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J-Pouch ForumsGeneral Discussion
For the women... still no menstrual cycle!?
lovedby2lovedby2
Bubba1028 I wanted to bring this topic back up. I’m two months post op,-‘d had one normal period, but missed this past month. I’m on the pill and unsuccessfully tried to be intimate once- no possibility I could be pregnant. Would the surgery make my period sporadic, even if I had it just find after my first surgery and the month after my second? [ more ]
Holly M It is normal for sure. It took about 4 months after take down for my next menstrual cycle to start back up. [ more ]
TE Marie Hi, you might want to post and/or read some posts in the women's forum as well. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch diversion, now lots of abscess/fistula drainage
n/an/a
n/a Thanks TE Marie. I've been reading up on this issue, and one of the suggestions was to try to empty the pouch of its mucous on a daily basis. Since my abscess/fistula communications with the pouch, the theory is there wouldn't be much left for the abscess to drain. I tried it a couple times, and it seems to help - no more big "accidents" from the abscess or elsewhere. Hope it holds true for long term, we will see. [ more ]
TE Marie There it is again, medical professionals saying something is "normal" when it seems far from it. As Jan said any change that is beyond "normal" might indicate another problem. I hope your j-pouch clears up soon. [ more ]
n/a Thanks Jan. No fevers or other abscess symptoms like I had with my previous abscesses. My jpouch puts out similar output from time-to-time, which I was told would be normal at this point. If the draininage comes from the seton hole that was made in November, could there be another abscess inside that same area? Not sure I understand all this (as usual ) I will be in contact with my surgeon or her PA. [ more ]
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J-Pouch ForumsGeneral Discussion
Ulcerative Colitis (J-pouch) and Degenerative Disc Disease...anybody else?
samwoldsamwold
Jan Dollar I agree with Scott, with one caveat. I was diagnosed with enteropathic arthritis about a decade after my colectomy for UC, although I had symptoms since 20 years before my colectomy. It just was not significant to make the connection. Anyway, my diagnosis was made basically due to chronic low back/upper buttock pain. I also have some degenerative disc disease and spinal stenosis. My rheumatologist said that enteropathic arthritis can accelerate the degeneration. You mainly need to see a... [ more ]
Scott F Degenerative disc disease is very, very common. I don’t think there’s any connection to IBD or J-pouch surgery at all. I had back surgery a couple of years ago that helped enormously, but mine had becom very severe, affecting strength in my leg. The surgery wasn’t very bad, but many people with back pain are better off without it. I hope you find some relief! [ more ]
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J-Pouch ForumsGeneral Discussion
another 5 stars for Dr. Shen
CatinthehatCatinthehat
Jan Dollar Well, hopefully enough time has passed for signifigant scarring to develop so that the abdominal wall will have enough strength to hold together without the mesh. For me, the incisional hernia was not much of a surprise after prolonged illness with UC and nutritional deficits. Plus I was on high dose steroids at the time of colectomy. My mesh repair was 21 years ago. So far, so good. Jan [ more ]
Catinthehat The mesh has not been a problem for 7 years, at least that I was aware of, until the fistula appeared quite rapidly, about 6 weeks ago. Dr. Shen thinks that it is due to the infected mesh and the pouch abscess is a separate issue. (Correct, Dr Shen does not seem to like mesh.) I have also been on Azathioprine and before that prednisone for other auto-immune problems. These drugs may have lowered my resistance to problems with the mesh. When I have the mesh removed, I don't know what prevents... [ more ]
Pouchomarx so are you/they thinking that the mesh caused the infection which led to the fistula? how soon after the mesh repair did you notice issues? or do you think this was all caused from the infected abcess? .. I know Dr Shen was not happy that I got a mesh repair for my hernia but I also knew the success rate without mesh is very low and I wanted to minimize my chances of further surgeries [ more ]
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J-Pouch ForumsGeneral Discussion
fistulas
kangaroo womankangaroo woman
kangaroo woman Thank you, catinthehat. Yes, my next stop will be a gynecologist to see if she could spot something. I'm looking into natural anti-inflammatories to try and get the inflammation under control since it's the pouchitis that caused the fistulas. I may need to take a trip to the Mayo Clinic (where my first surgeon is) to get a thorough work up. I adore my NY surgeon, but I adore the facilities at the Mayo. They provided me with care that could not be compared to the tri-state area. Thank God... [ more ]
