J-Pouch ForumsPouchitis
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J-Pouch ForumsGeneral Discussion
Yes I do have a few cramps which are painful enough to stop me walking if I am, they are followed by some noisy movements in the pouch. This happens usually when I am delaying going to the loo if needed and feel much better with no cramps once gone.I had my op 15 years ago and not have had any problems with adhesions yet!! [ more ]
Was much noisier in the beginning. Now, 24 years post op, its pretty normal unless I get past the comfort stage of needing to go, then things can get noisier. Bet you'll notice this change over the years, too. [ more ]
For me, an empty stomach is the culprit. If I keep some food in me the rumbling is minimal. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I've had this issue from time to time. Sometimes when I can't pass stuff, my anal anastomoses needs dilated. I self dilate now, so far so good. Are you feeling like you have stuff in there, but miserably are struggling to go? Have you ever had that issue? Sometimes I feel like my bowels just get sluggish, too. I like a looser stool. MoM, about 15mls (I take at night; I'm continent, and usually it'll wake me up in 4 hours to go) works when things go this route. However to stay "loose," I take... [ more ]
Some folks here like MoM. Others swear by white grape juice. Be careful not to get dehydrated - are you still peeing (and is the urine light-colored)? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Depending on where you are in Florida, mayo clinic or cleveland clinic. I believe cleveland is in Palm Beach, but I think there is one near Tampa not sure. [ more ]
Do you have a local gastroenterologist that you trust? He/she might be able to help you navigate this situation, even if mainly by knowing the surgeons in your area. [ more ]
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J-Pouch ForumsGeneral Discussion
No stomach ache and it's too low to have anything to do with my stomach. I do take Prilosec. I think it stinks but wound care at the hospital, I go twice a month for them to check it, they say it looks great! [ more ]
It may be effectively the same thing as a surgically created (intentional) mucous fistula, even though in this case it's a misbehaving GI tract. At any rate, I'm thinking about what might be causing your nausea. Does the fistula smell bad? Was it making you very upset before (or when) the nausea started? Do you have a fever or any other signs of systemic infection? A common GI cause of ongoing nausea is gastritis. That's normally treated by significant doses of anti-heartburn medication... [ more ]
No, that's not what it looks like or what it appears to be. That's what the surgeon said it was. It's an open wound at the top of my pubic area that apparently opens up to the rectal stub and then out the end of the anus. But the surgeon said it was a mucous fistula. [ more ]
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J-Pouch ForumsGeneral Discussion
I am sorry you have had such a horrid time! I don't know if you would like more advice or just a supportive shoulder to lean on? It has been long enough since your last surgery that ART can be done on and around the stoma site. I have one very hard section slightly to the left of my incisions scar that can not be massaged due to resulting pain but breaking up the rest of the scar tissue helped me to increase my yoga stretches. This old lady can now do a back bend! Lol! I keep creating new... [ more ]
I'm posting to this thread again to let you know what I've found out and to see how you are all doing. Subzero - The ART therapy worked well but I was afraid to let her work on the area that is around my stoma scaring. I just don't know where the adhesion ends and my j-pouch starts. My PCP checked my abdomen, she also prescribes my pain medication. She could tell that my adhesions were better. I didn't tell her about the ART therapy until after she noticed. I found out in February that I... [ more ]
Wow not seeing food for 2-3 days I see it within 2-3 hours 6-8 at most. [ more ]
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J-Pouch ForumsHelp! Need advice now!
