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J-Pouch ForumsGeneral Discussion
How do you know you need dilated?
C Chevygirl88
dgtracy Sounds like a stricture to me. i just had my 3rd one tuesday 5/5/15. if your insurance ran out i highly suggest getting one. i know its sometimes easier said then done but if we dont have health insurance and something goes awry it gets expensive faster then you can say stricture. [ more ]
rachelraven Usually a rectal exam is all you need to see if you're too "tight." My surgeon *only* dilates under anesthesia (says it's easier on BOTH of us). I now self dilate with a metal Hegar With my surgeon's blessing. It is very doubtful an ER would feel comfortable with performing a dilation. [ more ]
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J-Pouch ForumsGeneral Discussion
use of antibotics
SM Steve Mac
GraceB CT You are right My doctor never told me to stay away from carbs but he did tell me to watch my sugar intake. I found out on this sight about carbs and sugar. I should have realized that because carbs turn into sugar and carbs was one of the foods that I didn't have pain with digestion outside of getting pouchitis. [ more ]
Jan Dollar Often it is a process of elimination. If you respond well to antibiotics, yet there is no indication of pouchitis or Crohn's, then SIBO is a likely culprit. We are more prone to it than those with a colon because we lack the ileocecal valve that separates the colon from the small intestine. So, bacteria can travel upstream from the pouch into the upper small bowel. This is one good reason not to try to reduce your frequency too much, because fecal stasis just promotes more bacterial growth... [ more ]
Fight like a girl Hi Jan..how does one know if you have SIBO...maybe this is my culprit too. It's amazing how carbs and sugars can hurt ones' body. My daughter has severe eczema and I often wonder if diet can help her too. I've read alot about sugars and carbs and never heard of sibo. Any info would be greatly appreciated. I'm having what appears to be a flare up again of pouchitis or may cuffitis. My bottom is raw again and cramping, diarrhea like stool, almost granular like and leakage. Dr.Shen wants a lab... [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics
G GraceB
GraceB HI Scott I didn't think of that. I do remember when I first started to take vsl which was a few months after surgery I would have that burning butt so I stopped. About a year later I started to take it again It did bother me in the beginning but I stayed with it and it was ok. I didn't think it was the antibiotic that I was taking for bronchitis was the cause of the burning I was having. I will have to try it again now that I am off the antibiotic. I still take cypro and flagyl rotating... [ more ]
Scott F Grace- If anything your effective dose of VSL is reduced by the erythromycin. Why do you think it's the VSL and not the erythro? [ more ]
GraceB thanks jipalmer I will look on line I have been taking vsl for sometime now but I don't know why for the last couple of weeks it has been bothering me. I may try it again. I have been struggling with bronchitis so maybe with the erythromycin antibiotic that I have been on is the reason Thanks again Grace [ more ]
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J-Pouch ForumsGeneral Discussion
10 Year Pouchiversary !!
I ian337
Lew Congrats on the tenth anniversary. I'm coming up on 6 yrs at the end of summer, so far, so good! Few bumps on the road but fortunately help from the group has gotten me through with no major issues. Best Wishes Lew [ more ]
aka KNKLHEAD Thanks for the story. You're and optimistic guy and appreciate the post. I hope you continue to do better and better and enjoy your daughter and family! [ more ]
Fight like a girl Hi Ian...congrats!!!! mine has been 26 years...and I had a great 20 years!!! no problems up to 6 years ago...so yes, God is good!!! Stay strong ..enjoy being a daddy. I became a "Nana" 2 years ago...she is a firecracker...my grandaughter is tiny but packs a punch! My mom says she takes after me..I just pray she didn't get my medical genes (right!) Best of life to ya. Patti [ more ]
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J-Pouch ForumsHelp! Need advice now!
