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J-Pouch ForumsK-Pouch Korner
K-pouch/BCIR stoma
K ke353
ke353 Thanks for the responses. I was thinking there wasn't really a difference between the two. I'm looking into the procedure and I'm trying to get all the information I can so I can make the best decision possible! [ more ]
skn69 Mine looks like a tiny, pink bellybutton and I keep it covered with a folded Kleenex or a band-aid that is flesh-tone. I don,t think that in the long run that it really matters because it is always covered and it does not effect function...as long as the tube goes in without pain or discomfort and you are comfortable with it. As for the pouch, they are all the same, it is in fact the valve that differs in the fact that the Bcir ones have a living collar and the k pouches originally didn't... [ more ]
vanessavy Valve is what is different. I have never seen a continent ileo that didn't have a slit but that is just me! [ more ]
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J-Pouch ForumsGeneral Discussion
complicated surgery needed... Dr Dietz
LU LisaTX USA
Former Member Lisa, I have not had your complications but I feel like I know Dr Dietz. He performed a subtotal colectomy with ileorectal anastomosis on me in July 2005 for colon cancer at age 29. He operated on me on a day he had set originally for academic issues. He is an excellent surgeon; realistic, yet optimistic. Excellent bedside manner. Recommended which surgery he would perform with phrases like "if it was someone in my family, i would want .." He saved my life and I fully trust his surgical... [ more ]
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J-Pouch ForumsGeneral Discussion
HYDRATION!!!
J Judy1
BrittanyKay Great ideas everyone! Thanks [ more ]
Tommy pb I spike my water with nuun. It's a tablet that u drop into your water for electrolytes. Most vitamin nutrition stores have it. Works very well for just basic hydration or work outs. [ more ]
vanessavy Ice tea actually dehydrates if it has caffeine. Have to double up on water if you do tea, same with coffee. Just wanted to share this. FIT TIP: Make your own vitamin water. Add fruits instead of sugar for a natural sweetener for your H20. Cut the fruit into paper-thin slices or small chunks. Combine ingredients with water. Refrigerate 4-6 hours and serve over ice. So delicious and very refreshing! [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain/cramping Don,t know if anyone can help !
FM Former Member
Former Member Thank you for all your thoughts have tried eating more time a day and eating less it seems that it dose not matter when i eat it just stays there till it builds up to a point then i start getting the pain again,I now get pain in my lower part off my tummy. i just think things are getting worse and now been told have to go on waiting list to see a different consaltant make me so cross. [ more ]
liz11 try eating less food at a time. So instead of three meals a day.. try eating 5 meals a day. Little bits often rather than full meals. See if that helps things. [ more ]
Former Member With me when I get cramp/pains it is usually one of two things. Gas not wanting to pass or its some-type of blockage. I watch what i eat and chew longer to help avoid a blockage. [ more ]
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J-Pouch ForumsGeneral Discussion
Post takedown
C Cate87
mgmt10 I had gas cramping for a few weeks after takedown. It was more bothersome than painful. Being that you were just released from the hospital for an obstruction I would say this is normal. As long as you aren't in any large amount of pain. If that happens, then you should call your doc. Feel better soon. [ more ]
Former Member I havent had my takedown yet but I just wanted to say I hope you feel better soon. I am sure someone will be along shortly with some support. I am sure your thrilled to be home! Good Luck!! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Questions about pregnancy and Jpouch
M mjhdpn
Clicky So sorry to hear about this. I know how frustrating it can be, especially after dealing with infertility. Sending you lots of prayers for a positive outcome. [ more ]
mjhdpn Thank you all so much for your responses. Unfortunately my pregnancy is most likely not viable. At my 6 week scan saw a ges sac, but no fetal pole or yolk sac... same thing at my 7 week scan. I go back on 2 July (9 week point) and if we see nothing docs say it was a blighted ovum.. I am keeping my fingers crossed and praying. Thank you... [ more ]
