own body,being an Aries,it's hard for me to not push myself. Again everyone take care and keep the great advise coming!. [ more ]
king of the throneChase, Good luck to you buddy I am 37 and experiencing this and having a hard time with it. Being a teenager is hard enough without having something this thrown at you. The recovery from the second surgery is probably a little bit tougher than the first. This surgery is a lot more invasive than the first. It will probably be a little bit easier on you because you do know what to expect. For me the worst part of it was passing the mucosis I was running to the bathroom 15or so times a day. My... [ more ]
Scott FA healthy, well-functioning pouch will tend to require 4-6 bathroom trips daily. Some cases of pouchitis are simply cleared up with 10-14 days of Cipro or Flagyl. Other cases (like mine) turn out to require continuous treatment with antibiotics, preferably rotating among a few different antibiotics every 2-3 weeks, if you can find a few antibiotics that are effective for you. [ more ]
Gr8MamacitaI had my takedown 3 years ago Gavin had my colon removed, ,& go to the bathroom 15-20xday. Recently I had a sigmoidiscopy and the Dr said I had a bit of piuchitis. I was on Flagyl for 2 weeks and felt like a million dollars . My frequency was cut back and I could finally sleep more than 2 hr ntervals at night. Even the butt burn and pain was reduced. BUT..within 24 hrs of finishing the flagyl, the frequency is back, & having some butt burn. I asked the Dr if he could prescribe an... [ more ]
jeaneI average about 6-8 times a day (without active pouchtis) and often 8-12 times a day and 2-4 times a night if pouchitis is flaring. It is very annoying I know. I also suffer from relatively chronic pouchitis I keep in check with occasional doses of cipro. Hope the new meds help you. [ more ]
CeeeeCeeeeThose hospital issue bed pads are a godsend. I mean the ones made of padded fabric with a waterproof side. Before leaving the hospital I found out where the hospital got them. I went to the source, which was a mega laundry, and I purchased about 6 of them. It is thirteen years later and I still use them. They wash and dry beautifully and maintain their shape. They must have sold them to me at cost. They weren't very expensive at all! Best wishes! [ more ]
JeffsmomAsk for all the pain meds you can get and then some! Breath is the best advise and sleep. Make a pot of chicken soup. The Barefoot Contessa has a great one. I even bought a 24 quart pot to make it. Let it cook down and it's rich and tasty. My son loves it! Go food shopping now! Take a yoga class and relax. Worrying is not going to make it any better. Gook luck! dianne [ more ]
MysticobraHahaha... I know what you meant Sharon. I borrowed all I knew they were going to throw away anyways. No use wasting the stuff. If there are pads in the room when you are fixing to leave and you don't take them they will just throw them away. That's a waste. You give good advice. We all appreciate it. Richard. [ more ]
skn69Sounds similar to the French system. Same surgeons, different prices, shorter wait times, better 'hotel' service. Good luck Sharon [ more ]
TrojanYour GP should be able to refer you for private healthcare, the same as an NHS referral. In some cases the NHS surgeon will be the same person as the private surgeon, they just split their time between the two and you get quicker appointment times if you pay.Your GP may know the best local surgeons, either way, so it's a good place to start if you struggling with the self-referral route. [ more ]
Anthony GambleBest way to get surgery in my opinion...Find a surgeon you like, see if they do private clinics, make an appointment via their private secretary (appointments normally cost £200). Once you see the surgeon privately you are normally fast tracked. Hope this helps. [ more ]
CTBarristerI think you mean "systemic yeast infection", but in any event, I am aware of a case where a pulmonary fungal infection was contracted by a person who was exposed to breathing mold spores in the aftermath of water damage in a condominium. You don't need to be immunosuppressed to get one of these. All you need to do is be exposed to and breathe mold spores. But it's rare in any person. The people who are most at risk among those of us on the board are those taking immuno suppressant drugs and... [ more ]
Jan DollarNever has been an issue for me. I am also leary of this diagnosis. While fungal gut infections do occur, it is not very common. If you've been on a lot of antibiotics, it is more likely. The notion of systemic yeast infection is sort of a fad thing. Jan [ more ]
