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J-Pouch ForumsWomen's Health & Pregnancy
Anyone had a pouch to uterus fistula?
LizzLizz
Jan Dollar I'm sure it all depends on what angle the view is on the MRI. Dr. Shen noted there was a subtle change, but probably could not actually see what that was. I suspect that if you had repeat imaging, it would not be so subtle. There have been people here who have had abscesses defy all sorts of imaging and it was not until exploratory surgery that they were able to really see what was going on. Even with the EUA, they only "see" what is visible within their view, not what is going on inside. I... [ more ]
Lizz Lol! Me either, Jan I would have to be the one to break with tradition, right? I went to my PCP today to get a pelvic exam (she said my cervix was irritated and red) and we reviewed the CT. There was a big pocket of air at the top of my uterus where it touches my J-pouch, so we supposed that was the fistula. I'm confused b/c when Dr. Shen saw the MRI he said, "Very subtle change in pouch vaginal fistula." I would think there's a significant difference in the uterus and vagina. I'm so confused. [ more ]
Jan Dollar Oh my gosh Liz! I would be surprised if anyone here has that. I've been around for over a decade and never recall someone with this. I was not even able to find any info on the net about it. The only uterine fistulas I read about were from the bladder to the uterus. This would have to be Crohn's related I would think, but I honestly don't know. What are they doing other than antibiotics? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
protein smoothies
I iHateColitis
Jan Dollar It may well be related to the physical aspect of your surgery, or it may be that you have something new going on that could have been triggered by the surgery. Examples could be lactose and/or gluten intolerance, Crohn's disease, etc. But, if supplementing with protein shakes turns it around for you, I guess that is good enough. But, if you have gluten intolerance, it probably is worthwhile to find out, because continuing to eat gluten can permanently damage your small bowel. Jan [ more ]
iHateColitis Jan - So do you think my absorption problems are for a reason unconnected to my jpouch surgery? Or is it just that every jpoucher's body works differently? After surgery, which has been 8 years now, the only time I ever gain any weight is when I drink a protein supplement. Other than that, I stay extremely thin. [ more ]
Jan Dollar Protein smoothies are fine, especially if YOU feel that they are more effective for you than ordinary food. However, it really is not true that we do not absorb nutrients optimally because of j-pouch surgery, at least not as a general rule. As a case in point, for me personally, I did nothing but gain weight post op, no matter how bad my diarrhea might be. I seemed to absorb every calorie that passed my lips. It was such a problem that I had to join a medically managed weight loss program... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF Transfer today, Quick Question
MD Meg Drum
Meg Drum Hi Jill- Thanks for the advice. My doctor/RN told me also not to take a home pregnancy test also! Did you deal with any hydration issues while pregnant. That is my biggest fear. Because I always feel dehydrated no matter how much I drink, do you ladies have any tricks. I drink coconut water. Thanks for the reply its amazing how this site help you to relax. [ more ]
JillM My clinic told me there was nothing I could do to make the embryo more likely - or less likely - to stick. They don't even promote the idea of lying flat w knees raised after the transfer. I got pregnant three times (miscarried the second) so they must know what they are doing! Try not to worry too much, and keep really busy during the 2ww. The best thing is to go out a lot - dinner, movies, etc...And try to avoid HPTs - my second cycle I took one, it was positive, but when I went for my... [ more ]
Meg Drum Thanks so much!!! I thought I was the only one that thought of this issue Everytime I go I try not to push too hard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cleveland clinic
P Pen
liz11 are you sure they don't take your insurance? I have some kind of blue cross insurance and they definitely take my insurance. I suggest you call your insurance company directly ANd or CC and find out for sure. [ more ]
TE Marie A few suggestions: Ask whoever is referring you to refer you to a Blue Cross physician. Also call Blue Cross and ask them if they cover it if you are referred to CC. [ more ]
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J-Pouch ForumsGeneral Discussion
Diet and exercise.
KelseyHey2308KelseyHey2308
Scott F Instead of being scared of particular foods, try them in moderation to see how you tolerate them. Things that might have a mechanical effect (e..g. veggies) could be well tolerated in small amounts over the course of the day, instead of a large amount all at once. Don't be afraid to do gentle experiments, and you may have to repeat them to be confident about the results. And walking is indeed great exercise. [ more ]
TE Marie I have been watching too much of the boob tube too for 3 years since the beginning of my flare from hell to surgeries to problems after. My fibromyalgia got worse with all of this and I can't concentrate so reading a book or working is impossible. I lost a lot of weight after the surgeries as I wasn't hungry as everything I ate was going to hurt as it went through my system. If my husband hadn't cooked I probably would have lost a lot more. I can't exercise as have neuropathy in my feet and... [ more ]
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J-Pouch ForumsGeneral Discussion
Check ups?