questions to aka to screen to find the best doctor
P Prescott
Scott F For my nephew's J-pouch (he was 8) a pediatric surgeon and colorectal surgeon worked together in the OR. That may not be easy to arrange, but I think they were glad to learn from one another. Very few surgeons will have done large numbers of cases on children. If you can find a colorectal surgeon at a children's hospital you might hit the jackpot, but such a combination might not exist. [ more ]
Jeffsmom Prescott, definitely use a peds doctor. And ask what ever questions that YOU feel are important. My son had UC since he was 6 years old. This is your child and I believe ask away! I know surgeons can be prickly, at least ours seemed to be, but he was excellent And was very good to my son. That's all that mattered to me. But my husband asked him how many surgeries have you done, what is your failure/complication rate. He was very open with us and answered every question and did not seem to be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diet
ScottishRoseScottishRose
CeeeeCeeee I am one of those J-pouchers who don't stay away from culprit foods or drinks! I take precautions before eating/drinking problematic foods. Usually, all foods and drinks are pouch friendly for me but every now and then the opposite occurs. So, it is prudent for me to smear on (and a little in) a barrier cream like Calmoseptine before partaking of foods which will cause me pain. I do realize that once the problematic food/drink is out of me, the burning, etc. will be gone......like magic! It... [ more ]
Jeffsmom I would suggest staying away from ginger, tomatoes, anything citrus. My son also had problems with watermelon. Also pepper. its all trial and error. Good luck! [ more ]
rachelraven You'll not find 2 pouchers with the same triggers for food irritation. It's kind of like trial and error, and what is bothersome at first, may not be 6 months, 1 year, 6 years, 10 years etc. down the line. I could eat anything at all, with minimal or no issue, for 20 years. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pap smear abnormalities and pouches
U UKSue
Jan Dollar I agree. She probably got her wires crossed, assuming all colon cancer is the same. But, overall, any cancer diagnosis sort puts you at higher risk for another cancer, just like UC puts you at risk for other autoimmune diseases. I guess it just highlights your inate flaws. Nevertheless, it sounds like you got a first rate consultant in a quick time frame, and that is what matters! Looks like things are going in your favor so far. Jan [ more ]
thumprhare My guess the nurse may have been thinking Lynch syndrome. Your case doesn't sound like that though. Heal well and keep us updated. [ more ]
UKSue I thought I would update. I had my colposcopy and it was carried out by an extremely experienced gynae consultant. He immediately pointed out a tumour which he said will 99.9% be cancer as there isn't anything else it is likely to be. He feels it looks localised and I may get away with just a cone biopsy or hysterectomy if nothing has spread. He has said I was not at any greater risk from my previous cancer as it didn't involve the rectum and was colitis - associated. I am having an MRI on... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Did anyone have pouch removal after pouch failure? Please discuss with me, thanks...
CM Cheryl Minn
Cheryl Minn I wouldn't even consider this bc of the possibility of pouchitis. This is my problem, pouchitis, antibiotics and probiotics do not work with me. I am going for a sigminoscopy on Thursday to see if the problem is anything other than pouchitis but I doubt it. I am strongly considering removing the pouch and getting a permanent ostomy outside bag. The pain from the pouchitis is just unbearable! This whole thing has been a nightmare, I'm seeing a psychologist specializing in chronic pain yo help... [ more ]
BillV The BCIR, like the closely related kock pouch, is an internal pouch with a specially created valve that retains body waste until it can be conveniently emptied (typically 3-6 times a day) using a small plastic tube (catheter). It is created using a short section of intestine and does not require an external bag that can leak, cause skin irritation or present other quality of life issues. These two procedures are used as an alternative to an ileostomy and for those with problematic... [ more ]
Cheryl Minn What is a BCIR? Is that different from a pouch but not an ostomy bag? Thanks so much for your quick response. I just don't have the money or the health insurance to go to anyone at the Cleveland Clinic. I live in NY and went to Johns Hopkins in Md. for the rectum cuff removal and now a I have a lot of medical bill debt. I can't do it again [ more ]
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J-Pouch ForumsGeneral Discussion
Surgical Consult to Surgery ??
