J-Pouch ForumsWomen's Health & Pregnancy
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J-Pouch ForumsWomen's Health & Pregnancy
Good luck with it and make sure you get a really experienced surgeon with redo IPAA 🙏 [ more ]
Thank you for the information. I’ve seen a surgeon here in Las Vegas but I was considering going back to the Mayo Clinic where the original surgery was done. I will look into your recommendation. Thank you again! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Just seen your post today. So my comment may not be relevant anymore but no harm in sharing. My mother had her colectomy in 1959 was told she would never conceive. She went on to have 5 children, I am the only one with FAP. So you would more than likely be able to conceive naturally. I have chosen not to have children, I am 57 now and very happy with this choice. My mother is still going strong at 86, although she had a Whipples procedure in 1989 due to severe FAP manifestations everywhere. [ more ]
Hands on your back. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
In my experience being pregnant twice before my pouch and once after this is a symptom I had with all three. It sounds like it is just your body’s reaction to pregnancy (yay! lol) with all three of mine I had to be constantly munching on something or I’d get incredibly nauseas. It was particularly bad in the beginning. I hope your symptoms level off soon! But if they don’t, don’t let it stress you. Trust your body is asking for what it needs… it takes a LOT of energy to grow a whole human! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I just finished 21 days of Flagyl and the swelling is mostly gone, but there is still a hard tubelike lump that occasionally drains pus, thankfully not stool. Sometimes it burns, sometimes it hurts or itches. MRI in 3 days will be interesting if they see anything going on. Like everytime I finish antibiotics I fear everything will come back with a vengence. [ more ]
Shortly after my anastomosis/j-pouch surgeries in 2000 I developed a recto-vaginal fistula, so I had stool coming out my vagina for several years. Just as I was coming to grips with having to wear a tampon 24/7, I had a pain that literally felt like my organs were being re-arranged. Next thing I knew, no more! I believe God healed me. You really need a relationship with the Lord to get through this. He loves you! I still have struggles, sometimes more than others. Like lately, I’ve been... [ more ]
Check with your Gyn, even if just a phone call. MRI is pretty accurate in detecting fistulas. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
PERFECT!!! My doctor told me to do the same. [ more ]
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@Ciara93 I don’t remember my pouch/incontinence being a big issue after my C-section. I had all of the regular symptoms that anyone would post C-section. Mostly I remember the trapped air under the shoulder thing being painful but other than that, it wasn’t more or less hard than my vaginal delivery’s, just different. Good luck!! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I didn't end up coming off HRT but I did reduce my estrogen and progesterone dose and this helped me in the reduction and frequency of PMS symptoms that include lower back pain and butthole irritation (especially hemorrhoids). I wonder if you're having an increased sensitivity to foods or a reduction in your production of digestive enzymes? I have been experimenting with those lately and they have helped reduce bloat and I feel like I'm getting more nutrition/energy from my food. That paired... [ more ]
My pouch has been going crazy in the last year during perimenopause. I'm getting a lot of bloat and not going to the bathroom as much as I used to during the day, but going all night. I go to bed looking pregnant then wake up after several trips to the bathroom looking normal again. Anyone have any tips? Does it settle down once you're in menopause? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
Been meaning to respond to you and big congratulations to you! How are things going with the pregnancy? I know this was a loooong time ago that you posted, sorry for the delay! We got matched with an adoption opportunity and the baby is due in October and fingers crossed it all goes through! (It's a girl!) [ more ]
I too experienced infertility post J pouch and we went the adoption route because it was many years ago. Now there is also something called an embryo adoption. Most IVF doctors tell you about donor eggs which are expensive and still have to fertilize and then implant. With donor embryos, that has already occurred and transferred right into your uterus. If you google embryo adoption you will usually find Christian Agencies that offer this with other people’s remaining embryos. Everything in... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi @Ciara93 is this your first pregnancy? I had the benefit of being pregnant twice before my j-pouch so I was more accustomed to all the very weird things you feel during pregnancy. It is very possible that cramping you are experiencing is totally normal- half way through your body is reconfiguring in some wild ways to make room! It can also be a warning sign that is totally unrelated to the j-pouch. If you’re already doing all the things (lots of water, rest, checking in with ob to make... [ more ]
