J-Pouch ForumsWomen's Health & Pregnancy
Topics
Sorted by last update
J-Pouch ForumsWomen's Health & Pregnancy
My GI suggests that all women try IVF right away because of such a high chance of having blocked tubes. My husband and I got pregnant after almost a year of trying when I was on the whole 30 (paleo eating diet). I'm not sure if it was a fluke, but I have a feeling that it played a role in us getting pregnant but if both tubes are blocked, diet won't make a difference. I suggest going to a fertility clinic sooner rather than later. [ more ]
I agree with Jill. Also, doing it every other day is NOT the way to get pregnant. I don't know what your access to books is, but I suggest the book Taking Charge of Your Fertility if you are interested in trying naturally a bit longer, and signing up on FertilityFriend.com, which is a free charting site that will help you understand your own cycle and the signs of when it's time to do it (and it's not every other day, which could actually hurt your chances instead of just doing it on the... [ more ]
AFter 4 years of unprotected sex and no pregnancies, I would be checking into a fertility specialist. Your biggest advantage is your age, so I wouldn't wait any longer. All fertility treatments are most effective the younger you are. An HSG test should tell if you have blocked tubes, and basic lab work will tell if you or your partner have any issues with hormones or sperm. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Give up dairy. Seriously. I was in denial about it for a long time because I didn't want to give it up, but human babies are just not able to process cow's milk (through your milk) very well and it's a huge problem for them. It's only for a limited time that you need to do this, but be sure to get all dairy out of your system. I found I had to hydrate with juice or gatorade when BFing because I have a tendency to dehydrate anyway with the pouch, and water was just not enough. My supply would... [ more ]
I had great success nursing my son with my pouch. I had to stop when he was a little over 5 months, because I needed to get back on some medication. But my supply was always fine. My kids were both intolerant to dairy protein. My daughter (pre-pouch) was much worse and couldn't handle it at all. Around 10 weeks is when we finally realized it was eating away at her poor little digestive tract and we switched to formula to get her healed as fast as possible. I was able to just cut down the... [ more ]
From my own experience and those of my friends, each baby is an individual, just as we grownups are. One baby may not be bothered by anything and another gets tummy troubles from practically anything. Even if you think you are eating a bland diet, there can be a particular ingredient that passes something through the breast milk, causing GI distress for your daughter. Common offenders are milk, nuts, chocolate, and caffeine. I had one friend who's son got gassy when she ate cucumbers. Go... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Thanks all for the responses. Keep them coming! We luckily have wonderful insurance so are covered for 4 lifetime IVF cycles...hoping for luck with cycle one which will begin mid November. I am currently taking birth control pills to get ready. I have consult with dr on 11/5. My RE has never said 100 percent that my 2 surgeries are the issue for us but it makes sense being that all other factors are good and I had no problem at all conceiving my son pre j pouch. he also said that in order to... [ more ]
Just wanted to share that I have a similar story and a happy outcome. Had no problem getting pregnant with my daughter in 2009, but after delivery my UC flared out of control and I had my first surgery when she was 3 months old. After a disappointing pouch experience, I went back to the temporary ileo 2 years ago and started trying to get pregnant, but after about a year of trying we got a fertility workup. My HSG was not quite "perfect," one of the tubes had some resistance in it, but it... [ more ]
I did two fresh cycles and a frozen and got pregnant all three times. I miscarried the middle pregnancy (the frozen cycle) early on. My kids are now almost 8 and almost 5 1/2. My best advice is to avoid the temptation to over stimulate the ovaries. Don't try to get as many eggs as possible. Have a dr who can be controlled about it - we got about 20 eggs both fresh cycles and that was reasonable. I did get a slight case of hyper stim the second time and it isn't fun and can cancel your cycle,... [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Well, the REAL problem is that any way you slice it, ANY method of birth exposed you to risks. Some are short term and some are long term. It is impossible to predict where any one person will fall into the risk ratio, particularly since there can be, and often are unpredictable obstetrical issues that crop up during labor and delivery. I certainly did not anticipate a frank breech presentation during my first delivery. This was not known until labor was well underway. So, c-section was... [ more ]
Hey! No problem! I just feel that there's very little information for ladies like us out there and we want to know these things - not just take a chance on our bodies or our babies. The most recent study that I saw (Jan's files) was 2007, which isn't that bad, but not terribly recent...it's would be nice to have some that were within the last couple years and from a variety of sources. Even the studies don't agree I've found, so it's hard to know which way to go. [ more ]