lMluttlMlutt
Jan Dollar I was on high dose prednisone at the time of surgery AND overweight. But, I was deteriorating and my blood count was dropping, so waiting for a perfect scenario was not going to happen. Yes, I had complications, but I shudder to think what would have happened if I had to wait. Jan [ more ]
mgmt10 It was only a 2 week wait for me from surgical consult to operating room. It will just depend on what your surgeon's schedule is like. I was really, really sick going in but I wasn't on prednisone at the time so that was a big help for me getting in quick. Best of luck! [ more ]
Fight like a girl My surgery was in April of 1989 and I remember being on 60 mg. of Prednisone and other stuff for u.c. and the surgeon needed to wait about 2 months until they could taper me down off of preds. But then all kinds of crazy stuff happened to me, mostly because of was on preds for 10 years and on very high doses so my ability to fight off infection and to heal well just didn't happen. Hang in there...it may seem like forever when you are not feeling well and you just want to start feeling better. [ more ]
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J-Pouch ForumsGeneral Discussion
Input needed
nocolon-2000nocolon-2000
GinLyn Yikes! That is a lot. I have had a UTI before which hurt like the dickens; not exactly how you describe, but still. Isn't it annoying to automatically think everything is connected to the pouch? I sometimes forget that other medical things go on as well. And sometimes I get really annoyed about it, thinking "don't I have enough to deal with??!?" In any case, I hope you get some relief very soon. Gin [ more ]
nocolon-2000 I ended up going to the ER at 1:00 a.m. Thursday morning. The pain had awakened me for the second night in a row and I could not get relief. I got a shot of Dalauded (spelling?) and a nausea med through the IV. Very little affect to the pain but it made me happier about it. lol After blood work, UA, and CT scan, no kink, twist, or blockage. UTI infection. Somehow that can cause pain under the ribs. Walked out of the ER around 6:30 a.m. with a script for Cipro, Tramadol, and a nausea med. I... [ more ]
nocolon-2000 Thanks ladies! I went to my doctor today. She did an abdominal x-ray and took blood (4 vials!!!). She is checking my sed rate, white blood count, etc. Because she is not my GI, she encouraged me to follow up asap with a GI (a new one - yuck!). The waves of pain in my upper abdomen are horrible when they hit. I was awakened from a dead sleep just after 1:00 this morning for a round of "rip it out!". Doctor said if the pain continues - yes - go to the ER. I called a new GI and the only... [ more ]
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J-Pouch ForumsGeneral Discussion
SUBTOTAL COLECTOMY
H Harrison
GinLyn This does not apply to me at all, but I wanted to suggest you do a search using some of your key terms and/or re-post this with a different subject (for Crohn's or reanastomosis) which might yield more results. Best, Gin [ more ]
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J-Pouch ForumsGeneral Discussion
just wondering: surgery not convinced about?
GinLynGinLyn
GinLyn Oh, I hear you! I've only had one surgeon I wasn't comfortable with but thank God I didn't have too much to do with him. Emergency situation and maybe he did his best, I don't know. But since then I have been very sure -- as much as it is within my control -- to know my surgeon! Gin [ more ]
skn69 Hi Gin, In my case it was not really the 'surgery' but the surgeon who gave me doubts...I get willies when I feel pressured or rushed into a surgery whether I believe in it or not. I have had my share of failures but I have only really felt like it was a bad choice/outcome when the surgeon was a self-important jack-ass who told me that he was the 'only one in the world' who could fix me or save me whatever other B.S. that he was selling...I regret those surgeries terribly. It is as though I... [ more ]
GinLyn Yes, I think it is more about the positive attitude. We all know that can make a tremendous difference, but we all also know the realities of pain, exhaustion, etc. All we can do is try our best, I guess. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal cramps/pain
S Supersonic
George Shaikh I had the J pouch surgery 15 years ago. However, for the last 2 years now I am getting cramps every other day. However, these cramps are like getting punched in the stomach and they can last around 4 hours. I am totally incapacitated. Anybody out there with similar symptoms or advice. Thanks, George. [ more ]
Jan Dollar I think it is fairly typical. I learned too late that too many carbs= lots of gas= pain. The intuitive thing is to eat lots of carbs, but unless it is just rice, digestion can be delayed. Many of us develop wheat sensitivity post op. Sometimes it is temporary, but it seems that once they wipe out your gut flora with the antibiotics during surgery, it is a long road back. Milk based food can also be a culprit early on. But basically, unless you are severely bloated and not moving stool... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advice on having surgery
RichgRichg
CeeeeCeeee Partly because of my work schedule, I had my colectomy in the summer and kept my temporary ileostomy for a full year even though I could have had my takedown three months or so after my colectomy. I had the very best experience with my temporary ileostomy! Once I learned which ileostomy products worked best for me (trial and error) I could keep my "set-up" on for over a week before changing it. All of my UC symptoms were gone and I could eat/drink/do anything! I was very reluctant to give it... [ more ]
tentacle245 Should you have the surgeries and have a bag either temporary or permanent let me know i can give you some advice on best bags and companies depending on your build etc. Trust me changing the bag and ultimately finding the best products and time to change really is the hardest part in my experience and many others..more so than even the recovery. Take care. [ more ]
tentacle245 You're very welcome. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I wonder will it ever get better???
