J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
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 ]
had a few very hard chips come out of bag this morning so hopefully the rest will be passing soon as well [ more ]
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
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 ]
Come on, don't keep us in suspense already! Did you pass it? [ more ]
Hope it's all still passing! (Or already passed!) [ more ]
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J-Pouch ForumsGeneral Discussion
First time my pouch was created I had to use a self-catheter for 3-4 months before I was able to finally pee normally. Also had some ED issues for 1-2 months. So to answer your question, yes it is a real possibility especially since they are hling to be working down around those nerves. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I hate to say this, but your signs and symptoms sound very much like one of my inflammatory arthritis flares. I get increasing joint pain and stiffness, with associated fatigue. I feel like the air I am walking through is not air, but molasses. I get out of breath walking short distances. Sometimes it is associated with increased gut symptoms, but it is not consistent. I don't get headaches though. I already take a biologic and pain meds for my arthritis. When these flares occur I take... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Maybe what seemed to be hemorrhoids is really just skin tags left by old, shriveled hemorrhoids. Those can itch and burn like crazy. Jan [ more ]
I use Balneol cream..it's a cleansing cream and it seems to help. You can get it at the drugstore or online.. [ more ]
HI All, I couldn't take it anymore...I went to my surgeon, and after internal examination, she's put me on Lomatil (2tablets,4x day), since I stopped the Imodium as per my gastrerenterologist. She said that I don't have an abcess, fissure or stricture; my j pouch looks fine. She recommended taking the Cholestyramine powder 3x day (Questran) to help firm the stool. My gastric Dr recommended a CT scan, but she doesn't feel I need one. The only weird thing is that she and her assistant said I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsPouchitis
Thanks. I'm not taking lomotil as things are the opposite for me with the antibiotics. Tried grape juice and always drink lots of water. I did 7 days and came off. Not sure how things will be now as its my first time with combo. I do feel gassy and bloated from them but the pouchitis has subsided. [ more ]
Emptying solutions depend, in part, on stool consistency. If the antibiotics have made things too thick, more water, grape juice, etc. might help, or even a small dose of milk of magnesia. Certainly stop any Imodium or Lomotil. Others will share other remedies. [ more ]
Scott- I am also combining the 2 since Thursday so about 4.5 days in now. Went off Entocort as it was not helping or Cipro on its own. Just finding a bit of nausea periodically and sometimes hard to empty. Hope it continues to help Any suggestions for the emptying? [ more ]
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J-Pouch ForumsPouchitis
J-Pouch ForumsGeneral Discussion
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 ForumsHelp! Need advice now!
To add to what has been said, there really is no way to expedite adaptation. your best friend is patience at this point. Do not expect improvement on a daily basis, but more by weeks and months. Most people see significant improvement in function by the 12 week mark. Some take less time, some more, but not because of something they did or didn't do. Jan [ more ]
Pretty normal for as early on as you are. Try to defer going at times when you can to allow the pouch to stretch. I never needed Imodium or Lomotil or any sort of fiber (Metamucil made things too thick for me), but you might benefit from some treatments to either slow the gut or thicken the stool. [ more ]
hello, it takes time for the pouch to adapt and stretch to its full capacity. It is different for us all. Food wise, adaptation wise. Could be trial and error with seeing what works and what doesn't. You may wish to keep a food diary and avoid roughage to begin with, things like nuts, salads for example and stick to bland diet type foods. potatoes, rice, try a piece of cheese or two, banana's, and peanut butter, baked fish, chicken are also good starters. Protein... Also could you ask for a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
scott, you make valid points. I appreciate it. I take it for everything that is worth. Good words of wisdom/advice. thanks, len p.s -- was speaking out of concern and didnt mean to come off as if i'm making things up. [ more ]
There are enough real problems in our lives that it's best, I think, to avoid making ones up that don't exist. Cipro is partially processed by the liver, but it doesn't damage the liver. Processing things is the liver's job. Of course it's best to avoid medications when you don't need them. And when you do need medication, the choice of which one should be influenced by the various side effects and risks that *might* occur. And if you can, try to replace the worry (which tends to be... [ more ]
i was also given xiafaxin 500 mg for a month at a time. that was the other gastroenterologist. i took a short course of it. it seems like alot of pouchers follow a diet to help with their SIBO issues/symptoms the same goes for Pouchitis cases on here. I have to be upfront and say, i never can commit to a strict diet or adhere to a strict diet. I basiclaly eat whatever i wish. That doesn't mean, though, that i should have SIBO. I'll take the meds the doc throws at me to treat it, its just... [ more ]
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J-Pouch ForumsGeneral Discussion
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Thank you Scott and Fosty! I'm glad to hear it worked good for you both. Keeping my fingers crossed. [ more ]
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 ForumsHelp! Need advice now!
