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J-Pouch ForumsHelp! Need advice now!
Accidents at night while sleeping.
MM marvin's mom
Louisa I find that it is more common for me to have accidents during the night if i take a stronger medication to help me sleep. I also use Gastro Stop of a night to block my bowel so i can have a better sleep at night. [ more ]
jangler I agree with Marvin's Mom, I also use sheets of toilet paper each night and rarely have any trouble. [ more ]
jhills I second all the above answers and add to this….when everything is working as it should and I don’t stop eating at a certain time at night- this will happen. Usually stop eating 3-4 hours before bedtime. Eating all my calories in an 8-10 hour window and then resting my intestines the remainder of the time is a must for me too. I truly hope you figure out your system. [ more ]
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J-Pouch ForumsHelp! Need advice now!
yellow crap
FM Former Member
Former Member thanks for your reply news. will keep update. be well. dream safer. [ more ]
New577 When stool passes thru me quickly, it becomes lighter in color almost yellow sometimes. when I have a a lot of gas my stool floats to the top of the water. although it seems weird, I do not think anything abnormal is going on. my body can have different experiences after every BM. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Straining and Back/Leg Pain
Rob McLorinanRob McLorinan
NikiasVW Hi, I'm experiencing similar issues, Also think it still might all be connected, the hernia and the pressure on the nerve from all the straining? How are you guys now? Kr [ more ]
Rob McLorinan Could be @Winterberry I am looking into it. Funny how I often look for connections to the pouch. Possibly not related. [ more ]
Winterberry Rob, do you think it could be your sciatica nerve? Google sciatica and see if anything sounds like the nerve back there. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sweet corn
B Blairisking
SteveG A laxative like Miralax was also often mentioned here. But you need do be carefull with dosage, as it produces additional diarrhea and helps to clear the bowel (only in case that you can still have bowel movements!). So drinking enough is also advisible then. [ more ]
Blairisking I’ll try both. Thank you for help really appreciate it [ more ]
SteveG If fluids are still passing through, you may also stay on a fluid only diet for two or three days to help clear the partial blockage. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fissure or fistula
JA Joey A
Joey A I’m sorry for your wife. It’s one thing to have pain, but another not knowing where it’s coming from. Good wishes to you. [ more ]
SV2022 Good Morning Joey the pain you are describing is what my wife is experiencing she has had her pouch for 29 years. She has intolerable pain every day she just had a MRI earlier this week hoping to see some cause like a fistula or fissure but nothing. [ more ]
Scott F By meticulous treatment I mostly meant a dedicated effort to keep stool from spending any time in the fissure (or fissures) so healing can occur. Perhaps a sitz bath after every BM, use of a bidet, local treatment with nitroglycerin or diltiazem, and patient persistence. In difficult cases Botox injections are sometimes used. A proctologist can help ensure that the diagnosis is correct, and may be more familiar with the full range of treatment options. [ more ]
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J-Pouch ForumsHelp! Need advice now!
New J-Poucher here, would love some advice!
CotDogCotDog
CotDog Hi, thanks for the reply. I'm filled with optimism already from this post - I know it may be a long road but I'm sure I'll get there. As you said - I guess its all just 'figuring it out' Thanks again! [ more ]
CotDog Hi, thanks so much for replying. That's filled me with optimism! Maybe I will up the loperamide a little and also the steps thing is something I will have to improve on, as 10k steps pre-surgery was pretty much a daily thing for me. thanks so much again! [ more ]
CotDog Hey, thanks so much for replying! I used to always try and keep to a low carb/sugar diet when I had the bag and found this really helped with my output with that. I think that will be the next thing I try with the J-Pouch, as I have slacked quite a lot since takedown surgey in regards to diet. I will also try two loperamide before bed and see how that goes. Thanks again! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemochromatosis and Anemia
GaylaGayla
Maverick Plus My doc prescribes Ferralet. It is an iron supplement that does not upset the stomach. It is a prescription and a bit expensive ($80/month), but it's worth it. [ more ]
tf I have been anemic with low red blood counts since my diagnosis of uc & then Jpouch. My hemoglobin hemacrit & ferritin levels are mostly just under the normal range. Recently my counts are going lower & was given a 324 iron pill & I was sent to hematology. The pill gave me severe stomach & rectal pain. They say infusion would work because pills don't absorb?? My GI Dr. Is ordering a small bowel video camera test to c if there is a bleed in small intestines. Has anyone had... [ more ]
Scott F Some folks have good luck with Vitron-C. Reportedly the vitamin C improves the iron absorption. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial Obstruction-what to do/eat?
