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J-Pouch ForumsGeneral Discussion
Spooky??
CTBarristerCTBarrister
Spooky Jan, I had actually fixed my notifications previously, when we first became aware of this, but for some reason I still didn't get notification of CBarrister's PM. I've just gone back and updated my settings again in case I did something wrong the first time (I realize now that I may not have hit the "update" button last time). Hopefully it works this time. [ more ]
CTBarrister I had not included replies and since Spooky replied to my PMs, that may have been why I did not get her replies. I have now checked off the "include replies" box. [ more ]
Jan Dollar When you checked your notifications, did you make sure to check "include replies" on the email notification? If not, you would not be notified if someone replied to you. My notifications are working. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Back from first pouchoscopy
N NewShinyCD
jeane My rectsl cuff often looks similar to your pics. My inflammation is chronic in tbe cuff even when on rectal meds. Remember, many of us often have some level of inflammation in our pouch even if asymptomatic. At my last scope they found two small ulcers and no visible pouchitis ..go figure. The meds should help clear this up. I take cipro often, on and off since my takedown two years ago.... not happy about it but it beats the alternative. Good luck and feel better. [ more ]
NewShinyCD Lol, yea I'm not sure why I warned about the pictures. Anyway, I was on iron supplements for a month before the scope. I had a second blood test last week and I'm no longer iron anemic. Hopefully these antibiotics will get rid of the pouchitis. [ more ]
phonix2g Do they have you on iron supplements? I don't think you have to worry about this group being squeamish with anything as we all have been through and seen it all. [ more ]
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J-Pouch ForumsGeneral Discussion
Released from Surgeon
ceewceew
TE Marie Congratulations ceew. I love to golf so know how great that must have felt to come through all you have and to be out there again! Same to you Mike, fantastic and no butt burn too! [ more ]
JeffDC It is a great day to be fired from your GI or surgeon because you are doing so well. Glad you got fired. [ more ]
ceew Judy1, that is a very good thought. I am a winner. Thank you Mike H, I'm happy to know you are doing so well. Fishing? I could do that too [ more ]
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J-Pouch ForumsGeneral Discussion
How long to exercise? So tired!
Stephaniesays91Stephaniesays91
Stephaniesays91 Thanks for all the advice! I'm 22 and am impatient waitin to get my life back but I think it's best taking it slow! I'm just excited to get back into tight dresses and skinny jeans! Haha all in time tho! [ more ]
phonix2g The problem is they give a time period that is not average for every person. There can not be a specific time frame given due to many factors such as age, prior health issues, etc. You have to just trust and listen to your body I retract my statement to seek advice from a professional due to the reasons I've given. We are all different in a lot of ways. I am a 30 year old male and was always healthy and 6 months post takedown I wouldn't risk doing crunches yet. Just go slow and know when to... [ more ]
Salmak When I was in hospital last week the physio that came and saw me said pretty much anything after 6 weeks. [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation under anesthesia
P phonix2g
phonix2g Yeah I'm pretty sure if men had to give birth that would be the cause of the human demise ha ha. Most of us men are really big wusses when it comes to pain. Giving birth twice without any pain meds WOW you are a tough cookie. Thank God we get the easy part. [ more ]
mgmt10 Glad it went well and all looks good. I didn't ask for sedation because my surgeon is an hour away and I just wanted to get there and home and not have to bother anyone for a ride. I have a high pain tolerance (gave birth twice with no drugs ) so I didn't mind. It wasn't fun but at least it was quick! [ more ]
phonix2g Thanks Marianne. Yeah the Dr. explained almost exactly how you did about the scar tissue. I don't mind if that is what has to be done to get things working properly. You are definitely much braver than I am getting it done in the office. After he gave me the option of anesthesia it was an easy decision. I'm not afraid as a man to admit I'm a big baby when it comes to stuff like that. I had the procedure done around 1pm and happy to report everything when smoothly. No sign of pouchitis,... [ more ]
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J-Pouch ForumsGeneral Discussion
Cautiously ECSTATIC! Dr. Shen needle-knife sinusotomy
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Hi, guys. One week from the NKS procedure with Dr. Shen and I feel pretty good. I am still taking precautionary antibiotics (Tinidazole) for another week yet. I'm slowly getting energy back and feeling somewhat human. Will continue to update when I can. [ more ]
jeane Good for you. Please keep us posted of your progress. I really hope this helps. I never had the barium...only the MRI which showed nothing but my symptoms have been pretty unbearable since day one. I have had several manual dilations with chronic cuffitus... Always pain in my back end. I have gotten used to it unfortunately but I know it's not the way it should be [ more ]
Troy Jeane, never had a takedown. one step done in 1999. had sporadic pouchitis every couple of years but this past spring had worst pouchitis ever. i am guessing that the sinus tract may have had something to do with it. not sure what CRE is but it was a balloon dilation that was done. i am feeling much better. still not there though. When i first saw Dr Shen last month he said there were two examinations that he would perform to see pouch. the first was a barium enema with photos. he called... [ more ]
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J-Pouch ForumsGeneral Discussion
FUTURE OF THIS SITE ???
