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J-Pouch ForumsHelp! Need advice now!
Partial Blockage?
ATXGuyATXGuy
ATXGuy Awesome! Just what I want, problematic adhesions! Kidding aside, thanks Jan. I'll see what the good Doc says tomorrow & keep my fingers crossed it's a one time thing. Sucker's painful though. [ more ]
Jan Dollar Probably one of those episodes of kinking. The trapped gas was probably the source of the severe pain. Once the kink relaxed and the gas allowed to pass through, the pain is relieved, but soreness remains. My money is on your surgeon finding little to nothing tomorrow. Would it comfort you to know that the stoma site is the most frequent site of problematic adhesions? Probably not... Sounds like you did and are doing the right things. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Major pressure
S Sonja6
Sonja6 Biopsy results came back with no malignant areas. So still no resolution. Still in horrible pain. While at a follow up for another issue (another complex ovarian cyst) the OB located a abdominal fluid buildup but stated this is out of her area. Called GI office to inform them of this. I'm supposed to get a call back in the morning. Could and would an abscess cause a fluid buildup? How does it show up on imagining? [ more ]
Sonja6 I was able to make it through the night but it was rough!! I was could actually semi comfortably move around then as soon as i got some food in my system i was down for the count. It seems like when my pouch is empty its not as bad. But as soon as it gets anything in it i'm down for hours! Sitting is by far the absolute worse!! Have a call into my GI. Waiting to hear back [ more ]
Jan Dollar I would not wait until night time to go to the ER If your doctor's office is closed. Go to your primary doc or even OB, or urgent care. I went in around noon for an urgent care visit to the surgeon (had to see the on-call surgeon) and we were up past midnight in interventional radiology dealing with this, and it turned into a 12 day stay. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diet help!!!
MG Mikayla Greenway
*Zoe** Hi I find that I can eat most foods but do avoid the following as I am aware they can cause blockages: Peas, beans, lentils, pulses, sweetcorn, String vegetables e.g. runner beans Jacket/new potatoes with skin, mushrooms Make sure you drink plenty of fluids and include extra salt in your food. I hope you recover well [ more ]
Mikayla Greenway Thank you both for you reply, very much appreciated. I find i can tolerate banana and rockmelon ok but other fruit does not seem to go down to well. pumpkin and carrot seem to also be ok on my atomic if cooked very very well. I have had a look in the section you where talking about and found it very help full so thank you! I have alway had a very healthy diet with lots fruit and vegetables but i am glad to here that you can still lead a very healthy life with limited amounts. Congratulation... [ more ]
deweyj under the information tab, there is a file dietary guidelines i would refer you to that. it will vary from person to person, but that list will help you delineate types of food. binding foods, like rice, bananas, potatoes will help solidfy your stool, as will using a fiber supplement, like ironically the well known laxative Metamucil. i have heard Citracel is more purely soluble fiber than Metamucil so you might give that a try. additionally while it would be simply to take a Metamucil pill,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Four weeks after j pouch surgery
*Zoe***Zoe**
*Zoe** Sorry I didn't mean to post so many! :s [ more ]
*Zoe** Hi Sharon, Thank you very much for tor reply and experience. I thought it could be a water infection but I don't seem to have any other symptoms. I will do as you said and try the cranberry juice for a few days to see if that changes anything. I am looking forward to take down. I know it won't be easy but I am looking forward to feeling more normal I hope you stay well and thank you again. [ more ]
*Zoe** Hi Sharon, Thank you very much for tor reply and experience. I thought it could be a water infection but I don't seem to have any other symptoms. I will do as you said and try the cranberry juice for a few days to see if that changes anything. I am looking forward to take down. I know it won't be easy but I am looking forward to feeling more normal I hope you stay well and thank you again. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible hernia blockage behind stoma incision
J'd upJ'd up
J'd up The final diagnosis on paper was a spigelan hernia. However, after speaking with a few surgeons and doctors I convinced them that it was most likely caused by adhesions. And they all agreed that it was a good chance that's what it was. So we don't really know exactly. But everything went away on its own. Massaging it also helps. In my ten years with a jpouch it only happened this one time. Sometimes I feel that I know my body and can diagnosis myself better than the professionals. Sometimes... [ more ]
Shainy any udate J'd up? I think I am in a similar situation although maybe not as bad. I have a small Spigelian hernia by the old stoma site. I get a bit of bloating and discomfort when stool/gas passes through there but I have just been putting up with it. I find putting my hand over the stoma site area helps things pass through easier and relieves tension. The surgeon says that as I am very active it could get worse over time and its worth just getting it fixed now. I am a bit nervous that the... [ more ]
J'd up Thanks for everyone's input. The update is that my pain has lessened significantly. Although I can't feel the hernia, I know that there's still a blockage. I feel it when the food gets to that general area. For the meantime I'll just keep pushing and massaging away and keeping a heating pad on it. My goal for now is to avoid surgery. I've also been drinking prune juice to keep the bowels flowing. I'll update this thread as I go along. Hopefully it helps someone in the future with a similar... [ more ]
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J-Pouch ForumsHelp! Need advice now!