M msh98991
Maverick Plus Thanks for letting us know what is going on with you. Sorry to hear you have no relief yet. OK, my symptoms were constant bloating (very uncomfortable), watery and somewhat explosive diarrhea, and pain on my lower left when palpated. I hope you get some answers soon. [ more ]
msh98991 Hi Maverick, Thanks for checking in! I’m glad your meds are helping you! It sounds like you got an accurate diagnosis and are on the mend. They are still running tests on me. I had an MRI of abdomen yesterday. First test they ran was an ultrasound and for whatever reason they couldn’t get a good look at my gallbladder (it was blocked) so we’re hoping the MRI tells us more. From what the doctor could see on the ultrasound though he didn’t think it was my gallbladder. I tend to think it does... [ more ]
Maverick Plus Peggy, Am I correct in assuming that your gallbladder wasn't the problem? Still more tests? As I said earlier, I had similar symptoms, and all of my tests were negative, so the doc suspected SIBO. I think he was right because the doxycycline is working wonders. Has your doc ruled that out? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis Vs Pouchitis
A Aray
Scott F Both pouchitis and cuffitis can cause pain and urgency. Cuffitis acts more like UC and is more prone to bleeding than pouchitis, though both can bleed. As New577 wrote above it’s best to get a proper diagnosis, and symptoms alone may not be enough to tell them apart. [ more ]
New577 Pouchitis, cuffitis, SIBO. All three share similar symptoms. I have had cuffitis and SIBO, but not pouchitis. Symptoms I have had include frequency, spasms, blood, and a constant sense of need to go (tenesmus). I am sure the pouchitits sufferers will respond, but a pouchoscopy with biopsies will reveal the real issues and provide a sound diagnosis for treatment. pouchitus and SIBO are treated with antibiotics and cuffititis is usually treated with mesalamine either oral or suppositories. All... [ more ]
Petey12 I'm so sorry no one has responded to this because I have the same question [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchoscopy Routine?
M MMOB
MMOB I appreciate your thoughts, but it is no longer a concern. I had my pouchoscopy a few weeks ago and everything went well. Thanks again. [ more ]
Hark I had my surgery around the same time as you (2006) and since then I have had a pouchoscopy every year. From what I've heard most docs try to wait 2 or 3 years between scopes, but that hasn't been my experience. Try not to worry, it's a good thing. [ more ]
CTBarrister Glad to hear that you have a handle on what is going on and are taking steps to treat it! The biopsies should be fine. I have had mild to moderate pouchitis for 28 years and it can be lived with, but going forward you should probably have annual scopes, until further notice. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gallstones, Stent Surgery and Scar tissue
K kirsten
Hark I had lots of issues with scar tissue, pretty regular blockages and eventually surgery due to them. They took out my gallbladder, no problem. Didn't even need a specialized gastro surgeon [ more ]
kirsten My first doc was Dr.Peter Marcello when he was at the Cleveland Clinic. My second pouch was done by Dr. Sclow who is now at Mayo in MN. Your advice rings true. Alas, now I am in Utah. [ more ]
Pals I do not know where u live but I would go to Cleveland Clinc or Mayo in St Paul and do what they say. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mouth ulcers/cold sores
C Chopkins
Sara Marie ❤️
Chopkins Thank you for your responses. We appreciate it. I am trying to get her in with my Gastroenterologist but it's a long wait. I will tell her about azathioprine. I also still get the mouth ulcers and inflammation in the small intestine, pain in anus and joints. I was on remicade and now we are trying Entyvio. Fingers crossed that it works. Again, thank you 😊 [ more ]
Andreita I was diagnosed with uc and when my colon came out, pathology said it was uc. I have frequent mouth and genital ulcers. I keep mine in check with azathioprine. Yes I have my colon removed but my auto immune disease is still active and attacks my mouth, anus, genitals and also my joints. I'd have her evalued by a physician and given treatment. Lidocaine can help to numb the pain in her mouth for a bit until the ulcers heal. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Small bowel obstruction
D DJJ2019
