J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
I've got some cream the Apotheek gave me which helps with the itch & burn, IF it stays on. Seems the poo is leaking in tiny bits, which basically defeats the cream! Multiple sitz baths are helping. Trying to take it easy... Gin [ more ]
My Poor Gin, So sorry...I know what progress-hope-deception feels like...Can you get Aloe Vera gel with local Lydocaine over there? It really helps a lot to cool the zone and reduce some of the painfulness... Yes, once things start being used they start to hurt so go back to your sitz baths and squirt bottles on the bottom whenever you go and keep the area cool and clean at all times... Have you tried an ice pack on your bottom? Keep up the walking and get better soon. hugs Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
strange, why takedown in 3-4 months? didn't you have surgery a while back just after me? [ more ]
Thank you for all the very knowledgable replies, a lot to consider, which I didn't. Yes, I use disposable bags. I change the bag 4 or 5 times per day & I also dispose of the contents down the toilet. I change the flange & bag every 3 or 4 days; I'm not most people. [ more ]
Your J-pouch must learn to act as a reservoir. The small intestine that now acts as a j-pouch is originally programmed to constantly contract. It must adapt. The amount of output may be the same, but the frequency is Highly variable after takedown. On another note, are your Ostomy bags disposable?? Most people empty their bag in the toilet and change their wafer and bag every 2-7 days. Dan [ more ]
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J-Pouch ForumsGeneral Discussion
I am trying to get my son off humira and methotextrate. He is also on antibiotics chronically at this time which I think is what helps along with strict diet. We have started to taper the humira by going longer between shots. With both remicade and humira you can test the level - and with my son he had such a high level -- the doctor agreed to let us space out the shots a little more which is moving towards tapering off I hope. Maybe you should get a second opinion from someone at a... [ more ]
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J-Pouch ForumsGeneral Discussion
I hope you do well. I completed Comrades 56 mile ultra in South Africa recently. I hope to do Beach to Battleship ironman in October [ more ]
Awesome! [ more ]
Well done Tommyb, what an inspiration. You surely don't let not having a large intestine an excuse for not doing what you love. Good luch in the IronMan. Let us know how it goes [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Too add on to what Scott said I'd like to emphasize what I said about the medical studies. There are so few of us that what medical studies that have been done have not had the normal "control" group etc., as in "real studies" - they are closer to anecdotal ones. VSL#3DS is not the end all be all and without insurance I would look into alternatives - but not for long if they didn't help me maintain the current health that I currently have. I currently have to treat for pouchitis off and on... [ more ]
The level of scientific evidence for some probiotics is often not very strong. VSL does seem to prevent *some* pouchitis recurrences in reasonable studies. I haven't seen *any* real studies documenting the efficacy of S. Boulardi in preventing C. diff, so I wouldn't expect my doctor to necessarily recommend it, but I take it anyway. When you want to venture beyond solid medical science your doctor may not be enthusiastic or knowledgable. I don't think it's their job. If you've never had... [ more ]
thank you everyone for the input on VSL#3. I will discuss this with my Dr. I wonder why she didn't recommend taking one. I spoke to my GI about this and he says I don't need one. I'm also curious about the one mentioned for C-diff wonder why that was never mentioned either. I had C-diff 3 times within 4 months. Frustrating to know that I could have taken something to prevent it. [ more ]
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J-Pouch ForumsGeneral Discussion
pouch4wf: No I did have any issues when I had my bag. The BM usually don't come with urgency or incontinence (maybe 1 a week). I don't have cramping or blood. My guess is that this is normal and I need to let my body heal. This is a slow process. thanks for your input, I appreciate it [ more ]
MAS, are your BMs urgent?? Are you having any incontinence? Did you have any rectal symptoms like pain or urgency while you had an ostomy?? Do you have any blood with your BMs?? To have a very difficult first three months can absolutely be normal, but there is no reason not to be cautious at the same time. Recovery from take-down is a very broad spectrum of people doing very well right away, to other people needing several months for their bodies to adjust. At some point if there is no... [ more ]