PouchomarxPouchomarx
Manchester Jan Thanks for the update. You are quite right, hosting for this site should be in the region of £5 ($8) per month. It might be worth swapping out the engine and replacing it with a more environmentally friendly PHP version rather than this javascript version. Bill, please don't take this as a criticism, this site has served me and many others so very well and it works perfectly. It's just a thought that if the site is going to move then it might be a good time to change it. I'm glad to help... [ more ]
Pouchomarx apparently its not a huge deal to him regarding the costs or we would have moved forward already. its been months since this was brought up. I understand hes busy but why keep losing money on this site, lets get moving.. [ more ]
Jan Dollar It is not the web design so much, but the maintenance cost that is eating him up. This one has outrageous costs if you go over the page view limits. I did give him information on some reasonable web hosting companies. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
lets say you go on a car trip..how soon do you take immodium?
dgtracydgtracy
Manchester In July of this year myself and three friends embarked on a charity event to raise money for Crohns and Colitis UK. We drove across 12 countries in 7 days. 3500 miles in total. I took 4 immodium and 2 codeine each morning which ensured I only used the bathroom once until around 6 PM. [ more ]
Jan Dollar First of all, be sure you know how YOU respond to Imodium, since some experience little effect, while others get completely constipated from a single pill! So, taking a survey won't help you there. If you already are accustomed to it, then anytime within a few hours before you leave is fine. It begins to have an effect within 30 minutes or so, peaks around 4-5 hours, and still has an effect 24 hours later. I usually take extra while traveling, mostly to be sure I don't have any panicky... [ more ]
mgmt10 I don't use Imodium so I cant answer that but I just wanted to chime in and say I have to agree with Sue out of experience with this myself. Don't think about it so much....just let it be. Because it sounds like you have a nicely behaved j pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
goto link for affordable health care
vanessavyvanessavy
Scott F About the only thing the health insurance exchanges have in common with Medicaid is "coverage." In any case, there will be an exchange of some sort available in every state, even the states that are trying to keep it from working. [ more ]
vanessavy Well it pretty much is just Medicaid but extended. Florida for one doesn't participate in it. [ more ]
Scott F Even if the state chose not to participate the federal program will handle the marketplace for those residents. The big gap will be in the states that chose to decline Medicaid expansion. [ more ]
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J-Pouch ForumsGeneral Discussion
Success story
J jbear
hfc I survived my half ironman (1.2 mile swim, 53 mile bike, 13.1 mile run) two days ago, finished in 6 hours 16 mins on a beautiful fall day, sunny, a bit windy, 70 degrees in Richmond VA. I so far have not gotten Giardia from swimming in the James River. Next month off to New Zealand for 3 weeks vacation with wife (no kids, last one off to UVA in August). Will do a 26 mile trail run there. June is Comrades 56 mile run in South Africa. Don't let UC or a J pouch stop you from doing some... [ more ]
hfc Congratulations. Keep running! I am 9 years out, 54 now, and have signed up for a training program to do a 1/2 iron man triathlon this fall. Also will be doing a 50 mile ultra run in New Zealand in October. [ more ]
Holly M JG & Jbear you both are an inspiration that is for sure. thanks for checking in and updating us on how you are doing. I am one year out from takedown and although I haven't done anything close to what you have accomplished I too feel like a success story. For me it is because I am finally off all meds now except my daily probiotic. I thought for sure I would never be able to function without cipro or flagyl. (hopefully I am not jinxing myself) [ more ]
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J-Pouch ForumsGeneral Discussion
Ab exercise 7 years post-op
L lixxie
skn69 Why don't you try asking for 2 or 3 sessions with a physiotherapist? Just to teach you what is good and bad for you and give you correct instructions for your back and abs. Sharon [ more ]
lixxie Thanks. Stomach is still pretty sore when I use them, which is pretty unavoidable. Starting to revert to my old post-op tactics, ie. lifting my weight with my arms, and rolling sideways out of bed. I wonder if I should see my doc about it, but not really sure what he'd do. [ more ]
vanessavy This might help http://www.fitnessprospector.com/?p=888 [ more ]
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J-Pouch ForumsGeneral Discussion
what j pouch??