MelissaComptonMelissaCompton
Mysticobra I know we all have problems after this surgery but I think being a woman and going through this would be harder. I am not a woman by the way. One because of where our parts are located. I think or have thought of it many times after having a bad day and the mess it creates. I think am thankful that I don't have that problem... And we know what I am talking about without getting graphic... I can clean up fairly easy as compared to a woman. It just would make it that much more problematic. I... [ more ]
kta It took me a long time to heal. For at least 6 months, I lived on white flour sourdough bread, white meat chicken and peanut butter. Anything with fiber made me miserable. I finally was able to add Naked brand juices in small amounts, which is good because I felt like my body was falling apart because of the unbalanced diet. Slowly I added more variety. Now I can eat anything, but tend to avoid hot - as in spicy - foods. The only thing that worked for frequency was tincture of opium. Ten... [ more ]
ana Sometimes it takes longer time for your “new plumbing” to adjust. Be patient… I had my surgery 14 years ago and it took about 2 years before frequency subsided. At the time seemed worst than UC itself, but I did not have UC pain any more. I think for most people first 6 to 8 months nothing actually works. Flagile and Cipro did not do anything for me so I did not use much of anything in the beginning and I had to go 20-30 times a day for a long time. One thing I did I timed my food intake... [ more ]
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J-Pouch ForumsGeneral Discussion
Flying with Calmoseptine
S Shainy
Scott F From a longer term planning point of view, most of these products (Calmopseptine included) are available in TSA-acceptable sizes, less than 3 oz. Not so helpful the day before a flight though, unless you planned well ahead. I tend to keep travel sizes around of the products I need. [ more ]
Jeffsmom jipalmer, thank you! I will pass all info on to the boys, as I am already in Florida! Weather has been really hot and humid and cloudy and rainy a lot but I still love it! I'm out of the northeast! [ more ]
jipalmer Jeff's mom, My husband and I fly all the time with his Epi pens all the time. I put one in our carry on and pack one in our luggage...I don't bring it to their attention and they've never said anything about it. Just have to make sure it stays in the box with his name on it. [ more ]
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J-Pouch ForumsGeneral Discussion
Preparing for the operation
B Banks2015
SwollenColon Yea, that's different......you no longer have a rectum full of dehydrated and compacted stool that you push out as turds. You have a pouch that's about 2/3rds the size of a rectum, and it's full of liquid, or a thick-ish liquid. I've just been relaxing and letting it run out. A little push after that yields a poot or two and maybe a tad more liquid and that's it. This happens every 4-6 hrs for me right now, hopefully I can extend that time out some more over time, but pooping 6x/day with no... [ more ]
Banks2015 I mean when you are having a bowel movement is it different to having a "coloned" bowel movement? With this end ileostomy of mine I realise that my small intestine gets active for an hour or so as it removes the waste. I can empty my bag once it's full , I have that luxury without feeling any discomfort. Can I do the same thing with my pouch? [ more ]
CTBarrister The only "different feeling" I had inside was the absence of severe pain once the colon was removed. It was only after the colectomy that I appreciated the fact that I was living in constant pain and my body had adapted to tolerating it. [ more ]
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J-Pouch ForumsGeneral Discussion
Follow up surgery for Jpouch issues in June
LyndseLyndse
Lyndse Thanks so much Patti for the encouragement! Good luck on your surgery as well. Here's to health, What a crazy ride Lindsey [ more ]
Fight like a girl Hello Lindsey, I am also scheduled for surgery in June. I've had my jpouch since 1989...it was 26 years ago last week! I just started to have complications 6 years ago. Twice in the local ER hospital for bowel blockage...I know what you mean about ER's. The group that took over my care for 2 days didn't have a clue what I had (jpouch). One of the nurses kept lifting up my gown asking where is my appliance! Frustrating. But I'm back now at Cleveland Clinic and with the problems I've been... [ more ]
