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J-Pouch ForumsWomen's Health & Pregnancy
Don't have hysterectomy!
M Mo
Mo Oh, and my CR surgeon is located at Jefferson university. I've always liked him and I wish I had my hysterectomy there instead of the other hospital. [ more ]
Mo Hi ladies I keep forgetting my password! Anyway, here is an update. My ileostomy reversal surgery was cancelled because I'm still in pain. CT scan showed a 5.2 cm abdominal cyst. Do t know where since j have no ovaries. It did not show on ultrasound. The tech said she just thought it was too deep behind too much stuff. CR surgeon to review everything and call me tomorrow with plan. He mentioned aspirating cyst. Do you think this can be done at same tone as reversal? Also they did endoscopy... [ more ]
itsnotsherry My colorectal surgeon assisted in my hysterectomy. That is one of the pluses of going to a hospital like the Cleveland Clinic, where all of the doctors work together. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pouch after C-Section, will it go back to normal??
R Rhonda84
mom2panda My c-sections were before my jpouch surgery but it did take a while for my bowels to wake up. Have you tried adding some Metamucil? 1 tsp 2x per day and see how you do. And as others have said, reduce your pain meds as much as possible. Regular tylenol is okay, but try to get off any narcotics you're on. Good luck. Hope it gets better soon. Congrats on the baby. [ more ]
rockandroller It's normal, and so is the gas pain. Cut down on any pain meds as much as you can tolerate. That horrible burning pain where your incision is when you try to push WILL go away, but it takes awhile. If you can get into a position (sorry, weird) where you are on the floor with your ass up in the air, like a downward dog type pose, that can release the gas a little sometimes. What really works is the plow position (you can google that) but that would be really painful on a fresh incision. Hang... [ more ]
rachelraven Bowels hate to be touched during surgery, and often get quite sluggish for a time thereafter. It's called an ileus. I had an ileus after my colectomy/J pouch formation/loop ileostomy, and it was one of the most painful of things ever. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Back to ileostomy
ClickyClicky
hart155 my boys are 5 and 2 and so far have never needed any extra protection for my stoma. Seems that the bag and at least a layer of clothing is more than enough. [ more ]
JillM Congrats on your decision! When I went back to the ileo, life started again. 12 years and going strong! Your choice of course, but I've never done anything special to protect my stoma. I carried two babies with my ileo, and then toted them around and never had any issues with injury to my stoma. Stoma has been kicked, rolled on, sat on, patted, rubbed, you name it. Never any problems. Even when carrying toddlers and their legs and feet dangled right at stoma level, no problems. I am totally... [ more ]
mgmt10 Best wishes for a speedy recovery from your surgery. Enjoy that baby...time goes by so fast with them! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnant w/ ostomy
boogiemomzboogiemomz
boogiemomz Thank you ladies! Jill, I actually find your story pretty inspiring (well, your attitude about it anyway ), but I worry more about my husband. He is extremely fearful about all the horrible things he thinks might happen, and if I ended up hospitalized with an obstruction, well I'm pretty sure he would totally decompensate. I have learned to take more of the attitude you describe--don't worry until you have something to worry about, and when you do, keep the faith that good outcomes are... [ more ]
NJK Congrats!!!! I don't have anything to offer but I am so happy for you. [ more ]
JillM Aw, don't get scared by my story! Even though it was stressful, the end result was fine - no surgery, perfect healthy baby. And my second pregnancy I had no problems. So, who knows? Maybe you'll get through without any issues in spite of adhesions. And if not, you can come out the other side no worse for the wear. Try to enjoy this time as much as possible. Congrats! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pudendal Neuralgia
N NJK
Living ❤️
NJK If you can find a pelvic pain physical therapist I encourage you to go to one. I am finding it helpful while I wait for the medical doctor who specializes in this. [ more ]
KelseyHey2308 I just found out I had this! I've been getting nerve injections and doing acupuncture to help it, I just posted my story under General Discussion if you wanna take a look [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
need for high risk OB??
stellstell
rockandroller I saw a regular OB for the first trimester, but sought him out because of his experience with 2 previous j-pouch patients. The hospital he was in closed down his office abruptly and I had to find a new doctor, so I went to a high-risk guy and was very glad I did. I felt I got the extra care my "different" pregnancy needed and he agreed with my suggestion that we have a colo-rectal surgeon consult on the C-section, which I was also glad about. [ more ]
JillM I was the opposite - I had a high risk dr and was sooo glad I did as I had a near total obstruction during my first pregnancy and it was day to day if I might need surgery at 22 weeks. I kept the high risk dr for pregnancy 2 but had no problems. [ more ]
Clicky I had one - but then I was quite unwell the whole time with pouchitis that was not controlled and spinal cord issues. It's proboably not necessary but you do want an OB with some Jpouch experience. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
scope and pregnancy?
