J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Then could one of the infrequently used forums be renamed? [ more ]
I did notify Bill J about this and he is thinking about it. One issue is that we have a lot of forums, yet most of the activity is in 3-4 of them. Jan [ more ]
Thanks Jan, I think pouch failure could work too if you think that's better - I think that may get a little blurry with all kinds of pouch problems.. " pouch failure and removal..?" [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Wendy, At the 13 year mark, whatever your pouch can handle is what it can handle. This will vary with the individual. I can handle pretty much anything, and I eat a salad every day for lunch. I am not a Vegan per se, but occasionally have Vegan days. I find that eating a lot of vegetables actually assists in promoting regularity. Antibiotics tend to thicken up my stool, and a lot of fiber IMHO helps clean me out a little better. Its really important to chew foods well. 28 chews minimum and... [ more ]
Thanks everybody...my takedown was 2005, so def not a newbie, just trying to make healthier/sustainable eating choices that my jpouch can handle. [ more ]
A lot of people want to snap fingers and see instant results from the surgery, but do not fully appreciate it takes a very long time for the J Pouch to adjust/adapt. Veganism is doable with a Pouch, but I do not believe it is realistic or a good idea for the first year after takedown. My worst blockages were due to raw veggies, however I now eat a large salad every day for lunch and have no problems whatsoever. What I eat for lunch now I would not have in my first year after takedown. Just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
The pain is completely gone! [ more ]
I appreciate your pitching in Scott and Jan. Another few more days just past since my last post and thankfully, the pain has lessened when I press on the area of the belly that's been achy and the dull pain has pretty much subsided orherwise! So, yes, hopefully - and it seems like it might have just been - my guts twisting around adhesions creating a partial blocage. Massages did indeed seem to help aluviating the pain. Will try to remember to give you one last update in a little while. [ more ]
Hopefully this is just a blip, and soon things will be back to normal. Adhesions form within the first few weeks of surgery and stay indefinitely. If your gut twists against them, you get an obstruction. Sounds like you just have a partial obstruction. If you cut back on solid foods, especially roughage, and increase fluids, you should be able to pass whatever is “hung up” inside. This may or not recur and has little to do with what you ate. Some people find massaging the area and using a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
Diet really doesn’t have much to do with obstructions, as your hospital GI said. Once the small bowel narrows, though, for reasons having nothing to do with diet, then larger food fragments, like insoluble fiber, may get trapped first. If apples make your bowel function better then you probably ought to eat them, IMO. You’ve gotten conflicting advice from two gastroenterologists. You might as well follow the path you like better. [ more ]
I asked my GI about that, and he said it didn't matter, the apple itself was a problem! I just wonder if even very good doctors are not educated re diet. [ more ]
A lot of the goodness is in the skin, if you can eat apples comfortably I wouldn't worry about it. For what it's worth I eat apples daily. Also for what it's worth I don't seem to be able to take suitable fibre, not psyllium, not metamucil and not benefibre. In fact I'm starting to think I'd be better off without banana too. In still playing with this, but maybe I'm an enigma lol [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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to Clouseau....so sorry to hear. hope u continue to see good treatment. Trish to Andu......rectal dilation is common....scar tissue forms at fusion site. Can be done as out patient. Good luck. Trish T [ more ]
I had my Jpouch done in 1983 at Mt Sinai in NYC. I have had several mild bouts of pouchitis. I suffered from anemia but after an iron infusion 3 years ago I’ve been fine. Now I am having very bad rectal pain. Maybe need dilation? It is very uncomfortable. Anyone else with this problem? [ more ]
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J-Pouch ForumsGeneral Discussion
Weird, I also have had no appetite for 4 months or so and am losing to much weight. I think it is because my crohns is getting worst. [ more ]
Bit of a weird one this; but I've experienced both, either constantly eating, snacks and everything, even after a huge meal and still feeling hungry, then on other occasions totally off my food for days, both episodes were due to dehydration. The always eating, was my body craving fluids, which my brain mistook for hunger rather than thirst. Although, when off my food, I was normally admitted into hospital via Ambulance for IV fluids and within maybe 20 mins of receiving fluids, my appetite... [ more ]