Catinthehat My understanding is that fistulas do not usually heal on their own. I have one that has formed at my navel and am currently waiting for surgery to be scheduled at Cleveland Clinic. A CT scan helped to locate it. I certainly understand your concern and waiting until the end of January for an appointment is not helpful. Do you have a gynecologist or gastroenterologist that you could see? [ more ]
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J-Pouch ForumsGeneral Discussion
Diarrhea
B Bubba1028
Bubba1028 Thanks for the reply. I actually picked up some Metamucil tonight on the way home and I’m starting with one glass tonight. Thanks for the explanation about the soluable fiber vs. insolvable fiber. The doc also prescribed my something called Questran, which may slow down the pipes. I’ve also got a sore bum right now from going- tried to rough it at work today without taking my wipes and cream to the restroom. Lesson learned! [ more ]
Scott F Bubba, it’s still pretty early in the process for you, so sometimes the strange sensations may just require getting used to your new parts. Straining isn’t very good for your pouch (or the rest of you), so if you’re able to reduce that I’d recommend it - perhaps deep breathing or mental relaxation, which were sometimes helpful for me. There’s a big difference between soluble fiber (e.g. psyllium/Metamucil) and insoluble fiber (e.g. vegetables). Soluble fiber helps many of us, including me,... [ more ]
Bubba1028 I got tested for c diff when I was in the hospital, so I don't think it's that. I've had c diff before and it doesn't feel the same and it's missing that horrible smell. I woke up feeling fantastic today actually. I did call my doc and they added Questran and suggested to eat a lot more fiber - way more than I normally would. I always thought fiber would make you to the bathroom more. I'm used to avoiding it - back from when I had UC. It'll be weird to make that switch. How can they tell if... [ more ]
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J-Pouch ForumsGeneral Discussion
Nausea with diverted pouch and possible crohns
SaffSaff
TE Marie Have a wonderful trip! [ more ]
Saff OK thanks Scott and TE Marie, good to know some options. I managed to get in to see gastro at last minute before I go. Also had a bowel obstruction lastnight.. maybe I had partial obstruction that was causing nausea.. anyhow will see Gastro this morning. [ more ]
TE Marie Have you been checked out for GERD? The medications Scott is mentioning above should treat it is that is your problem. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Diversion ... done - on my way to full removal.
n/an/a
Saff HI again N/A, yes i will keep in touch, with Lori also - sounds like were all at a similar stage. I had a bowel obstruction lastnight - eek ! awful things. [ more ]
TE Marie Glad you are doing better N/A. I too was diverted to an end ileo aroun 6 months before I had my j-pouch and rectal stump removed. That surgery has to be done open so expect a midline scar. Mine was larger than it was when they removed my colon but the recovery was better than from the colonectomy. It probably had something to do with already being use to an ileo. Have you looked into NUUN hydration instead of drip drop. It is much more reasonably priced. It is on Amazon or you can order it... [ more ]
n/a At my 2nd 10-day stay at Cleveland hospital, I was unable to eat anything without throwing up. Even after countless tests, they couldn't decide whether I had a stricture/adhesions or my bowels just were pissed off and went on strike for awhile. I was put on TPN via a central venous catheter, and am on it 'til this day (at home), but am weaning off and hope to be off in a week or 2. On the bright side, I am feeling better, eating almost normally, gaining weight, my output has thickened, a lot... [ more ]
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J-Pouch ForumsGeneral Discussion
The end is near..
H Halo52208
jeane Me as well. Seeing Dr Remzi tomorrow! [ more ]
Saff Oh good to hear Halo, I'm procrastinating on removal also. [ more ]
TE Marie Glad you are home and doing so well. Sitting a little sideways on the throne helps too. There are u-tubes on how to empty and other topics. My backside took a long time to heal. Not the stiches but getting over the rectal stump removal. That was "normal", as if anything following a colonectomy is normal. I invested in a nice cushion. Let us know if you have any questions. [ more ]
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J-Pouch ForumsGeneral Discussion
What labs should be drawn for vitamin deficiencies?