stellstell
Clicky I had a scope at 6 months and even laser treatment but I had very severe bleeding. They offered me sedation but I refused and all was fine! Not unless desperate I would say. [ more ]
stell Hi Kathy, guess you will be seeing me more here again. So surprised to see you, I was looking around and didnt recognize anyone's name except Jan of course. Yes Jaime is a flight attendent now for Jet Blue here on the east coast. She left Alaska Air to return home. Glad to see old friends, you too Jan. [ more ]
Jan Dollar Even when I still had my colon, they would not scope during pregnancy, not even a sigmoidoscopy without sedation. I was having UC flares during pregnancy too, but they just treated the disease without invasive scopes. Unless there is an urgent need I see no point in the risk. What GI is going to want to assume the risk of potentially disrupting a pregnancy just for a looky-loo? No doctor with brain cells to rub together. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Want a baby, but scared
K Kaitf
rachelraven My first go round to try to get pregnant didn't take long... started trying in January, pregnant by September (I was 30 years old). I had a scheduled C section, approved by my surgeon. I know women have delivered vaginally with a J pouch, but I was just too nervous about that creating any continence issues, or tearing into that area, or whatever. I had no issues with that. I read a study that said that 52% of women after J pouch surgery have issues with conceiving. A year after my daughter,... [ more ]
clz81 Your body should handle pregnancy just fine. Some women have difficulty getting pregnant, but your pregnancy shouldn't be all that different than someone with a colon. Just a few more bathroom trips especially in the 3rd trimester. If you are ready, I would suggest starting earlier. It could take you awhile, and women's fertility take a drop at 29-30 and then again mid 30s. Good luck to you! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Bartholin cyst infected or fistula?
J Jpoucher4life
Uc-Danielle They think it is acting like crohns but isn't: they are treatin me liked have it. It hasn't gone away. I'm on cipro, tinidazole, and humira. Also with Euas but I haven't had one since April. It's crazy how similar they are [ more ]
Jpoucher4life Danielle, our stories are very similar!! Is your Dr. thinking crohns or not because it was pretty close to your surgery date? [ more ]
Uc-Danielle And I've had this since September and its still open. An extra hole down there vi hope yours isn't as painful as mine. It's like sitting on razor blades! It's really weird how your story is soo similar to what happened to me [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
First Fistula. Need advice.
LizzLizz
Ginabello Hi Lizz how was your fistula confirmed? When you say it hasn't given you any problems what symptoms do you have? I am waiting to hear on a surgery date for a possible fistula if found i will have a seton put in.. I had a pelvic MRI a little over a week ago and it showed inflammation where my abcess that was surgically drained is.. I really thought the MRI would confirm yes or no but not my luck): [ more ]
clouseau Lizz, You will make it through this fine. I was just at CC with Shen and Remzi for my vaginal fistula and yes I have Crohns also. My fistula hasn't caused problems yet so we are going to hold off doing anything until I have issues. I'm on cipro and tintazole and occasionally take pepto bismol instead of the tintazole so I am on less anti-biotics. You couldn't be under better care than with those 2. I will be thinking of you and wishing you the very best. [ more ]
Uc-Danielle nJk- I was just told that they can be uc related also from The dr that came in my room which I didn't know but I don't know a lot! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Fistula, incontinence, pouchitis, cuffitis - any hope?
ClickyClicky
clouseau First of all Clicky my thoughts are with you. I was not able to have children because of all my scar tissue from surgeries so please, be so thankful for that child, you are very fortunate in that regard. I have been lucky that my vaginal fistula hasn't had any issues yet. Everyone on this board is so wonderful with sharing and I feel so blessed to have found you all. I just wish there was something more I could do to help everyone else. [ more ]
vstRN Yes, my surgeon and GI both believe that the cuffitis was the cause - it was reeeeeally bad. To tell you the truth, I should never have been reversed to begin with and had the mucosectomy right away. The pouch advancement surgery was actually the easiest surgery I have had yet. I was prepared for the worst, actually terrified of it, but really, it was a piece of cake. My surgeon was able to do it all transanally though which is why I had such an easy time with it. He had initially given me a... [ more ]
Colleen2001 Hi Clicky, You have a right to feel sorry for yourself right now, so don't feel guilty on top of it. I had an RV fistula that I had repaired last year, and opted for an ileostomy until everything healed. I did not have an infant, but two young children, so know how hard it is to leave them. I was so glad I had the temp ileo. I felt so much better, gained weight (which I still haven't lost), ate what I wanted, etc. I was happier, healthier, and a better Mom because of it. It's worth the... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy Question
F FrustratedButFighting
FrustratedButFighting Jess- first off, congratulations on being pregnant!! Best of luck and continued prayers to you thought the remainder of your pregnancy! Aside from that, thank you so much for sharing your good news. It's so nice to be reminded of the positive stories, especially in our situations. Luckily I am on now meds now other than the vitamins and probiotics I voluntarily take- so hopefully that will help! Keep us updated on your progress. [ more ]
JessGoguen I am very late to the party but.... I was a told it would depend on how sick you are going in and how many meds you were on and for how long. I had my initial surgery Sept 12 and takedown Dec 4. At my follow up in Jan we were cleared to try and I am happy to say I am now pregnant. [ more ]
Jan Dollar Pregnancy was a cake-walk for me (granted, it was before my j-pouch, but I had UC flares with both). It was the next 18 years AFTER delivery that was the real challenge! At least in utero that kid will not be running down the block, playing "catch me if you can!" But seriously, go with your instincts. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
mirena side effects
S shawanna24
rachelraven I had the Mirena briefly, but hated it for other reasons (I'm super sensitive to hormones). But it never affected my pouch, though we're all different. They tell you it's " local hormone therapy," but it was more than that for me. Got it pulled and felt better in 3 days. Maybe the hormones are doing something to you? [ more ]
tammykathleen Hi Shawanna I've had the Mirena for 3 years now and I never had any worse of an issue after I had it implanted, but that's just me. It is much easier for me not having any period which caused alot of hormonal flares. I would give it a week and if it's still worse, maybe it's a pouchitis flare? Try some cipro? I hope you feel better soon! ~Tammy [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnant and nervous