If this has only been going on a few days, it is possible you are dealing with a mild underlying virus and that it will run its course in a few days. If not, it wouldn't hurt to take a look at any recent events happening in your life. Stress - positive or negative - can manifest in interesting ways, including loss of appetite. If it persists, it wouldn't be a bad idea to get a workup to see if there is something else going on. In the meantime, drink plenty of fluids - if it's a virus,... [ more ]
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J-Pouch ForumsPouchitis
Thank you for validating I'm a medical professional too- i had CMV colitis in 2003 my colon was teaming with it and it nearly killed me. I was septic -on TPN etc and had to stay on IV ganclcylovir for 6 weeks post d/c from the hospital Im not sure what's happening now but I'm happy. [ more ]
Gee, viral pouchitis is a real thing. The only one I know of being diagnosed is CMV. So yeah, an antiviral could have a positive effect. But what does not make sense is an antiviral specific to influenza. Perhaps there is an unknown sensitivity to some virus you have been harboring in your gut that was causing trouble? Let’s hope this is long lasting! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
As long as this therapist understands that you do not have a rectum and ileal tissue is less sturdy than rectal tissue, it might be OK. I’d get it cleared by your GI first. Another thing I would be concerned about is how effective this would be. But, if it does provide some temporary relief, you’ll know the tailbone position is the cause. This is done under anesthesia sometimes, so don’t put up with more pain than you are willing to tolerate. Let us know how it turns out. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi I’m getting bouts of thrush and at the end of my tether. My GP said not to keep taking the oral difkucan as it can damage the liver and the drugs I take are suppressing my immune system which makes it worse. can anyone help me please. I’m so sore itching and bleed with it. [ more ]
I agree with ClZ81...probiotics (not at the same time as the antibiotics, put a few hrs between), them), yoghurt, no baths or bath bubbles, no nylon unddies but cotton, no tight jeans and made sure that it breaths down there! The one thing that my Gyn gave me that really helped (other than the above insturctions) a lot over the years was a special soapless soap made especially for that problem. Haven't had that itch or yeasty feeling since then. She also told me to not over 'clean' the zone... [ more ]
When I was taking antibiotics chronically for pouchitis, I used to take some form of probiotic every day. If I even missed a couple days, I would start to get itchy. I took the strong stuff (VSL) for awhile, but even the little yogurt drinks were enough to keep it at bay for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Yes. Ear plugs. I used those. Forgot! I was also in the hospital 3 consecutive times. 15-18 days each. On my last venture they offered an air filled mattress. Omgoodness. Made a world of difference. Pillows. I had four pillows. One on each side and two for my head. I was in a long time. Nurses though I was crazy. But inwas a comfortable crazy. Richard. [ more ]
I couldn't have slept without earplugs and eyepads. Simple items, but hospitals can get crazy noisy, especially if there will be a roommate. (I didn't get enough drugs to put me out after the first day). Also take him a sweater or robe for when he starts walking the halls. Where I was, it was always chilly and the gowns were no where near warm enough for hall-walking. Also, I'd suggest a note pad and pen to be sure to track whatever the drs./nurses tell you, and to take down any other notes... [ more ]
I was fortunate that my wife could be with me for the full 21 days I was in the hospital for BCIR surgery. There was a pull-out bed for her in the room. It was important for her to go out for long walks and shopping, but she was always back to walk with me in the hallway and to have meals provided by the hospital in my room. I was so thankful she was there and put up with me when I was in pain. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for your input, Jan Dollar! So I think I'm ending up with both, in the end. My obgyn wants to bring a colo-rectal surgeon in for my planned c-section, and I'm scheduled to receive ongoing care from a gastroenterologist throughout and after my pregnancy. [ more ]
I’ve been seeing a gastroenterologist since 1 year post op; 21 years. I have seen no need for a surgeon. Jan [ more ]