J jbear
Spooky Wonderful to hear! There have been many, many days in my post takedown life too where I haven't given my pouch a second thought. I wish we could all have those days, and have them more often! [ more ]
dgtracy Amazing and awesome story!! i am exactly 4 months, 3 weeks and 1 day post takedown and somedays are noticeably different, some days i have the same moments where im like..."what J Pouch" lol, those days are a blessing and yep everyone around me is used to my pouch as well which is also a plus, i also love the fact that you have a new boyfriend, to me that lets others now that just because you went through this surgery and bathroom habits change doesnt mean there isnt someone out there who... [ more ]
suebear I love these stories, isn't life wonderful post UC? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Experiencing a situation - need advice
S samlc25
TE Marie I have been on it for a month at a time with no concern of a thinning problem from my GI's. The dosage is 25 mg so do the OTC if you want to, it is far less harmful than prednisone and it works well for lots of people with cuffitis. It's called Anucort here but it says on the suppository wrapper "hydrocortisone acetate 25 mg". If you can get that OTC then it's the same exact thing. It's a relatively cheap prescription so I'm thinking it won't cost much OTC and why not try. If it bothers you... [ more ]
jeane Ask your doctor for a 25mg prescription for anucort (I believe hydrocortisone) suppositories. This is a very common treatment for cuffitis. I have chronic cuffitis and use both canasa and anucort at times. You need to know, however, that doctor are reluctant to prescribe this for long periods of time due to the skin thinning concerns. I am not an expert, but they are probably trying to avoid this issue at the anastomosis connection. [ more ]
KrummeEs My GI did check me and apparently I suffer from Cuffitis. There are basically no blood in my stools, but plenty of bad burns. You can see my other posts for further information. I have been on Asacol suppositories, but it's hasn't helped. Now my GI wants me to start on pregnisone 10mg suppositories, but I dislike the idea of pregnisone. I'm considering buying hydrcortisone suppositories 25mg (can be bought without prescription in Spain where I live) and try it before I start on the... [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis and prednisone
JG Julie G
TE Marie Asacol is a name brand of mesalamine here that orally has a special coating so I think they'd be the same thing. Some people take hydrocortizone suppositories and they clear it up, they didn't work by themselves for me. I use them with the canasa when having a bad flare, Canasa (mesalamine) at night and hydrocortizone (anucort) during the day. If you can zap it with a short course of prednisone then go for it. It appears to be getting worse. Mental Kaze is giving a good alternative to the... [ more ]
KrummeEs Out of curiosity: Is the any difference between Asacol suppositories and Canasa suppositories? They are both Mesalamine products, right? You (Americans) always mention Canasa - is it supposed to be better than the Asacol? I can't buy Canasa here in Spain and Asacol doesn't seem to work for me. [ more ]
KrummeEs I tried Pentasa 1g (oral) twice, but it for sure didn't make me feel better. To be quite honest, then I no longer know if I'm better with or without Mesalamine (oral or suppositories), I have so many ups and downs. I just know for sure that it has not made a significant difference for me and I'm more sore if I have been using it. TEMarie, don't worry, I understood perfectly what you were saying and appreciate your replies very much! Thanks! I think ghats I'm ready to take the next step, it... [ more ]
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J-Pouch ForumsGeneral Discussion
inflammation
K KeepFighting(Manny)
TE Marie Dear Manny, Many of us have found that once you get one autoimmune disease others follow. I have several others myself including fibromyalgia, an under active thyroid etc. There's a kind of arthritis many UC'ers get and I've read about one that does involve sores similar to what you've described but can't remember what it is called. I think you need to go see a specialist. My BP dropped dramatically after my surgeries. I was on medication for high BP and it fell like a stock market crash... [ more ]
Lesandiego Manny, Do you find you sweat more since your colectomy / J-Pouch? I certainly did. Sometimes when I am doing moderate gardening, I am just dripping sweat from the top of my head. Never anywhere else from my body. Honestly, it feels like a torrential downpour. I never / hardly ever sweated prior to my colectomy. [ more ]
skn69 Not necessarily but you could become more aggressive! ...But you just said something else that made sense to me...you are body building...which means sweat...And some of us develop cysts from excess sweating or clogged pores that build up excess sebum behind them and cause cysts...are you getting them in the sweat zones or areas that are rubbed by clothing (elastic bands)? (armpits, hairline, crotch, back behind the knees...) If so , you may need to do a couple of thingg: only wear cotton... [ more ]
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J-Pouch ForumsGeneral Discussion
back in cleveland
ST shoot thru
Disneynut I used a belly band from Target (for pregnant woman). It worked great and it wasn't very expensive. [ more ]