ks1905 my dr wants to wait to see what the culture shows, I don't understand myself. I have had this UTI since April 26th the next day after my 2nd surgery to create the pouch. I waited two months from the time my pouch was created. That was on the recommendation from my surgeon. I had no issues or problems with output prior to take down. I am so frustrated! [ more ]
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J-Pouch ForumsGeneral Discussion
I am just 7 weeks post take-down and also have a lot of gas but I don't have any trouble expelling it. Some times I wish I did. lol It can be embarrassing to say the least. My surgeon told me it was normal to have more gas than with a normal colon. I remember that I also had a lot of gas for the first 2-3 months after my initial colectomy (2013) but it tapered off after a while. I am hopeful that this too will taper off. As for emptying the pouch, I read from a poster here that rocking back... [ more ]
I had a lot of pelvic floor pain for weeks, months after takedown. At first it hurt to even sit down. I don't know why. I had to sit on my side a bit to be comfortable. Katie [ more ]
The best way for me to release gas is to lie on my stomach. Not always the most convenient thing, however. Katie [ more ]
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J-Pouch ForumsGeneral Discussion
I you have a Vitamix you can make your own Almond flour, as needed out of raw almonds. This is true for any of the other's talked about. (Although you aren't doing sugar, you can make powdered sugar out of regular sugar for another example.) I was on a gluten free diet years ago and found this helpful because then you don't have leftover almond flour to use up. FYI - We also make our own peanut butter - don't know if that's on this diet or not. [ more ]
Has anyone tried sorghum flour? I see it in the gluten free section of the Supermarket and I read that it is gaining popularity in the USA, especially as an ingredient for gluten-free breads like banana or zucchini bread. I was thinking of retrying my banana bread recipe that calls for almond flour, this time using sorghum flour. Sorghum flour is about 1/3 the price of almond flour, and it is also cheaper than coconut flour, but I do not know what it adds to the quality of the bread except... [ more ]
10 almonds (12g) is ok but 20 almonds (24g) is high on FODMAPS! not much would better eating Gluten free bread, here is a recipe for zucchini bread http://glutenfreegoddess.blogs.../zucchini-bread.html [ more ]
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J-Pouch ForumsGeneral Discussion
I just had a fairly severe reaction to remicade after my first infusion. One week after the infusion I developed a fever as high as 102 that comes and goes, headache, stiff neck, rash all over my body, every joint in my body aches, swollen hands and puffy face. Ended up in the ER for 14 hours. I was told joint pain and rash are fairly common but this was not just mild joint pain. Anyone else have such a severe reaction? [ more ]
I was getting infusions every 6 weeks for UC. The only side-effects I had were headaches, and fatigue after the infusion itself. Good luck! [ more ]
I lost feeling in my arms and legs after the second infusion. It also made me very dizzy. Took 3 months to get out of my system. The two doses did get me into remission for 3 years. A small price to pay! ugh, never again, but lots of people have no problems with it. [ more ]
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J-Pouch ForumsGeneral Discussion
The symptoms disappear the next day, just as quickly as it appeared. But it happened once a week for the past 2 weeks. [ more ]
Sounds like a blocked tear duct to me. You should have it seen to by a physician or nurse practitioner. You could try warm compresses to the inner corner of your eye 3 times a day. Might help clear the duct if that is what it is. [ more ]
That's how my chronic dry eye started. Eventually both eyes were involved, with tearing, redness, swelling, pain. But, the left eye always is much worse than the right. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks Elmer [ more ]
Halo, there are a number of causes of pouchitis and a lot of studies done regarding causes / possible solutions for pouchitis. Pouchitis is inflammation in the pouch and can be caused by: Prolonged use of NSAIDs Bacterial / fungal overgrowth in the pouch PH imbalance in the pouch (which can affect the bacterial balance) Indeterminate UC / Crohn's disease (some people find they have ongoing inflammation more indicative of these two diagnoses) You won't know what is going to happen until you... [ more ]
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J-Pouch ForumsGeneral Discussion
The worst part about running to the bathroom 20 times in the hospital was unplugging the electrical cord from the wall and wheeling the IV in the bathroom with you when you are in a rush to get there....I don't miss those days. I got stuck on the burn ward on the 9th floor for a few days waiting for a bed on the 14th floor to open up. They are downsizing the burn ward and adding more private rooms for the surgery patients; they had all ready began the construction when I was there in March. [ more ]