Former Member I had 2 pregnancies with jpouch. No bed rest & normal vaginal deliveries, not high risk. I too had more bms towards the end due to all the pressure. During months 5-6 I had to eat much smaller meals because the baby was pushing through the belly button area/stoma scar area and I felt nauseous if I ate too much. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Is a fistula a one way street
D dawn58
Jan Dollar It can go either way. It all depends on the pressure gradient, and it flows from high to low. Gravity matters, as does the pressure within each organ at either end of the fistula. If the fistula communicates with the skin, that is where the pressure is the lowest, so it always leaks out of the skin, instead of the other way. I doubt one is better than another. I guess the worst is if your bladder or urethra connects to your pouch, as that leads to chronic urinary tract infections. There is... [ more ]
Lorsall I have been wondering this exact same thing, and was wondering if it is possible to have a fistula and not know it- no pain or anything. [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking pouch
A athena
Jan Dollar Did they leave the drain in place for a prolonged period, or just at the time of the CT guided drainage. I had an abscess due to a leak, and had a drain placed under CT guideance and left in place for a month, with weekly CTs to check for collapse of the abscess pocket. The drain was not removed until the pocket was fully collapsed. I did not need follow up antibiotics and the leak did not recur. Apparently, the leak occurred early on and sealed off, but leaked enough to cause a huge abscess... [ more ]
Catinthehat I had an infected abscess from a leak after surgery (total colectomy) that was confirmed by CT scans and cultures. I had to have heavy duty antibiotics via a picc line for 8 weeks. I wore a portable unit during this time and was able to be at home and work some. I don't believe it will go away on its own, but just my opinion. [ more ]
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J-Pouch ForumsGeneral Discussion
B & O Suppositories
I itsnotsherry
Becky G A few years ago I helped a friend track these down. Paddock Labs is the only company that makes them (Belladona and Opium) and they periodically suspend production. (I was told because they can't always get the raw materials..i.e. opium). You might try one of the large national pharmacy chains(Walgreens, CVS) and ask if they can track it down for you. If the local pharmacist isn't being all that helpful, ask for the name of the regional pharmacy manager. [ more ]
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J-Pouch ForumsGeneral Discussion
Obstruction gone!
C Cate87
georgiegirl hi I had the same problem both before and after takedown. Now that you have had a bowel obstruction you will know what your symptoms are as they develop - for me it is very loud bowel sounds and bloating and lack of output. After that it moves onto severe pain and nausea. As soon as you start feeling symptoms stop solid foods, increase fluids and take grape juice. (I keep some on hand at all times). I had a partial obstruction the day after I came home from the hospital when I was admitted... [ more ]
liz11 excellent cate. The thing to remember at home though... little little meals-but frequently eat slowly, chew a lot, and soft squishy foods - things you can cut with a forkm or for that matter don't need cutting at all- for a while. Keep walking and moving at home, especially after you eat. You are on your way! [ more ]
Lizzie Knott Just had the same issue, but had surgery to remove the scar tissue causing it. I think eating small frequent meals and low fiber is a good idea. That is what my dr told me. Keep hydrated too. Best of luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
complicated surgery needed... Dr Deitz
LU LisaTX USA
vanessavy If you had a BCIR then had it removed, I am not sure why you did though? Then the kpouch is pretty much the same thing... I believe you have to have at least 12 feet of small bowel left to make a continent ileo. CC is the best though so go and see. I have had surgeons tell me they could not do this and that when I was consulting. then I went to one that was similar to perhaps yours you are considering, suggested he could do certain surgeries and that he didn't take the word of anyone so he... [ more ]
liz11 I might suggest you invest in a trip to Cleveland to meet Dr. Dietz in person and to review your situation. My surgeon at CC (who is not Dr. Dietz) is very conservative but also extremely experienced. He is frank about the pros and cons of each and every situation he has dealt with with me. I suspect these characteristics are common with many of the CC surgeons. Many of the CC colorectal surgeons deal with very complicated IBD and jpouch issues from araound that world that other doctors have... [ more ]