L LizTish22
Scott F It's completely reasonable to ask for sedation if you have a stricture that you think will cause significant discomfort. Sedation is generally unnecessary for a straightforward pouchoscopy, but your case is simply different. You'd need a ride, though... [ more ]
WW_Domenic My physician did give me a mild sedative for my first scope. Hopefully yours will also. My last one was quite easy and painless so they do get easier with time. [ more ]
LizTish22 Thanks everyone for your response! I think I kind of already knew the answer but was hoping I was wrong. I'm dreading going back because I have been purposefully avoiding seeing my surgeon again. After my surgery, he insisted on my dilating myself to prevent my stricture at the connecting part from getting any smaller. A the time he couldn't even pass his pinky through upon exam. It wasn't bothering me so I never followed through. It was just too painful. He knew and kept warning me it could... [ more ]
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J-Pouch ForumsOstomy & Skin
swollen, bleeding stoma
SF Sierran Farmer
Jan Dollar Barb, You may want to PM Liz. She has been struggling with a persistent sinus tract/infection and has been seeing Drs. Remzi and Shen at CC. Maybe if you compare notes with her, you might get some new insight and ideas. http://j-pouch.org/eve/persona...profile&u=3721048013 I would suspect that you may have a deep cavity abscess, which is the source of many, if not all, of your symptoms. Jan Update: I had posted the wrong link (wrong Liz). Sorry about that. I fixed it. [ more ]
Sierran Farmer Thanks, Jan. Nope, have barbie butt now. Yep, it certainly looks like a fistula to me. I've not had the cutaneous wound before, but who knows what this body is trying to do!? I don't have a lot of energy because of the dehydration and fluctuating b.p., but having watched the fistulas before, I anticipate what's in store as the drainage increases.....Maybe if I get the hydration/tissue fluids issues solved, the fistula will close. Don't know if this is the same fistula spot as before - they... [ more ]
Jan Dollar Gee, with the symptoms you describe, this sure sounds like a relapse of the fistula. You don't still have your rectum, do you? Third spacing of fluids will cause swelling/edema, but shouldn't cause a new fistula. If it was already there, I suppose the fluids could cUse it to drain. I hope that things will simmer down until you can get back to SF. I'm sorry you are having this setback. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Farting
AlexisAlexis
Kia LOL, Holly! Agreed. WW_Domenic, so glad you had a better night! Marie, I haven't tried those products, but will definitely check them out. Thanks for the info! [ more ]
Holly M farting, burping, pooping love it! what other site can we talk like this and understand each others bodily functions so well!! [ more ]
WW_Domenic I had a coupon...so I went with Gas-X. I'm trying 2 tabs a day... 1 in the morning and 1 before bed. Hopefully that will help some. Had a good night last night. Was up only once. [ more ]
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J-Pouch ForumsK-Pouch Korner
Getting scared, need info please.
EricEric
AlexanderC Hi Eric, I recognise what you are talking about. When I had my panproctocolectomy I was fine the first day after surgery, albeit completely out of it, but I remember none of that. All I remember is waking up on the second night and not knowing where I was or why. I was convinced it was a nightmare about some game show set up and pulled out my nasogastric tube. I was about to pull out the others when the nurses intervened. They called my wife from my mobile and she had to tell me why I was... [ more ]
skn69 Hi Sweetie, Calm down, take a deep breath and think...Who prescribes those anxiety meds for you??? He is the go to guy to talk to about drug interactions/associations and find out if you cannot switch to another med or even wean off of it until after surgery...not sure that an antianxiiety med will do you that much good if its interaction with the anesthetic is that terrifying and potentially dangerous for you post op...Have him make an apt to see/talk to your anesthesiologist and get this... [ more ]
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J-Pouch ForumsGeneral Discussion
Will it ever be ok.
R Risaac
Risaac Thanks for the info guys ill try the pro biotic and metimucl, can't hurt right I've tried practically everything else. I just finished a course of antibiotics for pouchitis but I must have not been enough. [ more ]
Scott F One other thought: if beer seems to help, you might want to try a yeast probiotic called S boulardi. The right yeast might work better than the little bit in the beer. I also find that the bacterial probiotic VSL #3 helps. [ more ]
Scott F Benefiber seemed to make me worse, too. Psyllium (Metamucil) helps me thicken things up. I don't count trips to the bathroom as long as they aren't urgent or causing accidents at night. I agree that bleeding isn't normal unless it's rare and in small quantity. [ more ]
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J-Pouch ForumsGeneral Discussion
anyone in elavil?
S shawanna24
jeffp I took Elavil for a long time and the drowsiness never went away totally, but it got better after about two weeks. It helped me to take it earlier in the evening instead of right at bedtime. Eventually, I switched to nortriptyline, the cousin of Elavil. It doesn't cause as much drowsiness. [ more ]
Jan Dollar Those sort of side effects typically resolve as your body acclimates. If it is just too much to deal with, contact Dr. Shen to see about a lower dose. It is the Elavil (tricyclic antidepressant) that is supposed to help with IPS. A lower dose than what is needed to treat depression is prescribed. Some people are more sensitive to the side effects and need to start with a very low dose. This drug is for regular use. The Ativan is for the anxiety, and for just occasional use, so not as helpful... [ more ]
Bodoni You may want to read this: Elavil (amitryptiline) belongs to the class of tricyclic antidepressants. It is available in generic form. Elavil is used to treat depression and mood disorders. It may also be used to treat other conditions including nerve pain, eating disorder, anxiety, and panic disorder. The most common side effects are drowsiness, dry mouth, and dizziness. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am so over having a JPouch!