My daughter and I use Medique Medi-lyte electrolyte pills. Very convenient and they seem to work well. Amazon has them. [ more ]
I was told to drink G2 or powerade zero because they have the electrolytes but no/very low calories, sugar, carbs, and fat. I like plain water so I now drink the propel plain water with electrolytes. It's new and kind of high where I live so I don't Get those as much as powerade zero. They said if you drink plain water to have a salty snack along with it. [ more ]
Great news! Be careful with the magnesium, as it tends to cause diarrhea for some. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks for understanding, Len. Online conversations can be difficult, and you are so right that we have no idea what someone else's mindset is. Being a nurse, I try to be frank, yet gentle, but sometimes I fail completely. This is particularly true if I am in a hurry (but no excuses). So, all I can say is that I'll try to do better, and hopefully folks will give me the same benefit of the doubt I give them. That said, every positive move you make to improve your health is worth doing. When... [ more ]
jan, thank you. i have to admit i was feeling un-easy and a bit upset concerning not knowing how you meant the burger comment. Thank you for comming back in the thread and clarifying what you exactly meant. i get easily offended sometimes. and it does not help when we are emotional already and have some health fiasco issues/family stuff. (away from the board, no one knows underneath us our personalities, how we take in what someone meant or said in context, sometimes taking it out of context... [ more ]
Sorry, didn't mean to offend. I don't think I was clear enough. When I said you may as well eat a burger, I was responding to your comment about eating before taking the MOM prep; indicating that if you were not given a special prep diet for your scope, there is no reason not to eat what you want. I was not trying to be flippant about your general diet for health. I do understand how difficult it is to change old habits. Both my husband and I have been dealing with it for decades. Even if... [ more ]
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J-Pouch ForumsOstomy & Skin
Thanks for all of your replies. My surgery was just set for 8/31 and it's just for a permenant end ileostomy. All of your positive replys have made the decision easier. I told my surgeon that things are so bad I would even take my temporary stoma back. I had a very difficult time with it. Dehydration problems kept me in the hospital for 16 days after my first surgery. Thanks for asking the questions AllyKat. I hope you are feeling better. [ more ]
HI Allykat I think I have had much more freedom since having my ileo - I'm much more able to do things and live an active life. I was toilet bound before and quite limited which was much worse. I think you'll find that you settle into a routine and it will get easier. I hope you find that. [ more ]
Hi AlyKat - I promise I'm not stalking you around the group! Thanks for asking questions that I want to learn about too. Thanks for your helpful replies PoucherinTO and liz11. I'm trying to be proactive as an ileostomy might be in my near future as well. [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
hey buddy, hows it going?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
hey jan, thanks for all of your words of wisdom again, and general input on things as they are with me. i have not increased activity at all and am not moving much, honestly. Especially that we've been in a heatwave the past week again (feels like 100 degrees etc). I need to look at how much im taking in portion wise on my carbs and try and control it. I have some control of how much i put on my plate. Rationale wise, it is up to me, and only *I* can make that change, but i have to be ready... [ more ]
If you have recently increased your walking activities, your extemity pain is likely related to that. Don't stop, just take time for some stretching before and after. But, if this is chronic, talk to your primary about a rheumatology consult. The number one thing you can do for your diabetes control is reduce your carb intake. This will also be good for pouch function, since many people see improved pouch function with a low carb diet. Try to keep it simple and easy. Start with eating half... [ more ]
jan, i appreciate your words of wisdom as always. I will push for vitamin check, a more thorough over see of my care in the lab department could be crucial/essential at this point. my PCP is a health center/clinic and often if i dont mention something, it can easily get swept under the carpet and i end up "under seen". she is a nice doctor, bed side manner wise, but has not been in medical care practice THAT long. 12-13 years at the most she has been a physcian. My previous PCP prior to 9... [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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 ForumsFAP Forum
J-Pouch ForumsGeneral Discussion
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 ]
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
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 ]
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 ForumsHelp! Need advice now!
