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J-Pouch ForumsGeneral Discussion
chronic bleeding (some drops): feeling so anxious
I Ikh
Jan Dollar A few questions. Are you sure you do not have both cuffitis AND pouchitis. Bleeding at the end of a BM would be consistent with cuffitis and antibiotics don't work for that too well (mesalamine or hydrocortisone suppositories are usually prescribed). Also, why aren't you taking Flayl or Cipro, the usual pouchitis antibiotics. With the amount of bleeding you describe, I would worry about a C. diff infection. Have you been tested? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Recto vaginal fistula
M mel82
Madi78 The second one was a traditional repair near the first one and I had them both done at Mayo. [ more ]
CJB I also have an RV fistula, for about 8 years now. My pouch is 19 years old. I think I am one of the very few that has no seton, and has never attempted a repair. Since my pouch is otherwise (usually) extremely well behaved, I put up with the inconvenience (and what-not) regarding the fistula. C-jay [ more ]
n/a I've had one for over 4 years, with a seton in for 3 years now. As Gin noted, a search will turn up quite a bit of info - I myself probably posted more over the years than necessary! Madi78, what was the second procedure that worked for you, and where did you have it done, if I may ask? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need a new doctor pronto
RS Rebel Sue
Jeffsmom Sue, I think PA is a good idea. There is no way in hell you could get me over the Bat Bridge! I can't even get over the Delaware Memorial! If for some reason you can't find what you need or need a second opinion. New Brunswick is only an hour from Phila. Also the guy at Fox Chase I mentioned is excellent. He was our second choice from our son. Good luck! Glad you are feeling a little bit better. dianne [ more ]
Rebel Sue Thanks so much to both of you for your replies. I will be looking into the Penn doctors because that's a reasonable driving distance from me. I considered Johns Hopkins but it involves going over the Bay Bridge...while I'm sure I could do it while feeling well, not so sure about when I'm sick. Yikes. That is one scary bridge. Anyway, I went to the ER this morning because I was so tired of not having any relief or clear diagnosis of what was going on despite an MRI and a CT scan. The ER... [ more ]
Bears You mentioned located in Delaware, and Penn would be an option for you. Here are a few links to surgeons and GI docs at Penn that may be able to help. Hope you are doing better, and that you can get the medical help you need... http://www.pennmedicine.org/pr...profile/faten-aberra http://www.pennmedicine.org/pr...ofile/najjia-mahmoud http://www.pennmedicine.org/pr...rofile/joshua-bleier http://www.pennmedicine.org/pr...ofile/jeffrey-drebin... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Left side stomach pain
S stpaulmom
Jan Dollar The fact that it is not constant is a good sign. Could be a partial obstruction working itself through, or something as simple as indigestion and gas. If it is not severe and you do not have other symptoms, such as fever or shortness of breath, you can wait and see how it goes. Even if it is a partial obstruction, you can wait and see if it resolves on its own or gets worse. I've had them take a week to resolve. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Almost four years later
Mountain ManMountain Man
aka KNKLHEAD Thank you, Mountain Man. Best wishes for continued good and better health! [ more ]
Mysticobra I have a similar story. All my complications were condensed. I am a year and a half out and believe deep down it will take a couple more years to feel somewhat normal. But that's OK. I see or feel improvement.... Ever so small it may be... Every week. I am getting stronger and a better attitude towards the whole thing. I think positive now... I know it will get better and time is my best allie. Thank you for your story. It sorta confirms my thinking. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Can we make pouch stronger for procedure??