As far as I know both the 9th and 14th floors have wards for GI surgical patients. I don't think there is any particular place for medical GI patients... when I was there not for surgery they stuck me in adult oncology (a place where when they ask if you've had a bowel movement today, they are expecting you to say "no," not "yes, 20"). [ more ]
AllyKat, I thought that Cornell has a floor for GI patients (like the 8th or 9th floor) but they are shared rooms, I've never been to Cornell for GI stays only for surgery and I highly recommend NYP Cornell for surgery besides the excellent surgeons there you get your own private room on the 14th floor. I always referred to my stays on the 14th floor as a vacation since the rooms are about the size of a hotel room and the view from the windows is excellent of the East River if you are... [ more ]
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J-Pouch ForumsGeneral Discussion
I hate to be the bearer of bad news, but I'm 6.5 years post takedown, and some days my gut still produces considerable noise, and this is not always due to gas or eating certain foods. Other days it's extremely quiet. I've had friends and coworkers comment before, though we've all learned to just laugh it off. But, there are certain things you can do. If you do have excess gas that you feel is contributing to the noice, you can try probiotics (I've had my best results with Align), or foods... [ more ]
I actually logged in just to post that exact question. Are there any strategies or methods to lower the frequency of the noises from our "new plumbing"? I can't put a finger on which foods cause it, but some days it will last for most of the day. I know it is most likely impossible to completely eliminate all noises, but any advice would be appreciated for my peace of mind. In a quiet classroom, meeting potential partners and it's a quiet atmosphere...as many of you have experienced, it stinks. [ more ]
When I had my first takedown my children were quite small and a favourite activity was to sneak into our bed early in the morning and listen to Mummy's tummy growl... Gin [ more ]
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J-Pouch ForumsGeneral Discussion
ok thanks jan. so my doc scheduled me in for what hes calling a dilator fitting. what can this mean? i already have my normal outlet dilator. does it sound like he found and inlet stricture from the defography? im getting a bit excited... [ more ]
Why is your surgeon a butcher? Pouch inlet stricture is not generally due to surgeon error. It is mostly due to inflammation. Jan [ more ]
I Hate My Surgeon. Butcher... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Yikes, I'm sorry to hear that. The urgency is getting slowly less, but I still can't move very much at all without having to run to the bathroom. It's getting very old very fast. I just want to be able to move around a bit! I keep reminding myself it's early days, only two weeks today from the second op, BUT because I was completely incontinent for the two weeks in between the two ops, it's been a month of this crap (pun intended) and I am REALLY tired of it all... Gin [ more ]
I had a pouch advancement back on June 22 2014. Did not have a stoma, reason I didn't have a stoma is because I had a tear in my small intestine during an emergency room visit for pouch decompression ( stool had backed up and wouldn't move) yeah it hurt, urgency was the worst and sometimes still is to be honest, I have a TON of gas issues that end up making me go to the restroom a lot. It's been so crazy my surgeon is going to do another pouch advancement. I'll have a stoma for a little... [ more ]
Thanks to both of you. This has been a month of heck, that's for sure. First op on the 26th, woke up without a stoma due to too much scar tissue and problems with reconstruction, had part of my pouch actually hanging out of my anus... Yuck. Only good news was that fistula was completely excised and the muscles in the sphincter and area were strong and not damaged. (Not that it made much a difference during those two weeks; complete incontinence is NOT fun.) Then the "trim & stitch"... [ more ]
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J-Pouch ForumsGeneral Discussion
da Vinci refers to a robotic surgical platform. If a lower cut is indeed possible, my guess is that it is due to greater surgical precision. [ more ]
what is the da vinci - how does that allow a lower cut? Thank you. [ more ]
Definitely walk around as soon as you feel you can, even if it's just a few feet. It gets the bowels going and helps recovery. I'm amazed that someone was back to work a few days after their takedown! Crap, I couldn't even imagine going back to work 3 months after! Lucky for me I stay at home with my toddler. Wow! Katie [ more ]