Thanks for the input, @elmerfudd ! I was leaning the same way. I haven't had any additional pouch-related surgeries since my pull through, and my issues now aren't surgical (partial obstruction that comes and goes, decreased output). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi Rachel,how are you doing? I am seeing a new gastro in LA, and will most probably will start remicade. I know what it is to have a new type of seton in, with the hard ties that feel like barbwire. The first few days are terrible and then when the tissue becomes less inflamed it feels less tight (at least in my experience). Have you tried a very very limited diet to control the acidity of the stool coming out? It has helped me A LOT, to the point where the pain and burning was so unbearable... [ more ]
Yeah, you get it Rachel. Nothing offers 100% positive results. Even with everything going exactly right, the result can be lousy. Seems like the only constant is that fistulas are notoriously difficult and persistent. Is there hope that the tract might shrink over time, or is that not possible? Again, I’m so sorry about this. jan [ more ]
Rachel, sorry to hear this. I sent you a PM as I've recently developed a fistula. Would love to hop on the phone or text - it feels like there is no one to talk to about these things. [ more ]
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J-Pouch ForumsPouchitis
Here is a link with good information to see if you fit the criteria. https://www.spondylitis.org/Enteropathic-Arthritis Jan [ more ]
Do you really think that I've got arthritis? It has crossed my mind, but there's no suspicion of it from my doctors. I haven't asked about it though either. I'd like to find out, I just don't know how to go about it. [ more ]
If you can get by with treating the pouchitis, as the underlying cause you are better off. I would suggest a referral to a rheumatologist, as it appears you may have enteropathic arthritis. This approach may get you better care for your arthritic pain. I have enteropathic arthritis and I am treated with a team approach with my primary MD, rheumatologist, gastroenterologist, and pharmacists. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Yes, unfortunately j-pouch diagnostics are full of red herrings! Jan [ more ]
Well, the working theory had been SIBO, especially with a borderline positive breath test (inc. methane) and the fact that I responded well to a Xifaxin/Flaygl cocktail. Maybe more pieces to the puzzle, or totally unrelated. [ more ]
If your primary diagnosis is IBD, then ulcers and inflammatory polyps are fairly common as time goes on. This is why periodic scoping with biopsies are necessary. It does not end with colectomy! These signs of inflammation could absolutely be clues in your current symptoms. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Beth156 thank you for your post. I don’t feel so alone anymore. I was diagnosed with UC when I was 18 and had all three major surgeries when I was 21 years old resulting in a jpouch. Now 7 years later my husband and I are trying to conceive and having a hard time. Ive done the egg retrieval and two frozen embryo transfers. The first one implanted but it was a chemical pregnancy and the second one likely implanted but we aren’t sure. My doctor ordered Recurring Pregnancy Lost Panel and a... [ more ]
Thank you beth156 for your encouragement and prayer. Congratulations on your baby. I really do you appreciate your response, it gives me hope. [ more ]
Just want to chime in with another J-poucher here with infertility but a happy ending! I got my j-pouch when I was 15 in 1997, there were no statistics on the surgery and infertility at the time... I got married at 28 and started trying the next year, then happened upon some research that showed it was very likely I would have issues getting pregnant. Had an HSG which showed 1 tube blocked, 1 partially blocked and my OB said if I tried for 6 more months with nothing, that I should go... [ more ]
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J-Pouch ForumsGeneral Discussion
JFIll21, thank you very much for sharing. [ more ]
Ocelot, we can all relate to what you’re going through. I’m 62 and just had Step 3 last November—so still getting through the “transition.” I was diagnosed with UC in 2001 and had 5 years of hell followed by 10 years of Remicade induced remission—and then hell broke out again. After emergent surgery I managed the end and loop ileostomies OK, but didn’t want to deal with it the rest of my life. The j-pouch can be a challenge too. If not for the people on this board, it would be a lot more... [ more ]
CTB23- Thank you. Your response is very much appreciated. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsPouchitis
The reason there is no clear answer is because there are multiple forms of pouchitis with different etiologies and disease courses. The most common one is related to bacteria, but it is not an infection. It is an inflammatory response to the presence of normal bacteria. This response is why pouchitis is relatively rare in those without IBD. Other types of pouchitis include Crohn’s pouchitis, ischemic pouchitis (from poor blood supply), and infectious (like C. difficile and CTM infections). [ more ]
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J-Pouch ForumsHelp! Need advice now!
