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J-Pouch ForumsPouchitis
Can antibiotics cause pouchitis?
SpookySpooky
TrudieC My bouts of pouchitis seem to be precluded by sinusitis or a sinus infection even if I don't go on antibiotics. [ more ]
Rocket I don't know if antibiotics can cause pouchitis, but I do know that for me, when ever I take antibiotics or a pain killer (like I needed after I had a root canal last year), it increase by trips to the bathroom. I get the runs, more cramps, butt burn and so forth. Then of course when you are so sick, you need plenty of bed rest which you cannot get because you are in the bathroom all the time. Last year, I decided not to take the pain killer for the root canal. My mouth was in excuriating... [ more ]
Former Member hi was reading through this thread as on June 6 I had a root canal. they put me on anti botic, i was having terrible cramping, looser stool than usual. I am now in Korea for business. NOt a happy camper. my butt is killing me even with calmospetine. liquid stools...not sure if I can get a probiotic over here. it is 4:30 in the morning over here. I'm here for another week. I kept hoping things would get better. I have immodium with me. hasn't helped but maybe will try again...just... [ more ]
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J-Pouch ForumsPouchitis
How would I know
Mema 1Mema 1
Mema 1 Thank you both. Believe it or not, I don't remember if it began when I started taking the fiber tablets, but I'll stop taking them for awhile to see if it stops. I felt fine today, actually I only went once or twice....but during the night, it's another story. I always have urgency so I can't tell by that. [ more ]
CTBarrister Frequency and urgency are usually the key symptoms. Eventually if untreated you will feel crampiness and the BMs will get increasingly explosive. Once antibiotics are taken, at least for me, there was almost immediate cessation of said symptoms within a day or two. [ more ]
Jan Dollar The primary symptoms of pouchitis is increased frequency with urgency. Other symptoms like gas, general malaise, fever, bleeding, pain, etc., are highly variable. If your symptoms started when you began using fiber supplements, it makes sense to stop them to see if your symptoms resolve. I could not take psyllium fiber supplements because of the increased gas they caused. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro HAPPILY change my life!! Long-Term use??
TheresaSTheresaS
CTBarrister I have rotated antibiotics for 22 years, cipro, flagyl, tinidazole, xifaxin, and augmentin being the main ones I have used depending on insurance coverages. Rotate every 1-2 weeks. If you do not rotate you will see the antibiotics lose effectiveness and, especially in the case of cipro, you are prone to yeast infections if you overuse it. As well as warts. Xifaxin enables the skin bacteria to regenerate because it’s not systemically absorbed so always go to Xifaxin after taking Cipro to... [ more ]
Patricia Walker I agree with everything you have said. A mirror image of my life. The short time I was on Cipro my life changed. My surgery for K Pouch was 40 years ago. In UK I am not allowed Cipro. I have been nothing in its place. I eat a really healthy diet and have no additives or colouring in food. I a void dairy and fats etc. etc. What more can I say. I feel the medical professional has never believed my symptoms. [ more ]
Lora Zwart I was on Flagyl for about 10 years, Cipro for about 15 years, then Augmentin. Lots of yeast infections & side effects. Yes it works great-but at what cost?? I'd like to know the long term effects. [ more ]
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J-Pouch ForumsGeneral Discussion
Reversal of J Pouch after ONLY 3 months to Permanent Ileostomy
GoldGold
CTB23 I did have C-diff and was treated for that while on TPN. I agree. Get tested for C-diff if you haven't already. It reeks havoc especially with UC flare at the same time. That was my situation. [ more ]
Jan Dollar TPN should buy you some time to sort this out. I cannot imagine that VSL#3 would turn this around when you had no improvement with all those meds. One thing I do not see mentioned and forgot to ask about is whether you have been tested for a C. difficile or CTM infection. Those would not likely respond to the treatments you are on. Jan [ more ]
TE Marie Good luck with the tpn. I hope this helps you feel better. [ more ]
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J-Pouch ForumsGeneral Discussion
iron very low again...