PouchomarxPouchomarx
skn69 Long walks, deep breathing, well balanced diet...the usual stuff but to be honest, needing surgery is such a big stressor that there is not much that you can do about. A little bit of sunshine and Vit D wouldn't hurt you though. Sharon [ more ]
Pouchomarx I dont smoke, never have, but i do have alot of stress... [ more ]
skn69 One of the top 'don'ts' that my surgeons has given me is to quit smoking at least 1 month pre-op...something to do with vascularisation and healing. The only thing that I have ever found that sort of (but there is no medical confirmation in this) helped me pre/post op in the healing process is taking organic silicium...you can look it up on the internet...some French researchers from a huge Govt reasearch lab discovered the virtues of it and have commericalized it. I tried it back in 2007... [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic pouchitis using only Flagyl
LaurieK714LaurieK714
Jan Dollar Sounds like it is time to stop the Flagyl and try Cipro. Might be a good idea to rotate with rifaximen, and maybe Septra, Augmentin, tetracycline or other antibiotics. But, you definitely need to stop the Flagyl. It is a great drug, until it isn't... I have NAFLD (non alcoholic fatty liver disease) and my liver enzymes have been great too, since losing some weight and getting off NSAIDs for my enterpathic arthritis. Jan [ more ]
LaurieK714 Thanks Jan. I have my liver/labs done every 3 months. My numbers have been perfect for so long that my hepatologist just moved my follow ups to once a year. I see my gastro every 6 months. He's great at doing phone consults as well. I was doing fine with the pouchitis until I stopped taking the Flagyl. I'd like to see about trying something else. I Just want to take a break and see if anything works better, or with less side effects. But I sure don't want to slide too far backwards. [ more ]
Jan Dollar On the other hand, if the hot flashes improved when you stopped the Flagyl, they may be related, even if they are menopausal. There can be many triggers during the perimenopausal period. I was extremely sensitive to alcohol during my perimenopausal period of about ten years. Flagyl can contribute too, as some people get a disulfram-like reaction with Flagyl, triggered by alcohol. Hot flashes can be part of that reaction. http://www.drugs.com/sfx/metro...le-side-effects.html I note that you... [ more ]
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J-Pouch ForumsGeneral Discussion
Facing the inevitable: going to a perm ileo
GinLynGinLyn
BillV Pouchomarx, the dysplasia I had was in the short section between the pouch and anal sphincter and can become cancerous. A malignant lesion was successfully removed 6 years earlier from the same area, but removal of that section could not be done without making me incontinent. I never had dysplasia in the pouch itself and the cuff was clean for 25 years following my original surgery. I hope that Dr. Shen is successful in closing your leak. Bill [ more ]
Pouchomarx Hey Bill, isnt dysplasia of the pouch very rare? Thats what I was told by my Cleveland Clinic docs. I had low grade all through my colon which was my reason for the jpouch. Its disconnected for over a year now due to a leak. Surgeon states as long as no issues the pouch can stay as is with my temp ileo. It just worries me a little that since i had it in the past i will get it in the disconnected pouch as well. Shen is going to attempt one last try to close the leak in the summer and i'm... [ more ]
BillV Gin, you certainly gave it your best, and I am so sorry that things did not work out for you. I cannot relate to what life with a permanent ileo is like because I opted for a BCIR when my j pouch had to go due to high grade dysplasia. This procedure or the closely related k pouch might be a good alternative if you have access to a good surgeon who does them, and no external bag is needed. Removal of a j pouch is a major operation, but my surgery went well and I was back to most of my normal... [ more ]
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J-Pouch ForumsGeneral Discussion
Longest time with loop ileostomy and jpouch??
PouchomarxPouchomarx
Pouchomarx I hate it because its a shitbag on my stomach. I know its keeping me alive for my daughters, but thats the only thing i like about it. [ more ]
sweetpeasmom My daughter has had her diverting loop ileostomy for 3 1/2 years. She has had one complication after another so she never had the surgery for her jpouch to be re-connected. Occasionally if her output is really liquidy and her bag gets really full she gets stool thru the lower loop and it comes out the anus. The surgeon never seemed concerned, tho it's been a long time since she mentioned it. She works really hard at loving her ostomy, as it has given her so much freedom to move on with life... [ more ]
Jeffsmom Pouchomax, my son had his ostomy reconnected in March. He has a micro leak in his pouch and developed an internal abscess and fistulia. The plan is to wait 6 months in the hope that the fistulia goes away and the micro tear closes up on its own. Good luck to you dianne [ more ]
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J-Pouch ForumsGeneral Discussion
adhesion surgery?
FL Fight like a girl
Fight like a girl thanks everyone! I wonder how much of a trouble my hernia will give the surgeon when she tries to remove the adhesions. I was advised by Dr. Shen to leave the hernia alone, sometimes he said they can be more of a trouble after operation, so I will take heed to his advise. I just wish I could also get relief from the pain, etc that my bottom keeps giving me. I use lidocaine 5%, and all the other stuff but it seems as soon as I have a bowel movement, ouch starts all over again. I don't think... [ more ]
jipalmer Hi Patti, I just had adhesion removal surgery on January 29th of this year. 12 weeks later I am finally starting to feel myself again. What everyone is saying is correct; this surgery can just lead to more adhesions...but sometimes it's the only option. My biggest piece of advice to you is to ask what you should/shouldn't be eating after surgery, before you're discharged from the hospital. I had no guidance and was lucky to find some really sweet people on here who jumped right in with... [ more ]
Fight like a girl thank you much. I have had sooooo many abdominal surgeries so I'm sure those nasty adhesions are like spider webs..into everything. yes, I am in good hands and I know I have to have faith that this will be the right thing to do. I just know that the last time (10 years ago) my ob/gyn and colon rectal surgeon in Pgh. hospital tried to do a hysterectomy on me it failed because of all the adhesions, they actually cut into my small bowel and almost ruined my pouch then, but then again, that was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Should exploritary surgery be done?
