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J-Pouch ForumsGeneral Discussion
Amal stenosis w stricture ? !
J jeane
rachelraven My surgeon will only do them under anesthesia. Says it's kinder for both of us. [ more ]
jeane Thank you Rachel. It concerns me that I have to modify my diet based on this issue as I love fruits and vegetables. Do you have them in the office or under anesthesia? My surgeon is non-par so I have been going to my GI every 6 months and have them under anesthesia. Glad to hear you are doing better. [ more ]
rachelraven I've had dilations of the anal anastomoses for narrowing/stricture. Had a few last year, and doing ok, but see my CRS in 2 weeks, and I know he'll want to do another. He ALWAYS wants to, to prevent problems now. But honestly, I've been ok. I also now completely avoid all overly fibrous foods that don't break down, and it helps a LOT on evacuation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture on CT scan?
M Megals
rachelraven Next time try milk of magnesia. It's non-stimulating. It's the only thing I can take that doesn't cause horrid cramps but I only need about 10mls, though, a full dose is too much. [ more ]
Megals It's very frustrating! I finally took dulcolax tab (had tried miralax several days ago) within about 2 hours I had a watery BM. Now I can't stop going and the burning is horrible. I feel like I can't win [ more ]
jeane I have a stricture and have your exact same symptoms. I had a ct scan a month ago to check for a fistula and nothing in my report indicated anything about a stricture. I would contact your gi. I get mine dilated every six months or so and I am going in next month as I have been struggling with mine acting up for over a week also. It takes several passes and straining to empty and when stool is formed it is very thin also. The symptoms are just miserable. [ more ]
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J-Pouch ForumsGeneral Discussion
best/worst foods
OZOZ
rachelraven I used to eat ANYTHING without issue, but these days, avoid nuts, seeds, mushrooms, corn, bamboo shoots, raw cabbage in bulk... I tend to be a bit narrow at the anal anastomoses site, and these are blocking foods. I'm lactose intolerant, and use almond milk. Whey protein kills me. I can eat cheese and yogurt, though. Can't do milk in bulk or ice cream without cramps. I can't eat raw apples, or stone fruits, they cause cramps, and I avoid beans and soy in bulk (gas, gas, GAS!). My best fruits... [ more ]
Pluot Most of the above are fine for me... This is a subject that is VERY subjective though. For example, I have no problems eating spicy or acidic foods, many people can't tolerate them. Carrots, winter squash, and potatoes are go-to veggies for me. They don't increase my frequency at all (unlike other veggies). Summer squash (like zucchini) increases my frequency a lot. Coconut milk wrecks me. Incredible amounts of gas. Most other foods don't cause noticeable changes for me. Honeydew melon and... [ more ]
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J-Pouch ForumsGeneral Discussion
supplies needed for home care after takedown
K kdmos75
grandmaof1 I hate Calmoseptine. It burned my butt so bad. I have two of them, and one not even opened. I use zinc oxide. I get it at Target in the baby department the UP & UP brand. Make sure you get the 40% zinc. I also love dubicaine. I had to order it through a website I think it was drugstore.com. I used both at the same time. Truly amazing. Dubicaine has pain medicine in it to help you out. Not much but just right. Good Luck and keep us posted. You will require a lot of resting. Take that time... [ more ]
Rocket Calmoseptine caused my butt to burn so my GI recommended Desitin which does not cause me any problems. Sometimes I just us Vaseline too. The toilet paper that Pluot mentioned was right on. It must be soft. After my take down, I had the misfortuante problem having further prolems so my stay in the hospital was a lot longer and the toilet paper in the hospital was like using Sand Paper. Good Luck Rocket [ more ]
mgmt10 I think Deathstalker covered it. (Hopefully you wont need those pads for your underwear!) I can't live without my Calmoseptine. It's very soothing and stops any itching instantly. Some people don't like it but I recommend giving it a try. But anything with zinc oxide in it will do. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
GI Dr at Northwestern, Chicago?
