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Hi guys,

I'm 25 and almost 1 year post takedown--26 weeks pregnant! It was unexpected as my husband and I thought (due to research we read about IPAA and J-pouch surgeries that I would have problems conceiving. That doesn't seem to be the case, whether because we were very lucky or perhaps because my surgeries were laparoscopic--there is very little research about how laparoscopic IPAA affects the established infertility % post surgery, so no way to know for sure I guess...) 

Anyway, we are very happy. And it has been a surprisingly easy pregnancy. I feel very blessed. I experienced very little sickness, and my appetite has been voracious. I was slightly underweight before pregnancy, but I have already put on 30 lbs during the past 6 months, which we think is a good sign! 

However, from about the beginning of the second trimester I have experienced increased frequency, along with terrible butt burn and itching. I was going about 5 or 6 times/24 hours before getting pregnant. I did have a bout of C-diff come on about a month after takedown (we thought at first pouchitis, but I had had C-diff when I had UC and my GI's test for it was positive. I took 4-5months of Vancomycin, and I was still taking it when we conceived. It completely cleared up the C-diff and bad symptoms.) When I had C-diff with the pouch, the symptoms were terrible--frequency and urgency, but the worst part was more the gas pains and problems evacuating the pouch. 

I am now going twice as often as I was before pregnancy...roughly 12 times in a 24 hour period, with 4 or 5 of those at night. I don't really have any pain, and I am also able to pass gas normally without leakage (that was a big sign of C-diff with J-pouch for me.) But the constant going is murder on my backside. It is constantly raw, burning, or itching--sometimes even bleeding when I wipe. The bleeding seems to be all external, not internal from the pouch, and I don't think the frequency is related to food so much as to the shifting of the pouch, pressure, or hormones. My diet is the same as pre-pregnancy, and I rarely had butt burn then. I also seem to have made the issue worse. I tried a handful of popcorn a few nights ago, and I am now having more butt burn, loose stools, and even some leakage (during the day, not at night.) I have been pretty much unable to eat nuts, hard seeds, kernels, or uncooked leafy greens since takedown, but (sigh) I am a big lover of popcorn and salad, so I occasionally try a few bites to see if I can digest it now. The answer is obviously still no, but anyway--

I have combed the site looking for butt burn suggestions, but I wanted to add my own question because none of the other threads were specifically asked about butt burn during pregnancy. So, for those of you who have been kind enough already to read my rambling, here are some questions for you:

1. Did anyone else experience increased frequency and butt burn during pregnancy? If so, what (if anything) helped get it under control? 

2. Is it possibly pouchitis? (I know no one here can diagnose, but if it sounds like a possibility, I will need to figure out a way to make an appointment with a doctor asap/what meds to take during pregnancy. I don't really want those added stressors if it seems unlikely. Plus, money is a big concern right now, so any doctor's co-pay I can avoid...the better.)

3. I haven't seen any posts with people reacting to kernels, nuts, and greens exactly as I do. Does anyone else still have major problems with these foods? Did those intolerances every go away for you--maybe a few years post-takedown?

4. My OB really recommends vaginal delivery, and I would like to try for it. But my surgeon last year had said only ever to have C-sections. I now live about 8 hours away from that surgeon/hospital. I have a GI here, but I have only been able to see him virtually since this COVID-19 stuff started up. My 1-year appointment with my surgeon was cancelled--and even if it hadn't been, I really cannot afford to make a 16 hour multi-day trip to see him and ask his opinion. His office isn't so great at returning phone calls either, unfortunately. There seems to be very little research (common problem for us pouchers I think) about the pros/cons of vaginal vs. c section delivery with a J-pouch. It is my first baby, but I do plan to have more if possible, which is why I like the idea of a vaginal delivery so I can avoid creating more scar tissue. If anyone has had a vaginal delivery post-surgery, would you mind sharing your experience with me? 

I know this was a long post. I apologize. Thank you for taking the time to read/reply. 