There are more things that can slow things down like metamucil and opiates. You might want to try mixing metamucil in with applesauce after your last meal of the day and use Imodium, or equivalent. If you have any left over pain medication you can try that plus I found sleeping pills helped as well. It is like telling the j-pouch to go to sleep. [ more ]
Just a thought: perhaps a short course of oral steroids (e.g. Entocort) might calm things down long enough for the proctofoam to get a toehold on the problem. Once the proctofoam gets to stay in longer it might continue to stay in longer. I hope something works for you! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
@duck11 I am having this issue. Right now, my pouch is pushing on the back vaginal wall. It's like a rectocle, but from the pouch instead. https://www.mayoclinic.org/dis...-causes/syc-20353414 About a year ago, I had a hysterectomy because I had a large uterine fibroid. At the time, the surgeons said scar tissue had fused my pouch to my uterus. So now, I'm thinking the pouch may be fused to the outside of the vaginal wall. I can't seek treatment with my original colorectal surgeon because of... [ more ]
Sounds like it could be possible. I have a prolapse that was external prolapse I think prolapse can occur differently based on your anatomy. Also your pouch may lie closer to that area normally so that might be the case. [ more ]
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J-Pouch ForumsGeneral Discussion
Everything I have read indicates that probiotic effectiveness is strain specific. Nearly all probiotics contain a strain of acidophilus. If one works for you, that is great. I have tried a number of them, and have yet to find one that makes a noticeable difference for me. Jan [ more ]
I’m really surprised it’s had an effect, it may not work for everyone but I’d recommend people try to it especially after a round of antibiotics because antibiotics can actually do harm to friendly bacteria in the gut which is why Pouchitis comes back in some people so quickly after finishing antibiotics, I really think my case of increased urgency was antibiotic related due to an imbalance of friendly bacteria, probiotics should definately prevent Pouchitis from reoccurring for a longer... [ more ]
Acidophilus is one of the Lactobacillus species found in most of the combination probiotics. It’s fantastic that it’s working for you inexpensively. Some probiotics have more kinds of bacteria (8 in VSL #3, for example), or much higher numbers (900 billion in one packet of VSL #3 DS), but can also be much more expensive. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Yes, my surgeon is who I have been discussing it with. He hasn't mentioned any of those things but I will when I call them today again. I call there at the very least every other day because I've had so many issues. So far this morning in 6 hours I have put out 1600 cc's. Yesterday I topped off at 4100 cc's. This is the highest I have ever been, plus my pouch is working several times a day, so I'm really loosing a lot of fluid. I wonder if he's going to do the surgery sooner now because of this. [ more ]
Has the concept of excessive peristalsis after surgery been discussed with your surgeon? Surgeons are well aware of spasmodic bowels after surgery. You mention speaking to your doctor, is the doctor you are talking about your surgeon? Because this is an issue that should be getting discussed with your surgeon, if in fact it is excessive post surgical peristalsis. I had this issue after takedown and before takedown. Worse after takedown. It’s not an uncommon issue, but I am not certain that... [ more ]
I do have bursts after I eat but also have them through out the day. I think my doctor is at a loss right now. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsHelp! Need advice now!
