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J-Pouch ForumsGeneral Discussion
Antibiotics for pouchitis
T T-man
T-man Just wanted to follow up. I went back on Cipro and felt 100% better within a day. [ more ]
TE Marie Maybe you can try it again and rotate it with a different one. I'm rotating Augmentin and Xifaxan but the Xifaxan is very expensive. [ more ]
Scott F When Cipro stopped working for me, adding Flagyl did the trick. I tried other individual antibiotics first (Augmentin, Xifaxan), since one drug is preferable to two, but none were effective for me. [ more ]
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J-Pouch ForumsGeneral Discussion
WILL IT GET BETTER??
bederyparisbederyparis
Elisa W Yes! It will get better. I didn't have the frequency issues you are having, but I did have severe rectal pain and pressure. I saw my surgeon about two weeks post-takedown, and he diagnosed cuffitis. Medications helped, and I'm also on a low dose of anti-depressant for irritable pouch syndrome. I'm six weeks out now and feeling really good. Do you try to hold it when you have the urge to go? I know with UC there was no chance of holding it, and I was so used to having to run to the bathroom... [ more ]
thumprhare I was there two weeks post takedown. It. Was. Horrible. I actually started doing a BM tracker app, he'll why not I am in the bathroom anyway?! It really did take weeks to see a trend. I have a menagerie of pastes. I think using an antispasmodic early on would have been helpful. I take levsin. I think earlier use of choleystiramine May have helped. I was treated for pouchitis around three weeks out. But sadly, frustratingly....time is the big helper. Now four months out....I have an idea of... [ more ]
JHendrix I clearly remember thinking I had made a huge mistake after the surgery. Although I didn't liket the 'bag' it seemed preferable to the ridiculous number of bathroom trips, the burn, the frustration. I know that there was a marked difference at four months and then another qualitative difference at six months. I never did get to the four to six bms that are supposedly average.I am more like 7 - 8 but it all feels quite comfortable now. I urge you to be patient, to use a 'thickening agent'... [ more ]
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J-Pouch ForumsGeneral Discussion
diversion pouchitis is back, a few weeks since last time
PouchomarxPouchomarx
Pouchomarx knock on wood the diversion pouchitis has not been an issue. I will be having my redo/revision on October 19th with Dr Remzi at the Cleveland Clinic. I remember when i had my pouch initially i dealt with cuffitis but Canasa cleard it up and minor pouchitis at some point but i took Entocort for several months and it went away. I never really did the antibiotic thing. I have a very nice pouch, it just has this damn leak and a sinus as well. lol [ more ]
Jeffsmom Pouch, hope you are feeling a little bit better. Jeff has diversionary pouchitis as well. If he has any symptoms, I have no idea what they are. Come to think of it, he did have a little bit of bleeding. But other than that has been doing ok. [ more ]
Pouchomarx I was diverted back to an ileostomy over a year and a half ago due to a jpouch leak. The only symptom i had with the diversion pouchitis was alot of bleeding. Dr Shen went up with a scope and sprayed pouch with dextrose and plugged it up with a tampon, yes a tampon..lol. after two days bleeding stopped completely. A month or so afterwards i started to notice a little blood again, and i did the Rowasa enemas before bed for 3 days and it was all better [ more ]
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J-Pouch ForumsGeneral Discussion
Inconsistent...
C ColoradoCarrie
Deanna6 everyones food suggestions should just be suggestions because what works for some doesn't work for others . I am like 10 months out and I'm still having difficulty and figuring out foods. I don't eat a lot of salads because it doesn't break down well enough for me because of a very narrow " exit" . Lots of people day things like " well I didn't baby mine and just ate what I wanted right out of the hospital" well that didn't work for me unfortunately and I'm sure some things I eat you all eat... [ more ]
DoughBoyInPHL78 hey, i would not say salads are bad for the pouch. I eat a salad atleast once a week or twice a week. While, a salad is considered roughage for like a newbie j-poucher. No literature or doctor on the planet will tell you "salads are bad for the pouch" because that isn't true. What works for some of us, eating wise, isn't the case for everyone with a pouch. Some can eat what others can't and visa versa. Eating ANYTHING with a pouch is TRIAL and ERROR. But i would'nt go as far as making a... [ more ]
Jan Dollar Hmmm. I eat raw salad every day, and have done so since my pouch surgery in 1995. Never had a problem with them. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Gum graft surgery, question on meds ??