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Sorry I can’t answer all of your questions because I don’t have all the answers. I had horrible butt pain in the last trimester of my twin pregnancy and it was hemorrhoids that were horrific. I felt like I had a knife sitting up there. I had a hydrocortisone cream that really helped. My Obgyn prescribed that. I also used tucks pads which are basically just witch hazel every time I went to the bathroom. My Obgyn said to not wipe with TP at all get wet wipes and then go in the shower to clean off as frequently as possible.  All of these options helped me tremendously. I had bleeding too.  I had bad diarrhea towards the end of my pregnancy and my GI seemed to think it was hormones... but once I Got the hemorrhoid situation better I was way more comfortable. You could have pouchitis though... my pouch was 13 years old when I was pregnant and very “established” haha. 
My Obgyn would have likely done a vaginal birth IF I only had one baby but did consult with a colorectal surgeon who would have been “on call” to the OR that I delivered in should I have some type of pouch complication. In hindsight I’m almost glad I had a cesarean because I had so much issues with my bottom hurting I just can’t imagine having to deal with a potential vaginal tear on top of it. Plus vaginal tear and having to poop 10 times a day... ugh. 
I’d try to ask your Obgyn If you can get a consult with a surgeon beforehand because Lord knows if your pouch has a problem you don’t want your ob fixing it!!! 

hope this helps a little bit! 

Congratulations on your first pregnancy!

I strongly recommend getting a Bidet from amazon, I have Luxe bidet brand, only 40 dollars. It is very easy to install, I did it myself, though I would not recommend trying installing it with a pregnancy belly! If you have hot water source near the toilet seat, you can have a model with hot and cold water input and warm water would be very soothing down there.

I am 5 months port takedown, and go at least 10-12 times a day. I never ever wipe! Ever! I just use water from the bidet, and only gently pat dry afterwards - very gently. Otherwise my skin gets irritated and I get the itchiness and the burn. Bidet is a life saver.

I had seen a few research articles about delivery with a j-pouch, and the risk with C-section and vaginal delivery seemed similar. You can search

j-pouch delivery c-section vaginal

at google-scholar to access the research articles.

I have also read in the research articles that issues with the pouch function during pregnancy usually occur mostly in the final trimester, and pouch function gets back to normal after delivery.

Since your ObGyn knows that you have a j-pouch, at the first sign of trouble during delivery, they would switch to c-section from vaginal delivery. This happened to many of my "normal" friends. It is not guaranteed that you will have a vaginal delivery.

Vaginal delivery may cause structural damage to the pouch, and if that happens you would need further series of surgeries (and ileostomies) to repair/redo the pouch. If I were you, I would get a c-section. Why risk? I had to have a c-section with my son before my life with a j-pouch, because my son was at a breach position and the cord was around his neck. Millions of women end up getting c-section for much lighter medical reasons than having a j-pouch. Having an artificial organ that is under risk of structural damage is a very strong reason for elective c-section. My surgeon recommended me to get a c-section, if I ever get pregnant.

I don't mean to scare you, but your naive ObGyn has no clue as to how much suffering you would have to endure - with a newborn-  if you pouch would get damaged. You would not be able to enjoy your newborn, and maybe even not be able to nurse your baby if you needed surgeries. I believe it is possible to have multiple children with a c-section.

Finally, I eat nuts chewing them very well. It seems like, for some of us, chewing well is the key to avoiding issues with "problem" foods.

Good luck!

 

 

Well congrats on the baby! That’s some exciting and I’m glad you’re doing well other than the butt burn. Man, that can really reek havoc! 

I actually had my takedown two days after my wedding instead of going on my honeymoon, lol. Like you I didn’t think we could get pregnant without IVF or additional support, but 6 months later we were pregnant! Funny how things work out

Anyhow...my first OB was like yours and didn’t think a c section was necessary. My J pouch surgeon Was like yea, no! You only get one shot at the j pouch and pushing to deliver the bag can really mess it up, big time. Why risk it? So my husband and I talked and we both asked for her recommendation and went with another OB that understood the need for a c section. Like the precious poster we had it planned (although I went early bc I had preeclampsia), but I had the colorectal surgeon on call in case something happened or whatever. Since we’ve have had supervises before with the colon removal and takedown, we are also have more scar tissue so they might hit some of that in there during the c section that they might need to break up or that might make it harder to get at the baby. But, the baby is at the front of the belly and the intestines are at the back so most likely there shouldn’t be any problems. 

Luckily for me, there problems at all but it’s better to have someone on call who can handle these things. I think the challenge for you will be the distance to the hospital. Where would you deliver if not there, locally? In the end, it’s whatever is right for you and your partner or family. Whatever makes you feel safe about your delivery.  