Great info on this thread! I'm 23 weeks along with twins and my OB wouldn't touch the issue, and even my MFM's response was like "huh, I'll have to look into that." 3 months later, we haven't really addressed it. I'm going to print out Jan's studies (above) and bring them to my next appointment. I know the vaginal / C-section issue has been heavily discussed on these boards - any experience with twin pregnancies? btw- don't mean to hijack the thread! [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Hi Mhairi! I'm 23 weeks right now- about 11 years post J-pouch. I had (mild-ish) nausea and slowing of the bowels in my first trimester. I also have had a feeling when I sit down that feels like it pushes all my organs up (not sure if this is what you're referring to, above). I've been attributing that to uterus growth and haven't been stressing about it. Congrats on your pregnancy! [ more ]
Hi! I'm 16 weeks and haven't experienced that quite as much. I do notice that I'm going more frequently and getting constipated (I feel like I really have to go, then don't, then get up and wash my hands and really have to go again..everything's still pretty liquidy though (sorry - TMI!). I have been feeling a bit of pain where my ostomy used to be (I had my surgery in 2 steps) and I'm wondering if it's because the muscle scar is stretching...could that be it for you too? [ more ]
Thanks for your reply Jan, I was the same with my daughter (pre j-pouch) here we call it Gaviscon and I had a huge bottle I used to carry around with me and swig right out the bottle lol! x [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I have a perm ileo, so I didn't have the concern of long term continence. When I talked with my high risk OB about this issue, he was fine with me trying a vaginal delivery if that's what I wanted. The only caution he gave me was that if I needed an emergency c-section, he would not be able to take special care of my intestines. His priority would be getting the baby out safely. With a scheduled c-section he felt he could be more thoughtful about how to proceed. In the end I opted for the... [ more ]
Obviously there is no "right" answer for every woman with a pouch. You seem to be aware that there is an increased risk of incontinence if you decide to have vaginal deliveries. If you think that risk is worth it to have your babies vaginally/naturally than you have your answer. C-sections can be limiting to the number of kids you have and can cause more scar tissue that may cause health issues and blockages down the road. Always do what makes you feel most comfortable, but as most IBD... [ more ]
I'm sorry, I don't have much advice on this- but I am interested to see the responses you get as this is something I've often wondered myself. Best of luck to you!! [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Sally, I think that I answered this post or another similar one on the general section...but there is no reason why the surgeon cannot reuse the same scar or even take advantage of the c-section to reduce the mess and make you a pretty abdomen at the same time...they can recreate belly-buttons too...here there are a couple of hospitals and private clinics (very chic, very expensive) that specialise in a 3in1 c-section...they birth your baby, give you a tummy tuck and pull it all together at... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Thank you for the in-site. I had a C-Section with my first daughter due to a weak heart and my surgeon not wanting to risk any tearing to the anus or rectum for my future J-Pouch. I switched my OB today after finding out my Surgeon does not practice at any of the hospitals she goes to and having him in on the surgery is the biggest thing. I mean anyone can do a c-section but fixing a knicked or damaged pouch is up to my colorectal surgeon. Has anyone every had to go back to the Ileostomy... [ more ]
also, yes, as you are in the 3rd timester, increased pressure is very common. it's difficult at this point to know if it's just extra pressure or pouchitis. pouchitis is common during pregnancy. you can discuss with your GI if he/she suspects and you can take a course of either flagyl or augmentin to help clear it up. [ more ]
what sort of delivery did you have with your daughter? if you had a vaginal delivery that went well (minimal tearing, small to average size baby, not very long pushing), you could consider that instead of a c-section. i had my daughter naturally pre-pouch and had a very easy delivery with my son post-pouch. however, if you had a c-section already, that will likely be your preferred route this time. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I haven't read all the other replies in detail but agree, it's a little surreal and a lot of tugging, but the thing itself does not hurt, that's what the spinal is for. I tried really hard to get better too quickly. I refused almost all pain meds post-section and tried to get back to eating too soon. I ended up puking the day after the operation. I also puked when I woke up from my pouch operation. Let me tell you something, it is NOTHING compared to the pouch pain. NOTHING. I mean, it hurt,... [ more ]
I had a vaginal birth before my jpouch and a csection after jpouch and I was just as anxious for the csection as I was the first time. Honestly, I had such a horrible delivery the first time I'd choose the csection if I had to pick. [ more ]