It took 8 months of suppositories to get my cuffitis under control. I have UC and thought the same as you do about canasa as it is the same mesalamine ingredient that I took orally via Asacol for 14 years. That failed as I had to have my colon removed! The suppository is putting the medication directly into our j-pouches and it doesn't have to travel through our entire digestive tract to get there. I first used anucort for several weeks then canasa and back and forth until my GI sent me to... [ more ]
These meds don't work immediately, so it's not surprising you're not doing better yet. I'm sorry you're doing worse, though. If you're having a medication intolerance it will be a bit tricky to work out which med is the culprit, since you started two at the same time. Some intolerances clear up after a few days, so it can sometimes be worth toughing it out, and it can be hard to tell if you should. Why not give your doctor a call and hopefully work out a plan that takes your recent issues... [ more ]
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J-Pouch ForumsMen's Health
I do it too. I think you... Well I do anyways.... Forget to urinate after I emtied. Weird I know. But alot of times I will stop and go back cause I forgot! Gettin old ain't for sissies... Lol. [ more ]
I find that after I have finished on the throne and left the room that I often have to go back and empty my bladder standing. Not sure why just is! [ more ]
Ditto for me. I am not sure of the reason for it. [ more ]
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J-Pouch ForumsGeneral Discussion
I've also come to the conclusion that a powder - at least during these hot days - works much better for me than ointments at keeping the area dry and rash-free. Thanks for the caldesene tip, I'm going to look into it. I've used anti-monkey butt powder and a couple others. However, I am trying to get away from talc (due to asthma) and heard that bentonite powder can be used as a DIY. http://littleseedfarm.com/to-b...wder-dry-shampoo-too . Anybody ever try that, or have thoughts? PS, for... [ more ]
Caldesene is a great powder to use. Good barrier and helps fight yeast growth. It is all I ever used with my kids for diaper rash. Just be careful not to inhale the dust. Bad for the lungs (any talc powders). I agree about cornstarch. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
FWIW, I had Colon removed Mid July 2014 and takedown Mid October 2014 (aged 60). The surgery was the standard cut from pubis to breastbone-ish with a loop ileostomy right hand side. I can honestly say there wasn't much pain (much less than I was anticipating, which in and of itself is a major worry). Worst was the back pain after 5.5 hours surgery being twisted every which way but loose. Healed quickly. Out of hospital 2.5 Weeks I had issues with the bag leaking until I got the Convex type... [ more ]
I do hope you guys have some easier travels, Jeffsmom. But honestly, I do think a great portion of J poachers really don't have awful surgical paths. It's just here, on this site, many cluster. We need a balance of expectations, for newbies. Not everyone's adventure will be easy, and often they're just a new "different," but some trips are relatively uneventful. Mine was. And many will be. [ more ]
This whole J-pouch experience is an adventure......whether we want it to be, or not! For some of us, it is a positive "trip". For others, more challenging. The result, whatever it is, is the "NEW US". Before my surgery I worked with (taught) severely disabled children, some of whom had colostomies. I couldn't even look at their "baggies" let alone change them. We had a medical support staff to do all of that.......thank God! Ironically, I developed ulcerative colitis which was not controlled... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Nora, it sounds like you are having a 3 stage procedure. In that case, the first stage is removal of the colon And an end ileostomy. The rectum is left to make the j-pouch procedure easier. In the second stage the j-pouch is created and attached to a small remnant of the rectum, which is called the cuff. A diverting ileostomy is done at that time. The third stage is the take down of the ileostomy. Jan [ more ]
In the usual procedure the pouch is attached (stapled) to a short remnant of rectum called a cuff. It should be 1-2 cm long or so. That forms the connection "directly" to the anal canal, with no functional rectum left. There are other procedures with less rectum left behind, but they are generally only done when necessary, because they have a higher complication rate. [ more ]
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J-Pouch ForumsGeneral Discussion
And that is why I drive in! [ more ]
Dianne- I live on the west side and the buses that go east are on West 86th street off of Broadway and West 96th street off of broadway, don't know the numbers but I take them when I need to go to the east side. I really don't do well with public buses and subways. My prayers are with you, hope all works out well. [ more ]
Allycat, I hope you are feeling better after yesterday's procedure. I just ran over to Dr. Browns office to drop off films and medical reports. I had to be in the city anyway. OMG! What a day. I started out at Penn Station. From there took 3 subways to get to Lexington. Then had to walk from 68th and Lexington, all the way to York! Then I had to get over to the upper West Side! I couldn't figure out how to get the m66 bus which would have went cross town and across the park. Couldn't find... [ more ]