B beckysmom
Jan Dollar Private Messaging is not the same as IM. If you do not have your notification settings so that you receive an email, you will not know about it until you come here and see the flashing tab. Jan [ more ]
beckysmom Thanks. Maybe it went to spam? I'm going to resend it because I had another question if you don't mind. [ more ]
Dog Never got an IM, so I'll just reply here. Doctor Konstantin Umanskiy University of Chicago Medical Center Chicago, IL 60637 [ more ]
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J-Pouch ForumsHelp! Need advice now!
how long to wait for takedown surgery
K kdmos75
bladen88 I had my takedown 3 weeks after my first surgery but like everyone else depends on you as well as your doctor I feel as though I should have waited longer bc I ended up having two blockages from scar tissue and swelling after the second I was put on a TPN until it went down about a week and a half the first blockage was a bad situation I didn't get to see my doc but an associate of his and she didn't seem to care as much good luck to you! [ more ]
rachelraven Back when I had mine done, my surgeon used to ask me about the mucus discharge the J pouch was putting out, while it rested. At first, the mucus was more, then it slacked off. He used that "slacking off" as his indication for takedown... mine was almost 4 months to the day between first and second surgeries. Diet after? I was 19, and probably not as careful as I should have been (and pretty much ate whatever I wanted for the longest time), but I'd say hit your thickening foods at first... I... [ more ]
grandmaof1 I had mine done at 7 weeks. I ended up in the hospital 4 different times for dehydration and so the forth time she checked to make sure there was no leak and we went forward. She told me she had never done any that early so it would depend on the results of the pouch. Well she did a great job in both of my surgeries. She is so awesome. So 7 weeks for me. I am almost 2 years out. I also went home with a PICC line and glad I did. The reason I was in the hospital is because of dehydration. It... [ more ]
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J-Pouch ForumsGeneral Discussion
How much of the Ileum is used for constructing the J-Pouch
RJG-RossRJG-Ross
RJG-Ross Hi Sharon, "life giving me everything I desire"? Ha! Ha! and a Spanish Ja! The test for problems with Gluten is 4 weeks without, but supposedly ideally 3 months. After those 4 weeks, you see how you feel and you return to your original diet. If the problems had gone and return with returning to the original diet, then you have problems with gluten... But, supposedly it isn't only gluten. If you are Coeliac, you may have problems with all proteins with similar molecular structures as that of... [ more ]
skn69 Sounds couragous RJG, I managed to re-cut-out bread/cake/pastries etc for a whole week...until I made pancakes for hubby and broke down (I am a sucker for a fresh pancake!)and gobbled a few...a few days in a row So, I am still pretty good on anything flour based, mostly anti-gluten and only eating gluten-free candies, ice cream etc. No change. I am fighting some sort of arthritis based problem that goes from my back down to my feet...trying the gluten-free approach but I am not seeing any... [ more ]
RJG-Ross Thanks Scott! [ more ]
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J-Pouch ForumsGeneral Discussion
Best Way to Diagnose a Fistula
D DeathStalker
rachelraven I'm so sorry. I hate this fistula, but the seton helps. Doesn't mean it never hurts... it does, but it's at least not worse. [ more ]
DeathStalker I was afraid of this. I wanted them to do an MRI on Saturday on top of the CT Scan but they were more eager to just excise the abscess. I have a bad feeling that I'm going to have to deal with this issue again down the road [ more ]
rachelraven After my MRI, we did an EUA, but he had a hard time finding the tract (though he did), and placed the seton. Had we only done an EUA, he said he likely would have missed it, without the MRI/MRA results. CTs are not sensitive enough to show a small fistula tract. The CT I had showed nothing at all. You need the fine slices of the MRI. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Headed for a possible operation to eliminate J-pouch
B BarbC
Jan Dollar Barb, I presume your surgeon told you that incontinence was a possible complication of sphincterotomy? Sometimes it is permanent. That is why Botox injections should be preferred before surgical sphincterotomy. At least with Botox, the effects wear off after about 3 months. Hopefully, you are still in the period where this symptom can turn around for you. Nerve trauma can take 6-12 months to repair itself (if it is going to). In the meantime, you have to wait and see. Maybe at least a temp... [ more ]
Solomin Hi, I currently have a temporary ileostomy and I pass a white opaque fluid rectally. I am told that this is mucus. Perhaps it is same thing that you are passing. Good luck. Solomin [ more ]
CeeeeCeeee I was 60 when I had my first of two steps and am now 73. I consider myself lucky. My J-pouch gives me almost no trouble and when it does a course of Flagyl takes care of it all. Best wishes in finding the best answers for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Success with Flagyl for Perianal Abscess?