THe C-section will feel surreal to you. They don't sedate you, but I swear something about what they give you makes everything seem a bit other worldly. You won't feel pain, just some pulling and tugging. My husband stayed at my head most of the time talking with me about bringing the baby home so I was distracted. The anesthesiologist did too, and that was a big help. Once the baby was out, my husband went to be with the nurse and see him get cleaned, weighed and wrapped. We were told by... [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Hey guys! Just thought I would update you, I went to breach clinic and well he's still breach! I'm 35 weeks now and she said more likely than not he'll stay breach but may still move around so no clear answered there, I went to my surgeon however and asked him what he thought and he said if you want the ileostomy reversed in the future (which I said I really did want) then he wants me to have a c section and it was no questions asked he said if during a normal vaginal birth I was to get a... [ more ]
One thing I failed to mention. If this babe stays breech and you have a c-section, you'll likely have a c-section for the next one. VBAC (vaginal birth after c-section) has fallen out of favor. When I had mine back in 1987, it was popular and considered safe. But, c-sections have become so safe, they are safer than VBAC. So, OBs advise against it now. Maybe in the UK it is different though. Jan [ more ]
2 planned c-sections with my perm ileo. Totally uneventful. Much easier recovery than from my intestinal surgeries. [ more ]
See all 6 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I also agree with Jan- we did the "didn't try, didn't protect" for a year, but then once we really started actively trying (with temping and charting) I only waited 6 months to see a fertility specialist and get tested. Since my tubes were open, we decided to wait another 8 months of actively trying before we actually started treatment (testing was covered under my insurance, but treatment was OOP). As everyone is mentioning, J-pouch does increase your chance of infertility (you can search... [ more ]
What Jan said, 100%. 6 months of targeted trying (with temping and charting) and no results, go to a fertility specialist. [ more ]
Although I'm not planning to become pregnant, my surgeon cautioned me as a general caveat that given the history, to seek assistance after 3 months of trying. He did say that that we have as much as a 40% increased chance of infertility due to the pouch surgery, and that there has been more and more research pointing to this in recent years. Though you are still quite young, I wouldn't wait if you are really hoping to become pregnant. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I came home with a nasty UTI after each surgery (catheter) and now I have a tendency to get them pretty easily. When I do have a mild one, I'm usually tipped off because I have that same urge to urinate, but then there's the unexpected delay. Maybe check in with your GP or gynecologist/ urinologist to see if that's the problem - then it's a quick fix. [ more ]
Thanks for the tips Jan & Sharon. You make a good point about a possible UTI or mild irritation of some sort. It doesn't hurt like a typical UTI. But us jpouches are weird. When I was pregnant I got a full-blown kidney infection. My doc said I probably had a UTI first that went untreated and then spread to the kidneys. It was bad too - I lost 20 lbs and was off my feet for 2 weeks. Luckily a prescription of bactrim kicked that pretty quick, considering how bad it was. But it makes me... [ more ]
A sudden case of shy bladder? I used to get blocked when I had to pee in public places, in hospitals or post op...my mom would have to turn on the water to get my brain to convince my bladder to 'let go'...still happens at the oddest times, even at home every now and then...usually means that something is either irritated down there (took a bubble bath, used the wrong soap, hubby been a bit too enthusiatic ...)...it isn't exactly full blown cystitis (although I did get a bout this yr for the... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Thank you for your response. I have now scheduled a time with my gynecologist. Sharon, I also tend to be an optimist in that exact way I am glad to say, that it does not hurt, when I make love, but something is up. Now I am getting constipation-symptoms again - also "normal" when I now have my periods. [ more ]
I agree with Jan...if it is before every period then something is brewing in there...and your period is aggravating it...I am going to ask a stupid question...is it worse during love-making? One of the signs of fibroids and cysts was that sex was horrific...it felt like a knife in there...I avoided relations for quite a while due to the pain and ended up calling the GYN after about 6 months (I am an optimist...kept hoping that it would just go away...it didn't)...so I found out that I had... [ more ]
My advice is that any time you have a new symptom that is both persistent and troubling, you need to inform your doctor about it. It could be nothing; just an adhesion that is pulling when your uterus is swelling from the growing lining before your period. Or it could be endometriosis, fibroids, any number of things that need attention. The fact that this is relatively new and recurrent/persistent, means you need to get to the bottom of it. Jan [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
