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J-Pouch ForumsGeneral Discussion
What do you eat for breakfast??
dgtracydgtracy
Anushka Ive' been eating rice porridge with coconut milk, almond milk and lactaid. I sprinkle salt and cinnamon and dice up 1/2 banana. I've been pouring juiced strawberries or blueberries over the top also. For the porridge, I've mixed cream of rice with quick oats and left-over coconut sushi rice. I follow the bowl of porridge with an egg for protein. Seems to be working for me. I'm on the FODMAP diet, so am using lactose-free milk. [ more ]
Lesandiego I do not eat breakfast as digesting food causes me to have spasms. So, since I work 7am - 12pm, I can wait to eat lunch and dinner only. Never was much of a breakfast eater. If I feel hungry, I will eat a mini donut and/or toast with coffee. [ more ]
Scott F I start out with a *large* glass of water. I presume I'm dry after a night without drinking water. I then have Greek yogurt with a couple of VSL #3 DS packets mixed in, as well as blueberries, banana, and sometimes strawberries. I keep the portions modest (e.g. 1-2 strawberries, 12-15 blueberries). I chase that with some Metamucil powder in water, and then a couple of mugs of coffee with soy milk and some sugar. My mornings are usually fine. I wonder about the gastro-colic reflex Jan... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch waking up after surgery for obstruction
SG Susan Gilbert
skn69 Keep off of all solids until your gut green lights you and even then take it really slow...I was put on the new protocol post k pouch surgery...3 days I.V., 1 day clear fluids, 2 days full fluids and on the 7th day they fed me...I was thrilled, my pouch behaved, they discharged me...youppii! (it was Thursday)...the weekend went well, I ate reasonably (right!) and then on Mon, on the way back from my 1st post op appt I ate a bagel. 3hrs later I thought that a linebacker had tackled me. [ more ]
Markg Hi Susan, I just read your post and realy feel for you! I had my takedown surgery on 8th July and was sent home two days later, feeling sore but good. Then followed the most agonising two days of pain I have experienced since first being diagnosed with UC in 2011. I was recalled to hospital with severe abdominal spasms/cramps and was told I had an Ileus. I was then not fed for 6 days - free fluids only and then fed intravoenously for 4 days to allow my bowel to rest completely. Started... [ more ]
Susan Gilbert You are all great. I don't have an appetite but was eating a few bites of mashed potato. Asked a lot more ion hospital when on narcotics but of course that slows things down. It has Ben ten days and I am miserable yyou have all comforted me in my dark hour. I feel so blocked [ more ]
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J-Pouch ForumsGeneral Discussion
how do you sleep? what seems most comfortable?
dgtracydgtracy
skn69 It looks like a failed construction zone in my bed...small, medium and large pillows + a body pillow all over the place...I have 3 piled under my legs and thighs if I want to lay on my back but if I am on my right side (left is impossible because it makes my un-anchored k pouch flop over)I need the body pillow so I can throw my whole left side half way over it (fetal position with arm and leg flung over the top of it)...sleep feel like work nowadays instead of rest...every time a pillow... [ more ]
kta Interesting post. I could sleep on any side or my back for about five years post takedown. Then I had a horrible case of cuffitis along with something my doc had never seen before. He called it a fizzure for lack of a name for it. I was in a lot of pain and suddenly had to go every time I slept on my right side. This has slowly, as in over four years, gotten better, but to this day, I can only sleep on my right side if I have just emptied my pouch. I never thought this was a pouch thing. Now... [ more ]
PDXDavid When I'm having issues - which is most of the time - I start out on my back, in a slight inclined position. This seems to let me force myself to relax during spasms and cramps, without the feeling that I am about to lose control. It seems that changing positions is more likely to produce an urge to go, no matter which side it is, so I try to get comfortable and stay put as much as I can. [ more ]
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J-Pouch ForumsGeneral Discussion
Some news better than none I guess
SpookySpooky
Spooky killcolitis, Maybe it's covered for inpatients? Or, perhaps it's covered as a pediatric procedure. My GI discussed this at length with me in March and he even called to try to get me approved. That's something I can definitely ask about, though. As much as I hate the hospital, at this point, if I had to go in for a day or two knowing we could finally sort this out, I would do it. [ more ]
killcolitis I hope flagyl does the trick but otherwise just wanted to let you know that my daughter had the pill cam at the children's hospital last summer and it was completely covered. The issue of coverage/funding was not even raised? Odd. [ more ]
Spooky Considering we can get funding for this, I'd definitely request the test pill first. That's a very good idea. I'm not at all keen on the possibility having this thing hung up somewhere in my digestive tract. [ more ]
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J-Pouch ForumsHelp! Need advice now!