PouchomarxPouchomarx
TE Marie The reason for taking antibiotics for some dental procedures is precautionary for your heart. I think the antibiotic was okay, it may depend on what kind of antibiotic it was? I had c.diff several times with my colon and the first time it was caused by Cipro. Before I had chronic pouchitis I had to get 2 stitches in my lip. The Urgent Care doctor prescribed a heavy duty dose of the same antibiotic given Pouchomarx. I contacted my Internist and she said NOT to take it as I would notice right... [ more ]
Pouchomarx had a few very hard chips come out of bag this morning so hopefully the rest will be passing soon as well [ more ]
shawne h I would think after being exposed to gastric acids it would be pretty broken up by the time it gets to the end of the line if you find things are not passing then you can start to worry. [ more ]
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J-Pouch ForumsGeneral Discussion
gum graft...might have issue now
PouchomarxPouchomarx
TE Marie Poucho, you and KNKLHEAD are real adventurers! Was it something like a reed, used for clarinets and saxophones, in shape but made out of resin? You are brave! I need to search your past posts to see what they used the grafts for. It is a mucus like consistency. [ more ]
aka KNKLHEAD Come on, don't keep us in suspense already! Did you pass it? [ more ]
Elisa W Hope it's all still passing! (Or already passed!) [ more ]
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J-Pouch ForumsGeneral Discussion
v s l 3
ketchketch
Scott F Recommendation for VSL#3 capsules per day VSL#3 packets per day VSL#3 DS packets per day Dietary management of gas and bloating in IBS 2-4 capsules 1 packet N/A Dietary management of ulcerative colitis (UC) 4-8 capsules 1-2 packets 1 DS packet Dietary management of active UC 8-16 capsules 2-4 packets 1-2 DS packets Dietary management of ileal pouch (pouchitis) N/A 2-4 packets 1-2 DS packets The above is from the company web site. The last row is the one to look at (I hope the table show up... [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro+Flagyl
tamsstarktamsstark
marz ❤️
tamsstark Thank you Scott and Fosty! I'm glad to hear it worked good for you both. Keeping my fingers crossed. [ more ]
Scott F When Flagyl did nothing for me originally I switched to just Cipro, and that did the trick for several years. Eventually the Cipro lost effectiveness, and other choices weren't working. Only then did I combine Flagyl and Cipro, with (so far) excellent results. [ more ]
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J-Pouch ForumsGeneral Discussion
Bidet deal
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Going very well! I feel pretty good, trying to dial in a bit on the leakage thing right now, but it is not a show-stopper by any means. (Speaking of "stopper," I thought if there was such a thing for us!) No big surprises, emptying well, hitting the lew about 6-8 times a day, one night wake-up call or so. I couldn't be happier and hope to continue to progress. Hope your plans are in place! [ more ]
Pouchomarx hey buddy, hows it going?? [ more ]
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J-Pouch ForumsGeneral Discussion
Is there ANY hope for j-poucher w/ Crohns?
tamsstarktamsstark
Jan Dollar The gastric inflammation should not preclude a gastrostomy tube. Even if there was too much stomach inflammation for gastric feedings (unlikely), they can pass the tube through the stomach to the jejunum. Also, even if TPN becomes necessary, enteral feedings as tolerated will reduce the volume of TPN needed. Your son is at a critical growth period (less so if he has already reached his adult height), so it is important to get his nutrition levels back quickly. Fingers crossed for you that... [ more ]
rachelraven TPN is useful and has its place, but has more complications than using the gut. I know in our hospital, we shy away from it unless completely necessary. I would imagine they'd push to use tube feeds before TPN for multiple reasons (lines get infected, TPN is expensive, TPN can cause lab issues long term, TPN can cause liver disease and I ssues, etc.) unless the goal was to rest the gut, or if gastric feelings fail. [ more ]
boy's mom I don't remember specifically regarding how fast the weight gain was on TPN. I think it helped weight gain, but in a gradual way. I know there are some risks associated with it. Cutting out dairy specifically helped reduce stomach aches so that also helped weight gain. We put acacia powder in capsules for fiber and that has helped bulk up stool also. [ more ]
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J-Pouch ForumsGeneral Discussion
Vsl#3
ketchketch
ketch i am from UK therefore the Meds I get are free! I just think if I am ok then don't start taking what not needed. Thanks [ more ]
Jeff D From my understanding, VSL #3 serves as a deterrent against pouchitis. You have to consider the cost, because it can be expensive for some. I have a Blue Cross plan. The pharmacist revealed that it was the same cost for 60 packets as it was for 30. My GI doctor wrote me a script for 2x packets a day, but instructed me to take one per day so it lasts for 2 months. [ more ]