has anyone ever had to have apart of their intestine stretched
M maddie18
deweyj I have two strictures, one mid pouch and one just above pouch entrance. i have had these dilated for the past 5 years. typically the dilations are quarterly but were initially 6 months apart, but theyve also been shortened to as few as 8 weeks apart. it works, it has kept me out of the hosptial for obstructions. well the dilations paired with adding methotrexate to my weekly humira. my dx changed to crohns about 9 years ago. the obstructions from the strictures became the obvious sign. i do... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Night time (and day time) stool incontinence
L Lionel
Scott F There's no perfect test for pouchitis. I would try a course of Cipro to see if it helps. [ more ]
Lionel I should mention that I have had some success in using COMFORTS BABY WIPES. I put one between my "cheeks" before I go for a walk and it seems to help the stool incontinence a lot. I know this may sound gross but this is one of the very few things that have given me some comfort while exercising, or working out. [ more ]
TylerDurden Lionel, Have you been in touch with any major hospitals? Everything turned around for me once I left Grand Rapid, MI (my home town) and got a referral to the Cleveland Clinic. Even before that I was at the University of Chicago but they did nothing like what Cleveland did. The staff places such as Cleveland Clinic, Mayo Clinic, etc have are second to none. It was well worth the drive, flight, time off of work, $ and hassle. I highly recommend you talk to your GI about getting into a hospital... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diet help?!?!
S stryker
Jan Dollar I am with Scott and urge you to avoid comparing your new function to what you used to think as "normal." Focus more on how you feel than how often you poop or what the consistency is. If you slow things down too much or make it too thick, you are likely to promote excessive bacterial growth and pouchitis. I have been at this since 1995 and I honestly could care less how liquid my stool is, as long as I am continent and do not have urgency associated with it. At first, I was sort of obsessed... [ more ]
skn69 Styrker, It all depends on what your other goals are too... Are you looking to gain or lose weight? More energy or do you do a stay-home job? I have a little mathematical formula... 1 Carbs (potatoes, pasta, rice, bread products, cakes, pastries, bagels, couscous, sweet potatoes...) tend to stick to your guts and thicken things up (and make us gain weight generally) 2 Proteins (meat, fish, chicken, eggs, cheeses, tofu...) tend to remain "thinner', run through faster funny enough and fill you... [ more ]
Scott F You might have an inappropriate goal. A "normal" BM for a J-poucher is roughly the thickness of pudding, there's no need to hit that target exactly, and the consistency isn't very important as long as you have no urgency. That said, Metamucil or Citrucel with meals might thicken/bulk your stools to a consistency you prefer. Be careful not to thicken your stools so much that you have to strain on the toilet, though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
surgery
Becky18Becky18
Jan Dollar I am a nurse, but retired, so I see your concern. There are plenty of nurses who do work full time on biologics. But, that is a personal choice. Biologics were not even available when I had my surgery and other immune modulators (Imuran, cyclosporine, etc.) were in experimental stage. I had colectomy because I was in a severe flare that did not even respond to high dose prednisone. I wound up in surgery on 80mg/day, which was not a good thing. That said, do not have surgery solely to avoid... [ more ]
Scott F I had my surgery electively, and I have no regrets. Also, we have a few working nurses here who are on biologics. So far (unless I missed it) we haven't seen any reports of infections that seem to be biologic-related. [ more ]
Emmyschmemmy I elected to have the surgery after trying so many different medications with little to no improvements in my UC. There were a few other biologics I could have tried after taking Humira for one year, but I had pretty much given up hope that anything else would work. I really wanted the surgery and the timing worked out well with insurance, employment, and all the other various factors that went into my decision. All that being said, my j-pouch is relatively new (4.5 months) and though I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Joint Pain
L LisaPT
ZUPPSS Extraintestinal manifestations of IBD are not uncommon. I also had joint pain which presented and resolved. For a period of about two years it was very severe and, after trying Tylenol, and Celebrex, I was treated with remicade and methotrexate. I suggest that you see a rheumatologist to rule out other causes and agree on a plan of treatment. [ more ]
Jan Dollar I am with Scott. Maybe it is IBD related, maybe not. From what you describe, it is impossible to tell. Inflammatory arthritis has many causes and is difficult to diagnose. Osteoarthritis is very common and can occur in conjuction with inflammatory arthritis (I am an example of that). IBD related peripheral arthritis tends to coincide with the bowel disease. If you have a concern, ask for a referral to a rheumatologist to sort it out. Jan [ more ]
Scott F Lisa, while the joint pain you are developing 23 years after getting your J-pouch *might* be related to your inflammatory state, it could also be "ordinary" osteoarthritis. Lots of people without autoimmune diseases develop such arthritis, and even though it's common it hurts plenty. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding!! Why??