PouchomarxPouchomarx
BlueFlame Wondering if others have had unfavorable creatinine and BUN values due to dehydration? My GI was concerned about my lab results and now I’m off to an urologist regarding kidney function. In the meantime, my PCP had me recheck BUN and creatinine after making sure I was well hydrated. Results came back in normal range. I now know if I’m not drinking 32-48 oz water every single day, my urine gets brighter. I’m just wondering if we are more susceptible to kidney damage because we dehydrate so... [ more ]
Jan Dollar My doc follows my B12, vitamin D, B1 (thiamine), folate. I was deficient in all except for folate. In addition, I get a full battery of other tests (blood counts, liver function, kidney function, thyroid, lipid panel, electrolytes, HbA1c, ferritin, urinalysis). Jan [ more ]
BlueFlame B12 and folate. I was just found to be in low normal range and have been fatigued. I’m starting B12 shots and folate by mouth now. I’m sure there are other recommendations, too. [ more ]
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J-Pouch ForumsGeneral Discussion
pouch scope
bev 69bev 69
Scott F A tap water enema is just a rinse-out. I wouldn’t use the liquid that comes in the Fleet’s bottle, since that is irritating, but the bottle itself is a handy tool when refilled for a tap water enema. You’ll probably be fine in either case. The scope can be used to rinse away anything that’s in the way. [ more ]
bev 69 Hey thanks Scott & Kelly , I'm leaning towards fasting for the day , the enema just worries me, I've got an 1 1/2 hr. drive . Thanks again☺ [ more ]
kc80 Typically I just do clear liquids the day before a scope then nothing after midnight. Sometimes they suggest a fleet enema the morning of the scope too but usually I don’t need it. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Extreme Pain in Lower Abdomen and Lower Back -Need Help!
WJ Westcoast Joe
Westcoast Joe Thank you for the responses. I drink a ton of grape juice and ate very light. It appears it was a blockage and I'm feeling better today. Joe [ more ]
ezpete Kidney stone??? Need to see doctor. [ more ]
Winterberry Hi, Joe. During a recent checkup with my GP, I was told to keep an eye on my kidney function and if I have pain in my back (left side) that moves around to the left-front, I should call because it could be bladder related as a result of some minor meds I am taking (not j pouch related). Pencil-thin stools could be a stricture? Sometimes antibiotics can cause constipation. Maybe time to check in with your doctor? [ more ]
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J-Pouch ForumsGeneral Discussion
portable bidet
S scorp99
Winterberry After my reversal I used a plastic travel bidet bottle that I bought on Amazon for $14. It saved me. It's called the Brondel travel bidet. Comes with a handy travel bag. The bottle is easy to fill with warm water, easy to use, easy to clean the bottle and nozzle with soap and hot water. It has a firm spray from any angle because of the air lock button on the bottom of the bottle. You can discreetly fill it in a public bathroom and take it into a stall to use. You can fill the bottle and... [ more ]
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J-Pouch ForumsGeneral Discussion
The Invisible handicap
A asdfqwer
Linguist ❤️
Scott F A well-crafted pouch with a good blood supply will generally last a lifetime. Like any body part, things can go wrong with it, just like a colon, a heart, etc. I don’t consider a J-pouch a handicap or disability. If anything, it’s the opposite, since it relieved me of a disability. If the pouch is badly constructed or functioning poorly then that’s like any other disease or condition: perhaps treatable or repairable, and sometimes disabling. [ more ]
skn69 I don't see why you should lose your pouch due to age...it is not a given that it will happen, not any more than any other medical problem. That said we have been through surgeries, drugs, treatments and an assortment of infections along with whatever disease or illness brought us to the pouch in the first place. Cortisone treatments over the long term can fragilize certain tissues. So can other drugs. Surgeries can lead to adhesions. Nothing that is done to or for us is with potential... [ more ]
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J-Pouch ForumsGeneral Discussion
Prep for lower GI
LaurieFLaurieF
LaurieF Kind of a shift in the thread but i just read this in a link about strictures. Naproxin/Aleve as a possible cause of stricture is what jumped out at me since I was taking a lot of Aleve this past year. Anybody have any thoughts about this? “Causes of stricture include Crohn’s dis- ease, cuffitis, ischemia (impaired blood flow), abscess (infection), and non-ster- oidal anti-inflammatory drug (NSAID) use, such as ibuprofen (Motrin) and naproxen (Aleve)” [ more ]
LaurieF Thats a scenario doc threw out there before he saw the actual problem. I dont know why this doesnt seem to be an option now? Maybe too large of an area? I will discuss these things at appt. [ more ]
Jan Dollar A balloon dilation may be possible and is often considered as a first attempt before using a stent. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Methotrexate and hydration