bio feedback physical therapist for pelvic disfunction
BM boy's mom
beckysmom I think the NY hospital that both our kids have been at can recommend someone for your son. My daughter had her biofeedback in Chicago when she was attending college but I heard her NY surgeon say there are people in NY that do it. Hope it helps. [ more ]
suebear I had a terrific rectal PT who worked out of USC Norris Hospital in LA. She left work to give birth to triplets; I'm not sure if she has returned to work. You might try contacting USC's colorectal department and see if they have one on staff. Calling other CR departments at other hospitals might help too. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Biofeedback to control urges and spasms
P PDXDavid
beckysmom Hi. My daughter went to biofeedback for about 6 visits prior to coming home from college and finding out she did need surgery. The biofeedback did help somewhat with the pain she was having, but her's was a surgical issue that needed to be resolved. She brought the meditation from the biofeedback on her phone to the hospital and used it a few times while she was there. Her biofeedback wasn't just directed at her pouch, it was for the pain she had been having for months. Hope it helps you. [ more ]
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J-Pouch ForumsPouchitis
Imodium Multi-Symptom Relief
clz81clz81
PDXDavid I used to enjoy a beer now and then, but have not since taking flagyl. About a year and a half or so. Luckily, it is neither here nor there for me if I drink alcohol so it isn't an issue. For those who enjoy wine or a cocktail, I can see how it would be a bummer. "Don't have any fun or enjoy life while taking this medication." [ more ]
Jan Dollar Your pharmacist is probably a better guide for drug/food interactions than your doctor, since they have it all cross referenced on their computers. Doctors really don't keep track of it all. I checked my Flagyl container and it even recommends taking with meals if it causes upset (antibiotics that interact are prescribed to be taken on an empty stomach and to avoid dairy and antacids). I think the pharmacy tech just went overboard with the stickers! Even the big alcohol interaction warnings... [ more ]
PDXDavid Hmmmm.... just did a google search of flagyl and antibiotics, and didn't see an obvious warning against combining them. I wonder if the pharmacy put the warning label on by mistake. There are six of them, warning against everything from exposure to gravity to breathing oxygen. LOL. And, when my Dr. confirmed the interaction, it was in the context of him asking me if I was taking antacids, and me responding, "No, because of the antibiotics I take" to which he responded, "That is correct." So,... [ more ]
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J-Pouch ForumsGeneral Discussion
pouch re created
S Sandyj
Jan Dollar Pouch reconstruction is a rare procedure. Very few surgeons are experienced with it, so it is smart of your surgeon to refer you to the experts. Jan [ more ]
dgtracy I Echo Mike on this one..word for word. [ more ]
Mike H This is a life choice only you can answer. If a surgeon has to refer you somewhere else to fix his J pouch maybe he should not be doing them in the first place. [ more ]
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J-Pouch ForumsGeneral Discussion
can anyone help with food ideas?
J jgering
PDXDavid There are only a few foods that I know with 100% certainty will give me problems. Eggs are one. Chili peppers are another. But some of the foods that we are "warned" about - like broccoli, bell peppers, onions, etc., I find are OK in moderation IF..... IF.... IF... there is also some bulk of "neutral" food in the meal, like mashed potatoes or pasta. The key for me is to dilute the desired offensive food as much as possible with bland food. That - for me anyway - seems to lessen the negative ... [ more ]
CeeeeCeeee Guess I'm lucky. I can eat/drink anything without repercussions. Have you tried introducing just one of the culprit foods in small amounts and trying it over a week? If no problems, add another culprit food. If a problem, hold off on the particular food giving you a problem. Try it again in a few months. I found that foods which didn't work for me early on became okay later. I know this sounds like work but it can yield very positive results. Best wishes! [ more ]
Minn Mark I appreciate your struggles. You need to be patient. My surgeries were in 2006-7 and there are some foods I have been able to slowly work back into my diet, while others are still no-no's. I agree: everyone's system seems to be different, so when a poster poses an issue like yours there will likely be lots of different answers. For me, it seems I do better and more consistently to always use Bean-o for gas, to eat lots of Activia yogurt, and for fibrous foods I tend toward always cooked... [ more ]
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J-Pouch ForumsGeneral Discussion
Stop Borrowing Trouble
MH Mike H
Spooky I don't think anyone here at all has ever pretended that this site is a substitute for actual medical advice. It's a support group. I come here to vent or bounce ideas off. There have been long stretches where I've been well and haven't been here basically at all, but I do like coming here because sometimes it's hard for people in our everyday lives to relate to what we're going through. At least people here sort of get it. That being said, you offer some very good advice in the sense that... [ more ]
dgtracy Trust But verify - Russian proverb I'm guilty of this as well. Though if i had not joined this site i would not have met some of these people that give you the motivation to get through some of these things. I know exactly how you feel and mean OP. [ more ]
Lesandiego This site has helped validate my concerns that what I might be experiencing is/is not normal. IMO it is always nice to be "validated". [ more ]
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J-Pouch ForumsGeneral Discussion
Straining
A Allison
dgtracy Same thing happens to me, Right when i sit down i end up straining a bit, once things start moving its like it found the door and the rest follows, after that once the "door" closes i have to strain a bit again to get the rest out, gas and all though thats usually harder to do. alot of times leaning to my left or your right i find helps as well, almost always to the point where one of the two cheeks is off the cushion. [ more ]
lovedby2 I had my takedown since October of 2012 and I too have to strain... Although I hear it is not good on the pouch to strain... But it seems to just happen, like my body wants to bare down. I strain but try to limit the pushing, if that makes sense... I know when to back off. [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation vs Diarrhea.....how to find the balance? Help please
XenophonXenophon
Jan Dollar Unfortunately, these early months are very trying on your patience (and your butt!). Things are in flux and as soon as you think you've got it figured out, things change. So, you have to be willing to change with your adapting body. For me, I would rather have loose, easy to empty stools. I don't have trouble with urgency or continence, so it works for me. I take Imodium to slow things down, but no added fiber to thicken things up. Over time, I've gradually reduced my Imodium need. At first... [ more ]
dgtracy is the bleeding from wiping so much and it becoming raw? if your bleeding internally and D maybe pouchitis? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula opening is now draining pus!
