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J-Pouch ForumsWomen's Health & Pregnancy
To those who had c sections....
K ksmarisa
ksr My colorectal surgeon told me he had to be at my c-section. He put all my insides back together after the OB finished her job. I think you should just check with your colorectal surgeon and have good communication with your OB. [ more ]
Daisy18 My OB did not have experience with women with pouches although she did have experience with other diversions. I don't think it's important but I do think it's beneficial to have an OB who at least is familiar with what a j-pouch is. [ more ]
LHetti I don't think it's necessary to find an OB who has done a c-section on a j-poucher. The j-pouch is tucked down inside your pelvis and the uterus and baby are all on top anyway. I had a lot of adhesions from all my previous abdominal surgeries (I've had 2 c-sections also), so the OB had to do some extra work to get out my second! My colo-rectal surgeon was not there and wasn't necessary (he said). Best wishes! A baby is such a blessing! Laura [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
totally perplexed!!!??
S Sonja6
Sonja6 Thanks, Jan. I did go to my primary. I requested a blood test and they said urine would be fine. I wasnt to thrilled with that response. But there supposed to be the doctors, right? They second urine test came back negative and they sent me to get a x-ray. They gold me I'm probably just constipated!!! I couldnt believe what I was hearing. I know some people with jpouches get constipated. But this is a problem I have never had! Even when heavily addicted to opiates! Which is why I loved them... [ more ]
Jan Dollar Get the blood test or do another urine test. Maybe you just did the first one too soon. Why waste time when you could KNOW for sure? I had pregnancy symptoms before positive testing. Early spotting is fairly normal. Occurs with inplantation. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
2nd degree vaginal tear help
S sally85
skn69 Sally, Only two suggestions here...can they test the nerves to see exactly how damaged they are? There are very specific tests and they should be able to map the sphincter. Next, as always, if you cannot have a jpouch and do not wish to keep the ileo then there is the possiblity in England (at St Marks as a matter of fact plus a couple other places) to have a k pouch done. It is not an easy surgery, you need a really experienced surgeon to do it and you must have a good dialogue with him. [ more ]
sally85 Thanks Jan i appreciate all the advice [ more ]
Jan Dollar Well, they say there is sphincter damage with every pregnancy brought to term, regardless of the type of delivery (obviously, vaginal delivery is more damaging, but the pregnancy itself puts strain on those structures). In a general sense, any nerve trauma can take up to a year for the body to repair itself. After that, it is considered irreversible. I have no idea what your specific damage state was before your last pregnancy or after it. I was speaking in general terms, not specifically to... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
weak pelvic floor and weak anal sphincter
S sally85
sally85 I see what you mean, I guess u have to tube I to your body and really listen to how it's feeling, I'm glad there's some hope for me after all then, Im sure my pelvic floor is shot well I've been told it is! So I'm working to fix it, are you based in England? There's a clinic I've found I'm going to see them in may they deal with just pelvic floor dysfunction, maybe you could try them thy might have ideas or exercises to help with any problems? [ more ]
ksr I could not walk without having stool leakage. I could not lift anything either. I had to wear panty liners 24/7 until I got my pelvic floor straighten out. I still have problems on occasion. I have learned how to manage it. If my insides are not feeling "normal", then I will not lift things. I am careful. [ more ]
sally85 Thanx so much for replying! That gives me hope which means so much right now Do you mind me asking what was involved in the therapy you had done? And also how bad did they say the problem was initially? With me the surgeon had a check and said there is a defect in the sphincter from 10-2 like on a clock and he's referred me for biofeedback but he just seemed so so against having the j pouch done [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
29 Weeks and having recurring once a week pain
A AParson
clz81 I think it sounds like a partial obstruction. They are more common when you are pregnant. When you feel it coming on, just be sure to keep pushing liquids. My general rule is that if I start to feel full or nauseous then to stop eating and do liquids only. If I'm feeling a pain but still feeling hungry and not bloated, I will continue eating but pushing a lot more liquids. Since my obstructions in December, this has been working for me. Just follow what your body is telling you. Small,... [ more ]
AParson Also, I would love suggestions on diet and what to eat and what not to eat. I know it's pretty individual but I'm struggling and I don't think I can do this weekly for the next nine weeks. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
scar tissue around the vaginal area
ksrksr