drone3drone3
Jan Dollar I think you are asking the right questions. My main advice is to be flexible and be open to changing/adjusting treatment as time goes on. I’ve been on biologics since 2005 and have gone through Enbrel, Humira, Simponi, Cimzia, and am now on Remicade. My main gripe with Humira is that it stings during injection. It hurts the least in the abdomen. Jan [ more ]
drone3 Ok, just got back from the rheumy. She has spoken to my Gastro. Dr and they want to switch me to Humira every 8 weeks and MTX injections every week, folic acid daily except for MTX injecting day. The logic behind it is that Infliximab stopped working for my joints, but was keeping me out of hospital for bowel obstructions (I may have crohns, never proven through biopsy). My arthritis is very similar to Ankylosing Spondilitis and Humira will help both the spine, peripheral joints and GI... [ more ]
CTBarrister I was also increased on Remicade to 6 week intervals and my MTX dosage remained the same. [ more ]
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J-Pouch ForumsGeneral Discussion
Nortriptyline - Positive Side Effect
K KiwiPoucher
Annikki My husband uses this after a brain injury to help with pain associated with TBI. They stopped making 25mg and he had change amounts. Do note that if it doesn't work for you you need to ween off of it. My husband had a slight change of 25 to 20 and went through withdrawal and had anger management issues. He ended up going up to help alleviate the the withdrawals [ more ]
JourneyToWellness Hi @KiwiPoucher ! Are you still on 30mg of Nortriptyline? Is it still effective? I recently started on 10mg and I'm starting to go up to 20mg this week. So far it has been helping me get better sleep, but I hope that the higher dose will lead to thicker stool and less urgency/incontinence. Do you take anything else that helps with the liquidy stool? Thanks!! Stephanie [ more ]
KiwiPoucher Yes, in higher does it is used as an antidepressant. However at doses up to 30mg it is used to treat neuropathic pain. Whilst it has not got rid of my pain, it has allowed me to reduce my Fentanyl dose by 25 micrograms/hour an alleviate some of the side effects it gives me. [ more ]
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J-Pouch ForumsGeneral Discussion
How to get things moving better
noya12noya12
Scott F Why not give psyllium (e.g. Metamucil) a try? It should even things out. [ more ]
noya12 When it's easy: pretty lose When it's hard: very formed [ more ]
Scott F What’s the consistency of what’s coming out? Is the consistency any different when it’s easy to go vs. when it’s difficult? ALso, do you have any pain when things are backed up? The solution will be different if your stool is sometimes too thick, vs. intestinal dysmotility, vs. partial obstruction, vs. pouch prolapse (to list some possibilities). [ more ]
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J-Pouch ForumsGeneral Discussion
Help with Fiber
KennyJG44KennyJG44
Scott F I suggest the powder over the capsules, for better mixing. I just follow the package directions, with breakfast and dinner, which would be a good place to start. I prefer psyllium, though it doesn’t agree with everyone. Think about whether you want the sugar (in the flavored powder or wafers), artificially sweetened, or unflavored. I actually mix a half-dose of sugar-sweetened Metamucil with a half-dose of Konsyl Original (unflavored). [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch has been formed and I’ve found my loop ileostomy :)
ConnlaBOIConnlaBOI
TE Marie Mine was painless. [ more ]
ConnlaBOI That’s brilliant! I will let them know the reason for my caution but that has really helped me. My surgeon did say that the tube is very thin. He said if I do experience pain then there is something wrong so I’ve just been overthinking it maybe! Haha thank you [ more ]
Former Member CONNLABOI..... Like yourself I was apprehensive of this procedure for very same reasons, I too explained my apprehension to the Radiologist who was very understanding and helpful but after the 10 to 15 minute procedure, which consisted mainly of laying on a X Ray table and waiting for results, I realised my apprehension was unfounded. The tube used to insert the dye is so thin, it wasn't even noticeable during its insertion or through out the procedure. My J Pouch surgery and this procedure... [ more ]
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J-Pouch ForumsGeneral Discussion
Leakng a lot of feces
M maryloar
Scott F Coumadin can cause diarrhea. Are you taking anything to address this, like Lomotil, Imodium, or fiber? Have you talked to your doctor about alternate anticoagulants? Did anything else change at the same time? Also, although the timing strongly suggests that the Coumadin (or something else that changed) is behind this, you might also simply have pouchitis. If that’s the case a course of Cipro could make a world of difference. Finally, you might have picked up C. Diff, especially if you were... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis, virus, or something else?