J John1
Scott F Pouchitis usually doesn't cause a fever. [ more ]
John1 Hi! I have som symptoms. Not so much blood anymore, but occasionally it happens. After summer I have got some new symptoms. I doesn't feel sick or anything and my work and daily life haven't changed. But I have a much more urge to go to the bathroom, more than before, and have to go when i feel the urge. Sometimes maybe to-three times a night. And more when I am at work. It sounds like the symptoms of a pouchitis, but doesn't have any fever. I feel kind of nauseous in the morning sometimes. [ more ]
Ikh John don't worry too much about it, I was worried before discovering that actually bleeding, although not common, happens quite often with j-pouchs. What other symptoms do you have? Do you have chronic pouchitis? I have a form of light pouchitis (thanks god) but it doesn't make me feel too much sick, I just take antibiotics once a month. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemorrhoids? Butt burn? Belated Questran?
EmmyschmemmyEmmyschmemmy
Emmyschmemmy Hi Hockadoo, I assume that it is different for everyone, but in my experience, the Questran kicked in right away. I noticed significantly less butt burn the day after taking my first dose. If you take it religiously before every meal, it should work consistently to eliminate butt burn. I've been on it for three months (my j-pouch is 4.5 months old) and there are still times when I have a burning BM, but those are the times when I've slacked on taking Questran. Good luck! Emily [ more ]
Hockadoo Hello all - Hope you can help me with a question. My surgeon just got put me on Questran (wish this had happened much sooner). How long does it take to kick in and I notice a difference? I've only done four days. Thanks. AND MEGAN: Welcome to the wild and wacky world of J-pouches. This chat room/forum is a major source of information, knowledge, experience and compassion. Good luck. [ more ]
Emmyschmemmy Hi Megan, I followed the suggestions of Scott F. above (thanks, Scott!!!) and definitely recommend asking your doctor about a bile acid sequestrant (Questran). Once I started religiously using the Questran before eating, my butt burn pretty much disappeared. I still have small bouts of it (I'm now almost 9 weeks post-takedown), but it's not nearly as bad as it was in the beginning. The occasional times that I do experience it, it's mostly just burning coming out, but the skin is not burning. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch
GypsyGypsy
Scott F That's great news, Gypsy! The Metamucil wafers have a fair amount of sugar. If that's a issue you could try Metamucil capsules or (probably better) Konsyl powder. Konsyl is the same stuff as Metamucil, but without the sugar or flavoring. A bit gritty, but I use it twice a day (though I mix it 50:50 with Metamucil). [ more ]
Jan Dollar Good news indeed! Hope it lasts. Jan [ more ]
Gypsy Hi Jan and Scott, sorry I haven't gotten back to let you know how I made out at the doctors that Monday. My computer isn't working right and I haven't been on it . The doctor did the scope and said there was minor irritation but the pouch was good. He gave me Cipro for ten days and said to call if I continue to have problems. Well I have improved greatly. I don't have pain, discomfit, or accidents like I use to. I can't believe it. I am waiting for the other shoe to drop as the saying goes. [ more ]
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J-Pouch ForumsHelp! Need advice now!
skin tags?
L LisaPT
Jan Dollar I'd see what the surgeon says first. Jan [ more ]
Ljz I may have a skin tag, though I'm not sure. Saw my gastro for what I was thinking was an internal hemmeroid, but he couldn't really find it and thought it was more likely a skin tag. It large and bulbous, and becomes larger, more pronounced when I push to eliminate. Bleeds a lot. Protrudes at times, but not always. Does this sound like skin tag or hemmeroid? I'm not sure how to tell difference. He said he wouldn't recommend doing anything to remove it nor did he think my CR surgeon would... [ more ]
CeeeeCeeee I have anal skin tags and have had them since I had my takedown in 2002. I have never considered having them removed. The only challenge I've had is in keeping them VERY clean. The itching is caused by seepage/leakage and not cleaning the area thoroughly, according to my surgeon. So, I use wipes when out and my bidet when home. I rarely have an itching problem. If I do, I use a barrier cream to keep the seepage away from the tags......even putting some inside the anal opening....because one... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage? Stricture?