kmbr108kmbr108
kmbr108 Thanks for the response Rachel. I have had a seton drain put in before. I didn't care for it much either, but I have a feeling that's what's going to happen. At this point I just want the pain and worry to go away, so I'd take a seton drain and like it! [ more ]
rachelraven If it still hurts, you might need a seton in your fistula tract, to let it calm down. I'm not in love with my seton, but have to admit it's presence has made life better, and stopped that painful cyclical filling and bursting by allowing it the ability to drain continually. I just wear a 2X2 pad tucked next to it, and change it when I use the bathroom or after showers, etc. It drains small amounts of mucus, mostly, sometimes a bit if blood after a BM. [ more ]
kmbr108 Thanks Jan, I have been soaking twice a day, but maybe I should up it to four. Still waiting to hear back from the doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
Which side is your fistula on?
P PDXDavid
n/a Right side, "pouch-vaginal-fistula" (really, "pouch-perineal"); 1 seton. [ more ]
rachelraven Mine is on the right, an "intrasphincteric fistula at 7:00." I only have one seton/fistula. It does not involve my pouch. Was *possibly* due to pouchitis, narrowing of my outlet, an irritation, and straining that I got my abscess then fistula, but that's theoretical. No signs of Crohn's in any other way, so surgeon is reluctant to go there (because you CAN get a fistula without Crohn's... Apparently my paternal grandfather had one, but never had IBD). I keep the Crohn's thing in the back of... [ more ]
Uc-Danielle Left side and mushroom drain and 2 setons. Still having issues today pain and such [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic Floor Dysfunction
L LisaT
boy's mom Ms.M: Have you started bio feedback? Is it working? It may be advised for my son. Thanks [ more ]
Ms.M Cc Rocks! So glad to hear of your success. I have been having problems since m first surgery. Ive had my last 2 out of 6 up at CC and am under the care of the great and wonderful Shen, who has been amazing. They just figured out that I have pelvic floor dysfunction. How did your biofeedback therapy go? I have a prolapse that they won't attempt to fix until I do 10 sessions of biofeedback. The only thing is I live in Nashville. Not quite sure if they can do the sessions back to back or if it... [ more ]
kk I was told I had pelvic dysfunction and cuffitis. Given Canasa. Said he thought both would help. I was having problems emptying. Two ulcers in the anal canal. Therapst had me do exercises. At the end he evaluated my progress and pelvic was back to normal but didn't help problem emptying. Told doctor therapst thinks it had to do with dysfunction of pouch but doctor said I didn't need to be revaluated. I am not positive but I think my problem is a hemroid. I have problems when stool is certain... [ more ]
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J-Pouch ForumsGeneral Discussion
Ulcer in my cuff
CristolCristol
jeane I have had similar biopsy results as you even when on the rectal meds. After almost 2 years on meds, I still showed active inflammation in my cuff and a small ulcer on the anastomsis. My GI says I will most likely always show some level of inflammation in the cuff even if asymptomatic. I found using all those rectal meds more troublesome and often they irritated things worse and canasa burns. Somehow, I can manage to stay off all rectal meds when using cipro. I guess we have to pick our... [ more ]
TE Marie Just wondering as my last cuff biopsies came back saying moderate active chronic colitis. This was even with me using Canasa daily before the pouch scope and biopsies. That's why he added Anucort into the treatment plan. (Other times they are worse and talked about ulcers and friability.) Now I understand why the Canasa wasn't helping I talked about my unhappiness with how things are after 2.5 yrs since take down and Dr. Loftus said he could set up a surgical consult. I'd like to know about... [ more ]
jeane Good question TE MARIE. I think CC checked for infection and found none. My cuff biopsies always show active inflammation. I have no rhyme or reason why cipro helps. Never used it one day of my 25 years with UC and never had anal issues like I do now since having the jpouch surgery. I will never figure it out. [ more ]
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J-Pouch ForumsGeneral Discussion
How common: UC after j-pouch becomes crohns
M mickn
Dot2 19 years ago daughter was diagnosed with Crohns by a local Doctor - she went to well known hospital and she was diagnosed with UC - 2nd worse case they had seen - she ended up getting a ileostomy and then J-pouch - I have never heard Chrones mentioned again - they recently found cancer in a j-pouch fistula [ more ]
Nroley I got sick when I was 18, I kept being tested and my results always came back inconclusive, I was told b/c of the severity of my disease they suspected crohns. After a couple years a new test came out (I have no idea what it was other then it was blood work) and much to the surprise it came back ulcerative colitis. I had my jpouch surgery 9.5 years ago. In April I had a cat scan showing inflammation in my small intestine, I'm on a 2week course of flagyl and iron (i'm severely anemic ) and... [ more ]
Pluot The number that I've usually seen thrown around is that 10% of UC cases end up re-diagnosed as Crohn's at some point after surgery. freedom75, have you had the j-pouch construction already, or just a colectomy? [ more ]
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J-Pouch ForumsGeneral Discussion
Urgency/cramps/spasms
B BarryY
BarryY Thank you Jan. I am seeing my gastroenterologist soon and will discuss those possibilities with him. [ more ]