As for the butt burn, I would def recommend the bidet. I also found the calmoseptine ointment helps a lot- it has menthol in it and is like a diaper rash cream that my gastro doc recommended. I use that when things get tough. I don’t think they can prescribe anything tho while you’re pregnant. When you’re not pregnant, you might be able to take cholestyrmine- it’s a powder that can take down the acid and helps reduce frequency, but I doubt that they can give it to you now. Worth asking though.

I hope you can figure out a plan that works for you. Best of luck! 

Last edited by Bubba1028

Congrats on your pregnancy!  I had my jpouch surgery 21 years ago, and am currently 26 week pregnant as well! 

My pregnancy has been pretty normal without too many rough symptoms.  However, I feel like my butt has been more sensitive to what I eat.  Anything spicy I can definitely feel it big time when I go to the bathroom.  I've been avoiding eating spicy food, and anything that's high fiber (apples, whole grains, popcorn, nuts) since that seem to really aggravate my butt.   

My ob thinks it shouldn't be a problem to have a vaginal delivery, but we'll continue to assess as I move along with my pregnancy.  This is my first baby too, so I don't have any firsthand experience, but I've read about other women who have jpouch and had normal vaginal delivery and recovery.  Plus, we want to have at least two kids, so I'd want to avoid having too much scar tissue from having additional surgery if possible.  

Wish you a healthy pregnancy and smooth delivery!

Form the posts above, it seems it mostly the Ob's that think vaginal delivery shouldn't be a problem.

I would take my surgeon's advice over an Ob when it comes to j-pouches. You really need to consult your surgeons on this one. I do not think a regular Ob would have a clear idea of the stakes involved with a damaged j-pouch, and how hard it is to get a new one. They have no idea about the additional surgeries- at least two- required to repair the pouch, months of living with an ileostomy, months of recovery from surgeries, all the suffering and lost time that could have been enjoyed with a newborn instead. They probably never even met a person with a j-pouch before. 

 I know many people who had multiple children with c-section, but they did not have j-pouches. Does having a c-section with a j-pouch prevent having multiple children? I think you should ask this question to your surgeon. If they say that it would indeed prevent you from having many children, then maybe taking the risk of vaginal birth would worth it. But if they say that it would not, then why take a huge risk of going back to an ileostomy when a c-section is a safe option?

Hi all! Thank you for all your replies! I thought I had this set to alert me to responses, but apparently not! 

Anyhow, I cannot tell you how invaluable your responses have been. I'm going to ask my OB at my next appointment whether he thinks a C-section could cause enough scar tissue & etc. to affect our ability to have more children in the future. If so, I would like to birth vaginally to preserve our ability to conceive naturally again. However, if there's little risk of that happening, I think (based on your responses & my surgeon's opinion from last year) that I should push for the C-section. I like and respect our OB and his opinion--but you guys are right about not wanting to risk the pouch. I had a terrible time with the ileostomy--both physically, in that the loop ileostomy I had was terrible to manage with leaking...I also couldn't keep any weight on at all with it, and was horribly depressed while wearing it. I didn't react well to having one, and that was only for 5 months or so, so I think it is safe to say that I'd rather avoid having to return to an ileostomy if possible.

So, thank you! I think I have a clear idea of what I want to ask about and try for now. Hopefully my OB will listen and consider my opinion. If not, it is going to be terrible trying to find a new one! I was still on my mom's insurance plan (I'm 25 and in the US, so I have my parents' insurance until my 26th birthday) but we discovered early on that adult dependents don't get any insurance coverage for maternity. My husband gets good insurance through his job, but only after a set amount of time of working for the company--his insurance is coming through around the 8 month mark of the pregnancy...which is cutting it very close for us. We paid for our OB out of pocket--$6500, so here's to hoping he's prepared to work with me if I request a c-section!

I'm also going to try to get in contact with my surgeon--he is an 8/9 hour drive from where we live now, and it is a hard trip for us to take currently. His office also isn't great about answering the phone or sending him messages. I'm hoping I can convince him to talk to me or do some sort of virtual appointment, rather than making us make the drive to him. If it isn't doable, we'll see about finding a surgeon here to give us an opinion. 