C ColoradoCarrie
ColoradoCarrie Great, thanks for your replies! [ more ]
clz81 Totally agree with Jan! My GI said he would definitely not do the camera endoscopy when a blockage/stricture is a possibility. [ more ]
Jan Dollar One issue you need to seriously consider is that if a severe stricture is suspected, the camera pill endoscopy could lead to a rather urgent bowel resection to retrieve the device if it becomes lodged in your GI tract. That said, you may be headed that way anyway, and the camera pill endoscopy could identify where the narrowing is. The MRI could also show the narrowing if it exists. Still, the end result would be surgery if a narrowed area is found. The difference is that the surgery would... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch 1 1/2 yeras
BA Bill A
CeeeeCeeee "An apple a day keeps the doctor away!" Have a feeling this meant it kept us "regular" and free from constipation. Well, I have made it a habit to eat one apple a day.....skin and all. I notice a real difference on days when I can't get my hands on an apple! [ more ]
Bill A Thanks can you tell me how many a day does he eat? Thanks Originally Posted by lablover: My husband eats bananas regularly. He takes VSL religiously. Other than that, he eats what he wants within reason. ? Thanks [ more ]
Bill A Thanks I have begun to reduce dosage while improving diet and vsl3- Can you suggest any vitamins good to take? I take D3,fish oil and multi vit [ more ]
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J-Pouch ForumsHelp! Need advice now!
DOES METAMCIL HELP DIARHEA
bederyparisbederyparis
rachelraven I never needed Metamucil, etc. but when I tried that sort of stuff in the beginning, because they told me to, it just didn't work for me. Give Citrucel a whirl, maybe, to thicken your stools, some people like it better (I, too, don't say "diarrhea;" better to say "loose stools" if not ill/with urgency... I get picky about that, being a nurse). I actually prefer looser stools... Easier to get out. I'm continent whether liquid or other, though, and rarely get irritated/butt burn. [ more ]
Scott F I suggest you try it and see if the effect improves things for you. If Metamucil give you gas, some people prefer plain psyllium, or Citrucel, or Benefiber. I've been happy with Metamucil for years. I prefer to reserve the word "diarrhea" for watery stools with urgency. If there's no urgency the consistency of the stool is much less important, and most J-pouchers are best off with a soft stool consistency, a bit like pudding in thickness. That minimizes any straining to poop. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Not sure if the J Pouch is right for me
J judyk
TE Marie Sorry you are having such a horrible time. You should see your doctor and also get something to help with your pain. There is no reason you should suffer so much. [ more ]
Scott F Judy, you might be dealing with an anal fissure (the "razor blades" description is very typical). They can be treated with sitz baths, nitroglycerine, nifedipine, and/or Botox. It's important to keep the stool consistency soft. What has your doctor said about it? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advice
M Mei
CeeeeCeeee Suggestion: If you like spicy foods go right ahead and eat them. BUT......soon after eating them get your barrier cream.....I use Calmoseptine......and slather it on your anus. I even put a little inside. Keep doing this until the culprit food is out of you. Why experience "butt burn" if you can prevent it from happening in the first place! My surgeon recommended this! [ more ]
Scott F Mei- People here have worked out all kinds of diets for themselves. The truth is that most J-pouchers don't need much change in their diet. You might find foods that give you trouble, especially early on, and especially if you pig out on something, but it's more likely that you won't. Most J-pouchers don't get blockages, and most blockages have very little to do with your choice of food. If you find that you're having problems, sometimes a change in diet can help (but even then it may not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
longevity of JPouch
L luckyrabbit
AKT2 Talking about noxious fluid burn...is this the same thing as unabsorbed bile? After my total colectomy, I had open oozing sores...worst butt burn imaginable. CR surgeon prescribed whelcol to absorb the bile and poof...things got better very quickly. I have to be very careful as the whelcol also slows motility...different nightmare. [ more ]
rachelraven One of the theories about increased numbers OF inflammatory bowel disease is excessive hygiene that kills off natural flora, and over cleanliness of everything (food, etc.), leaving us susceptible to these conditions and the wrong kinds of bacteria, since the good gets killed off. Not the sameexactly, but as a teen who played hockey, my hubby took many showers. Too many. He killed off too much skin flora and actually had excessive back acne take over. His dermatologist made him take no more... [ more ]
Alkovitch "Not sure how one would get "re-entry" of microorganisms back inside, when the anatomy there really acts as an exit-only, naturally." Every body consists in a large part of a seething mass of microorganisms in a dynamic and reciprocal relationship with each. The end of the anastomosis is a 'boundary' but not a total one. It only prevents major leakage, not minor or miniscule or micro exit of fluids and bacteria. At the the quantum level the whole body is in a holistic/hologram relationship. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bowel blockage
C Crystal<3
Elisa W I agree about NG tubes! It was one of the worst experiences of my life. My surgeon has been so understanding about helping me avoid them after the first time I had one. The last time I went to the ER for a blockage they gave me Zofran and morphine, which got me through till it passed. I hope yours has already passed. [ more ]