Yeah, bladder infections are pretty common, and definitely increase your misery. Hard to sort out the sensations when everything is on fire down there! Typically you'd get urinary urgency, frequency, burning, and possibly cloudy and/or bloody urine. But you don't need all the symptoms. your resistance is low after illness and surgery, and being in the hospital is the #1 place to get an infection like this. A little blood work and urinalysis should rule it out or in. Jan [ more ]
Thanks so much jan, that's made me feel better, I'm hoping it is all down to needing to be connected up, I'm seeing my consultant on the 24th of this month fingers and toes crossed that thy can give me some answers and help! The other thing is was reading could I have a bladder infection?? My symptoms are some burning when I urinate but very slight, no urgency to urinate or feeling like j need to rush back to the loo, but I have lower abdominal and lower back pain, and rectal pressure which... [ more ]
Could be diversion pouchitis or cuffitis. Diversion colitis is technically in the colon (which you don't have). So, depending on how biopsy specimens were identified, the resulting diagnosis can vary. Even without biopsy pathology reports, the doctor's dictated report could indicate diversion colitis simply as a "blanket" diagnosis, which is inflammation that is caused by fecal diversion, not that caused from an inflammatory resonse to bacteria. The difference is that diversion pouchitis is... [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
Keep a thick layer of barrier cream on at all times. Also, have you considered a bidet? [ more ]
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
J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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
Thank you for the responses and suggestions. [ more ]
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 ]
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 ForumsPouchitis
J-Pouch ForumsHelp! Need advice now!
Metamucil has served me well since my surgery, but some report unaceptable increase in gas or volume of stool. [ more ]
In my experience it works if there's no pouchitis. In that case it helps in emptying, "thickening", reliefing, and slowing down the transit. If you have pouchitis or bad digestion, probably it helps but results are less evident, and probably it increases your bathroom trips. [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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
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
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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 ]
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
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 ]
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 ]
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
It's built up scar tissue near the fistula/seton. [ more ]
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 ]
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 ForumsHelp! Need advice now!
Ok today I didn't take the multivitamin and surprise watery already subsided (I still have diarrhea), BUT it's also the second day of Flagyl! I was sure that I couldn't clear out this thing... I should have waited to take the Metronidazole, but I didn't tolerate the watery thing anymore... Any case MAYBE I will cautionly try to take the multivitamin again (after bloodwork) in the next day, if again diarrhea, well... And I think that it could be the magnesium. [ more ]
Ok, I'm at the second Flagyl pill (3xday), already have a very light start of headhache (as usual) and still did not notice the metal taste but it's arriving. Hope the watery stuff subsides soon. I decided to take the multivitamin after lunch so if Flagyl works, I rule out a possible mulitivitamin intollerance. BTW I'm still looking for the best mantainance treatment when off (hopefully) antibiotics: I'm planning to follow the antigluten anticasein diet for some time, then when the pouch is... [ more ]
Scott the fact that I begun today Flagyl... If I keep the multivitamins I will be sure if Metronidazole has worked or not. [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
I find that a half dose or one full teaspoon of metamucil works best. The full dose causes too many bathroom trips. [ more ]
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
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 ]
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 ForumsOstomy & Skin
I think a colorectal sirgeon should be seen. I travelled 12 hours to Cleveland clinic for surgery for the ostomy and will do the same for the j pouch removal. ininderstand the financial situation. I would find a good colorectal surgeon in your network Or as allykat stated talk to your dr about billing issues. [ more ]
Lori, I would talk to your old doctor especially since you have been with him so long. Maybe they can bill thru another doctor in the office or work out something else. My doctors have worked out things with me I don't know how I would feel about a pelvic Surgeon. I guess you could always head to NY or Cleaveland. Maybe John Hopkins would be closer? I know when you feel awful having to travel to interview a surgeon Is such a pain. [ more ]