Hi Lisa, wondering how you got on with this? I’m 22 weeks and the cramping is bad! Especially when baby is very active [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Thanks so much ♥️ I’m on my second course of flagyl now since start of May. My ob said it’s ok and a better option than being sick with pouchitis while pregnant but I’m just wishing I didn’t have to take them. Had my 20 week scan 2 weeks ago though and Baby is looking and measuring perfect so I’m delighted with that. hoping this is the last bout of pouchitis I’m plagued with while pregnant now. [ more ]
There are definitely antibiotics that are safe during pregnancy! She's 5 now so too far back for me to remember exactly what they prescribed but I did have pouchitis that was treated with antibiotics. She is a rainbow baby so my stress levels were high but I also know the risks are minimal and I trust my OB to not prescribe something that poses a risk. I'm glad you've found some relief. Wishing you both happy healthy pregnancies!! [ more ]
Hi Ciara, so I was given an antibiotic called cefalexin and it worked brilliantly. Cleared it up quickly and had no more bouts during pregnancy. In third trimester I did start going to the toilet a bit more but after giving birth My j pouch went back to normal [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi, I am 10 weeks pregnant now and have been taking Imodium daily. My gp had said this is safe during pregnancy but now Google is scaring my and with having a j pouch it’s necessary daily for me since being pregnant . Has anyone taken it frequently in the first trimester and everything been ok? I’ve stopped now and I am way overthinking and getting upset that I’ve done harm [ more ]
First off, CONGRATULATIONS!!!!! Next, have you tried any natural thickeners like psyllium husk or Metamucil? You can probably get the same or similar products from a health food store too if you are worried. I agree with the elimination diet too. Try removing only one food group from your diet, keep a journal, give it a few days before expecting results, and write down how your body reacts. If there is no change then try a different food group. I generally suggest to cut out all dairy... [ more ]
Did your doc advise you to stop meds? I took a couple courses of Flagyl (first and second trimester) during my pregnancy for pouchitis. I also continued my lopranimide, lomotil, and promethazine as needed throughout. As a side note, I finally bit the bullet and gave up dairy after my pregnancy and have not needed any meds except over the counter Imodium for my pouch. If you know your trigger foods trying to cut them out could help. congratulations on your pregnancy!!! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Haven’t been on this site for awhile, but I have had my J pouch for 34 years and I am now 57 ….seeing a physical therapist that specializes in the pelvic floor is so helpful especially post menopause. Most hospital based physical therapy departments have people that specialize. [ more ]
I had my surgeries done as a teenager and don't have any comparison to what sex was like pre-j-pouch, but I did have trouble with discomfort once I became sexually active. After many years, I ended up going to women's health physical therapist, and she was able to identify exactly which muscle was overly tense and fix the problem. The difference was night and day, and I haven't had any issues with pain or discomfort during sex in the years since. SO, all that to say, it's possible that... [ more ]
Anal isn't a problem for me, don't have any interest in that, but my husband and I do have a very active sex life, and I would hate to see that suffer. I know the rectum helps support the vaginal wall, so that is the part that worries me, and is making it hard to decide between which surgery to have. I appreciate you advice. I hope things improve for you. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I have always had irritation of the pouch/anal area with my cycle. Now that I don't have the periods anymore, I still get cycles, meaning there will be a PMS-like time and there may be lower back ache, digestive disturbance, and soreness in the anal area and if they go on too long, there can also be increased inflammation in the pouch which leads to night time leakage. When I have PMS-symptoms, I take "Peacekeeper" from "Herbalogic." It clears those symptoms up, plus decreases irritability... [ more ]
I would call your doc for a prescription especially knowing you’re about to go on a cruise! I’ve never had pouch symptoms as a result of My menstrual cycle. I’ve had pouchitis, and I’ve had bad periods, and while they share the commonality of “cramping” it’s a different cramping. You know your body, if this feels different than symptoms from a period, I would get a prescription ASAP so it doesn’t ruin your trip. My doc Doesn’t require a scope to write a once in a blue moon prescription for a... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