PouchomarxPouchomarx
Jan Dollar Yes, you can have an IM iron injection. However, with the newer IV compositions, getting it IV actually has a better profile, in regard to side effects. IM injections can be painful and cause orange discoloration. But, it is cheaper, because it does not involve the trappings of an infusion. https://www.healthline.com/hea...w-long-does-it-take4 Jan [ more ]
Linguist Just out of curiosity, don't you guys have i.m. iron injections as an option in the US? Does it have to be either oral supplements or i.v infusions? IM injections are pretty common in Turkey. [ more ]
Jan Dollar Molasses is fine, but not enough bioavailable iron to bring up very low levels. Plus, it can cause diarrhea, and you really don’t know how much iron you are taking in. Another consideration is palatability. I am not sure I could force myself to take it reliably. Standard supplements are more reliable. 3 times a day is pretty much the Rx amount of FeSO4 (ferrous sulfate) to treat significant anemia. Spreading the dose throughout the day allows for a lower dose and less risk of GI upset. You... [ more ]
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J-Pouch ForumsGeneral Discussion
I need suggestions on iron supplements for anemia
PouchomarxPouchomarx
Jan Dollar Sounds about right. Jan [ more ]
Pouchomarx yeah he wants me to get labs to check them 6 weeks from last infusion. but wants me to start the oral iron right when infusions are done. [ more ]
Jan Dollar The only thing about taking supplements higher than RDA amounts, is that you need to be monitored to make sure you don’t overload and damage your liver. Otherwise, it seems like a reasonable and cost effective way to maintain your levels. As long as they are effective, of course! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pain
H Hollywood
Winterberry Hello, Hollywood. Do a Google search for "Proctalgia fugax" and see if the description is the same as your symptoms. If they match, at least you can put a name to it and not fear it so much. [ more ]
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J-Pouch ForumsPouchitis
Does yogurt cause pouchitis??
L laludy
Karl S 11 years with J-pouch, yogurts, Kefir and similar fermented milk product with lots of live probiotic bacteria does not work with J-pouch, it's good for people with a colon, but with J-pouch you may feel good after some hrs but after 2-3 days the bacteria overgrown in the pouch and you get burning pouchits and may have to resort to CIPRO if you can't ride out the flare [ more ]
3Rebecca3 I have had problems with regular yogurt and avoid it, frozen yogurt, smoothies, etc. I have tried lactose free yogurt ( recently bought a pack of 4 small ones) and I think they are giving me pouchitis too. [ more ]
palm55152 what options do I have with rectal ca? ad colon ca 32 years ago.. pouch reversed.. I a,m 72 years old and feel fine with pain pills. I do not want surgery nor do I think I can tolerate it [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber pills
Mema 1Mema 1
Mema 1 Thank you all for your great ideas. I'm still using the fiber pills, some days it works and other days nothing. I'm on a new med that gives me the runs (just what we all need, right), but at least I have a number of choices that I can use from your help. Thanks again. [ more ]
kkat I can't tolerate fiber supplements for the same reason and never found one that worked properly. Instead, I have three food sources that I use to get fiber and I usually have one mid-morning and one after dinner - nature valley cinnamon crisps (you can order a huge box online at Amazon), unsweetened applesauce, and bananas. If I disrupt my routine, I'm toast, but if I stick to it, it works great and sometimes I can actually make it through the night! Good luck! [ more ]
TE Marie Thanks for the link Jan. Since the otc imodium isn't dissolving fast enough I ordered the gummies to try. I've been using the psylium in applesauce but think I 'd feel better eating a gummie or 2 instead. [ more ]
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J-Pouch ForumsOstomy & Skin