HG helen garner
Patricia Walker Hello I have not got around to reading all the posts yet. I live in the UK Whitby N Yorks. I had my surgery for K pouch when I was 29 years. I had my son at the age of 40. not much known here then about my surgery but all went well. Had a super baby boy 7lb 6ozs. Pregnancy went fine. Normal birth (well forcepts). Just had problems after the birth due to coping with catheter etc., My son is now 26 and has had really good health and I have so much to be thankful for. Please try not to worry. [ more ]
helen garner Hi Sarah, I'm doing okay thank you how are you? Not long to go ) I'm trying to stop being a hypochondriac haha. It's really frustrating as I don't know what's normal and what's not, and obviously 'normal' is going to be different with a pouch too. The twingy pain I was having on my left side sort of subsided but I ended up having a blockage on Wednesday. My pouch just stopped being able to function. I'd actually forgotten what that was like to not be able to go! And I had quite a bit of abdo... [ more ]
Sarahbp55 Helen, hope you're ok? X [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Lack of menstrual cycle (since 2010)
K kvan
Jan Dollar Sometimes the trauma of surgery causes a premature menopause, and sometimes it is permanent. This is especially true if you are chronically ill or anemic. As to the bleeding/bruising issue, a first step is a full coagulation anel to see if something is missing. Rarely, this can be a sign of liver or bone marrow disease, so it is important to get this checked out. Jan [ more ]
PoucherInTO Hi kvan, I PM'd you! [ more ]
kvan I have not. I went to my family Dr Tuesday, she seemed to have no answers for the lack of menstrual cycles but did refer me to a vascular surgeon for the veins. I do not care what they look like though my issue is why are they bleeding? hopefully this doctor will provide some insight. She also said I may have a bleeding stomach ulcer. I now am sick with something, either pouchitis or food poisoning.. I don't think it is pouchitis because I am 23 days through a 30 day regimen of flagyl. sorry... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Not pregnant, would like to be someday...
KelseyHey2308KelseyHey2308
rachelraven I got pregnant naturally with my daughter within 9 months of trying. One year after her birth, I had a large mucous ovarian cyst removed, and the doctor (a fertility specialist) said she was "an act of divine intervention" because of all of my scar tissue. He predicted I wouldn't get pregnant naturally again, and I didn't... But we opted to stop trying and be happy with our one beautiful girl. He did say I was a good candidate for IVF, but we didn't go there. So it might happen for you. [ more ]
LC I totally get where you are coming from. I had my surgeries when I was a young teenager (14) and I don't think they ever told me about the infertility issues. Its also possible I didn't think of it because I was so sick and desperate. In either case, I always planned on having one or two kids but didn't seriously think about it until I got engaged to my husband and started to read about the statistics. Needless to say, I had a serious meltdown when I saw the numbers. My husband pointed out... [ more ]
Pluot For what it's worth, one of the surgeons I consulted with told me that the pregnancy rate is identical between women with j-pouch and without -- IF you take into account fertility treatments. So, in other words, it's true that you might need to use fertility treatments, but in the end you're just as likely to be able to get pregnant somehow as someone who hasn't had a few abdominal surgeries. Like everyone else has said, you really can't start worrying until you try. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
How long do you have to wait to have sex again?
L LisaB827
Pluot I finally spoke to my surgeon's PA and she said "Whenever you feel ready" after pouch construction, the main issue being the healing incisions (along with libido, energy, etc). I specifically asked if there was any danger from "jostling the pouch" to the new anastomosis and she said definitely not. As an estimate she said she thought about 3 weeks post-op, or two weeks after discharge. [ more ]
skn69 A good indicator for me was my libido...I was not in much of a mood for love when I was post op (usually valve revision or full out pouch surgery but I have a k pouch) so my body and my libido were pretty much insync...it would take 4-6 weeks for me to even consider love making and another couple for me to feel 'safe'...that said, you really have to be ready for certain things to take time...some of us are miracles of biology and things work perfectly the first time out...others find that... [ more ]
FrustratedButFighting I know this is a little late- but my surgeon told me waiting 2 weeks was all I needed to do. He basically said at this point if I felt ready to, it was fine. Personally I waited 4 weeks because that was about the last thing I was interested in at the moment. lol But at 4 weeks all went fine so I think it is more important just to listen to your body and how it feels. Good luck! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
thinking about trying
C CallieD
JillM My situation was different as I had a perm ileo after failed j-pouch when I was pregnant, but some things would be the same...the scar is fine on the outside, but if you have adhesions on the inside you might feeling some pulling or in some cases get an obstruction (this happened to me). But all resolved and baby was fine and so was I ("baby" is now 7 ) Had a second baby 2 1/2 years later and that baby is almost 5 You should be fine post baby as far as the pouch goes. The biggest decision... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
burn from fistula horrible
N NJK
n/a Agree with the calmoseptine. It also helps to "contain" the drainage. I don't know where your fistula exits, but you might try covering it with a cotton round or gauze. This gets changed after every BM. [ more ]
LC If its not vaginal calmoseptine does wonders. I'm not sure what to do for a vaginal fistula. If you don't have calmoseptine I would try some other barrier ointment but calmoseptine is the best. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
started my period for the first time sunce takedown
lovedby2lovedby2
LisaB827 Thanks lovedby2! [ more ]
lovedby2 It did take 5 months, it was nice, but I have been in a flare up now for a month since starting. Not sure if my period is the cause but not looking forward to this becoming a norm. My GI said the 5 months was not concerning because of all that my body had been through. Good luck and find as much relief if you can. I experienced heavy bleeding More than usual bloating Sharp pains in the abdominal area Headaches Inflammation flare up Very tired Good luck and find thubgs [ more ]
LisaB827 It took 5 months before your period came? I'm 5 weeks post take-down, and I have been concerned since my period is 2 weeks late. My doctor did tell me it could take a few weeks before it comes, but I didn't expect it could take months. From the sounds of it, it looks like I have can look forward to much worse periods...At least now I'm prepared. Thanks for all the information ladies!! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
ovarian cyst=pain?