liz11 That's good news. My hubby always says he can tell I'm starting to get better when I start nagging him too!!! [ more ]
shoot thru Think it was the 8th we left Was there 9 days.. She is much better. May get the drain tube out tomarrow. Went for a dye study friday at local hospital. Will know more tomarrow. Hardly anything draining any more. But still a bit yellowish.. Shes starting to nag a bit last few days.. so she feeling better..lol Anyone know of a decent stoma belt? She is susposed to gi back to work in a couple weeks. Was wanting something to conceal the bag a bit.. Thanks for everything. U guys are great... [ more ]
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J-Pouch ForumsGeneral Discussion
Candida
R Rachel88
Rachel88 Sounds good. Ill try anything! Thanks. [ more ]
vanessavy There are a lot of candida diet books on Amazon to check out. There is also an herbal med called Candida stroy http://www.amazon.com/Natures-...-15&keywords=candida That might help you. I can't take it. If I have it I can gladly send it to you. I have to check if I threw it out. I have IC so it made my bladder flare to bad, sadly. [ more ]
skn69 Not sure but I think that it was on the OK list...keep us posted on how you are doing.... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
checking in
Holly MHolly M
Holly M ewwwww don't want that to happen, will only use it as needed! Thanks [ more ]
mgmt10 Glad to hear you are well. I agree with Scott about the cornstarch. You could develop a nasty yeast infection from using it. I've heard of that happening. [ more ]
Scott F That's great news! You may want to be careful with the corn starch. I'm glad it's helping, but that's food, and some microorganisms may treat it as a buffet. [ more ]
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J-Pouch ForumsGeneral Discussion
Staph again?
toobusy2cleantoobusy2clean
toobusy2clean She tested negative to MRSA the first two times. They didn't test her for that this time. They gave her Zosyn and Vanco for nearly two weeks last time. Right now they are only giving her Zosyn because Vanco gives her red man's. I need to ask them to give it to her slower then they did yesterday. Her infection is on her labia and is very painful. The GI at Sanford told us she was getting them from the stool draining from her fistulas. [ more ]
ElmerFudd So was she diagnosed with MRSA? Or is this a run-of-the-mill staph bug? If MRSA, it's not surprising it's coming back. Also, staph is pretty much always present on us and some of us are more susceptible to staph infections than others and get infections of one kind or another on a recurrent basis. Other possible reasons: these infections are not getting completely killed off and the bacteria sticks around (possibly stronger bugs) to reinfect. So no really helpful explanations - just what... [ more ]
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J-Pouch ForumsGeneral Discussion
Biopsy Results.
SallyJPouchSallyJPouch
SallyJPouch Thanks Sharon, that is what I thought. I will call Monday (although my appt. with him is the following Monday, the 30th). This Monday I have an upper G.I....been a long time since I had one of those. I hope you are doing well...you have been on my mind. Sally [ more ]
CeeeeCeeee My docs (not my colorectal surgeon, however) always seem to call me on Friday afternoon when I'm not home. They leave a message to call them on Monday. Meanwhile, I have the weekend to imagine the worst! I always think, "What is wrong with "people"? [ more ]
skn69 Sally, I've been called in but never for good news...that said, sometimes the results are suspicious or non conclusive and they want to discuss redoing them with you...so don't panic...it could be just a precaution...take a hot bath or a long walk and think about something else until you can talk to him on the phone...or call the secretary back and ask for an immediate appt... Hang in there, I know how hard this sort of phone call is... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
I am curious about toilet paper . . .
DebraDebra
Debra CeeeeCeeee ... how lucky for you! I deal with fish for two days; even chocolate and some fruits don't change much. And am very sensitive to the odors of the toileting process. I would have to say I would want to carry a zip-lock with me to dispose of soiled tissue so it wouldn't contribute to the ambiance, so to speak. I love the idea of a squirt bottle, but that would not take off some of the very sticky or clingy stuff I wipe. (Ow ... very indelicate subject: sorry.) I use cut-up squares... [ more ]
CeeeeCeeee Very recently a local Vietnamese restaurant installed a sign in the bathroom that asked us to deposit used toilet paper in the trash rather than flush it down the toilet. It brought back memories of the same practice in Vietnam and China! BTW.....my B.M.s don't smell!!!!! Ever since my J-pouch reconnection I've been blessed with non-odorous poop! Lucky me! [ more ]
Goody2shoes Most places I have been to don't have proper plumbing - Most Greek islands have septic tank not mains sewerage systems, (now that stinks when it gets emptied!!!!) with small bore pipes which block easily, so toilet paper in bin!! Cyprus the same - have never thought about it before LOL !!! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch is 8 years old and so happy I had this done! But have questions......