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J-Pouch ForumsGeneral Discussion
Hey guys, I just received a letter from my surgeon and attached to it was a copy of the letter he sent over to my doctor with his decision for surgery. On the letter he has written his decision to do the j pouch procedure, but he has also written that i have multiple hernias, on the incision and at the stoma site also :/ he has written he wont be using mesh and that due to this the failure rate of the repairs is higher...does anyone have any advice or thoughts on this...because my surgery... [ more ]
Thanks scott, thats what the surgeon said to that its better to do it this way around and that it can be done at a later stage, sounds like the logical way to go...and your definently right about life and its guarantees! [ more ]
Overall results are better *without* the mucosectomy. Life has very few guarantees, and surgery even fewer, but in all likelihood you'll do just fine. It's possible, if necessary, to do a mucosectomy later, but it's never possible to undo a mucosectomy. [ more ]
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J-Pouch ForumsGeneral Discussion
Been off antibiotic for three days and so far no recurring ... Hope it's for real! Doc said blood in urinary tract infection common in women my age... (53 and post menopause) Tami [ more ]
No Dawn, I took it before.... I really hope it's nothing!! [ more ]
Thank you Jan dearest! [ more ]
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J-Pouch ForumsGeneral Discussion
I feel for you and think your doctor deserves a big case of anal fissures himself. Has anyone elses doctor refused to give them pain medication for this painful condition? We have a zillion nerve cells there...... I've sat in hot baths, hot tubs, epsom salt baths, used heating pads, ice packs and I've ate liquid and soft foods only so that my BM's would be as loose as possible. I understand not taking NSAIDs as they promote bleeding. How much blood flow would be restricted if you got pain... [ more ]
Rebe, I already follow the FODMAP diet. I am sorry. I am in too much pain to be very coherent right now. [ more ]
My doctor will not prescribe painkillers to me for this. He said the painkillers restrict blood flow in the anal area and slow down the healing process. The rectal pain is too much for me to walk. I was wondering if there are any naturopathic options? [ more ]
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J-Pouch ForumsGeneral Discussion
The higher up in your GI tract the obstruction is (closer to your stomach), the quicker and more severe the symptoms will be. That is because when things get backed up to the stomach, nausea and vomiting occur more quickly and there is more pain. If the obstruction is near the pouch, then it takes longer for things to develop to the point of affecting the stomach. If it is a complete obstruction, as opposed to a partial obstruction, symptoms develop more quickly too. You should gauge your... [ more ]
Glad you are okay. I don't think you overreacted, given your history. That being said, sometimes having a partial obstruction is a reminder that we still need to keep half an eye on things. I had two brutal post-op blockages, then I had several partial with my ileo (none of which required hospitalization, thankfully). After my takedown, I went a few years with nothing and I almost thought they were a thing of a past, even though I was well aware I had adhesions and could often feel stool... [ more ]
Just got home from the Cleveland Clinic. The pictures from my cat scan never made it so he had nothing to look at. He did a scope of my pouch etc. and took biopsy and blew a bunch of air up my butt to the point I thought I would throw up from burping crazy. I am sure it was a partial blockage and I believe it is passing..... even the air seemed to help I think. Definitely a learning experience for me. I am undecided if I feel I overreacted but my last blockage was brutal (did surgery) so now... [ more ]
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J-Pouch ForumsGeneral Discussion
Lambiepie what does laying on right side or left side have an effect? [ more ]
thank you everyone for the positive feedback. It is great to hear this is normal. I will try the tips and hope it helps. I'm hoping to go back to work at the end of August, but with getting no or little sleep I'm not sure if that will be possible. I'm hopeful that the BM's will slow down in the night. For the most part my BM's are formed throughout the night but by 5ish they do become liquid. [ more ]
Unfortunately, your experience is fairly common. All the food from the day is ready to exit during the nighttime hours. Also, any inflammation or upset in your j-pouch due to healing or imbalance in your gut flora will be exacerbated at night. Meaning: you have excess gas and stool and can't sleep for very long. I really hated hearing it would just take time, but as you have seen during the day - it will get better. See if probiotics help you out any (ease into them - immediately more is not... [ more ]