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J-Pouch ForumsGeneral Discussion
With all the gurgling, people think we are hungry! Tee hee! [ more ]
I traveled for work to over 34 countries for eight years. I probably flew over 100 times each year (2x a week at least). Back and forth to Europe from western Canada and let me tell you, I punished those airline bathrooms like nobody's business. That news story is ridiculous. I've sat beside barfing toddlers that set off a chain reaction of barfing throughout the cabin and no plane ever turned around! Eat what you need to when you need to and go to the bathroom when you need to. You can get... [ more ]
I fly long distances regularly for work. Generally, I pop in imodium day of the flight and go on my way. That said, I don't generally have order issues, though I imagine the sounds that come from the bathroom might give the flight attendants working in the galley pause. At the end of the day, everybody poops. And everybody's shit stinks. We've all gone through too much to worry about normal bodily functions. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Allopurinol doesn't do a darn thing for acute gout attacks. It's used to prevent attacks, and can take some time to figure out the right dose. They should be planning to measure your blood uric acid level at some point to see if 100 mg is enough. The usual drug to treat acute attacks is colchicine. Colchicine causes diarrhea in coloned people, but I can't help but wonder if we're immune to that side effect. NSAIDs are usually used for pain and inflammation relief during acute attacks, but... [ more ]
Thank you:-) I was able to get a prescription for Allopurinol- however it is only 100 mgs? This attack is so acute- I hope it will at least take the edge off and then control the attacks in the future. Thank you for the advice. I really appreciate it:-) [ more ]
Like Bill I use allopurinol for gout (300 mg daily). It has the advantage of no effect on my J-pouch, and no gout attacks. It has the disadvantage of being taken all the time, instead of just when attacks occur. I haven't had any side effects. [ more ]
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J-Pouch ForumsGeneral Discussion
I am so happy you called your doctor! And at least know what happened. Happy to hear you are going to be okay. This sounded so scary to me, and because we have gone through so many serious complications, I just knew something wasn't right. good luck to you! And don't forget to follow up with Dr. Shen.! [ more ]
Dr.Shen had me come in to scope me, he said dont go to ER. He was going out of town for 2 weeks but he would fit me in. I was the 27th scope/procedure he did on Wednesday. This guy is awesome. Before i was even sedated he said diversion pouchitis. And thats exactly what it was. My jpouch has been disconnected for 16 months due to a leak. This is the first time this has happened. No pain,no fever, just alot of blood. He sprayed it down with dextrose and plugged me up. Said remove the plug... [ more ]
It doesn't mean you're "dying" or bleeding out. It does necessitate a call to the doctor to see what direction they wish you to go. Don't panic. Was it a one time deal? Or has it been every mucus pass since? I have a fistula, and sometimes there's blood, sometimes there isn't. Hemorrhoid of course can be culprits, if you have a history, even with an inactive pouch. Did you do anything different recently? [ more ]
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J-Pouch ForumsGeneral Discussion
Lou, consider investigating the FODMAP diet for sugar triggers. [ more ]
Thanks again all, I will use your suggestions! Lily is pretty good about staying away from sugar of all kinds except fruit which she doesn't over do. This is a big change since she was a sugar junkie before. She knows she needs to stay away from it to be as healthy as possible. Heck, even us with colons should stay away from the crap! Kefir is another suggestion that the dietician gave us, it has more good bacteria than yogurt so I'm starting to add it to her protein smoothies. Thanks again... [ more ]
Very good/ important to know. What kind of sugar would be appropriate & which should be avoided? [ more ]
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J-Pouch ForumsGeneral Discussion
Originally Posted by Nora S.: Sorry, I got booted off the net before I could finish! Anyway, I have a mucous fistula right at the pubic bone as I had a rectal stub blowout about a week or so after surgery and back to the OR I went. The wound is open and oozes blood and bowel and I have to doctor it up daily, actually more like 3 times a day. This too is adding to the mental aspects of it all! It's designed to remain open until I have the 2nd surgery so I am wanting that done soon so I don't... [ more ]
Although it may feel like this will define you for the rest of your life, it likely won't. I would say that in a month I think about not having my colon less than ten times. Only when smelling popcorn or explaining to a colleague why I don't want any of their homemade macaroons. I've been colon free for 22 years. At this point I'm more concerned with wrinkles and sagging boobs. The pain will go away. Life will assume a new norm. This too shall pass. I 100% guarantee it. [ more ]