Can your specialist write you a medical excuse from your job? If not can they tell your GP about your problems? I'm sorry you are going through all of this. To have vaginal problems along with a sick j-pouch has got to double the need to be off of work. I eventually had to have my j-pouch removed but didn't have the vaginal complication. I too had a difficult time with the ileostomy in-between my j-pouch surgeries. My j-pouch problems got so bad I thought even going back to the bag would be... [ more ]
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J-Pouch ForumsGeneral Discussion
I take methotrexate 12.5 mg weekly, to prevent renal secretion of Remicade. You will have to take Folic Acid with it, which will be prescribed, otherwise you will get sores in your mouth. My blood work has been fine since I have been taking it. Been on it and Remicade for 2 plus years now and it works well. Also had my Remicade blood level tested and it tested as therapeutic, presumably kept at therapeutic level by the Methotrexate. [ more ]
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J-Pouch ForumsGeneral Discussion
Usually it's a tablespoon in a glass of water 20 mind or so before a meal.. so maybe take with you loperomide lol I use acv a lot but I haven't drunk it yet. Am planning on trying it though [ more ]
I know this thread is old, but I am hoping some of you are still following! Nicki, how were you taking ACV and how much when you first noticed a drastic difference? And for anyone else that's had success, what way/amount do you recommend? Thanks in advance! [ more ]
I LOVE ACV! It helps with so many things, including digestion issues. As others have said, be sure to mix with water. You'll also want to drink it from a straw to protect the enamel on your teeth. Hope it's still working well for you, Nicki. (Great name by the way ) [ more ]
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J-Pouch ForumsGeneral Discussion
Butt burn is the worst.. I use calmoseptine . And also hemmoridal wipes(witch hazel) seems to help. [ more ]
Thanks for the suggestion, Pilates Josh....I'll for sure hang on to the name of this cream! [ more ]
I got a triple numbing cream from pain management doctor. Benzo/Lido\Tetra cream. It’s amazing for butt burn [ more ]
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J-Pouch ForumsGeneral Discussion
Drinking water is an issue for me. Even before surgery I have never liked drinking water. I have to force myself to drink it. In never reach my requirement. . [ more ]
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Thank you. I know the color of the urine is a good indicator. Here I went for more water to test, to see if I feel better. [ more ]
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J-Pouch ForumsGeneral Discussion
Ok thanks Scott. I will look in to the DS. Thanks [ more ]
The data is best for VSL preventing or delaying pouchitis. Some people (including me) have also found benefit in managing chronic pouchitis, but there isn’t great research data to support that. Some people are able to get insurance coverage for the prescription-only DS (double-strength) form. I suggest you do a search on this site for VSL and read the dozens of discussions we’ve had about it. [ more ]
Hi Scott, thanks for the response...i will be talking to my doctor soon in person. He didn't suggest a dosage over the phone. I should have asked before i ordered it. Is this VSL3 a medicince to treat pouchitit and IBD or is it taken to prevent the pouchitis from happening?I assume its to prevent ot when you dont have it. I'm learning about VSL 3 on the fly so i appreciate your help. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsPouchitis
New Pouchie, I was also diagnosed with chronic pouchitis right out of the gate. My first course of antibiotics was 6 weeks after reversal. Kept trying 2-3 weeks on antibiotics and tried to get off, but as soon as I'd stop, symptoms would return. So, currently, I rotate Xifaxan, Flagyl, and Alinia. Usually on each for maybe 3 weeks at a time. Been using these for a few years now and still all work well. I didn't understand antibiotic rotation, and no one really told me about it at first, so I... [ more ]
C. diff is no fun, that’s for sure. Cipro can predispose you to C. diff, but Flagyl doesn’t. Flagyl is even used to treat C. diff, though it often isn’t very effective. I first went on long-term Cipro in 2009 (approximately). I wasn’t able to find any other antibiotics that worked, including Flagyl, so I unfortunately couldn’t rotate antibiotics. Cipro alone did the trick for about 5 years, and then began to lose effectiveness. Surprisingly, adding Flagyl worked like a charm, and the... [ more ]
Thanks Scott. How long did you go on the antibiotics for when you were on long term? Did they not become less effective over time? I am taking 4 sachets of VSL daily (2 morning and evening) but that only started 3 days ago so prob won’t see an effect yet, esp as pouchitis is currently active. Like everyone else I don’t like the idea of long term antibiotics as I had c.diff infection as well as severe UC when I had the emergency colectomy, really don’t want c. Diff again! [ more ]