This is common both with us j-pouchers, and in the general population. If you do a search here, you'll find that it is a common question. So, don't feel that it is a silly concern. Basically, when you are on or around your period, there are prostaglandins produced that cause stimulation/cramping of the muscles in the uterus, and it also affects the gut. This is why they prescribe ibuprofen for menstrual cramps. It inhibits prostaglandins. If you tolerate it, you can try some during those few... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
Upwards of 50% of women have infertility issues after J pouch creation. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1860095/ I was able to conceive one child naturally after my J pouch (in 2001, when my pouch was 10 years old)... Had a C section and one year later had an open removal of a large ovarian cyst. My surgeon for that was an infertility specialist, and he said my daughter was "an act of divine intervention," and no way should I have been able to conceive naturally (so much scar... [ more ]
I am just seeing my OB doctor. [ more ]
I would suggest getting a test called an HSG as soon as you can. This would determine if there is spillage from your tubes and let you know whether it is tubal factor or not (which us j-pouchers are at a risk for because of possible scar tissue). I am sure that your doctor will suggest this, among several other things, during your appointment. Are you seeing a reproductive endocrinologist? [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
TalkingTina, Have you been assessed as a candidate for uterine artery embolization -- a less invasive for fibroids procedure done by an interventional radiologist? I, too, have multiple fibroids, one of which is huge and becoming necrotic. My GI surgeon told me to avoid more abdominal surgery at all costs, so I was evaluated for UAE, but unfortunately because of the size, location, symptoms of my fibroids was not seen as good candidate for it. My gyno worried about the adhesions as well --... [ more ]
So sorry that you have to deal with this plus all of the pain... A couple of quesitons...was it to be open surgery or laporoscopic? If it was open surgery then I can understand the difficulty in both the problem of cutting through the adhesions and creating more...you may wish to contact a laporoscopic specialist who might be able to do it without opening you up...some will and some will be daunted by the adhesions... Have they already tried hormone therapy to shrink them? I am not sure what... [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
❤️
I was married for my first operation, the colectomy, but my wife couldn’t handle the scars and the ileostomy I had, so divorce happened, and I thought my sex life was over. I had my J pouch a couple of years later, and since then I’ve dated several different partners. It was a little awkward with most of them, as there are some things I just can’t do any more – can’t sleep naked, can’t sleep through the night without getting up, that kinda thing. Also, I’ve found that my stamina for long... [ more ]
Just give oral...always satisfies me..lol [ more ]
See all 44 replies...
J-Pouch ForumsWomen's Health & Pregnancy
We could only afford to do IVF once. We had 3 viable embryos and couldn't afford to do FET so we put all 3 in. One is my son, who is now four. If it had not worked, and odds were not in my favor that it would (40% success rate), we would have gone on to a happy childless life. We spent 3 years and $15K on fertility and IVF was the last stop before moving on with our lives and finding other ways to be happy and fulfilled. [ more ]
Hi girls I read this and HAD to comment I have had 5 IVF goes. Two didnt make transfer as one was abandoned as I didn't respond to the meds and one I just did got all The way to egg collection etc but no embryos survived to transfer So I had 3 out of 5 that made transfer. I had one missed miscarriage detected at 9 weeks (saw heartbeat at 6w5d) and one chemical and one negative. I heard about the NK Cells (natural killer cells) and cytokines so I had mine checked and both were elevated. [ more ]
I´m glad it all worked out for you And thanks for the good luck - I do need much of that right now [ more ]
See all 22 replies...
J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
Wow Jan, Congratulations! It only goes to prove that some of us can still last through it all...you are a great example. Sharon [ more ]
I agree, plus, if you wait until you are both on the same page, it never would happen. My libido has waned since menopause,but somehow my husband manages to push the right buttons to raise my interest. Part of a good marriage is being receptive to the other's needs. You don't have to sacrifice or be a martyr. 37 years next week! Jan [ more ]
I'm not talking about sex when you are in pain or ill, but when you are mostly better. My husband has to live with my pouch related issues and a poor immune system that means I end up in bed for a week for a simple cold. I just think that when I'm finally feeling okay, but not yet in the mood for sex, he should get something in life that he enjoys. Not just working and looking after the house and family. I don't think it is sexist, just loving my husband. I know our husbands are annoying and... [ more ]
See all 16 replies...