You are on the right track thinking positive! That is a huge part of all of this no matter how hard it is for you. This is a very very serious surgery and you don't know it until you go through it. Positive thinking is powerful. I know what you are going through. I just went through it myself. It's very difficult. I am still working on it. And thinking positive. Although the surgery was a year and a half ago most around me.... My family.... Think I am done. But I know I am not. But I keep... [ more ]
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J-Pouch ForumsGeneral Discussion
Mainly it feels like it and my new GI couldn't do a finger exam because it hurt so he thinks that what it is.. basically it feels like a cut to me, in one spot all the time. gets worse the more I go etc. Also proctofoam made it worse, which he said would happen if it was a fissure - it would open it up I guess. I also went on the low fodmap diet and I think it helped. I started cheating on it a lot and I'm still doing pretty good though. I do have a lot of gas....but I can pass it easily,... [ more ]
What makes you think you have a fissure? [ more ]
Thanks! If anyone considering surgery has any questions I will be happy to help. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi I had two polyps removed and stitches put in. Surgeon said it would take two weeks for stitches to heal. And also botoxed stricture. Went back to work five days later but still very sore? [ more ]
Yes.....my latest scope about a week ago revealed "mild" inflammation of the pouch and several polyps. My surgeon removed the polyps and sent them in for biopsy. Results were negative and he prescribed a course of Flagyl for the inflammation. My pouch is over ten years old and previous scopes have revealed polyps which he removed, as well. They have all been benign and probably didn't even need to be removed. Best wishes! [ more ]
Thanks for replies. The polyp is at the anastomosis, but I previously had pouch advancement and musectomy done. Surgeon is going to remove polyp whilst doing botox. He did biopsies of pouch. Not sure why he didn't remove polyp also. [ more ]
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J-Pouch ForumsGeneral Discussion
Trade ya some. I need to gain weight. I am still 25 pounds down more than a year and a half after surgery! But I have been skinny all my life. I'm my mid fifties (59 now) I started to gain a bit and got up to 176. After surgery I went to 129. It was miserable. I am in the mid 140's and am stuck there. It's as hard to gain it for some as it is to lose it for others. I guess. I eat all the time. Sometimes my teeth are sore! I am not... Not trying to make light of those who want to lose. Even... [ more ]
I hear you ytcrockpot. I have a nutritionist and eat more to manage my j-pouch now that before. I have other health problems and when someone like me isn't able to exercise much it's a huge battle to keep weight from creeping back on. Another huge problem for me is my hypothroidism. Since my surgeries it has only been undercontrol for around a year during the last 4 + colonless years.That slows my metabolism as well as my fibromyalgia and chronic fatigue syndromes with peripheral neuropathy... [ more ]
Your absolutely right But most of the time, it's some type of sugar or processed food that's makes us fat. If more people in the U.S. ate fresh, we wouldn't be fat. Keep a log of everything you eat. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'd take Eastern European toilets/paper any day compared to Asian "hole in the floor" toilets with a hose for washing the butt with cold water and no toilet paper whatsoever!! Just give me a toilet with a seat! I'll take care of the rest! [ more ]
Maybe instead of taking TP with, it might work out better if you took wipes, like baby wipes with you. There are travel sizes that would fit into a pocket, purse etc. Dab with TP first and then use them. I like the kind that the labs supply when giving urine samples. Single use wipes that are also good for cleaning of cuts, scrapes etc. I usually take some extra wipes with me from the lab's bathroom. I'm going to look them up to see if available from Amazon.com or elsewhere as they are my... [ more ]
Make sure you have lots of coins/local currency. Most/all of the toilets are pay toilets. I don't remember having any issues with their tp, but take some along, it couldn't hurt. My surgeon recommended Critic-Aid Clear AF antifungal ointment. It's called Clear Moisture Barrier With Antifungal. I ordered it from sweenstore.com. Also do not eat spicy food. Have a great time. I went to Prague, Budapest, Vienna, and Salzburg last fall. Beautiful cities! [ more ]
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J-Pouch ForumsGeneral Discussion
Before my J pouch creation, I had an illeostomy and colostomy bag for many years and my Surgeon and Consultant recommended no more than 6 Imodium per day, which I took 2 in the morning and 2 before bed and if I expected to be out longer than normal, I take 2 more, otherwise I only took 4 in total. Since my J pouch surgery, my Surgeon has suggested I take no more than 3 Imodium throught out the day, allowing myself to decide as to whether I need it or not. As it happens, I don't think I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