SeattleJane Hello all, I am newly home last Wednesday from the hospital after *another* SBO, but this one was different enough I want to post a few notes about what was "new" in the hope that it is helpful. 1) An SBO diagnosed on the same day of having lots of diarrhea? Yes. I was alerted late evening to what felt like an SBO by the classic waves of excruciating abdominal pain, BUT I had 3 major bouts of diarrhea earlier that day so kept second guessing myself. How could it be possible to huge amounts... [ more ]
grateful As always, thank you, Scott.😇 [ more ]
Scott F Liquid IV is a commercial oral rehydration solution. It’s sold as a powder to mix with water. It’s sweetened with allulose, which is natural and they say doesn’t raise blood sugar like other sugars. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Weak Pelvic Floor
Mema 1Mema 1
Mary O I’m not experienced enough to know that but since it’s thought that 3.5% of the population has the allergy, it seems like it should. As we all know, when we have one autoimmune disease, others may sneak in there too [ more ]
Sara Marie Ah! Black tea and wine always makes me think of the tannins. I thought that was what caused the sensitivity, but maybe it's this other thing! If I ask for a patch test at the allergist, do they automatically test all the potential most common allergens such as this one? [ more ]
Mary O It sure is a bit complicated. It is actually tomatoes, black tea, red wine and lots of other things that can be consumed, whether one ingests it whole or as an ingredient. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vitamin D3 absorbing it
Pilot DebbyPilot Debby
lablover My DH takes off his shirt on walks to get Vit D. He also has drops that he puts on his food. [ more ]
SteveG I guess there is a problem absorbing it, because the dosage I need is much higher than the recommended one for healthy people (800 IU a day here in Germany). Vitamin D is absorbed better if you have something fatty together with it. It's a liposoluble vitamin. [ more ]
CTBarrister The normal range on Vitamin D is 30 to 100. Keep in mind the best natural source of Vitamin D is sunlight and, for most people, 30 minutes a day maintains a sufficient level. People who live in rainy or cloudy climates may suffer from Seasonal Affect Disorder which is related to vitamin D deficiency and causes mood swings. I take 5000 iu Vitamin D daily and that keeps my Vitamin D in the normal range which is 30-100. I get blood tested quarterly due to both Remicade monitoring and thyroid... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Antidepressants
P Pouch2021
lclassen I've been on so many over the last 25 years! Hard to remember them all. In a general sense, I stick with something that is NOT coated or time release. I have had success with capsules or tablets that absorb in the stomach or small intestine. Currently on Lamictal (lamotrigine), Trazodone, and Trintellix. I have also been fine with Klonipine (for anxiety), valium, zoloft. The one I couldn't take was Pristiq... came out same way it went in (lol). Hope this helps. [ more ]
Kangaroo I take celexa and I don't think it has caused any issues with my pouch. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Confused
C Charlie1026
Scott F How sure are you that the oral mesalamine make you bleed? That’s an unusual side effect, and it can be hard to tell what’s causing a problem. I do suggest that you get the inflammation under control if you can. It’s fine if you can do that with diet, but most people need medication to control cuffitis. [ more ]
SteveG Those suppositories didn't help me either. But that's individual, you need to try. If you feel your diet has a positive effect you should stick to it and try something different now and then to confirm it is still necessary. Budesonide should also be effective against inflammation in the pouch / cuff area, it is a locally acting cortisone. I've been taking it for more than 10 years now for chronic pouchitis, starting with the usual dose of 9 mg a day and reducing step by step to a low dose... [ more ]
New577 Hi, I had high grade dysplasia in my rectum and therefore I needed to have a two step procedure. GI told me that if I did not CRC was next. Not surprisingly, Cuffitis was next and pretty quickly since the cuff is the 2cm remnant of the rectum. I’ve been told that unchecked inflammation will eventually lead to dysplasia. Since I am adamant about no further surgeries, I take the canasa suppositories daily to keep the inflammation in check. If Canasa did not work it would be biologics as I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
3 things. 1) Feeling like I can't evacuate. 2) Pushing too hard. 3) By pushing too hard can you damage the J-Pouch
BS Ben S.