R RB15
RB15 Bump The Cipro doesn’t seem to be working for the pain, i’m having waves of pain across the abdomen that last about 10 seconds and when it reaches it’s most painful point i get a rumble and gurgling of wind there... i’m still passing stool but less frequent due to the cipro thickening things up, i’m now wondering if i maybe have a twist or kink causing partial blockages? A CT scan last year showed thickening above the pouch but my surgeon believes it was from the trauma of my multiple... [ more ]
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J-Pouch ForumsGeneral Discussion
How long have you had your pouch?
S Solomin
deweyj Its been discussed before on here, so a thorough researching on here might get you a more precise answer. When I had mine done in 1986 the surgery had been around about 5-10 years depending on when you measure. My understanding is the first surgery was done in England, St Marks I think? And to be candid while I wonder about the aging process ie incontinence etc, in many respects whats the point, we cannot stop the aging process, so what will be will be. I have an amended diagnosis of Crohns... [ more ]
n/a I had my pouch for nearly 26 years. I still have it, but was recently diverted with a permanent end ileostomy due to Crohn's related abscesses, ulcers, holes in the darn thing, strictures, etc. My dr. at Cleveland Clinic said they do not take many pouches out, they try to redo them. However, my pouch "has to go", in her words, after I recover from the abscess/ileostomy surgery. [ more ]
skn69 I posted earlier on this thread saying that mine is 38 yrs old...I wanted to add something for those who are worried about aging with a pouch or what will happen as you get older etc. My beloved surgeon once said that a pouch should not age differently than your natural intestines as long as there is no underlying disease. I age poorly...that is me, not my pouch. But I do a lot in spite of my age and health. I just spent a week working in Belgium (8hrs/day) with 2 severely injured arms... [ more ]
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J-Pouch ForumsGeneral Discussion
At a loss with incontinence and diarrhea
JourneyToWellnessJourneyToWellness
Pouchomarx and the leakage is not bad, I wear a very small pad and sometimes I have a spot on it and sometimes not. Its not like I cant hold it or I am pooping my pants. If it ever comes to that I will go back to permanent ostomy. [ more ]
Pouchomarx I see Dr Shen at Cleveland Clinic, he is the top jpouch doctor in the country if not the world. [ more ]
JourneyToWellness Thanks @chiromancer . It sounds like you made the right choice given your circumstances. I’m sorry your jpouch never fully cooperated, but I’m glad you have your life back now. I agree that it will be worthwhile to exhaust my options, but it’s nice to know there’s another solution always there if I need it. @Pouchomarx wow, that must be hard still having leaking issues. I don’t have the answers, but I hope you find them soon. I’ve been really pleased with seeing new doctors for second... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic still worth going for second opinion?
CatinthehatCatinthehat
Pouchomarx Shen does endoscopic procedures that not a lot of other GI's will do, but correct he is not a surgeon. I honestly cant recommend a surgeon so many of the good ones have left. I know Dr Remzi speaks highly of Dr Dietz who left clinic and went to University Hospitals in Cleveland which is actually right down the road from Cleveland Clinic [ more ]
Catinthehat I hope that I can see Dr. Shen, but I don't think he does surgery. Is there a surgeon at CC who you would recommend? [ more ]
Pouchomarx Of course Dr Shen is still there.. When they had the mass exodus of a lot of surgeons leaving last summer I asked him if he was going to leave and he told me, "Nobody else wants me". lol. love this guy [ more ]
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J-Pouch ForumsGeneral Discussion
Upset - maybe misdiagnosed and biologics concerns
B BlueFlame
CTBarrister The Prometheus results should be ignored, totally. IMHO this test is just a money grab by pathologists much like propofol was a few years back by anesthesiologists. Then when everyone started doing it became a craze until patients objected because it is 15 times the cost of conscious sedation which they do not tell you upfront when giving you a choice. As far as Prometheus they give something to the Docs like kickbacks for pushing these tests even though responsible and ethical doctors know... [ more ]
BlueFlame I don’t know but, while it’s quite easy to be negative, I choose to stay positive. [ more ]
Jan Dollar Sounds like it was a big waste of time and money... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Surgery Robotic or laparoscopic
lovethatgreylovethatgrey
CTB23 If you have a 2 step you have the colectomy and creation of j-pouch together. In my case, the pouch was created in the second step. Based on my case, my surgeon felt it was best to do it in three. No regrets! [ more ]
Gold I had my surgery this past August done robotically, the time was 8.5 hours, yes, the recovery was quick. [ more ]
CTB23 From my understanding the surgeries were done laparoscopic with robotics. It is all done through a keyhole incision with I believe 2 other small incisions. The other option I believe is open which is more difficult to recover from. My hysterectomy was open and definitely longer recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
Just had reversal do I have a stricture?