@Pluot @vstRN Hi, I am also using Cornell and think I have a RV Fistula, scheduled for pouchoscopy tomorrow. Can you please update me on how things went for you? Thanks a lot [ more ]
Oh, me too! I used to see Scherl weekly. I was just saying today that this is the first time since I became her patient that I haven't had a future visit on the books with her, touch wood. Good luck with takedown! It is time for some good luck for you for sure :-) Hehe, I was in a makeshift double on 14 after Step 1. I can't believe they are still doing that! I felt so bad for my roommate, she had to use one of those old fashioned bells like at a hotel front desk because her side of the room... [ more ]
Oh so funny. I'm sure we have crossed paths - I was practically living there for a while! And I love Dr. Michelassi - I saw him once for a consult and he is charming! Yeah, I am still diverted while everything heals which is actually a good thing for now (although I looooooathe this loop ileostomy). If everything goes as planned, I should be doing a 2nd takedown in June and will hopefully be done with all this for good. It has not been the best year and a half to say the least... But since... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Losing your hair depends on the chemo drug. Some may thin your hair without losing it. I thought losing my hair would be the worst, but it wasn’t as bad as I thought. I was referred to a beautician, that was also a cancer survivor. She fixed me up with a wig that was similar to my own hair/style and trimmed it to fit my style. Around home, I just wore a baseball cap. [ more ]
I dont know why the hair loss thing is so gut wrenching to me. Ive never felt like a beautiful person and was bullied my whole life. My hair is long, thick, and wavy and its the only thing i like about my appearance and to imagine it all falling out makes me want to puke. [ more ]
I was diagnosed with UC when I was 41, had s-pouch surgery at 43. Diagnosed with ovarian cancer at 55. I am now 66 y.o. I had surgery and chemo. It was caught early. My family on both sides has history of UC ( mom and paternal cousin) and breast cancer on both sides, so don’t know if all the steroids I took for UC were a factor. My UC was diagnosed before all the new biologicals were available. I had 4 rounds of chemo, I was a little more constipated than I was used to. Side effects were... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi there! I had a 5 cm cyst and my surgeon had to take my ovary. Luckily, no long lasting effects on my pouch. It was definitely a more complicated surgery because of the pouch scar tissue… I had a choice as to whether I wanted my surgeon to attempt it laparoscopically, but I opted for open and am glad I did so, because she would’ve had to abandon that route if she had tried and open me up anyway. I had asked for a colorectal surgeon to be present, was ignored, and then later my (gyn-onc)... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
Hi thanks for your reply. I have had one failed attempt at fixing it which failed so apparently the LIFT is the next option. Apparently my internal fistula opening is quite big so I am worried it likely wont be successful as well. Can I ask how long was the recovery?. And how long after can you resume work? [ more ]
I had a LIFT 2 years ago and it was successful! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
So happy to of found this thread, even if it has been a few years. I also get very bad pain during ovulation and my period. for about 3 or 4 days during Ovulation and the run up to my period i have such bad bowels, butt burn and bathroom visits that i end up on the floor after trying to breath through the pain till it passes. I have found rectogesic really helps during those times, along with hot water bottles, paracetamol and a bit of self care There was a part of me that doubted it was due... [ more ]
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I also found that menstrual cups reduced my cramping and pouch problems. Its interesting how that works. I would recommend looking into birth control that reduces cramping and bleeding. I also know that the really potent anti-inflammatories were a HUGE help if you don't want to go the birth control route. They have some pretty serious side-effects if you take them long term but you might only need them 2-3 days a month. I just happened to stumble on this when I was taking celebrex for... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I didn't end up needing a c-section with any of my pregnancies, but my OBs did talk about which incision they would use if the need arose. They gave me the same advice you got (with healing being harder for vertical, but could be nice to avoid having an additional scar) and left it up to me. My decision was to get the bikini cut-- my abdomen is a chopping block anyway, and I wanted the "easiest" recovery possible. The bikini scar is very low, so there's never an instance where it would be... [ more ]