If you were farther along I'd think of SIBO, but first you might want to experiment with probiotics (perhaps VSL #3) and/or soluble fiber (e.g. Metamucil, Konsyl, Citrucel, Benefiber). These can also increase gas for some folks, in which case you might float away, but they are more likely to help, or at least do no harm. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsPouchitis
Sorry, I should have been clearer. In our discussion he said that we could try biologicals as the next step then I reminded him that I had serum sickness (neurological stuff) a few years ago and then he said that biologicals weren't an option for me. I've been switching things up, going from Flagyl to Cipro and adding Augmentin with the Cipro. And rotating them. Xifaxan doesn't do much for me. My pouch is very new, a year old this month. A few months ago I had a scope and showed some ulcers,... [ more ]
No cant take bios either. Had a bad reaction to remi plus I had skin cancer so I no longer am a candidate anyway. Why would your GI want you back on bios if you got serum sickness from them? What r u doing for your pouchitis? [ more ]
I'm sorry it's back. My GI mentioned during my last appointment about going on biologics again; have you tried biologic? Unfortunately I can't take biologics anymore, I developed serum sickness and had reactions to Remicade, humira and simponi. [ more ]
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J-Pouch ForumsPouchitis
Thanks, I can't wait for the pain to stop. Everyday is torture [ more ]
I'm sorry you both are having so many problems. I know what you are taking about. I'm on disability because of all of my health problems too. I hear you about the quality of life issues. If my health problems were just related to my j-pouch I'd be more inclined to ditch it sooner than later. I had a horrible time with the temp ileo - I know everyone says permanent ones are much better. It's difficult to make decisions when the options are neither that you want. Like picking from the lessor... [ more ]
Yes I understand I'm pretty sick now too. Who is removing your pouch? My Drs are at Cornel in NYC. I'm really sorry you have to work with this. I had to go on disability because of all my complications and multiple surgeries. I'm sorry that I went ahead with the pouch. My health would have been so much better all these years. Now back to the dr this week and here we go again. I really wish u a speedy recovery. Keep in touch. [ more ]
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J-Pouch ForumsGeneral Discussion
Firstly, I want to say congratulations on your permanent ileostomy. Although not having a bag is nice, you may be saving yourself a lot of misery by taking the simple way out of UC (I wish I did!). In a few weeks, you will start living your life and will pretty much forget about these issues and not having a jpouch. 1) I think so, this may be the itchiness of a surgical wound. 2) I think you still have your rectal stump, so you may see blood and mucus until you get that removed. It will hurt... [ more ]
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J-Pouch ForumsGeneral Discussion
Derek: Good news and thank you! I have a takedown in July after about 5 or six surgeries due to leaks, etc. So far it feels like Dr. Remzi has a nice, clean, well-built pouch in there so I hope I follow in your footsteps! [ more ]
Derek, so happy to hear you are doing so well, wonderful news! [ more ]
That's great Derek! Keep up the good work! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
Yes, It absorbs pretty much everything...so take at a good distance from your meds. I would take it morning and night when things got bad (beware...it makes for black stools...really freaky when you don't expect it)...it absorbs the liquids in the bowel and allows things to thicken up. It is availible in most health food stores and is OTC so don't worry...you can also eat a slice of burnt toast (old grandmother's remedy) if you run out...doesn't work quite as well as the capsules but it will... [ more ]
Hi skn69, Thank you for your input. I had never heard of activated charcoal. When do you take it, and how much do you take? I'll look for some in capsules tomorrow. I read that you can't take medications with it, as it absorbs them, is that right? Can you take it at night and have a diarrhea-free morning? Thanks Again, Connie [ more ]
Pack your immodium, lomotil, any stool thickeners or motility reducers that you like to use. Most French parapharmacies have a pretty good choice of OTC meds and you can go into most major pharmacies and ask for them (they do not understand the concept of OTC, even non prescripiton meds are kept behind the counter) You could eat simple meals (if you are going to restaurants) like fish and mashed or boiled potatoes...just ask them to hold the butter a bit. Rice is international and you can... [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the suggestions Scott. I will ask my surgeon and see what he says. [ more ]