Not your average gal!Not your average gal!
Jan Dollar Sorry, Paul, I did not mean to offend or belittle you. Poor choice of words I guess. I just meant that some docs are strictly business, and do not have much in the way personality or bedside manner. This can be quite off-putting for some, particularly when they had to wait a long time for an appointment. Jan [ more ]
pauln jan dollar,i can assure you my comments do not mean i wanted dr shen to hold my hand in your words,i have legitimate concerns and no amount of attempting to belittle me personally will work,all i was doing was commenting on my personal experience because i did not say he can walk on water does not mean i believe he is a bad doctor,point is maybe we did not click personality wise. pmj [ more ]
TE Marie pauln, I was diagnosed, along with cuffitis, with IPS by my Mayo GI last summer. I still have daily pain when cuffitis free and am taking an antispasmodic and Norco, hydrocodone & tylenol. They also say I have adhesion pain as have ruled out strictures etc. One antispasmodic I tried made me throw-up so I'm back to what I took when I had UC, dicyclomine. I had IBS too. I don't know if it works or not as I'm still in daily pain. Has the medication Dr. Shen prescribed for you helped? What... [ more ]
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J-Pouch ForumsGeneral Discussion
Do you know how to just BE?
K Kia
TE Marie Pouch4Wf and all other UC related folks, I thought I was going to be cured of my UC with the operation, I was told that and I was lied to as I was not cured. If you or your family member had the double stapled procedure they left approx 2cm of the rectum attached to the rectal stump. this 2cm can get UC and that is called cuffitis. It is rare and only UC folks can get it. If you had the surgery with a muscosomy(?) and hand sewn procedure your chances are less of having cuffitis (UC)but... [ more ]
skn69 Kia, I remember when I had just gotten out of the hospital post K pouch surgery and my dad took me to my favorite café/French bakery...as we were getting out of the car the 'urge' hit me and I went into panic mode (I was 100% incontenent pre-kpouch)...hot and cold sweats, fear, shaking etc...a knee-jerk reaction to that 'down-there' feeling like it was all about to pour out...it took my concious brain about 1min to inform my unconcious brain that I no longer had a problem and that I had a k... [ more ]
mgmt10 For me I guess I will always have "poop" on my mind, especially when I go out somewhere like going out to dinner (always have to go a half hour after eating dinner) or on an outing for the day or something like that. But the positive side of that is, it isn't like the UC days where those bathroom trips were accompanied with pain and urgency. At least now I can hold it until its convenient to go. But I find myself thinking sometimes when I'm out to dinner with friends how nice it must be not... [ more ]
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J-Pouch ForumsGeneral Discussion
Resting versus pushing myself.
K Kia
TE Marie It is so hard to explain to others. Please tell your daughter you are ill and doing the best you can. I don't know how old you or your daughter are. You will just get more ill if you do too much. Trust me, I did that when I had UC and pushed myself right into fibromyalgia. I'm not saying that will happen to you but once you get an autoimmune disease others can and do follow. Once you are run down the easier it is for something else to grab hold. Have you had your thyroid, D, B12 and Iron... [ more ]
Kia Hi Marie, I ended up talking with the doc's office yesterday and was told to at least take 2 until my appt on Thursday. I did it yesterday and had no probs. I am trying to take all three today. I definitely don't want to drag out the recovery, either. I need to get back on my feet. The husband is being patient, but it's been a long 27 year battle and he is also worn out from it. My daughter was upset last nite bc I haven't been able to be "present" very much lately. I'm just going to have to... [ more ]
TE Marie I'm concerned you are not taking as much flagyl as prescribed. I take it for c-diff and one time didn't take the last 4 or 5 doses and wonder if that is why it came back a few weeks later. If it is that hard for you to take can you take something else? I know some people can't take it at all. You have to do what you have to do to take care of your family! So you had to cut back. I just hope it doesn't set you back in kicking your pouchitis. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Crohn's and pouch advancement?