J-Pouch ForumsWomen's Health & Pregnancy
your body will let you know when you are ready. we also had a 2 year old daughter and were ready for our second. we waited 6 months and were blessed to get pregnant right away. [ more ]
Although I haven't yet tried, so I am sure I am not the best person to offer advice, my surgeon said 2 weeks after takedown we were safe to try! I thought he was crazy at the time, no way I was going to feel ready for all that after 2 weeks. lol.. But that is what he swears by. I have heard quite a few others say 6 months? Best of luck to you! [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
You could also try taking cranberry extract capsules on a daily basis in an attempt to prevent the UTI's, along with lots of water. [ more ]
Are you using tampons by any chance? I wonder if perhaps the string is getting soiled during BMs and that is transferring bacteria to your urinary tract... I don't know, just a random theory! [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I hate having a pouch & a period!! During that time of the month. I found that a heating pad helps me and eating a BRATs diet. But sometimes it just stinks being a women. Thanks for asking this question. I'm only 2 months post takedown and was wondering if the periods get any easier!?! Thanks [ more ]
Im with Sharon on this. I am also gluten free, which has helped a lot. I try to keep it super basic. No complex foods!! Put the cookies down, they wont help! I swear [ more ]
Well, I'm only a little over a month post-takedown so I'm not sure if I answer is relevant since it could change... but I still have to use the bathroom every, maybe 1.5 hrs? Obviously shorter time frame if I've just eaten. I don't know if that's normal or not. Without the immodium, I just have a constant feeling of urgency - well, worse than it is right now, lol. Though during my period, I get cramped up so I don't have the feeling of urgency as much. I've noticed most people on here just... [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
You might be able to get the IUIs waived as I did - talk to your dr about it. If they think the egg and sperm aren't meeting from scar tissue, that doesn't get solved with IUI. If you do IUI, I strongly recommend that you monitor the fertilization process through ultrasound to reduce the risk of higher order multiples. So check prior to insemination how many follicles have developed to get an estimate of how many potential embryos you have. If you have 6 strong follicles of similar size, you... [ more ]
Thanks for the info. My insurance covers 3 rounds of iui before they will cover ivf so ill start with the iui and hope for results!! [ more ]
I agree with skipping IUI. LIke you I had perfect HSG and my husband had no issues. Same assumption as your dr - scar tissue keeping things from meeting up. I was told the chance of success with IUI for "regular" people was 10% but for me they felt it would be about 1%. Add to that the risk of higher order multiples (they were ok with me carrying twins but not more), my drs recommended skipping IUI altogether. In my state IVF is covered if you do 6 IUIS but I got approval to skip over all of... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I managed really well with chronic pouchitis. I was using Cipro mainly prior to getting pregnant. I switched to Augmentin (probably your best bet for a safe and effective antibiotic you can take throughout), got pregnant, and took a low dose my entire pregnancy and 6 months of nursing. it basically stopped working for me at that point. i used flagyl once during the pregnancy toward the end, but it never really worked well for me. it is considered safe in the 2nd and 3rd trimesters as jill... [ more ]
Cipro is generally discouraged during pregnancy as it is a Class C drug and they really have no data on it's impact during pregnancy. Flagyl is usually considered ok, preferably after 1st trimester, but I think some folks here took it throughout. As with any meds, the health of the mother is weighed against the potential impact to the baby. I would recommend managing your pouchitis with the least problematic meds possible, even now, so that during pregnancy you don't have to suddenly switch. [ more ]
I got pregnant with chronic pouch it's. I took mostly Augmentin (Clavulin) throughout. It was tough, I wasn't well, but now have a beautiful, healthy baby boy ! Good luck [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
As for immune testing, I never looked into it. If your doctor is willing to test, I say go for it. I guess also make sure you insurance covers it. [ more ]
Sorry you had such a poor outcome as far as fertilization. My clinic does ICSI a lot. 7 of the 9 blasts we had were a result of ICSI. I know there is a lot of controversy over this method, but I'm glad they used it for me. My husband has a greater amount of irregular shaped sperm. lol. [ more ]
Thanks so much Andrea, I'm so happy for you! Your post gives me hope It was a tough cycle. They retrieved 12 mature "good" eggs with only 2 fertilizing on their own. They called me the morning after asking if we wanted to do rescue icsi, which we did. However the rescue icsi has a way lower fertilization rate, so only 3 of the 10 fertilized and none of them were in good enough shape to freeze, which is why they did the 3 day transfer of a nice 8 cell embryo. I'm sure the RE is going to... [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
A bad situation that will probably take a while to heal...you need to become 'creative' in the bedroom until it is resolved and as for the pregnancy issue, well that can happen in different ways...I wouldn't allow the fistula to stop you from having enjoyment with your hubby just 'differently' until things settle down. With all of my k pouch surgeries I have needed to learn a different set of sexual codes in order to keep our love life alive over the years...it was difficult to at first tell... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
I know we already talked via PM, but thanks again for getting back to me. I'm thrilled the doctor I ended up picking is the same one you had. When he spoke of previous pouch patients, he was obviously talking about you! [ more ]
Gah, I am so sorry I just saw this! I haven't been logging on as much. Did you find a doctor? I went to Abdelaziz Saleh and LOVED LOVED LOVED him. He is a high-risk/MFM specialist out of Fairview, which is a facility very well equipped to deal with high-risk moms like us pouchers. Dr. Saleh is very smart and listened to all my concerns. With his input and after some discussion, we both agreed that we wanted a colo-rectal surgeon to assist at my c-section. I found a guy who practiced out of... [ more ]
I think every RE has their own preference. Shots definitely aren't fun but with FETs in our clinic, we have our patients do suppositories 3 times a day so that is no picnic as well. [ more ]
See all 10 replies...