lclassen I've had the same issue. My GI referred me back to my surgeon. Surgeon sent me to pelvic floor Physical Therapy. They also suggested using something called a "Squaty Potty". It's basically like a step stool to put your feet on while you go. It helps to put your body in a better position for the pouch to empty and eliminate the feeling of needing to push. Just a thought. [ more ]
AMB Glad to hear it. Hope you'll let us know what you learn. [ more ]
Ben S. I'm going this Friday for a pouchoscopy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture Dilation
N NB2022
CTBarrister Thanks for posting that Scott. I was not aware of these devices. The prior post had referred to "Hager" which coincidentally manufactures digital tools: https://hager.com/intl-en/support/digital-tools I take it from your post that Hegar and Hager are different companies making different things. [ more ]
Scott F Hegar dilators are graduated rods used to dilate accessible orifices (e.g. a pouch outlet stricture) https://en.wikipedia.org/wiki/Hegar_dilators Digital dilation is dilation with a finger (digit). Sometimes the procedure goes a bit too far, and the recovery is challenging. I prefer gradual, repeated procedures over days and weeks, but that’s got its own issues. [ more ]
CTBarrister So was this a strictureplasty? Was scar tissue removed and was the anal sphincter cut? I am still not clear on exactly what was done. Hager is a maker of digital tools. I am not aware of a procedure by that name. I assume that prior to this procedure you were unsuccessfully dilated? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding from meloxicam
DB Dr. B
Scott F Maybe the backup doctor would talk to you on the phone? This really doesn't require a physical exam. [ more ]
Dr. B I called the Dr's office, no appointments available by backup dr for two weeks. By then, my Dr will be back. I will look into the steroid enema. Thanks [ more ]
Scott F I’m not aware of an authoritative answer to this. If it happened to me I think I might go straight to a steroid enema, perhaps budesonide or cortenema, to try to calm down the inflammation. Perhaps you could get a prescription from an Urgent Care, if you lucked out with the practitioner you got. There’s really no one covering for your doctor? [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch construction in a week - getting cold feet about my surgeon
L liza_s
Kushami ❤️
Kushami Asking about how many j-pouches the surgeon has done and how long they have been doing them for is a good place to start. You could also ask where and with whom they trained on j-pouches. But the problem with asking these questions is that there is no way to verify the answers. It is unlikely that surgeons would lie, but that’s not entirely comforting when you are about to have major surgery. You could search the surgeon’s name here and in other support groups, e.g. Facebook, Reddit. Or just... [ more ]
lablover As I recall (I think it was 1990), my DH's colon doc recommended the surgeon at GW hospital in DC.: Dr. Orkin. My husband felt pretty comfortable with him. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Air coming from old stoma site
R Robbiusd
Sara Marie Yes, my doctors assured me that the cancer would come back if I didn't remove the whole colon, but they didn't really know that. They were just trying to be authoritative, and were doing the best they could with the limited knowledge and experience they had. [ more ]
New577 I think alot of us wish we did things differently. Because my dysplasia was in my rectum, they insisted that I have a total procto colectomy. I said why not a low resection? No no they said as the UC/dysplasia would migrate to that area and I would be back the same issue in a few years. but given I had a fistula at the stoma site that leaked and almost killed me, I wished I never had any surgery and just monitored the dysplasia. But the doctors were so afraid of cancer I submitted. btw, the... [ more ]
Sara Marie I had severe yeast throughout my alimentary canal when they went to reconnect and sew the stoma shut and my tissue was too weak to hold the stitches, so weirdly, they just left it to heal on its own (even after the yeast was treated) and put me on total parenteral nutrition for a while. The stoma wasn't infected, but it still leaked goo for quite a while, and I just had gauze taped over it which I had to change frequently. It was quite surreal. It did heal up eventually, but I'm not sure how... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Burn
R Rsawyer
SteveG A fissure gets painful when things get stuck inside (during a BM), for example little undigested peanut pieces. Fissures tend to produce a wrinkle in front of them, toward the outlet. That makes them even more prone to contamination. If you identify the fissure soon and keep it clean, it can heal. People with a colon and formed stool should keep their output soft, so the anal canal is not stretched too much and the fissure breaks open again. There are also special creams for such fissures. [ more ]
Sara Marie When a fissure does heal, how do you know? What's the difference between clearing and healing? I have had them (or maybe painful hemorrhoids?) off and on over the years. [ more ]
SteveG Linda, if the pain goes away when you do an enema this is a clear sign for a fissure. You may use clear water or add a little bit of salt to make it isotonic, there is probably not much difference. People here often recommend to use an empty fleet bottle do do the enema. But remember that this is only a quick fix to clear the fissure. You are dealing with this issue for such a long time now, that there is scar tissue at the fissure. This won't heal by itself any more most likely. That's why... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BAM
E Ezzy
Scott F If the burning is external then preventing it with a barrier cream *after* every BM works quite well for many (and did for me). If the burning is internal then a topical may not be the best approach. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unable to digest protein . Protein Intolerance?
