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J-Pouch ForumsGeneral Discussion
chemotherapy and J-ponch
BH Bama Hiker
Jeff D Best of luck to you Bama. I had chemo every other Monday, would try to drink enough fluids while I actually stayed awake from that Monday-Wednesday. Then, I went back on Thursdays for fluids. This routine really helped me after I was hospitalized for dehydration. [ more ]
MicheladelfinaTX Crossing my fingers for you and keeping you in my thoughts. [ more ]
skn69 I am so sorry Bama, Good wishes and best of luck...a Picc line is a saviour for a lot of us...I blessed mine during a nasty series of surgeries...they can keep you hydrated and as healthy as possible without having to poke you 10xs a day. Keep us the morale...you will need it...and do not neglect the power of laughter...keep yourself surrounded by happy people and lots of funny movies...they do make a huge difference. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Uceris (Budesonide) Rectal for J Pouch Pouchitis/inflammation?
I ian337
CTBarrister Jeane, Ironically I also sent an email to our mutual GI, just asking him if he thinks Uceris foam is a feasible treatment for the J Pouch, and providing a link to the article about FDA approval which the OP posted above. [ more ]
jeane Thanks. I emailed our GI to ask when we can get a script. Internet says. It until Jan 2015. [ more ]
CTBarrister Jeane, They would probably help you more than me if the issue is at the J Pouch outlet. Good luck with it, if you try it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula Repair
K K78
Megan O Right? It sounded crazy scary to me at the time also but if it could fix my fistula I was willing to try it. I have three scars on my inner thigh. First one is just up from my knee, it's 3 inches long. Midway up, there is a 2 inch scar. At the very top of my inner thigh the scar is about 4 inches. In that upper area, my thigh is a bit larger, since that is where the muscle is doubled back on itself. Personally, the scars never bothered me, the slight bulge, does rankle a little, but... [ more ]
K78 Thanks for the replies. Megan O- The gracilis muscle repair was suggested to me by my surgeon. Sounded very scary and super invasive. Can you tell me more about it? Did you lose a lot of strength in your leg? Is there a large incision? Thanks so much. [ more ]
Megan O My rv fistula was repaired using the gracilis muscle reposition. This was performed after a fourth degree laceration procedure failed. The gracilis procedure was a complete success! I had it done in 1985. [ more ]
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J-Pouch ForumsMen's Health
Protein
K Keane
skn69 I have found that certain soya based protien powders turn my output to a thick, gluey gunk that does not seem to want to empty properly (have a k pouch and have to intubate to remove it...it is yucky). I would ask for samples from different manufacturers and see how each one works on you. I do better with Whey powder than anything else...there is also dried peanut butter that works nicely...nut butters are naturally full of high grade protiens and are easily absorbable. Sharon [ more ]
Daleer I don't know if it will cause problems for you. I've had a j-pouch since 2006 and been using protein powder for the last 8 years without problems. Try a little and see how it goes. [ more ]
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J-Pouch ForumsGeneral Discussion
Puzzling CT results
D davebree7
davebree7 Thanks everyone for taking the time to respond. We had another radiologist look at it. He said my small bowel is enlarged and dilated and that's what the other radiologist thought ws my colon. He said he's not familiar enough with Jpouches to know if that's normal or not. He suggested I call my surgeon and see if she will look at the scan to see if everything looks normal to her. [ more ]
Spooky Agreed. Radiologists will go by what they know, and it's very possible that many of them haven't even seen a pouch. At the end of the day, it would be the surgeon or the GI's opinion that I would go by. In fact, I have my own similar story. I was in the ER once with obstruction-type symptoms. The x-rays came back with something like "suspicious bulge in lower right quadrant." The ER doc wasn't very familiar with pouches and admitted the same. So I immediately emailed my surgeon (who was in... [ more ]
Jan Dollar As stated before, unless the doctor who wrote the order for the CT specifically states on the referral that you are post restrative proctocolectomy (or something similar), the radioogist is going to go by what things look like. The radiologist often does not have access to your medical record and is just looking at films. If you have adhesions causing partial obstructions, you can get dilated loops of bowel. They could even be felt as a mass. Your GI should be looking at the films, not just... [ more ]
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J-Pouch ForumsOstomy & Skin
Jeans
LHettiLHetti
skn69 I'm wearing a fitted, 3/4 sleeve, scoopneck black t-shirt today from the maternity colection. It looks fitted but does not cling, has some sheering/pleating on the front sides to created a loose effect over the tummy and the front is longer than the back. Kind of almost to the top of the tights...wore it with flat black sneakers (Sexy Guess ones), Black jeggings and a little trimmed cardigan over it...my perfect work uniform. Nobody knows that I have a kpouch even when it is uncooperative,... [ more ]