Scott FMost of us don't have "low immune systems." IBD is, if anything, an overactive immune system. I'm also not at all sure that most of what gets called "systemic yeast overgrowth" is real. Rosie, how did you get this diagnosis? [ more ]
Jan DollarI took a look at your profile and I see that you have ongoing pouchitis since 2007. So, yeah, you could be having nutritional issues. I hope you have been having regular screening labs: CBC, blood sugar, HbA1c, liver enzymes, renal function, thyroid levels, B12, folic acid, vitamin D levels. While pouchitis can interfere with absorbtion of a number of nutrients, age and other autoimmune diseases can also be a factor. It can also be side effects from your pouchitis treatments. Be sure to rule... [ more ]
LambiepieDr. B, just a thought but, in addition to Sharon's helpful suggestions, you may want to have your iron levels checked. The body starts to get out of whack as they drop. Mine did with, among others, the symptoms you described. [ more ]
Mr brianSame age as me and 30 years. Wow that's encouraging. Ya definitely a large bathroom facility [ more ]
Angie WilsonIf we had that reunion (or have it) in person - that hotel better be well stocked with great plumbing and tons of TP! It's a great idea. I cannot believe I am in the 30 year plus j pouch crowd. I am 53 - how the hell this happened is beyond me! Ya gotta laugh. [ more ]
FAPLiferI have had the same issues. I was always having a uti, never even really knew since it never went away and just became normal, bleeding, pain, never felt empty, I am always in the bathroom for at least 10-20 mins, and back again if I wasn't done. My family has grown to know where to look for me first. I have the extra tissue that protrudes when I push to empty my pouch, but never really thought much of it, the doctors are always going up there with scopes so figured must be normal. I'm not... [ more ]
LjzI am seeing my surgeon in 3 weeks ( was supposed to go this week but referral was delayed) for what my gastro thinks is a prolapsed pouch. I have the same frustrating pouch emptying experiences as you, and can see big hunk of tissue protrude out anus after pushing to empty completely. However, I do not have any of other issues you have, and little to no pain. Good luck with all your tests, and I hope they find something to relieve you of your pain. I expect I will have that test down the... [ more ]
Jan DollarI don't have your problems, but I think what you mention last is an upper GI series and small bowel follow through. This is also sometimes referred to as a barium swallow. Basically, you drink a barium milkshake and they do serial x-rays as the barium moves through your system. As far as the UTI goes, I would suspect you may just need a different antibiotic. Jan [ more ]
Jan DollarIf Dr. Shen can't sort this out, then there isn't much else to do. Jan [ more ]
RHFBill, Jan and SKN: Called Cleveland Clinic, got an appointment for exam and evaluation with Dr. Shen. We are hoping that some intervention will provide him with some pain-free days. He certainly needs them. Thanks for the encouragement and common-sense advice. [ more ]
BodoniI have a K-pouch. I had a pilonidal cyst years ago. It was right near the tip of my tail-bone. Now, I think I am getting another cyst. It is a bit to the left of my tailbone in my buttock. Feels like a little hard lump. It is not 'ripe' - nothing is coming out. Should I just leave it alone? It only feels a little sore if I press on it. Thanks. [ more ]
JHendrixDeathstalker, has anything developed with this? I also have tailbone discomfort along with anal pressure (feeling like something is pressing down from the inside). I've been diagnosed with a Bartholian Abscess (female) and am wondering if there is more to this. [ more ]
AllyKatMy son gets flare ups every so often. Hope u feel better. [ more ]
Jan DollarYou can do tap water enema rinses to help evacuate. Not ideal, but should do the job. I do better with looser output, so I don't limit fruits and vegetables. Jan [ more ]
pouchingtonI'm definitely getting it past the stricture daily but it does seem I need to have a precise consistency that is impossible to duplicate every day. Too thin and not enough bulk to empty and too thick and I never ever feel empty. I have been dxd with pelvic floor issues but multiple biofeedback physical therapy sessions have not been successful. I even went to the top therapists at Cleveland clinic Ohio. Any other options? [ more ]
SpookyLaurie, this actually sounds similar to some of the symptoms I have had with partial obstructions - cramping, unusual movement, gurgling and sometimes the sensation of a "bulge" if I press on the area. If it persists, you may not want to wait the full week; perhaps give your GI's office a call and see if they can fit you in earlier. In the meantime, if you develop fever and/or vomiting or if you are passing no stool at all, you will need to head to the ER. [ more ]