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J-Pouch ForumsGeneral Discussion
yes Dr Remzi is the tops. he does 2-3 pouch revisions or ripouts a week. [ more ]
Dr. Remzi is probably most famous on the boards and took over from Fazio. When I was in the hospital my roommate had Remzi do his revision and he seemed pretty happy with how he was being treated. And walking around I met a person from Oregon and Texas who had come to the Cleveland Clinic to have Remzi hopefully solve their problems. [ more ]
Hi I had mine done in London Prof Tekkis in London Clinic trained under Prof Nicholls who helped pioneer the j-pouch with Prof Parks, so excellent! http://www.thelondonclinic.co....ofessor-paris-tekkis [ more ]
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J-Pouch ForumsGeneral Discussion
everything you describe is totally normal...i was told 6 months should get you to where you are good..in my case they said a year,then it went to 2 years and so on..but i fall into the 10 percent of patients who develop chronic pouchitis..and i still have issue of having to go after i stand up from time to time.. but most likely yours will just keep improving and before you know it you will hardly know you have a pouch...thats what they tell me!!!! [ more ]
I still sometimes feel like I have to go immediately after standing up. Until I started the cipro, I was having accidents. That was a long darn time of crapping myself. At first it was daily, several times a day, then slowed down to several times a week. I must have had pouchitis from the beginning. I'm still on cipro and no longer have accidents, just some leakage. Katie [ more ]
thank you everyone for all the great tips. I did switch to baby wipes and have noticed a difference. Thank you for the tip! My dr did prescribe 2 creams. One is lidocaine and the other is a compound mixture cream, both have made the BB managable. My BM's are slowly decreasing this past week 14-18 much improvement from 24+BM. I'm two weeks out from take down. For those of you who have had the take down, when can I expect the BM's do decrease and get to the 5-10 BM a day? My BM's have... [ more ]
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J-Pouch ForumsGeneral Discussion
I certainly prefer a gastroenterologist for most pouch issues, but not all of them have enough J-pouch experience to be adequate. [ more ]
Most Surgeons follow-up with their patients for at least a year. After that, the care, including things like pouchitis, fissures, pouch-scopes, can be handled by an experienced GI. Our GI has many patients with pouches and feels very comfortable. Remember, surgeons will always look at things from a surgical perspective first. In this case, they may first rule out surgery, then give less credence to the "medical" side of treatment. GI's will do everything medical possible before sending to a... [ more ]
Thanks for all the feed back. I see my CRS Monday...I will ask him about the Nifedipine. I never have had a Gastroenterologist. Do any of you have an opinion about the difference in the knowledge of a CRS verses that of a Gastroenterologist in treating conditions that arise with us poachers? Have been wondering for a while if I should have one. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Prior to my ongoing challenge with ulcerative colitis, I had never heard of a J-pouch. But, then again, I'm not a physician! [ more ]
It also hits home here , once went to an ER and we were going through my history a Dr asked me after i had mentioned i had an ileal pouch-anal anastomosis (IPAA) as i prefer to use this medical term, to my surprise she didn't know what it was then i had to explain that i have a pouch created, she asked me can she see it.lol Its amazing how many medical professions don'nt understand this procedure considering it has been developed since the 80s according to Wiki "The surgical procedure for... [ more ]
I think we can all relate! My allergist (who herself is quite familiar with j-pouches, having a sister with Crohns) is currently on mat leave and she's had another allergist fill in for her while she's off. I went in for my scheduled follow a up few weeks ago and since it was my first time meeting the doctor who is filling in, we went through a brief history. I mentioned I had a colectomy and j-pouch and she looked both concerned and perplexed. I quickly explained what a j-pouch was and why... [ more ]
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J-Pouch ForumsGeneral Discussion
Excellend post, Gin. I am SO glad to hear they were able to excise the fistula completely. Great news. And glad you are finding blessings to count at this point! (BTW, I totally agree with you on the hummus. I actually began calling it my "daily medicine". Right now, it creates just enough gas to clear out the system ) [ more ]
It isn't always easy seeing and being grateful for what we have. Thanks for sharing yours. Puppy videos are the best! [ more ]