Tips For Leakage Prevention and Extending Life of Bag
CalifornicationCalifornication
TE Marie Unfortunately I have to cut my wafer as my ileo shape is more oval. I just started putting the ring on my skin vs putting it on the appliance and then applying the wafer ring and all. This has really helped my skin under the wafer plus I've been getting longer wear time. One week is a great accomplishment in wear time! Thanks for your post and links Cailfornication. [ more ]
Mysticobra I use a precut wafer also. I found out after using your own cut and precut that precut has less problems. I can't cut a circle worth a nickel. Lol. You can order some to your size precut. Some places will precut for you.. Or you can buy a cutter that cuts to your size and do it yourself. No scissors. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Decreased pouch gas
T Twilight
kkat I know this sounds off the wall, but it might be worth getting tested for c-diff if you determine that it isn't an obstruction. Hope you get some relief soon. [ more ]
Jan Dollar Sounds like a partial obstruction to me. A full obstruction would have caused much more pain. Go light on solids for few days and increase liquids. If it is pouchitis, your symptoms should be increasing diarrhea, with cramping and gas. Jan [ more ]
Tkanlfcm Pouchitis?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
obstruction
duck11duck11
Jan Dollar You probably need to be seen, as this has been going on too long, and you now have intermittent severe pain. FYI, the ileostomy site is the most common site for obstruction post op. Jan [ more ]
lablover heating pad..drinking lots of liquid and go to the doctor if it keeps up. Obstructions are nasty. [ more ]
duck11 Are there any other helpful thoughts on this? The last 2 days, in addition to the bloating/nausea, I have had horrible, stabbing pain at the site of my ileostomy scar. It comes in waves and I can barely tolerate it. I haven't gone to the hospital because it passes in a couple of hours and I am still passing a little bit of food. Still only eating fluids, and losing weight...anyone? Is this still bowel obstruction territory? I saw my family dr. who aid to try fluids for one more week before... [ more ]
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J-Pouch ForumsGeneral Discussion
JPOUCH BLEEDING
bederyparisbederyparis
Jan Dollar Probably coincidental with the charcoal. However, best to stop it and see if your symptoms resolve. If not, you need to follow up with your doctor. Jan [ more ]
TE Marie It could be cuffitis so if it continues please call your doctor. [ more ]
Funky26 I have had this issue from time to time and it is due to straining during a bowel movement. When you notice blood, is it usually when straining to get the stool out? [ more ]
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J-Pouch ForumsPouchitis
“Keep doing what you’re doing”
C clouwho2
Scott F This can be tough during pregnancy, since so many options are off the table, even for your more knowledgeable replacement doctor. Although appetite is very complicated during pregnancy, if you can manage to substantially reduce carbohydrates you might see some benefit. Lomotil is probably safer than Imodium, at least during the first two trimesters, but it requires a prescription. Slowly increasing the VSL dose may help reduce any bloating, and the bloating often passes if you are patient. [ more ]
clouwho2 Yes I’ve tried all of those at various times, but I can start them up again. Thanks for the reminder of them. The vsl#3 is difficult for me to take (bloating pains), but maybe I can try them again. Jan, Cipro wasn’t offered to me. I walked the doctor through the scope and made suggestions for treatment after he told me he had “read books about my condition that week.” At that point I realized he really didn’t know what to do with me (with much frustration) and decided to walk out. I also... [ more ]
Jan Dollar How about trying Cipro? Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Taking Forever To Get Over a Cold- Remicade?