JeffsmomJeffsmom
GinLyn Just one small experience: I agreed to exploratory surgery for "random" abdominal pain which no drugs or treatment helped; it was debilitating. All tests for pretty much everything came back negative or inconclusive. They went in and removed my gall bladder, which looked "odd"; they couldn't find anything else other than some scar tissue which needed trimming. After the surgery they cut open the gall bladder only to discover that the blasted thing was completely dead inside, slowly spreading... [ more ]
CeeeeCeeee I was on the operating table "ready" for my takedown and having a very emotional time thinking about giving up my temporary ileostomy which I had for a full year and which I had learned to live with successfully. The unknown was too much for me and I burst into tears. My surgeon knew how I felt and said, "You can still change your mind." So......if changing one's mind is an option while on the operating table, giving them notice of almost a full day should be just fine. Best wishes! [ more ]
Jan Dollar They probably have him scheduled for the next day for logistical reasons. Reserve the spot now, and you can always reschedule if needed. Nearly impossible to schedule on a day's notice without it being extremely urgent. Believe me, if you reschedule, they will fill the slot with someone on a wait list, so don't feel like you are "locked in." The folks in the Cleveland Clinic are used to patients having to travel for treatment, so they consolidate as much as they can. Most people want to go... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery while on prednisone
SH shawne h
CeeeeCeeee I tried to taper down to 10mg of Pred prior to surgery but couldn't do so without feeling very, very sick.....ulcerative colitis symptoms intensified. So, I went into surgery while on 20mg. Pred. As a result the anesthesiologist hooked me up to IV Prednisone (or something similar) and I came out of surgery looking like Humpty Dumpty! This lasted weeks and weeks. Couldn't even put my shoes on my inflated excuses for feet! Slowly tapered off over the next few months or so and it must have... [ more ]
Scott F I was on plenty of prednisone when I had my J-pouch surgery, and had been for some time. They have to significantly increase the steroid dose around the surgery and immediate recovery, since the adrenals can't respond to the stress of surgery. My taper post-op was unremarkable, and very welcome. [ more ]
Jeffsmom Shawn, I've had lots of surgery while on Predisone. It was never a problem. They just add it to your IV solutions in the O.R. I've been on it for years because I'm a severe asthmatic. Just let anastesia know about and they will take really good care of you! dianne [ more ]
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J-Pouch ForumsGeneral Discussion
NO HEAVY LIFTING WITH J-POUCH????
PouchomarxPouchomarx
Former Member ❤️
Jan Dollar No, because it is not about your incision, but about the internal forces/pressure on the pouch structure itself. The pouch is constructed the same whether it is open or laparoscopic. The Pouchitis Clinic at Cleveland Clinic is the only place I've heard of issuing this restriction outside of the normal surgical recovery period. I believe it is because there have been a few rare cases of pouch rupture or prolapse that was related to what seemed to be minor lifting. However, I would suspect... [ more ]
Jack Passi Is there a difference between laparascopic surgery vs. open surgery as far as lifting weights? [ more ]
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J-Pouch ForumsGeneral Discussion
VSL #3
jipalmerjipalmer
Scott F I take 4 packets per day of the DS (double strength). Two before breakfast and two before dinner. [ more ]
jipalmer Ok, thanks for the info! Have you taken it? If so, how many packets a day did you do? The regular strength says anywhere from 2-8 packs a day. [ more ]
Scott F I only know of two ways to get the price down significantly. One is if your insurance company covers the DS (prescription only) strength - this varies from one insurance to the other. The other way is to go through through an assistance program (essentially financial aid) that requires income documentation. Lots of folks here use VSL #3. It seems to work best at preventing pouchitis, which can make it tricky to judge if it's working. [ more ]
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J-Pouch ForumsGeneral Discussion
Ointment I've found I'm really liking
rachelravenrachelraven
ccanepa456 I hate the thick messy ointments. I usually use A&D or aquaphor for my fissures and butt burn, but sometimes it just doesn't cut it! Thanks! I will have to try this ointment because I do love all of burts bees products that I have tried [ more ]
GinLyn Good tip; they've just started carrying Burt's Bees products over here, so I will keep my eyes out for it for sure. Love their lip balms and foot moisturiser! (LOL, note to self: do NOT mix up application of lip balms or cough lozenges with ointment! Oh, man. I am way too easily amused.) Can't get it over here, but I have always sworn by Bag Balm for a variety of uses, inlcuding as a preventative moisture barrier. Good stuff. Gin [ more ]
rachelraven When my daughter was little, we loved the Burt's Bees zinc oxide ointment. It smells so much better than Desitin! I hate Desitin. Also, once she had a bad diaper rash, and Lansinoh lanolin cream for nursing (ie. breast protection) REALLY cleared her up. You can't use it if you're sensitive to lanolin, obviously, but it was amazing. I'd also recommend giving that a shot, if nothing else is working. [ more ]