kk Interesting.I have looks like gathered skin never noticed in that area. So far not causing any problems that I know but have wandered if it keeps getting closer/closer to vagina area what problems it will cause. I did have some issues of somewhat pain during sex.Not sure if it had to do w/bowels were attached to female area. I had pelvic floor rehab. for not being able to empty. Common for all women as get older. Surgery was in 2009 and so far no issue except seeing that shrivled looking... [ more ]
ksr I found out that the pain is from the muscles. [ more ]
ksr I am going to see a pelvic floor physical therapist today. I hope this will help. I am pretty sure the scar tissue must be stretched out. I had to go years ago because I was having problems with stool leakage. At that time the PT told me I had a lot of scar tissue in the vaginal area too. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy with a j pouch and weak anal sphincter muscles
S sally85
sally85 Thanks JJA, i guess im just trying to hold on to any normality thats left when you end up with an ileostomy or a j pouch, but sense would tell me probably to quit while im ahead and not get pregnant if i ever did end up with a j pouch, especially seeing as my anal sphincter muscles are so incredibly weak, the surgeon said they are the worst hes ever felt [ more ]
JJA I responded on another of your threads. IF you get the j pouch, and get pregnant again, you might consider a C-section to prevent further risk of further damage to already damaaged sphincters. If you get the j pouch and still have a weak sphincter you might also consider pregnancy from a functional perspetive. I had a pouch with a repaired and still weak sphincter and fecal incontinence. I took lots of immodium and codeine to help thicken to help cope with this-could I have taken those... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
tanning
K kk
JJA I got a deal at a local place for a Versa spray tan. It smells that evening until you can shower, but no spells after that. Pretty. Not cheap when not purchased on a "deal" though and still must wear sun block if on keep out of the sun meds as it offers no protection. Lasts at least a week-maybe more. [ more ]
Jubilee1962 Look up the "tarte" self tanner. Read the reviews on QVC and tartecosmetics.com. It's only been out for less than 2 years and it is a hit!! You can also watch utube reviews of it. I bought it last summer..I think it is the best..I now only use Tarte cosmetics..great for your skin!! [ more ]
jodiloveslife I use Arbonne self tanner and love it! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Trying to conceive with JPouch and history of UC - 12months+
T TashB90
ksr My husband and I had problems with conceiving. I have a j-pouch and FAP. We went to a fertility doctor and did everything but IVF. He told me I killed my husbands sperm and that I could never get pregnant on our own. I also was not ovulating. He also told me since clomid did not work I could only get pregnant with fertility drugs. Nothing worked. After we spent $$$ we found out he lied to us. I kept doing research. Went to other doctors. I read about metformin, a diabetic drug, and one... [ more ]
Joza Hi, I have had j-pouch for a year and did one round IVF-ICSI, because my partner has problems and I'm now happily 8 weeks pregnant. Our first child is also a IVF-baby. I can really recommend IVF. I was really scared I could never get pregnant after all those surgeries, but it was a wonderful suprise to get lucky on the first IVF-round! It is really worth all the trouble. Good luck and if you want more info, feel free to contact me. [ more ]
clz81 If you have a chance to read through the posts over the years, you'll read that having trouble conceiving naturally is unfortunately rather common after these surgeries. We were one of the lucky couples that got pregnant right away with no issues. The discomfort you are describing is also pretty common across the boards. Not exactly sure what got moved where during these surgeries, but sounds like it's uncomfortable for many women. On a positive note, it got better for me after my son was... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
13 weeks and pouch not behaving
I irenepuss
lholdem Irene, I feel for you! The combination of loose + lethargic bowels is quite the treat, eh? I've also had continuous nausea, loose stools and gas. The gas is definitely my least favorite, since we all know us j-pouchers have trouble passing it without stool, and even less so when a baby is putting pressure on your bowels. It just builds up and gets sooo painful. I've also had stool leakage here and there... I'm at 31 weeks now - I can definitely say I'm not as continuously miserable as first... [ more ]
ksr Before I got pregnant: If I lifted heavy items, I could have stool leakage. If my body was not "feeling right" I could also have stool leakage. After I got pregnant, I had stool leakage all the time. I sometimes would wake up in the middle of the night with stool leakage on the sheets. It was a mess. I got through it though. After I had my baby, I had major complications. My gi system shut down. I ended up with an NG tube. It was a bad situation. I did have a scheduled c-section. It took a... [ more ]
REM ksr, Did your leakage stop after your pregnancy? Did you ever have leakage before your pregnancy at all? Or just during the pregnancy? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
When did you feel the first kicks?