SpookyIt depends on your tastes, but any of the following are go tos for me: applesauce (unsweetened) a small slice of cheese or a cheese stick, rice crackers and hummus, a few peanut butter crackers, greek yogurt, light cottage cheese, etc. If you are trying to avoid running to the bathroom, be wary of those "low fat snacks" that are easy to grab, like pre-packaged cereal bars or the so-called breakfast bar. You might think you're doing yourself a favour since they are low in calories, but they... [ more ]
Former MemberCheese sticks might work. They don't bug me much and I'm lactose intolerant [ more ]
Scott FMany of us have used psyllium and done well with it. I've used it every day since I got home from the hospital about 14 years ago. Some people get gassy from it and prefer a different soluble fiber solution (e.g. Citrucel or Benefiber). [ more ]
Jan DollarSounds to me like you need a prescription oral antifungal to help get back on track. The supplements may help with the symptoms, but if you have a fungal pouchitis, it should be treated aggressively. Supplements are intended for maintenance, not cures. I recommend calling your doctor before things get too serious. Jan [ more ]
UjohnjCNot sure jan believe yeast infection is inside pouch that's the way I understood it I've been taking supplements gi micron-x &hcl pro-zyme & beta tcp , colon plus,kapparest,super digest-zyme to help with that and burn and other things [ more ]
Jan DollarI am sort of confused. If your doctor told you that you had a yeast infection, it does not make sense that he would recommend antibiotics (unless you are leaving something out, such as you have pouchitis too and the yeast infection was just on the skin). If you have a yeast pouchitis, he would have prescribed an antifungal, like Diflucan. If you needed antibiotics then, you probably need them more now. Pouchitis doe not just go away. Jan [ more ]
SpecksHi! I'm new to all of this. I recently had my ileostomy takedown (Jan. 26, 2016), as the third surgery in my 3 surgery process. I feel like I had persistent problems with my "rectal area" along the way. After the first surgery, I still had sxs of my UC, which I attributed to the fact that my rectum was still in. After my second surgery (removal of rectum and creation of J-pouch), I continued with sxs, but mainly at night. I had a lot of "rectal" pressure and spasms with urgency that recurred... [ more ]
jeaneMaybe I am just not clear on the pouch advancement surgery. When they advance the pouch do they move it to the very end of the anal canal and then sew it? If so, how can there be anything left in the anal transitional zone or cuff(if removed) where inflammation can occur? I can see inflammation still occurring in very bottom of the pouch after they disconnect it and drop it down and then sew it, but I am still confused on where the inflammation occurs after advancement. Yes, I do have many... [ more ]
TE MarieI've heard even with pouch advancement the cells can come back. It was likened to endometriosis in a way. It's hard gathering all the sand up off of the beach and if you leave a few cells on the beach they can multiply and eventually come back. Is that a good way of describing it AllyCat? I'm sorry you are still dealing with this. I'm still using Canasa as my main form of treatment but wasn't told to watch out for Anucort thinning the skin Jeanne. I think you have about 6 different things... [ more ]
Deanna6Jen, To even get therapy covered for that long?!?! I think they felt they were at a loss and end of the line. I have exercises to do at home but insurance won't continue to pay without showing progress...already pay out of.pocket for a chiropractor visit... So your problem too was only evacuation?! Which sucks. Makes.you want.to eat " easy" things as youre already in the bathroom allll day long anyway... [ more ]
JenJenUgh, been where you are and am hopeful for you -- but it sounds like you have exhausted this doc as a resource. I've done some of the same routine you mention, had difficulty evacuating followed by prolapse diagnosis (in addition to pouchitis and cuffitis) followed by many meds and physical therapy. Only I've done it for five years now. I swore I'd do anything to stay out of the hospital and home with my husband and kids, but at this point I am so bad off I guess I'm not really "home." I... [ more ]
Angie WilsonThanks for all of the information - my husband did this too - about 15 years ago - loves it. I think about doing it now - my eyes got too dry for contacs...I think I'll just wear the glasses. Looking back, if I were in my 20s/30s, I would do it. I always figured I'd be the one person who ended up with a bad result! ha! And, back in those days, contacs did not bother me. Not the worse thing in the world to wear specs. Great thread with lots of good information -thanks you people! [ more ]