CTBarristerCTBarrister
Jan Dollar I hope you have had your flu vaccine. If you think a cold was bad, you don’t want the flu. Jan [ more ]
CTBarrister Jan, I definitely agree with all of what you said. I am fine now, but this cold lingered for 2 weeks. It’s true I didn’t get proper rest at several points during the two weeks due to vacation/other commitments I had to keep. It’s also true that I am 54 and perhaps more vulnerable to new viruses. Over the course of the two weeks the symptoms seemed to wax and wane, I would start feeling better and then be lousy again. I think Remicade probably tacked on 3-4 days of linger. I am better now. [ more ]
Jan Dollar Maybe Remicade added a few days, maybe not. Other factors: Each cold is a new virus (as you are immune to past viruses), so this one could have been especially virulent. You admit that you didn’t rest as you should have. Each year you are another year older. Age has its merits, but also drawbacks. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Effect of food poisoning on pouch
I Ivan
Ivan Thanks Claire, your comments are much appreciated. [ more ]
claire Agree with Scott, would try let it run its course. I got campylobacter last year and it really lasted a while... but gastro said not much point / evidence for antibiotics. I wanted to avoid them anyway. It cleared up by itself with a gentle diet and lots of hydration. [ more ]
Scott F In most cases of food poisoning, without evidence of persistent infection, antibiotics are worthless. Most causes clear up on their own, and the others should usually be treated with a specific rather than a random antibiotic. This is different from "traveler's diarrhea," which may well be worth treating. Xifaxan (if you can afford it) can be used to treat traveler's diarrhea. [ more ]
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J-Pouch ForumsPouchitis
Possible Bacterial Overgrowth - Not Pouchitis
S slouchypouch
JLH I didn't have any of the tests because my doctor also said they were hard to interpret. I went on the diet and had good results, so that was the best test. googled fodmap and was pleasantly surprised to see how much helpful information is now available. If you were going to go on the diet yourself I highly recommend getting the app: http://www.monash.edu/industry/success-stories/fodmap . I couldn't have figured out the diet myself without it. If you can figure out the diet then you can... [ more ]
slouchypouch I ended up getting tested and came back negative for SIBO. [ more ]
JourneyToWellness @JLH Thanks, I got the same price quote from Kate Scarlata, and I found a couple of other names that were covered by my insurance too. I go to Beth Israel, but my GI seemed to think the SIBO tests were not worth it because they are difficult to interpret. I was thinking of trying the elimination phase on my own and then getting help reintroducing foods... Glad to know it worked for you before you switched to the K pouch. Which test did you use to determine SIBO? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis/Cuffitis and Cipro Damages- Need Advice and Support
N NuAnoos
NuAnoos Well, Xifaxin and Flagyl only reduce my pouchitis but neither cure it. It sits there, waiting for me to go off the Antibiotics and then boom, I get nailed again. My achilles are still a mess from the dose of 3 days of cipro I took back in June. I have pain, cannot run, do a lot of soaking in the bath in the evenings. They are tender even sitting at my job if I don't wear my ankle supports. I think maybe I've ruined them, but keep hope that they start feeling better and I could maybe... [ more ]
NuAnoos Finished a cycle of Xifaxin last night. It gave me the worst gas probs but overall I think I feel better. I'm avoiding all alcohol as it seems to trigger pouchitis. Avoiding lactose. Taking Manuka honey, not sure if it works but it tastes good!, and avoiding high sugar foods. I tried FODMAP but no way I can do that. I already am trying to cut out certain carbs but the FODMAP is about 10 times more extreme than I can hang with. I hope things continue to stabilize or I'll do another round of... [ more ]
Leila airhart I am glad to hear you are feeling a little better. You have to be a strong person to be open about our issues we have and thank you for sharing. Most people have never heard of c diff. Anytime I have water bms that linger, I call the Dr and drop off a sample off at the lab at the hospital to see what's going on. I have chronic pouchittis and the Cipro and flagyl mess with the tendons in my hands hurt and if course a lot more side effects but they fix us. Stay strong! [ more ]
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J-Pouch ForumsK-Pouch Korner
Pouchitis & imodium
D Dyna
bowelsofhell Imodium isn't anywhere near powerful enough to do that. All it can potentially do is slow you down (and it probably won't be of any help with that in the face of virulent pouchitis, anyway). When pouchitis is really bad your symptoms can be wide-ranging and disabling. Diarrhea's just one component of it. Even if there was a drug strong enough to mask its symptoms (as opposed to actually treating it), the inflammation would show up in your scopes. [ more ]
Dyna The reason I asked the question is if Imodium can mask pouchitis systems can pouchitis untreated cause the pouch to deteriorate and fail? [ more ]
Shavon I use Lomitil which is is stronger than Imodium. It gives me some relief - especially at night. [ more ]
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J-Pouch ForumsGeneral Discussion
MRIs, who "reads" them?