jipalmer Lindsey, I think that's a wise decision. Make sure you ask lots and lots of questions. When I went into it, I was under the impression it would be a quick fix as well. My recovery has been complicated by C-Diff and SIBO so I think my case is probably different from yours but in talking with a lot of different professionals and people on here after my surgery I have realized that surgery is not an easy fix. More surgery can lead to more adhesions which can cause more blockages. It's kind of a... [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking about surgery
L laundryqueen9
mgmt10 In my experience I could hardly eat anything when I was in a UC flare. I lived on plain chicken breast, rice and bread. Now, with my j pouch, I can and do eat anything I want. There may be certain foods that will "bother" me more than others but no where in comparison as to UC. When I say bother I mean I may have a few extra trips to the bathroom but I never have any pain or urgency. Best of luck to you going forward with the surgery. It's tough but worth it in the end. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sister just diagnosed in distress
MB Mountain Baker
Mountain Baker It looks like things are a little better for my sister. She's eating some and moving some. She's been waiting for her insurance to approve a prescription for Remicade. I have been trying to convince her to try VSL#3DS since she is now diagnosed with UC. I've also been trying to get her to have someone (a surgeon and hospital) in case she doesn't get better. I went through so much I don't want the same to happen to her. Theresa [ more ]
kta This post made me remember when I was so sick and was barely able to get up. We had a kind, motherly male Rottweiler who refused to leave my side. I was the only one who could take him out to go potty. It was so hard to go out; i just wanted to curl up on the lawn and sleep, but I managed the bathroom trips. I still believe that dog prevented blood clots. Hope your sister gets relief soon. [ more ]
Mountain Baker She isn't able to do much but lie in bed. I'll suggest to my brother-in-law that she do some moving to keep from getting a clot. Thanks, Theresa [ more ]
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J-Pouch ForumsGeneral Discussion
SIBO
T Thompson
jipalmer I had really really really bad gas after my surgery. It may have been a combination of things as I was diagnosed with C-Diff and SIBO but Bentyl, as Jan mentioned above, really helped. Does the gas feel like it comes in spasms? That's how mine felt at first and a Bentyl before every meal really helped. [ more ]
Jan Dollar IBS and IPS (irritable pouch syndrome) are pretty much the same. Antibiotics can help because the current thought is that there is some level of bacterial imbalance for many sufferers. This is why there are so many probiotics, yogurts, and the like, that are advertised to help treat IBS. While there may be no cure for IBS/IPS, there ARE treatments. Besides identifying diet triggers, there are probiotics, low dose tricyclic antidepressants (like Elavil), and antispasmodics (like Bentyl). [ more ]
Thompson Hi Scott, thank you very much for your reply. If it were IBS any suggestions why I felt so good on the antibiotics and was symptom free ? Apart from slight constipation but the horrible gas completely went. Furthermore, if this was IBS would the symptoms eventually subside? As I'm aware there is currently no treatment for IBS ? [ more ]
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J-Pouch ForumsHelp! Need advice now!
OPERATION TOTAL COLECTOMY WITH JPOUCH
bederyparisbederyparis
rachelraven I had my two step surgery when I was 19. My colectomy and J pouch formation with loop ileostomy was created in January; the takedown in May. My surgeries were in 1991, so no such thing as laparascopic for me, then. But I'd say I was doing fairly well after that open surgery at 6 weeks post-op. I was off that semester in college to convalesce, but honestly, I probably could have handled something like computer work, etc. at 2 weeks... unlike some folks, I quit my pain pump in the hospital,... [ more ]
Scott F Recoveries vary a lot. Two weeks is still early days after any abdominal surgery, so many people will be using pain medication at that stage, and everyone should be taking plenty of walks during the day, and will need ready access to a bathroom. I'd advise against committing to a full work schedule (even at home) two weeks post-op, and I had the experience of trying to write a work email at that stage and realizing I couldn't complete a sentence properly on the dose of oxycontin I was... [ more ]
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J-Pouch ForumsGeneral Discussion
Time for surgery..