CeeeeCeeee If you can tolerate it, hanging upside down or standing on your head.....as much as possible.....sometimes puts things back in place. I usually hang over the side of the bed as upside down as I can get. When nothing I tried worked I went to the ER. They admitted me and my colorectal surgeon did deep abdominal massage on me daily....four days.....which about killed me it was so painful. But......I avoided surgery. My twisted small intestine untwisted four days later. Meanwhile, morphine was... [ more ]
Jendejulio I've had one blockage and think I've prevented a couple others by walking, walking, walking. NG tubes suck!!!!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
JPouch and beta blockers
M maryloar
Jan Dollar There are other meds besides beta blockers for atrial flutter, and that can be sorted out. My point about not stopping the beta blocker abruptly is that you don't know if it is the drug or poorly controlled atrial flutter, which can also cause fainting. Hopefully you get some answers tomorrow. Jan [ more ]
Scott F Jan's point about not stopping abruptly is well-taken, but you may have to make a judgement. Hopefully you can get a prompt call-back from your doc, and not have to decide on this by yourself. Passing out is a Big Deal - when you fall you can break all kinds of things that you'd rather have intact (hip, head, ...). Good luck! [ more ]
Jan Dollar I've been on metoprolol for years without issue, but I don't have reduced kidney function. With serious kidney damage you may need far less of a dose for the same effect. But, since it is metabolized in the liver, that probably is not the case. I would not advise you to stop it abruptly, but call your doctor and report your symptoms. He put you on the beta blocker for a reason, and that reason may be more important than the side effects. You probably need to have some other treatment if you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
College and a jpouch
N newpouch
newpouch Homework definitely got the best of me tonight!! but thank you so much! I'm so grateful that there are people out here like you who give such in depth responses and give me a lot more hope than I originally had, wishing you the a double best [ more ]
LORI726 Oh yeah...and I almost forgot....stay hydrated!! Always have a bottle of water on hand...We colon-less people have to keep the fluid intake coming!! [ more ]
LORI726 I forget that college kids are up late!! I work 7 on/7off night shift as a pharmacist and I start my week tomorrow night so that is why I am up so late!! Hahaha. This probably isn't even late for you!!I am having some issues but I was re-diagnosed as having Crohn's 5 years ago so that really mixed things up for me. That being said, I would do the J pouch again in a heartbeat. I don't know what the fate of my pouch will be but you are way too young to worry about that! AND everyone's story is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
emergency surgery
LK Laurie K
skn69 So glad that you are ok now Laurie, That sounds horrible... No, I have never heard of the space but like Jan I have had problems with the cul-de-sac of Douglas (I think that it is the same space)...sterile abscesses and whatnot. Take good care of yourself and go slow... Sharon [ more ]
Jan Dollar It sounds like what you had was a small intestinal volvulus. This is where the bowel twists upon itself, cutting off the blood supply and causing gangrene. Anyone who has had abdominal surgery, especially intestinal, is at risk. That said, it still is not common. I don't know about a space being left open or not, but there is a "potential" space behind the pouch, called the presacral space. It is where fluid collections and abscesses can form (happened with me). I am so glad you are OK now! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Are these early RA symptoms?
ATXGuyATXGuy
Ikh Hey RA is only one form of a plethora of arthritis and it has got very precise diagnosis (bloodwork must have some distinct values!) so you don't need to think about RA only because of your joint pain! You could have just a form of sporadic arthritis caused by ibd (sort of common issue for us), or just some joint pain that is entirely not arthritis. I know some people with RA, in the acute days they can't even walk or stand up. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch Bleeding
H Hoping
Ikh I wouldn't make the test, just I'd do if antibiotics and cauterization wouldn't work; and ask a second opinion if it doubts for crohns, at present doctors (which I don't consider good doctors) are very "easy" to mark with the word "CROHN'S" every pouch related problem. In many cases is just pouchitis, and I am sure yours it. Be informed, find posts on google using this search: site:j-pouch.org and find the descriptive studies of pouchitis you will find that pouchitis comes in a moltitude of... [ more ]
Scott F I'm glad you were able to get the bleeding dealt with. A fair number of folks who'd always been told they had UC have been surprised by a possible (and sometimes even actual) Crohn's diagnosis. The tests to distinguish them aren't very reliable. In any case, even if it's definitely Crohn's, or maybe Crohn's, Crohn's can run the gamut from no problem to a big deal - not all cases are troublesome. There are a variety of good medications for Crohn's in 2015, and not everyone with Crohn's needs... [ more ]
Hoping Thanks everyone. The scope on Tuesday showed the ulcer was on a blood vessel. You were correct!! The Dr. recauterized again SO hopefully this will do it. NOW he wants to test for Chrohn's even though I have been told UC all these years. Has this happened to anyone else? what happens if it is Chrohns? I have taken a few weeks off work to try and recover. All input and advice is appreciated! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dothiepin??