S SKadett
ksr I only felt my daughter move one time during my pregnancy. She kicked in the middle of the night and her foot came in and out. I did not get to see it. It felt great! I was worried my entire pregnancy because I could not feel her move. I think I had so much damage to my nerves that that prevented me from feeling her. [ more ]
jodiloveslife Mine were about the same as yours--popcorn like. Now I am 21 weeks and I can totally feel her all the time--so neat!!! Congrats too!!! [ more ]
SKadett I will do that!! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Vaginal Fistula?
SB S Brick
n/a Hi Stacy, I can't offer insight, but can offer sympathies - I have a PV fistula (complex) and a seton and do worry about having the current fistula branch off. Can I ask who you see in Columbus? I've not had much luck in the area, so have moved my doctors up to Cleveland. Best of luck. [ more ]
hart155 I had many rectal/vaginal fistulas keep cropping up. The repairs with mesh failed and eventually the only repair that worked was a gracilis muscle graft from my leg and having my pouch removed. I hope you find a repair that works before you need something as extreme as me but sometimes the fistulas are your body's way of attacking now that your colon is gone and they won't quit until your rectum is gone too! [ more ]
GinLyn No, sorry, I've never had a seton or external problems with my fistula; just infections and internal pain. You might want to post this in the general discussion to get more hits. Gin [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
37 Weeks Pregnant and rectal bleeding.
MH Mrs. H.
Mrs. H. I do still have my cuff and after a blood test, the doctor said my CRP (inflammation) levels were higher than normal. I have a scope booked for Friday so I'll find out then if it's just hemorrhoids or cuffitis - though I'm having a fair amount of blood with small clots - not something I'd expect from hemorrhoids. [ more ]
Jan Dollar If you have a retained rectal cuff, it could be cuffitis too. Both of my pregnancies were before my j-pouch, but with each one I had mild-moderate flares of colitis that were presumed to be triggered by the pregnancy. Jan [ more ]
GinLyn That could be -- I had both of my pregnancies pre-pouch -- BUT it could also be something simple like internal hemorrhoids. I had these with one pregnancy and bled rectally. Not too much each time, but definitely there. My appetite also massively slowed down toward the 37-week mark; everyone is different. VERY good idea to get it checked out; you need to be safe and careful, obviously, but it could be something quite simple. Best, Gin [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
draining seton
J jennym2
n/a I was told by every dr. I've seen, that having sex with a seton will not damage my RV fistula - could involve pain, but will not damage anything. I would suspect that the blood is coming from the "wound" that the seton emerges from - caused by pulling, tugging, etc. I would watch it for a day or 2 and see if it continues. If it does continue or get heavier, you should let your dr. know. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pains during period
N Nikoline
GinLyn Is the pain from menstrual cramps or something different? Don't think it's nothing; I dealt with this for YEARS until my doctor here sent me to a specialist to have it taken care of. They "burnt" the lining of my uterus with radio waves and no more pain also no more HEAVY periods. Have you seen a gyno or only a family doc? Gin [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
38 weeks pregnant!