Hi Gin, So happy for you that you have found some joy in post-op recovery time! You are a real champ! Yes, I do remember that first shower...woohoo..I cheered myself on and loved every drop...never took a shower for granted again. I missed a lot too with all of those darn surgeries including the last 'all inclusive' business weekends in some really great countries that hubby was invited to and family weddings for people I actually did like. Be careful with that stoma infection, they can be... [ more ]
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J-Pouch ForumsGeneral Discussion
I must be one of the few. I was never fatigued. It worked wonders and I was on it for a bit more than a year. I was never tired from the infusion. They would give me a shot of benadryl and that would wear of after four or five hours and I was fine after that. Surprised to hear what the side effects were. Richard [ more ]
You do have a point there. It used to be that you absolutely could not go back to Remicade after a hiatus because of antibody formation, but that has sort of fallen by the wayside, as many people have been able to resume it. But, in your case, I would suspect that you already have some antibodies formed, and that is the reason you react. So, you probably could not resume it later. I imagine, sooner or later, it will escalate. But, as long as you are willing to deal with it, that certainly is... [ more ]
When I was on Remicade I used to feel extremely fatigued after an infusion. I would sleep for an entire day and then it would gradually get better over the course of 3 days. So I know how you feel. My mom is on Remicade for her RA and she gets the same way....granted she's 82. But she's always wiped out after an infusion and bounces back in a day or two. Not sure I believe your dr.'s 1/500 people statement. I have been reading long enough on the UC forums to know many, many people have... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Glad to hear good news about Dificid! Yeah, I know this was an old thread, but there was a new response to it. There are some much less expensive brands of S. boulardii than Florastor, on Amazon, if you're interested. Jan [ more ]
This post was from 2 years ago. I've been on multiple antibiotics since for sinus infections and now pouchitis. I take Florestor and Align with the antibiotics spaced apart! and never had c diff again so far. Dificid is the drug that killed it in 2 doses. So side effects at all. [ more ]
Cipro ABOLUTELY promotes C. diff growth! So, suspicion should be high. Ally, VSL#3 does not necessarily retard C. diff. Once you have had it or are exposed to it, the spores can lay dormant for a very long time. You do not need recent antibiotic exposure for it to activate. Just having your resistance low can do it. It is not your fault. At least now you know what is going on and can treat appropriately. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
What enzymes are lost from colectomy? My understanding is that enzymes are formed in the mouth and pancreas (excreted into the upper small intestine). Or, are you thinking of the possible B-12 malabsorption (which occurs in the terminal ileum)? We can be prone to that. Jan [ more ]
Here is another thought what about the enzymes we lose when having a colectomy.Could your body be deleted of them, causing your fatigue. Cassiecass [ more ]
Just another thought Have they tested your Vit D hormone level as well as all vitamins.Maybe you have malabsorption woes and dont even know it GODD LUCK Cassiecass [ more ]
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J-Pouch ForumsGeneral Discussion
Inflammation of the retained rectal cuff. Like UC in that little rim of rectum. If there is bleeding, it is most likely cuffitis. Jan [ more ]
Jan what is cuffitis? [ more ]
You can use up to 8 Imodium a day. I needed that dose for years in order to function. But, I did have undiagnosed cuffitis. Silly me for putting up with it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I'm guessing we'll never get the data, Jan. Antibiotic usage is too variable to conduct a meaningful clinical trial, I think. I agree completely about S. Boulardi, since the antibiotics don't kill it. [ more ]
In my mind, taking S. boulardii with antibiotics makes sense because it retards C. diff growth. Most probiotics are not useful for C. diff, and if C. diff is what you are worried about with antibiotics, then you should target your approach. Still, there is no harm, and may be some gain by using probiotics with antibiotics. I just don't think the data is there supporting it. If anyone's got some, I'd love to see it. Jan [ more ]
i am with scott on this one..maybe a guess on drs part when they say take probiotics when taking antibiotics.. it is worth the cost to me rather play safe than sorry when it comes to dealing with the bad bacteria..however,it was suggested to leave between 2 to 4 hours in between..i leave more time still probiotics in morning antibiotic at night..again just trying to cover the bases.. [ more ]