Also, I got a bidet toliet seat installed last week! I am still having some occasional issues with the itching, but it is much better. I think not having to wipe as much/often is helping it heal. What little itching remains seems to be connected to gas and possibly to what I've eaten that day, which I'm going to try to figure out through trial/error so I can avoid whatever food it is for the rest of the pregnancy. Great advice! I'll look into purchasing either calmoseptine or Ilex paste as well, to help with the healing.

Thank you all!! 

@LizAdair Many Dr's are nowadays taking virtual appointments due to the pandemic, so might your surgeon. If I were you, I would just send an email to the surgeon's office to his assistant nurse, and simply ask what he recommends for delivery method. If they respond, then this would be free. If they don't respond you could request a virtual appointment.

Little itching might be yeast infection due to moisture. The bidet is great, but it gets so wet down there, drying off fully is a must to avoid yeast infections. I am 6 months post takedown, so I my frequency is high. During the toilet paper shortages, I ordered a 60 pack of the cheapest washcloth towels from Amazon, and used them to dry after the bidet. The towels dry so much better than toilet paper, as they are very absorbent. 99 percent of the time the bidet cleans so well that there is nothing on the washcloth other than clear water. I got them in white color, thinking I would need to bleach them, but I now wash them with my underwear laundry with hot water. The downside is that the underwear laundry bag fills up pretty fast with my very high frequency nowadays. Of course, you could just use a ton of toilet paper to pat dry. Make sure you fully dry, else yeast infection strikes  fast after all that washing.

I had j pouch at age 24, had baby at age 39, was breech, and I fought for vaginal delivery to avoid more scar tissue (all my docs said shouldn't be a problem, and that scar tissue was some of the strongest tissue, so not to worry about tearing/ ruining pouch). It all went great. BUT... If I have a second kid I don't know if I would try and do vaginal or c-section. My new surgeon highly recommends c-section, but he also thinks all women should have c-sections, ha! I have had numerous conversations with the specialist at Cedar Sinai in Los Angeles where I live and they are some of the MOST informed people about this. They say so much of it comes down to personal opinion, particular cases, and doctors. But they have said either choice is usually on the table. I personally am thrilled i did not have to have a c-section, because my recovery was very fast and pretty easy. I had a blockage the day after delivering, but that was because I ate a stupid complex sandwhich and should have been on smushy foods for a while during post-partum as your guts are all sort of moving back into place. It resolved within a day and was ok. I am not sure a c-section would have made a difference to that.

But three years later I had to have j-pouch tweaked because of a stricture that had probably been there for years, but finally found. I also had a fistula they fixed at same time. I was like you; very hard iliostomy experience (both first time and second time just now), couldn't gain weight, depressed with it, leaking problems etc. But now I am 3 weeks post take down and doing great! I am much older than you, but we still have 9 frozen embryos, and trying to decide what to do with them. (yes had much difficulty with fertility, because of scar tissue: my fallopian tubes don't seem to meet my ovaries properly).

If you are opting for a c-section, make sure you have a GI doc on-hand that is familiar with your anatomy. A friend who had twins who also had a j-pouch had a problem where because of scar tissue when they took out the uterus it had adheared to her bladder and tore it a bit, so there were complications from that. Its SO HARD to make these decisions! good luck.

@jenners posted:

I had j pouch at age 24, had baby at age 39, was breech, and I fought for vaginal delivery to avoid more scar tissue (all my docs said shouldn't be a problem, and that scar tissue was some of the strongest tissue, so not to worry about tearing/ ruining pouch). It all went great. BUT... If I have a second kid I don't know if I would try and do vaginal or c-section. My new surgeon highly recommends c-section, but he also thinks all women should have c-sections, ha! I have had numerous conversations with the specialist at Cedar Sinai in Los Angeles where I live and they are some of the MOST informed people about this. They say so much of it comes down to personal opinion, particular cases, and doctors. But they have said either choice is usually on the table. I personally am thrilled i did not have to have a c-section, because my recovery was very fast and pretty easy. I had a blockage the day after delivering, but that was because I ate a stupid complex sandwhich and should have been on smushy foods for a while during post-partum as your guts are all sort of moving back into place. It resolved within a day and was ok. I am not sure a c-section would have made a difference to that.