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J-Pouch ForumsGeneral Discussion
Actually, the risk of pouchitis increases with time, so your case is not unusual. What is unusual is the high fever, and it does seem as if you were septic. An acute flare of joint pain with pouchitis points more to an IBD type of pouchitis, so do not be too surprised if you have recurrent flares (just like UC). You may be in remission for months or years, or even decades. Jan [ more ]
I think that’s what the problem is, I most likely weren’t on antibiotics for long enough, and I think I was on a combination of Cipro and Metronidazole because maybe they thought the Pouchitis would go away quicker and for longer I’m not sure, I was actually hospitalised for a few days over Christmas because I had an extremely high fever and they suspected Sepsis but it weren’t as bad as suspected really, I was on the IV antibiotics for 3 days the then a week on tablets, I mean I feel great... [ more ]
What Jan said. Also, VSL does seem to reduce the frequency of pouchitis occurrences, and I have found it very helpful (at high, ridiculously expensive doses). Not everyone finds it helpful, and it can be hard to decide if it’s working. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you guys! For those last posts, I mean. All very helpful and encouraging. And thank you so much for offering to answer questions, Dr. House! I'll definitely take you up on it if ever I need to. [ more ]
I believe it will get better and better! After a few years I pretty much sleep through the night. I think it takes a while for your body to heal up, get into a groove. And yes, sugar and alcohol mean I will need to get up. Diet is key for me. But there is nothing like a good, full night's sleep! I remember the first night I slept all night and it was exactly like the first time your baby/child sleeps through the night. Glorious! Stay optimistic. [ more ]
I must also admit, as Jim said, I had a liner on my bed every night for the first few months. It avoided embarrassing accidents by allowing me to easily take care of it without anyone noticing. Just having that piece of mind is huge in relaxing enough to get the sleep you need. In fact, adult depends we’re in full force too just as a precaution. Accidents in the night are nothing rare for a while after the surgery. I would imagine that most of the people on here have had them, so if you are... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thank you a million times for all this information and the time you have taken to help me. [ more ]
Hello, Amanda. I also have to follow a low carb diet because of diabetes and it doesn't always agree with the j pouch, but it can be managed. I attended a class in diabetes management and we learned how to choose food and snacks, the difference between simple carbs (bad) vs. complex carbs (good), and portioning. Maybe there are classes near you, given by a hospital or university? It helped my diabetes and my pouch so much. Before that I was lost trying to manage blood sugar and a new pouch. [ more ]
Thank you so much- this really helps [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I doubt that elevations that slight are of any signifigance. That said, if they are a big jump compared to previous tests, then repeating in a week or so makes sense. Otherwise, following up with repeat tests in a few months is fine. IBD is associated with various liver diseases, so that is the reason for screening and follow up. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Scott, I am sorry for the late reply. I confirmed with my GI that I do have some of my colon left. Though, I probably can't confirm if it was stapled or if there was a musectomy. My ulcers are around the connection in both the colon and small bowel, but not anywhere else in the pouch. It's extremely frustrating finding something that works because it isn't cuffitis or pouchitis (so my doctor thinks), so standstill still continues this year. I'm out of ideas as to what might work. Anyway,... [ more ]
The norm in the US is to leave a rectal cuff and staple the anastomosis, regardless of the number of steps/surgeries. This tends to have a better overall success rate, but (as you’ve experienced) leaves open the possibility of cuffitis. Mucosectomy isn’t always (or even usually) performed, as far as I know, but surgeons seem to vary. Perhaps you could request a copy of your hospital record and read your operative report. The hardest part may be providing an old-fashioned signature... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the reassurance Winterberry! You are the reason I bought both a bottle and attachment bidet (from a question I had prior to surgery). I’m pretty sure the blood spotting is a fissure but texted my surgeon to be sure (no response yet). This regimen is exhausting. Guess that’s what makes it all the more special when your pouch finally matures. Thanks again. [ more ]
Jfill21, When I was at 10 weeks I was in the same situation as you describe. Exactly! Output that was different every time, burning, leakage causing new burns. I couldn't leave the house for more than a few hours without feeling extreme discomfort and anxiety from burning, every week brought some new frustrating issue. Exhausting. But around six or eight months things started to get better. I stopped using Imodium around the third month to try and let my system develop its own schedule. Had... [ more ]