n/an/a
n/a Thanks all, but as it turns out, it's probably going to be a moot point. Just scheduled a pouch removal for November 24th. I'll be posting another post later re. the whys and what-fors. [ more ]
jason411 My GI and Surgeon are CC doctors and they have no problem with me getting my imaging and blood work done elsewhere, since my wife works for a local hospital and all of these kinds of tests are free for employees and their families. The only thing I have done at CC are scopes, because I won't trust that to anyone other than my surgeon or GI doc, so you shouldn't have a problem. My local hospital sends the bloodwork results and imaging to my CC docs without issue. [ more ]
Jan Dollar The only reason I can think of for demanding an MRI to be done at the CC, rather than a local facility, is that the techs are familiar with what exactly the doctor is looking for and will be sure to cover the necessary area. Other than that, the technology is the same. The imaging facility should be able to email the images and radiology reports to any facility and/or the ordering physician. Imaging is all digital now. Jan [ more ]
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J-Pouch ForumsPouchitis
finding a gastrologist near chicago area
DA DON alias (Butt Blaster)
Todd C No Problem....Good luck with it all [ more ]
DON alias (Butt Blaster) Thank You Todd I am having procedures done by Dr. Hyman my problem is my insurance does not except The 3 major Hospitals UOC RUSH or Northwestern Dr. Hyman and the hospital did me a favor I am trying to find an insurance company who works with them Thank You I will request him. [ more ]
Todd C Dr Ira Hanan out of the university of Chicago is very familiar with the J Pouch and pouchitis. http://www.uchospitals.edu/physicians/ira-hanan.html [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch removal and fistulas
n/an/a
n/a Thank you IAHUTS. Sounds like things will get back on-track for you soon, I'm glad to hear it. Your story was so helpful. Where did you have your surgery done? Was it close to your home town? I'll be having it done about 3 hrs. away, so have a few concerns there, especially if anything needs irrigation or packing. Do you do the irrigation yourself? How often are you going back to the dr. for quick (hopefully quick) checks? Were you in pretty good physical shape when you went in for the... [ more ]
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J-Pouch ForumsGeneral Discussion
Recovery after last surgery
N Nicolajs
JPanto Yes, I ended up having mine completed in two surgeries. Was in the hospital for 3 days and the only thing I would have done differently following my 2nd surgery is to have taken it a little slower reintroducing foods. The burn early on is no joke, but can be managed with barrier creams. After 10 years living with UC slowly taking away my quality of life the outcome following surgery has been better than I ever expected. I am sure there will be some challenges in the future, but will take... [ more ]
Nicolajs That doesn't sound too bad after all Jpanto. Glad to hear you are doing better and better. Your 2nd surgery, was the the removal of the bag, and therefore also the last sugery? [ more ]
JPanto My 2nd surgery was a breeze compared to the 1st. Take down on Sept 17th and back at work Sept 29th. Would have probably waited another week if I didn't have a job that allowed me to sit for most of the day during my recovery. The first week home I was making 12-15 trips to the bathroom and now just over a month out I am going 6-8 time a day. Could make it less, but still haven't completely gotten out of the old habit of heading to the bathroom when I feel the need. My only frustration, which... [ more ]
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J-Pouch ForumsK-Pouch Korner
Traveling for surgery?