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J-Pouch ForumsGeneral Discussion
pouch removal
SH shawne h
shawne h hi jan have given much thought to your advice and although I believe you are correct in that I should do the ileo first and wait on the rest I intend to go ahead with the surgery as discussed with the surgeon I see my family Dr soon and will ask about seeing a endocrinologist in regards to a plan for the surgery and to deal with the taper. I just do not want to have two surgery,s and I am afraid of the unknown if I still have the inflammation in the pouch after the surgery I have only... [ more ]
Jan Dollar Yes, you can still have problems by having a diverting ostomy and leaving the pouch in place, but you may be able to taper off the prednisone and deal with that without having to deal with your chronic pouch issues as much. Basically, it can buy you time. http://www.nadf.us/adrenal-dis...renal-insufficiency/ You will need to get your prednisone below 5 mg before you know if your adrenals will be stimulated to produce cortisol, or if they are permanently suppressed. You cannot just taper off... [ more ]
shawne h thanks Jan I have thought about that but have read some postings from those who have left their pouches in and have had problems with discharge or inflammation and needed to go back and have them removed . My thought is to wait until I have surgery date and wean down on the pred until I am off a couple weeks before that date I am now at 12.5 started at 25 as I lived on ensure for 6 months before I started on the pred feel I can do it again. do you know at what dosage do your adrenals star to... [ more ]
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J-Pouch ForumsGeneral Discussion
It happened again - is it only us !!!
G Gumnut
Jan Dollar Actually, a catheter will not do the job of a NG suction tube. For one, it is too short, and it is designed for gravity drain, not suction. A nasogastric suction tube has a second line for air to come in. This prevents the tube from sucking up against the the stomach wall and causing an ulcer. There are also feeding tubes that are smaller diameter, and as long as the suction tubes, but do not need a second line for the air to come in. I actually had both in place after my surgery, with the... [ more ]
CTBarrister Originally Posted by Gumnut: IF there is a next operation, we will insist that the nasogastric be put in whilst the operation is being done and that will hopefully save the upset and discomfort ( pain really ) that comes from the build up - to having to have it finally done a few days after surgery . . . That is not going to happen. There is no need for a NG tube unless a postoperative ileus develops and in most cases they don't. If it develops, they will put one in. It is not a pleasant... [ more ]
CTBarrister Originally Posted by Michael: But a vomiting j-pouch patient isn't exactly in their wheelhouse. But if you were at a J Pouch facility they would have gotten it right. Back in the day (early 1990s) there used to be a "one size fits all" NG tube that looked too big to be thrust down my tiny nostrils. I resisted while vomiting and it was forced down by a doctor that physically overpowered me. I must say that it went down much more smoothly than I would have expected (which is not to say the... [ more ]
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J-Pouch ForumsGeneral Discussion
butt rash
U UjohnjC
Fight like a girl Hi UpjohnjC...I'm so sorry you are in so much pain. I know what you are going through. I have tried so many oinments and remedies for butt problems too. I found out that most of my pain is coming from a fissure also. Anyway, I use a sitz bath as much as possible (warm water and epsom salts), coconut oil, lidocaine gel at 5% (prescription only) and also the dr. has me using b&o suppositories (belladonna & opium) I don't use t.p. I use warm moist papertowels, the really soft kind. I've... [ more ]
UjohnjC also when i hold it bin it burns so i have to go [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Shen's appt
FL Fight like a girl
Fight like a girl Hi Pouchomarx...I was also told to try this hyperbaric oxygen therapy by Dr. Shen...but in the long run he is also certain adhesion surgery too. I still am waiting for some kind of approval from insurance co. yet. It appears that cleveland clinic has a chamber in southpointe hospital, but there is no way I can go every day, for at least 2 months, to 2.5 hour drive from home on top of that. So I found a hospital closer to me, but they have never had a patient with j pouch to get proper... [ more ]
Jan Dollar Takes about two hours per treatment. That does not include your travel time of course. http://www.mayoclinic.org/test...-expect/prc-20019167 Jan [ more ]
Pouchomarx So basically, is that what consists of this chamber as far as time goes? I would need to do it for like 2 hours a day once a week for however long? I have heard at least 20-30 treatments? I cant take half day off of work every week, for one I dont have that much vacation time and two, the vacation time I do have I want to spend with my children. I am emailing him back and telling him this is not an option for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Ileostomy Leakage
M MeganB
Jeffsmom Megan, have you tried a convex waffer? They helped my son when his stoma was under his skin. Also make sure you are getting that inner seal really well. Also there is something to help make the wafer stick better, the name escapes me at the moment. Thats all all I can think of for now. dianne [ more ]
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J-Pouch ForumsHelp! Need advice now!