Jan Dollar I never heard of a frozen abdomen, and I do quite a bit of reading. But, from what you describe, it sounds like your abdominal organs are all "tied up" from adhesions. So much so, further surgery could damage your remaining organs when they try to release all those adhesions. This sort of surgery would require the skill of someone quite experienced with complex adhesion release. My understanding is that the surgeons at the Cleveland Clinic colorectal department have pretty vast experience... [ more ]
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J-Pouch ForumsGeneral Discussion
Dear bowels, please wake up
minnieminnie
vanessavy I wish my bowels slowed and didn't move around so much. Opposite issue! My small bowel barium xray took 8 minutes to go through to the leg bag I wore for it. [ more ]
liz11 Minnie- make yourself a walking chart. try to get up to 6-9 laps 4 times a day. You CANNOT walk too much in your situation. Get those bowels moving! [ more ]
Lizzie Knott They have a mind of their own. It does take time. Keep up with the walking. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Chasing the wrong problem for six months, possible PCOS
KelseyHey2308KelseyHey2308
liz11 kelsey- Your doctor can mail you a prescription for controlled substances and then you can hand carry that prescription to your pharmacy to get filled. And certain ones, like vicodin can be called in from the doctor to the pharmacy. Heavier dutier ones like percocet have to have an actual physical prescription. So instead of having to drive, ask your doctor to mail the prescription to your house. Try to get oustide and sit or lie in the sunshine for awhile. It might help you feel a bit better. [ more ]
TE Marie The reason you have to personally pick up the prescription as most states do not allow doctors to call in controlled substances, like Vicodin and such. Once you have that script filled the doctor's office can call in more refills without a hand written script. Can they mail it to you or the pharmacy? Keep following up on this so they will feel your pain! Good Luck! [ more ]
rockandroller I agree - why aren't they putting you on prog to regulate your hormones? So sorry to hear you are dealing with this. [ more ]
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J-Pouch ForumsGeneral Discussion
Home from takedown..lots of questions??
RM Randi M
Lizzie Knott I was always told coke for dehydration. I would expect more output while you are getting used to the pouch. It gets better. It is normal to feel depressed. You are going through a lot. I lived on applesauce, yogurt, and smoothies for a few weeks after takedown. Best of luck and hang in there. [ more ]
kathy smith 1. What is best for hydration? Read on here water isn't good Electrolyte replacement products are good. I like Vitalyte it has a very mild flavor and the citrus has no added color. It really works well. But you can even make your own. Google electrolyte replacement drink recipes. Water is certainly okay but the problem arises when one is drinking a whole bunch of water. In very rare instances it can cause water intoxication when the balance of electrolytes is pushed beyond safe limits. It... [ more ]
Subsky 1)In my mind nothing beats hydration like water. It's all the body needs fluid wise really, drink as much as you can since it also flushes out your body. Try mixing a gatorade half with water, makes it less sugary and you will get the added electrolytes which you could use right now. 2)Well since you had that ileum I'd say stay away from anything to epic for a little while. Simple foods that have agreed with you in the past would be great. Bananas, soup, yogurt, potatoes, marianne has them... [ more ]
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J-Pouch ForumsGeneral Discussion
emergency surgery
Lizzie KnottLizzie Knott
mgmt10 Thanks for the explanation Jan. Elizabeth, Hope you feel better soon! [ more ]
Jan Dollar Couldn't hurt! No, seriously, activity is the best way to heal more quickly. Make sure to stand up straight too. Jan [ more ]
Lizzie Knott Thanks Jan for the explanations. I am trying to not let it consume my thoughts. I just would like to not let it happen again. I have been up and walking a lot since surgery. I am hoping that movement helps the healing process. [ more ]
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J-Pouch ForumsGeneral Discussion
What was your longest hospital stay?