J jeane
TE Marie It took months to work for me. Not a quick thing as my local GI and surgeon were expecting. I kept trying Anucort then Canasa then Anucort etc. I had been off and on them for almost 4 months before my GI sent me to Mayo. The Mayo GI Specialist said to use Canasa until it worked and gave me a 6 month prescription. I think it was jeanne that told me it took her 3 or 4 months of steady use to go into remission with Canasa but both of us have it recurring. He told me after it was better I needed... [ more ]
RLC TE Marie - I am one of those that is allergic to asacol. My surgeon prescribed canasa and I told him about the allergy but he said the body wouldn't react the same. I have taken it on and off and don't seem to have a problem with it but again, it isn't a cure. I did use it the other day to try and stop the bleeding and it seemed to work. Always trial and error with all these meds. Happy weekend - Roberta [ more ]
TE Marie I am so sorry the suppositories are not helping you at all. Are you having side effects like we get from prednisone? I didn't notice any side effects when I was on the Anucort but was so miserable and had c-diff too so don't know if I would have noticed or not. I've found out on here that some people were allergic to Asacol, or mesalamine, before the surgeries. I took it for years. Obviously it didn't keep me from having the surgeries. Mesalamine is the ingredient in Canasa so I didn't have... [ more ]
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J-Pouch ForumsK-Pouch Korner
Leaky Valve ?
A Aggie
VirginiaMoose Aggie, Thanks for getting back to me. Hope you have a full recovery soon. [ more ]
Aggie I had my pouch revision on Feb. 19, by Dr. Bauer at Mt. Sini in NYC. He redid my valve because it was slipped and enlarged my pouch. Also had my both ovaries & tubes removed at the same time. Still recuperating. Not a simple procedure. [ more ]
VirginiaMoose Aggie, What a great way to phrase it! I've had my kock pouch since 1983. I had a little leaking pretty early on but learned to live with it because in the early years it just wasn't to bad. It has been getting worse and worse over the last couple of years. At home I use a bounty paper towel folded and a small piece of thin plastic about 4 x 4" and like you, I know when I leak and can rush to the bathroom but I don't leave home without a stoma cap on. Leakage can be so bad sometimes that even... [ more ]
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J-Pouch ForumsGeneral Discussion
Amazing what CT Scans find
guzzunderguzzunder
Pouch4Wf Incidental findings are very common with CT scans. Fortunately, they are usually nothing that needs to be medically addressed. UNfortunately, any responsible doctor will want to do follow-up tests or exams, investigating to make sure that the findings are nothing. There are scanning centers that you can walk into and get a "whole" body scan. They make their money, knowing that they can always find something.... Nothing like another machine to feed our paranoia Pouch4Wf [ more ]
CTBarrister Anklylosing spondylitis is an autoimmune disorder. Many people who suffer from IBD, which is also caused by an automimmune disorder, also suffer from AS. AS is not really an "incidental" or unrelated finding as many people who have it also have IBD and the two disorders are related and not incidental. One of my best friends has both AS and Crohn's which he began treating with Humira 2 years ago. The AS was worse than the Crohn's (severe pain in the joints in his hands and back), but he told... [ more ]
guzzunder Hi guys, Thanks for your replies, I wasn't aware I had any of these things wrong with me specially ankylosing spondylitis, seems that each CT Scan they find something else, but such is life. All in all I am please with all my outcomes, never really had anything to complain about until I had the cancer. Must be the process of ageing, but got to always be positive Regards Bob [ more ]
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J-Pouch ForumsK-Pouch Korner
Dr. Schiller
DH Donna H
VirginiaMoose I just had a phone appointment with Dr. Schiller today and was very impressed by him. I've had my kock pouch since 1983 but have been having leakage problems that have been getting worse over the last several years. My local surgeon recommend Dr. Schiller for a valve revision. I'd also like to hear from others who have had Dr. Schiller. [ more ]
amos Dr. Schiller is the best Dr. Surgeon I have ever met. He did my pouch. Every time I have had a question or concern he calls me back, and I don't mean calls back in a day or two, I mean within mins, to maybe a few hours depending on how you answer his phone message. I can't say enough about him. I have had a lot of surgeries with other dr. But Dr. Schiller really does care for is patients. [ more ]
dpol Dr. Robert Beart is very knowledgeable about Kpouches and he helped me resolve my problem. He was trained at Mayo Clinic. His practice is in Glendale California. [ more ]
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J-Pouch ForumsGeneral Discussion
Playing with Flagyl Dose
K Kia
Kia Yes, Jan, bc it has gone on so long I cried for a week after finding this forum. It was like a miracle being able to put a name to my symptoms and find relief for something I thought I was stuck with for life. It feels like when my colon was removed....a rebirth and a second chance at life. [ more ]
Jan Dollar Boy, that's a long time to be suffering without any relief of your symptoms. I would not be surprised if it started out as complications from your childbirth tear, but most of us will get pouchitis at some point, and left untreated, it will fester. What a shame that none of your prior doctors felt that there was any need for further investigation. But, you have found this forum to help you help yourself, so hopefully that makes up a little for your lost time. Jan [ more ]
Kia I can't really comment, either, about how bad it was compared to others. I only know what I was dealing with. For 13 years I assumed it was due to a bad tear during vaginal birth as that is when the incontince started. For all I know, this could have been brewing that long. And, yes, I did try specialists along the way who never mentioned this thing called pouchitis. I never heard of it until finding this forum. I think they just jumped to an assumption based on my mentioning when this all ... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
need to hear about others fistula experiences
N NJK
hart155 I had a few pop up right after my initial surgeries. They could not be repaired directly because the tissue wasn't healthy enough and an advancement flap procedure as well as mesh also failed. They were always better during anti-biotics because the output was too thick to get through...not gone though. I eventually had a gracilis muscle graft to repair them. Fine to deal with when they are small but mine "burst" and there was essentially little separating my vagina and rectum. It can be very... [ more ]
tammykathleen Hi NJK, I have four fistulas with setons. What type of questions do you have? I would PM you but I actually don't know how to do that (despite being active on this site for years), but I can respond if you PM me. It can be a daunting process and isn't fun. But please ask me anything you want, no matter how graphic, because I wish I had known more about them before it happened to me. ~Tammy [ more ]
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J-Pouch ForumsHelp! Need advice now!