C C86rf
kdub I just had twins via c-section on feb 6th. I had a few issues with milk supply in the beginning but my OB attributed it to the c-section, not necessarily to dehydration or the j-pouch, etc. This article from kellymom.com states that: “It is widely assumed that milk production requires a high fluid intake on the part of the mother, yet the evidence suggests that lactating women can tolerate a considerable amount of water restriction and that supplemental fluids have little effect on milk... [ more ]
clz81 oh, and i think the supplements are actually called "more milk plus" by motherlove. [ more ]
C86rf Clz81- Thanks my body does one extreme to the other if Im not careful with how much I'm drinking. Either I get constipated because of not drinking enough or have diarrhea which makes me dehydrated because of drinking too much. I think youre right, too much dilutes my system. There's a very fine line for me. I only take metamucil and haven't had to take any medication since my take down which i'm so grateful for. I could try lamotil or something but so far im happy with the way things are... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pregnancy with k pouch
Rosie128Rosie128
Rosie128 Thank you Jodi! I am happy for you too! I bet you can't wait to meet your little one! I love being pregnant too, although once the morning sickness passes. While I have it, I am queasy 24/7. But once that part is over I love the feeling of carrying life! Good Luck and hope all goes smoothly with the rest of your pregnancy! [ more ]
jodiloveslife I have a j-pouch so I don't have any answers for you but did want to say CONGRATS!!! I hope that everything goes awesome for you. We are expecting a girl in June. This is my first. I have felt fabulous this whole pregnancy too--feel better being pregnant! Hope you feel the same way!! Best of luck!!! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy thoughts
L Lexi
JJA I suspect docs will tell you there is no reason why you can't carry a healthy fetus to term-that's wht my GI & high risk OBGYN told me as someone with an 11-year j pouch surgery with subsequent complications person, anyway (of course you will want to have these convos with your own docs about your own specifics). Of course, no one could "guarantee" I woudln't have complications, (reduced continence, pouchitis, be uncomfortable, develop hemmeroids, etc.) My husband I were both very... [ more ]
jodiloveslife Hello--I would consult with your GI doctor and see what they have to say regarding your situation. I totally understand where you are coming from though being worried. I was worried too at first. I consulted my GI doctor and then we talked to a fertility specialist. I am 38 and did have a blocked tube. We decided to go for it with the okay from all doctors. Our first IVF try and we are expecting a girl in June. I have felt so fabulous this whole pregnancy. I feel better being pregnant!! I... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
anul sex
F faithful
Rosie128 I had incontinence with a j pouch, it was from damage to the spincter muscles that occurred during surgery. If a careful surgeon's hands could cause damage, I would hate to think of the damage that would be caused to the muscles through intercourse. I would absolutely not risk it. I have never felt as undesirable and unlovable as I did while I was fecally incontinent. Nothing, I mean Nothing is worth that risk! [ more ]
dawn58 My doctor told me NO WAY. [ more ]
skn69 There are different opinions on the subject and a lot of them depend on how much cuff was used when your pouch was created. The longer the cuff the more distance that you have before your pouch is reached. I have never been a fan of anal sex (and to be perfectly honest, things have been close up down there for the last 34yrs so it is a no brainer for me) but can understand that it is an integral part of other people's sex lives. My opinion is based on the fact that we have suffered so... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pouchitis and vaginal pain
betsaroniebetsaronie
CJB Yes, I too will absolutely feel pain/discomfort in my vagina whenever my pouch is inflammed or otherwise mis-behaving. Likewise, my pouch never seems happy when I am ovulating or have period cramps. The pouch and vagina (at least in my case) are so close together that I feel as if they are now one organ. It is often hard to know where the pain is coming from. Hot baths always help. CJ [ more ]
Pluot This makes sense to me. The pouch is right 'behind' the vagina in your pelvis, so if the pouch is inflamed it could be irritated by jostling from intercourse. I personally haven't experienced this (or pouchitis) but when I still had my rectum I had pain from intercourse when the rectum was inflamed. Same place, different organ [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Trying to conceive, don't know how to get help.
L Lee33
Jan Dollar I think if you go with the pelvic surgery angle, he can "get" that. Rectal dissection is in the area of the reproductive organs. Jan [ more ]
Lee33 Okay. I will try to proceed then with something. Called my gi doc to see what they thought, or if they can help me explain it to my gyn what a jpouch is. I feel strange trying to educate my doctor with studies and explanations but sometimes it is necessary. Or might be hunting a new doctor. [ more ]
Jan Dollar I believe that once you are at higher risk for infertility (pelvic surgery puts you there), the one year wait guide line is shortened to six months or so. This is especially true if you are around 30 years or more. It just wastes time that you could be undergoing testing. I'd see a fertility expert if it were me. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Getting Pregnant
PippiThePiratePippiThePirate
Clicky I was married 11 years and we adopted 2 kids! Never tried treatment - without trying we miraculously got pregnant and I am feeding him as I write this ! He's fabulous! Don't give up! I believe a committed yoga practice is what changed things for me but of course could not prove that! [ more ]
Lemon My husband and I tried for 4 1/2 years to get pregnant. I too had a hydro on my right tube and my IVF doc said that if I didn't take care of the hydro, my chances of IVF success were slim. He told me about the ESSURE procedure, which is a procedure used to block tubes for women who aren't good candidates for surgery. I had this done in order to block the fluid that was in my tube from draining into my uterus and killing any embryo that would be transferred during IVF. Long story short, I did... [ more ]
skn69 My experience goes back 30 yrs but after my k pouch surgeries I had a hard time getting pregnant ( I got married between surgery 2 & 3 and was pregnant for surgery 3...lost it post-op)...The HSG showed 1 tube blocked and my uterus folded over in 2...they thought that it was a congentital deformation)...funny thing was that a year after the HSG I got pregnant naturally. Same thing happened in my 30's after the 2nd HSG...got pregnant twice within the 3 years after it...my uterus couldn't... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Living with fistula
D dawn58
Clicky I think every fistula is different. I had to revert to an ileostomy due to fistula, cuff iris and pouch iris. The fistula pushed me over the edge but in combination with the other stuff. Living life much happier now! Good luck! [ more ]
GinLyn Been dealing with an R/V fistula for 3.5 years now. CJB is completely right, bulking up does help and sex is fine (although bathing afterward has been recommended to me). Some fistulas are more active and larger than others, and every fistula can act up more at different times. A lot of how you deal with it comes down to your attitude and how it is affecting your daily life. If I can answer any other questions, let me know. Gin [ more ]
dawn58 Hi CJ, I sent you a private message. I would like to email with you. Thanks. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
gaining weight?