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J-Pouch ForumsGeneral Discussion
Update / questions
RE5RE5
RE5 Yeah you pretty much hit the nail on the head. The temp ostomy was literally the worst time of my life. Before I got diagnosed with this mess I was into the world of 5ks and bodybuilding, after the ostomy I couldn't even do what I loved anymore. I have a bad latex allergy on top of being sweaty after running lifting and my ostomy site was raw 24/7. I was perfectly fine with the jpouch a year in and had my life back so it's literalky so hard for me to give up on it but, it's literally killing... [ more ]
Jan Dollar Sorry you are dealing with this. I don't have Crohn's (at least not yet!), so I can't give give you that sort of advice. That said, if none of the available medical treatments are improving your quality of life, you may just have to consider an ileostomy. I presume you have been avoiding this option as a last resort, but that may be where you are. You are too young to be a long term bowel cripple. I hope someone comes along with something new to try. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Dreadful butt burn
K Kirsty
Jeff D The only thing that came close to eliminating "butt burn" was when I took Omeprazole for an extended period of time (several months). I was given the go ahead to take it for that long by two doctors because the suggested time frame is only several weeks. After taking it for almost two-three weeks, for the most part I did not experience "butt burn". It worked so well that I began sleeping through the night. Well, this led to accidents in the night because the burning sensation is what I often... [ more ]
n/a Keep a thick layer of barrier cream on at all times. Also, have you considered a bidet? [ more ]
Jan Dollar How about trying an acid reducer, like Tagamet, Pepcid, or Zantac? Some people get good relief from the butt burn by reducing stomach acid. Also, fiber supplements may help by helping to absorb the excess acid and adding bulk to the stool. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Just Wondering? Has anyone else had this happen?
MysticobraMysticobra
msjovi Yes, I have had many extra intestinal manifestations. Not a rash like you are describing, but I have enteropathic arthritis in my hands, iritis 3 times and, the worst of all, I had a pyoderma gangrenosum deep ulcer on my calf. I was told these were all autoimmune conditions related to IBD, irrespective of having my bowel removed. [ more ]
LoraCH I have gotten iritis a few times ... it is floaters and flashes in the eye(s). I was told it was from the autoimmune of UC by the eye dr. [ more ]
skn69 Yes, I've got severe alergies that range from hives to anaphalaxia that requires emeregency hospitalization...I now take a benadril every morning for life (to prevent it from starting up in the first place)... I have arthritis as well...not sure if it is related or not or just a side effect of all of the abdominal surgery and related inflamation. We've got fibromyalgia, hypo-thyroidism and some other related diseases in our family so I am not sure if the auto-immune is heriditary on not but... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgeon recommendations - Topeka, KS?
C cbinks
cbinks Thank you for the responses and suggestions. [ more ]
Larose This is my first post although I have been reading and commiserating for over a year. When you asked about a central KS physician, I felt I needed to reply. My surgeon, Michael Porter, in Wichita was able to help with recurring stenosis of my cuff. In an outpatient dilation procedure, he was able to increase the outflow from "silly string" to a more normal stool. (Sorry about that visual). Anyway, I am 10 years out with no problems except the stenosis and a few bouts of pouchitis. Perhaps he... [ more ]
Scott F When I lived in Kansas City my gastroenterologist was Gregory Barber. I owe him a great deal. After several surgeons had turned me down for a J-pouch, and I'd kind of given up, he encouraged me to explore further, and I'm * very * glad I did. I left Kansas City shortly thereafter, so I don't have much direct experience with his skills at J-pouch care (e.g. pouchoscopy), I'd trust him to be honest about it. Heck, my current GI has learned along with me, and could be trusted to do so. [ more ]
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J-Pouch ForumsGeneral Discussion
GI doc vs. Colorectal
C ColoradoCarrie
Scott F The colorectal surgeon who actually performed the procedure will sometimes be quite willing to continue care for an extended period. A brand new surgeon will be less likely to be eager to care for "someone else's" pouch unless future surgery is on the horizon. [ more ]
mgmt10 My surgeon told me I could come see him for my j pouch if any problems arise. But my GI dr. also has good knowledge of j pouches. So I could go to either one. A good GI doctor who has experience with j pouches is probably the best bet as they usually have better availability. [ more ]
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J-Pouch ForumsGeneral Discussion
JPouch Construction Surgery
NS Nora S.