There are plenty of other antibiotics to try: Augmentin, Tindamax, Xifaxan (expensive!), erythromycin, and some others. Don't give up - sometime antibiotics in combination become necessary. Have you tried VSL #3 DS? Some of us get a lot of help from that. A very low carb diet can also be helpful in some cases. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Hi Yvonne- I have a good doctor but I have gone to him for so many years and was actually looking to get another opinion since we have tried so many avenues and feel maybe another doctor might have some other ideas. My doctor is very good , but as far as I know he is not accepting any more patients, if I hear other wise, I will certainly contact you. Thank you. [ more ]
C.T.Barrister- Thank you so much for this information, however, the doctor does not accept my insurance , I am on Medicaire and would not be able to afford him if he does not accept my insurance. I like my current doctor but feel I need another opinion and was going to post it on the j pouch group to see if anyone living in NYC knew of a very good doctor who would accept my insurance. Again thanks for much. [ more ]
If you need a great GI/ J Pouch specialist in NYC you have one at Mount Sinai/Beth Israel. He was my specialist at Yale for 5 years until he left for NYC where he was promised to be part of a Pouchitis clinic (and maybe the eventual head of it?). Cleveland Clinic trained, and mentored by Dr. Bo Shen- here is his profile: http://health.usnews.com/docto...nis-oikonomou-626028 When he left Yale he left many sad J Pouch patients behind in Connecticut. [ more ]
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J-Pouch ForumsPouchitis
All the diagnosis gives you is a particular set of treatments to try. More important than the "correct" diagnosis is a treatment plan that makes you feel better. Neither biopsy results nor clinical judgement necessarily prove the diagnosis. Just try something in collaboration with your doctor, give it enough time to work (or not), and if it doesn't work, try something else. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsHelp! Need advice now!
If you exhaust the medical options the next step is, unfortunately, surgery. Pouch advancement (hand-sewn) with mucosectomy will often solve the cuffitis problem. It most only be done by a highly experienced and skilled surgeon. I think I'd go to Cleveland Clinic if I needed that procedure. [ more ]
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J-Pouch ForumsPouchitis
Breakfast: scrambled eggs with grass fed butter, a tiny bit of onion and a bit of smoked salmon with no added sugar ( fewest ingredients possible). He eats a brand of bread that is available in NYC area called "bread alone" that is very fresh, only 4 ingredients and he eats the flavor - french sour dough that has no yeast. I also put out blueberries for him because of the humira - blueberries to help ward off colds. Also berries are lower in sugar than other fruit. Other breakfast could be... [ more ]
Hi Boys Mom: Can you give me an example of what your boy eats for Breakfast, lunch, dinner, snacks? Thanks! Brendan's Mom [ more ]
Vsl3 does not help everyone . When my son tried it - it increased his bms. Also, i think it could have some irritants in it ( gluten or lactose? I cannot remember). My 14 year old son is on a restricted diet, humira, methotextrate, rifaximin, acacia fiber supplements etc....He feels better on the diet and that has given him the will power to stay on it. It is not easy though. I hope you find what works. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi everyone. Thanks for the feedback. I.ll definately ask the GI about SIBO At my next appointment [ more ]
if you had elevated CRP or sed rate blood tests along with elevated cal protection that could be sign of disease activity. [ more ]
Yes, Flagyl or Cipro can be prescribed for SIBO. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi guys, Has anybody any experience with passing surgical staples? I've been passing them for well over a year now, every few weeks. I get really sick, sore, urgency and really bad night sweats and then after about two days I pass 1 or 2 staples. By the the next day I'm feeling a ton better. Anybody any experience with this? [ more ]
Hi @amistem, I had problems in past when I had my jpouch with raw excoriated skin on my bottom. I had cuffitis and the skin on the outside was inflamed and irritated. The pain was 10/10. I used calmoseptine a lot as a topical. I was told that keeping it dry would help it heal, but it was almost impossible to keep dry when you are active and have pain. I took suppositories which didn't seem to fix but may have helped. Warm baths helped in the short term. I tried with bath salts in the bath... [ more ]
Hi all, I was wondering if anyone had any advice or an experience with excessive anal discharge/bleeding after a temp ileostomy and j-pouch procedure? I know the doctors say it's "normal" to have some leakage... they say it's mucus or a little bit of blood. But this is more than a little bit of blood; it's quite a bit. I think the stool bypasses the loop little by little and then eventually it comes out in one big mess. The first stool is so hard that it tears the anus and that makes it... [ more ]
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J-Pouch ForumsGeneral Discussion
Jan is right it takes a long time to get most of your energy back. Drinking water and having your iron checked is good advice. Everyone is different but you are certainly on the right sight. This sight helped me get my life back. Every ones input helps so I thank everyone here for all the advice that is given to me. Good luck Grace [ more ]