S sally85
David-J-Pouch I meant Dear Miss = Dear MGMT10 [ more ]
David-J-Pouch Dear Miss. I hope you are doing well. My son is having the same symptoms you described here: ====================================================== I developed an anal stricture about 4 weeks after my reversal. What your describing sounds a lot like what I experienced. I had anal pressure (felt like a bowling ball was lodged in my butt), always the feeling I had to go but nothing or a tiny bit would come out, loud, loud gurgling intestines. and just a general not well feeling. Once the... [ more ]
sally85 Hi sue, Thanks for your reply, I thought i was the only one having to do the whole bum separation thing! Was starting to feel really lost with it, I'm 3 weeks post takedown but all the symptoms like the one above, and cramping and gas and diahorea seem to be getting worse and not better, and the frequency is also not calming down! I hope your appointment goes well let me know, I'm going for my 6 week check and hoping they tell me what's going on, I'll keep you updated also xxxx [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotic Enema?
drone3drone3
Scott F This is kind of what’s happening when a fecal transplant is done. A healthy gut has thousands of bacterial species, and a typical probiotic has more like a half dozen. A few people here have tried probiotic enemas, but no one has reported fantastic results. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch after a year!! Still having issues!! 😣😣
BritBrat88BritBrat88
JanW2 So sad to hear of your pain. In the past 13 months, I had a redo jpouch, long hospital stay due to malabsorption,then an early reversal. my recovery led to horrid , unrelenting butt burn, diarrhea and weight loss. I opted for the K pouch! This takes just a little getting used to, but I do so much better than I did on my 3 times with The Illieostomy, my life is 100 times better!! It is difficult to find a Dr to do this , but sooo worth it. Mine was done in Cleveland by Dr Dietz . I will keep... [ more ]
LaurieF Im sorry to hear your situation you really have too much to deal with. I had much irritation and pain for a long time after my surgery and what really helps me are probiotics and yeast fighter supplements when i had severe butt burn hot water with the shower head or hot bath with epsom salts. Im really leveled out now but if i know im gonna drink or have a day where i consume a lot of sugars i start popping those yeast blockers. Idk maybe its just me. I hope you get some relief and if you... [ more ]
TE Marie I'm disabled on medicare too. If your surgeon accepts medicare the co-pay should only be the 20% of the approved medicare amount. I hope someone in the surgeon's office didn't know this. Unless s/he charges $1,000 for an office call and medicare approves that rate then your cost would be 20% or $200. Medicare wouldn't approve that so that's why I think you got bad information. Have you applied for medicaid? I don't have personal experience with that but think that covers the 20% medicare... [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch complication? Or is t something I ate?