getting a mucosectomy
M Maximaus
TE Marie Maximaus - I don't remember if we heard how your surgery went? How are you doing? [ more ]
Pouchomarx does a mucosectomy require a temp ileo? if not why not just load up on pain meds for the pain? [ more ]
TE Marie Good luck on your surgery. It's been a painful 10 years for you and it would be wonderful if you were pain free. I've been wondering if I am eventually going to need the same surgery for my chronic cuffitis. Please let us know how you are doing. Take Care [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch advancement recovery
V vstRN
Jan Dollar Allycat and dtmack had pouch advancement surgery. Here is a link to a prior thread. You can access their profiles there and send them a private message if you want to discuss it with them. http://j-pouch.org/eve/forums/...337097126#8337097126 Jan [ more ]
kathy smith Have you PM'd jeanne? I think she might know something about pouch advancement. kathy [ more ]
Dog Never even heard of a pouch advancement surgery, sorry. Hopefully it won't be painful! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gas pains? Muscle strain? Worse?
K KCookie
kathy smith Yep, it's often quite a bit worse for the non-patient. But it's wonderful that he has you as his advocate. kathy [ more ]
KCookie Thanks for the response. He is feeling a bit better, but is having to pop his hernia a bit more than usual. I just constantly worry about him. It's terrible watching the one you love be in any discomfort or pain. He's the 'strong' one in our marriage, not me, so it's difficult to put on my game face, which makes me feel really selfish since he's the one with the disease. I just want to cry out of fear, anger, and frustration all the time! Thanks for listening. [ more ]
kathy smith It could be muscle strain. But just to be on the safe side, you should give his doctor a call. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Salt as an autoimmune trigger?
ElmerFuddElmerFudd
kathy smith I also read that Steve. But it's one of those things that I probably won't be reducing or eliminating. I mean, really? Potato chips? French fries? Nope, still a staple. kathy [ more ]
Jan Dollar Interesting, Steve. Of course, there are a myriad of reasons why you should restrict your salt intake (except in the early post op months when you are likely to be salt depleted), so no surprise there is another reason to toss on the stack. Funny though, we were not big salt consumers when I was growing up. Mostly freshly cooked meals, no salting at the table, and seldom went to fast food joints or got goodies like potato chips. Yet, here I am. Now, my son is another story- lover of snack... [ more ]
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J-Pouch ForumsGeneral Discussion
Take down was a week ago
J Jenmystique
lovedby2 I try to stay put as well. When I do have to change positions, I try to go very slow. Like I said earlier, I get after my husband, he's bigger than me, so his movements really shake the bed. At first he didn't understand and would get upset, thinking I was just nagging.. but he now knows, I mean it! Heidi [ more ]
CeeeeCeeee Changing positions moves the effluent from one part of our pouch to another. When it puts some pressure on the sphinctors, it signals having to go to the toilet. This sort of keeps me sleeping in one position for as long as possible. If I do turn over I do need to visit the bathroom in order to be comfortable. Oh, well! [ more ]
Av8erchic I purchased a heating pad after my surgery. It's been really helpful on days that my tummy hurts. They're fairly inexpensive and it might help relieve some of the pain associated with being bloated! [ more ]
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J-Pouch ForumsGeneral Discussion
I shouldnt have trusted that fart last night....