D DeathStalker
n/a Thanks so much for the info, deathstalker, I did not realize there were options to the rubber. I'm looking forward to changing over -- a bright spot in the world of fistulas/setons! [ more ]
DeathStalker They last way longer! The rubber ones that I had were tied together at the ends with silk. Over time, the silk breaks. on the other hand, the mersilene setons are tied together using their own material so there is no silk to contend with. Their diameter is also much thinner - think spider wire fishing line. Initially I was concerned that the reduced diameter would not permit flow but they worked just fine. If you want, have you surgeon speak with mine (Dr. Donald Colvin of Fairfax... [ more ]
n/a Thanks - I'm going in to have my seton(s) replaced next month, and will absolutely ask about this mersilene. I'm also wondering if they last as long as the rubber ones. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch removal
heverhever
hever Hi everyone, thanks for your replies, I've decided that should I need one more adhesion op then I'll have the J-pouch removed, sick of the constant toilet trips and butt burn, plus the specialist said my bowel,which now has a partial prolapse is massive,due to all the work it has performed over the years, and it would have alot less work on the bag. I have been depressed lately as all my meds were stopped for a year due to bad liver blood tests, but now have been restarted a few days ago, so... [ more ]
PoucherInTO Hi Heather I am 34 years old, had the jpouch for 18 years and had it removed almost 5 months ago. Anal pain, incomplete emptying (the jpouch can "fall" making is impossible to empty), chronic pouchitis plagued me for years before making the decision to go permanent ileostomy. I have ZERO issues with my ostomy, no issues with quality of life. I do what I want to do, eat what I want to eat and wear the clothes I want to wear. I don't even feel the bag anymore, and unless its full and time to... [ more ]
BillV Heather, high grade dysplasia in a critical area made it necessary to have my 30 year jpouch removed. I strongly wanted to avoid having the bag, which was a quality of life issue for me, and I was fortunate to locate a surgeon who removed the J pouch and gave me a BCIR (similar to a Koch pouch). The most difficult part of the surgery was the pouch removal due to significant dense adhesions from prior operations. My surgeon never mentioned anything about a long term pouch creating its own... [ more ]
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J-Pouch ForumsGeneral Discussion
Walking after 1st surgery; any weird feelings in stomach
LG LB Greenville
Dog Here's how it was explained to me: Your mind has an image of how your body "is." A portion of your body was just removed and your mind is now updating the image. Until she's used to these new sensations as "normal," she's going to feel them. After the second surgery, when the pouch is made, she'll probably have the same sensations. I had the same thing and seems perfectly normal to me! [ more ]
GinLyn Yup, normal. Maybe try walking a bit slower? It does go away over time -- or maybe I just got used to it. Either way, it comes in handy when wanting to gross out Grade 7 boys. Just drink something and jog in place; the sloshing sound usually sends them right around the bend! (In my job, this is a vital skill set...) Gin [ more ]
dtmack Hi there, I had the same feeling after my first surgery. It was a bit painful and very disturbing!!! It passed after a bit of time. I would not be concerned Best to you Derek [ more ]
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J-Pouch ForumsGeneral Discussion
Chewing with an ileostomy bag
G Goody21
Former Member ❤️
Dog I don't think you need to masticate it to goo. Just don't gulp your food; chew, savor and enjoy it. Kinda hard to do if you're still on the low residue diet though. heh [ more ]
GinLyn Yup, same here. Never had a food-caused blockage except for once when I ate a very large hamburger (with ALL the fixin's) way too fast and didn't chew very well... Gin [ more ]
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J-Pouch ForumsPouchitis
astonishing results for a antibiotic dependent jpoucher
R Rebe0505
Rebe0505 clouseau...rebe here..i wanted to clarify question you had ..if i was gluten free..the answer is i have removed all wheat the biggest gluten problem in addition to corn,rice,potatoes ...no exception..but i have not concluded that the home made yoghurt is necessary..i think trying to cut out above even more important in my case of sibo...also processed foods fyi often have gluten..but i avoid processed food almost completely..i use almond butter in jar but it just says almond butter and sea... [ more ]
clouseau Rebe0505, I am out of the country and have your book and have been trying to follow it as much as possible and have seen some results. You are right the book is a must. I want to thank you again for all your comments and help on this. I will do whatever it takes to get off antibiotics and while I am not off yet I believe I can reduce my dosage bit by bit. It is a lot harder when you are out especially in a foreign country and will be easier when I get home in several days. [ more ]
Rebe0505 clouseau sorry i did not see your text..but for the bacterial overgrowth the big thing here is remove all simple carbs,(starchy carbs and sugar)..you are confusing the gluten free with simple carb free..thus no grains with or without gluten..and no for my sibo i have not found the homemade yoghurt more beneficial than my faze greek yoghurt..so the main difference is the carb free that has gotten me off antibiotics..thus no grains of any kind,includes all pasta,bread,grain flour products,no... [ more ]