SpookySpooky
Peachy My longest hospital stay was 1 month. That was for step one of a two-step j pouch surgery. Had tons of complications. [ more ]
beckysmom Longest consecutive time was 5 weeks when my daughter was 7. Then the summer she had her j pouch surgery, from colectomy to take down, was 7 times in and out during those 10 awful weeks. Last surgery was 5/22/12, for a pouch revision, was in and out for 4+ days each time in the past 3 weeks. Home and healing now!!! [ more ]
Cait Again Aaaaaaaaw Kathy, Dan'd be so pleased to hear you call him a strapping young man but the sad truth is that Tom has him well and truly beaten for youth And yes, sadly for Tom he also won the hospital stay record. There were mere days in it I seem to remember, but the title is Tom's. And goodness knows I hope no-one else has to take it from him [ more ]
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J-Pouch ForumsGeneral Discussion
Picc Line installed
R RLC
Subsky They had to put a central line in my neck when I was in the hospital before my colectomy. Had it in there for like 3 weeks, didn't feel very good going in that's for sure. [ more ]
vanessavy I woke up with a central line in after surgery. Was nice to have but made me nervous. [ more ]
Lorsall I am sorry you are having so many complications. They tried to install a PICC for me last September but the veins in my left arm were too small even for a pediatric line, and after 7 failed attempts at the one vein in my right arm that looked almost big enough they found that it was scarred and unusable from a blood clot during my colectomy. So I now have a portacath instead. I am not sure why everyone is saying you can't gain weight on TPN; I was able to discontinue TPN just a couple weeks... [ more ]
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J-Pouch ForumsGeneral Discussion
It's like coming home...
CA Cait Again
kathy smith There have been a number of people here who've waited much longer than that. I think if she'd like to wait longer she should keep up with kegal exercises so those muscles don't get all lazy and such. I think it totally depends on the surgeon and what s/he is comfortable with. But the fact that the surgeon is even mentioning j-pouch construction and takedown all in one is promising. But even more, the fact that the surgeon is making no promises is a good thing. Can you imagine how shocking it... [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3
FM Former Member
LionsPride Sorry, i should have been a little more specific. Pouchitis is caused by a bacterial overgrowth of 'bad' bacteria which causes all the issues. When you take the antibiotics you kill everything, good and bad, in theory at least. Sometimes the bacterial colonies will get lessened to the point where you aren't symptomatic anymore, but are still there. That's why they always tell you with antibiotics to take the full 2 week does to make sure everything is dead. That's what I mean, you want to... [ more ]
Subsky $400 for one month?! Jesus that would be my probiotic budget for the whole year, lol. When they said to clean your gut out first with antibiotics is because pouchitis is caused by a build up of bad bacteria in your pouch, and it gets inflamed. You want to run a course of antibiotics (cipro and flagyl usually) so it wipes out all the bacteria in your gut. That way when you start taking the VSL#3 it's a fresh start and all the bad bacteria are gone. Cause if you are in a middle of a pouchitis... [ more ]
Former Member Hi guys.Subsky $400.00 is for 1 months worth and that is after my Pharmasist,who I went to highschool with,gave me a "deal".Lionspride I don`t understand what you mean by getting myself cleaned out first.Thanks for all the feed back much appreciated.If this doesn`t work I`ll really be up you know what creek!Oh before I forget so if I start this VSL#3 and it does work does that mean I have to take it forever for me to benefit? [ more ]
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J-Pouch ForumsGeneral Discussion
Time of day for taking probiotics.
J ju330
Subsky I just started taking a probiotic for the first time. I did a bunch of research about them before I picked one. I'm taking progressive's HCP70, just started yesterday. It's just a gel cap, with all the probiotic powder within it. They say to take it with food at breakfast and dinner, so the stomach ph is optimal. I like the gel cap idea as well, since it'll open up in the small intestine and keep all the probiotic's away from the stomach acid. [ more ]
ju330 Thanks for the replies. I think that I'll take them tonight before bed and see if there's any difference. Also, what do you all think of time-release capsules? I had another brand of probiotics, but they were time-release so I exchanged them for the one I have now. I mentioned this to someone I work with (small Health Food store), and they said that time-release just means it doesn't release in the stomach, but the small intestine, and that I should be fine taking them. I don't know about... [ more ]
CLeLong I usually do it before bed so they stand the best chance of hanging around and setting up shop. If I do take them at other times, I try to avoid taking them with a big meal or with anything hot nor acidic. [ more ]
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J-Pouch ForumsGeneral Discussion
Will takedown be easier the 2nd time around?