S Sk
BlueFlame Staying hydrated and resting the pouch definitely can help these things subside faster. I’ve had odd left side pains and laying on that side with knees bent frequently helps. Suddenly things move through and there’s relief. I’ve also read laying on your left side encourages food to move through your bowels. Weird little things you learn. Hopefully that’s all it is and you find relief soon. [ more ]
Sk Thanks for the tips! I feel totally fine otherwise (save for a bit of pain in my lower left side... possibly kidney? Maybe a bit dehydrated?). And no one else is sick. Today is a bit better so far so fingers crossed it will pass and it isn't something warranting a trip to see my surgeon! [ more ]
BlueFlame Could be the pineapple. That’s sent me running before. The oddest and unexpected things can do it and everyone is different. It may even change over time. I can eat broccoli and Brussels sprouts all day, but forget even a small amount of lettuce, apples or grapes. 12 weeks out isn’t long. You may be adjusting and it will be a trial and error process with foods. [ more ]
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J-Pouch ForumsGeneral Discussion
Possibly going forward with J-Pouch surgery
lovethatgreylovethatgrey
lovethatgrey Thanks Scott. Sorry you are having to deal with pouchitis. Hope you can get off those antibiotics soon, It's wonderful to hear that your diet and activities are unrestricted - that's wonderful! I really would like to think that the majority of J-pouchers are enjoying their life - gives us hope! Thanks again. [ more ]
Scott F I’ve had my J-pouch since 2002, in my mid-40s, and it gave me my life back. Although I’m now obliged to stay on antibiotics, due to chronic pouchitis, my diet and activities are unrestricted. Since my surgery I’ve taken up scuba diving and martial arts. The surgery and adaptation can be pretty challenging. A simple external end ileostomy is a much easier process, but it does leave you with an accoutrement that some of us are willing to try hard to avoid. Many folks who’ve had their surgery... [ more ]
Teacherlady Hi Love! Yes, let's follow each other. Best to you and your husband! [ more ]
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J-Pouch ForumsGeneral Discussion
Short Bowel Syndrome
lovethatgreylovethatgrey
Scott F SInce the loop ileostomy interrupts the fecal stream before it gets through the entire small intestine, some folks can experience effects from the shorter bowel. The full length (minus a little bit at the end used to construct the pouch) is restored at takedown. So the effect, if any, is temporary. [ more ]
CTB23 This is the first time I have heard of short bowel syndrome. I did see some articles about it. Just google short bowel syndrome and j-pouch. It brought up some discussions on the j-pouch group forum. I had the 3 step procedure and had 2 ileostomies (an end and a loop) over a 9 month period. I think I was probably more fatigued during the first few weeks or so. I made sure I ate 3 meals and snacks in between, kept hydrated and still do and went for walks when I felt up to it. Hope things go... [ more ]
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J-Pouch ForumsGeneral Discussion
Laparoscopic surgery and recovery time?
TeacherladyTeacherlady
Scott F Some folks have long recoveries and complications, of course, but with a good surgeon things are usually pretty normal in six weeks or less. I could have gone back to work in 4 weeks, but I took the full six, and that was for a big procedure that did it all in one surgery. Assuming all goes well the most important thing that enables getting back to work is reliable access to a bathroom, and a willingness to use it. [ more ]
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J-Pouch ForumsGeneral Discussion
Holding it in
M Mcvm
Scott F I guess I get that sometimes, it feels like a cramp. I don’t take it too seriously as long as I can delay the bathroom without an accident. It was probably more frequent when my pouch was new. [ more ]
Mcvm I feel like I'm doing this, but did anyone else get pain behind/ up inside the bum (guess where the pouch is). The pain is tolerable but it sure can shoot from 0-60 pretty quick and then dissappears [ more ]
Scott F I got very good results from (gently) “stretching the pouch” from the very beginning. I didn’t overdo it, I didn’t do it so aggressively that I had accidents, and sometimes I just took a break, but in the beginning I treated it like exercise repeated just about every time I could have simply gone to the bathroom. I think this substantially shortened my adaptation period. [ more ]
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J-Pouch ForumsGeneral Discussion
Blockage and short hospital stay😠
davekdavek
CeeeeCeeee I have had one small bowel obstruction and it was the worst pain I've ever experienced. My surgeon kept me in the hospital 6 days and manipulated (massaged) my abdomen each time he came to see me....OUCH! But.......it worked and untwisted my small intestine. [ more ]
Scott F I don’t think probiotics will help prevent obstructions. I’m sorry you had to go to the hospital! [ more ]
lablover better yet, my husband does better with VSL. [ more ]
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J-Pouch ForumsGeneral Discussion
Lower right quadrant pain
KarenchaseKarenchase
Karenchase Scott, yes, the ER doc also suggested it might be gyn related. I suppose I don't really want to go there! With everything I've been through with my guts, any time things go haywire in that region, that's where my mind goes. Anyway, thanks for your reply. The pain is receding now, and still no other symptoms have manifested. [ more ]
Scott F Since your pouch function is unchanged, and the location isn’t suggestive of a pouch problem, it’s probably not pouch-related. There are lots of possibilities, including adhesions. You might also think about gyn considerations. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Self dilation
D dr
New YOrk Anna I have had to self dilate. I hate doing it. I do it very infrequently. I think I would feel better if I did it more regularly. My advice is to go to a sex shop. You need to buy a soft, vibrating anal stimulator. That is what I did. I had one for years, which came to a very narrow point. Now I can't find a replacement. The vibration helps with the insertion. You are not pushing anything, it kind of goes in by itself. I hope this is helpful. [ more ]
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