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J-Pouch ForumsGeneral Discussion
High B12
A Allison
Allison Ok, thanks Jan. As always, you are a great help. [ more ]
Jan Dollar Hmmm, I wonder if it is related to your ITP and splenectomy? Worth asking about in any event. I presume you are being followed by a hematologist? If you are taking any B12 supplements, of course you should stop them until you sort this out. This would include multivitamins. Jan [ more ]
Allison I had lots of blood work done. My ALT and AST were normal. I have had high levels once before, about a year ago but it went down. The only thing that stuck out was a high platelet count, but that is usually the case since I have ITP and had my spleen removed. [ more ]
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J-Pouch ForumsGeneral Discussion
MOVING RIGHT ALONG...
PouchomarxPouchomarx
Pouchomarx Skinny again though, at 140 right now. i need to get back up to like 155. i hope the odds are good for the suture repair to work. Could not handle a redo or permanent bag. [ more ]
aka KNKLHEAD Best wishes! The good news is your body will get a chance to heal. I've had a diverted loop for a month now and feel like a new man. I am married, but it would have been hard for me to pick up the ladies if I was not feeling well or tired. Feeling good is one thing; picking up the ladies is another and finding one that understands and is accepting of what you're going through is another! [ more ]
Jan Dollar Fingers crossed for you that the repair holds up! You deserve some good news. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
37 Weeks Pregnant and rectal bleeding.
MH Mrs. H.
Mrs. H. I do still have my cuff and after a blood test, the doctor said my CRP (inflammation) levels were higher than normal. I have a scope booked for Friday so I'll find out then if it's just hemorrhoids or cuffitis - though I'm having a fair amount of blood with small clots - not something I'd expect from hemorrhoids. [ more ]
Jan Dollar If you have a retained rectal cuff, it could be cuffitis too. Both of my pregnancies were before my j-pouch, but with each one I had mild-moderate flares of colitis that were presumed to be triggered by the pregnancy. Jan [ more ]
GinLyn That could be -- I had both of my pregnancies pre-pouch -- BUT it could also be something simple like internal hemorrhoids. I had these with one pregnancy and bled rectally. Not too much each time, but definitely there. My appetite also massively slowed down toward the 37-week mark; everyone is different. VERY good idea to get it checked out; you need to be safe and careful, obviously, but it could be something quite simple. Best, Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch rupture
R Riley
skn69 Riley, One word: Girlfriends. You are a fantastic guy and I hand it to you for being so loving and supportive but she is going to need her female support group too. Sisters, girlfriends, mom or aunt or whoever it is that she calls when she has a problem with you. (yup, us girls call each other when the guys get on our nerves)...I love my hubby but no matter how often he rassured me or showed that he desired or cared for me the bottom line was that I needed my sisterhood. Yes, to group... [ more ]
L.DL Riley, You are truly an amazing man for being there for your girlfriend, I commend you for that. This is gonna be a difficult journey for both of you to go through. It's nice of you to be as well informed about her illness as you can, that will help you to better understand what she is going through medically, but as for the emotional part, find out if there are any group therapies in your community that you can both attend.Ask at the hospital or the ostomy department they may be able to... [ more ]
L.DL Riley, You are truly an amazing man for being there for your girlfriend, I commend you for that. This is gonna be a difficult journey for both of you to go through. It's nice of you to be as well informed about her illness as you can, that will help you to better understand what she is going through medically, but as for the emotional part, find out if there are any group therapies in your community that you can both attend.Ask at the hospital or the ostomy department they may be able to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch advancement surgery
G Graemek
Graemek Thanks a mill Jan! I appreciate all the bother of reading my posts. I looked into it and the new surgeon seems to be very highly recommended and has just returned from a stint at the Cleveland clinic, which I've read is the sort of Mecca of j pouch surgery? There is also the option of traveling to London which is covered under HSE(Irish healthcare) if the need should arise. I'm okay with a temporary ileostomy, had it for a year before and once it's healed its do able. A new problem has... [ more ]
Jan Dollar As lovely as it is to sit around watching Game of Thrones, I am sure you would like to be accomplishing a few things. I agree with you that it seems like there is a bit of a rush to surgery without a full evaluation to see what is happening in there. Sure, you now know there is a functional/structural problem and that will need repair. But, it would also be useful to know if there are other challenges going on. It would seem to be a real shame to go forward with surgery only to find out... [ more ]
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J-Pouch ForumsPouchitis
pouchitis / cuffitis or both?