C Colleen2001
Colleen2001 Hi Dawn, Yes, I am having tests done on Tuesday to determine if the repair was a success. I am being cautiously optimistic that my takedown will be sometime in July. Wish me luck! [ more ]
Former Member Sorry,I can't answer your question but i hope you very good. [ more ]
dawn58 Don't they have to make sure the fistula is repaired before they give you a date for takedown? [ more ]
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J-Pouch ForumsGeneral Discussion
Minor set-back
Kline84Kline84
mgmt10 Don't give up on eating ribs all together. Just not a full rack and then sit in the car for a six hour drive! I love spare ribs...made some the other day for our fathers day BBQ. Delish! [ more ]
Kline84 Lol yeah eating the ribs probably wasn't the smartest thing I've done. I guess I just got used to eating whatever I wanted with the ostomy but I was usually up moving around after eating and drinking lots of water. ( anyone who has been through Wyoming knows the stops are few and far between) so I'm sure it was the sitting still in the car for 6 hrs. I had eaten everything including mushrooms before so I didn't think there was much of a risk. I was pretty bummed out when the dr told me no... [ more ]
Subsky Sorry to hear your surgery got pushed back, but I'm sure it was the right choice considering how your insides feel at the moment. Damn ribs eh? I've only had one blockage before, it was right after they let me out after my colectomy, mac and chesse did me in, stayed blocked for a couple days. Woke up in the middle of the night and my bag was literally full to the brim with liquid, the flange and appliance almost ripped off because of all the pressure. It was definitely sore for a few days... [ more ]
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J-Pouch ForumsGeneral Discussion
Hernia repair scheduled
C CLeLong
CLeLong The surgeon wanted to make sure no additional hernias develop along the incisions. He felt doing this was the best route to prevent any future problems. He was confident that it will go well with little risk of bowel complications. I'm usually more comfortable with familiar things. Since I've has PCA several times, I'm more comfortable with it than the epidural. From other people's experiences that I've read, including here, it seems like there is a chance of the epi not working well or at... [ more ]
Breezie I had a hernia repair similar to what you describe, but I didn't have mesh over the entire abdomen, just local to the hernia. It was a really large hernia and the two surgeons I interviewed prior to picking the one I went with both had the same opinion, that there was no doubt that it would be an open surgery. Everything went fine and the repair held up. Of note, I had a later surgery above my colectomy/j-pouch midline scar (unrelated to UC) and I ended up with a huge hernia from that as... [ more ]
Grandonion I don't yet have experience with hernia repair, although that will probably need to be done in the next several months. Regarding pain control, the epidural that I had during and after my pouch construction surgery was an absolute godsend! With the exception of some easily-controlled itching, I had essentially zero discomfort during my entire hospital stay. I'd have one again in a second! Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
EUA today
L liz11
kathy smith I'm so sorry to hear you're having so many complications. I hope this Big House visit is the one that fixes everything right up. kathy [ more ]
n/a So sorry to hear of this newest complication, Liz. 3 months of this roller coaster ride is just too long. Feel better soon! [ more ]
TE Marie I take it as a compliment when the nurses remember me, lol. I don't know when it will end as I'm still having problems. Seems like you almost get one thing taken care of and something else you didn't expect would happen does. Take care - we have not gone through all of this to quit fighting! [ more ]
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J-Pouch ForumsGeneral Discussion
Back in hospital
C Cate87
n/a Darnit, sorry to hear of your obstruction/hospitalization, Cate. Stay tough - will be sending you the most positive vibes. [ more ]
liz11 Sorry to hear you had to get admitted, but it is the best place for you to deal with your problems. As sharon said use this time to relax, watch some trash tv, read some junk magazines, put on some earbuds and listen to some relaxing music. And walk walk walk, it will help get things moving in your system. Sending hapy thoughts your way! [ more ]
Grandonion An NG tube is a real drag, but it sure beats getting opened up again! My doc's anti-obstruction mantra is warn baths, massage and grape juice. Didn't follow his advice with my first obstruction and ended up inpatient. 2 subsequent times, it worked like a charm. Good luck! trevor [ more ]
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J-Pouch ForumsGeneral Discussion
Waiting longer for tankedown?