WildOneWildOne
CTBarrister Originally Posted by WildOne: Clearly the benefits of having the procedure must outweigh the risks substantially - so much that I suppose everyone would still be on permanent ileostomy (correct me if I'm wrong, carries fewer risks, but is obviously more to manage). I think that is correct. In addition to your thread, I see two other similar threads started recently by other posters who are contemplating surgery. It seems like the biggest concern is how much recovery time will be necessary,... [ more ]
WildOne Thanks for the input jeffsmom and ctbarrister. CT I can tell you've been around here long enough to know that we folks tend to post more when we are having problems and looking for answers (as I'm doing here). And I do see there's lots of j-pouchers on here doing just fine and simply reminding us all that there is hope. Clearly the benefits of having the procedure must outweigh the risks substantially - so much that I suppose everyone would still be on permanent ileostomy (correct me if I'm... [ more ]
Jeffsmom Wild one, CT's discription is pretty accurate. My son was diagnosed at age 6 with UC. Have multiple rounds of steroids until age 14, had the steroids at least once a year for at least 5 years. At age 14 he had a very serious flair, but that was his last major flair. over the next number of years he decided he didn't need his meds because he felt fine. At age 23 had a colonoscopy and they found that his entire large intestine was ulcerated, inflamed and found at least 3 precancerous polyps. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Benefiber or Citrucel???
C Country
Scott F Benefiber didn't work for me, but Metamucil (and more recently Konsyl) have been great. [ more ]
liz11 everyone is different. my favorite combo that worked the best for me was benefiber, immodium, AND tincture of opium. What a cocktail. But it worked if I took dilengiently at specific times before eating and before sleep. meta. or citra never did squat. lomotil made me loopy and also didn't do squat. so message is.. everyone is different. Give something a fair go... and if it doesn't work try something else. good luck [ more ]
CTBarrister Metamucil rules, but for the specific issue you have, I would go with loperamide/imodium. [ more ]
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J-Pouch ForumsGeneral Discussion
Small Bowel MRI
LincslassieLincslassie
CTBarrister It's called an MRI Enterography and I describe my experience with it in detail here: https://www.j-pouch.org/topic/m...study-of-small-bowel [ more ]
Mysticobra I had x-rays done after a prep. They would give you a drink and x-ray it every half hour until it was through. No mri. But is was a long and boring process. I have to have it done again soon. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal spasm/extreme tightness
G Golfdrumst
GoldenGirl One thing that helped me was Proctofoam - a steroid foam that was inserted into the anus. There is another cortisone foam that is 10% steroid - can't remember the name. It is a prescription but helped with the spasms as it was an anti-inflammatory. This is a local treatment. I also would have to take Cipro at times to help decrease the inflammation which would then release the spasms. [ more ]
Mary O I don't think so, but you never know. [ more ]
jeane Thank you for the reply. Your situation sounds like it was painful and lengthy to get to where you are. I hope the solution you have found continues to work for you. I wonder if the allergies could have had anything to do with your anal stenosis as well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouch removal planned this week - freaked out
E EP
GoldenGirl Stop the fear! I had my pouch removed in January. I am a new person! You will be so grateful that you chose to do this. It will be tough at first but so worth it. I was back at work 6 weeks after surgery and had a total abdominal hysterectomy with the pouch excision (uterus, tubes and ovaries all adhered to pouch). You will wonder why you didn't do this before. And don't fear the ileostomy - small learning curve and you will be a pro. It is so much better than a toilet!!!!! Hang in there!! [ more ]
EP Dear all, thank you so much for taking the time to share your thoughts and experience. Been a roller coaster few days!! My gastro consultant and gi surgeon have been amazing and discussed my situation with Gynae surgeon who would do any surgery. Their preferred and safest option is pouch out but they have agreed for me to have less major surgery with end ileo with a small risk of sepsis re-occurring from pouch fistula. Although small there could be hope of a redo pouch in the future - right... [ more ]