Ikh I was really anxious, I feared my surgeon would sturggle in building the pouch, or that it wouldn't be possible to perform (a very small percentage of people can't). The post op was quite the same as the first, then it depends if laparotomy or laparoscopy, if yours is laparoscopy, you will have very small pain. Regarding the last question, yes you will have some bathroom trip to empty some liquid which the pouch will produce. It will be absolutely normal. My surgeon advised to take... [ more ]
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J-Pouch ForumsGeneral Discussion
Two Weeks Post Takedown: Questions and Fears
P Polaris
Jmama ❤️
Shainy give it another 4 weeks at least. all of this is normal at the beginning. do you take any immodium? that helps to reduce the acidity of the output. also once your output starts firming up a bit you will find it easier to pass gas without having to go to the toilet. I find when lying down in bed at night, if im on my right side and I feel the pressure in the pouch from gas, I relax and the gas moves to the pouch outlet and then I can gently release it. I don't try this when standing during... [ more ]
aka KNKLHEAD I second the advice of addressing your concerns with the surgeon -- but also noting two weeks is not a long time at all. There are also lots of variables right now that you have to get a handle on. If you have a non-leaking pouch, that's the first great thing! Hang in there and give it a bit of time! Also, I have a bidet that I use and I think it is pretty helpful (I am three weeks out from "new" takedown.) I'd be extra cautious now, too, about diet -- maybe stick to some soft foods the best... [ more ]
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J-Pouch ForumsGeneral Discussion
taking metamucil & vsl3
Paul HPaul H
Jan Dollar I would suspect that taking probiotics with a fiber supplement would be similar to taking it with a meal. Regardless of how you take it, it would get where it needs to be (there are no detours in our gut). As long as you have a probiotic that is capable of surviving the stomach (strain specific), it should adhere and colonize in the gut. For whatever reason, those with IBD tend to be less able to colonize with probiotic bacteria. This is why the use of probiotics on a regular basis has been... [ more ]
Ikh Great supposition folks! On the contrary I always believed that Psyllium would flush the vsl3 out and not allowing the probiotics to establish in the pouch, SO I always space well the intaking of them. I take the psyllium after meals as a way to provide the fibers I generally don't take during lunch, and Vsl3 in the morning on empty stomach. But as already said: who knows? [ more ]
JHendrix I'm with Scott. I somehow imagine the fibre helps the probiotic to reach the bowel. I have nothing to base this on but I like to think it's true. Makes intuitive sense to me though(?) [ more ]
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J-Pouch ForumsGeneral Discussion
Amazing lidocaine rectal cream!
rachelravenrachelraven
rachelraven It's built up scar tissue near the fistula/seton. [ more ]
JHendrix I'm sorry I'm late coming to this thread but am curious about a perianal granuloma. (What is it, what does it look like and cause?) Thanks alot for any explanation. [ more ]
cassiecass rachelraven I also will say it work great.Ask yor Md if he has those $10.00 coupons.Walgreens had it recently on sale I got mine for $14.99 Love coupons Cassie [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium and Imodium
ConniesConnies
JHendrix I am a bit over the average for metamucil (although I use pysillium husks as I hate the sweet taste of Metamucil). I take a very large teaspoon -more like a tablespoon- four time per day. At your stage I took Imodium at 3 pm and at bedtime as evening was more active but I don't often take any now. Hope all of this input helps...trial and error, error and trial. [ more ]
CTBarrister I find that a half dose or one full teaspoon of metamucil works best. The full dose causes too many bathroom trips. [ more ]
Shainy I was told the optimal time to take immodium is about 30 minutes before a meal but I just take one at night before bed and it works for me [ more ]
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J-Pouch ForumsGeneral Discussion
POST TAKE DOWN OPERATION
bederyparisbederyparis
mgmt10 Check with your surgeon before taking Imodium unless he already gave you the go ahead. My surgeon wanted me to wait a full two weeks before taking anything to allow some healing time. My two cents is start with the Metamucil. I always say not to take Imodium unless its really necessary to,allow your body to adjust on its own. Of course there will be times when you just need it. The wine could have definatley increased your bm's. Absolutely. Your frequency will go down in the coming weeks as... [ more ]