Lambiepie Ohhh, early pregnancy bathing suit. Brilliant. I'll bet that look you described yourself wearing looked fabulous! I tend to wear looser, bohemian tops anyway, so it works perfectly for the "ileo" look. I also bought a couple of Bebands from Target in preparation. I'm planning ahead more this time as this time is permanent. No muu muus for us! [ more ]
skn69 Lori, I love my flea/farmer's market...(no, there are no real fleas...I hope)...I get all sorts of end of season stuff for peanuts... The maternity unddies and bathing suits were wonderful...they were sort of like for a 4 -6 month pregnancy and not 9 months with triplets so they worked great...I still use them when I am very bloated or swollen. Vanity fair and Olga also make tons of spanx type undergarments that I find fabulous...I use 'slimming' leggings that massage my legs/hips with... [ more ]
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J-Pouch ForumsGeneral Discussion
catheter for j-pouch question
pouchingtonpouchington
Kushami Oh, I forgot to mention, there is an anaesthetic gel sometimes used called Instillagel (a UK product). I have asked my doctor to prescribe me something similar. Reading other people's suggestions and difficulties is helping me feel a little less alone, but catheterising is not an easy matter! [ more ]
Kushami Thanks for the suggestion, Sharon. I will see my pharmacist tomorrow and ask about that. He is getting used to me asking for odd pieces of equipment [ more ]
pouchington No not having success either. Might try the wider single hole type next. [ more ]
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J-Pouch ForumsGeneral Discussion
Help me understand the science behind binding mechanisms
I iHateColitis
JJA Yup-starbursts have pectin. Pectin is what is added to fruit when making jelly, to help it gel. When my son had diarrhea as a toddler, before they figured out he had H Pylori and a torn up gut, the GI recommended pectin as a way to try to firm him up. I have damaged sphincters and do best when my stool is as thick as possible. I take 8 Metamucil capsules, 2 immodium, and a codeine before each meal. If I have had too much insoluble fiber (i.e. raw fruits/veggies, popcorn, nuts), I try to... [ more ]
gela pectin? marshmallows also [ more ]
Lesandiego Starch? Pasta, rice, potato..... I eat a lot of these as side dishes with some protein and achieve a consistency of porridge. I know that with dairy, I will achieve the opposite effect. [ more ]
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J-Pouch ForumsGeneral Discussion
Biopsy and MRI results
B Boda
Boda Thank you gela. The Rhumatologist ran some more blood test today and we will have the results later in the week. She said mild arthritis in her knees and she will talk to our GI doctor about which meds are best. It sounds like we are looking at either trying to treat the cuff with Canasa and the knees with cortisone shots Or start Methotrexate. [ more ]
gela I am so sorry your daughter is going through this. We won't ever understand why children have to suffer. I will pray that the doctors find a treatment that works for her soon and the pain will subside. God bless her! [ more ]
Boda Thank you Rachel. I am trying to be positive for her but it has been so difficult for her. One complication after another. I want her to be able to do activities and feel good again. One of our other daughters was diagnosed with a different autoimmune disease a few months ago. It has been very difficult for all of us. It is nice to hear from someone else that can relate sometimes we feel like other parents/children don't really understand. [ more ]
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J-Pouch ForumsGeneral Discussion
what do these results mean?
pouchingtonpouchington
Scott F What the results mean depends (IMO) entirely on how you're feeling. You don't have microscopic (pathology) evidence of roaring pouchitis, but you *might* have mild or moderate pouchitis, depending on what your doctor observed and what symptoms you're having. The Heidelberg scoring system combines clinical symptoms, observations during pouchoscopy, and pathology (how the biopsies look under the microscope). Each can score up to 12 points (more points mean pouchitis is more likely). Heidelberg... [ more ]
pouchington Thanks Jan, I will be following up with Cleveland clinic GI team in a month to see what's planned for me. [ more ]
Jan Dollar ALL pouches have some level of inflammation on the microscopic level, so it is the degree that is important, not the fact that inflammation is present. There is one biopsy of three in this report with more than mild inflammation. It may or may not be significant. All pathology reports need to be taken in consideration of the clinical findings and visual inspection by the physician doing the scope. The most important findings in pathology reports are in regard to dysplasia, neoplasm, or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscess opened/drained - home with packing - please help
W wsh6745
wsh6745 Thanks for asking John. I'm doing much better. I had a follow up appt last week and the entrance of the drainage site wasn't healed and could fit the head of a q-tip in there so he is concerned that it may be a fistula or that it may get infected again. In order to help it heal, he used a chemical to cauterize it - that was not fun. It was uncomfortable for a day or so but I feel pretty good now. I have a barium test and pouch endoscopy scheduled for Oct 21st so he is going to check the... [ more ]
John95 How are you doing now, Wendy? Better I hope! [ more ]
TE Marie Your husband sounds like a keeper I'm glad you are feeling better! [ more ]
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J-Pouch ForumsGeneral Discussion
Exercise..... a MUST -but a Rebounder???