SpookyNo, that is the other thing to consider. Laser is not always permanent, though again it depends on the type of procedure. My uncle had his done about 12 or 15 years ago and now requires glasses again. Laser corrects your vision based on the shape of your lens at the time the procedure was done. Over time, the shape of your eye may change again, just as you may require different prescriptions for glasses as you age. However that being said, my understanding is that the surgery gives you far... [ more ]
labloverI thought it was worth it at the time. For me and eventually my husband, we had to go back to glasses... [ more ]
Angie WilsonGood luck to you all. my experience was take down part was a breeze compared to colon removal part - but everyone is different. It takes patience, etc. to get used to pouch - but I sure was glad to get rid of the bag at that time - I was 23 - am now 53. You guys can do this!! Cheering you on! [ more ]
kevhI have my takedown surgery thurs 2/25 as well. I have the second of a two part . I am nervous about this next step as well... good luck to you! [ more ]
Sharon WI am having my jpouch surgery this Thursday. I did the colectomy in July 2015. My Surgeon does it in three steps. So I will still have ileostomy until 3rd surgery. What should recovery be like and has anyone else done it in 3 steps? [ more ]
JLHi'm on the salt wagon also!! lucky me i don't have high blood pressure, if anything it's too low. prior to my colon removal i would barely touch salt. might this salt phenomenon have anything to do with our small intestines developing a different osmotic process? extracting fluids is one of the colon's functions and we simply have a different process now. i also drink more fluids and had terrible SIBO--part of which is caused by osmosis--with the j pouch. just a thought.... janet [ more ]
ChayesThanks again for the comments. Good to know I'm not alone. J9pouch, I do sea salt the and way!!! My husband tried to get me to get some pink Himalayan salt this weeknd said it would be better for me, I'll have to try it out. [ more ]
CTBarristerMy salt consumption is off the charts and horrifies onlookers. When I had thyroid cancer last year for 24 days I went on a low iodine diet preparatory to taking radioactive iodine. During this period of time I realized there is a sharp and unpleasant taste difference between non-iodized and iodized salt, the former being just too strong and the latter being more appropriate and capable of being used in greater quantities. Its all good and prevents depletion of sodium levels. Electroloyte... [ more ]
Deanna6I haven't been able to take any additional fiber because of the severe gas pains and forcefulness of the bm's causing pain. i use a lot of essential oils for various reasons but young living carries a peppermint essential oil and also capsules that you would put it into to ingest. Peppermint is calming for my digestive tract and I even just rub it on my tummy (a couple drops mixed with a carrier oils Cush as coconut oil) for relief. [ more ]
TannerAfter 32 years of having a jpouch. I have had it all. VSL3 is a big help bit costs 46 dollars for fifty at Costco in Calif. Also. A hot water bottle and laying almost upside down on a couch along with massage helps cramping and gas and sometimes It becomes a blockage and all of this works most of the time so you don't go to the ER ALL the time. Hope some of these tips help. Good luck, Tannet [ more ]
skn69Thanks Jan They had him on very high doses of anticoagulants for 10 days and then finally took him to surgery...now he is still on an NG tube and suffering but like you said, he survived (5.5hr surgery). Keeping fingers crossed Sharon [ more ]
Jan DollarThe mesentery is the vascular system of the gut. An embolism can be a blood clot, a chunk of plaque, or a foreign body. If there is an arterial embolism to the mesentery, it is a life threatening event, necessitating emergency resection of the affected portion of intestine. The symptoms start out the same as a severe obstruction. An embolism in a vein causes less severe symptoms and less damage, but surgery is still likely necessary. The fact that he survived the event and surgery is great... [ more ]
deweyjFlagyl sucks. but it works wonders for me. Xifaxan - aka Rifaximin is a relatively new alternative abx and doesn't carry with it the admonition v alcohol. Tinidazole aka super flagyl is also another possible route. I personally have never responded to probiotics but some people do. maybe I also haven't flooded my system with enough of them. [ more ]