My dr didn’t ask, he just told me they were going to go over the same vertical scar. He did say why make another scar. Afterwards he said he did have to cut away a lot of scar tissue, but I didn’t have any problems healing or pouch issues after delivery. I personally didn’t need any pain killers, just some regular Tylenol to take the edge off for the first couple of days. I was considered a high risk pregnancy and had some of the best OB drs in Chicago. Everything went smooth and I healed... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
DEFINITELY!!!!!!!!!!!! I take Naproxen for my cramps [ more ]
Generally when menses is about to begin there is an increase in prostaglandins in the blood stream. This causes increased peristalsis (therefore diarrhea) and uterine cramping. Medications designed to decrease prostaglandins will decrease the diarrhea associated with monthly bleeding. Naproxen is a good one but does not agree with many folks for the GI side effects as it is a potent NSAID. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Yeah I am just happy you were able to have kids [ more ]
So sorry that you have had issues. I was blessed to be able to have my daughter BEFORE my diagnosis or surgeries. My surgeon told me to wait a year before trying again. But, during that year, the scar tissue built up, and I was never able to have any more children. It definitely stinks! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Going on birth control has helped my periods not be as painful. Currently I’m on the continuous birth control where you don’t even get a period. The packet of pills are a 21 day supply. Day 22 you start a new packet and skip right over having a period. It’s been amazing!! [ more ]
I have endometriosis and so I experience tremendous pain each month. I don't take Aleve because it's not good for j pouchers. (Too bad because it really helped). A heating pad is really helpful with cramps. My Dr gave me a prescription pain reliever and it helps tremendously. I hope you feel better. [ more ]
If bothersome and limiting your life I would discuss NSAIDs with your GI doc as often you only need to take them for the first day or 2 of your period and this limited use is really of questionable risk for triggering pouchitis which is the feared complication in j pouchers. NSAIDs work on prostaglandins and reduce pain and inflammation which is why they are so effective for menstrual cramps. Tylenol is simply a mild pain killer. It may work for some but doesn’t cut it for many. If NSAIDs... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hey, I didn't have the fimbrioplasty as the specialist I have been working with said there was just so much scar tissue that chances in my case were too strong that more scar tissue would form and we would be back at square one. I am just finishing up 2nd round of IVF and just waiting to see if this time we will truly have success as the first round ended with a blighted ovum, so sack developed but nothing else. After the first round we fixed some other issues so hoping that this time we... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I love your use of "exuberant" in reference to BMs. [ more ]
Final update: I managed to collect most of my urine using the toilet hat, but it wasn’t that easy. I had hold back BMs and so couldn’t void my bladder completely. It was quite stressful because I am unwell (from something else). Also my bladder was damaged by a medication that I took last year. So I am up at all hours to pass a couple of drops of urine that are keeping me awake … and in this case the added hassle of putting the hat under the toilet seat, aiming into it, retrieving it from... [ more ]
@Sara Marie I had the opposite problem and had to scooch forward to pee into the hat. I managed to get the samples, but only by holding on to my BMs. This meant I didn’t always void my bladder. The toilet hat did help, it wouldn’t have kept BMs out for me either. I will not agree to another test like this unless the doctor has a good reason for it. I am a bit angry with my doctor because he handed me the order without explaining what the tests were or why I was having them. I didn’t see that... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
We opted out of IVF. Can't afford that financial risk and im fairly certain the hormone treatments will send me back 10 years in mental health recovery. Adoption won't work because I've been to psych wards too many times to qualify. I think if my tubes are blocked its game over and I will have to accept not being a parent. Ulcerative colitis stole my career and the surgery stole motherhood. It's ok...i think I am still a person without a job or children....my husband likes me at least. [ more ]
I had my J pouch surgery when I was 19. I had 2 kids at ages 33 and 37. We did have fertility issues, but I don't think it was because of the pouch. My pregnancies went totally fine! Just stay hydrated! [ more ]
@HeatherF21 It was similar for me—ultrasounds and other scans showed a few small pockets of trapped fluid, one ovary is mostly stuck in place and one tube is partially blocked. They assume a combo of surgical scar tissue and endo. I’m on a wait list for surgery to remove some of the tissue. I was told the only way to know definitively it’s endo is to go in surgically and look but all signs point that way for me. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