C clouwho2
SKadett After one of my surgeries I lived on ice cream bars and fudgesicles. I gained 10 pounds in 2 weeks! [ more ]
clouwho2 Thanks ladies, I have been doing all of the foods you suggested, clz81. Thank you for the reminders of them. I sometimes get frustrated that the 'healthy' things are making me miserable. I'm still not gaining a ton, but I'm not overly concerned. elliepouch - I agree, there are a lot of foods that are healthy and good for me that may not be on the pregnancy must-haves. Thanks! [ more ]
elliepouch If I were in your place I would just focus on finding the combination of what what I wanted to eat and the foods that didn't cause me pouch problems. It might not be by the "healthy pregnancy book," but these would at least give you and your baby some basic nourishment. Women through out history and in the world have eaten all kinds of things during pregnancy and produced very healthy babies. You are strong and have survived a lot. (There is no way you would be on this board if that was not... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Want baby, but 39 and scared bc history
A AN
JJA After doing well with my pouch for several years, I developed complications with fistula, damaged sphincters from the surgery for that which led to fecal incontinence, pain and other issues. While GI & OB said their was no reason I couldn't carry a fetus to term and should expect the baby to be healthy, and they agreed a C-section would be in my best interest, Neither could really say how a pregnancy would affect my body. In fact, GI said, "Well if you want kids so badly, why don't you... [ more ]
jodiloveslife I would talk with your OBGYN and go from there. I had and HSG test showing a blocked tube(had 2 ectopic pregnancies) I am 38 and my doctor suggested we skip all the trying with IUI's, chlomid, etc. and go straight to InVitro. I am now 17 weeks pregnant!!! I actually feel incredible. I feel better being pregnant. My stomach is never upset, no pouchitis, and the bowels slowing down is awesome Best of luck to you!! [ more ]
clz81 AN...a pregnancy with a J-pouch really is not all that different than with a colon. Many women have difficultites getting pregnant due to scar tissue or blocked tubes, but your body should handle a pregnancy just fine. At 39, you may have a bit more trouble conceiving, but you could also fall pregnant right away! I would suggest you meet with your OBGYN and have things checked out sooner rather than later so you know if you have any obstacles to hurdle. I wish you the best of luck! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Surrogacy?
M mummytobe
mummytobe Thanks so much for your advice. It is so hard when the surgeon knows it is very risky - however he is hesitant to write anything down due to the legal risks this may encounter....it is so sad that the legals is what scares them. Thanks so much for replying. My GP and other doctors have said surrogacy all the way as it is an available option for me. It is just the clinic who are a bit on the fence about how critical it is. Here in Australia you can only do surrogacy if it is life threatening... [ more ]
clz81 I think you really just need to weigh the risks and consider what you are willing to put your body through. If you are still prone to all these issues, they are not likely to go away during pregnancy. Obstructions and such are hard enough to deal with when you aren't pregnant. If you've been free of these issues for a year or so, then it looks a lot more optimistic for you. No surgeon wants to put a pregnant women under anesthesia for a hernia repair. I don't have any experience with hernias... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Questions!