J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
The waiting is the worst. Try to find some things to do to pass the time. Fingers crossed for some good numbers and then you will have a little time before the next wait - the ultrasound...the whole process is lots of waiting. End result is worth it though! [ more ]
Thanks Jill! I can still hardly believe it! I'm a bit concerned today though because I have some brown spotting. I know it can be normal, but it still worries me. Next week's beta can't come soon enough. [ more ]
No dr recommendations, but lots of congrats! You must be so excited! I had two IVF pregnancies and my babies are now 5 and 7 1/2! [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I had rectal and vaginal pain. I had nerve damage that caused the vaginal pain and getting the inflammation under control and getting my fistula healed up helped. I have been going to a physical therapist for the pelvic pain and between humira and the PT it is a lot better. But first you have to figure out the cause. [ more ]
Thank you. I'm going to check on that! [ more ]
Hi! Are there any free health clinics in your area of the country? Maybe google and see if there are any. Wish you the best. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
"Get a sex change?" Really!?! Glad you have a new GI, since that is a particularly unhelpful response. Hopefully, he was kidding, but geeze, I don't mind a little office humor, but unless it was offered with some useful advice... Hope the Pill works. I found it useful when I had my colon, but had flares during pregnancy. They were mild flares though. Maybe the patch would be OK for those who can't go back on the Pill. Jan [ more ]
I have the same thing and have more recently noticed this trend sometime over the last few years. I also get extremely sharp pains and palpable balls (of gas?). I had asked my GI about it and he said "get a sex change". I have a new GI now and he consulted with my GP who now has me on the pill just 3 days ago. I hope to have good news in a month. What did your doctor say at your appointment on the 25th? [ more ]
For whatever it's worth (possibly not much since I'm only 4.5 weeks after takedown), my stools have randomly been bloody during my period too! I have been worried about the blood but after reading what you guys posted, I'm thinking it's just the period thing and realized the blood correlated with the start of my period. My pouch is "angry" too so many it's just common like all the other symptoms. Thanks for sharing! Though I'll know to get it checked out if it sticks around after my period... [ more ]
See all 6 replies...
J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsWomen's Health & Pregnancy
I have been checked out for crohns several times - no sign of it thank goodness. My fistula started as an abscess from severe cuffitis. Haven't had many symptoms still so hoping, praying I am in the clear. Maybe to good to be true.. [ more ]
my symptoms pop us right after my period. it comes and goes. it could be a peri anal fistula or just a tiny one that plays peek a boo. have you considered that you might have crohns [ more ]
Thank you Rachel. My symptoms actually seemed to have calmed down a bit today (who knows though!) but I am still going to ask for an MRI. Ughh..... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
this is normal. the inflammation will go down and it will feel normal again given time. [ more ]
I totally have the same experience. It's like the angle changed. It's the same way with anything that happens to be down in that region... I actually got the IUC (Mirena) because I was highly anemic anyways and the loss of blood every month didn't help, plus dealing with my period became a whole new can of worms with the inability to use tampons and the flare that would often start. [ more ]
Hi Liz, Yes, way back when, when I still had a period ( ) I used to feel 'heavy' back there (and I no longer have a rectum!), felt like a 5lb. bag of jello sitting in there and rolling around whenever I got up to walk or move around...It also felt like my uterus was going to drop out of my body but maybe that was just me ! I kind of got used to it and recognised the feeling...pre-period was achy-breaky-back, heavy Barbie-butt, sloppy-floppy uterus...fun! (I also found it much more difficult... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I had this happen at about 17 weeks with my first pregnancy. It is usually when the uterus starts to expand and pushes an adhesion that blocks the intestine. If your pain is manageable and you are able to keep down liquids, you probably don't need the ER right away, but I wouldn't wait too long if this continues. As for what they can do, not much except monitor it, give you some pain meds if you want them, check to be sure the baby is ok. My obstruction lasted about 6 weeks - required 2... [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
I just had an in office quickie manual dilation. Owie. But luckily things are doing pretty alright... Too bad my stinking fistula hasn't matured yet (I knew it'd take longer than a month). I know my CRS knows what he's doing, but man, his exams are wicked stuff. [ more ]