Thank you! [ more ]
Metamucil has helped me greatly with reducing straining. I was alway afraid to use it since I thought Metamucil would make my poop firmer and that would be even more painful. Metamucil acts like lubricant and it reduces straining and pain. Hope it helps! I use one wafer or one teaspoon of the powder. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
There are some specialists at Stanford who are pretty good and knowledgable about dealing with pouches. I realize it could be very far for many but I have been IMPRESSED with the care there, not on this issue specifically, but just the living with it part. They were totally unfazed by my pregnancy. [ more ]
Thank you so much for sharing and most of all hope. It's good to know things may heal and don't have to go haywire. And management of foods, hydration and fiber may help too. And if things go south I will definitely ask about the glue. I would be happy to never have surgery on my body again. it's so true, they are good at taking our diseased part out, but the after care is certainly lacking. My surgeon was awesome, but I've moved far away from him. It's impossible to find a good GI... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I'm so sorry that you developed such a severe obstruction and new diagnosis. I hope you continue to feel better! I wanted to echo your experience and plan for the 2nd pregnancy in case anyone else was dealing with this. I developed a blockage with my first and it was so scary and painful. And quite honestly the ob department did a great job of taking care of baby, but had no real idea about taking care of me and delayed calling in a gi consult. For my second pregnancy, I decided to be as... [ more ]
Hi all! It’s been a while since I’ve been on here! A lot has happened since I last posted. My second C section delivery went well (healthy, beautiful son!), but I did end up having issues with my BP again post-delivery and dealt with gestational diabetes and hypertension during pregnancy. I did not end up developing an ileus! I went with just taking IV toradol post-surgery along with around-the-clock Tylenol and was able to avoid opioids. I made sure to get up as soon as I could to walk... [ more ]
How are you doing? I just saw your post. When I had my daughter 10 years ago I got an ileus. It almost killed me. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi Karen, Oh my goodness, I can't imagine what you have been through for so long. Since my jpouch surgery I have had probably over a dozen small bowel obstructions. I've learned that I am full of scar tissue from the surgical error at the Cleveland Clinic in 2001. That surgery was to try to save a newly constructed pouch that was abscessed. Unfortunately, I was hell bent on having a jpouch and not an ileostomy so I went to the CCF for a pouch redo. The surgeon did not have the wisdom to talk... [ more ]
Joanne, Here is a list of my surgeries: January 2002 had an intussusception in the small intestine, jpouch in May 2002, emergency surgery due to intestinal obstruction in November 2002 (small intestine was found wrapped around the stomach), benign tumor and left adrenal gland removed in September 2003, c-section 2011, gallbladder 2013, emergency intestinal surgery 2015 (small intestine found surrounded in a ball of scar tissue. 4 liters of fluid pumped out even with an IG tube!), uterine... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
One of my past girlfriends had this issue. She had a very severe blood clot in her leg, was hospitalized, and they told her no more birth control. Like Lexi above she suffered from virulent periods. So she started using marijuana rather than birth control to tolerate her periods better. Mariana, I am sorry to hear about your Covid situation and loss of your baby. [ more ]
I had a severe blod clot when had takediwn surgey (1st step) im 2012. Stopped all bc pills since then. I got pregnant and needed to use aspirin and clexane. Unfortunately I was 7 months pregnant, I got Covid (jun/21) and my situatiom got pretty bad, went intensive care. My baby girl did not make it. [ more ]
I had a dvt (blood clot) at the time of my first surgery. I was told that I could never go on bc pills again. It was disheartening bc I have such awful periods. My general doctor was willing to put me on a mini-pill which does not contain estrogen. (Called Nora-be). I've had good luck with it. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
Hi Ina. I had my takedown 7 years ago and as other posters mentioned I took things slow at the start - basically lots of long walks in the first month or so. My doctor then referred me to an Exercise Physiologist which was great cos he guided me on exercises I was able to do a couple of months after surgery. Re: lifting heavy weights, I do heavy weight exercises at the gym regularly (and I'd say my performance is no different to anyone else's). As long as your technique is good, I'm sure... [ more ]