kronikDiarrhea If you eat too much fiber it can cause a partial obstruction which leads to trapped gas and stool in the pouch. This trapped gas causes very painful spasms in the rectum and causes urgency yet the inability to go to pass stool/gas. It takes a few days to clear up. Take gas x and keep walking. You also need to lay down somewhere with your legs up ( knees close to your chest) because that is the only way to pass gas when you have partial obstruction. [ more ]
Jan Dollar Sounds like a pelvic floor dysfunction (levatator ani), but that is usually associated with the early post op phase. I wonder if you have a fissure starting and you are getting early sphincter spasms from it. Another possibility is maybe a prostate problem, like prostatitis? Just a thought and a long shot at that... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Choosing a toilet
Scott FScott F
Jan Dollar According to Consumer Reports, the double-flush models are not recommended, because they don't really save water. I was going to go with the Toto, but it seemed that the local hardware stores did not stock them and I did not want to special order one. Plus, the top rated American Standard was only $209 at Lowes. It seems that the technology has improved a lot since we last remodeled in the early 1990s. Jan [ more ]
nocolon-2000 I wish I could remember where I recently used a toilet that had two buttons in the lid: Left button for # 1; right button for # 2. I of course, pushed both separately....had to see what it was, ya know. [ more ]
Scott F I'm starting to think about the Toto "double cyclone" system, and the Washlet model that mists the bowl in advance. OTOH I could enjoy a nice vacation for the cost of that pair... I'm imagining the late "Movie Trailer Voice Guy" intoning "in a world where you don't have to manually wipe the toilet every day..." [ more ]
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J-Pouch ForumsGeneral Discussion
Best J-Pouch Surgeons in Los Angeles?
D DanielRivera
Scott F My surgery was done by Robert Beart, now at Glendale. He also did my nephew's J-pouch. I'd recommend him in a heartbeat, but I'm told he no longer operates. I'm pretty sure he wouldn't tolerate a mediocre associate, so on that basis alone I'd consider Dr. Garza. [ more ]
suebear Other good LA surgeons are Dr. Sak at UCLA and Dr. Ana Garza at Glendale Memorial. I believe that both of them take insurance. Sue [ more ]
DanielRivera I need a surgeon who actually takes insurance. No way I can pay this all out of pocket. Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
Still here w/fistula and worried about this cc and Remzi talk
Uc-DanielleUc-Danielle
Uc-Danielle Your being referred to a pain dr? I like dr leisman bc he was very nice and personable and understood what was happening. I have to go back each month though to get my scripts filled. And Friday I will see his nurse practitioner for the first time and not him. But that's bc we are 4 months in. [ more ]
liz11 ladies.. please tell me who to see. Dr. Shen is referring me.. so I can avoid another surgery. Do you each like who you both saw. And if so why? [ more ]
Uc-Danielle No it's dr. Leisman [ more ]
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J-Pouch ForumsGeneral Discussion
Difficulty fully voiding pouch & pouch prolapse
smstarcrystalsmstarcrystal
boy's mom Did anyone have success with bio feedback to help pouch prolapse? [ more ]
Kelsie My daughter has also been dx with pouch prolapse. Have you been tested for pelvic floor dysfunction? Apparently she has that too. Not sure which came first... She is going to try biofeedback to see if that helps hers before doing the surgery. The gi only gave it 15% chance of helping but we figure it is worth a shot. Good luck! [ more ]
LionsPride Have you tried a squat toilet or position? I find this helps when I'm having issues with emptying. This is an actual product designed for this, but I actually just use the bottom step of a little household 2-step stepladder and it works fine. Just something to bring your knees up. http://www.squattypotty.com/ [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch surgery in 10 days, advice please
A Anthonyv
TE Marie It's good you are doing so well! If your tummy's gurgling and stoma's flowing you are good to go I'd say. Just go easy and don't go overboard on any one thing. When you say jelly is that like jello in the U.S.? That is pretty good to eat at this stage. The more you walk the quicker you get out of the hospital and are able to sleep with out them waking you up to take your vitals! Make sure you know how to change your bag and hopefully you will have visiting nurses to help you for a week or... [ more ]
Angeltears Hi anthony its sharleen how you doing mate? If you have output from your stoma then it is awake i wouls slowly start With water etc I gave the apple juice a miss due to the acid burn on the stoma Take it easy and dont try to rush things Message me on facebook if you need to talk x [ more ]
Anthonyv Thanks for the replies Guys. I had the surgery on Friday at about lunch time and it is 7pm Tuesday now Overall I'm going okay. On the second day they tried getting me out of bed which was just excruciating. But I managed it today and walked for about 30m which I am pretty happy about. I havnt been drinking much but have been chewing on some crushed up ice. My stoma has been emptied twice and the contents was really watery browny red with a pretty strong smell. I've felt my tummy grumble a... [ more ]
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J-Pouch ForumsGeneral Discussion
Dropping in to say hello :)
DM Dave M
dgtracy Great motivation for sure!! [ more ]