Scott F I used both Metamucil and Lomotil (similar to Imodium) from the very beginning, and they served me well, though I was careful not to overdo either one. Many (most?) of us who've been successful went through a procees described as "stretching the pouch" - delaying visiting the toilet when the sensation of fullness starts. In the beginning you may want to be near a bathroom when you do this, until your capacity becomes clearer. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Incontinence after 15 years
JS Jamie S
twinkie Ask ur GI Doc for a script for biofieedback training to strengthen ur anal sphincter muscles to treat fecal or urinary incontinence. (All they had in that dept. was a urinary incontinence program (2007-08). When I went thru it, it worked. I was the 1st one they ever tried it on for fecal inc.) Hope it helps. [ more ]
Jamie S Thanks everyone. I will try going without coffee (ouch!) and Citrucel. I will also talk to my GI guy about switching the Cipro... [ more ]
Scott F I do better with a thickener (e.g. Citrucel or psyllium). Why not try a day or two with no coffee to see if that fixes you up? Once you've got things tuned up you could add decaf and see how it goes. [ more ]
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J-Pouch ForumsGeneral Discussion
Ongoing Issues
F Fosty
Fosty Thanks Shawne. Hoping to wait until Jan if possible. Just started Cipro / flagyl with high hopes. I have spoken with others that have said surgery well worth it in the long term. I want a better quality of life even if inconvenienced for a few months of recovery. Best of luck to you! [ more ]
shawne h I am waiting for a date for removal as well four months so far no date as yet. Good luck scary stuff have had pouch since 1987 the last few years have not been fun hope the future is more predictable in regards to how things function when one gets up in the morning. Jan is a ways off for sure. [ more ]
Fosty I didn't have a pouch exam but was in hospital a few weeks ago and had rectal which no stricture at that point. Just spoke with doc office and prob stop Entocort and do Cipro and flagyl combo for now. Having pouch out in Jan so hoping to last till then. Ugh ): [ more ]
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J-Pouch ForumsGeneral Discussion
Follow-up care with surgeon or GI?
L lixxie
lixxie I emailed my old GI and he says he's happy for me to come see him. Thanks for the replies! [ more ]
mgmt10 As long as your GI doctor has experience with j pouches then I think it's ok to see him/her. Mine does as she has several j pouch patients. My old GI dr. which is closer to my home has no experience with j pouches so he was a no go. My surgeon told me I could see him for any issues as well. [ more ]
Mysticobra Everyone is different as I read. I still see my surgeon. Almost two years post op. I was going to stop seeing her but she said it was not necessary to go to a gi and I could just see her. I feel more comfortable seeing her because she did it and knows just as much as a gi. And appointments with her are easy. Just my experience. [ more ]
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J-Pouch ForumsGeneral Discussion
leakage!
W wooly-bobs
Scott F I find that Lomotil at bedtime helps. I also use psyllium with dinner. Is it possible you have a touch of pouchitis? Have you tried VSL #3 or a course of Cipro? [ more ]
Fosty Maybe some lomotil or Imodium at nighttime. Should help the leaking and get a better sleep. [ more ]
thumprhare Perhaps bedliners used in healthcare. I see them often sold like puppy pee pads. Goodness the things we do...but hey they work. [ more ]
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J-Pouch ForumsGeneral Discussion
Another day, another procedure !
JeffsmomJeffsmom
Jeffsmom Lab lover, thank you! How many Labradors do you have? My breed too. Love them so much. Nothing brings a smile to my face like a labrador! [ more ]
lablover Sending good cyber wishes. [ more ]
Jeffsmom Hi Sharon, I was hoping you would call! I'm a complete wreck about this. The surgery was going to be tomorrow, but they pushed it to Friday, which actually is better for me with my dog business. I concerned about how much pain Jeff is going to be in. They are putting the drain in in the OR. I'm hoping they keep,him over the weekend. Not sure how long that drain will be in but that thing better drain our fast. I was surprised the doctor called me personally! I like him, he is very calming and... [ more ]
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J-Pouch ForumsGeneral Discussion
Itchy bottom and hemorrhoid question?