E elliepouch
elliepouch Thank you so much! This is really useful to hear. [ more ]
clz81 I can't answer all your questions, but here is my experience: 1. I was able to sleep on my stomach til around 20 weeks as I'm a stomach sleeper. After that, I did all side sleeping, but positioned myself with pillows so I was still kind of on my stomach. 2. At the end I was going all the time, but I had/have chronic pouchitis and my meds weren't working so well in the end after being on them so long. Unisom at night really helps though in the 3rd trimester so you aren't waking up with every... [ more ]
irenepuss hi ellie I have had one baby 2 years ago. Scars were fine. you wouldn't be able to lie on your stomach as it's too uncomfortable. i used to sleep on mine but don't any more. I had no problems with my pouch first time round and don't remember increasing my frequency. however this time my guts are not so good and it's increased twice fold to about 10 times. I had no leakages either. Keep doing pelvic floor exercises. I also had IVF both times. I am also having a section again. good luck-it's... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
"menstrual type cramps"
Wanna Be HealthyWanna Be Healthy
Jan Dollar Ha! We do tend to be complacent about dietary supplements, thinking they are completely harmless. However, if anything can have a positive effect, it can also have side effects too. You obviously are sensitive to one of the ingredients. And to think you were paying good money to inflict pain upon yourself, and not even getting the benefit you hoped for! Be sure to leave feedback where you bought it, since you said there were all rave reviews. Glad it was a simple fix! Jan [ more ]
Wanna Be Healthy Oh BINGO! When you girls first asked if I added or changed any medication that might be messing with my hormones, I thought - 'nothing has been changed for a long time.' Then I remembered that I added a new med I was trying from Puritan Pride and that was about Christmas time when all of this pain started. It's Libido-Max. great reviews on it, but when I went to reorder because i was running out, it costs more than I wanted to pay and I wasn't getting the benefits it promised. A few hours... [ more ]
Jan Dollar I'd see your GI first, but your GYN might be a good choice if you can see him/her easier. That way, if it is not GYN related, it can be quickly ruled out. More than a decade into menopause it is less likely to be "female related." Plus, at your age, your ovaries should be fairly well inactive. If you had vaginal bleeding I'd be more concerned. More likely is that this is a partial obstruction. I've been having one myself the past few days. Always in the same spot. Crampy pain that comes in... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Are Uterine Polyps linked to FAP (Familial Adenomatous Polyposis?
SB Sara B.
Sara B. UPDATE: I'm currently 10 weeks pregnant with our second child after about 3 years of trying! I highly recommend The Center for Reproductive Medicine in Mobile, AL for those in the area. They take great care of you throughout the whole process whether you are in need of IVF or fertility meds in addition to TTC. I still have not found any info on whether or not Uterine Polyps are linked to FAP. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Intro and Peritoneal Inclusion Cysts
L Liberty15
sweetpeasmom My daughter, age 22, was diagnosed with peritoneal inclusion cysts last year. She had a colectomy with jpouch formation and diverting loop ileostomy 12/2011. She has not yet had her takedown due to complications (initially an abscess that took almost a year to clear up) and then PIC. She has had multiple drains inserted, as the PIC caused severe pain while walking, with intercourse, and pain after peeing. Birth control was never suggested, but I read something about it, so the docs agreed to... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pain increase and delayed peroid
B beckysmom
beckysmom Thank you Jan. She finally got her period today. [ more ]
Jan Dollar Just a guess, but I would suspect that the scoping could add extra irritation to an area that was already engorged and primed for pain. Could even be a leftover ovarian cyst from a prior cycle that was swelling again from her current hormonal phase. Any recent weight loss? That could delay or skip a period too. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Cyst, scar tissue or fistula?