B beckysmom
beckysmom Thank you Jeane and Sharon. She is going to have to fit the ultrasound in and then follow up with the gyn. She had an appt to do this a month ago but all the GI tests and final exams came first. Thank you for the ideas. I will tell her about them so she can discuss them with her gyn. Hugs to you ladies! [ more ]
skn69 Yes, It could...but it doesn't always...I have had a few over the years and some were awful (especially during PMS, periods or sex) but I had a couple that just always hurt especially if I wore tight clothing (jeans) or was running around a lot (always)...so have it checked out by a gyn...also, on my hit parade of the most painful of gyn specialties would be salpangitis...where the fallopian tube is inflamed or infected...not always easy to catch on other exams...But it can be mind blowingly... [ more ]
jeane When I had an ovarian cysts (and I have had many on several different occasions), the only time I had pain was when one passed during my period (probably ruptured/burst at that time). The pain was acutely intense to the point of where I was almost vomiting and could not sit up straight and had to have a friend drive me home from work that day.It was horrible. I am not sure how big her cyst is and if it could be pressing on the abdomen to cause her pain or not. I do agree though that since... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
HSG test - what are the odds of blockage?
FM Former Member
skn69 So sorry for the lousy cards Sarah, Just a small possible light...some women have had their tube 'blown out' thanks to the HSG test...I wouldn't give percentages but it has been known to happen...so do not lose hope completely...how about a serogate? Is it possible where you live? Is it not less 'challenging' than adoption? (I have no idea, in my day and age adoption was nearly impossible and so much more expensive than a serogate)...I don't know US laws on it...here in France it is not... [ more ]
SarahG Hi ladies, Here's my update. Both tubes 100% blocked, pretty much like I thought, very devastating. Hubby and I are looking into adoption now over IVF due to insurance, funds, etc. Thanks for all the advice. Crappy cards to be dealt with IF after already dealing with UC, you know? [ more ]
rockandroller I could have written your exact post. AND my HSG was completely clear (it's no more painful than your first day of your period IMO, just sort of all at once instead of gradual cramping - my doc told me to take 4 ibu an hour beforehand). I got up and walked out and went to work no problem. The fact of the matter is, with cases like mine, the scar tissue displaces the ovaries so they are not immediately adjacent to the tubes as they should be. We didn't find this out til we started going... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Will I be able to?
BreannBreann
rockandroller Agree completely with JillM. I can't think he means your uterus will be compromised in such a way that you won't be able to have kids, but that he's speaking to the sometimes dramatically decreased ability to actually GET pregnant that comes with this surgery as a result of scar tissue that makes it difficult, which can block fallopian tubes, reposition/move ovaries away from the tubes, etc. This is why so many pouchers have resulted to IVF to get pregnant, but the vast majority that I'm... [ more ]
JillM Unless the dr is seeing something unusual in your case, I wouldn't think your chances are "slim" There are many of us here with j-pouches who have had children. Some have needed fertility treatments, some haven't. I have three friends with pouches who do not visit this site who had children without fertility treatments. I had four surgeries - two for j-pouch, one to disconnect and one to remove. I did need IVF but I have two kids ages 7 and 4 1/2. If I were you I would ask the dr for more... [ more ]
skn69 Hi Breann, I was a year older than you when I had mine done...-and that was just about my first question to the surgeon once he finally agreed to the surgery...will I be able to have kids? It was 33+ yrs ago and they really couldn't give me a strait answer back then but now, with so much experience...they can say, Probably..yes....but...(this is the biggie)...any abdominal surgery can gum things up inside of you (scar tissue, inflamation, organs being pushed around a bit)...so, although so... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Ovarian cyst ....
