Pregnancy can be a very anxious time for anyone - don't forget your hormones have already starting changing so things may seem even more worrisome.

Chances are you are just experiencing normal pregnancy changes, but you should check in with your drs if it will set your mind at ease.

As for the scar stretching, it doesn't hurt at all from the outside. If you have adhesions internally, they can cause some pain, but you wouldn't likely feel those until your uterus really starts to stretch around the start of the second trimester.

I had a near total blockage at 17 weeks with my first pregnancy (I have a perm ileo) and as much as it was no fun, we got through it and baby is fine and now a very active, mischievous 7 year old son. I had a miscarriage about two years after Alex was born, then got pregnant again and had a perfectly normal pregnancy and THAT baby is my feisty, independent minded 4 1/2 year old daughter.

The key is having a dr you feel you can call if you have ANY questions. YOu will feel lots of changes and you need to be able to ask questions if you are nervous. Try to enjoy the pregnancy if you can, because if you think you are anxious and worried now, wait till the baby comes

Congrats Helen! It's so hard not to be anxious during early pregnancy, but try to relax and rest and take care of yourself. You had said you were taking antibiotics that you just stopped when you found out. Are you taking them for chronic pouchitis? If so, the symptoms you are having could be the pouchitis creeping back as you've been off of them a couple days. If you need a maintenance antibiotic, Augmentin is probably your best bet. I was on a low dosage the entire duration of my pregnancy. In the weeks to come as your hormones increase, you will probably have significant bowel slowing, which can be great. Don't overdue any bowel slowers right now as you might get stopped up. Don't worry too much about your scar. It will stretch and may feel tight at times, but it shouldn't really hurt. As for a vaginal birth, your OB and GI can help assist you in making that decision. I was able to have a great experience with a vaginal birth, but I had already had a baby prior to my pouch. Good luck in your weeks to come :-)

Hi there, thanks for your advice
I have today been to the doctors and have been advised to firstly contact my GI consultant for instruction on medication etc. my GP thinks I am actually at 6weeks now based on the dates.
(Yes I have chronic pouchitis, which I take anti-biotics for permanently)
I have also been told I can't take immodium so trying to not think about it too much as my pouch is always the first thing to react if I get anxious.

I'm feeling a little more settled today however, I have a blood test booked for Thursday and another GP appointment on Wednesday next week to be referred to the midwife.
I'm still a little apprehensive to get too excited until I know everything is okay. But I can tell already the next few weeks are going to drag.

Again thanks for the advice.
Helen

Helen, please PM me if you would like to discuss antibiotic management during pregnancy. Honestly, you will be hard-pressed to find an OB and GI that have a lot of knowledge when it comes to pregnancy and chronic pouchitis. We are all kind of the guinea pigs. I was the one that came up with the plans (based on all my knowledge I've gained from this site), and the doctors gave the ok. I too had chronic pouchitis that I needed to manage, and it worked out just fine :-) Be hopeful! There are a few other women on here that had to take antibiotics their entire pregnancy, and they made it as well!

I didn't suffer pouchitis with pregnancy, so can't answer with that, but as my daughter grew in there, I had the same issue with my pouch that most women have with their bladders, and I had to empty a LOT more frequently than before I was pregnant (or after). Though 4 weeks is kind of early, I do remember it starting with me pretty early, too, earlier than you'd think (even when the baby was too big).

My outside scar didn't hurt, but I did have some internal scar tissue stretch and hurt, and once it stretched out or broke, I guess, the pain went away.

I had my colorectal surgeon write to my OBs and tell them that I was a candidate for a C section, and went that route. No WAY I was tearing sphincters or whatever! Not when I was doing so well.

Good luck.

Hey Helen, congrats on your pregnancy!

I'm 35 weeks pregnant and a St Marks Patient too.

I am on a maintenance dose of augmentin so can advise if you're worried. I got my consultant (Miss Clark) to write an extensive letter to my obstetrician explaining the need for c-section and about the pouch etc. whenever I thought someone didn't get what I was talking about, I would produce the letter and make sure they did!

Let me know if you have any questions

X

Hi Sarah, Thanks for your message. Great to know there are other St Marks ppl on here and good luck with your section in a few weeks
I'm still freaking out slightly. My GP today asked what she can do to stop me worrying, but obviously I said nothing until I'm holding my little person.
It's like it's taken 2years for this to happen but that's all I was thinking about, and now it's like 'whoah, now what?' Haha
I've only been off my cipro/metronidazole and Immodium for 2 weeks but am already feeling the effects. Up to 15-18 visits per day and bleeding etc. so I really do need to start something soon. I'm due in clinic on the 22nd and have already spoken with the pouch nurse (Zarah) she has advised to stay off all meds for as long as i can but I just can't see that being possible. I'm worried about dehydration as well as anaemia and then just the general feeling ill and tired. I wanted to stay as healthy as I could during pregnancy to give my baby the best chance, but I already feel like I'm going wrong.
Are you local to St Marks? Im nearly 4hours away in Lincolnshire. My local hospital (where I was seen before I had my surgery) didn't have the best experience or knowledge so I'm reluctant to trust them with this process. I think I have seen Miss Clarke in Clinic before, but I am under Professor Phillips.
Have you had any problems throughout your pregnancy or has it been fairly standard?
Do you know what sort of things I should look out for in terms of unusual pains, abnormalities etc.
Also what should I expect by way of monitoring, scans etc.
My GP said today she thinks I will need to see the obstetrician once a month and the midwife In between but didn't really say whether I would have additional/early scans.