V van
van Hi Jan, Thanks for the reply. I have been on colese with little effect so he wants to give this a go. I am super reluctant due to potential side effects but he assures me 25mg is a small dose. Guess I.ll see how I go :/ [ more ]
Jan Dollar Dothiepin is a tricyclic antidepressant, similar to amitriptyline which is commonly used in the US for IBS/IPS. It can reduce your awareness of gut sensations so you perceive less pain. It works very well for some. You just need to be alert for side effects with long term use. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
JPouch + severe stricturing
L luckyrabbit
LORI726 Hi! Somehow I totally missed your last post or I would have responded sooner!! So I went out to Cleveland Clinic this week and spoke with colon/rectal surgeon, Dr. Gorgun. I didn't choose him for any special reason...just was able to get an appointment quickly with him. He is recommending I get a temporary ileostomy to let everything quiet down and help regain some strength/quality of life. He said I am not ready physically or mentally for removal of pouch and getting rid of rectal region... [ more ]
luckyrabbit thanks for the reply. I wish you great success and am right behind you to get to the Cleveland Clinic. I can no longer put myself or family through this shitty quality of life. My biggest concern is also if I will continue to have issues after I get a bag. I am also concerned about how much of my small intestine is still usable, I have at least 3 known active strictures. I am trying to expedite a visit to CClinic and hope to get answers. Good Luck my friend, I will reach out if I find a... [ more ]
LORI726 Hi, I have had problems with strictures in the past. I have had my J pouch for 23 years. I had surgery to remove a structured portion of small intestine, had multiple scopes to try to open up strictures in past, and lastly had bottom end of pouch re-done b/c stricture/fistula. My diagnosis was changed from UC to Crohn's about 4 years ago. Now I am having all kinds of problems with fistulas/abscesses/setons. I am going to be going out to Cleveland b/c my GI doctor says I should get another... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fissure and Botox update
T Twilight
Jan Dollar Sounds good. Fingers crossed that this holds up. Jan [ more ]
Twilight Update - I had the Botox injections around 3 weeks ago and as of today I believe they have helped, barely have had any fissure pain and haven't had any leakage. The injections themselves were not as painful as I thought, 3 quick little stings and done. Hopefully I will not have any more problems with the fissure. [ more ]
Twilight I have an appt scheduled on the 31st, I'll let you know. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Finding a Doctor
ChrIssy25ChrIssy25
misk I am not sure who is in his office. I only go ones everyother year. I live in Page az. The other end of the state. They can problem refere you to someone if they dont. TRI-CITY COLO-RECTAL SURGERY 2223 E Baseline road, Suite A GILBERT, AZ 85234 480-835-5302 Good luck. Hope this helps. [ more ]
Jeffsmom What about The Meyo Clinic? By the way, I love Phoenix and will be moving there in a few years. What part of Metro did you move to. We will be moving to the Apache Junction area. I love it out there. [ more ]
ChrIssy25 Thank you so much! I really appreciate the excellent recommdation. Does he work as a team with a gastroenterologist and an internist or primary care dr you'd recommend? I am so thankful for you taking the time to contact me. God bless! Originally Posted by misk: Dr vankatesh in Mesa. He did my j pouch in 86. He is in practice with his son.Best Doctor I have ever had. 480-835- 5302 Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lower left pain....
J JessGoguen
JessGoguen I probably should have included that I had my gallbladder out nearly 2 years ago and do have some narrowing and inflammation in my pancreas. I know I have inflammation right now because my eczema is acting up, and this typically occurs when I have underlying inflammation as I never try new skin products due to household sensitivities. I will continue to keep an eye on it. I am noticing the lower left pain does radiate toward my back as well. Thanks for all the support..... [ more ]
rachelraven I get tremendous mittleschmirz (ovulation) pain if I'm not on Nordette. When I get that pain from ovulating on the left, I get **terrible** left lower quadrant pain, radiating down my IT band on that side (my messed up side). Not sure if you're female or male though, ("Jess" could be either). Agree the other stuff is unlikely pouch. What's your age? Not that gall bladder *only* affects this group, but overweight ladies b/w 30-50 are most susceptible to gall bladder issues. My dad gets... [ more ]
skn69 Galbladder.... Do you ever feel like you have a knife in your back slightly to the right of your spine? Pain radiating up to your shoulder or neck? That is glabladder too. The lower left abdominal pain does not compute with the galbladdar but it could be something else...or you could be having a minor blockage. I would call the doc and have an abdominal ultrasound (even then, sometimes nothing shows up). Good luck Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
B Burn If you have it try this.... It works!