M magcher
beckysmom Sorry to hear about your pain Macgher. If I may ask, is your pain 24/7? My daughter has been in pain 24/7 since 5 weeks post op for a strictureplasty. In between the surgeries she has had, May pouch revision and Jan strictureplasty, the GYN was following her for a cyst on her ovary that showed up during a CT scan for pouch issues. She was suppose to get another pelvic ultrasound 2 months ago (gets them every 3-6 months to check on this cyst) but with the surgeries she hasn't been able to go. [ more ]
CeeeeCeeee My ovarian cysts were unusual, I guess. I had no pain, no symptoms at all. They just kept growing as measured by ultrasound every 6 months for about 3 years. Finally, my ObGyn said my ovaries and all of the other reproductive parts had to come out. Because of my J-pouch she sent me to a colleague who was an ObGyn surgeon who specialized in patients with cancer. He was sure I would be a breeze for a laparoscopic procedure. I had warned him my colorectal surgeon said that wouldn't work because... [ more ]
JillM Ovarian cysts hurt a lot. Even without a pouch. My cousin has horrible pain with them and has a normal GI system. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
trying to remain hopeful and positive
jenPrKrjenPrKr
rockandroller Lots of scar tissue is the norm for people who have had pouch surgery. Many of us have to go through fertility treatments or even surrogacy in attempts to have our own children, and some don't even want to consider those routes and adopt instead. If they didn't tell you there was something wrong with your uterus such as scar tissue in it that would prevent you from being able to carry to term, I would work on charting your cycles (try fertilityfriend.com) and try for another few months. If... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy
KR Katie R
jenPrKr Hello Katie! I have similar concerns....between my surgeries my right ovary and tube was disconnected. And I also have lots of scar tissue around the ovaries. I was told that it will be difficult to have children, but not impossible; Some of the reasoning is because of the internal damage from the surgeries but also because I stress out so easily, and because of that I will more than likely be on bed rest the majority of the pregnancy, and have to have a c-section. My husband and I have been... [ more ]
clz81 Here's my two cents based on your situation. I believe if you are feeling well, then why wait for something to go wrong. Take advantage of feeling well and hope for a healthy 9 months! However, if you are still dealing with a lot of meds and problems and feeling horrible, pregnancy is probably not something you want to jump into. You might have a totally wonderful, easy pregnancy, but a tough pregnancy can be really challenging even on the healthiest of people. If you are dealing with a ton... [ more ]
LoveLife PS: recent update: I spoke with the surgeon today, he knows my history just as well as the medicines. He said: 'I wouldn't be that worried. I am not God, though I sometimes would like to be, but based on my 25 years of experience I would say: go for it!' So my partner and I decided to wait another month to let my body restitute, and then go for it. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
C-S vs Vaginal Poll
ICCICC
magcher I had a baby when i was 16, easy vaginal delivery. I had my pouch surgery when i was 22. My next baby came along when i was 27. I decided to try for a natural birth , with no epidural so i could truly feel the pushing part. We did the rocking method , where they rocked me on my side to move the baby deeper into the birth canal to limit my pushing time. It was painfull, but he was out with one push and no complications other then some discomfort using the washroom for a couple weeks after. My... [ more ]
TE Marie ICC - Congratulations! I remember your potty Cake and am happy for your upcoming baby! It's nice to hear you've been doing so well. Please post and let us all know how everything goes. [ more ]
clz81 I had my pouch done was I 28 and had a vaginal birth when I just turned 30. That was about 20 months ago. I only had a first degree tear (no biggie). No issues with incontinence at all (unless a bad bout of pouchitis, but that's pretty rare for me). As Jan said about experience with prior deliveries, I went into labor knowing that I had an amazing experience with my daughter (which was pre-pouch). We monitored by son's head size and weight near the end to make sure he wouldn't be bigger than... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
NO Libido!
K KiwiPoucher
skn69 Thanks TE, He is doing so much better, house bound due to post op angioplasty requirements and a major snow storm here (yup, France got hit by a 'Canadian type' snow storm in March!, a historical almost first!)...so we are locked in and trying to recover...I feel like a skinned cat for now...All of my nerves exposed and screaming...the least amount of stress and I am off the Richter scale but I will be fine in the longrun...for now, we have to find our way back to each other and life...and... [ more ]
TE Marie Sharon, I hope he is doing better and that you are both feeling well. [ more ]
skn69 Funny but my greatest fear was that I would say no for so long that the day that I finally said yes, he wouldn't want to any more! Kind of put out the fires...well many years post op (not really the 1yr anniversary of my last surgery is tomorrow!) and I still worry...my libido comes and goes...so does his...and we have a hard time wanting each other at the same time of day/night/month...I miss the closeness that it brings to us but with all of the years of pain and suffering, hernias, leaky... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy and pouch pain
N NaomiLI
jpouch2008 Glad you are getting some reliefé I am in a similar situation and my GI just told me I have a fissure and predcribed Cortifoam. Am a bit relunctant to take it since I am in my first trimester. What did your doc precribe? What cream? Medical pads? Also - silly question...but a is a sitzs bath the insert you place on the toilet seat (filled with warm water or something else added?). I somehow managed 5 years with a pouch not knowing really what is it or where to get one! [ more ]
NaomiLI Thank you Clicky and Colleen for both of your responses. I really appreciate the feedback! I went to see my GI doc about the issue I was having and it turns out that I have 2 anal fissures. Doc prescribed cream and also recommended that I use medicated pads after bowel movements. I've been feeling a lot better since [ more ]
Colleen2001 Hi Naomi, Congrats on your pregnancy! It is a very exciting time and I hope the pain doesn't diminish this for you. As for the pain, I experienced pain in both my pregnancies. With my first, my GI thought I may have pouchitis and I was treated for it. It was very close to the end, so I'm not sure it that was really the cause, but being treated for something put my mind at ease. My second baby caused a ton of pain, mostly what I felt was just general pouch pain, but again, not until I was a... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pregnancy and incontinence
armywifearmywife
jpouch2008 JillM, Great advice!! LOL! Just saw my GI and he prescribed Cortifoam for my fissures and spasms. Do any of you know about it's safety in pregnancy or had any experience with these types of meds? [ more ]
JillM My high risk OB was fine with me taking immodium, but like you I chose not to take it. Congrats on the baby girl! My son is 7 and my daughter 4 1/2 and they are such a blessing. Enjoy this last month as much as you can. Go see every movie and eat out - it'll be the lastmovieand HOT meal out you'll have for a while! [ more ]
clz81 My understanding with the loperamide was as Sarah said...there is not sufficient data to deem it safe or unsafe. While it was a category "B" according to my OB, my GI said in his book, it came up as a category "C" for pregnancy. The more I looked into it, depending on who was writing the guideline, it was both B and C. I chose not to take it due to the lack of information out there, but my OB didn't seem at all worried. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Anyone had a pouch to uterus fistula?