Wanna Be HealthyWanna Be Healthy
CTBarrister Here is the JB Berris video showing usage of the extreme urban rebounder: http://www.youtube.com/watch?v=1_h24fMi2tI [ more ]
dawn58 You can google or youtube, urban rebounder and you will see many videos of an urban rebounding class. The founder is JB Berns. You can google him too, and watch one of his classes. Jumping on a rebounder is much easier on your joints, and muscles than the ground, which is not as forgiving. You can also hold onto a stabilizer with a rebounder. Don't know about the insurance thing, just that you can get for a rebounder much easier than you can for a trampoline. Obviously, you can always get... [ more ]
skn69 I am no expert but have used a rebounder during physiotherapy and the reducation of my legs after my gracillis muscle flap surgeries. 1st off, they have a very limited size surface area and the density of the fabric and spring is such that you really can not jump on them...or shouldn't...they are used to walk, bounce a bit and do light aerobic movements and not to fly up and down like on a trampoline. I was actually put on one with a removable 'walker-like' contraption around it on 3 sides... [ more ]
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J-Pouch ForumsPouchitis
Cuffitis
B bratcat
Rev Lenny A further report on my undercarriage; all is now going well, and the healing process is almost complete. My regime consists of washing my undercarriage with warm water, then patting the area gently dry; then I massage some Colloidal Gel into my skin, then a layer of Comfrey Cream. After my final visit I apply Calmoseptine, so all in all I am more than pleased with the progress - especially considering how red and blistered the skin was and how sore it was when washing. Hopefully this may be... [ more ]
Rev Lenny Thanks TE Marie - again! Three days of Comfrey Cream + Colloidal Gel and on retiring to bed Calmosptine and my undercarriage is almost back to an acceptable level. The anal fissures are also in remission! They can be so painful, but an application of vaseline before emptying the pouch can ease the pain/discomfort; but through the different levels of pain I have learnt to speak new languages!!! I would definitely recommend Comfrey Cream for anal fissures, also it is good for a multitude of... [ more ]
TE Marie I'm glad you are feeling better. [ more ]
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J-Pouch ForumsGeneral Discussion
had my first followup, severe irritation
allswellallswell
CeeeeCeeee Using my bidet to spray hot/very warm water up and inside the anal opening is very soothing for me. Have you thought of investing in one? Plus.....it really keeps the area clean without rubbing with TP. [ more ]
allswell The cuts are all on the inside and the suppository was painful once inside. I go and right after have to go again. I'll see how the foam is, but haven't heard back from doc yet.i wonder if stool is coming through and sitting in the canal. It's not coming all the way out though unless I push. [ more ]
Pluot You are right that proctofoam would be better for staying low than a suppository. You can also take some of the excess foam from the applicator (not sure if you've used it before, it will be obvious when you see it) and just apply it to the outside area with your finger. Being "wide open" just means you're not strictured, it doesn't mean you would go more or less often. Anal irritation usually comes from either eating high fiber foods (doesn't sound like you are) or from having so many bowel... [ more ]
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J-Pouch ForumsPouchitis
Pouch it's? Or could it be more?
MelBMelB
JJA Yes, there are degrees of miserable with pouchitis. Although I successfully took Flagyl many times over 20 years, the last time I took it I had a base reaction-major nausea, inability to concentrste, weepy, etc. My pouchitis symptoms were we're than ever PLUS a bad reaction to the antibiotic. Best of luck- [ more ]
MelB Not sure. I guess they figured all the nastiness was caused by the pouchifis and not the meds. [ more ]
CTBarrister Hey Mel, Were you taking the cipro and flagyl on an empty stomach? It's best to take them with food. I am a little curious as to why they would attempt to put you back on oral antibiotics that had sickened you. Obviously they can't IV them forever, and they are likely encouraged by your response to taking them by IV, but they are not the only antibiotics used to treat pouchitis. Good luck and hope it works out for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Quick Question about recent scope
Khaos247Khaos247
Khaos247 Thank you, that puts me at ease knowing it's routine. [ more ]
jeane Some of us are probe to inflammation at the anastomoses. As Jan indicated, biopsies are pretty routine because most of us still have a very small segment of rectal cuff left (anastomoses) where pouch is attached to. Doctors like to keep an eye on this area in the event a biopsy shows dysphasia ( pre cancer). I am sure you have nothing to worry about if you are feeling well and routine scope. [ more ]
Jan Dollar I always have biopsies as a routine thing. It is part of normal surveillance. They will do more if there is something that catches their eye. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Colonoscopy, Oct 9th, 2014 (9-9;30am start time)
L Len1978
Jan Dollar Unfortunately, time is short. Your plan seems fine, but we are each individual, so what is fine for one, is nor fine for all. I would stick with what has worked for you in the past. You need to discuss this with your doc, so you can have a plan for the future, as your surveillance will be life long. Jan [ more ]
Len1978 Jan, Osmo prep. I have one full dose that just expired left, the bottle says 8/2014 expiration. I was wondering if i could take that one dose and the 4 biscodyl tablets and be cleaned out enough for the scope. my gag reflex is terrible, i cannot drink miralax mixed with anything, be it gatorade or power ade even! i called the nurse of the dr doing the scope on the 9th. I left a message stating i had a jpouch and wondered if there is any way to get around not doing miralax all together. Just... [ more ]