What I suspect is that you had a stricture developing and your GYN exam turned into a manual stricture dilation. Your symptoms sound very much like people who had forceful digital dilations without sedation. I sure can understand the pain, since there are oodles of sensory nerves in the anal canal. Doing the self dilation should help keep the stricture from reforming, so that is a good thing. Hope all your treatments help. I agree that your GYN should have stopped if she felt resistance. You... [ more ]
Geez. What sort of exam did she do? I've had to have rectals for various reasons over the years since I got my pouch, and everyone was gentle, and would even use a smaller finger to be safer sometimes. It's not that you can NEVER have an exam (my surgeon does exams... I've had scopes... I've had dilations and EUAs), but they need to be gentle ones. [ more ]
See all 16 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Actually, I was the one with UC first. Age 15, very severe pancolitis. My husband was diagnosed around age 45, left sided colitis, after we had children, and after my colectomy. I have one son with colitis (pancolitis), diagnosed at age 20. He quickly responded to IV steroids and has been in remission for about 5 years. We just know he will be able to deal with UC in stride, just as his parents do. While they are learning all the time more and more about the genetics of IBD (Crohn's has more... [ more ]
I have Crohn's so although none of my 7 siblings have been affected by it I have told them that they should not tempt fate by dating people who have inflamm. bowel disease. Having been through what we go through it is highly emotional thinking that our children are experiencing that type of pain. However, I think it is only fitting that people with IBD have kids with it because they have such a base of knowledge. I still say I would want my kid to get sick over a kid with parents with no... [ more ]
My understanding is (if I'm remembering correctly) that I think it's around a 10-15% chance if one parent is affected and around 35% for both parents. Don't quote me though since those are at the top of my head. If my opinion matters at all though, marriage is tough. Marry who you love. And I'm sure being with someone who gets a lot of this is a huge support. While my husband is loving and great and what not, he has still never really gotten it... and it can be tough a lot of the time. [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Ginger, I had my k pouch done at 18, back in '79, when no one talked about fertility or other issues other than survival and success/failure rates...so babies were not their priority. I married the following year, tried naturally for 1yr and then started the horrors of infertility docs in the '80's...IVF docs wouldn't touch me back then, the HSG showed a mess inside of me and generally nobody gave me any hope. We opted for adoption, got pregnant and miscarried...happened a couple of times... [ more ]
I'm so sorry you were painted such a horrible picture. You don't seem to be getting the most accurate information. The truth of the matter is pregnancy with a j-pouch is not all that different than with a colon. As mentioned earlier, you MAY have some issues conceiving (blocked tubes, scar tissue), but once you get pregnant, there shouldn't be a whole lot more to worry about than the normal pregnancy concerns. I've never heard about issues of damaging or rupturing the j-pouch. I didn't have... [ more ]
Well, I think the dr could have been a bit more thoughtful in how he approached telling you all this... Here is the thing...There are risks. But there are in a "normal" pregnancy too. Being a parent requires a huge leap of faith, j-pouch or not. THe real risk of vaginal delivery has nothing to do with damage to the pouch - sure its possible but highly unlikely. The risk of vaginal delivery has to do with longer term issues and the potential for weakening the sphincter muscles. As for... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I had almost no fistula symptoms once a seton drain was placed. Also, the seton really did not bother me at all - I never felt it. It was more just the idea of what and where is was that bothered me. [ more ]
Thanks CJ. I thought thickening things might help as well. I may have to try Metamucil. [ more ]
Hi, I have had my small RV fistula for about 4 years now. My surgeon (and I) prefer not to mess with my otherwise perfect pouch. I had my pouch for about 12 years before I developed the fistula. I have no problems leaving it alone, as long as it leaves me alone also I take one large teaspoon of metamucil each morning to thicken things up. It greatly reduces any seepage through the fistula tract. I notice a big difference on days that I don't take it. Feel free to ask me any questions. CJ [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Thanks ladies, this feedback is really useful. I took him to the doctor who said I was doing the right thing, using thrush cream on his bottom. They can't be certain it's actually thrush without doing a swab and they can't do a swab when he is using thrush cream so the plan is to use the cream for 2 weeks and if still no better, then stop use and get a swab done. I am seeing my bowel doctors next Monday so will cover off issues about breastfeeding on antibiotics just in case it is thrush. [ more ]