S Sweetie1234
Sweetie1234 Thank you all for the responses! It's nice to know I'm not the only one dealing with this. I have an appt. in a few weeks with my surgeon for him to examine me and talk about my options. I also have a pelvic MRI (with contrast) scheduled, which I'm hoping will give me more insight on what this is. I'll let you all know when I get some answers! [ more ]
liz11 So best way for them to see whats going on is a combination of a Pelvic MRI with contrast AND an exam under anesthesia. Whatever you do , please please please find a surgeon who is very experienced with this stuff. [ more ]
Ashlea Sounds like what I had. I had a rectovaginal fistula. It started out small and within days it grew to where it was painful to sit down. My gyno DR said it was a cyst so I went in for surgery only to find out that it was a fistula. It was a wasted surgery and a painful one for no reason. After finding out it was a fistula, my gastro DR put me on Remicade. I think that it is a miracle drug. Not only is my fistula gone but my Crohn's is under control. I would definitely get a second opinion... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Bump
P Pluot
Pluot Went a lot better than I expected! The on call GI examined me and said he thought it was probably folliculitis but he wasn't confident enough to send me away so his office called the surgeons' office and got them to squeeze me in with the CR surgeon on call immediately. The surgeon was a total butt about having to see me (the first thing he said when he walked in was "Your GI made it sound like this was some kind of EMERGENCY" and then he made a snide remark about how I should have gone to... [ more ]
liz11 were your ears burning danielle??? [ more ]
Uc-Danielle That's how my fistula began and my surgeons dumb nurse told me to go see to urgent care and she said they don't cover that and turned our being a fistula. Better safe than sorry. [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Early pregnancy, swollen fistulas
K ksmarisa
Living ❤️
KabbyBake I found out in June that I was pregnant during my prep work for "exploratory" surgery. I still had the surgery just had to be awake for it. They thought it was the gland like you, but realized it was a fistula. My surgeon put in a seton for the duration of the pregnancy to keep me from having to be on the antibiotics. I has swelling and bad inflammation in the fistula until I started eating according to the Paleo diet. The fistula can't heal closed because of the seton, but its not bleeding... [ more ]
ksmarisa Thank you Jan and na for the responses. I saw the GI NP today. She was very helpful. She ordered lots of bloodwork, including folate, vitamin d and b12. My hcg has also continued to rise well. My White blood cell count is elevated. Between the NP and OB, they have started me on augmentin 875/175. For those who have taken augmentin what is considered a low dose? I'm so nervous about this... Any thoughts and experiences welcome. Thanks so much! [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Abnormal Pap
W winnie
Lesandiego I m ditto SuziQ except mine was about 30 years before my pouch. Never had another abnormal Pap. [ more ]
SuziQ I've had several abnormal paps showing cervical dysplasia. After recurrence I had cyrotherapy to remove the cells (that was likely 8 - 10 years ago). I haven't had a recurrence but know once you have it, you are likely higher risk for cervical cancer. I don't believe it's linked to the pouch, even though mine came after the pouch. I believe as others have said it's related to sexual activity and heredity. Most women in my family have also had it and either resulted in the loop procedure or ... [ more ]
skn69 I had my 1st abnormal pap smear when I was 23...it came back with level 2 dysplasia...3 months later I was level 4. I had already had my pouch for 5yrs by then...I was followed by an gyn-oncologist and treated over the years with the level going up and down...they did lazer, chemo and a whole lot of other treatments but I refused the hysterectomy on principal (it was a precautionary measure that I wasn't willing to take). In the end it took 5 yrs for it to get totally under control. I still... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
mini-pill effectiveness?
M Melee
Jan Dollar Should be fine, but if you are concerned about it, how about a patch instead? Of course, preventing ovulation and lightening up your periods are two different things and the hormone requirements are different. So, your OB/GYN would be the best one to tell you if the mini pill was enough to prevent pregnancy. Jan [ more ]
See 1 reply...
J-Pouch ForumsWomen's Health & Pregnancy
Glucose Tolerance Test
A andrea951
Jan Dollar I agree. If you can eat candy without it immediately causing diarrhea, you can do this test. It gets absorbed in less than 30 minutes. Jan [ more ]
clz81 yes, you should be totally fine! no problems taking the test. they test you after an hour so there is no way it could make it into your pouch that fast. the sugar hits really quick, which is why people get sugar highs and lows. [ more ]
boogiemomz I had mine and it was normal, I drank the stuff, lab took my blood an hour later and sugar was down, I'm good to go. Having no colon (assuming you have no colon) shouldn't affect how your body picks up and metabolizes the sugar, as it will all get absorbed before it reaches that point. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Same Sex Pain Months After Surgery
kblgalkblgal
clz81 have a baby, that fixed my issue...ha!! but seriously, it was pretty horrible for me until my son was born. now everything is so much better. but know that your'e not the only one...seems like its most of us. [ more ]