Uncle PocketsUncle Pockets
liz11 Better to be safe than sorry. A cautious surgeon gives me nice warm fuzzies. I would trust your surgeon on this one. Besides its only two more months. Use this time to focus on getting yourself in the best possible health, eating right, exercising, etc. [ more ]
Jan Dollar I don't know about your risks if you go forward now. However, if your surgeon is against it, it is not a good idea to try to pressure a change against her recommendations. It is sort of like leaving the hospital against medical advice. You are taking over your case in that instance and putting your surgeon in a bind. It is possible she may refuse and that just makes things awkward for the both of you. Worst case scenario, she signs off your case and you have to find a new surgeon. I can... [ more ]
itsnotsherry Uncle Pockets, I too thought I was going for takedown after 3 months, but required further surgery/hospitalizations due to infections. It was put off an entire year. I thought it was forever, but time went by, and I knew then and I know now, the doctor was being cautious, and knows best. It will go quickly. [ more ]
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J-Pouch ForumsGeneral Discussion
Hives
R Ro
Ro oh! you have a really good point! i didnt even think of that.... well, im going to be paying more attention nonetheless, as things progress, and see if i can nail it down. might avoid the ibuprofen for a bit though. thanks a lot for your responses. i really appreciate them. [ more ]
Jan Dollar I usually get them on my legs and torso, but have had them on my face too. It varies. Funny though, I have not had them much since my colectomy, so perhaps the intestinal inflammation "primed" me for them. I don't know if you can rule anything out, as there can be slow or delayed reactions. But I guess most causes by foods are usually pretty quick. depending on your sensitivity. I would even make your headache a suspect, especially if it was a bad one, since pain can stimulate release of... [ more ]
Ro agghh!! so i keep hearing hives are yet another wonderful thing that have little to no explanation. lol. when you get them, do you get them on your face (eyes lips, tongue) at all? and how long does it usually take for them to go away? i definitely hope i can get enough guts to try ibuprofen again, because thats the only thing that works for me for headaches...hives just freak me out so bad, especially when they are on my face.... also, would it be safe to rule out food or drink i had the... [ more ]
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J-Pouch ForumsGeneral Discussion
Positive Results from Remicade?
SubskySubsky
Jan Dollar If it were me, yes, I'd want to discuss the option of Humira over Remicade. But, some docs have their reasons for wanting to do Remicade first, and sometimes they don't want to budge on it. For the insurers, it is pretty much all the same, as the cost for the drug is about the same. But, Remicade also incurs the expense of administration (office visit + IV infusion cost- some of that is passed on to you as copays). I suppose for the docs, that is a plus, because it makes them more money, but... [ more ]
Subsky The funny thing is, quitting smoking was one of the easiest decisions I ever made. I was never a heavy smoker, I probably smoked 3-6 cigarettes a day, for about 5 years. My gf still smokes, but we now have a smoke free house so she goes outside to smoke. I didn't even get any cravings the last 2 weeks, it's great. I'm still coughing up a bit of crap out of my lungs each morning and when I go for a run, which is normal for the first 6 weeks after quitting smoking apparently. It's your lungs... [ more ]
Jan Dollar Enbrel won't work, as it is just for arthritis. Didn't do too much for my arthritis either, since it was IBD related. The only reason I was on it was because I was waiting for Humira approval for spondylitis. Right now, the most important thing you are doing is quitting smoking, paticularly if there is suspicion of Crohn's, since smoking exacerbates Crohn's disease. Plus, as we all know smoking absolutely is linked to increased cancer risk, not to mention heart and lung disease, and many... [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics???