Is this normal?
Laura MemLaura Mem
Laura Mem Originally Posted by Jan Dollar: Yeah, you can even have your primary doc examine you and refer you for imaging and/or to a surgeon if he feels something unusual. You need reassurance, not a dismissive attitude. But, if you feel well and everything is working right, it probably is just scar tissue. Jan Maybe scar tissue, since I have had eight major abdominal surgeries that could be a possibility! [ more ]
Jan Dollar Yeah, you can even have your primary doc examine you and refer you for imaging and/or to a surgeon if he feels something unusual. You need reassurance, not a dismissive attitude. But, if you feel well and everything is working right, it probably is just scar tissue. Jan [ more ]
MelissaCompton Hummm if you do not think it is normal I would go see another doctor. The one thing I learned through this rollercoaster is to always get another opinion and if you are not 100% sure it is right go for another. Best of Luck to you! [ more ]
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J-Pouch ForumsGeneral Discussion
Advice to coming off anti-biotics?
slightly_creativeslightly_creative
slightly_creative Yeah that makes sense, I'm functioning fairly well taking two of each, twice daily, maybe I'll play around with dosages by dropping one of flagyl daily & see how my body reacts! [ more ]
Scott F Insurance coverage in the US is spotty for VSL #3 DS. My insurance covered it for years, but began refusing to about 16 months ago. I fought with them for a year and finally got them to agree to cover it (including retroactive coverage). I take two DS packets twice a day, and I don't let myself forget. The key to tinkering with meds is finding something that really works first. Once that's stable you can make a single change and pay attention to the results. [ more ]
slightly_creative Thanks Scott & CT I apologize I meant Flagyl and alcohol, got mixed up with the two. I might try to take a dose of both once daily as; like you I find it sometimes inconvenient trying to avoid consuming something else that shouldn't be taken close to the meds. I take VSL whenever I actually remember to mix it in with my yogurt; if of course it isn't near the time of taking my anti-biotics. I will ask my surgeon about VSL DS, however I'm not sure I've seen it before, I'm in Canada and... [ more ]
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J-Pouch ForumsGeneral Discussion
Gas gas gas and discomfort- ugh!! SIBO???
jipalmerjipalmer
jipalmer Thanks for all the replies! As of right now my GI doc has put me back on xifaxan for a month. Fingers crossed (and I hope I'm not jinxing myself) but I'm already starting to feel a little better! He also wants me to try VSL#3. I'm going to post a new topic regarding that but have any of you tried this?? [ more ]
rebel Hi Shainy Have you tried ' Soluble fiber ' and 'probiotics yogurts' together?, you should see an improvement after a couple of weeks. Originally Posted by Shainy: would drinking a coffee a day help flush out the pouch/bowel? I've heard people say on here it helped with pouchitis etc. so I drink one or two skinny lattes a day. [ more ]
Shainy would drinking a coffee a day help flush out the pouch/bowel? I've heard people say on here it helped with pouchitis etc. so I drink one or two skinny lattes a day. [ more ]
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J-Pouch ForumsGeneral Discussion
Iron deficiency Anemia and Jpouch
M Marybeth6207
mgmt10 I get an IV push of Feraheme when my ferritin levels get low. Usually every 4 or 5 months. I see a hematologist regularly for this. (I recommend seeing one if you cannot get a handle on this) I've been dealing with iron deficiency anemia for a while now. Oral iron and iron from foods do not help me. I am learning that this is quite common with j pouchers. [ more ]
skn69 Yt, I just read aboutt he Chia seed but beware...if you are bleeding somewhere or taking anti-inflamatories then you should becareful...they have an anticoagulant side effect. Sharon [ more ]
ytcrockpot I am also iron & D deficient, I could not take iron pills, so I did research online to find out what else had iron that I would be able to tolerate. I found out the hard way that doctors only know about pills and not about food or nutrition. I take chia seeds for the iron, calcium and it also helps to absorb water. I also take vitamin Calcium + D supplements that are gluten free and black strap molasses which has iron in it. I hope you find what works for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Good GI in Northern Alabama
A AlabamaMike
SwollenColon I've been using Miles Greshan in Trussville for the past 8 or so years. I also saw Dr. Brasco in Huntsville a few times back in '06, but when we had our initial discussion about the possibility of surgery, he ruled out the j-pouch completely and said a permanent ileo is what he'd recommend. I didn't go back to him after that. Dr. Gresham is as good as any other GI I suppose.......I think they're all somewhat hamstrung when it comes to treating UC since they can really only go down the list... [ more ]
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J-Pouch ForumsGeneral Discussion
What do you do for fruits and vegis??