MysticobraMysticobra
Mysticobra We will find something for that crisco... Happily! The questran is not 100 percent... But it sure has made a huge difference for me. Thanks Scott. [ more ]
Scott F Richard, there must be something tasty you can bake with that Crisco. I'm glad you've found something that works for you. [ more ]
Mysticobra I started using questran again! Why... Why... Did I wait so long. I have not had burn for two weeks and everything is going back to normal at the skin. Wow. Unbelievable. And another benefit.... I quit leaking! My goodness.... Just out of the blue I tried what I had sitting in the closet for months. It stopped all of it! I am not saying it will work for all but it was so stupid of me. I forgot and at one point was gonna give it away. I use one two packets daily. I have had the BB and leaking... [ more ]
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J-Pouch ForumsHelp! Need advice now!
help stop the burn please!
lovedby2lovedby2
AKT2 So sorry you're going through this. It's awful. My surgeon scoped and saw the severity of inflammation even with calmoseptine and put me on Welchol, a bile sequestrant. Bile burn is horrible. With no colon the bile wasn't being absorbed as it normally is. That and some adjustments to diet helped tremendously. Hope you get some relief! [ more ]
Scott F I never have butt burn either, also with a completely free diet. I was careful for the first year or so. If I eat very spicy food I get the same effect as before the J-pouch surgery (spicy on the way out, too), but it never really goes beyond one BM, or two max. I was fine for years before I got my bidet, too, though I really like the bidet. [ more ]
Mysticobra You are fortunate. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Emptying with a stricture
M Mark01
jeane Warm water tap enemas can also help. Just insert very gently and release the water very gently. MY GI has approved this method for me on occasion when needed and I find it really helpful to release the residual stool that is at bottom of pouch and getting blocked by stricture. I purchase fleet enemas, rinse them out well and fill with warm water. [ more ]
rachelraven Might sound weird, or gross, but when I've had narrowing/stricture issues, if I sit with my butt in my sitz bath, with pretty hot water in it, somehow it relaxes everything, and I can pass stuff into the hot water much more easily. Worth a shot, anyway. Works for me. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis or pouchitis
A Anthonyv
jeane Also, The antibiotics may help you as you could be experiencing some pouchiits due to fecal stasis in the lower distal pouch from not being able to empty the pouch fully. I have the same issues. When I take antibiotics, the pouch seems to function better and empty more fully with less cramping etc. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Post operative nausea
D Davidee
Davidee I'm not on any pain meds or anything else it might just be my system is a bit slow to get moving again...Thx for the tip on the anti nausea meds [ more ]
CTBarrister If you are past the postoperative ileus and pouch is emptying properly the nausea is not due to any transit issue. If you had some kind of partial blockage you would know it from pain. If it's just nausea and no pain or discomfort, something else is causing it. What meds are you taking? I would suggest trying Pepto Bismol which will calm the burping and gas and probably relieve the nausea. [ more ]
Davidee I did have a post operative ileous yes so I thought maybe the nausea was left over from that...it seems to be mainly at night now with a lot of burping and gurgling [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture and/or blickage?
DarrenDarren
Darren Thanks Jan My CT showed no bloackage which I expected as I was feeling better the night before. The scan did however show inflamation toward the lower bowel. Thinking you are right. Darren [ more ]
Jan Dollar I did forget to mention that just because you've gone 14 years without incident, it does not mean it should be a shock or surprise to develop obstructive symptoms at any time. We form adhesion tissue within a few weeks of surgery and they remain indefinitely. All it takes is for a kink in the gut to occur and you are obstructed. Most of the time, things right themselves and you are back to your normal routine. Anyone who has had abdominal surgery faces this risk. Jan [ more ]
Jan Dollar Sounds like cuffitis, pouchitis or both to me. I am sort of surprised you are having a CT first without other symptoms that might indicate something more serious (like a high fever or sacral pain). Did you try a course of antibiotics first? Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch severe reaction to Amoxicillin, will I recover?