Jan Dollar I really don't know Len. That is why I suggest you contact the doctor. The fact that you always have polypectomies is not really a factor. The ducolax don't really purge (clean out). They just get the gut moving. There always will be some bile coming through and they just rinse it away through the scope. What prep have you done in the past? I would just go with what you know works. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Confusing results
BebeksporBebekspor
Jan Dollar CRP and elevated WBC are both non-specific tests and I would not be wanting to jump on invasive procedures without more specific information. I'd be wanting something more on the order of a small bowel series, abdominal CT or MRI first. Of course, your doctor does not get paid for those. I am not saying that is the reason for the recommendation, but.... I am not in favor of scoping at the drop of the hat. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Calling all failed j pouchers and end ileos who want a change
skn69skn69
skn69 Hi Sarah, A good and competent colorectal surgeon could possibly rebuild your j pouch and make it smaller and less floppy...in the meantime you could self catherise yourself by using a 28-32 medena or other rectal catheter. It even allows you to irrigate your pouch to remove as much fecal matter as possible...it is an alternative. Some k pouch surgeons reuse the j pouch, especially if it is not suffering from chronic pouchitis. In your case it could possibly be cut down to size and... [ more ]
BillV Sara, here are my two bits on your questions. You would have either a J pouch OR a BCIR (or related K pouch), but not both at the same time. Typically, for a failed J pouch, it is removed and then the BCIR or K pouch created from a remaining part of your small intestine (30 cm or so). I have read that in a limited number of cases, the J pouch can be used for your new pouch, but your surgeon would need to make that decision during surgery. You should have plenty of small intestine left to... [ more ]
Kushami Hi skn69, I have a question about the BCIR - how does it work if you already have a j-pouch? My j-pouch has gone "floppy" after 14 years of good service. Presumably that part of the bowel cannot be used again for the K pouch. So would having the BCIR mean they have to take a bit more of my small bowel to make the K pouch? Thank you for posting information and letting people know about alternatives. Cheers, Sarah [ more ]
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J-Pouch ForumsGeneral Discussion
3rd Surgery
G Goody21
Spooky My 3rd surgery was by far my easiest. No catheter, no NG tube, I was up walking around 24 hours later, and I had little pain. Best of all, I had no post surgical obstructions or ileus. Yay surgery 3! *LOL* As others have noted, you may, however, experience some rectal spasms and butt burn. Initially you may also feel a need to empty your pouch quite frequently. This is all normal and will improve with time. I noticed big changes especially about 8 weeks out. One thing, they left my stoma... [ more ]
Shainy from what i've read, 3rd surgery is usually a lot easier in terms of pain and recovery. things to be prepared for are gas pains in the pouch, and butt burn but this should improve with time [ more ]
Goody21 Early July [ more ]
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J-Pouch ForumsGeneral Discussion
Mucus Discharge pre-take down?
MahshelleyMahshelley
Shainy i am now almost 5 months since j pouch surgery. i haven't actually discharged any mucus in the last week or so. is this normal? it was pretty much daily or every other day up until now.... [ more ]
Mahshelley Good to hear I'm not the only one! I've been having to wear a heavy duty pad because there is so much coming out, and I can't control it. Very embarrassing in professional settings.. hopefully mine settles down in a bit here. I'm scheduled for my take down in 2 months. I hope everything is healed up and ready to go by then! [ more ]
Shainy my experience is similar to strange i had j pouch surgery on may12th. first 10 days i had some leakage, and i was going to the toilet quite a few times a day. i now dont have any leakage and i discharge every other day in a controlled way [ more ]
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J-Pouch ForumsGeneral Discussion
Aussie nurse with pouch care experience
K Kushami
Kushami Here are the things I've tried so far with the catheter: (Sorry Jan, hope this doesn't sound aggressive, but it just occurred to me this might help someone else or allow someone to better help me. It is hard to express yourself politely in this medium sometimes!) Lying down Standing up Crouching Sitting Moving between these three Single irrigation Multiple irrigation Holding water in for a while Coughing Massaging abdomen Wiggling hips Drawing abdominal muscles in and out Twisting the... [ more ]
Kushami Hi Jan, Thanks for the suggestion. I have tried irrigating but it doesn't help. I have thought about warm water enemas (not bothering about the catheterisation) as another option. [ more ]
Jan Dollar Have you tried irrigating with warm tap water to rinse the pouch? Basically tap water enemas. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
how to clean catheter?
pouchingtonpouchington
Melanie15 ❤️
Kushami Ah, "floppy pouch" - that is what I've got! Glad to see it has a name [ more ]
skn69 Hi Jilly, Long time no see.... The J pouchers who self cath usually do so for a couple of reasons...incapacity to empty their pouches otherwise (strictures, twists, floppy pouches)...sometimes the pouch contents are too thick so self cathing allows you to irrigate the pouch and get all of the residue out. Some people feel better when they irrigate on a regular basis too...they like a nice, clean pouch...some even feel that it 'prevents' pouchitis (no proof here). I am sure that there are a... [ more ]
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J-Pouch ForumsGeneral Discussion
What could be going on?