CD Christopher Derrick
Mike H I have the same joint pain with my UC but now that I have my J pouch it isnt as bad. The rheumatologists did not help, they will just put you on hmira or remicade. I wold try glucosimine and visit a pain management doctor. [ more ]
Jan Dollar Well put and I couldn't agree more! I know for my enteropathic arthritis, excercise and activity is a huge factor in how I feel. The meds can only take me so far. I think the movement of "slow food" and eating natural foods pulls us away from a predominatly processed foods diet, and without even trying, you wind up improving your overall health. I am sure that having autoimmune disease puts you at a higher risk to be sensitive to all sorts of things. Naturally, food would be a big factor. I... [ more ]
Nice Nurse I'm going out on a limb here so please avoid any bashing. I have several auto-immune disease which if you have UC, you know is common in our population. Fibromyalgia and osteoarthritis are two of them. I have not completely changed my life but improved it around 75-90% by changing my diet. For years after my jpouch surgery (I am now 18 years out) I avoided salads, undercooked veggies and the like because I feared blockages. I have been hospitalized three times in the last 5 years with... [ more ]
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J-Pouch ForumsGeneral Discussion
In search of a jpouch surgeon at Cleveland Clinic
S Subrew
Disneynut Yay! I'm so glad you are going! [ more ]
n/a Good luck! Take a small, digital recorder along and ask if you can record your consult - she'll say sure. Have a list of questions ready. Take along a history of your medications, as well as copies of any pertinent medical records, such as biopsies, scope reports, etc. Let us know how it goes! [ more ]
Subrew I have my appointment scheduled for a surgery consult with Dr Hull on Oct 2 at 8 am. Wish me luck and will keep you posted. [ more ]
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J-Pouch ForumsGeneral Discussion
Bathroom Friendly Vacations
CTBarristerCTBarrister
hfc The toilets in China and India are truly an experience! Take your baby wipes! [ more ]
Jan Dollar Lew, sounds like a fabulous time! We loved Venice so much our first trip to Italy, we went back last year and spent a week there, in an apartment! Heaven!! Yes, those foreign toilets can make you feel like an idiot. Our first trip to Europe was on a river cruise. When we were wandering around in Dusseldorf I was so pleased to find a public toilet, and there wasn't even an attendant collecting money! It was modern with everything automated by motion sensors. No problem....until I went to... [ more ]
skn69 Wow! Lew, Your trip sounds fantastic and I am thrilled that your pouch behaved the whole time...European bathrooms require a PHD in door locking, light turning on and bowl flushing...I've lived here for 30yrs and honestly am still surprised at the ingenuity of some of the bathrooms here...yes, I still get locked in on occasion but now, I test the locks a couple of times with the door open before locking them behind me...having a multi-tool on your keychain w/flashlight helps too. So where is... [ more ]
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J-Pouch ForumsGeneral Discussion
Swollen cuff
P Pluot
mgmt10 Being that your takedown was recently, could the swelling be a normal part of the healing process? [ more ]
Pluot Bump! Sorry guys, any thoughts on this? I'm concerned that inserting the proctofoam is actually irritating the cuff more, but then I don't know how it will ever heal if I can't deliver meds to it... [ more ]
Pluot Thanks for the response jeane. Have you ever used Proctofoam for your cuffitis? If so, how long does it usually take to kick in? [ more ]
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J-Pouch ForumsGeneral Discussion
dark skin around old stoma sight?