Dehydration can cause tiredness, if not detected, it can easily creep up on you after a good nights sleep. An insufficient fluid intake for a hour or so before bed, then no fluids for a further 8 hours whilst sleeping and maybe an insufficient fluid intake for another couple of hours, once awoken the next day; that's 10/11 hours without fluids. Before my takedown and due to less of my small bowel to absorb fluids; I suffered from dehydration which resulted in Kindney failure and it's such a... [ more ]
Hockadoo did a great job in this post. Hate to say it but you are part of a special group. Welcome to the club. [ more ]
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J-Pouch ForumsGeneral Discussion
Yes I also experienced electric shock. I was being sedated for a scope couldn't find vein tried top of my hand and I almost jumped off the table. I had tingling in my hand all day. I now refuse to have a needle put in my hand. [ more ]
Ah, great that people understand each other on this board. Electrocution, I tell you! [ more ]
Yup, had it happen a few years ago when a tech hit a nerve while trying to give me an IV. At least the tech with you only got a few blood splatters! I hit mine -- no lie. To be fair, I am really hard to stick, they hadn't warned me I needed an IV so I was really nervous (making my veins go into hiding even more than usual), and they had already stuck me unsuccessfully twice. When he hit that nerve it was exactly like being electrocuted. There was absolutely no thought process whatsoever;... [ more ]
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J-Pouch ForumsGeneral Discussion
Along the way to getting a J-pouch one of the gastroenterologists I consulted said, "You know, you don't need a colon at all! So what if you have multiple bowel movements per day!" That was all she wrote.......over 10 years ago. She was right! [ more ]
My colon was also taken out due to dysplasia. It was low grade to indeterminate dysplasia at first. We did another scope 4 months later after upping my UC medication to make sure it wasn't just inflammation. 4 months later, the biopsies revealed several areas of moderate dysplasia, which meant it was time for my colon to come out. Surgery was within a couple months of that. When my pathology came back after my surgery, I had several areas of high grade dysplasia as well. So for me, I went... [ more ]
funny story, well not too funny. I had my colon out due to low grade dysplasia throughtout. When i had my jpouch done, the final biopsy result on the colon stated no dysplasia!! And I had the second opinion done at Cleveland Clinic with a fluroscope with special dye. [ more ]
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J-Pouch ForumsK-Pouch Korner
Originally Posted by Rosie128: Prayers and well wishes for a speedy recovery. Just listen to your body, everyone heals on their own time, and I agree with Sharon, as we get older the bounce back time is a little greater. Wishing you and your new pouch the best! Keep us posted! Dear Rosie, Thank You for the well wishes and though it is slow I am making progress. One of my largest challenges is that I am very isolated and have little family left and friends (local) are a commodity that is... [ more ]
Prayers and well wishes for a speedy recovery. Just listen to your body, everyone heals on their own time, and I agree with Sharon, as we get older the bounce back time is a little greater. Wishing you and your new pouch the best! Keep us posted! [ more ]
Originally Posted by skn69: Hi Will, Welcome home, From what I remember I was exhausted and needed a nap after every effort...a shower, making my bed, walking around the block. 20yrs ago you were 20 yrs younger so it is normal that you should be so tired now...give you body the support that it needs...light protiens like chicken or fish, lots of hydration like diluted juices, low acid foods like apple sauce and bananas. All will give you energy and low residue for your pouch to heal easily. [ more ]
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J-Pouch ForumsK-Pouch Korner
"""Hi Will, I'm so happy for you! So did Dr. Schiller make you a new K Pouch or a BCIR? Debbie""" Yes Debbie, Dr.Schiller did a full replacement of my pouch that was made about 20 years ago and I am starting fresh. It is the BCIR Barnett as I understand it. Dr. Schiller actually worked with Dr. Barnett so I am very happy to have this part of me made well and of course am tired and still feeling all the healing pains. There was another patient there as well that also was receiving a new pouch... [ more ]
Your very welcome Will. Keep in touch about your progress. Ray [ more ]
Hi, I wanted to just make a quick post to all and especially "Ray" as he referred me to Dr.Schiller. I have just returned home after a full Pouch replacement. ( the valve revision was needed but once they had me opened up it was obvious I needed a full replacement) This is just one of the many reasons I wanted a experienced surgeon, and Dr. Schiller is indeed #1 for my situation. I was in the hospital for just less than 3 weeks. Because of the massive antibiotics and such I ended up needing... [ more ]
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J-Pouch ForumsHelp! Need advice now!