MelissaComptonMelissaCompton
Former Member Just stick with the soft mushy stuff, they're gentler on your system than leafy vegetables or hard skinned fruit such as apples, pears, grapes, etc. [ more ]
davek Thanks for all the replies. I am 12 days post j-pouch and doing much better. Had my follow-up with the Dr. and wound looks good. I was told to take Gass-X for the cramping and gas; this has worked good for me. Bm's are down to about 10 and controllable now. Going to sleep now seems to be the issue with getting up several times before i can fall asleep. [ more ]
Scott F I'll echo what CT wrote. A J-pouch doesn't rule out any foods, and intolerances or sensitivities will generally be individual. Beyond that, there are certainly classes of foods that tend to be thickening, thinning, or gas-producing, but J-pouchers don't uniformly need the same things in these areas. [ more ]
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J-Pouch ForumsGeneral Discussion
Does tramadol slow down the bowel?
skn69skn69
skn69 Thanks Jan, For some strange reason the rhumy doesn't consider it at all in my treatment...he is all about pain control but was willing to sign off on a 'Thermal Treatment' specialized in D'Ehler's-Danlos...it is a hot water/sea water/thermal spa treatment. They last 2-4 weeks (obligatory to get results and for it to be reimbursed by healthcare)...I just missed this year's session (mid April...But I just found out about it tonight)...there may be some sort of other site that has one for... [ more ]
Jan Dollar Sharon, this sounds like the most positive news to date for you! You really need one practitioner to coordinate all your treatment, and this new referral sounds like the one. I really do think that most of your symptoms have this common thread of Ehler's-Danlos. I would have thought the rheumatologist would have been the one, but I guess you needed someone with a special interest. Fingers crossed for you! Jan [ more ]
skn69 Almost done workwise...a couple classes left, tons of finals to correct and then free! I am back to working out (a wimp workout but still...) most days for 2hrs, sort of walking, climbing a bit, a touch of pilates and a bit of stretch...the core muscles are happy, the abs strong and my lower back and legs are feeling better...but nothing is going to ever get this pain to go away. My x-rays look like a bonsai tree. My spine is twisted, rotated and curved. 1 leg is over 1.5inches shorter due... [ more ]
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J-Pouch ForumsGeneral Discussion
Looks like they will take my colon.
D DMM
DMM Thank you, I will keep the board posted. Every situation appears to be different. I have no symptoms of anything and yet the detection of HGD sent the GIs to immediate surgery because if you have HGD and UC the standard of practice is colon removal. I took two blood tests called Promethious and both were negative for UC or Chron's but still the fact that I had some sort of bowel disorder briefly fifteen years ago has convinced them that removal is the only option. Also they describe the... [ more ]
CTBarrister DMM, Please keep us posted on what happens to you. Your case has some significance for people on this board, including myself, who may be in the same situation down the road. As I'm sure you know, with J pouch surgery, the rectal cuff is left in, and that is the area where dysplasia or cancerous cells can appear in persons with J pouches. I have a 43 year history of inflammatory bowel disease, 20 years with ulcerative colitis, and 23 years with a J pouch that has annually shown inflammation... [ more ]
DMM I agree, I learned more today about after effects than in 10 months of hospital visits. I have the best colon surgeon at Johns Hopkins waiting with his scalple at the ready. As soon as something definitive appears I will give up the fight. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scleroderm
L LisaT
Jan Dollar I agree with Scott. Scleroderma is a rare disease that is very difficult to diagnose. Even if you have a positive test for the antibodies, you are not manifesting physical signs or symptoms. So, it is possible that sometime in the future you may develop scleroderma, but you also may never manifest the disease. You cannot diagnose it by one blood test. http://www.sclero.org/medical/...-to-z.html#diagnosis I also had chronic low back (sacroiliac) pain and foot pain (Achilles tendinitis) that... [ more ]
Scott F I think your doctor is giving you good advice. The only issue is that you *might* get sick, which is also true for everyone alive. At the same time, this *might* be nothing at all. Why jump on the scary/awful "might" instead of the positive one? [ more ]
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J-Pouch ForumsGeneral Discussion
Biking and bleeding
Linda2Linda2
Linda2 Just scoped in February, both ends and aside from mild pouchitis I am good. thanks for responses! �� [ more ]
Jan Dollar Gee, after the number of years post op you are, it probably is as healed and toughened as it gets. If it is very minor and resolves quickly, I would not worry too much about it. But, if it has been a while since you've been scoped, it would not hurt to get things checked out. Jan [ more ]