LizzLizz
Jan Dollar I'm sure it all depends on what angle the view is on the MRI. Dr. Shen noted there was a subtle change, but probably could not actually see what that was. I suspect that if you had repeat imaging, it would not be so subtle. There have been people here who have had abscesses defy all sorts of imaging and it was not until exploratory surgery that they were able to really see what was going on. Even with the EUA, they only "see" what is visible within their view, not what is going on inside. I... [ more ]
Lizz Lol! Me either, Jan I would have to be the one to break with tradition, right? I went to my PCP today to get a pelvic exam (she said my cervix was irritated and red) and we reviewed the CT. There was a big pocket of air at the top of my uterus where it touches my J-pouch, so we supposed that was the fistula. I'm confused b/c when Dr. Shen saw the MRI he said, "Very subtle change in pouch vaginal fistula." I would think there's a significant difference in the uterus and vagina. I'm so confused. [ more ]
Jan Dollar Oh my gosh Liz! I would be surprised if anyone here has that. I've been around for over a decade and never recall someone with this. I was not even able to find any info on the net about it. The only uterine fistulas I read about were from the bladder to the uterus. This would have to be Crohn's related I would think, but I honestly don't know. What are they doing other than antibiotics? Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF Transfer today, Quick Question
MD Meg Drum
Meg Drum Hi Jill- Thanks for the advice. My doctor/RN told me also not to take a home pregnancy test also! Did you deal with any hydration issues while pregnant. That is my biggest fear. Because I always feel dehydrated no matter how much I drink, do you ladies have any tricks. I drink coconut water. Thanks for the reply its amazing how this site help you to relax. [ more ]
JillM My clinic told me there was nothing I could do to make the embryo more likely - or less likely - to stick. They don't even promote the idea of lying flat w knees raised after the transfer. I got pregnant three times (miscarried the second) so they must know what they are doing! Try not to worry too much, and keep really busy during the 2ww. The best thing is to go out a lot - dinner, movies, etc...And try to avoid HPTs - my second cycle I took one, it was positive, but when I went for my... [ more ]
Meg Drum Thanks so much!!! I thought I was the only one that thought of this issue Everytime I go I try not to push too hard. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
need to hear about others fistula experiences
N NJK
hart155 I had a few pop up right after my initial surgeries. They could not be repaired directly because the tissue wasn't healthy enough and an advancement flap procedure as well as mesh also failed. They were always better during anti-biotics because the output was too thick to get through...not gone though. I eventually had a gracilis muscle graft to repair them. Fine to deal with when they are small but mine "burst" and there was essentially little separating my vagina and rectum. It can be very... [ more ]
tammykathleen Hi NJK, I have four fistulas with setons. What type of questions do you have? I would PM you but I actually don't know how to do that (despite being active on this site for years), but I can respond if you PM me. It can be a daunting process and isn't fun. But please ask me anything you want, no matter how graphic, because I wish I had known more about them before it happened to me. ~Tammy [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Starting IVF
J jpouch2008
jpouch2008 Thanks so much - sure nice to have support from those who can relate! I am trying to drink tons of water but can't figure out what/if any foods are suddenly creating such bad rectal pain so am starting low residue now...plain rice' , crackers, yogurt, etc Think I need some rectal meds, have read on forums about Canasa etc but seems you need a prescription. Will try to get apt but that usually takes weeks. Thanks for tips. [ more ]
clz81 congrats!! i would suggest you stop any bowel slowers (which you already did) and keep up your fluids! you never know when morning sickness will hit (if it hits), and it can be really hard to get liquids down. you would still be on the early end likely so while you are not having nausea...get in all the food and liquids you can! [ more ]
rockandroller For many with IBD, IBS, pouches and other related ailments, pregnancy is 9 months of misery. My sister had horrible diarrhea and cramping and pain the whole time. For me, it actually ended up firming things up and I felt really good most of the time (as good as you can feel that is). Just remember whatever you are experiencing is temporary, and I hope the scan results mean a healthy baby is on the way for you. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Antibotics and pregancy
DB Darcy B
Goodspeede I had Bactrim during my 2nd trimester. It was not for pouchitis - it was for a kidney infection. But it was safe and it worked! Good luck to you. [ more ]
jpouch2008 DarcyB, I am in the same boat. Waiting for Dr apt to see what I can take. Did you end up taking something? Is it better? [ more ]
clz81 Augmentin or amoxicillin is your best bet unless you allergic. In that case, there are some alternatives. Flagyl is ok in 2nd and 3rd trimesters. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
14cm Complex Ovarian Cyst
S Sonja6
kta Oh, gosh! I hope mine goes as well. He wants to leave the uterus since I have so much scar tissue, but take both ovaries and the one tube I have left. I am 55 so have no issue with losing those parts. I just want to protect the pouch. I could live with the bag, but really hated it when I had it. I have sensitive skin and by month two, I got so raw under the wafer that it came off. I was sitting watching TV and suddenly felt warmth running down my side. It was 8 at night. I didn't trust any... [ more ]
CeeeeCeeee I had some simple cysts on one ovary and my ObGyn kept following them with ultrasounds every 6 months. She finally told me I should have a complete hysterectomy since I was over 70 and beyond childbearing age. Interestingly, I had absolutely no symptoms! So.....a year ago I had the hysterectomy. I had an oncology OBGYN surgeon do the surgery upon recommendation of my regular ObGyn. He really wanted to do it all laparascopically but when he tried to do so, he couldn't because of the number of... [ more ]
kta To add to my info. and the whole uncertainty thing - at one time they thought it was a hydrosalpynx (sp?). My j-pouch doc mentioned it could be fluid filled areas that j-pouchers get. So no one really knows what it is, but, again, the oncology surgeon is pretty sure it's a tumor. I want a second opinion, but the doc I want it from is in the same practice so that is awkward and I want a totally unbiased opinion. Guess it is time for more research. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
24weeks and rectal pain -Hemroids or pouch issues?