M meghspd
lindaslankard Thank you. I’ve tried most but haven’t tried all. But I will. Thank you very much! [ more ]
Sara Marie Aloe applied to the anus and a little inside has really helped me, depending on the kind of discomfort: it speeds healing and provides immediate relief as well. I often take aloe internally (juice or caps) as well to help with healing from the inside. If the burn is from frequent stools, Calmoseptine helps me. Also, psyllium powder, 1 tsp with 8 oz water, before each meal helps the stools be better formed (but not hard at all-because of the 8 oz of water) and provides a mucous layer that... [ more ]
lindaslankard Does anyone know what to do about severe burning and spasms after bowel movements. It’s like when you get up to walk, your poop just instantly goes to your rectum and it starts pressure and severe burning I mean so bad it brings tears. Anyone can help?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Serotonin and Paxil
S superfannypack
DJJ2019 This has been a battle for me ever since my first surgery. SSRIs have always given me pouch issues mainly cramping and loose watery stools. I have not seen any studies on this, but I would not be surprised if our serotonin is messed up, and that we are more prone to depression because of it, hence many of us needing anti depressants sometimes. I hope your withdrawals level out. I’m at the stage now after a bad bout of depression that I may just stay on them for life. [ more ]
KennyJG44 I wish there was more information out there regarding this sort of topic. I had my JPouch surgery almost 20 years ago, and have struggled with depression ever since. I am sure there is some sort of genetic pre-disposition, but I would have to believe that removing the organ that produces 90% of the body's serotonin would be problematic in this regard. I wish someone would have mentioned that all those years ago. To this day, I rarely, if ever, find information/articles that focus on this. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post takedown Incontinence issues
P Philly
Philly Much appreciated New577 and Scott F Everyone really came through with these replies and suggestions. I’m elated to be part of this community and look forward to offering my experiences and advice to new pouchers like myself I just got the enema supplies, so we’ll see how it goes lol. I’m willing to do anything that will help! Thanks again y’all! [ more ]
Scott F The easiest way to do a warm tap water enema is to buy a brand-name Fleet enema, empty out the irritating solution, and replace it with warm tap water. I've only done this as a prep for pouchoscopy, but as New577 wrote it won't do any harm with moderate use. [ more ]
New577 My surgeon recommended warm tap water enemas early on for other reasons. They helped empty me out when I took too much Imodium and it constipated me. So I would say it’s something that cannot hurt you and worth trying. [ more ]
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J-Pouch ForumsHelp! Need advice now!
5 weeks post surgery, 15-20 times bathroom trips
S SurvivingUC
JanWillem Lot of solid advice already, 1 more: Questran helps if your burn comes from gal salts. Psyllium fibers, barrier cream and a bidet (wc-shower) are life savers as well. [ more ]
Maverick Plus It took me 2 years before I felt I had a "new normal". I was fortunate to be able to take a 4 month leave of absence. Perhaps you will need more time off if your job allows. I hope your recovery improves, but it does take a lot of time and patience. [ more ]
AMB Your regret is understandable. I spent many months questioning why I'd opted for the jpouch. The early days are just miserable with burning and exhausting frequency. I thought I'd never eat normally again or sleep through the night. That lack of sleep makes working very challenging, even if, like mine, work is remote and the bathroom is close by. I just passed my two year takedown anniversary -- two days ago. Now there are many days that I hardly think about this unique anatomy. I found the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't fully empty
O Omyst
Jfill21 Do something simple first. Stop pushing. Doing so could get your pelvic floor muscles working against each other and you can get anal congestion. I’m experienced unfortunately. Use Metamucil and give your pelvic muscles something easy to move. Oatmeal works for me. I also bleed when I push. That area is already “friable” as I was taught, and easy to pop a hemorrhoid. Plus, I use Ilex cream and push it in deep which also helps me to relieve anal congestion. [ more ]
Maverick Plus I was thinking it might be small intestine bacterial overgrowth (SIBO) as AMB mentioned above. I guess it's time to see your GI doc. [ more ]
AMB I had very similar problems right after my takedown. Mine was caused by a mucosal prolapse - sort of drooping/folding of the pouch lining made worse with straining, the resulting which was 80% narrowing and incomplete emptying. Treated simply with endoscopy. Tends to recur, and it goes hand in hand with bacterial overgrowth, so on maintenance antibiotics. I also had the defecogram Scott mentioned in order to diagnose. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Awareness of stool after takedown
M Melsp34