DON alias (Butt Blaster) Dave I have had a J Pouch for 8 years and I to have had success. I also has a ruff 2 years but now at 59 I joined a baseball team and still run 3 miles a week. I have always said to newbees wait till about 2 years and ask yourself would you do it again and most will say yes. Hang in there it gets better we all have gone thogh ruff times but it wil get better! [ more ]
runner4449 So great to read! I'm a distance runner, and recently completed a half marathon just 7.5 months post take down, and am training for a full month that I'll run just shy of my one year anniversary of the take down surgery. You are correct...your life can and will go back to "normal" (relatively) in time. Mine seems to have gotten there a little earlier than the average, and I am quite grateful for this each and every day. Congratulations to you and hope you have continued success. [ more ]
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J-Pouch ForumsGeneral Discussion
To ELH and Elmerfud
L LisaT
ELH It was "bad", meaning surgery under full anesthesia and being opened up 6". Dr. told me that he spent 1 1/2 hours just cleaning up the adhesions only. I also had other issues. He told me that you cant have it done lapro because the adhesions are on top of each other and he needs to see them all simultaneously. Then of course there is the painful healing time like after your first surgery. But, like I said, to me it was worth it. I had my last surgery 2007 and haven't had a need for more... [ more ]
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J-Pouch ForumsGeneral Discussion
Sinus Question
JF Joe Fav
Joe Fav Thanks for the feedback. I'd like to think it will pass. But it's been worsening for 8 years. I have been out of the J-pouch community and haven't researched much in the way of IBD since my surgery. I was mentally trying to put it past me. But IBD is like a pad penny that won't go away. It seems to pop up in one way or another. I just pray my kids never inherit my genetics. I am almost hoping its thyroid related and curable. But I am sure it isn't. Which means nasal polyp surgery every three... [ more ]
Jan Dollar Connie's son, Thomas, has been plagued with sinus problems pretty much since his surgery. It is definitely IBD related, but not specifically j-pouch related. There is not a whole lot of literature on this, but it is out there. There is more about other IBD related respiratory problems, like bronchiectasis. http://www.ncbi.nlm.nih.gov/pubmed/12751702 If Flonase works, stick with it. It is a local/topical treatment, so the risk is extremely tiny. My husband has been on it for years and it is... [ more ]
Scott F Flonase (or Rhinocort) are nothing like oral steroids, in my experience. The systemic dose is much, much lower, and I believe insufficient to cause adrenal suppression. The side effect profile is nothing like oral steroids in terms of frequency or severity. If nasal steroids control your significant problem, you'd be much better off using them, IMO. I find it hard to make a direct connection between this condition and the J-pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Tired after eating
W winnie
Lesandiego No, I am hardly ever tired. Since I started my part time job, I go to bed around 10:30pm and I am up anytime between 4:30-5:00am. I have never been a person that could start to waken and then go back to sleep. [ more ]
CeeeeCeeee Yes! I have to watch how much I eat at a meal if I have work to do after. Otherwise, I do take a nap! I don't have a choice.....I feel almost drunk! [ more ]
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J-Pouch ForumsGeneral Discussion
2-pound J-Pouch Reservoir
LesandiegoLesandiego
Lesandiego Yes, I pee, but you know what is strange....90% of the time, I cannot pee until I empty my pouch first. I have always had an excellent bladder. Used to be able to "hold it" for 12 hours a day. I hardly ever have to pee. Now, the only urgency I have is to empty my pouch. I do drink about 4-6 8oz glasses of water a day, plus 3 cups of coffee and 2 glasses of wine. I used to never sweat either (from forehead or underarms). Now, good Lordy..... I rain buckets of sweat from my head if I am out in... [ more ]
Pluot I don't understand how this follows that you can't absorb anything? You're clearly absorbing nutrients and liquids because a) you weigh 122.4 lb, which is low but not clinically underweight, and b) you're peeing (I assume). [ more ]
PDXDavid Hmmmmm.... my weight difference should be 1/4 of an ounce. I'd give my right arm to be able to hold 2 pounds of fecal matter in my pouch. The instant any amount - even a drop - hits my pouch, I have level 10 pain, spasms, and cramps that literally drop me to the floor. Quite embarrassing when you are walking through a grocery store and people come rushing up in a panic because you collapsed and are writhing and screaming like someone is cutting your guts out with a dull knife. [ more ]
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J-Pouch ForumsGeneral Discussion
Software to track food & symptoms
M mickn
Jilly There are two that I easily found on the App Store: GI Monitor and MyGiTrack. One of my Team Challenge buddies is really active on GI Monitor. Check them out!!! Jilly [ more ]
PDXDavid I tried one such app for the ipad, and it was not useful. I think the designer wrote it based on HIS particular issues. Don't remember the name of it. I deleted it after a few days. My suggestion would be to add a graphing element so you can see the results in pain of eating a certain food or taking a certain med. If every time you eat broccoli, it is followed by painful gas 3 hours later, you might not detect the connection but with a graph that combines pain, frequency, food, meds,... [ more ]
dgtracy Idk how tech savy you are but maybe u could create a way for the app to be able to recognize and red flag when u have the same symptoms that also had the same food logged. [ more ]