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J-Pouch ForumsGeneral Discussion
Your doctor is wrong two ways. As Liz writes, it sure could be C. diff pouchitis, or it could be "ordinary" non-infectious pouchitis. The lack of a fever means very little. I'm guessing that when you write "VLC antibiotics" you mean "VSL probiotics." If this is your surgeon, it sounds like you need a gastroenterologist, a stool test for C. diff, and a course of (probably) Flagyl. Good luck - doctors who know less than they think they know are a PITA. [ more ]
Sorry, your doctor is wrong (and kind of insensitive in my opinion). You've described symptoms that are just as bad as when I've had C. diff pouchitis. You should have a scope and a stool culture for C. diff. Unless you have food poisoning (how long has this been going on?), I would bet it is pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
I have read your posts through the years and your medical issues seem immensely complicated. I'm not sure if you are suggesting that Cleveland Clinic does not deserve to be number 1 on J pouches or number 2 overall because they cannot fix your issues, but clearly there is not always a simple fix for everyone's issues. There certainly hasn't been a simple fix for my chronic pouchitis issues, but I believe that I've had the best possible medical care in my area of the country, which has been... [ more ]
what does that really mean though?, i had mine done at Cleveland Clinic and have had nothing but issues and surgeries since 2008. [ more ]
mayo rated 1 and cleveland two but if they were more specific ..jpouches..cleveland is number 1 [ more ]
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J-Pouch ForumsGeneral Discussion
My heart go out to you to go back to the bag is my worst nightmare. And dame near a game endear. [ more ]
will do Mystic, and thank you jan, to be honest when i was told this it was a mix of frustration and relief, a relief because all these troubles go away for the time i have the ostomy, she said i can keep it for as long as i feel like i want to..i dare say i may roll with it if i have my life back. [ more ]
My best wishes to you. I know you have been in pain and I hope this resolves it. And least starts you on the right path . Keep us updated. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for all the responses. [ more ]
I get better results from Metamucil than Benefiber (or at least that's how my limited experiment turned out). Some folks use the Metamucil capsulse, which have no flavor, but I didn't find that they dispersed well enough in my system. [ more ]
The unflavoured Metamucil mixed in with my morning OJ is really not bad at all. Really! You should try it. I've been doing it for 18 years now. C-jay [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
so i saw my surgeon this morning. there is a very small sinus tract at the end of the pouch. he had another feel inside and it seemed normal. he said that this was picked up because of the mri pouchogram, which is a relatively new type of scan, and that in the past they may have even done takedown already. but its good this has been picked up. he will have a look inside the pouch in the next week or two, under anaesthetic, and if necessary open up the tract to let out puss, or if its healed... [ more ]
so my surgeon got in touch to say that there is a tiny leak which is a surprise as I am well otherwise. he said this may delay the reversal and he might to a quick examination under anaethetic soon to check everything again although he said it felt ok in clinic when he saw me last. so hopefully this is just a minor setback and not something that will have long term implications? [ more ]
Pouch leaks are not as simple to find as you might think. I know it is worrisome to know that they are scrutinizing the films, but a tiny irregularity might be a leak, or it might be nothing but normal variation. That is why they need to be sure. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Good answer! If they don't work, they don't work. Hope the Beano keeps working for you. Jan [ more ]
Hi Jan, Good question. I tried both benefiber and citrucel. Doesn't seem to bulk up for me. [ more ]
Why not just take a fiber supplement that does not cause gas? Or did you already try that? I had gas issues with Metamucil too, but not with Citrucel or Benefiber. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Mine was loud too. And it was loud the entire time I had it! Can be embarrassing at times. [ more ]
Still really loud. I'm glad I'm not in the 4th grade anymore, because everyone would be laughing at me... [ more ]
Right now just Percocet. Had the IV with the dilaudid pulled last night. [ more ]
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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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