K Ksande
Ksande Yes, meant hemorrhoids, thanks. Was bedtime when i wrote original post. The pain was almost unbearable...needing to go lie down and was persisting for up to 1/2 hour afterwards so I figured it wasn't just run of the mill hemorrhoids. But I started taking Zantac yesterday for acid reflux, and I don't know if it's related, but the burning, itching and discomfort have subsided for now. I hope this continues! [ more ]
skn69 Sitz baths with epsom salts? And wash with a squirt bottle...Easier on the bottom side and less irritating. Shaorn ps...Congratulations [ more ]
rockandroller hemorrhoids. common in pregnancy. not much you can do. Hang in there. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Another Ovarian Cyst!
KelseyHey2308KelseyHey2308
skn69 Kelsey, I am wondering if the cyst is not throwing your hormones out of wack anyway, inspite of the pill (especially if it is a timed mini hormone that can sometimes not be strong enough or run right through us)and that is exacerbating the cuffitis...they are often related...our hormones effect our digestive system something awful (diareaha during pms and periods, double cramping etc)...When they had me on progesterone for my cysts they gave me this tube of hormone gel to 'add' to the mix if... [ more ]
KelseyHey2308 Well Sharon I wish I had seen that post sooner! I have effectively wasted two days (because who goes to school when they're flaring--someone much stronger than I, that's who) going to that ER yesterday AFTERNOON. I just got home. Definitely reminded me why the ER is not always in and out pain relief. Between the cysts and the UC flare I'm in a lot of pain (I know technically it's 'CUFFITIS' but I can't bare explaining to people that after four surgeries I still have 2cm of ulcers in my... [ more ]
skn69 I usually find (especially during flu season) that ER is not the best place to go unless we are dying...they just don't get it and you end up spending 5 hrs waiting and wish you hadn't...can your do not give you a hormone patch? or a gel? Here they have these tubes of hormone gel, you put a drop on your forearm and rub it in every morning...no absorbtion problems... Sharon [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Thinking about the future.
J ju330
clz81 I had a very positive experience with a vaginal birth with my j-pouch. I did have one thing going for me though, which was that I had a baby pre-pouch so I had an idea of what to expect. My docs worked with me to plan for the most favorable outcome based on my history, my body, and the size of the baby a couple week prior to his due date. I'd be happy to answer more questions if you want to PM me, but know that everyone is different and each situation is unique. [ more ]
ju330 Thank you for the honest response. My surgeon told me that many of his patients went on to have children. I didn't think at the time to ask details about it... I guess I was just too focused on the matter at hand. I suppose I will have to ask him more about it at my yearly appointment. [ more ]
Kia I'm not sure I can give you happy information as my experience wasn't good. I gave vaginal birth. The OB wouldn't consider a C Section bc of my prior issues with adhesions. I tore badly after the episiotomy and had severe rectal pain for many months. I also staring having incontinence issues that still plague me. I may not be the norm. I don't know. I do know that doctors told me I should have no problem with being PG and vaginal birth. Unfortunately, it didn't work that way for me. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Retrieval Day
MsSterlMsSterl
jpouch2008 Thanks for replying. No I didnt hyper stimulate - they told me during collection that all looked great. I only had 7 follicles. 4 fertilized and today I go for my transfer of 1 or the 2 embyos that are viable. I see you had your pouch removed. Wow that is my biggest fear - especially with a possible strain like pregnancy. It is very comforting to hear your positive outlook on having it removed. [ more ]
JillM Any chance you have Hyper Stim? I had some pain and symptoms post retrieval on my second fresh cycle and had hyper stim. You should talk to the drs asap - you may be able to postpone transfer a day or two (depending on how many days you are now). I was in a 5 day transfer cycle and we postponed one more day - transfer was successful and my daughter is now 4 1/2. [ more ]
jpouch2008 Did you fing the retrieval difficult? My first IVF cycle (pre-pouch) was so easy. But I am in a lot of pain post retrieval and the nurses don't have any experience with Jpouchers. I am now scared to go ahead with tomorrow's transfer! Any opinions/advice would be appreciated! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
hydrosalpinx and surgery to disconnect the tube -need some advise /help ?