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Thanks, Rachel! For now it's dumb it down, and trial and error to see if I can figure this thing out! [ more ]
rachelraven You may find the itchiness worse because you are not using any barrier creams, truthfully. Certain foods may make itching worse, too. For instance, I avoid them now or eat them sparingly, but when I would eat a bowl of granola (which I love) or too many nuts, things came out like sandpaper, and I'd get tremendous itching from it. Have to go quite easy on those things or I run into that problem. [ more ]
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J-Pouch ForumsGeneral Discussion
What supplies do I need?
crankypantscrankypants
Scott F Although I've never had an ostomy, I was similarly mystified (and a little frightened) when I thought I was heading that way. The ostomy nurse at the hospital was kind enough to meet with me and demystify the equipment and the process. I was much more comfortable after that. Perhaps you could arrange some time to learn about what's coming. [ more ]
crankypants Having not seen an actual bag in person, it's all very mysterious. I have my initial meeting with the surgeon Friday and am hoping to leave with some sense of how the supplies work. Or, more likely, that will happen as you said, in the hospital post surgery. [ more ]
rachelraven I got all of my tips from the nurses at the hospital before I left, and had scripts of course for all the stoma care products. Used skin prep (makes a protective layer on the skin), plus stomahesive paste around the flange "hole," the piece that attaches to you first. Be sure if using a 2 part system (flange and bag) that you get a good "Tupperware seal" between them; once, early on, I didn't and in a public bathroom, my bag just fell off in the stall when I went to empty it, and stool went... [ more ]
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J-Pouch ForumsGeneral Discussion
excessive cramping and spasms
M MDS
Scott F If it's SIBO, the treatment course could be a few months, considerably longer than for pouchitis. [ more ]
Jan Dollar This could easily be SIBO (small intestine bacterial overgrowth). Symptoms are the same as pouchitis without the inflammation. The difference between SIBO and IBS is that antibiotics are needed for SIBO (just like pouchitis). Ask for a course of Flagyl or Cipro. You will know within a day or two if that was what you needed. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Recovering from takedown
aka KNKLHEADaka KNKLHEAD
Pouchomarx KNKLHEAD...sent you a few pm's [ more ]
aka KNKLHEAD Yeah, I think you can wait as long as you want from redo step 1 to take down. For you, it sounds like you could use a good break .. and it is likely you'll feel better and better. Since you take pain meds now, I hope that after a redo you feel well enough to get off them. Obviously, if you need them, you need them! I think I was good to drive three weeks or so from take down, but don't recall it being an issue, and after 10 days out from takedown, no pain meds, I'm sure I will have no issues... [ more ]
CeeeeCeeee I kept my baggie for a full year before having the takedown because it worked best for my work schedule. My summers were opportune for surgery/recovery because I was teaching. Looking back.....more than 10 years ago......I'm really glad I waited. My J-pouch was well healed and I had no issues transitioning to a connected system. I had no problem accepting the ileostomy because I finally felt so healthy compared to the years I lived with ulcerative colitis. In fact, if I needed to have a... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's
R roxy75
clz81 Yes, that seems hasty to just start you up on Humira. From personal experience, when I was in the hosptial last year with an obstruction, they did perform upper and lower scopes (because I was chronically getting obstructions) and came back and bluntly told me I had Crohn's and wanted to start me up on Remicade or something. It was devastating, and I declined right away since I didn't think that was the right course of action. Then a few days later, I get a call saying all the biopsies came... [ more ]
Scott F I'd want to see if a course of antibiotics cleared it up first - just in case it's simply pouchitis that extended a bit beyond its usual boundaries. [ more ]
LisaT If it's possible for you, I would seek a 2nd opinion. I'm not a doctor, but it seems like a quick decision to start Humira. I was on Remicade for 21/2 years after a terrible bout of what my docs decided is Crohn's. After 21 days in the hospital, a microperforation of my pouch, and a fistula, we thought it was worth a try. One of the missing pieces were granulomas. Everyone is different, but I would like more information from my doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
so depressed & confused
skallyskally