FM Former Member
bratcat I was just about to write what Holly did. I take VSL3 DS too and on the packets it says "for people with ulcerative colitis or ileoanal pouches." I take 1 packet a day with yogurt and I think it does help a bit. I figure, it can't hurt. [ more ]
skn69 May I state the (possibly stupid) but obvious??? If antibiotics work in the small intestine why then wouldn't probiotics? We take the probiotics to regenerate the good bacteria that our constant use of antibiotics has kille/destroyed...They may not be truely necessary on a 24/7 basis 12 months of the year but at least when we are in trouble, feeling like our digestive process has been compromised by meds and when we are feeling 'pouchy' then I personally feel as if they help me...my... [ more ]
Holly M the VSL#3 DS says right on the package for people with ulcerative colitis or ileoanal pouches. I take one packet a day. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil/Imodium Before or After Meals
R Ryeeno
CLeLong Imodium definetly before you eat. At least 1/2 hr before a meal to let it absorb. Fiber usuallu with meals. When I was using the metamucil wafers, I would eat 1 wafer with each meal. Helps bind everything together and absorb liquids. Now I just use 1 tsp of powder mixed with a glass of OJ with breakfast about 4 days a week. I'm 12 years post-op and have found that's what keeps me balanced best. I would think everyone is a little different and has to find their our routine. [ more ]
kathy smith It probably does work better to take the imodium before eating. I think I'd forget so I take 3 imodium in the morning with breakfast and that's also when I eat the wafers. Imodium has a half-life so if you take it daily you'll have a bit that's still effective. If you want to space your imodium and wafers out during the day then yes, take both before meals. kathy [ more ]
Ryeeno Thanks for the responses. When do you take the wafers? Before you eat? [ more ]
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J-Pouch ForumsGeneral Discussion
Can pouchitis cause localized enlarged lymph nodes
FM Former Member
Former Member Thanks Spooky and Jan. I will keep truckin on here in Taiwan to try and get to the bottom of it all. I think I just needed some moral support. My husband is working in Taiwan and needs to let his work know by next week whether we will be going back to the states or if he will stay on for one more year. He is a teacher over here. The Insurance here is great, but I feel like everyone is missing something. I will continue to update. Thanks! Andrea [ more ]
Jan Dollar Enlarged lymph nodes are not terribly specific, other than to highlight the notion that something is afoot in that area. Cancer is very unlikely, unless it was a preop diagnosis. More likely, infection or inflammmation, such as Crohn's. Jan [ more ]
Spooky So sorry you are going through this! It's hard when you're out of the country, but you do need to get answers, even if it may mean cutting your trip short and coming back to the US. The first thing that came to mind reading your post was perhaps an abcess, despite the doctors ruling it out. Perhaps it will be clearer on the MRI. I think you need to have that first and go from there. Keep us posted! [ more ]
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J-Pouch ForumsGeneral Discussion
Catscan!
C Cate87
mgmt10 Yikes sorry you are dealing with this. I had the 6 month bloated pregnant look but it was right after takdown when I got home from the hospital. It lasted about a week and then it went away when things started calming down. Hope it's an easy fix. Let us know how your ct scan results turn out. [ more ]
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J-Pouch ForumsGeneral Discussion
Still in hospital - discouraged.