Linda2 It was mild bleeding. Will the zone toughen up if I keep riding? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Flying with ostomy
JeffsmomJeffsmom
Jeffsmom Hopeful11, thank you! I mentioned to him that they may question him, but not to get upset. See, he also has Aspergers, so I have to warn him of every possible situation. And as luck would have it, the kid gets to fly first class! I'm so pissed, I've never flown first class. This is his second time! I used points for the flights and he and my husband were upgraded to first class. Why can't I have that kind of luck! [ more ]
CTBarrister It really depends on the airport. I recently flew to Tampa and they were using a canine and everyone waiting in line was sniffed by that dog, I presume for drugs and explosives. Fortunately I did not see the canine (looked like a German Sheperd) alert to anything. He sort of did a quick sniff of me and moved on. I don't know how a dog like that would react to an ostomy but I would certainly tell the TSA agent before he gets to you. [ more ]
Hopeful11 Hi Diane, I've flown frequently since getting my ostomy. I find that with the body scanners my ostomy always shows up, so I've developed a very easy method that has worked countless times. I just verbally (quietly) let the TSA agent who is immediately next to the scanner know I have an ostomy and where I have my medical supplies ("Hi sir, I have an ostomy that's going to show up on your scanner. Also, my medical supplies are located in that blue bag over there."). Experienced agents just... [ more ]
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J-Pouch ForumsGeneral Discussion
One for the gentlemen..semen brownish shade
dgtracydgtracy
dgtracy Thank you both. : ) I love that I can still come here looking for answers on something that may or may not be related to j pouch. [ more ]
CTBarrister The link I posted earlier said bike riding jostles the testicles and is a frequent cause of this brownish semen phenomenon. Ironically the group leader of my CCFA support group is a very fit guy with J Pouch who bikes avidly (does 50/100 mile bike rides) and I will ask him if he has gone through this. [ more ]
Jan Dollar With the combination of salicylates AND bike riding, I'd bet my money on that, rather than something ominous. But, yes, even a dilation would be enough trauma. It can take time for the blood to work itself out. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Going on holiday - Safari
W WatfordWill
CTBarrister Never been on an African safari but I have been on all day fishing trips in very rural areas of the USA where there were no bathrooms or facilities of any kind. I packed toilet paper and did as the bears do- crapped in the woods. My only reservation in doing same in Africa is that there are carnivores like lions and crocodiles that might bite you in the ass as you squat down.....or worse. [ more ]
CeeeeCeeee When I travel on a tour I find I am very careful what I eat during the day in order to control the urges and frequency to use the "bathroom".....whatever it might be! I make up for things once we are settled for the evening and I know a western style toilet will be easily accessible. I just am not too great at squatting and so I avoid that kind of "toilet". I work on keeping well hydrated. [ more ]
Scott F I think it depends on why you're going 8-10 times per day. If this frequency is a matter of comfort/convenience, and you could readily hold it another hour or two at any given time then you should be fine. If you must urgently use the toilet every 90-120 minutes during the day you could find yourself between bathrooms instead of at the bathroom. Why not try this at home, where it's safer, and see how often you *really* must go? You might find the answer extremely liberating. You also may... [ more ]
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J-Pouch ForumsGeneral Discussion
Sangre De Grado to reduce frequency??
MB mary beth
mary beth Thank you, I have the powder (different brand) and will give it try! Yes shes only 6 weeks out but it seems like forever. Im thankful I have this site for info, advice and support but I have to admit, it can be discouraging because most people who post are having problems. The surgeons and GI made it sound like no big deal having your colon out, its only to absorb water. Fact is it´s a major deal and I wonder if my baby will have a normal life. I know I need to have patience but it is so... [ more ]
boy's mom I just re-read your first post and see your daughter is only 6 weeks post take down. There is a huge adjustment period - I think for some people a year...But I wanted to clarify acacia comes in powder form. It can be mixed with water to drink it. My son won't. That is why I put it in (size 00) capsules. [ more ]
mary beth Hi (boys mom). Thank you I will give that a try! I had bought acacia fiber in powder form but someone told me it was a lot harsher than phyillum so I was scared to try it. I´ll go get the liquid form and give it a shot! Yes its very difficult keeping them on a restricted diet. She is out with friends quite a bit so who knows what she eats and doesnt tell me. But I think she is finallly realizing the importance. I cant expect she wont cheat here and there, not realistic for anyone! But... [ more ]
See all 9 replies...