N Nela
Jan Dollar Just like UC, cuffitis may need maintenance treatment. You may need long term Salofalk suupositories, or talk to your doctors to switch to oral for maintenance. That is what I did when I got tired of doing suppositories all the time. Now I just need them for the occasional rare flare. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain 10 weeks post pouch surgery
A AliceMay
Kashi That is very similar to what I'm experiencing. I did not have this pain as early on as you. Also, I don't seem to notice it as more - or less - after any certain food. [ more ]
wsh6745 What kind of spasms are you talking about? Is this common? I have been getting severe cramps recently and it doesn't seem to depend on what I eat. For example, today I only had an Ensure shake (Ensure, banana, a little peanut butter, fiber and ice all blended up). I have had this pain episode about 4-5 times today but sometimes it is 10-15 times in one day. It is a severe cramping type pain that almost brings me to tears. It is really sharp, feels like it is all around my stomach, it lasts... [ more ]
Jan Dollar It is not uncommon for digestive symptoms to erupt as you advance your diet. Mostly, it is by adding more adventurous foods too rapidly or increasing your portions too much. Basically, if you eat more than you can readily digest, the bacteria work on it, causing gas and churning in the gut. You can try scaling back on your diet (carbohydrates in particular). Another thing to try is digestive enzymes, as some people get good results with them. Probiotics may help balance your gut bacteria,... [ more ]
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J-Pouch ForumsGeneral Discussion
high mucous output
N naz
Pluot It's normal. I had a three stage procedure as well, but didn't have the mucous fistula (the top of the sigmoid was just tacked inside my body), and I had a LOT of mucus output through my anus before the second surgery. My rectum and sigmoid were still flaring pretty badly so the mucus was sometimes a bit bloody and sometimes urgent. Removing the rest of the colon sometimes resolves all of the inflammation, but often it does not. I also had low grade fevers on and off after step 1 because of... [ more ]
naz Th problem is the mucous is coming from the remaining part of my colon. I forgot to mention, since most of the forum members are American, they're used to two stage surgeries; where the first surgery is a total colectomy . I've had a sub total colectomy, so i have two stomas, an ileostomy on my left, and a mucous fistula on my right which is for my colon. [ more ]
CeeeeCeeee I'd look at this overproduction of mucous as a positive occurrence. At least it will be after you are totally connected. You probably won't notice the mucous after takedown but it will help move the effluent smoothly out of you. Without it, you would feel "stuck". The same thing happened to me prior to takedown. It was easier for me to accept wearing a sanitary pad since I'm female. If I were male, I'd do it anyway! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Internal Pouch - Low Iron + Supplements
A Ashman
Ashman Been using this Sytron Elixir for a few days now. So far no issues. It does leave an odd taste in my mouth but i suppose that's normal for all liquid iron supplements. Also i am starting to feel better now i'm taking the Metronizadole. Just so you know, the Sytron is Sodium Feredetate. [ more ]
Ashman So i saw my doctor today. I was given metronidazole and another iron supplement to try, this time it's Sytron Elixir. I've tried Ferrous Gluconate, Sulphate, Fumerate in both tablet and liquid form. Nothing works, it all affects me the same. [ more ]
mgmt10 I have on going anemia issues. However I'm not bleeding...it's more of an absorption problem. Oral iron doesn't help me plus its harsh for my stomach. Iron infusions seem to be the only thing that helps me. I see a hematologist for this. [ more ]
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J-Pouch ForumsGeneral Discussion
Bowel Obstruction
P phonix2g
GinLyn You've named the main things, drinking a lot and chewing your food well. I've always also found walking, walking, walking and more walking to help keep my digestive tract moving. Some people swear by specialized massage meant to ease the tightness of adhesions, but other people say it doesn't do anything. I haven't investigated it much myself, but it's something you could look into. Best, Gin [ more ]
DeathStalker I had a nasty obstruction between the initial surgery and take-down. I also spent about a week in the hospital where they tested me and couldn't find anything. It hurt beyond words. I was throwing up the entire day(s) after being given dilaudid. Eventually, it passed. When they did my takedown surgery, they finally found the obstruction right where my stoma was. They cut out the scarred section and I've been much better ever since. I would recommend two things. Gentle tapping on the area... [ more ]
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J-Pouch ForumsHelp! Need advice now!