Hey Bubba, thanks for the reply. You asked where I’d like to be at this point—great question! I know 10 weeks is still early for major improvement but my recovery status is my constant focal point. Every BM is a production with the maintenance required. Going 3-4 times at work—around meetings and other work related duties—is challenging. No regrets with the j-pouch however! I’m keeping my eye on March which is when I hope things will settle down and life will become easier. My diet is slowly... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi Dianne, Thank you for your response. I am really glad to hear that the plug is working well for your son. I hope it continues. I definitely understand the part where you say, "Now I wish I could get him to take better care of himself" because I am sure my mom thinks the same thing about me. My doctor just responded to a few questions I had and he said that the fistula I have is not a true fistula; rather, it is a "blind-ending tract (a sinus)". He is going to speak with my surgeon about... [ more ]
Hi John, so sorry about your chronic pain. I’m jumping in here with my two cents. My son sees a number of doctors at Weill Cornell in NYC. He had a bad internal fistulia that no one could figure out what to do with. It was all internal, from his j-pouch to an abscess in his pelvic area. He was on more drugs than an addict. His main surgeon at Weill Cornell, Dr. Shukla brought in Interventional Radiology, Dr. Lee. Dr. Lee did an experimental surgery on my son. Jeff was only the 13th patient... [ more ]
Fistula surgery is tricky business, often doing more harm than good. I'd undertake it only in very skilled hands, and even then only with a surgeon who seemed to be appropriately conservative. Remzi would be a good choice, I think. Sometimes the smartest thing to do with a fistula is to learn to live with it, and I know just what a terrible thing that is to say. I'm not quite sure what the doctor is trying to do with the Cipro and Flagyl. These are great drugs for pouchitis, and it's not... [ more ]
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J-Pouch ForumsGeneral Discussion
Like I said, my local surgeon said that I can't have them, this didn't come from Cleveland. I am curious .. maybe it's a scientific definition of hemorrhoid or something. My personal studies show, they're hemorrhoids. [ more ]
Why couldn't we get hemorrhoids AKA? I have had a redo like you with mucosectomy and my GI Dr Shen has never told me that... as a matter of fact when they first hooked me up I had a huge one that took awhile to calm down due to how many times I was going poop. I also thought since I had a mucosectomy that I could not longer get cuffitis with a pouch redo, well my last pouchoscopy with Shen in July I think it was, he stated that visually the pouch looked great but the biopsy showed some cuff... [ more ]
Yeah, I think there is some misconception about that. For some reason I used to think the same thing, until my second GI confirmed years ago that we can indeed get them. Hemorrhoids are basically swollen blood vessels in the rectum and anus, so there really isn't any reason we couldn't get them. We still have blood vessels there, after all. I suppose in theory, your propensity toward them could be due to how much of the original rectal cuff you retain. Beyond that, I admit I really don't... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have part of the intestine that connects to the pouch be like mushed? So stool has a hard time getting through to the pouch I have a W pouch [ more ]
Jeane, he used his finger in the office and did as much as he could and he said to me "man your sphincter muscle is spasming a mile a minutes and it was without my control so he showed my the metal tool that he would be using but the one he showed me was a smaller one. He says its smaller at the end and then gets bigger the farther it get put it. There is no reason for me to deal with that awake especially not being able to control the spasms. He was basically fighting to get his finger back... [ more ]
Phonix, That would have scared the hell out of me too. Ask him if he is using the instrument to dilate or his finger. I would want to know. I do know I am having a very mild balloon dilation in two weeks and can report back results. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Allergy to essentially all animal proteins is pretty rare. Pouchitis is very common. What also seems more likely is something more in line with pancreatic insuffiency, pancreatitis, or something similar, which is interferring with your digestion. Perhaps you have gallbladder issues, which is very common. I would have the endoscopy to rule out pouchitis or other inflammatory issues in your pouch, then seriously look at pancreas/gallbladder issues. Also, celiac disease could be a factor. [ more ]
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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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