K KeepFighting(Manny)
AyrishGrl I have had my stoma for 8 years (YIKES!) and I use a convex wafer and the skin where the wafer sits is a different color than the rest of my belly skin. There is a definite shape left by my wafer. I would say its normal. [ more ]
Spooky Yes, I had a discolouration of the skin around the ostomy site. I'm not sure if it's exactly what you describe; mine was sort of an after-impression of the barrier. You could actually see the square outline of the flange on the skin for quite some time. The skin there was darker and somewhat shinier than the skin on the rest of my body. Even my surgeon commented on this. But I had my ostomy for almost 2.5 years, though, probably why I had marks left. The discolouration eventually faded... [ more ]
Disneynut I had that dark circle for a long time. It's now all white. I can't remember how long it took, but one day it was all gone. [ more ]
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J-Pouch ForumsGeneral Discussion
Mayo Clinic
L LisaT
clouwho2 LisaT - I'm new here, hi! I just had takedown surgery (9/10/13) at Mayo in Phoenix. I don't know what their status is, but I flew from Utah to have the surgery here and I couldn't be happier with my choice. I had an incredible - extremely cautious, careful, and conservative - but incredible surgeon. He has been really good to me. I had no problems except dehydration post ileostomy (that's my body dealing with no colon, not the surgeon's fault). I feel amazing 1 week post op takedown and have... [ more ]
TE Marie I don't think you can go on just one person's opinion you need to go and check out the facility for yourself. But in the end it's all up to you. This is assuming you are wanting j-pouch surgeries. Please find out how many surgeries the surgeon has performed over how many years. If s/he will perform a laproscopic or open surgery and if you have UC how much of the rectum will be left at the rectal cuff, if any, and if there will be a mucosomy performed. Will they do a double stapled procedure... [ more ]
vanessavy I think it all depends on you, your case and the doctor. I went to MD anserson since they are the best for cancer treatment but I HATED the nurse in charge of the jpouch dept and could not imagine being with that place through it all. I go to CC because I think they are the best for my issues and I get nerve blocks done there, the top pain specialist in the world is at CC. I am sure every hospital has capable doctors and surgeons. For FAP related crap though the place I go to is Hopkins... [ more ]
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J-Pouch ForumsGeneral Discussion
Figs
CTBarristerCTBarrister
skn69 CTB, It all comes out in the end, no matter what you do! Sharon [ more ]
CTBarrister Dried figs, dried apricots, dates and prunes are all cousins in the natural laxative family. I think figs and prunes have the greatest laxative effect on me. As has been mentioned in this thread already, dried figs are a great source of fiber, copper, manganese, magnesium, potassium, calcium, and vitamin K, if you do not manage to crap all of it out. [ more ]
CeeeeCeeee I get the same reaction from very expensive Turkish dried apricots. I need to learn to eat just a couple at a time. (That'll be the day!) Sometimes I just decide to "pay the price"! [ more ]
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J-Pouch ForumsGeneral Discussion
GI Doc Burn Out Due To Constant Distress
Mental KaseMental Kase
Mental Kase Agree, Depending on precisely where I tag myself with that pen it can be uneventful or a nasty bite that turns into a purple welt. As for the Narcotics, they all have a unique personality. As you say, I found Norco sort of energizing and beneficial, almost a life tonic, just no downside for me there. Lol, and that's the problem, it's just all good. Very hard to prevent dose creep (yet, you've managed it, very good). **Below is my humble opinion only** Morphine is the sleeper dozer pill with... [ more ]
Jan Dollar I think the weakness, fatigue, mental effects of opiates are mostly when you first begin them. That effect should dissipate as you acclimate to it. For me, I am actually more mentally alert after a dose of my Norco. Not sure why, unless reducing pain allows me to focus onother things better. Just a theory... When I was on Humira, I needed to take it weekly because I definitely felt an increase in symptoms after only a week. I guess I had developed antibodies. So I was happy to switch to... [ more ]
Mental Kase Jan, Currently injecting Humira every other week (40mg/0.8ml), and low dose Azathioprine (50mg/d) was recently added. I was just recently approved for SSD. What a relief as I'm just about worthless for any productive activity. Currently still cash pay for all but when my new Insurance kicks in I will be asking questions. I seem to tolerate the Humira though I usually feel nausea the day of, and after the injection. I can't assess the Azathioprine at all though it did not work when it was my... [ more ]
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J-Pouch ForumsGeneral Discussion
Stiffness and soreness
C CaryO
TE Marie A few years before my surgeries, when my UC was flaring, I was very low on D and my Internist had me take some mega doses. Prescription strength like 100,000 or 150,000 units several times a week apart. Subsequently when I consulted a nutritionist she said that just getting into the "normal" range of 40 is not the optimal range. I alternate between taking 10,000 and 5,000 a day and am trying to get up to the 80 reading range. I'm in the mid 60 range now. I've also been tested for metals as... [ more ]
skn69 Here they do the 1xs or 2xs/yr vit D doses...Hubby has to do his 4xs/yr since the heart attack but mine is an annual thing...do they do it that way over there? Same with some other suppliments incluiding calcium mix for osteoperosis...they find it easier on the patient and the wallet (very cheap and nothing to remember...just 1xs after the annual visit). Took my 1st one in April...didn't notice any difference in my pain level...my only relief is exercise on a daily basis. Sitting while... [ more ]