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J-Pouch ForumsGeneral Discussion
Can`t quit going to the bathroom
J Jojoe
PDXDavid I will try pain management. Realistically, it seems the last effort before euthanasia becomes the only remaining option. Hopefully it works as well as some of you say it does. Crossing my fingers. [ more ]
rachelraven Pain management can (and should) be more than handing you a script for an opioid. There are many adjunctive therapies that work or help chronic pain. Hubby truly had psoriatic arthritis, managed poorly because of *course* he couldn't have pain, as he was "too young, too healthy, didn't have all the markers," etc., so the nonsurgical pain clinic treated him with lumbar injections when the medical world was failing him... So they at least helped him until he found an autoimmune specialist who... [ more ]
Jojoe I am going to one today...I will tell you first hand when I get back [ more ]
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J-Pouch ForumsGeneral Discussion
Question for Jan Dollar
Kline84Kline84
Jan Dollar Frances, Hopefully you are discussing the weight thing in your therapy sessions. Since I know nothing about you personally, I may be all wet in my thinking. But, for me, I needed to be OK with an imperfect outcome (I am not going to be a fashion model or wear a bikini). I do not hang my happiness on my weight, and I know I will always be a little chubby (more to love?). Perhaps if you joined something like Weight Watchers you could get the motivation you need. Once you lose 10 pounds, you'll... [ more ]
Frances I cant thank you enough for just saying you know how difficult this must be. It has been the hardest year of my life. I am not looking for a magic pill just want to be healthy and loose the weight. I am thankful that i have a medicine that keeps everything under 90% under control. I have a wonderful family that has been great. I thank god for them. I just feel like a salmon swimming up stream with every step foward i go two back. I will not give up i cant but i just want my hard work to pay... [ more ]
Jan Dollar Sure, sometimes unintended weight gain is a side effect of some medications, but it is too easy to try to pin it on that. So, I think you are smart to look at others factors. Depression alone can lead to weight gain and there are multiple factors. It leads to emotional eating, which often is empty, snack food calories. Plus, not working drastically reduces your activity levels. And pile onto that, the fact that the stress and anxiety associated with finances, employment, your health, your... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding
S sunshine06
skn69 Sunshine, Walking, running, bouncing on a trampoline or just about and sustained physical activity that repeatedly shakes or puts pressure on your insides can cause problems like that...granted not all of us have them but not all of us run post pouch surgery either....I used to do the 4 May walk-a-thons where I come from (1 for a different charity each weekend in May)and by the end of each one I had bloody stools, cramping, diarrhea etc...I was told by my doctor that sustained physical... [ more ]
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J-Pouch ForumsGeneral Discussion
1 year after surgery
O Onwisconsin
runner4449 Fantastic! I remember you being helpful and supportive when I first found this forum right before my take-down surgery (and I was an anxious mess), so it's great to hear a good update from you. Take care! [ more ]
kta What a wonderful post. Congrats on your one year anniversary and your good health. I think everyone needs to read these types of stories to know just how life changing this surgery can be. I am 9 years out and, except for moments during that challenging first year, have never regretted the surgery. Like you, it gave me my life back. I had gone downhill slowly so did not realize just how much my UC was controlling what I did or just how generally yucky I felt. Toward the end, all hell broke... [ more ]
ljk What a relief to read that this is all worth it.I am waiting for my takedown surgery in about 1 month. I sometimes fear of the unknown so again, I enjoy hearing your story! I pray like you that I do not have any accidents and and dont have to take immodium anymore. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Prepping for Step 1 of 3
P Pkitty
kta Directly after one of my surgeries, I can't remember if it was the end or the loop, I had not had any output and was getting a bit worried. I woke up in the middle of the night and the bag was so full of gas that I knew if I tried to get up, it would explode. I was scared to move. I rang for the nurse and thankfully she arrived quickly. She carefully emptied it and all was well. The only other time I had an issue was when I got careless about emptying gas. The bag was about 1/3 full, but had... [ more ]
Pluot Hi! First of all, good luck. I am doing three step and I will echo what everyone else has said -- quality of life after step 1 is AWESOME. answers to qs.. (1) Once in the morning, two or three times in the afternoon/evening. If I ate breakfast at home and emptied before leaving for work, I would go through the entire workday, including eating lunch, without emptying. For the first month or so I always woke up in the middle of the night to empty, but by the end (I had it for about four... [ more ]
Uc-Danielle Yes! I recommend it. I'm 24 and I coached softball for my college and it made me less self conscious and I could raise up ans catch high throw without worrying about my bag showing! It cost like 90 something I think [ more ]
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J-Pouch ForumsGeneral Discussion
Do any of you drink Beer?