I am still breastfeeding my 5 month old on long term Augmentin. I give him probiotic drops, seems to help. I use this kind http://www.walgreens.com/store...=prod6083377-product - I'm sure something similar will be available in the UK. Good luck! [ more ]
That's a good thought. A probiotic for maintenance might be good, after you get the thrush under control. [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
I had a csection 5 months ago and it was pretty easy, ESP after surviving the jpouch! I drove again after about 3-4 weeks. I had a general and there were no issues. Loving taking care of him! Just focus on the outcome! I hope it all goes really well - good luck to you ! [ more ]
I had my c-section before my j-pouch, so can't speak to that, other than after the c-section, it was the first time in my life I was constipated! I remember during my c-section (I had an epidural), I was blabbing the whole time, saying dumb things like, "That feels like the retractors are in." My OB had the anesthesiologist give me a big dose of valium as soon as my son was delivered, I think to shut me up... You'll be fine! Jan [ more ]
It's generally 6 weeks before you can drive, so you should be prepared for that. As for the c-section, it is weird, but doesn't hurt. It feels like pulling and pushing, but no pain. The key is not thinking about what they are doing. I think whatever they give you to block the pain also makes you a little "happy" as I remember being fully awake and aware, but a bit dreamy. [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
You both have been so helpful! I was 15 when I got sick and while I knew that "one day" I would be getting married and having children it was not in the foreseeable future. That time has arrived and I want to be as prepared as I can be just in case any complications or any unexpected situations arise. Thank you both! I'm sure I'll be in touch throughout the next couple of years as we start to work on getting pregnant. [ more ]
BTW - I met with Dr Cohen before I got pregnant to discuss my situation with him. He was great. He even contacted one of his previous ostomy patients to see if she would talk with me and I did that. It was very helpful and reassuring. [ more ]
Hi Ladies, I am currently 5 mos pregnant and 6 1/2 mos post take down, we got pregnant a LOT faster than anticipated. We interviewed an OB to find what was best for us. I am seeing a regular OB and mid-wife combo through my doctors office. I find that having two advocates for me and my little one is helpful. I asked if they thought I would need a high risk OB due to my unique plumbing now that I have no large bowel and they felt confident they could work with me. If a problem should arise I... [ more ]
See all 6 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Can't speak to pregnancy, since I adopted both my kiddos, but rectal pressure is a hallmark symptom for pouchitis for me-100% of the time I have experienced rectal pressure it has been pouchitis and when I have pouchitis I have this symptom is present 90% of the time. If the Flagyl is going to work, I usually find it works very quickly. Best of luck to you! [ more ]
So i seen an GP at my doctors office and he started me on flagly. I see my regular doc today. My other concerns is that i seem to have constant rectal pressure. When i stand up it can be quite painful and sometimes sharp. I have not had this with other bouts of pouchitis. Anyone expierence something similar? [ more ]
I had pouchitis the entire pregnancy - it was a real issue and in the end we struggled to find the right antibiotic. It was watery every couple of hours. You seriously do not want to get dehydrated so why not see your doctor? Sounds like it could be pouchitis. Good luck and congratulations! [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Both the lumps are now gone. Whew! [ more ]
Thank you, Sharon. Sharing your experience with this is so helpful. I still worry about having another darn fistula, but will be patient and use the compresses, etc., for another few days. [ more ]
Basically, if you touch it, squeeze it or bug it then it will get inflamed or worse...if you do what you are doing, depending on the stage and 'ripeness' of it then it will either dry itself out (meaning disapear) or open up and seep/ouze...either way, as long as it shrinks or disapears then it is all good...if not...you need to call the doc... It does take up to a week to see a change some times...So be patient. Sharon [ more ]
See all 7 replies...
Join Us!
Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
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.
Forum moderator and advisor
Jan Dollar R.N.
General Disclaimer
- This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.
Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).
Confidentiality
Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.
The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100
National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440 800-343-3637
Already a member? Sign In