S Shavon
Shavon Thanks for all of the feedback. I traveled to Cleveland last week to meet with Dr Dietz at UH Cleveland. The flight wasn't bad at all - only an hour. I used Air BnB for the first time to help lower the cost of the trip. The nurses helped me feel much better about having surgery away from home. Apparently most of his patients are from out of town so they are good at making accommodations. I'm having surgery next month after this Stelara gets out of my system a bit. I'm in the process of... [ more ]
JLH shavon i'm not clear about a couple concerns. Has A G.I. doctor said you are a good candidate for a k pouch? if so, is your concern about traveling relative to having the surgery away from your home town or traveling in general after the surgery? I live in Boston, where one would might assume such surgery would be available, however I needed to go to Cleveland clinic. this was in 2015 and Dr. Dietz did the surgery. As you're aware he has since transferred over to University Hospital. I would... [ more ]
skn69 I seem to be an old hack at this... I lived in Toronto and traveled to N.C Duke U to have Gracillis muscle flap surgery twice (they used both legs)...the first was sort of terrifying (and painful as heck) but the second was horrific...both ended up failures. My Canadian health insurance covered both trips, family to accompany me and my whole hospital and post-op stay (6 weeks each time). Once I moved to Paris I found myself hanging out on a limb...no one knew what a kpouch was and no one... [ more ]
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J-Pouch ForumsOstomy & Skin
yuck! and does anyone have any ideas?
GinLynGinLyn
JohnG. ❤️
TE Marie The Mayo Clinic site says this happens with auto-immune diseases including IBD. Is that what your doctors said? I hope it clears up soon and well. [ more ]
GinLyn Hello, all. Sorry again for the delay! Simply too much going on. It turns out I have a pyoderma, so am being treated with topical steroids and such. It had actually closed up last week so the doc dropped the steroids to every other day, but this past week -- of course, while on holiday! -- it opened up again. So back to the daily regimen, and phoning the doc on Monday for another appointment. Anyone else deal with one of these? Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Whole 30 Jpouchers?
B blufnger03
Kenzer Hi Alana, Ive tried Whole30s a couple of times, and the digestive "ailments" have always stopped me early, but I have chronic pouchitis as well. I think it's too much fiber for me. I'm planning to try another one soon but making sure everything is WELL cooked and incorporating more smoothies. The real food aspect seems to calm down my inflammation. Hope it's going well for you!! I'm definitely interested to hear your experience. -Mackenzie [ more ]
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J-Pouch ForumsGeneral Discussion
Lower back pain - related to Pouch?
aka KNKLHEADaka KNKLHEAD
skn69 Not to add to what everyone else has but... We are the same age, I have had my k pouch since 1979 (nearly 40 yrs) and have so many abdominal surgeries (including a colostomy at age 2) that I have stopped counting...that said, I have abs of steel. From day one, I have worked my abs as best I can, knowing that they are the support system for both my k pouch and my spine...I stretch with a home neck stretch thing given to me by my chiro, do isometric, isotonic and yoga exercises, walk miles etc... [ more ]
aka KNKLHEAD Yes! (and not immune from me getting older and needing more exercise!) [ more ]
Jan Dollar Good news indeed! Just goes to show you that we are not immune to ordinary ailments! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Waking Up After 1st Surgery
Erika SErika S
aka KNKLHEAD I had a drain and a nasal gastric tube (tube that went through nose to stomach) for most of my many surgeries. There were a few where I didn't have the tube. I always get nauseous after surgery and one time I didn't have the tube I was vomiting like crazy . Not too fun or even good after our surgeries! They use these during surgery, and the surgeon had it removed. But sadly, they had to put a tube back IN when I was conscious and I wouldn't wish that on anybody. On subsequent surgeries I... [ more ]
CTB23 I had a catheter and a drain. I had the laparoscopic/robotic surgery. The catheter was no big deal when it was removed, but the drain was more painful to take out. They do it quickly! [ more ]
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J-Pouch ForumsPouchitis