skn69 Lots of people do...it is among the fun symptoms and side effects...it could be anything from yeast (the itch) to mild irritation on through to a fissure (a slight crack in the tissue that burns like heck) to an "itis" (cuffitis...)...plus a whole lot of other things.. I would aim for the the simplest solution first and try some topical creams that cool and protect...I used an aloe based gel with built in local anasthetic on my poor angry stoma when it burned and ached...I got it in the... [ more ]
skally Thank you for your responses its real hard - but I keep trying just a couple of of other questions I now get a sensation just inside my anus like when I had uc , like an itchy spasmodic razor blade feeling which makes me want to go - is this right ?? secondly my butt gets wet and makes me sore but no sign of any stain / faetal output, just like a wet mucous - no stool leakage but still spiky & sore - is this normal ? [ more ]
Randers.USA Well said Sharon. And sending best of hopes to skally...hang in and try and stay strong. [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture
M Mark01
Mark01 Thanks and I should have said but ive had it dilated about 6 times before but it wasn't working so we stopped. I'm waiting to see a surgeon but the waiting list is quite long What type of surgery would they do for a stricture? [ more ]
mgmt10 I dealt with a stricture after takedown. I had to have it dilated 5 times on different occasions. You should see your surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
What to do about thrush
SolomonSealSolomonSeal
ks1905 I just got another script for Fluconazole/Diflucan, last time I took it I needed it for over a month. I thought it was my pouchitis flaring up but it was the Thrush. Fluconazole has made a big difference in only 2 days, I'm going to see how I feel after 14 days. I also have stopped Cipro and Augmentin, my new meds will be Entocort and Sulfasalazin. If that doesn't work then I'm going to try 6-mp or a Biologic. Nystatin did not work for my previous cases of Thrush. [ more ]
Jan Dollar Maybe a longer course is what you need. Call your doc for a refill. If a longer course does not work, you may need a systemic antifungal, like Diflucan. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Wits end.
MysticobraMysticobra
Mysticobra Thank you all for the replies and suggestions. I really do appreciate them. It was suggested I ask for an antibiotic. Well.... I had some from a previous problem.... Same problem so I took one and it wasn't three hours all the grumbling and cramping and running back and forth to the bathroom stopped. And as I wake today I am in no distress. I just find it amazing. Coincidence? Could be. I don't know. I am making an appointment tomorrow. I have to let her know what is going on. But as I wrote... [ more ]
mgmt10 What you're describing sounds very much like what I went through when I had a stricture at the anastomosis site. Once I had a series of dilations, it was resolved. A digital exam by your surgeon can tell if that's what it is. Unless it's higher up then a scope would be needed. [ more ]
TE Marie There is something wrong with your pouch or you wouldn't be in such hell. You need to see your GI or surgeon and get their help. Have you tried calmoseptine for your butt burn? It is hard to figure out what to eat and when. Have you tried Imodium and/or metamucil? Is there any other position that you can do, where you work, that doesn't require all of the pressure on your j-pouch? I know asking about that is usually easier said than done. I don't eat much meat anymore but when I do it's... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
J POUCH IBS, OCCASIONAL DIAHRREA
MIKEEYMIKEEY
MIKEEY MGMT10- Thanks again, stay well and continue to do well. God Bless. [ more ]
mgmt10 Pancolitis just means the entire length of the colon is effected. It's still UC. There are different degrees of severity. Mine was severe. I am doing very well now five years later. Knock wood....I have not had pouchitis or any issues. I had a GI dr. who was a firm believer in the therapeutic properties of Pepto Bismal. Hope it continues to help you. As for the cheerios, maybe try a little bit and see how it goes. Who knows, you may be fine with them. Just do it on a day where you will be... [ more ]
MIKEEY MGMT10-THANK YOU SO MUCH FOR YOUR RESPONSE. YOU ARE ANOTHER PERSON TO TELL ME CHEERIOS ARE BAD FOR YOU, SO I WILL DEFINITELY KEEP AWAY FROM THEM AND TRY SPECIAL K, NEVER TRIED THEM SO MAYBE THEY ALSO WILL AGREE WITH ME. I SEE YOU HAD PANCOLITIS , WHAT EXACTLY IS THIS? I HAD MY COLON REMOVED AND HAVE A JPOUCH, HAVE HAD SEVERAL OPERATIONS AND HAVE NEVER BEEN THE SAME , EVEN VISITED THE CLEVELAND CLINIC AT ONE TIME, MY GASTRO DOCTOR HAS TRIED SO MUCH TO HELP ME, AND DOES NOT GIVE UP, WE TRY... [ more ]
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Bill Johnson founded the J-Pouch Group in 1997.

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

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