PouchomarxPouchomarx
Murray 3 weeks post takedown and Im farting like I use to. but I will admit I had one sneeker this week, wasent big, but yuck. [ more ]
lovedby2 You are right, I never push, it just happens! Lol. I can remember my first, it happened in the hospital. I had complications, so I was there almost 20 days. But when it finally did happen, a male Chinese nurse was at the computer LOL he turned and looked at me with a bug smoke.. was that you, he said... Yes!! We both cheered hahaha [ more ]
Jenmystique uh oh. I've been lucky but it wasn't me trusting them. It just happened. And it's only been 3 weeks. I have a long away to go to have many accidents. [ more ]
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J-Pouch ForumsGeneral Discussion
Medical Expenses Tax Deduction
CTBarristerCTBarrister
Lorsall Yep, we have qualified for the past four years and it is looking good for our 2013 taxes as well. I have already had one surgery ths year, and it appears the implanted device is malfunctioning, so we are probably looking at another surgery soon. My pouch has been misbehaving, so I am seeing a C/R surgeon next week to see if he can help, and if not it is off to Cleveland in April. We have insurance, but still pay a lot out of pocket, and I have not been able to work due to my health, so our... [ more ]
Stone I hope to God I can get back anything I spent on my medical bills. I definitely went broke after my surgery. I don't no when i'll ever get back or at least half back to where I was. There was another post someone put up about eating fruit. Fruit is the best thing ever if you can afford it. Out here cantelope is like two for six bucks thats three bucks a piece outrageous. If our president would look at us and realize it's not our fault we got sick and repay us back what we paid I think it... [ more ]
Subzeromambo We have met it for the last three years. [ more ]
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J-Pouch ForumsGeneral Discussion
vitamins?
M mads101
CTBarrister You are still growing and you need to have strong and healthy bones. Vitamin D and calcium strengthen the bones. I also take vitamin D and calcium, this due to slightly low vitamin D levels and an osteopenia finding in my bones. [ more ]
Jan Dollar They only put you on high doses of vitamin D if your levels are low. It may not even have to do with your surgery, as people with IBD tend to have low D levels as compared to the normal population. They used to think that vitamin D only prevented rickets, but they now know it has properties like a hormone. It still is not fully understood and they are still researching it. You may need long term supplementation. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036961/ Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Does anyone else experience this? Advice please!
M mads101
lovedby2 I experience a sharp pain once in awhile on ny right side just below my rib cage. It hurts a lot! Not sure what it is? I was associating it with my abdomen scar, locate on ny right side next to my belly button, but I don't think its related. My scars don't hurt. Heidi [ more ]
Jan Dollar Hopefully, it will not persist and you won't have to address it. Here is a link about mittleschmerz. http://en.wikipedia.org/wiki/Mittelschmerz Jan [ more ]
mads101 Jan, Thanks so much! I will definitely keep that in mind. It seems to come and go, but it is not at all like period cramps or anything. I am so glad to have found this site, it really has helped. Thanks Again(: [ more ]
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J-Pouch ForumsPouchitis
Dilation being done on Thursday
Tootsie0402Tootsie0402
Jan Dollar Here is a link to an article by Dr. Bo Shen at Cleveland Clinic regarding strictures and their treatment. http://my.clevelandclinic.org/.../spring_2005_pog.pdf If you want to read more in depth on the topic, here is a link to Dr. Shen's full journal article about balloon dilation. http://www.lerner.ccf.org/path...hen2004AmJGastro.pdf Jan [ more ]
Tootsie0402 Thank you for the replies. This helps. The stricture, according to the surgeon is "pretty tight" (?) Hopefully I will not need additional dilations done. Next time I will post under General Discussion. Thanks again. [ more ]
Jan Dollar I have never had a dilation, but have read oodles of posts from others who have had it. Like Liz said, it was just a few days of the pain and bleeding, but in addition, most everyone feels immediate relief in regard to their emptying issues. The pain and bleeding is variable, depending on how tight the stricture is. If it was a very fibrosed stricture, there may even be some incontinence for a few days, from the trauma. These strictures can recur, so pay attention to your symptoms returning,... [ more ]
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J-Pouch ForumsGeneral Discussion
One thing to another insurance denial!
Uc-DanielleUc-Danielle
mgmt10 Don't let this slide. Fight it! That's ridiculous. [ more ]
Jan Dollar And they wonder why everyone hates insurance companies!! OK, I suppose that nobody wonders... I guess they are presuming that you actually checked into a luxury hotel, and was not admitted to the hospital by a physician? But, seriously, I think this is probably just an error in regard to your actual diagnosis, and how it was coded... Jan [ more ]
JillM Ditto - fight this one. Recoding might help. You definitely need to get covered for this since it is a result of the condition they are covering. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Takedown this week! what should i know?