Chronic active pouchitis
C canlafre
jeane Chronic pouchitis is hell. I can be fine one day and failing miserably thenext when it starts. I always have low level pouchitis on all biopsies and ulceration on the suture lines in pouch. [ more ]
bowelsofhell Mine is chronic and used to be moderate, but for the last couple years it has been severe. Antibiotics didn't help, nor did Entocort. I'm currently on Humira and Prednisone. The Prednisone's not helping much but the GI isn't comfortable stopping it yet. If the Humira works (just started it), I will hopefully ditch the Prednisone. Entyvio was another treatment option but ended up lower on the list because I also have joint and skin inflammation. [ more ]
jeane I’m sorry to hear this. Both my GI and surgeon never worry about my chronic low lying inflammation and I have also had numerous issues since my surgeries. If your quality of life is severely disrupted from the chronic pouchitis then I understand their suggesting surgery. I completely understand the reluctance for more surgery. I’ve been fighting it as well due to a chronic stricture. Have you tried xifaxim to get off the cipro?. It can help too. Also maybe a gluten free diet? Gluten,... [ more ]
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J-Pouch ForumsGeneral Discussion
JPouch stricture, surgeon recommending illeostomy as ONLY solution
M MrsBrightside
TE Marie I had my j-pouch removed for many reasons with the strictures becoming the final thing I couldn't successfully battle. I have an end ileostomy and it is night and day better that the temp, loop, one was. I also feel better now that I am not in a constant battle with my sick j-pouch. [ more ]
Mysticobra I can attest to that as fact. Richard. [ more ]
Jan Dollar Well, orinarily there is a loop ileostomy if you have a two step procedure. This is the ileostomy after pouch creation. It leaks a lot and is a terrible ileostomy compared to the end ileo. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Removal of J-pouch & Crohns
D DavesGirl
TE Marie That's where my removal surgery was done by Dr. Mathis. I hope all goes well. He is in good hands! Let me know if you have any questions about anything. I've been to 3 departments there over 4 years. [ more ]
DavesGirl Well today we arrived at Mayo for the excision (removal) of his j-pouch and permanent ileostomy. Well wishes and prayers greatly appreciated! [ more ]
TE Marie I was diverted to a perm ileo too. 6 months later I had the j-pouch and rectal stump removed. The reason for 2 surgerues is I hoped my j-pouch would calm down and I could avoid the big surgery to remove it. I had this done at the Mayo Clinic in Rochester. The biopsy of my removed j-pouch showed pouchitis. Both my Mayo GI and surgeon were wonderful. [ more ]
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J-Pouch ForumsGeneral Discussion
why do the use tissue that is infected to make the cuff?
H Halo52208
Jan Dollar The main thing is that you are OK with your decision. You certainly are not the first to scrap the pouch due to insurmountable cuffitis. Good luck with it and I hope it goes wellwith a minimum of post op bumps. Jan [ more ]
Halo52208 Thanks guys. I'm going to go with the surgery. She didn't sound very positive. But I don't care how hard it will be. I'm done living this hell. [ more ]
jeane Have you tried any injectibles like simpomi before ditching the pouch? I have struggled since day one as I should have had a three step procedure. My cuff is always a mess also w scar tissue. I think the percentage of those of us w chronic cuffitis is higher than most surgeons would like to admit. Also, raw, diseased tissue and high doses of steroids don't make a good healing combination which can result in chronic strictures which I also have at my outlet connection. [ more ]
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J-Pouch ForumsGeneral Discussion
Foot pain
C canlafre
skn69 I have it especially in the summer if I walk barefoot in my apartment that has tile floors. After the 1st summer that it happened, I tried something new...I used the TENS machine on it at my Phystiotherapist's...I did about 6 sessions...they put the pads on the souls of my feet, first testing it on the right foot...it worked wonders. I had him do both feet and it more or less disappeared. It is back again after about 4 yrs and this time I have bought the machine and am about to try it on my... [ more ]