Mema 1Mema 1
CJB How are you feeling today Mema? I'm starting to think I am getting better, but it's slooooowwwww. And who knows how things will be when I am well enough to start tapering off the meds I am taking right now. I hear you though, it is frustrating and depressing when we're not feeling well. And I also have been dealing with this cuffitis issue on and off for almost a year now. Maybe you need more than just Canasa. Feel better soon, C-jay [ more ]
Mema 1 Thanks C-jay...we sound very similar. I felt fine yesterday, and I thought that I had rounded the corner, just don't get it. My cramping is more like a constant stomach ache that doesn't go away. I was okay all morning until I had the delicious jelly donut and pumpkin coffee and thought that maybe it had something to do with sweets. I, too, have urgency, and because I don't empty completely when I go, I'm back and forth until some of the ache goes away a bit. I guess I was feeling too good a... [ more ]
CJB Mema, I definitely have cramping when I have cuffitis. It is like a spasm, but creates a feeling of urgency. I'm also on Salofalk (canadian Canasa) and Proctofoam, and waiting to feel better. Seems to be a lot of this going around lately. Every night I go to bed and hope that tomorrow will be a bit better. Sadly Canasa doesn't seem to be super-fast working. Be patient (I'm losing mine)and come back tomorrow and tell us how great you are starting to feel. Hope you feel better. C-jay [ more ]
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J-Pouch ForumsGeneral Discussion
Tags
G GraceB
Spooky Yes, I have a rather large skin tag on my anus, which my surgeon is aware of and is unconcerned about. I believe I developed this within the last 2-3 years. My surgeon has advised against removing it, as there can be complications with such procedures. As my surgeon put it, "removing them often causes more problems." The tag does not bother me. It has on a couple of occasions become irritated but Calmoseptine resolved the issue. It's unsightly to be sure, but it's not really as if anybody... [ more ]
MicheladelfinaTX I have one, but it doesn't cause me too many issues. [ more ]
ccanepa456 I have several skin tags on the outside too and the doctors don't seem too worried about them, but I never had them until a few months after takedown. [ more ]
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J-Pouch ForumsGeneral Discussion
One Year Anniversary October 14th
MysticobraMysticobra
skn69 Happy Pouch Birthday Richard, SO, you got a 1yr old...congrats...and I hope that he lives many, many happy and healthy pouch yrs (not sure if it is like dog yrs...but you never know). I've got a k pouch so the rules of engagement are a bit different...But the fundamentals are still the same. You just never know...kind of like life. I have had yrs where I lived off of bread & cheese...now they are poison. Things that I ate from the begining are now off limits (had 2 chocolate croissants... [ more ]
rachelraven My whole experience for 20 years was predictable and easy, after my pouch was formed. By four months after takedown, I was commuting to full time nursing school/college and working 20-30 hours a week, too. I never had incontinence after about 6 months, and when I had some, it was mild and only at night, OR sometimes after that if I was really ill (like if I'd had the flu or something, and was sleeping the "sleep of the sick," sometimes stuff would slip out). I never required bowel thickeners... [ more ]
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J-Pouch ForumsGeneral Discussion
How bad is this going to be.