ElmerFuddThere are others who cycle through 3-4 different antibiotics. And for me, all antibiotics seem to have a positive effect on my pouch - not just Cipro or Flagyl. Doxycycline, Amoxicillin, Omnicef, etc. - I've been on then for one thing or another and my output decreases (since 50%-80% of our poop is bacteria), and I seem to then "reset" to decent function for several months. So while you may not be able to get away from antibiotics altogether, maybe you can use more than just the two? Steve [ more ]
Scott FGetting off antibiotics hasn't worked for me, though I've tried a few times. Your best shot would probably look something like the following while you're off antibiotics (and perhaps starting a day or three ahead of stropping antibiotics): 1) A maximum VSL #3 dose, at least during your "no antibiotics" trial. That's 3.6 *trillion* bacteria (4 packets of DS) per day. That's the dose I take. 2) Completely eliminate carbs, at least while you're testing whether you can make "no antibiotics"... [ more ]
cherylscuderaJamie Wehr, how else can I contact you? Cheryl Scudera? Are you feeling any better? I am on so many pain meds for so long feel like I am in withdrawal and crawling out of skin. But pain and anxiety too much without them. Sending hugs. [ more ]
JHendrixI think I could manage to just live with it if it didn't have such an impact on intimacy. Today I hit brick walls with my Salofalk (Canasa) suppository idea. The surgeon's office is closed until next week. My GP is on holidays and the physician at a walk in clinic denied me. He thought it was too strong a medicine to prescribe when he is not in the loop with my whole history, etc. I am disappointed but I can appreciate his decision - I respect it. I use psyllium regularly and it certainly... [ more ]
CJBAdd me to your club. I've had the fistula for close to 9 years now I think. It is a true recto-vaginal fistula. I have never had a seton for it. And I never attempted a repair for fear of ending up with a different problem. I don't have true stool leaking from my vagina either, unless I am holding it for a long period. I was told the yellowish discharge is "small bowel output". So what I figure to be the juices flowing in the small intestine, but not actual stool. It certainly doesn't smell... [ more ]
n/aMy drainage is mostly yellow mucous as well, which, like yours, waxes and wanes in intensity. I do detect a bit of stool from time-to-time, mostly when I'm "holding it" and/or have gas, but this is fairly rare. And, I have cuffitis, which is treated with canasa and anusol suppositories. Have had my fistula (which actually exits just outside the vag. opening) for 5+ years now, with a seton most of those years. The seton is working fine and causes few problems. I do believe that the Canasa... [ more ]
DJ HI can't handle Metamucil (gives me gas) but I have some success with the sugar free Citrucel . I can somewhat control the consistency of my stool with it. I mix it with water. [ more ]
dgloria5Sprinkle a teasp. or so on your cereal or yogurt. [ more ]
Scott FMetamucil and Konsyl are available in single dose packets, very helpful for travel. [ more ]
KushamiTE Marie, thank you for sharing your experience. My goodness, you have had a tough time. It sounds like you currently have a team you can trust with your surgeon at the Mayo Clinic and your GI. I have been fortunate in that if I do have adhesions, they haven't caused me any major pain or problems (apart from the occasional agonising jab when I sneeze or roll over oddly in bed). I'm in Australia and am having my operation through the public system, so I am not sure whether I can "shop... [ more ]
TE MarieI think you might need to find a different doctor. I had all open surgeries, hysterectomy related 20 years ago then 5 years ago had 3 surgeries in 8 months. They were my colonectomy, take down and incisional hernia. 5.5 months ago I had surgery to divert from using my j-pouch to a permanent ileostomy. I was hoping that I wouldn't need the j-pouch removed. I am now getting it removed next month My current surgeon is at the Mayo Clinic and she went in and laproscopically spent 3 hours lysing,... [ more ]
KushamiThanks for your input, Scott. I will see the surgeon on March 10 and ask him all about it. Somehow I feel that I can face having my pouch diverted to an ileostomy, but can't cope with the idea of having my abdomen opened up again. Given that I have had an ileostomy before (so won't need as long to get used to it as a newbie) I imagine that I could get home much sooner if the adhesiolysis could be done laparoscopically. [ more ]