Starry-I need to change doctors b/c my old colon/rectal surgeon is not covered by my insurance so I have nothing scheduled yet. I was going to say screw it and go to him anyway but after 2 outpatient OR trips that only lasted 1 hour each, I owe at least $8000 with the bills I have so far. I am 41 years old and he has been my doctor since I got my colon out at 18 so I feel like I have just broken up with a long time friend. I tried to use the colon/rectal surgeons associated with my hospital... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Personally, I would opt for the j pouch since it has I high success rate and can provide a near normal lifestyle. Granted there can be complications, but that can occur with any option for your condition. You may want to look into a k pouch or BCIR that are options to an ileostomy that avoid the need for an external bag. Best of luck with whatever you decide to do. [ more ]
Thank you all so much for taking the time to read my post and reply. I know that everyone has a different experience and will each deal with things a little differently I am just stressed even thinking about such a big life change again. I have grown completely comfortable with my ileostomy over the past 3 years and am just afraid to change something that is working for me even though I know I will have to do something to remove the remaining tissue whether I go with Jpouch or the permanent... [ more ]
Dani, there have been lots of discussions here on this topic that you might be able to find by searching. This is a fantastic place to come to find out what can go wrong, but not such a good place to hear from the folks who've done well (the large majority). They have no use for a support forum. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I went swimming in a creek visiting our son. I didn't wear nothing extra on my bag. Just my one piece swimsuit. Did great. [ more ]
good question! My 16 year old stepdaughter just had step one of her jpouch surgery 2 weeks ago. She has done so well adjusting to the bag. Getting it wet still freaks her out though. [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
Thanks everyone. I will try going without coffee (ouch!) and Citrucel. I will also talk to my GI guy about switching the Cipro... [ more ]
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
J-Pouch ForumsK-Pouch Korner
I so agree... Been there, been hurt badly...not much that I could do about it...I was always told that I need them more than they need me. It is crappy but it just is. Sharon [ more ]
Opinion 8.16 - Substitution of Surgeon without Patient's Knowledge or Consent http://www.ama-assn.org/ama/pu...ics/opinion816.page? A surgeon who allows a substitute to operate on his or her patient without the patient’s knowledge and consent is deceitful. The patient is entitled to choose his or her own physician and should be permitted to acquiesce to or refuse the substitution. The surgeon’s obligation to the patient requires the surgeon to perform the surgical operation: (1) within the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
This probably was not pouchitis at all, I suspect, but rather this problem "maturing." Good luck! [ more ]
So my 'pouchitis' seems to have cleared up on it's own (does that even happen!?) and now I have woken up with a tender pea-sized lump beneath the skin surface down there. Considering I have an existing minor RV fistula (more nuance than problem) that started with cyst-y growth, I'm not optimistic about this. Sigh. Thanks for your responses. [ more ]
I Agree. Probably pouchitis. That's where my j pouch hurts as well. I thought I had something wrong with my tailbone at first! Lol. [ more ]
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J-Pouch ForumsGeneral Discussion
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 ]
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 ]
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
I emailed my old GI and he says he's happy for me to come see him. Thanks for the replies! [ more ]
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 ]
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 ForumsHelp! Need advice now!
The force-feeding of castor oil was the favored method of torturing political dissidents by the 20th century Italian fascist leader, Benito Mussolini. Today, the Italian terms manganello and olio di ricino , even used separately, still carry strong political connotations (especially the latter). These words are still used to satirize patronizing politicians, or the authors of disliked legislation. They should be used with caution in common conversation with Italians. The terms Usare l'olio... [ more ]
Jan, I'd almost succeeded in forgetting about castor oil, and now you've rekindled the memory. . I have never put anything else in my mouth as vile as that stuff! [ more ]
I think that the fact that you basically are just taking a "swallow" of MOM, there isn't much point in having a bunch of flavors. It is pretty much benign tasting (like Maalox); not like that vile castor oil I used to have to take for a barium enema x-ray. Concentrated should be fine. Just don't exceed a normal dose. Jan [ more ]
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Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
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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Jan Dollar R.N.
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