Mary O My plantar fasciitis comes and goes. I already wear custom orthotics 95% of the time out of the house but an incident with a very small heel (without orthotics) sent me back to square one. Being barefoot, especially on a solid surface, is your worst enemy. At home, I wear a pair of Crocs with significant arch support without the orthotics and it's the most comfortable shoe I own (and I've tried many). Just too ugly to wear out of the house! [ more ]
Mysticobra Good shoes is the only answer. And you (I) have to be careful how I step as not to cause injury to it. It's an everyday. Every step. Be careful. Nobody is cutting on my feet. That's what they wanted to do. No way. [ more ]
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J-Pouch ForumsGeneral Discussion
Blocked oil ducts on eyelids
G GraceB
JLH re dry skin. solution was probably not what i was suppose to do, but i did--used otc cortisone ointment and made sure some got on my eyelids. after three days skin back to normal and i stopped my home treatment. never had a cyst and hope this goes away. other problem, which is better with the cortisone ointment, is my eyes are stuck shut when i wake up. need to use my fingers to open them!! small issue on the face of other med probs so i just let it humor me. need to keep eyes open!! jlh [ more ]
GraceB I did have flakey skin on my eyelid when cyst was very inflamed. Using warm compresses was drying my skin. It went away after cyst got smaller. Jan I had the same as you meiobian cyst. I am seeing a eye surgeon. Three days after shot it started to go down. I hope I don't get any more. Thanks for everyone's input Grace [ more ]
JLH has anybody gotten extremely dry and flaky skin in the area between the eye lid and eyebrow? This seems to be a problem along with my dry eyes or inflamed eyes or whatever they are if so, any special cream that eliminates the flaky skin? I put cream on it five or six times during the day and it still is flaky thanks, Janet [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch Function
J Jddarr66
Jddarr66 I will say this. Up until recently I would have a movement an hour after I ate. You could almost set a watch to it. If I ate four small meals, I'd have four movements. I never was incontinant at night. Now I'm doing good to have two good movements and I have leakage during the day. I'm having to wear underwear guards during the day and depends at night. Maybe it's a kink or a slight blockage. I hope not because it sounds like surgery is the only way to correct a kink and my last surgery... [ more ]
Scott F Fair enough. Maybe back up the troubleshooting one step, though? If you feel an urge to go (or a sensation that simulates it), but nothing comes out, a key question is whether the pouch is full or empty (or somewhere in between). A temporary or partial blockage upstream can create plenty of cramping without a full pouch, and have nothing to do with a pouch problem. There are plenty of possible pouch problems, too, of course. If you want to get fancy/aggressive you could try irrigating your... [ more ]
Jddarr66 Because of the problems I've been having. I'm just trying to troubleshoot things. Also I'll have movement contractions and feel like I need to go but the contractions will subside and nothing happens. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Whats going on
Paul HPaul H
NJshoremom I had similar explosives episodes starting 5/6 yrs ago. Diagnosed Chrohns. With zero symptoms.GI Dr started remicade - 1.5 yrs or so-didn't work. Then couldn't empty fully, followed by a fistula, seton,multiple stricture procedures-to eventually not being able to empty. Anal area eventually developed infection. Finally had to change surgeons and sought out Dr Remzi- who agreed no chrohns, but plenty of adhesions,infection,fistula and stretched out jpouch causing the fistula. I think for me... [ more ]
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J-Pouch ForumsGeneral Discussion
Anal pressure after surgery 2/3
K 07kro
Bobish When I first came out of hospital, I would have been very happy with the symptoms you describe, I think your doing well. Everything will be sore as it's been chopped and pulled around a bit. You could have gas or more mucous than you think. You could try bathing your but with warm to got water (opens the bowels and makes it easy to excrete). I found this really usually for dealing with this type of pain. When your note flexible you could try going on all fours, face on floor and ass in air,... [ more ]
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