D dtmack
MicheladelfinaTX Good luck this morning! [ more ]
dtmack Laura, Thank you so much!!!!! I head in on Monday. Your post was exactly what i needed. I hope my outcome is as positive as yours. I will pm you later and let you know what has happened. Thank you again so much. I am truly happy to hear you feel so well. Talk soon Derek [ more ]
LHetti I'm sorry, too! I hate disease and holes where they shouldn't be. The decision to remove my pouch was the hardest decision I've ever made. My ileostomy is permanent and permanent is permanent. And I was 34 years old and I still can't believe it was time to say good bye!. RIP, jpouch. I had my 15 year old pouch removed this April. Maybe you already read my other posts about it. I'm doing awesome and it's been 5 months. Yes, it's a major of major surgeries. But, yes, by God's grace, I did... [ more ]
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J-Pouch ForumsGeneral Discussion
RV fistula and EUA
BebeksporBebekspor
MicheladelfinaTX I developed an RV fistula about 3 months after my first takedown; we had always suspected Crohn's and that kind of made it official. At my surgeon's suggestion, I was re-diverted back to a loop ileostomy and began Remicade treatments for 8 months. That healed the fistula a great deal, so that only a small surgical repair was needed once I was done, and I was reconnected in June of 2008. Since then I haven't had any recurrence (knock on wood) and still take Humira weekly, among other drugs,... [ more ]
Bebekspor These are very hard choices. I'm sorry for what you're going through. I'm not opposed to trying remicade, but if that fails I'm not going to consider surgery unless my quality of life becomes so bad. Hopefully it will not! Katie [ more ]
CJB Katie, I developed an RV fistula after about 11 years with my j-pouch. My pouch is now 18 years old. My diagnosis has never been changed to crohns, even though my fistula appeared so long after the surgery. I suffer from cuffitis also, and that makes my fistula more active, and I feel pain/soreness in my vagina. Otherwise (when I don't have cuffitis) my fistula doesn't really bother me. And it seemed easier to just deal with it than deal with a surgical attempt at repair, or a trial of... [ more ]
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J-Pouch ForumsGeneral Discussion
Iron deficiency anemia
Jan DollarJan Dollar
ElmerFudd Holly - as Jan said, it's never as simple as we want it to be. NSAID's are taken for chronic lumbar fasciitis and fibromyalgia. I'm also on Lyrica, which does seem to help, but NSAID's have become somewhat of a mainstay for pain too. Obviously, I know it's not good for my stomach or pouch - just a matter of deciding which is worse. Regarding PPI's or other acid reducers taken on a daily basis, I think for me PPI's have been #1 on my list of pouch-helpers. Once on them, I have stopped the... [ more ]
Scott F It's generally pretty easy to distinguish iron deficiency anemia from B12 deficiency on the usual blood test. For this question, at least, your doc has probably worked out which it is. [ more ]
Holly HM When I developed pouchitis my GI told me as long as I had my pouch not to take any nsaids. He said that would make the ulcers in my pouch form or become even worse. I haven't taken any in over a year. I just had blood drawn for my surgery. I am having pouch removed in two weeks and going to an end ileo. My HCT was 40.3 and hemoglobin was 13.3 which is fine. I hope you are able to find a way to get your blood count up. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis and RV fistula
CJBCJB
n/a My fistula originates at the dentate line, so very near the anastamosis. I've had non-stop cuffitis, but I don't think it affects the fistula, although that's hard to say, as my fistula has a constant, mild discharge of yellow-green stuff. I don't have much pain with cuffitis. What affects my fistula the most is if I hold my poo too long, or have more gas than usual, or if my poo is too watery. Are you still using mesalamine suppositories? Dr. Shen had me taking both canasa and anucort... [ more ]
rachelraven Mine is not even near my anal anastomosis. It's below it, just a simple perianal fistula. Has no connection to my pouch. [ more ]
CJB Wow, just goes to show how different we are. Or maybe our fistulas are in different places. Mine seems to be very low down in my vagina. When I have cuffitis I get these spasms and they seem to force a gush right out of my vagina. Can't tell you how gross and discouraged I feel these days. C-jay [ more ]
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J-Pouch ForumsGeneral Discussion
meds make you have dreams?
G gela
Scott F Many side effects only happen to a small subset of the people who use a medication. The fact that one person doesn't experience it isn't very strong evidence of anything. The fact that it's not been reported after many thousands of uses isn't perfect, but it's much stronger evidence. [ more ]
CTBarrister I think it's a coincidence. I have taken cipro and flagyl for 20 years in rotation with other antibiotics, and have not noticed any connection between taking them and vivid or nightmarish dreams. I do have a recurring nightmare, but it's independent of any meds I am taking because I have had it while taking different meds. I talked to my buddy who is a psychiatrist about the recurring nightmare (mainly because he was a character in the latest incarnation of it), and he told me it was being... [ more ]
Scott F Vivid dreams aren't a reported side effect for Cipro or Flagyl. If they are helping you sleep better that could be a more innocent explanation. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
What does acidophilus do?
I iHateColitis
mgmt10 Acidophilus is a friendly bacteria, commonly referred to as probiotics. Basically they aid in digestive health and your immune system. If you take antibiotics they can kill the good bacteria in your gut. Taking probiotics will help replace what was lost. I don't have any real issues with my j pouch nor do I need to take antibiotics but I do take probiotics daily. I take Digestive Advantage gummies. They are just right for what I need. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Peristalsis, loop ostomy vs.j-pouch?