L LisaB827
Av8erchic I would keep in mind, too, that you might not have all of the issues that you see on the message board here. I was so worried before takedown about everything that I'd have to deal with afterward, based upon what I was reading. I've not had many issues-but the ones I have had, it was so nice to be able to come here and ask if it was something common or if I needed to call the doctor. I'm 9 weeks post-takedown and have no complaints about having a pouch-other than that I am upset that I can't... [ more ]
D. Nocerino USE WIPES!!! Its been exactly 3 months after my take down and I still need them I cannot do toilet paper. Stick with the set diet and after a month start to play around with the diet a bit. If you have butt burn or itching at any time, berrier cream helps but sist baths with baking powder is heavenly and solves that problem instantly. The best of luck and have fun!!! [ more ]
LisaB827 Thanks Holly! What foods are the safest to try first? Pasta, bananas, and rice are the first things I would think. My surgery is tomorrow...I'm excited to be done with the ostomy but nervous about adjusting to the pouch. [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
feeling tied down
ihatethisihatethis
JillM I've had my ostomy for 11 years. I conceived and carried two babies with it. I hauled around toddlers who kicked my stoma, sat on it, poked at it when curious. Last summer I spent all day every day in the pool with the kids. I totally get the fear factor of the ostomy. But truly the only limits are the ones your mind convinces you of...feel free to PM me if you want me to share more details of how I live with and pretty much forget about, my ostomy. [ more ]
Cataja Is a colostomy way diferent then an ileostomy? [ more ]
skn69 Hi Ihatethis, Lots of compassion and sympathy for you, I know what it feels like to have your life constantly put on hold until something else gets fixed...you just have to keep concentrating on the longterm and try to ignore the day to day stuff...Liz is right, you need to rest and heal up a bit first...take some time to get your strength back...start out really slowly getting back to chores...give yourself itdy-bitty little goals like just one small thing to do/get done...tell yourself... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
frustration with people assuming I am well
L lab
Jan Dollar My husband and I have been together since we were both 15. I was diagnosed with UC, pancolitis, shortly before my 16th birthday and spent a month of my summer vacation in the hospital. It wasn't until nearly 40 years later that he said, "I finally understand what you have been dealing with all these years." What brought on this epiphany? HE was diagnosed with UC! And his case is pretty mild, confined to the sigmoid colon. Anybody who does not live this will ever truly appreciate how it... [ more ]
lovedby2 To add. Spooky you posted a very good point as well. Every time I'm at the hospital/Dr office I hear, you're only 31, you're young and that benefits you. Or, you're too pretty to be going through all this! What in the world!! [ more ]
lovedby2 I'm throwing myself a pitty party today. I'm tired and nauseated. The last 3 nights of getting up 7+ times. I take full advantage of the better days because when the going gets tough it runs me ragged and then it takes a few days to recover. And no, no one understand, even my husband, who tries to be compassionate about all this for me. Every time family comes over, ... You are getting over all this aren't you, you have color in your face! Or... So glad all this is behind you now!... And the... [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
possible bladder cancer?
BeckyMBeckyM
TE Marie I hope you have found out all you need to know by now and have a treatment plan. Not knowing adds to the stress of it all. I pray all will be fixed and that you'll have the joy of raising your children and grandchildren! You have a great attitude, keep it up. [ more ]
Donna H Becky, I just tear up reading about what you have been through. You have such a strong will and that goes such a long way. I am praying for you and your family. God bless. [ more ]
Not your average gal! I am sooo sorry, Becky! My prayers go with you in this terrible and difficult time. I can't imagine how you must be feeling. There is an extensive history of FAP on my father's side of the family, so I know a little something about it, and this was one of the reasons I had to have a colectomy. I am thinking of you, sending all the healing I can muster, and may you be surrounded with everything you need for support for you and your family. Susan [ more ]
See all 20 replies...
J-Pouch ForumsHelp! Need advice now!
rectal procidentia
K kk
TE Marie KK, I looked up "rectal proidentia" and it is a big deal, in my mind. Roughly it means complete rectal prolapse that leaves the patient incontinent. Or it could be caused by hemorrhoids. BIG difference. Pelvic Floor therapy was one of the treatments. Another thing that I didn't know about. Another possibility of something to add it to the "things that are not causing my problems" list. Did he discuss anything, like Pelvic Floor Therapy, with you? [ more ]
Scott F The attitude and mood get recorded because they are *sometimes* very important symptoms. Ideally they aren't about judging you! [ more ]
liz11 te isn't it funny to read that stuff. I've been collecting my records and it was quite amusing reading their "everyday" comments about me...pleasant, thin, outgoing....But Even the one that said i was "irritable" when a stupid resident and then fellow couldn't get my medical history straight for the life of them and I blew up at the doctor for wasting my time! [ more ]
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J-Pouch ForumsHelp! Need advice now!
occasional bright red blood ??
PouchomarxPouchomarx
Scott F Sounds like a possible hemorrhoid to me. [ more ]
TE Marie I've bled with cuffitis like this pattern. It's like the blood comes and then the pain gets worse with burning, cramping and frequency but not much more blood. Sometimes I don't have much blood at all and others I can have a stool full. If you don't have any other symptoms it's probably as Jan said. [ more ]
Jan Dollar If it was cuffitis, it would have been apparent on your scope. Plus, cuffitis does not come and go in the same day. More than likely, it is a small blood vessel that bursts, bleeds, then stops. Are you straining at all? Jan [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Starting IVF
J jpouch2008
jpouch2008 Thanks so much - sure nice to have support from those who can relate! I am trying to drink tons of water but can't figure out what/if any foods are suddenly creating such bad rectal pain so am starting low residue now...plain rice' , crackers, yogurt, etc Think I need some rectal meds, have read on forums about Canasa etc but seems you need a prescription. Will try to get apt but that usually takes weeks. Thanks for tips. [ more ]
clz81 congrats!! i would suggest you stop any bowel slowers (which you already did) and keep up your fluids! you never know when morning sickness will hit (if it hits), and it can be really hard to get liquids down. you would still be on the early end likely so while you are not having nausea...get in all the food and liquids you can! [ more ]
rockandroller For many with IBD, IBS, pouches and other related ailments, pregnancy is 9 months of misery. My sister had horrible diarrhea and cramping and pain the whole time. For me, it actually ended up firming things up and I felt really good most of the time (as good as you can feel that is). Just remember whatever you are experiencing is temporary, and I hope the scan results mean a healthy baby is on the way for you. [ more ]
See all 9 replies...