Scott F The immediate post-operative period is terrifying. Everything is a mess, pain clouds judgment, and nothing seems to work right. It’s natural to imagine that things will always be messed up - I sure did. Healing is very powerful, but time and patience are essential. Try to take one day at a time, and try to notice the small improvements instead of the remaining problems. [ more ]
Melsp34 Thank you everyone for you kind messages and advice. I think I’m just wondering if it’s going to get better at this point, she is 6 days post op and still in a lot of pain and still not even feeling any sensations in her bottom. I’m also worried what these these sudden adhesions they told me about mean for the future and I’m sad that she’s been left with a huge ugly scar that she hasn’t even seen yet. [ more ]
Doug K Your family and daughter have been through a lot. The good news, young people very often do the best with JPouches, their bodies adapt better than older people. I would try not to stress out about control so early in the game. The first week I was liquid pooping just siting around and I did not feel much either. Just came out. I had an ileostomy for about a year before my takedown. Also, she is only one night post operation! If I read that correctly. It’s a pretty big operation. She will get... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis
heverhever
hever Thanks for your replies The specialist didn’t seem to think I had diversion pouchitis, I was contacted today by the Infusion team to arrange for my first treatment- feeling anxious and just hope it’s ok, they said it’s lifetime treatment 😬 This disease never ends Im certainly going ask about your suggestions regarding diversionary pouchitis at my next appointment Thanks again all Heather [ more ]
Scott F Doug K’s suggestion of fatty acid enemas could be perfect for you. Adhesions can cause trouble whether the pouch is connected or not. Is reconnecting the pouch an option? There is also the option of removing the pouch, though that’s best done by a surgeon who’s very experienced in pouch removal. [ more ]
Doug K You could be suffering from Diversion Pouchitis. Colons or Pouches that get diverted from the fecal stream sometimes got sick because they lack the nutrients that they would normally get from the fecal stream. You can get fatty acid enemas which bathe the area compatible with the nutrients lost upstream in the appliance. For me they cured my diversion Pouchitis in a week. I use a formulary in LA for fatty acid enemas. Good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch placement in relation to bladder
T Toona17
Kangaroo Hi Doug K, I was on Elmiron for about 18 years. I went off of it a couple years ago because of the permanent eye damage it caused. (This type of eye damage is only caused by Elmiron and leads to loss in eyesight). It's now coming out that it also causes IBD. I think that's what happened to me. I had a very strange and sudden case of IBD that, of course, led to a colectomy. [ more ]
Doug K Oh my gosh - that is not great. I need to look into that. I have been on Elmiron for 15 years. Thanks [ more ]
Kangaroo For those with IC, there are new studies connecting Elmiron to IBD. Elmiron not only causes eye issues but colon issues as well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
high stoma output after j-pouch revision
S seanbo1001
seanbo1001 Thank you so much for your advice. [ more ]
roseviolet Avoid anything containing sugar. Avoid fibrous foods. Try imodium/loperamide. Take two pills/caps 30 min. before each meal. You can also try Metamucil powder or cookies before meals, which will thicken output. If there's an advice nurse connected to your surgeon's office, run the above by them. Urgent care should have offered some advice before discharging you. [ more ]
seanbo1001 Thank you so much for the input [ more ]
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J-Pouch ForumsHelp! Need advice now!
Night time incontinence
Mema 1Mema 1
Doug K Hi Mema 1, many people feel a little nauseous the first week or so of Flagyl- but then the nausea seems to fade for many. I am not sure what your side effects were. I hope it works for you. [ more ]
Mema 1 Thanks for both of your replies .... great advice. I'm just paying that I can take the Flagyl with no problems. [ more ]
SteveG I'm also still on Cipro and Flagyl for chronic pouchitis (low maintenance dose of 250 mg / 200 mg at late evening). I found it is usually sufficient to take it every other day. When I tried to abort antibiotics completely I managed to get around for 2...3 weeks quite well, then my output became too thin, accompanied with weight loss and minor cramps. Though inflammation and BMs seemed to be hardly increased. At that point I started antibiotics again, beginning with 2x 500 mg of Cipro and 2x... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Distended abdominal
EI Eric in Seattle
Jaypea Walk walk walk. The other options uses the laws of physics. Gas travels up. Get on your hands and knees and put your head down on the floor so that your bottom end is higher than your heart. Do some gentle massage to encourage the gas to travel to your pouch then once you feel things move, get thee to the toilet for a most satisfying session of flatulence. Fingers crossed for you. [ more ]
Scott F It can depend on where the gas is trapped. Plenty of walking often moves gas along. [ more ]
Doug K I sent you a private message [ more ]
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J-Pouch ForumsHelp! Need advice now!