J-Pouch ForumsPouchitis
Pouchitis diet
F Fazz
fatima ❤️
Scott F There are different ideologies about carbs, and different reasons to consider avoiding certain carbs, so phrases like "healthy carbs" and "good carbs" can get you some wildly conflicting opinions. Carb reduction in general seems to help some people avoid or manage pouchitis. Reduction of specific carbs has been advocated, but the evidence for any connection to pouchitis or cuffitis is weak. Having said that, if I were trying to reduce carbs selectively, I'd try the low FODMAPS diet first. [ more ]
CTBarrister See this thread: https://www.j-pouch.org/topic/s...all-that-other-stuff [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Surgery for leaking at night
M Mark01
Mark01 My doctor said it's something to do with the stricture blocking it up and eventually it builds up and liquid just gets through and it just comes out while I sleep. Sorry I can't remember exactly what he said [ more ]
boy's mom My son also has issues with nighttime leakage. But he has plenty of good nights too. It seemed to me the leakage is tied with what food he has eaten late in the day ( fruit, chocolate) though I cannot 100% tie it to that. I was thinking it is the food tied in with the fact that he is a deep sleeper because he can have a week of good sleeps than a night or two of leaks etc....Why would a stricture cause night time leakage? Thanks. [ more ]
Mark01 Sorry I worded that wrong. They know I have a stricture and they think this is causing the leaking. I've had it dilated under anaesthetic a lot of times and it doesn't do anything? Is there any other options such as surgery? Thanks [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Leg cramps and now arm cramps
LewLew
CeeeeCeeee Sharon......I like my gin "neat"! Two large olives, ice and gin are my favorite. Thank God my J-pouch agrees! In fact, the biggest pluses for me in having my colon removed and a J-pouch created was regaining my ability to drink martinis and eat mega salads! What more could a person (me) wish for? [ more ]
Lew Dianne I think we were using Ivory Soap too! Regarding the magnets, my wife went to the Dollar store and bought them (a lot of good stuff ones out of that lowly Dollar store LOL). I have to believe it was the magnets that stopped my restless legs. (Really not something I would normally put my faith in LOL). Lew [ more ]
Jeffsmom Lew, what kind of magnets? dianne [ more ]
See all 25 replies...
J-Pouch ForumsHelp! Need advice now!
Seal leakage with illeostomy
D.D.D.D.
D.D. I think your last suggestion is what could be happening. I was thinking the same thing. Thanks for replying. [ more ]
Jan Dollar Maybe with the morphine on board you are just active enough to break your seal, that would have held if you were not as active. I am thinking that maybe you are bending and twisting more. If your ostomy placement is in exactly the wrong place, it might make a difference. Another thought is that the morphine slows/relaxes your gut enough to cause more retraction (I am assuming you have a loop ileostomy at present). A retracted stoma can cause leakage under the wafer. A convex system and/or... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
powdered green drinks!?
V Virdent
skn69 I used to juice tons of fruits & veggies then when my budget was tight I tried buying green powder (it is actually cheaper than buying bushells of veggies but less 'fresh')..also.didn't take to it. No pouch problems (except for the colour of the output...a little scary the first time)... I didn't notice a sudden energy burst but then again, I never usually do (except with skinny girl)... I also bought green goodness...a green juice full of green goodness (or so it says)...I like it, its... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain/cramping
N nathan1975a
nathan1975a Thank u for the reply any advice is welcome [ more ]
Jan Dollar Many of us suffered with inflammatory bowel disease before colectomy, and we also have IBD related complications post op. But, for you, that does not seem to be the case. A couple of things come to mind. First, and most likely, is the probability that you have problematic adhesions (internal scar tissue that prevents normal movement of the intestines). These do not show up on imaging, unless they cause an acute complete obstruction. Anyone who has had abdominal surgery can have adhesions,... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Gas pain and best way to fart..
T The-SilMarillion
CeeeeCeeee I look forward to that blast of gas in order to clean me out efficiently. Without it I never feel really empty. [ more ]
Spooky I find that the only way I can "safely" pass gas is to lay on my back with my knees drawn up to my chest. For whatever reason, this usually allows me to pass small amounts of gas without passing stool. Obviously though, this is really only something I can attempt in the comfort and security of my own home. After 7 years with the pouch, I've long since resolved that it's just easier to find the nearest bathroom. [ more ]
rachelraven I dunno. I've never had an accident passing gas. Just, like I said, can't do it standing up. [ more ]
See all 13 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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