ATXGuyATXGuy
CeeeeCeeee Just an aside.....having learned the term "peristalsis" in high school physiology I seemed to know what it is almost all of my life. However, I was absolutely thrilled to watch one of my scopes on the monitor when lo and behold my innards began the process of peristalsis and I actually knew what was happening by just watching it! Mr. Jones, my physiology teacher would be proud of me! [ more ]
Scott F The atropine in Lomotil isn't adequate to serve as a useful antispasmodic at recommended doses. It's added to reduce the abuse potential of the drug, by making it unpleasant at higher doses. [ more ]
CTBarrister ATXGuy, LOL, I think bentyl made me a half zombie, but donnatal was much milder, and I think levsin is perhaps slightly milder. You may want to ask your Doc what other anti-spasmodics out there are milder because I do not believe these are the only two. Maybe you can also cut the dosage or get smaller dosage pills. Lomotil may be another choice. I believe it has anti-spasmodic and antidiarhheal properties. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Cuffiitis meds - need help!
CJBCJB
JHendrix Thanks Jan. My suppositories are 500mg so I'm guessing I should stay with the once per morning/one at night. Do you need to taper with this medicine? [ more ]
Jan Dollar Typical dosing is once daily at night. The current suppositories are 1000mg. They used to be 500mg, but they stopped making the. Studies showed that 1000mg daily was as effective as 500mg twice a day. I initially took them a month at a time per flare, then taper off to once a week or so. But, now that I take oral sulfazine and Simponi injections, my flares are infrequent and mild. Now, I just need to use them for a week or less. Symptoms of cuffitis are the same as pouchitis (increased... [ more ]
CJB JHendrix, My surgeon originally prescribed one suppository per night for 30 days. But I was feeling way better after 2 weeks, so started a slow taper. This episode though, I am taking one in the morning and one in the evening. I am having a lot of pain and it is definitely more sore on one side than the other. I'm still hoping it's just cuffitis but starting to worry it is an abscess. I have no fever though. Mema, I feel your misery. Blah, indeed! C-jay [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
atypical glandular cells on pap smear
N nbm
skn69 Please do not ignore the advice and do those pap smears. Not sure of the number or percentages but pouchers have a higher rate of certain medical problems...if you took pred it is even higher. I tended to ignore requests for bloodwork and pap smears and then paid the price later when things got out of hand...so please be vigilant. Sharon [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Polycystic Ovarian Syndrome and ovarian cysts
G gela
skn69 Hi Gela, Don't know how old you are but... I had ovarian cysts while in my 30's...some rather large. They caused a lot of problems (have a k pouch so liquid stools were not a problem for me) including pain, swelling and pouch discomfort that resemble pouchitis, excruciating pain during sex... but I do not remember diarreah. That said, ovarian cysts wreak havoc on your hormones and cycle and that can cause incredible bowel problems. When the body releases certain hormones (around your period)... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Hysterectomy
R ratwoman75
skn69 Hi Ratwoman, I will answer what I did for KSR, I was polycystic, had salpangitis and various other girly problems...I refused the hysterectomy because I was young and still full of hope for kids but my surgeon told me that a hysterectomy would not be a problem for me (a k poucher) because they organize the organs on 'a shelf' in such a way that they all find their spot. I was worried about things shifting or collapsing but he said that they use mesh or sutures to keep them all in place. In... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
j-pouch and hysterectomy
ksrksr
skn69 Didn't have the hysterectomy but had multiple cysts removed from down there (way polycystic) and salpangitis...And the discussion about the hysterectomy with my surgeon. According to him it should not be a problem. I did have desending organs at one time and my surgeon 'put them all on a nice little shelf' as he put it...made for a nice image in my brain...kind of like a teapot and cups on a shelf! Told me that that is exactly what he would do for me if he had to do the hysterectomy. Not... [ more ]
ratwoman75 I have had both. No I haven't had any problems other then normal hysterectomy issues. The only thing I have problems with is that I can't absorb the pills I have to cut them or have the patch for estrogen. But other than that it went well. Just a long surgery because of surgery scar tissue. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Any helpful information
TiberiusTiberius
Scott F You don't mention antibiotics. You might have untreated pouchitis. Cipro could be worth a try. It seems to usually work within a day or two when it workss for someone. Also, have you been tested for C. diff or CMV, or other infectious causes? [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Bidet question
Mema 1Mema 1
Mema 1 TE Marie, I left you a PM - never noticed that you had sent me one quite a while ago. I can't believe that you clean the seat with mild detergent, although perhaps because my seat is so old, and has been bleached so many times, the finish has worn off. I did check out the bottom of the seat when I was in the store the other day and couldn't believe all of the crevices. The store only carries Toto to my knowledge. Thanks to all who offered their input on a bidet. On another subject, it's... [ more ]
TE Marie I understand what you are talking about now, dah! I get the spash effect underneath and am sure there's some canasa in it. I think that is what makes the bowl etc. more difficult to clean. I can only use mild detergent to clean the seat underneath and it cleans off with no staining. Mine is a COCO purchased this year. I'd ask the companies that question as it is a good one. Are the seats stain proof? [ more ]
Kushami Hi Mema 1, I don't have a bidet yet but I used them a lot in Japan when I visited - most toilets there have them, even public ones - if I suddenly come into some money I'd definitely get a Japanese toilet in my house! Just wanted to sympathise with you on the stained toilet seat - me too. (I don't take Canasa.) For what it's worth, I've had some plastic seats that didn't stain and some that did. Same with ceramic. Seems more to do with the finish than the material to me, unfortunately. Good... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
What is the cuff?