Discharge
M Melsp34
Melsp34 Thank you for all the advice, she has had some actual poo too a couple of times, they told me that could happen but I was much more worried about the leaking every day, I’m glad to hear it doesn’t continue. [ more ]
New577 I asked my surgeon about that very possibility during my loop time. he told me that the unused branch was stapled shut and tucked into the abdomen, so it was impossible for stool to enter into it. [ more ]
SteveG I understood the post that way, that the stoma itself "leakes" into the pouch branch, creating discharge there. That can always happen with a loop ileostomy. There can also be mucus from the inactive part of the bowel and pouch as well as bacterial residue in the output. I wouldn't worry about that if it was meant that way. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Routine pouchoscopy shows there's a leak at the tip of the "J"
B BK 123
BK 123 Hi all, Quick update - had the fluoroscopy done and to my surprise they said there's no clear sign that would indicate a leak or perforation of any kind. The images showed that my pouch kept the contrast contained and the small bowel distended normally. Awaiting the MRI results and having a full blood panel done today. Very pleased to hear this news! [ more ]
SeattleJane @BK 123 I hope learning from your surgeon that it is a "relatively easy fix" and he's done them before is comforting. Fingers crossed for you that the MRI and fluoroscopy go well. It's helpful they are both scheduled for next week - that's soon by today's health standards. Looking back on the wild ride (agreed) sometimes the time between diagnostic appointments proves to be the most stressful - the not knowing exactly what's ahead on the next curve. Thanks for checking back with us. Stay in... [ more ]
BK 123 Thanks all for the kind words of support. I saw my surgeon today for a routine follow up and briefed him on Dr. Shen's findings from my endoscopy. He looked over the pictures as well. He did say while it isn't common, having a leak at the tip of the J is a known risk and he's fixed them before. He assured me that it is a relatively easy fix, they would sew it up laparoscopically. As to whether a temporary ostomy is necessary, it'll depend on how much inflammation there is. I have both the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Radiation treatment with J-pouch post prostatectomy
N NeilB
Scott F A friend of mine is doing well with Pluvicto, and that might target the radiation well enough to the cellular level to protect the pouch and the rest of the gut. He does have to isolate for a few days after each infusion. [ more ]
New577 Although my surgeon is dead set against radiation should I ever get a diagnosis of PC, someone posted here a while back that they had successfully undergone radiation with a jpouch. A product call SPACE OAR, which is a hydro-gel was injected btw the prostate and jpouch to shield the the pouch from the radiation. if you do a search, you should find the thread. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding 4 weeks after takedown
JanWillemJanWillem
Scott F Bright red blood can also be from hemorrhoids. Obviously our attention is (and should be) on recent surgery, but hemorrhoids can bleed at any time. Learning a new way to poop can cause misapplied pressure/straining, which could exacerbate hemorrhoids. [ more ]
SteveG Bleeding can also occur when the bowel is exposed to shocks (from jumping around) or intense twisting of the body (in my case occasionally after nordic walking). But usually only once after such a situation. If it happens too often, you should visit your Dr. [ more ]
JanWillem @New577 with bleeding significantly I ment, you can see it is blood. Not a huge quantity. I am not native speaker and might used wrong wording there seems like it was a one time thing that came together with a diarrhea event. Feeling better again and the stress came a bit down. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Autoantibodies and Brain scans
ScattyScatty
Scatty Well I don't have arthritis, my brain scan came back normal.....debatable. Endoscope tomorrow and I'll ask the doctor about crohns. Otherwise back to the drawing board. I think I need to have my hemoglobin tested again, I'll see if they can do the auto antibody test again. I am on a waiting list to be assessed with ADHD so the bad brain fog and missing words could be coming from there. As for the positive test for auto antibodies 🤷🏼‍♀️ I don't know. [ more ]
AllyKat You sound like me. I’ve had plenty of brain scans so I know I’m ok, I just think for me it’s an age thing. [ more ]
Sara Marie ❤️
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