RockoRocko
Rocko Hi, thought I should post a follow-up The symptoms eventually got under control with help from the steroids. I managed to taper to 30mg/day prednisone (plus the budesonide), while also taking VSL #3, and it made the diarrhea mostly go away. I then tapered down to 25mg pred/day and after 2 days the symptoms have unfortunately started to come back. The symptoms also came back when I tapered from 40mg to 30mg of pred, and then things got better again. I am hoping that I can stay at 25mg pred... [ more ]
Rocko Thanks for the info and the laugh, Scott. I've started taking immodium, taken three so far today. It might be helping a bit. [ more ]
Scott F For many (most?) stool tests a liquid sample is best for ensuring that you'll find what you're looking for. I don't know if this applies to C. diff tests, but it's true of other infectious agents ("ova and parasites"). Many years ago when I was probably first developing IBD I was sent into the city (New York) from the suburbs to get a "proper" version of such a test, then performed by the health department. The first step was to drink a strong laxative, followed by sitting around in a shabby... [ more ]
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J-Pouch ForumsHelp! Need advice now!
A New Level of Tired
linalina
lina Hi all! Thank you so much for your replies. I wanted to update and share what I found out. I did two things: 1. I added supplements: a sublingual b-12 supplement, a turmeric supplement, and an astaxanathin supplement (all organic/gluten free) to my daily supplements and vitamins. Ok, sorta helped. I'll keep that up. 2. Then I finally did the thing I didn't want to do before because I'm silly. I cut out all gluten. I've burped my whole life, all the time. I stopped burping in one day. My... [ more ]
skn69 I laughingly say that it is a lifestyle choice that I did not choose! I get so tired that on my way home from work (in the subway or tram) I just want to lay on the floor and cry. I used to take naps in my boss's car when I was a student working in a souvenir shop in Paris (led to all sorts of strange situations...it was parked in the street in front of our shop and tourists would constantly knock on the window to see if I was alive or call the beat cops to check on me...they knew me by then... [ more ]
CeeeeCeeee When I am dehydrated I have the same symptoms you are describing. Actually, at those times I need more than just water. So, I begin drinking Pedialyte. I'm not crazy about Gatorade. When I had an ileostomy I used to head to the ER for an IV to hydrate me. Haven't needed to do that since takedown 12 years ago. Hydration made a real difference for me! Best wishes! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Procedure for fistula/ abscess yesterday need advice :)
C Char-muir
Scott F PMs on this site are called "Dialogs." The easiest way to start one is to click on the person's name, and select "Start Dialog" on the right side of the screen that pops up. The easiest way to see if you have any new messages (and to check them) is the "Dialogs" button on the top, right of any of these Forum screens (you have to scroll to the top). You can set notifications to email you when you have a new message, but the button turns pink in any case. [ more ]
Char-muir Thanks for all your replies, its good to know tht I'm Not tht only one with these issues and also tht there seems to be quite a lot of options available. I'm from the UK and have had my surgeon since I was 14 (nearly ten years) I probably wouldn't trust anyone else as he has performed all my surgeries so far. He contacted me a few days after the procedure I had to clear infection from behind the fistula and he said tht the incision he has made should heal but I will still be left with the... [ more ]
Uc-Danielle Hi! I have been going thru for 3 years now so you can private im if you want to discuss things further [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt on fire
N New_Life
CeeeeCeeee What are you eating? At your stage of recovery I was gently introducing my connected J-pouch to simple bland foods. After 6 weeks I began introducing one new food at a time. This regimen was not easy because I had chosen to keep my temporary ileostomy for an entire year and during that time I could eat and drink everything. However, my regimen paid off. Within 9 months to a year I could once again eat/drink everything. Best wishes! [ more ]
SandyS I'm gonna put in my vote for calmoseptine. Wash dry cake it on! Wake up with zero butt burn. It will ruin any underwear tho. FYI [ more ]
Mysticobra Lidocream. I just got some and have not used it yet. Will keep you updated. I will only use it when it is extremely irritated. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch interstim Medtronic bowel therapy
C Cozy52
SandyS Ps I'm not real sure I'm following this thread so wanted to post again cause I unclicked link. Now I think I am. 😁 good luck I'm not super tech savvy [ more ]
SandyS Hey I can answer this one! Lol I had UC had my Jpouch in 2000. I had several fistulas and every complication known to man. I've had 20 plus surgeries but after YEARS of incontinence my dr suggested interstim. I had my first device implanted nov/dec 2012. It was life changing! I've read horror stories on another site about pain at implant site and nerve damage but I only had 1 time that was wonky about a year after implant and pain was so bad couldn't walk. I turned it off. Saw my dr. Waited... [ more ]
Cozy52 My interstim is bowel incontinence. It is pretty new around here and can't find anyone who has had both and I am going through the trial Part now and in 7 days I may have the permanent one and just wanted total with someone who has had both and wondered how it has worked for them. I have researched everywhere I can think of and reached out to this but no results yet. I would really appreciate it for any suggestions or help I can get. Also, I am interested in anyone who has bowel incontinence... [ more ]
See all 4 replies...

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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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