But three years later I had to have j-pouch tweaked because of a stricture that had probably been there for years, but finally found. I also had a fistula they fixed at same time. I was like you; very hard iliostomy experience (both first time and second time just now), couldn't gain weight, depressed with it, leaking problems etc. But now I am 3 weeks post take down and doing great! I am much older than you, but we still have 9 frozen embryos, and trying to decide what to do with them. (yes had much difficulty with fertility, because of scar tissue: my fallopian tubes don't seem to meet my ovaries properly).

If you are opting for a c-section, make sure you have a GI doc on-hand that is familiar with your anatomy. A friend who had twins who also had a j-pouch had a problem where because of scar tissue when they took out the uterus it had adheared to her bladder and tore it a bit, so there were complications from that. Its SO HARD to make these decisions! good luck.

Good Idea, and also to have a colon surgeon on deck too, just in case something goes wrong.

Oh, woah! I hope your friend healed and is doing well now, jenners.

My pouch still just seems to be more sensitive to food right now than it was before pregnancy, and the pressure I think is what has me going more often. However, if I eat bland BRAT diet style food, the butt burn and frequency isn't as bad. It just feels so strange/worrying to have had better pouch function 6 months post takedown than at 1 year...

Other than that, we're doing well right now! We have a scheduled a C-section for November 17th. I'm really hoping that everything goes smoothly. I'll try to update after the birth for anyone who's curious, or for any future J-pouch moms who are curious about pregnancy and birth with a pouch. Thank you all so much for replying! It is just so difficult to find good information about these things.

I am 8 weeks pregnant and I had no butt burn/leakage problems before pregnancy, but I sure do now! I am living in a pile of Calmoseptine, and I rinse gently in the shower twice a day to get things clean and healthier. I tried a bidet, but I need the warm steam from the shower to do the trick.

I've heard that the higher levels of estrogen in pregnancy can make our skin more sensitive. As for the leakage... I guess it is just a fun pregnancy event. Ugh.

I'm glad I'm not alone- I was also worried about it.

I'm also nervous about the c-section/vaginal birth debate... I'm not too far along and I need to talk to my doctor more, but I'm personally leaning toward a c-section, as awful as another surgery sounds, but that's because I had some unbelievable hemorrhoids I had to have surgically removed and I just don't want to keep messing with things down there.

Good luck to you!

Hi lina!

Congrats on your pregnancy! I'm 2 weeks out from the C-section now (37 weeks tomorrow) and really want to reiterate how blessed I feel about the whole thing. It has been a good experience so far! The butt burn and frequency do seem to be related to hormones and movement/pressure--not pouchitis, which is mostly good news! (Good because it should clear after birth and there's no discomfort outside of butt burn and occasional leaking if I eat the wrong thing; the only downside is I really have never found a good way to treat the problem during pregnancy. A bland, boring diet and lots of carbs...seems to help me. But everyone is different.)

It is good to hear from another pregnant J-poucher! It makes me feel better too to know my experience isn't unusual. I'll post an update to this thread after the C-section to give details and updates for those of you who are curious. Ultimately, my OB left the decision up to me. He researched and said that the risk to the pouch for IBD patients post IPAA surgery is small--but there is a risk of tearing and damaging the sphincter (which for us is already weaker post-surgery than for most women.) He also told me today, after a routine check/exam, that the area between my vagina and rectum is shorter than usual, meaning it is more likely (not definite, just more likely) that I could tear during vaginal birth. I don't know if the short (perineum? maybe? is that the right word??) area is specific to me or if it is related to the surgeries though. He has also said that it is unlikely a c-section will affect my fertility in the future, BUT again...my OB and I have found that much of this is really hard to determine beforehand. There is a slight possibility that he'll encounter scar tissue inside that complicates the section, but he is going to proceed carefully and cautiously, and I feel confident in my decision to go for the C-section. The uterus is pushed up and out of the pelvis at this point, so it seems like the ovaries/tubes will probably be protected from any serious harm or scarring.

Good luck & congrats again on your pregnancy!

Hi LizAdair!

I'm just now seeing your thoughtful reply! And i noticed you are only about two days away from the big day!

Do keep us posted! I would love to hear how it goes. I hope it all goes smoothly and you recover in no time!

I’m getting close to second trimester now so I’ve got a way to go to get to where you are. It is hard to find other new moms with j-pouches! Please feel free to DM (hopefully I will see it) because it’s always good to make a friend.

Best of luck and hopefully we all get to congratulate you soon!

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