M meghspd
meghspd RE that I saw did a blood work and I have a low amh <0.20 So he says that I should get pregnant sooner than later coz with Age egg quality will reduce . Also he said that if I am thinking Of taking an ivf route then due to low amh its better to start early As I may not respond well to the stimulation He also suggested freezing eggs as soon as possible then treating hyrdo n then going thru the rest of the process I am having a second opinion on 19th from another Re Coz the one I met is a... [ more ]
commandz If you're having leaking at night, then your discharge should be the same. If it's not the same then I don't think it's the hyrdo's. I don't have side effects from the hormones. Only thing I noticed from the hormones is that how I ususally am during a menstral cycle is was taken up a notch. And yes, the hyro's liquid is toxic. No my doctor didnt mention the increased collection of fluid. We paid out of pocket for the IVF so I understand the concern. But once you get pregnant it's not going... [ more ]
meghspd Thanx a lot ..and I have had similar leaks too mostly at night. But I also have a constant discharge . I donno What that is. I had asked my gynac he said one can have increased discharge with a hydro ..but that is not like water .So not sure why and is that toxic too . Anyways , what you are saying is right that its a chance that one has to take. I also dont want another surgery.I wish this was little bit easy after what we have gone thru . Did you have any side effects from the hormones... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
anyone with IUD
S shawanna24
liz11 yes mirena delivers hormones. My docs pretty much made me get one about 6months ago to control bleeding as I have adenomyosis. For me, Mirena has been awful. Massive pain almost every single day. And the first few months were absolutely debilitating. I am getting it taken out this week.. hopefully.. if it can be done in the office. I'd rather get blood transfusions and iron infusions over the constant mirena pain. [ more ]
JillM Just be sure you research which IUD you use. Some of them deliver hormones, so if that is your issue, be sure you are choosing one that is hormone free. [ more ]
shebefergy Hi, I've had my J-pouch for almost fifteen years and for more than four years, have had a Mirena IUD. If you're one of those lucky ones who can use an egg timer to time your cycle, then that's the only "problem" I can think of. I've never been regular so it's I have kind of been able to figure out what's my cycle more or less. Haven't had a period or any spotting in the last four years--though in the last year or so I do get occasional cramping but it doesn't last for more than a day. The... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
MsSterl - thinking of you
J JillM
rockandroller I'm so sorry honey. I "felt" pregnant every one of the four times we did IUI. It's the hormones. I agree with you it's terrible the financial and other hoops needed to go through to adopt. We had to look at what money we had avaialble and decide to EITHER spend it on adoption or on a single try of IVF and we went with the IVF. Any chance you can try it again? Were you able to freeze any for FET? We were not because they didn't get enough eggs for any to be leftover, but many women do. Big hug. [ more ]
clz81 so sorry to hear your news :-( i was excited along with you reading your posts the last few weeks. i hope you can find peace with what has happened and as jill said find a path to parenthood soon. [ more ]
JillM I'm so sorry. I can't imagine your disappointment. Please be kind to yourself right now. As for adopting, there are many ways to adopt that aren't so expensive. We were well on the path to adopting - even had a home study done - so we learned a lot. Adopting out of your local social services agency is often free or nominal in cost. Wile newborns aren't always available, you never know, and you may find an older child you would fall in love with. Here in MA if you adopt out of children's... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF, Twins and J-pouch
H HeatherHolland
rockandroller Agree with everything JillM said. We put back all three of our embryos as we knew we wouldn't have another shot at IVF or even freezing and using later due to cost, with the knowledge that we could have twins, triplets, or something more (and being ok with advise to reduce if needed). We evaluated and made the decision best for our family, just like we did when considering the likelihood of Down's (pretty high with first pregnancy at 39) and M/C and of course worst case with pouch (lifetime... [ more ]
JillM Actually, "easily end up with twins" isn't necessarily so. The great thing about IVF vs IUI is that you have some control over the number of fertilized eggs you introduce. When you decide how many embryos to transfer, consider all your options, and all possibilities. When we did our first IVF we transferred two embryos figuring if we ended up with twins that was ok. We were warned against higher order multiples, so we didn't transfer more than 2 because then the only way we would get more... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Lets get this started!
Allie86Allie86
kdub Hello Allie, ladies! Similar story for me, I am 31, J-pouch at 21. I think it's excellent that you are pursuing pre-conception appointments with your doctors. I also have epilepsy, so the anti-epileptic drugs meant that pre-conception planning was essential, but I think it really helped ease my mind relating to the J-pouch related issues as well. I've been trying for a year and a half and started seeing a fertility specialist about 6 months ago. We did the whole work up, and luckily, my HSG... [ more ]
shebefergy Ah, I should clarify. I had a illeoanal anastomosis, so in my mind, I think of my j-pouch as a pouch. [ more ]
JillM Actually I had my pouch removed before getting pregnant. So I had a perm ileo for both pregnancies. I did have a near total obstruction with the first pregnancy, but it was resolved without surgery and my son was full term and healthy. Second pregnancy no problems, also full term and healthy girl. First pregnancy no morning sickness, a little queasiness here and there first trimester. Second pregnancy none of that but nothing tasted good - I didn't want to eat at all the whole pregnancy. I... [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregancy and increase in BMs
DB Darcy B
Darcy B Thanks, I did end up spending a few days in the hospital for dehydration, but the dr.s finally decided what was "safe" to give me. I guess Flagyl is safe but only rectally. It seems to have worked. And now thing have defiently slowed down. I think i am finally expierencing the "slow down" of the bowels that u usually get in pregancy. Thanks for your help. [ more ]
clz81 Darcy, I replied to your other post regarding antibiotics. Augmentin or amoxicillin are the safest ones to take that will also treat the pouchitis. Flagyl is ok to take in your second and third trimesters. I was on a low dose of Augmentin my entire pregnancy for chronic pouchitis. [ more ]
Darcy B Thanks.....that is what i am starting to think as well. It is slowly getting worse as well as an increase in urgency. So frustrating, trying to drink enough liquids in a day to keep hydrated with it is contiunally coming out of both ends! It has been so bad that i have taken lomitil a few times (I dont think its recommended in pregancy). Is there any antiboitics that are considered safe to treat pouchitis in pregancy? I have an appiontment with my phyisican tomorrow. Hopefully get this... [ more ]
See all 4 replies...

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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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