Jan Dollar I had high hopes that vitamin D supplementation would help my joint pain. My doc began monitoring it a couple of years ago, and taking 4000 IU/day has brought me into normal range. But, alas, my joint pain persists My husband was also similarly deficient and still has his colon. He has UC though and deficiency is associated with UC. He didn't have the same joint pain. Hope supplements work for you Vanessa! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Something new for my diet
MT Mary Tara
Mary Tara Thank you for your replies, it's always very helpful indeed. Much appreciated. [ more ]
Jan Dollar I guess I was sort of a dummy, because I pretty much would eat whatever was appealing to me within a few weeks of my surgery. Never had any problems with anything, other than some diarrhea (and adding to my waistline!). But, it is fine to experiment with foods, especially foods you really want. Just go easy on the portions. Jan [ more ]
suebear I eat all nuts,seeds, and copious amounts of popcorn with no problems. If you think it might bother you, try eating a small amount and see how you do. Sue [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
HGH for J-Pouch
A ARP83
skn69 Sounds interesting...keep us posted on any incoming info please. Sharon [ more ]
boy's mom Curious if anyone has had anymore experience with growth hormone since these last posts? Thanks. [ more ]
dew I started just before my j-pouch. Had a brain tumor next to my pituitary and the radiation treatments put an end to any pit function. In fact I think the radiation may have contributed to my sudden onset of colitis. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Question re: Pentasa (aka Rowasa) enema
SpookySpooky
Laney I just want to thank you, Jan, for being so kind in answering our questions. You seem a voice of calm and reason. Thank you for that! [ more ]
Spooky Absolutely, I'm definitely not using it. I'm not even sure it's worthwhile talking to the pharmacist, since I'm sure sure she'll just tell me to call my doctor back for advice - and to that I say, see above. What's unfortunate is now I have 3 unused boxes of the stuff. I guess I'll hang on to it for now. [ more ]
Jan Dollar I would talk to the pharmacist, as they are equipped to answer medication side effects (probably better than the prescribing physician or his nurse). But, you already know what the best plan is, since the difference between using it and not is so dramatic. Jan [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
Cleveland Clinic Guest House closed
A ActiveUC'er
Mike H Hi Vanessavy I am at the clinic now but going home tomorrow. Just had my J pouch takedown surgery and things are working well. My wife is staying at the Comfort Inn 10 minutes away in Independens for $55 per night (clinic rate) the only down side is no shuttle to clinic. We were paying $105 a night at the Courtyard but this place is just across the street from the Courtyard so we switched. It is older bt very clean and staff is great. [ more ]
vanessavy A dump that was way overpriced!! Good riddance. Comfort in is 80 a night, free parking and shuttle to CC or healthline takes you there in 10min. [ more ]
liz11 good point uc'er. We stayed there once, but even if it wasn't a dump, we could've never afforded to stay there again. It is unfortunate CC hasn't arranged a decent hotel with decent rates on campus. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
continuing loss of iron
BM boy's mom
phonix2g Go see a hematologist they will test you for everything under the sun. They took 10 bikes of blood the first time I went. If you are iron deficient they will most likely want to try out oral iron supplements and if those aren't doing the job the will most likely hook you up with an iron drip to speed things up. The iron supplements won't work overnight they take some time to show results. Be aware also you will almost be guaranteed side effects such and stomach pains and cramping. I noticed... [ more ]
Scott F Iron absorption issues generally only come into play if bleeding of some sort creates an deficit. This is more complicated for women, because iron loss through menstruation definitely counts. If a male has low iron then the bleeding question is usually more important than the absorption question. [ more ]
mgmt10 I have iron issues and we came to the conclusion that it is an absorbtion issue. For me, oral iron does nothing. I go for periodic iron infusions and I see a hematologist for this. I go every three months for blood work and I get the infusions as needed. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Feeling Light Headed Every Day
K Kobe
skn69 There could also be a lowgrade, generalised infection brewing in some people (I had gram positive staff)...I carried a nasty one for about a yr before it was diagnosised..I could barely make it up the stairs in my building to get to my front door...cried for a year from the fatigue...they got a handle on the infection and after that I was fine... Sharon [ more ]
phonix2g I was extremely anemic for a good 3 months after my takedown and what you are experiencing was everyday for me living with that anemia so that could definitely be the cause. We all lose a lot of blood from the surgeries that it causes anemia in some of us. I was always anemic from my previous flare ups and most like was still when I went into surgery. This could be your problem and it will fix itself as time goes by. They had me on iron pills (ferrous sulfate) for months which helped give me... [ more ]
vanessavy I went to a million doctors this year I swear! And I googled that this is so common with fatigue and chronic pain. Get your Vitamin D checked,not B like everyone talks about. I was in and out of the ER, felt like I was going to pass out. Loss function of my legs, etc. Vitamin D deficient big time. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Looking for some supplies.