Jeffsmom EP, I agree with Sharon. I would have a GYN consult before I let anyone remove my overy. Im assuming it's your only one? I lost one of my ovaries because I had a 6 cm cyst over a tumor that was engulfing the overy. I still have my other one. But doing all this surgery at once sounds like a lot to do and a lot of possible complications. Have them peel back the cyst. It should not take very long, maybe an extra hour or so. And I'd have my GYN do it, not a colon/rectal surgeon do it. I'm very... [ more ]
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J-Pouch ForumsGeneral Discussion
Question for successful pouchers
U UCBloke
n/a I've had my pouch 22 years and have gone through some pretty bad times with it (pouchitis, cuffitis, fistula, sepsis), but things have settled and doing much better in the last 4-5 years. Do you still get butt burn? BB, not so bad at the beginning, but the last 5-10 years, yeah, it's a fact of life for me anymore. I'm pretty sure it's due to RV fistula, however, I do notice worsening when eating hot, spicy foods (my fave, naturally). Do you still use cream each day daily? Yes indeed, pretty... [ more ]
Pluot Do you still get butt burn? No Do you still use cream each day daily? No, I haven't used creams at all for at least a year (almost two years since takedown) Are the toilet trips lengthy? (Amount of time spent in the toilet) It still takes me longer to empty completely than to urinate, but no, definitely not lengthy. Are you able to eat all foods? Spinach and leafy greens -- cooked or uncooked, it matters not -- give me increased frequency. I choose to avoid these foods most of the time... [ more ]
Lesandiego No to all answers. Except: No longer use mushroom soup as an ingredient, switched to using celery cream soup. Strange that I can eat mushrooms no problem, but the soup gave me nausea and diarrhea. Also, I must chew peas and corn (husk foods) very well, or I have trouble passing. I have a tendency to inhale my food. Sometimes when I go, think I am done, stand up to leave the bathroom, I have the urgency to go again. Rare, but it does happen. [ more ]
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J-Pouch ForumsOstomy & Skin
Brava Elastic Barrier Strips - FREE
B BLECCE
Holyfield47 Originally Posted by BLECCE: Hi Holyfield - I just got another free sample in the mail today from Coloplast...it's 2 SenSura Mio samples (2-piece Flex Drainable Ostomy Bag). Would you like it? If so, just message me your address. [ more ]
BLECCE Hi Holyfield - I just got another free sample in the mail today from Coloplast...it's 2 SenSura Mio samples (2-piece Flex Drainable Ostomy Bag). Would you like it? If so, just message me your address. [ more ]
Holyfield47 Thanks for the advice....I'll call them now. [ more ]
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J-Pouch ForumsGeneral Discussion
Antibiotics.. Does this mean
B Boda
Boda Thank you we are defiantly getting to the end of our rope and want her to get better. I will continue to ask questions of the doctors and try to figure this out. I appreciate all of you help. [ more ]
Jan Dollar You could repeat the camera pill endoscopy. Sometimes Crohn's colitis becomes small bowel Crohn's after colectomy. Yes, CT should be reserved for really necessary scans because of the cumulative radiation, but newer machines are better in this regard. Jan [ more ]
Boda Before she had her colectomy she had one of those pill cams and they said she looked great everywhere but her colon. It was part if he reason we decided on the jpouch. She wasn't responding to the high dose pred and continued to deteriorate. [ more ]
See all 14 replies...
J-Pouch ForumsPouchitis
Something Besides Pouchitis?
KQ Kevin Q
Kevin Q I was just at Cotsco again tonight and their brand of loperamide is actually $5 for a 200-count bottle, not $16! I misread the sign! I took 2 this morning and they worked better than the Immodium! For anybody with a Cotsco membership, I would highly recommend it, as that is a great deal and it works great. [ more ]
Catinthehat Buying imodium over the counter got expensive. My Dr. gave me a prescription so it is much cheaper that way. I usually take it with meals and I also use psyllium fiber. [ more ]
Kevin Q I remember taking Lomitol after my surgery and it working really well. I have considered asking my GI doc for an RX for Lomitol or prescription strength Imodium, but I guess I was just trying to do it with over-the-counter medication first. Although, I wonder if I should at least try the Lomitol again, in case it significantly helps and I haven't been using it this whole time. [ more ]
See all 87 replies...