No Control of Bowels 6 months after takedown!
K Ki
Ki Surgery for the ostomy is scheduled for Thursday here in Philadelphia. The tailbone pain is being controlled by the Belladonna Suppositories Dr. Shen prescribed. My question for anyone is...should the tailbone pain go away once he has the bag? No one is even sure why it is there? [ more ]
Jan Dollar They will do the ostomy if indicated, and it may well be at this point. I wonder if there was a perforation or something, as this sounds pretty serious. But, the good news is that he is in the best possible place. Sending all the good luck I can muster! Jan [ more ]
Bebekspor I hope they get him some relief ASAP! [ more ]
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J-Pouch ForumsGeneral Discussion
humira levels and dosing
BM boy's mom
Jan Dollar I believe that particularly in pediatric patients, you want to be sure that dosing is correct, especially if you expect him to be on this drug in the long term. How quickly this drug is metabolized varies from person to person. It stays in the system for several weeks, so you don't want overlapping doses any more frequent than necessary. Antibody formation is less of an issue with Humira compared to Remicade. I know for my Simponi, my rheumatologist told me that if I was doing well, to try... [ more ]
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J-Pouch ForumsGeneral Discussion
Problems at Night.
MysticobraMysticobra
DeathStalker Ditto what Jan said. When I had my J-Pouch surgeries I had this false notion that I would recover in a matter of days. We're talking months here. Someone on this forum told me to measure improvement in two week increments and they were right on with that advice. [ more ]
CeeeeCeeee Early on I just decided to be prepared every night. I used a plastic type underpants I bought through a medical supply company and had a hospital quality bed pad under me. Sleep was more important to me than having to deal with messy sheets AND messy me throughout the night. My effluent didn't smell and the underwear kept it all contained until I wanted to deal with it. My skin didn't suffer at all and my skin reacts to everything! Over 10 years have passed and it's been at least 8 or 9... [ more ]
Jan Dollar Don't expect immediate spectacular results. Give it a week or so. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions
M MaryL
AllyKat I had adhesion surgery laproscopically. After 2 weeks I was doing pretty good. I did not gave sera film. My surgeon does not believe in it. I still get sometimes small blockages that resolve quickly on occasion and in 4 years only 1 that required a trip to the ER. Prior to this I would be in the ER every few weeks. It also got to a point I could not eat. Good luck! with all we have been thru this was not too bad. [ more ]
Jan Dollar The most common one is Seprafilm, and it is sort of like plastic wrap. It dissolves after a few weeks. Adhesions form withing the first two weeks or so. Jan [ more ]
GinLyn No worries! If/when they operate to cut the adhesions, be sure to ask them about the anti-adhesion liquid which is sometimes used after these surgeries. Basically it is just kind of sprayed around and helps prevent further adhesion development. I can't remember what it is called, but they should know what you're talking about. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
presacral abscess or something else?