Clever1Clever1
Mike H My health insurance covers everything y9u mentioned for my supplies and they even let me order 90 day supply atonce rather than the 30 day supply. I had my takedown yesterday so I have quite a bit left over of the bags and wafers you mentioned, along with adhesive remover, powder and hollihesive. [ more ]
Clever1 Thanks, I do not yet have a Facebook page for the belts. I guess I should. I found Dennis and Nadia's web site. I emailed them, lets see what happens. Thanks again Alan Z [ more ]
TE Marie I love your belts - clever idea! Do they charge you to have a facebook page about them? I sent my left over Convatec to the Osto group over 2 years ago. Have you ever called and asked them and the other company for samples? They sent me a lot of them. There is another group on FBook that asks for and distributes supplies. Dennis and Nadia's page, I forget what it's called. Denis has a lot of U-tubes about all phases of j-pouch surgeries through pouchitis and Nadia has similar ones including... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
5 week post takedown update! no more regrets!!!!!
K KeepFighting(Manny)
Mental Kase Yes, what Jan said. Manny, it's a Marathon. I hope the ride is smooth as silk for you too but if and when issues arise -just try to stay calm and get on top of it quickly and keep up that good attitude. MK [ more ]
Scott F I've mostly stopped feeling uncomfortable with the idea of having noisy gas in a bathroom. It's a bathroom, for goodness' sake! I will confess that I behave differently when it's not anonymous (e.g. my boss walked in with me). [ more ]
Disneynut Scott, I agree. You begin to know when it's going to be loud so I usually try to wait until someone flushes, or I flush so people can't hear. Also, if there are hand dryers, it's great. I wait until someone uses one and then go. [ more ]
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Any word from Shell?
nysnys
Shell Worrall Thanks guys! What a great reception! I know, I've been really lax about coming online lately. I'll try to log on a little more often. Jill, my problem is I have to cut the white tape off my wafers (Convatec moldables) because I developed an allergy to it so they don't last as long as they used to. I've tried picture framing them with different products including those half moon shaped things from Coloplast (I can't remember the name either) along with various other products, but they all... [ more ]
CeeeeCeeee I missed you, Shell! Glad to hear from you! [ more ]
liz11 also shell look at sure seals. I find them better than the coloplast brava strips, because like jill said.. those brava strips are a downright painful mess to get off. Sure seals work great for me. I also know several others who swear by them who live in FL and swim a lot. I was just in FL a few months ago.. and I did change a day or so sooner than usual, but other than that.. no problems. Enjoy your vaca. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Will wellbutrin be able to be absorbed without colon its hard tablet.
FrancesFrances
Mental Kase Hello- The absorption of most nutrients and drugs takes place in the area of the terminal ileum (If I remember my A&P training). The Colon is primarily responsible for resorption of water and bile salts. J-Pouchers often have stools that are rich in bile salts due to that lack of Colon. It also changes the smell and consistency of the stool. As for breakdown of pills -First they get blasted with Gastric acid and churned in the Stomach, then they get a slow journey in the upper small... [ more ]
Frances Thanks so much i was feeling little better but now i feel i could cry all day. I think it has alot to do with gaining 40 pounds. I work out 4 to 5 times a week and burn about 500 calories and eat well and nothing not a pound. I know i need to get out more but with the opium i have to be very careful driving when i can and can not. I go to therapy tomorrow and sad but i cant wait. Its through the college so they are allmost done with school and its a teaching college. Its very inexpensive so... [ more ]
saharagold I am on Wellbutrin and when I came home from the hospital after my first step surgery, I wondered what would happen to the buproprion XLs I was taking at home. Well, after the first time I took it, I just saw a fragment of the outer thin shell (it was my only white med) in my pouch. I worked with my psychiatrist and he switched me to the buproprion SR, saying that even though it was still extended release, it was absorbed more quickly than the XL. The reason it is absorbed faster is the way... [ more ]
See all 10 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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