J-Pouch ForumsGeneral Discussion
Please help me get my head in the game
SolomonSealSolomonSeal
Mike13 I think the main thing is patience! I too remember going thru all you mentioned. In time, you learn what works and what doesn't. I had my total colectomy when I was 17 heading into senior year of high school, had my Jpouch/takedown in spring of my senior year and 4 months later was off to college. Daunting it was but I knew I needed to do it. I learned about and adapted to my new jpouch and lifestyle while living with a roommate I had never met, and sharing a community bathroom/shower with a... [ more ]
Former Member Please stay positive! Ive had mine for about 5 days and I love it. I'm not liking the frequency and having to think about when to and no to go but it will get better. Just wondering... Is it usual to feel bloated before having a BM- then go to the loo and have minimal output or sometimes hard to go? I go quite a lot and the output varies but i get uncomfortable after i've had a small meal. Saying that- I have a higher output in the morning... Probably nothing right? lol [ more ]
mgmt10 I'm sure you don't want to hear this because in your head you already know BUT two weeks is way too early to know how your new j pouch is really going to behave. Your body need time to heal adjust. The first month (even 2 or 3) is generally rough. But I can tell you it will get better as the weeks go by. That is great though that you embraced your ostomy like you did. I had such a rough time with my ileo.....I never want to deal with one again. Best wishes.....I hope it all calms down for... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
new humira antibodies significance?
BM boy's mom
Jan Dollar The only thing I like better about Cimzia is that it is working when Simponi was losing effectiveness. I can't tell you what the best treatment path is for your aon. We all hope to avoid drug treatment post colectomy, but it does not always work out that way. Jan [ more ]
boy's mom Jan, could you tell me what you like about Cimsiz versus Simponi? Also, we had thought my son ( now age 14) would not need the anti TNF drugs post having his colon removed. What do you think about taking him off all meds but monitoring him closely - is there danger in the fact that he could get inflammation/flare? we would be monitoring him so would know to get him back on drugs if he deteriorated.... [ more ]
Jan Dollar No, it is not an indication of more disease activity. The antibodies are specific to the drug. It means that you need higher doses for the same effect, and it may mean that more and more antibodies will form in response. Essentially, you will need to switch to something else. I didn't even have antibody titers done, but knew it was time to move on when symptoms crept back. I've gone from Enbrel to Humira to Simponi to Cimzia. But that does not mean that there cannot be new disease activity... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Anal pain
T TerriG
rachelraven Originally Posted by jeane: Rachel how often do you self dilate? Do you do this every evening? I think I also have severe inflammation going on at this time. I can barely pass anything and I feel like I have this huge tennis ball in the back end and I have tons of pain. The tailbone pain is awful too. I think the connection is so tight that is why I continually get the fissures from straining to empty pouch. In short, the entire anal canal is a mess and canasa does nothing for me. This seems... [ more ]
rachelraven Canasa is mesalamine in suppository form. I never looked awful in there, but GI put me on them thinking I may be prone to cuffitis/swelling. I'm also on Humira, but not sure where we will go with that eventually (hope was it would close the fistula; it didn't). [ more ]
TerriG Originally Posted by rachelraven: My surgeon has had to do some anal dilations for me, but he's given me the A-OK to dilate myself. I bought a dilator set online. I can't reach well with a gloved finger. His advice was to pass the one daily (fortunately I'm open enough to pass the largest one, all is open). So I basically nightly do so, then put in my Canasa suppository. So far, so good. The dilators are called Hegar dilators. This is the set I bought. (I know it says "uterine," but these... [ more ]
See all 10 replies...
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 ]
See 1 reply...
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 ]
See all 5 replies...
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 ]
See all 5 replies...
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 ]
See 1 reply...

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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