If the surgeons are convinced it's Crohn's Disease they probably won't offer a K Pouch or BCIR. [ more ]
I had to have my j pouch of 30 years removed due to a recurrence of high grade dysplasia. My surgery involved pouch removal and creation of a BCIR. The surgery went well and I had a full recovery within 6 months. Although this is a somewhat difficult surgery, a surgeon with j pouch experience should provide you with good results. When faced with the decisions regarding my surgery, I definitely wanted to avoid having an ileostomy based on quality of life issues. I was especially concerned... [ more ]
Thanks everyone!!! I guess my main concern is that hopefully they can get the whole j pouch out without complications. But it's got to be better than the problems I'm having now, my fistulas are in my vaginal area and rectal area so I have like 3 leaking spots. Haven't been able to be intimate (had to break it off with my fiancé because he complained everyday how he wasn't having sex) (well it's freaking painful!!!!) I just want my quality of life to be better, and hopefully find someone... [ more ]
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J-Pouch ForumsK-Pouch Korner
Can you get a second opinion to see if it is actually Crohn's? I know sometimes it is hard to get an exact diagnosis. Prior to my k-pouch they waffled back and forth with the option that it might be Crohn's and then they decided it was colitis. I don't think there is a definitive test to prove Crohn's (please correct me if I am wrong, anyone!) Did they in fact try to treat the pouchitis with antibiotics and anti-inflammatory medicines? Saying a prayer for you and keeping my fingers crossed... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dear CeeeCeeee; That helps. I guess like all the rest I will individually learn with the help of a nurse. The food thing is in the same category. I will be learning especially post surgery. Enjoy today. Thanks again. Rich [ more ]
Oh, I just remembered.........I used an ostomy belt and a home made cloth pouch pinned to the inside of my undies to support the weight of my baggie as it filled up. Both of these really helped! [ more ]
Regarding the weight question.....we all seem to differ on that one! Some of us lose weight and can't gain. Others (me) are challenged with weight gain which is difficult to lose! In my case, I finally could eat and drink whatever I wanted......and did! How often the baggie needs changing? Once again, it depends! My output of effluent was liquidy and, therefore, heavy! "Things" (the baggie) filled up quickly. I liked it liquidy because it was very easy to empty! I did so whenever it seemed... [ more ]
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J-Pouch ForumsGeneral Discussion
I'm on Humira injections every week. Immodium and Bentyl when needed. I'm also taking Vitamins. [ more ]
It's also important to keep your expectations reasonable for pouch removal surgery. Crohn's has attacked your pouch, and that misery can be excised, but Crohn's can also attack any other part of the GI tract. With or without surgery you may need medications to keep the Crohn's in control. [ more ]
I'm on cipro and flagyl now plus diflucan. Its just miserable. My doctors are hopefully making a plan now. This is the only problem that I have besides the occasional days where I'm just exhausted. Thanks for the advise. I will look at the other topics and ewad through them. [ more ]
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Join Us!
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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