XenophonXenophon
Former Member ❤️
Cristol Beer was my drink of choice, but it does cause serious butt burn for me. I am not sure if it is gluten (as I find gluten does affect me somewhat). Mixed drinks with little sugar doesn't bother me at all (cranberry (1/2 cal)/vodka)). Wine causes major butt burn for me and if I have a drink with a lot of sugar----then I have severe itching. Hope this helps! I will say that if I do drink a few, I can sleep through the night---I suppose because I am so dehydrated. [ more ]
bratcat I'm not a beer drinker, but I do like my wine or mixed drinks. I find I do get a bit more butt burn the next day. I just kind of deal with it. I usually only have two drinks and it's in moderation (once every other week at most). My tummy does sometimes go out of whack but I can never tell if it is from drinking, what I ate, or the time of the month (I really need to keep a log or something...). [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Chron's of the Pouch
F Future_Jpouch_Patient
n/a Future_Jpouch_Patient: I don't know whether biologics are in my future or not. None of my drs. have ever really encouraged me to get on them, as the cuffitis is now being controlled well enough with the Canasa for the time being. My fistula is probably a result of the constant, severe inflammation in the ATZ/cuff - caused by the disease. The fistula can cause problems if it "backs up" and creates an abscess (super-ouch), or start branching off, creating more fistulas. With a seton, these... [ more ]
boy's mom my son had the take down in April. In July he had a video capsule showing crohns in his small intestine.Last year he had the capsule and the small bowle was completly normal. Since takedown he has had pouchitis, cuffitis and more and more nausea making it hard to eat. He is 6 weeks on TPN thru a PICC line. He will probably start biologics next week. [ more ]
Future_Jpouch_Patient Thanks guys. n/a - if the cuffitis is kept at bay with the suppositories, will you still need biologics? What kind of problems does the fistula cause? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
One thing
P PHedges
Caty This is not the most important thing but I thought I would add it anyway. I panicked the first time it happened to me. If you drink something red in the hospital or at home, you will see red in the bowl. IT'S NOT BLOOD! Caty [ more ]
PHedges Thanks Jan, Scott, Marianne, and Lesandiego for your advice,I thanked the others earlier. yes I have a positive attitude, much faith, a wonderful surgeon, and a very supportive Mom and Sister. I realize there is a "process" associated with the J-Pouch including risk, rewards, set backs, bad days and good ones too. Thanks to all for giving me your advice and support! [ more ]
Lesandiego I too had emergency surgery with multiple complications. The 2nd step (1st of 2 for J-Pouch) when exactly as planned with no complications. Your stoma will be different and a little difficult to maintain. The 3rd step did not go as well and instead of 3 nights in the hospital, I spent 7 nights. I was running a fever and throwing up a lot the first few days. Nobody told me why, but with hindsight, I suspect it could have been pouchitis, due to my eating solids a little too soon. Stick to the... [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro and flagyl help cuffitis??