D DeathStalker
DeathStalker Thanks Jan. I got an appointment set up for Monday with my surgeon. Hopefully, we can sort this out. [ more ]
Jan Dollar A presacral abscess is not something you can feel from the outside. It is deep inside the pelvic cavity. What you describe sounds more like a perianal or perirectal abscess. Try doing a Google search of those terms and see if the descriptions are similar to yours. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
abdominal & stoma pain: new
GinLynGinLyn
GinLyn Yikes, I hadn't even considered that. Thlbpt. I have an appointment this week and will let her know. Thanks! Gin [ more ]
Jan Dollar It sounds like tightening adhesions, maybe even a bit of a stricture at the stoma. What does your surgeon say, or does he know yet? Since this is a persistent problem, you should inform him. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Newb here...
P PJ2682
PJ2682 Thanks for the info everyone. I had my consultation. The first surgery is scheduled for April 11th. I'll keep you up-to-date as to how things are going. [ more ]
Bebekspor Sounds like my story too! I got the flare from hell February of 2013. Did rounds and rounds of prednisone (which always got me into remission within days in the past). Didn't work. In May I started Humira and Imuran. Didn't work. Started remicade, did the infusions 4 times, although by the third time of it not working everyone pretty much knew it wouldn't work. I was incontinent, had little appetite, was constantly fatigued, had anemia (did iron infusions at the hospital), stayed at home... [ more ]
wsh6745 Hi P.J. My name is Wendy. My story is also very very similar to yours. I was diagnosed in 2008-2009 and also tried several drugs. At the end, I was on Humira, Imuran, prednisone (high doses), Ambien (to sleep due to the prednisone) and Cortifoam. I have been on prednisone so often that three years ago I was diagnosed with osteopenia due to bone loss. Last year, I had another bone density scan and had lost another 10% of my bone density. In addition, I started having severe hip pain, blurred... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
draining seton
J jennym2
n/a I was told by every dr. I've seen, that having sex with a seton will not damage my RV fistula - could involve pain, but will not damage anything. I would suspect that the blood is coming from the "wound" that the seton emerges from - caused by pulling, tugging, etc. I would watch it for a day or 2 and see if it continues. If it does continue or get heavier, you should let your dr. know. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pains during period
N Nikoline
GinLyn Is the pain from menstrual cramps or something different? Don't think it's nothing; I dealt with this for YEARS until my doctor here sent me to a specialist to have it taken care of. They "burnt" the lining of my uterus with radio waves and no more pain also no more HEAVY periods. Have you seen a gyno or only a family doc? Gin [ more ]
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J-Pouch ForumsGeneral Discussion
After 1st surgery for 3 step Jpouch surgery.
G Goody21
GinLyn I even eat popcorn upon occasion now! Trial and error. Gin [ more ]
ActiveUC'er No fruits and vegetables for six weeks. Exceptions are bananas, applesauce, canned pears or peaches, mushy broccoli, mushy beets. Also no shellfish as that increases a blockage risk. After six weeks, reintroduce everything slowly. I have no long-term restrictions but I've heard that mushrooms can be difficult. Get 1.5g of protein for every kg of body weight for awhile after surgery to help healing. At least, these have always been my instructions. [ more ]
ISeeUC I avoided nuts 'n' fresh veggies the first six weeks after I received both of my ileostomies, just to play it safe. I had no blockages the nine months I had a temp ileostomy and have had only one minor blockage in the year I've had the permanent ileostomy, thanks to an orange I failed to chew well (bad me). Nurses advised me after both surgeries to skip nuts and fresh veggies forever. I'm glad I ignored their advice! [ more ]
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J-Pouch ForumsGeneral Discussion
fifths disease
K kk
GinLyn Fifths disease is generally short-lived, although it can be quite dangerous for fetuses. Usually a childhood thing and not too much of a problem. Unless there is something different going on? Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
GI or Colon rectal surgeon
K kk
Jan Dollar True and false. True that a GI does not make j-pouches. But false that he cannot know enough to treat them. A GI is trained in medical management and might be more apt to consider a variety of treatments. It all depends on how well the surgeon and/or the GI stay up to date. It seems rather arrogant of a surgeon to assume he is the only qualified provider. That said, yes, many GIs are not well informed about j-pouches. Why is that? Also, many surgeons do not seem interested in maintenance... [ more ]
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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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