Jan DollarI don't think so, unless you are slowing the gut too much. I was talking about pouch function, and what can be done during those early months/years during adaptation. Certainly, if you slow the gut or your transit time is so slow that you are having less than 3-4 bowel movements per day, you may be dealing with fecal stasis. But, having stool moving through should not cause pouchitis. Jan [ more ]
Pouchomarxbut wouldn't small serving cause more chances of food sitting in the pouch and cause pouchitis? I would think a larger meal and then poop it out at once to decrease chance of food sitting in the pouch longer? [ more ]
Jan DollarJust like you said, it is for improvement of BMs. But, it is not just small servings, but frequent small servings, as you want to maintain your nutrition. In addition to helping with function early on, it also helps with nutrient absorption. In the first year or so while your gut is adapting to life without a colon, it is easier to overload your system with meals that are too large. This can increase diarrhea. The size of a small serving is subjective. You'll find this to be a common... [ more ]
CeeeeCeeeeYears ago I was told those rumbling sounds are called "burbulance". I use the term even if it may be fabricated. [ more ]
KushamiHi Hayley, Mine would grumble loudly after eating - I no longer get "hungry rumbling". Occasionally when I worked in an office people would be a bit surprised that it was making noises after we had all had lunch! And I seem to recall that someone once wondered whether it was distant thunder ... I usually laugh it off with "Oh, that's just my crazy stomach". Cheers, Sarah [ more ]
CdubHi Hayley I get loud grumblings a lot, and have just got used to it over time. I think in my case the cause is different - I'm not able to pass wind, so the rumbling is from wind in my small bowel, but the sound is the same! Like you say, it's not distressing (for me anyway), and I tend to make a joke about it. People tend to assume it's my stomach rumbling. I'd rather than that any of the symptoms of UC again! [ more ]
TerriGThanks Scott. I know I'm not suppose to take Ibuprofen, has already caused bleeding & now very anemic so I try to limit but I don't know what else to do. I live in Reno NV & its hard to find a smart Dr. I think my pm doc thinks I'm out for pain meds but I only take when needed. I hate them. [ more ]
Scott FA rheumatologist won't help much if it's typical sciatica. Give the PT a chance, and if that doesn't help, consider a different (smarter?) pain management doc. A more optimistic approach would be to see a physiatrist, who might guide the PT in a more sophisticated way. Please be careful with the ibuprofen, which can lead to a nasty case of pouchitis. [ more ]
TerriGThese posting are old but I'm having similar things happening. Thought from 2 jolts in a car accident. Started with pain in my right butt cheek & would travel down my leg. Now it it also lower back & the left side pain & down the back of my leg to my knee. Went to chiropractor made it worse. Went to pain mgmt have had 4 injections. Didn't help. Now on pain meds & lots of ibuprofen. When I sit I feel like it's pushing my tell bone up. They say siatic nerve. Start physical... [ more ]
Rebe0505scott did not find your reply under help? but just wondering if diet could be culprit..have changed my diet from dcd which no longer was doing much..still need my antibiotics again so i just went gluten free eat rice now (so good!!) and have added other things i restricted myself from which probably had some more sugar...eating anything processed like form of ice cream will add ingredient you may not want..wondering if diet change cause for my leakage? truthfully feel so much better since... [ more ]
Betty BooReally...so maybe psyllium husk would be good, I used to use this regularly but stopped when I was getting blockages. Thanks so much for all your advice I really appreciate it. [ more ]
Jan DollarYou may want to use some soluble fiber to thicken, as loose stool can lead to straining and irritation, just as constipation does. The fiber also absorbs the bile acids, so less caustic effect. Hemorrhoids can be extremely painful, as there are a great deal of sensory nerves in the anal canal. Jan [ more ]
Betty BooI never imagined hemorrhoids could be this painful!!! My stool consistency is pretty loose to say the least as I'm not taking anything to thicken it or slow it down at the moment. The trouble is straining as I have a full feeling in the anus all the time and it feels irritated and painful as well. Weight is not an issue as I am quiet slim now. So if it is thrombosed hemorrhoids are they easily sorted out??? I am picking up a prescription for another ointment tomorrow as the canesten hasn't... [ 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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