Thank you everyone for your feedback. You have no idea how much your responses mean to me! ❤️ I don’t feel so alone anymore. I’m just learning as I’m only 1 month into my last surgery. You guys give me hope & made my day! [ more ]
Hey @Ina ! I’m one year out from my surgery and had the same doubts as you once. I played sports for most of my life and was able to resume just like normal after healing. I personally waited 8 months, (I was really busy with school!) but could have easily started before that. Take your time to heal, start slowly. You will know when you are ready to start up again. Best of luck! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Not directly but indirectly related...I have had my K pouch collapse numerous times and as my surgeon said 30+ys ago, it pulled everything down with it (it actually just sat on my bladder and made my life miserable)...they did open surgery at the time and put my pouch back up on the wall and put my 'organs on a shelf'...the expression that he used, not me...I have just had my pouch picked up again through laparoscopic surgery 3 days ago (along with a couple of other organs swept and dusted). [ more ]
OMG! You poor thing!! How horrible? Have you gotten a second and maybe a 3rd opinion? Is you provider a big med center with alot of experience?? You might want to find one and definitely a new surgeon!! You are in my prayers. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi! I had issues with ovarian cysts through the years... A couple were quite large and had to be removed through a c-section type incision. I have not had a peritoneal cyst. I had a complete hysterectomy 2 years ago and (knock on wood) have not had any issues w/ my pelvic floor or J-Pouch. Please keep us posted! I will be thinking of you and sending positive thoughts! [ more ]
Hi there! I am also dealing with a possible peritoneal inclusion cyst. It was found on a CT right after my first j-pouch surgery. That was in 2019. Had an MRI spring of 2021 and it was there. Just had an ultrasound and it’s still there. They don’t act concerned and I really don’t have any pain from it but it does concern me a bit. My ultrasound says there’s a small nodular component within the cyst. I guess that seems a little abnormal to me? Not sure what I’m going to do about it…. [ more ]
I also have a very large fibroid pendulated from the outside of my uterus that is compressing my urinary bladder. I have other large fibroids inside my uterus, enlarging it. The ovaries are unable to be visualized, due to the size of the uterus. Sometimes I feel pressure and an uncomfortable feeling in my suprapubic area and have frequent urination and incomplete emptying sensations. I would really like to have a hysterectomy and oorphorectomy. I have had my J-pouch for 19 years and it is... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi @winnie ! I underwent this procedure 12 years ago. At that time my pouch was also 18 years old like yours. The ablation was performed at a major hospital in Boston. The doctor performing the ablation was familiar with j-pouches, touched base with the surgeon who did my j-pouch surgery (out of an abundance of caution which made me feel better) and was reassuring that the ablation shouldn’t affect my pouch or its function. (You could certainly ask your gynecologist to touch base with... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Then 1075 I’m so sorry that’s awful 😢 My fistula drains waste from my Jpouch to the vagina all the time. Sometimes it’s more drainage than others but I use flat cotton pads rolled up to absorb the fluid… It’s not swelling any more but it’s always there. I have investigated having it repaired but to be done properly it’s another 3 part Jpouch surgery with a high failure rate over 70%. My Jpouch functions well and I’m able to live my life and stay healthy and fit so I just focus on what I’m... [ more ]
I had a doctor prescribe Bactrim for the swelling of the labia. It worked wonders for that problem, which was one of the most painful issues. That was a couple of years ago. Since then I discovered a pouch to vagina fistula. Before that, I had some bartholin cysts and also abscesses in female regions, I assume from leakage of of fluids from the j-pouch. It gets itchy and then the abscesses get bigger. Sometimes they drain either puss and or blood. It’s pretty awful, but somehow you get... [ more ]
I’m pretty sure the bartholin cysts were at the root of my RV fistula as well. Do you have Crohns or Ulcerative Colitis? I’ve got a jpouch but had UC. I’ve been offered biologic for fistula but I’m not a huge fan of taking meds essential systemic. I really hope you get some relief. I’m so sorry you’ve had to get a seaton 😢 it’s added insult to injury with this IBD 💜💜💜 [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Well, my urogynecologist "didn't feel comfortable" with the results of my MRI which was not exactly clear, so she sent me to see a colorectal surgeon (who, along with another CR doc there, created my jpouch in '93 - talk about full-circle). After spending oh, $5000 or so on ultrasounds, MRIs, office appts., other testing, he did a quick $40 co-pay exam, and knew immediately what the issue was: "the patient has a chronic fluid collection in the deep pelvis just posterior to the vagina and a... [ more ]