skn69 I understand the pain, pressure and spasms and honestly believe that those muscles need help and the zone needs lubrication. I went through the whole process including the severe tightness (felt like a virgin every single time!) and the horrible soreness afterwards like someone had cut me up inside... My Obs-gyn at the time suggested not dating men who measured more than 8inches...! How was I supposed to find out? Ask them all to belly-up to the bar and let it all hang out? Walk around with... [ more ]
Cataja If I remember correctly...I had pain for the first couple of years... [ more ]
See all 8 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy Cramps
M MBarrett
JessGoguen Hi, I just delivered a healthy baby girl on 10/23 just 10 months after my takedown. I opted to have a c section to not stress my pouch w pushing and labor. I had two pregnancies pre-pouch and can definitely say the cramping you would want to worry about would feel like terrible period cramps not like the cramping we get with our pouches. I had a pretty uneventful pregnancy and recovered from the c section rapidly. Talk w your doctor about what symptoms you should keep an eye on and I am sure... [ more ]
MBarrett Thank you! Going in for my second ultrasound on Wednesday…can't wait! Think I will pass on the Doppler because I would literally use it every hour and totally freak myself out..so appreciate the kind words and advice! [ more ]
clz81 I think all women (especially with their first pregnancy) will go through this. Any time you feel a twinge or a new pain or a discomfort, it's going to freak you out a little bit. I was constantly worried with my first, and I'd pull out my doppler to check the baby's heartbeat every few days until she started kicking. It's a nervewracking time until 16-22 weeks when you can start to really feel the baby move. It will give you reassurance, trust me! I know you still have a few weeks, but try... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Period Hell
G GraceL
GraceL No Liz I haven't been checked for any of that I keep asking about these things just told about medication to take so maybe I need to be more stricter part of me is worried due to my jpouch but I'm sure they couldn't do any harm if they are properly informed. I'm glad to know that this helped you and I'm sorry on top of everything you also had to I through other things. It's just so good to hear that others had issues. I've been feeling quite on my own and I feel stupid not being able to deal... [ more ]
liz11 grace totally understand your situation and concerns. Ask about the Mirena. They can put that in.. in office. You don't need knocked out or iv's to have it put in or taken out. Mirena works for A LOT of people. They tried it on me.. had it in for five months. But I was an unusual case.. as usual... and it didn't work for me. But it is worth a try as it really is not invasive medication wise like other options. also have you been checked for any other problems..polyps, endometriosis. I had... [ more ]
GraceL I'm so glad I'm not the only one. I always get my bloods checked around my periods and my iron while low isn't low enough for a transfusion so I deal with extra tiredness ontop of the usual tiredness. It's just frustrating that all the medication effects your hormones. I'm glad I'm not the only one trying to avoid medication. Im lucky that my periods haven't one back into the almos twice a month stage it used to be in and comes once a month however with the build up the week before it feels... [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Starting 2nd try IVF
K ksmarisa
Kteacup Hi ladies, I, too, am about to start my second round of IVF next month. I've had my j-pouch since 2004, and I've been relatively healthy ever since. But at 32, and after a few years of trying, we started our first IVF cycle last year. We did ICSI, and it resulted in two embryos. We transferred one which took, but we miscarried at 8 weeks. A few months later, we transferred the other one (FET), which also took but we lost it around 6 weeks. So here we go again. This time, we're going for a... [ more ]
rockandroller Pregnancy was also pretty pouch-friendly for me, as it slowed things down. We were going to do icsi but didn't, and I can't remember why, but they decided it wasn't necessary. I only had made 3 embryos when we went through it and put them all back in on transfer day. I am lucky enough to have a 4 year old son out of it. I wish you the best of luck. [ more ]
See all 2 replies...
J-Pouch ForumsWomen's Health & Pregnancy
10 weeks... and freaking out!
S SKadett
JillM EVen women without our issues get worried in pregnancy. First, its a totally uncertain process. Second, you are caring for a new life. Third, your hormones are nuts, so everything is amplified. Take a deep breath and remember that the dr was likely giving you worst case scenarios. I have a perm ileo and had a near total obstruction during my first pregnancy due to the adhesions the dr mentioned to you. It was touch and go if I might need surgery, but in the end I didn't. But here's the... [ more ]
clz81 I tried to post a reply yesterday, but doesn't look like it took. Basically, don't panic!! There are a whole bunch of us on here that have had totally normal pregnancies! You've gotten pregnant, and that is typically the more difficult part after surgery. Your pregnancy will likely be very similar to anyone else, except that you'll have an increase in frequency especially the last trimester. You may feel some pulling around the scar tissue as your belly expands, but I don't know that it... [ more ]
Bergie77 Skadett where do you live in Canada? [ more ]
See all 3 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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