K Kushami
Kushami Thanks, Rachel, that is very helpful I felt kind of silly asking about it after all these years. I guess I should be glad nothing has gone wrong with mine so I've never needed to know. [ more ]
rachelraven It's the 1-2cm left in the anal transitional zone (ATZ) where the new pouch is either stapled or sewn, which keeps sphincter function. The mucosa there can be "stripped" to try to decrease the possibility of disease in the area (mine was). It is called the "cuff," and it can develop "cuffitis," which is basically UC/IBD of that small area. Symptoms can be that of pouchitis, but also adds in bleeding more often than with pouchitis. They say that on digital exam, the cuff will feel "bumpy"... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Dr. Bo Shen Visit and Needle Knife Sinusotomy
aka KNKLHEADaka KNKLHEAD
jmurray Just had nk #2 and dr Shen is pretty confident that he will be able to fix hs sinus tract with a couple more procedures. My husband is enjoying the best sleep he has had in months and months. With all the amazing Boston hospitals and medical talent...we need to come to Cleveland to get him help. Thank god for dr. Shen!!! [ more ]
Nomoremeds I had Dr. Shen's KN procedure for two sinuses. The first one was treated without issue. As for the second one, he could not find it initially, and my surgeon at Cleveland Clinic recommended pouch redo. After having the first step of the redo (loop ileostomy), I had Dr. Shen take another look. This time he was able to find and treat it. After several visits (4), the 4.5" sinus is apparently now healed. I am scheduled for a take-down in a few weeks. Hopefully that will be the end of my pouch... [ more ]
jmurray Thanks for the info guys, I understand that everyone is different so hopefully this procedure will work for my husband. He is scheduled for #2 in Sept. Unfortunately, he doesn't have the luxury of a redo as Dr. Fazio re did his original pouch 9 years ago so this is already his second. Best of luck and wishing you both good health!!! Judy [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Any parents of children under 4yr old with UC?
S shaggy08
ElmerFudd Totally agree. Not blaming her in the least - I agree it is totally understandable and I was/am empathetic for sure. [ more ]
rachelraven Agreed that she is indeed very wounded by what her daughter went through. I can't really blame her; I mean, when my dtr was dx, I was so angry with God for striking my kid with it all, too (wasn't I enough?). But she (this mom) isn't the one to speak with about success stories, and there ARE success stories. [ more ]
ElmerFudd Shaggy08, Glad to have you on the site. Wish you didn't have to be here - it stinks when our kids have UC, doesn't it? I remember praying quite a bit when my daughter was first diagnosed. mgmt10's mention was my daughter, and she was diagnosed at age 6 1/2. She had j-pouch surgery right before her 8th birthday. Children's Mercy GI here in Kansas City told us the youngest UC patient they have had was 3 months old - still so hard to believe. Our Primary Care doc assured us initially that (even... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
immodium, lomotil
allswellallswell
TE Marie I use Loperamide which is prescription Imodium. I think it works better because it is in capsule form and makes it into my system faster. I've never tries lomotil so don't know the difference. I don't need to use it when I'm taking antibiotics but do use 2-4 per day when I'm not taking them. All of us are different and it's been trial and error and what am I eating etc. I wish there was a manual we could follow! [ more ]
betsaronie I found that lomotil actually gave me diarrhea, it is a side effect, oddly. Wal-mart brand immodium works best for me and is cheaper than name brand. it's the only thing I even go to that store for it works so well. Everyone is different, I agree with Scott, try them both and see which you prefer. [ more ]
Scott F They work similarly - both act on the opioid receptor in the gut. Imodium is said to increase anal sphincter tone, though it doesn't do that for me, I think. Imodium is OTC while Lomotil is a controlled substance (at a modest level of control). Lomotil is a little more like the other opioids; for example, it reduces withdrawal symptoms in opioid addicts. Lomotil has a bit of atropine added, which is usually fine at the prescribed doses but (by design) very unpleasant at higher doses. Neither... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Mobile ascending colon
D DaveInNorCal
Jan Dollar Good news that things are stable. Even if residents performed your Nissen, it does not mean it was botched. "Stuff happens" even in the best of circumstances. Jan [ more ]
DaveInNorCal By the way, I continue to be asymptomatic. I really appreciate all the help i have received from this forum and especially from you, Jan. [ more ]
DaveInNorCal I strongly suspect that the surgeon of record did not perform the Nissen. I was in the hospital for four days and never laid eyes on him. In my opinion, the residents botched it. [ more ]
See all 25 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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