dgtracydgtracy
dgtracy Thank you, the doc knows i put myself back on it, I will know more of whats going on this coming Thursday, first scope. [ more ]
Pluot Cipro and flagyl were the only drugs that helped my steroid refractory UC so I can see them working for cuffitis too. You need to be taking these meds under the direction and supervision of a doctor, if not identifying a more benign treatment protocol. I ultimately opted for surgery because flagyl was the only thing keeping me out of the hospital but it started to cause optic nerve neuropathy, a complication that can lead to vision loss. Neuropathy in the extremities is also pretty common... [ more ]
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J-Pouch ForumsGeneral Discussion
S, J and W pouches
P Pkitty
Trojan Thanks for your reply Jan. What you say makes a lot of sense to me as the issue came after i had an abscess which significantly constricted my emptying, decreased my frequency and hence stretched my pouch. i can live with it for now, while i lookout for pouch shrinking techniques! [ more ]
Jan Dollar For the life of me, I could not find specific medical literature that pointed to that, but I know I read it somewhere, some time. Anyway, people with j-pouches periodically suffer from mechanical problems due to a too large pouch. Typically, it is related to anal stricture, leading to pouch outlet obstruction. This in turn leads to chronic pouch distension and incomplete emptying issues. So, I guess it would make sense that a pouch that starts out larger might be more likely to develop this... [ more ]
Trojan W-pouches are OK fr the most part, but have an increased risk of an overstetched pouch hat is difficult to empty. Hello Jan, I have an 18 year old W pouch, which, in the last few years, has become difficult to empty. My doctor has limited knowledge/experience of this issue. I would be VERY interested if you could point me towards any further info on this topic. Thanks, John [ more ]
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J-Pouch ForumsGeneral Discussion
Two Years in August, First Post on Forum, What's Working...
James BJames B
Brian E. Hey James, I am a year younger and can somewhat relate to your experience. Quite the ride you've been on brother. All the best to you and just so you know my wife and I enjoyed Portland tremendously while visiting. Take care! Brian [ more ]
James B Ah yes, perfusion. I just looked it up. Nice to have the right words for describing everything. Amazing how much new vocabulary and terminology we end up learning on this journey. Who would have thought that I'd have this wealth of medical experience at 39 years old? =) James [ more ]
Scott F Welcome, James, and congratulations on that miracle foot! I think the phenomenon you're describing is "perfusion." It's a good thing - just healthy blood flow to the body part. The pain was from perfusing a foot that was half dead. I'm very glad you got through it. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Anyone tried juicing??
M Mason&Mara'smom
Former Member ❤️
Anushka I met with a nutritionist this week who confirmed juicing is a great way for new pouchers like me to get veggies without the fiber. But he wisely advised to only drink very small amounts at a time, like 1-2 oz or whatever yield you get from a typical meal's serving of veggies. For example, if a typical side of carrots with dinner equals 2 whole carrots, the only drink the juice produced from 2 carrots. I have a really excellent Omega Vert masticating juicer. It took me months to get over... [ more ]
NJK Try not to use too many fruits because they are so high in sugar. I juice a few times a week. I stay heavy on the green size. but it does make me more active so I use banana, applesauce and lomotil to slow things down. Stay well hydrated. I find that it cuts the but burn too esp if I stick with greens. [ more ]
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J-Pouch ForumsGeneral Discussion
Questions I am confused on.....
dgtracydgtracy
PHedges I don't eat any fiber since it does not do well for me, I stay pretty much with the protein diet and low residue such rice, potatoes, carrots, green beans, bread... Etc. most of the time I have no issues with consistency. My output isn't liquid unless I eat fiber. Again, try different things and keep track of what works, I think we all do a lot of trial and error. [ more ]
mgmt10 I think for like two weeks after take down I lived on toast, scrambled eggs and yogurt. Then after that I just ate whatever I was preparing for my family and it was life as usual. I never stayed away from fiber...I love fruits and veggies too much. Everyone is different but you will never know unless you try. Start out with small amounts and build from there. The only time I took Imodium is when I had my loop ileo. I didn't take it after takedown because I wanted my body to adjust on its... [ more ]
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J-Pouch ForumsGeneral Discussion
Chrons Colitis/ Indeterminite Colitis
F Future_Jpouch_Patient
Future_Jpouch_Patient thanks Scott - good to hear things turned out well for you! [ more ]
Scott F I've had great results in the eleven years since my pouch was constructed. Two surgeons turned me down, convinced that I had Crohn's. The evidence was conflicted, though, and the pathologists couldn't make a definitive diagnosis even when they had the whole colon to look at. I do have antibiotic-dependent pouchitis (not a rare circumstance), but I do great as long as I stay on Cipro. When I made the decision to have the surgery, I new it might not work and it might not last, but I wanted to... [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Cleveland Clinic High Risk OB
A andrea951
JillM The waiting is the worst. Try to find some things to do to pass the time. Fingers crossed for some good numbers and then you will have a little time before the next wait - the ultrasound...the whole process is lots of waiting. End result is worth it though! [ more ]
andrea951 Thanks Jill! I can still hardly believe it! I'm a bit concerned today though because I have some brown spotting. I know it can be normal, but it still worries me. Next week's beta can't come soon enough. [ more ]
JillM No dr recommendations, but lots of congrats! You must be so excited! I had two IVF pregnancies and my babies are now 5 and 7 1/2! [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
J pouch, pouchitis?
C Chris_JPouch
Scott F The experiences here suggest that your best shot at avoiding antibiotic-dependent pouchitis (or managing it without meds) are aggressive probiotic use (I take 4 VSL #3 DS packets/day), and a very low carb diet. That being said, long-term antibiotic use also seems to work fine for most folks, once they find out which one(s) don't cause any side-effects. [ more ]
See 1 reply...

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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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