J-Pouch ForumsOstomy & Skin
Do you smell with an ostomy?
A Andreita
D. Nocerino Nope! I was really careful and took care of my ostomy and it was always great no smell [ more ]
liz11 no smells here. In fact when I had my very first ileo.. that was my fear.. that my dogs would be bothering with it. But never ever.. not even once... have they ever sniffed the thing. I now have three dogs and my 4th and now perm. ileo. No smelling here! [ more ]
Cataja I have 3 cats and 2 dogs...if there were any smell they would notice it...thats never happened. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Just had my appt. hope this new stuff works :(
M magsroo
magsroo I have fissures that cause me pain with every bowel movement. It actually spasms in that area and the pain can be unbearable. They originally gave me Nitroglycerin ointment to help heal the area but it burned like a mother and made things worse. So, here goes the next try of meds... [ more ]
TE Marie Darn, I hope it all works out well for you. I've never heard of that medication before. What is wrong? [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Perocet
L LisaT
Manchester I'm on 240 30mg codeine per month purely as titration to constipation. And 400ml oramorph for pain per month. [ more ]
Pouchomarx i have been on a low dose of Oxycodone 5mg to use as needed. I get qty=100 for 3 months. some days i dont take any, some days a few throughout the day. I have some painful spasms and all of the anti-spasm meds give me horrible blurred vision. cant see anything. [ more ]
TinCan I don't take pain meds on a regular basis, but I know what you are talking about relative to percocet. I have found that oxycodone and codeine are the only drugs I have used thusfar that really work for me in terms of pouch happiness. I was never in that much pain during or after surgery 1.5 years ago and had most of my supply of percocet left over. Whenever I am feeling bad pouch-wise, or am traveling and am not certain where my next bathroom stop will be, I will take a percocet (or... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
spondilitis and J pouch
M mari60
KiwiPoucher I am resolved to the fact that there will probably never be a cure for me. Not being negative or depressed, but just realistic. If all options fail and I end up bedridden again in unbearable pain I have made sure there is a way out. After everything I have been through and the years of suffering, I have legally made sure that my wishes with regard to treatment given to me in the future, or more appropriately NOT given to me in the event that I can no longer do things for myself and in... [ more ]
Lu31 Hi, I had UC when i was 15 and in my early 20s started having joint issues. Like others have mentioned as well, most of my tests showed "everything was fine" but based on my UC history and symptoms, it was diagnosed as sacroilitiis. My rheumy says there is a link between bowel issues and joint issues (only a bone scan actually showed inflammation). And actually, at every appointment with my rheumy, one of the first questions he asks is "how are my bowels doing?" For me, I take celebrex daily... [ more ]
Jan Dollar Might be a good strategy. Here in the US, often biologics may be initially denied coverage, but then approved if NSAIDs ahve been tried and failed or contraindicated due to side effects. Other than methotrexate and sulfasalazine, there really isn't anything else. Plus, sulfasalazine is mostly just for the peripheral arthritis. I've been on it for what seems like forever. My rheumy suggested I try tapering off of it, since I was stable. I was taking 3 grams a day. I reduced to 1 gram a day... [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Sore sore arms from infiltrating IVs
Uc-DanielleUc-Danielle
Pluot I infiltrated my own IV once right after surgery because my left hand felt "asleep" so in my post-recovery haze I kept squeezing it trying to "wake it up," until the IV totally infiltrated. I think the nurse was pretty peeved at me. Anyway, I don't think it was particularly severe but it did hurt and I found massaging it helped a lot. [ more ]
Spooky I was in the hospital for 5 weeks at one point with an IV the entire time. My veins were sore and enlarged for a few weeks after I was finally discharged. However, the pain wasn't severe. I agree that if you are having severe pain you should definitely get it checked out just to be on the safe side. I have a "go to" vein in my left arm, too. The last time I had a blood draw, the technician remarked that he could see "scar tissue" on the vein and said that I must have had a lot of IVs/blood... [ more ]
Uc-Danielle Ihh65- I hope that doesn't happen since one vein is my main "go to" when there is problems sticking me [ more ]
See all 7 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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