Sorry for all the questions :/
Thanks
Helen. X

Hi Helen

I'm also Secretary to St Mark's Pouch Charity, the Red Lion Group, so I live and breathe the hospital and know Zarah very well!

I live about 40mins from St Mark's. I didn't have my pouch surgery there but referred myself about 5 years ago when I started suffering from fistulas and my local hospital was useless!


It is completely natural to be anxious. Ever since having my pouch, anything medical has made me nervous as I worry that people don't understand what it is and that worry is quadrupled when you are pregnant. It's good that your GP knows you are concerned so they can help. If they haven't already done so, they should write a referal letter to the hospital of your choice as you are to be consultant-led. They can emphasise in that letter about your condition and need for regular scans in the early days etc. I had a few more than most early on as our baby was an IVF baby, plus I was concerned about adhesions in the abdomen and whether baby would have room, whether I would get pain etc. There was no problem in the end but it was reassuring. I had my first consultant appointment at 10 weeks. I didn't then see them again until about 21/22 weeks as basically if everything looks ok early on there is not much the consultant can do before 20 weeks anyway! This was ok for me and I didn't stress too much as I had a 12 week and 20 week scan in between. We also paid for a private 'reassurance scan' at 14 weeks as I randomly started getting anxious around that time.


Like some of the other ladies have said, Augmentin (or Co-Amoxiclav as it is also called) sounds like your best bet for an antibiotic if you are suffering. I have been on 3 tabs a day for the whole pregnancy due to fistulating disease and all my scans show a healthy, growing baby. I had to weigh up the pros and cons but tbh, the pain I was in with the fistulas, there was no way my quality of life would have been good enough for the whole 9 months. I also haven't had any urinary infections etc. which are common in pregnancy and put that down to a side benefit of being on antibiotics (every cloud...!).


With regards to loperamide, Zarah was very strict with me and said absolutely not to continue with loperamide (I was on 8 a day). The other option you could try is codeine which works like loperamide, if you haven't already, and has been tested in pregnancy and deemed relatively safe. Again, it's weighing up how much you can cope. In my opinion 15-18 visits and bleeding warrants being on medication. I am now in my third trimester and this is when my visits to the toilet have increased to about 15. It is really hard going and when I really, really struggle, I have taken one loperamide at night. Most nights, I get up about 4 times and prepare myself that I may have an accident. When baby arrives it will all be worth it!


Go through it all extensively at your clinic visit on the 22nd (Is that with Prof Phillips at St Marks?). You can always agree the meds, get the prescriptions and not use them but it's a lot easier that way than having to try and sort it through your GP at a later date. Make sure the consultant clearly lays out all the risks so that you can make an informed decision.


Re. dehydration, I was worried about that but tbh, I have upped my drinks a little to compensate. Babies are like 'parasites', bless them. They take whatever they need first and it is mum left with dry skin looking like death warmed up!


Also, I took advice about where to have the c-section. Not sure whether you are planning to have a c-section, I personally worry about sphincter function in old age so didn;t want to risk it plus with my fistulas I couldn't have a vaginal birth anyway. See what your consultant recommends and have a look at women's experiences on here and on the Ilesotomy Association (IA) pouch forum site....
I was considering whether it would be best to have my c-section at Northwick Park as it is adjacent to St Marks. Miss Clark advised against this as it is not my local hopsital so not convenient for travel and also she said her patients used to ask her to be on standby in case there were any problems with the pouch being nicked during surgery. She said she has given up on that because she has never been called in yet (the uterus is in front of the pouch so technically it would be impossible to hit the pouch without cutting through the uterus and back out the other side - not going to happen!). What my local hospital has agreed to is to have a general surgeon notified and on standby should there be any problems with the bowel generally and I am reassured by that. I think it is worth requesting that at your hospital also.


Regarding my pregnancy, I have been very lucky. We had to have IVF and the NHS refused to do it due to risk factors so it has been a tough journey emotionally and financially. I have had no problems with the baby whatsoever, apparently he is a big healthy boy. The only struggle is this the last trimester, I have found from 30 weeks onwards, due to the baby lying on the pouch causing me to frequently visit the toilet, which then leads to soreness, tiredness and feeling dehydrated etc. You also feel absolutely stuffed after eating like you are going to explode but I love my food too much to cut down, or to eat little and often!