minnieminnie
liz11 Patience patience patience. You just had a nice beating done to your body. It takes time for it to get back to itself. Don't be eating solid foods until you can handle the good stuff like jello and broth! If you can try - walk some. Walking will help get things moving in the right direction. good luck. [ more ]
Cate87 I had takedown 5/31 and I felt sick to my stomach. They had me on zofran as well. It will get better. My bowels had been sleeping for over a year. I'm at home now but they wanted to re-admit me into the hospital because I just had an x-ray done and my intestines are twice the size they should be and I'm extremely bloated so something wrong is going on. I have to get a catscan tomorrow. I'm on 2 antibiotics. I'm going to the bathroom about 6 times a day. That seems to be going fine. I'm sorry... [ more ]
Holly M I never wanted the dreaded NG tube either, but I have to admit I felt so much better when all that bile was sucked out of me! I had mine for 24 hrs , it was uncomfortable feeling in my throat but well worth it in the long run. Good luck, my take down was April 18th, and today is my first full day back at work, it will get better. ps I was in the hospital for 2 weeks after takedown. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
How to find a private surgeon?
FM Former Member
Former Member thanks everyone so much for your replies... However I think flying to the states would be a bit much LOL!! I had EUA with my colorectal surgeon pretty pronto in the end, turns out I have deep and severe fissures and lots of ulcerations...apparently I have a very crohns looking bottom. So I'm nervously waiting for my biopsy results to come through hopefully on Wednesday. But I have so many problems I'm going back to the stoma...asap if I get my way. The jpouch things has not worked for me and... [ more ]
Jan Dollar Gee, how about the Mayo Clinic? They are supposed to be pretty good there. Jan [ more ]
KelseyHey2308 Oh I'm sorry I meant if anyone had heard of any in Minnesota. Good luck with your search LittleRoo. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Can stress cause more liquid output?
FM Former Member
kathy smith Yeah, so it could be a multitude of different things but if you're basically doing fine and not getting worse then you can probably wait until your return home. It definitely could be stress. It could be just the different bacteria there. It could be the food. It could be pouchitis. Did you happen to bring any antibiotics with you? You could try them and see if that helps. Regarding drinking water - if you're drinking only water and lots of it you might be having the opposite of rehydration. [ more ]
Former Member Thanks for the tips. I should have been clearer in my first note. The argument/stress creator happened about a week ago. From then until yesterday morning, my frequency increased from 8-10 times a day to about 15-20. However, my stool was still sorta solid. But, yesterday morning, it went all liquid...clear or yellow. This morning, its still liquid but changing back to "poop color". I've never had pouchitis, so I'm not sure when to say when and go to the doctor. Oh, did I mention I'm not in... [ more ]
jeane I have been under an incredible amount of stress lately with my 18 year old daughter who just graduated high school and I can speak to this in that I have been having pouch problems also with increased pouchitis activity and I am certain it is due to all the stress I have been under the last several months. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Bleeding from pouch
M mel82
kathy smith Excellent! [ more ]
mel82 Thanks i have spoke to my doctor, they have put me on antibiotics and guna have me in to have a look inside my pouch. thanks for reply :-) [ more ]
kathy smith It could be something that's going around or it could be cuffitis. You should probably give your doctor/consultant a phonecall and see what s/he has to say about it. If it's cuffitis it would be treated with basically the same drugs used for ulcerative colitis (because it's UC in the retained cuff). Could you have a blockage? kathy [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Milk fats may alter gut bacteria causing bowel diseases
FM Former Member
Eric C. Stop drinking dairy - it's not natural to do so. There's not an animal on the planet that's in their adult time frame that is drinking milk, other then humans. There's many other source of calcium, that are better for your body. Further, there's so many alternative sources of milk such as hemp milk, almond milk that actually are good for your body, and taste way better too. The milk that is produced today, isn't good for anyone... [ more ]
Old Mike,Glenns Dad I have the complete paper,basically all they found so far to cause the problem was MF. But the stuff they used in the diet is a highly reifined anhydrous milf fat,lard did not cause the problem. But this highly refined stuff did. This seems to be a trigger,and may not cure you if you stopped all dairy. But there is evedience from Dr. Truelove in 1961 that stopping milk will induce remission in some people ,especially if on pred. You might try and go off of all dairy/eggs/butter and any foods... [ more ]
dew That's why you only use raw milk from haelthy organic grass fed only cow's. Best thing i ever did for my gut. [ more ]
See all 3 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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