Thanks for sharing, katenet. I was able to see the PA who did a few tests and thinks I may have a small fistula. Will probably be doing some imaging to see what we can see. I was given some pelvic floor exercises for the urinary thing, but it's not certain what's going on there. I'll keep you posted if/when anything else comes up. [ more ]
I am a jpoucher with chronic pouchitis. I just started having overflow incontinence. Just like a slow dribble. i also have an appointment at the urogynecologist in a few months [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
@OscarThePouch no lasting effects on my pouch or pouch function after the surgery, thankfully. I totally agree and hope you don't end up needing surgery after all! [ more ]
I had my colon removed in 1995 and in 2002, my gynecologist found a growth in one of my ovaries. It presented itself like it was cancerous and after a few scans and scary appointments, the doctor (head of gynecologic oncology surgery at Northwestern Memorial in Chicago) deemed it to be non cancerous but wanted to remove it asap. I was 38, had decided against having children and for various other reasons, including that I had already had so many abdominal surgeries (2 for the total colectomy,... [ more ]
Yeah that is sort of my fear. That conversation you described sounds like the one I had. I am pretty sure I DO have scar tissue and possibly adhesions because I have before. They caused bowel obstructions years ago. Did you have any lasting changes to your pouch behavior after that operation or did things go back to normal after your bowels woke up? I hope I can find someone. Really what I hope is that my cysts shrunk and I find out at the next check that I don't need any surgery. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Please read my posts from the past year or so. It sounds a LOT like what I went through. For me, it started at the very end of my pregnancy and lasted about a year and a bit afterward. In the end……it was a newly developed egg intolerance. I can’t even begin to tell you the hours spent crying in pain, the multiple inconclusive doctor visits, the frustration. I was no longer able to tolerate eggs which I was having every single morning. Eggs in baked goods were fine…but scrambled and other... [ more ]
Your welcome [ more ]
That’s great to hear! Congrats on your new baby!! I also had my daughter via c-section in December. She’s a healthy 5 month old now! I requested to have a vertical incision on my tummy using the existing scar and it took a while till I felt like I have any core strength again. But it healed all well and I’m happy with my decision. I‘m breastfeeding now and finding it hard to stay hydrated well. I’m always thirsty and my body doesn’t absorb more than a certain amount. If I keep drinking I... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Don't know why not. My gyno does. Her exam of that area is minuscule compared to the pelvic floor physical therapy I have in that area. [ more ]
No my general practitioner let my GI doctor handle everything in that area. So no I don’t get one from my doctor during a female exam. [ more ]
Hm. I don't remember having an anal exam during a regular pap/pelvic exam but, having said that, I've had a number of 'digital probes' of the anus including a physiotherapist for pelvic floor work. She was given the go ahead by the surgeon. No pouch damage. Just my thinking though.... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
@susbo so interesting! I had two kids pre-jpouch so I was fascinated about how my third would "fit". In my experience you might just have good luck and good muscle tone. My third was my smallest but I showed just as dramatically. As a first time mom, I was visibly pregnant by 12 weeks so I think it might just be genes. While it was cute while I was pregnant it did some major muscle damage to have them all jetting out like that I just got repaired. @courtney28 congratulations and ENJOY!! I... [ more ]
I do not have children but I would strongly recommend to breastfeed for at least 2 years or more, that helps prevent babies getting sick in the future. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I had my Csection after Jpouch (I have also had a Csec before Jpouch). It wasnt much different. No leakages nothing. They dont give you epidural for scheduled C, but its anesthesia/morphine combination. My take has been clearly, dont think too much, sometimes ignorance is bliss. Enjoy you pregnancy . Congratulations and good luck. [ more ]
I had two vaginal deliveries with epidural prior to my jpouch and then a c-section post jpouch. It did not take me any longer to get up and moving post c-section than it had for my other deliveries (a few hours)- whatever they used took basically the same amount of time to wear off! I had no bathroom issues post c-section. The biggest issue for me post c-section was following the guidelines to take it easy because after all my j-pouch related surgeries the c-section pain was no big thing. [ 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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