I really do believe you will be fine. Once you have your obstetrician appointment sorted, have had your 12 week scan (or earlier one if you can wrangle one) and have a plan of action for your meds, you will be able to relax a little, I promise.


There is nothing really to watch out for as a pregnant lady with a pouch, only the usual things in pregnancy like fresh blood from the front, excessive cramping (but not from the pouch). Also, I suppose watching out for pouch blockages. My body has behaved well since I got pregnant, you just need to take it a little easier.


If you have any questions, do feel free to keep emailing me through your pregnancy or pm me and I will send you my personal email. I contacted two pouch ladies every so often when I was anxious and that really helped to reassure me.


Best of luck


x

Hi Helen and congratulations! I got pregnant at 38 with my daughter (yeah I'm old...LOL). My OB and my GI doctor worked together and it was great. To be honest, i LOVED being pregnant...even with the extra visits to the potty it incurred. With all the extra blood flow to the nether region, my whole system seemed to adjust really well and after the first trimester (24 hour morning sickness) it was great. I had a csection for all the reasons mentioned above. My abdomen scar stretched and I just kept it well lubricated with stretch mark stuff to keep it from itching and I ended up with no stretch marks. My doctor also had me drinking a ton of water, over 100 ounces a day which really helped with dehydration and the normal swelling that goes with pregnancy. It was the one time in my entire jpouch life that I could pretty much eat anything without problems. I had to be more careful with diet towards the end due to weight gain (first time in my life) and indigestion which was pretty much raging with anything I ate, but other than that life was good. My daughter is now 11 and beautiful! There's lots of support on this forum. Keep us posted on how you are feeling and how its going! Lots of best wishes your way!

Hi everyone, Thank you all for your comments and advice.
I'm having major panics now thinking My pregnancy is ectopic. My sickness seems to be getting worse and now getting frequent headaches and some dizziness. but have also been having 'twinges' on my left side, not really pain, more like a stitch type of pain or a tugging. But it's the only thing I feel other than general period type cramping so wondering why I'm only having feelings on one side and always in the same place.
No bleeding g or anything though so I'm hoping I'm just being a hypochondriac.
Did anyone else experience this, or have major worries about ectopic from the scar tissue, it seems to be all I can think about at the minute and I'm not due for my first midwife appointment until the 29th :-/
Helen x

Hi Helen,I really hope it isn't an ectopic. The sickness doesn't make me think that but f you are feeling dizzy etc. and you don't mind the wait, then I'd go to A&E - not sure if they'd do it but they might give you an early scan.
these things always seem to happen on a weekend. The other thing would be to ring the maternity unit at your local hospital and ask their advice. Twinging can be normal or can be a sign of ectopic so I don't think you should worry too much at the moment til you get checked out. The other thing is to have a hcg pregnancy blood test and then another one I think it's either 24 or 48 hrs later to see if your levels have doubled which would suggest not an ectopic.

Hope you're ok and it's nothing
X

Congratulations! I have had 3 children by c-sections since my surgeries. I took flagyl and Imodium off and on throughout pregnancies for pouchitis. My GI and OB worked well together and both felt c- sections were best. My babies are all happy and healthy. The twinges and cramping sounds like normal symptoms of pregnancy. It is probably more one-sided because baby is implanted on that side I had issues with dehydration during my first pregnancy with my daughter. Stay as hydrated as possibly. I drink boost daily to get extra nutrients. While pregnant I drank a couple a day, it seemed to help. My pregnancies with my boys were great! My kiddos are 7, 3, and 1. Enjoy your pregnancy and try to relax. There are lots of weird feelings in the beginning of pregnancy but are normal. Get plenty of rest, congrats! I am also a registered nurse so if you have any other questions that I can help with let me know

Helen, it sounds like u r very dehydrated. your doc is not providing sound advice by telling u to stay off all meds as long as possible. There are some very safe antibiotics u can take. I would highly suggest getting some fluids and starting something like augmentin. You need to get your pouchitis under control. Also it can't hurt to have an ultrasound to check on the baby. Take care and hope u get better soon!

Helen, hope you're ok? X

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 pain with it so wasn't an ideal situation. I figured it must be dehydration, which has put my mind at ease about all the other pains as I figure its all related but by yesterday I was nearly back to normal but very 'gassy'
At the minute I just have a few stretchy tightening type pains going on all over my lower abdomen and air moving around but I think this is normal from what I've read. Still nausea but not had an attack of dizziness since last weekend and definitely no bleeding other than from my pouch.
Hospital appointment on Monday morning in London so will finally get to see my consultant and get some sort of action plan in place. ATM I feel a bit like I'm in limbo.
The GP I've been seeing said she didn't want to do a referral to the obstetrician until I've been to London. I think I will be nearly 9 weeks by the time I get seen.
But I feel quite positive today. Not panicking at every little pull or twinge. Just taking each day.

Helen

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. Stick to a healthy diet and look after yourself.
If I can give any advice let me know.