I was hoping you may be able to give me a little help and advice.

I have FAP and have an internal pouch. After IVF i am expecting my first baby in November. I am almost 27 weeks pregnant. Everything is going lovely and i am keeping really well apart from being extremely tired.

What concerns me and after the visit to my consultant at James Paget Hospital today worries me a lot is the fact that no-one seems to understand my condition and the fact that I do not absorb iron. My last blood test showed that in just four weeks my ferritin level had dropped from 99.2 to 40.7, I cannot take iron tablets or syrup as these make me very sick and have no affect on my iron levels, I usually have to have iron infusions. The point of this visit to James Paget today was to talk about me having an iron infusion in the next few weeks because of how quickly my iron levels are dropping, if they get to low I faint several times a day, being pregnant this is a worry that I will hurt the baby if I falls badly.

The consultant, who I couldn't understand very well and I am sorry do not know his name as he never introduced himself to me, could not understand that I cannot absorb iron, he told me to eat more meat, eggs and drink lots of milk and this will give me about 30% of iron which will keep my levels up, he had not read my notes, could not understand anything about the operations I have had and left me feeling very concerned that he is in charge of my care.

I then asked if he had received a letter from my consultant Mr Speakman at the Norfolk and Norwich, who did the internal pouch operation, regarding me having a caesarean section, he told me that he would decide at 36 weeks if I needed a Caesarean section or could have a normal delivery . I am naturally very upset, as there is no way I can push a baby out....when I strain a little to go to the loo I bleed alot from my pouch, it worries me that if I bleed from straining a little what would happen if I push a baby out, and this is concerning me regarding having a baby normally.

I have also started getting pains in my pouch - I can only describe them as spasms now that the baby is getting bigger.

Can you give me any advice regarding iron levels and someone with my condition being pregnant and also your thoughts on me having to go through a natural birth.

I am just getting thoroughly confused. When my surgeon who did the surgery said i should have a C section, then my Doctor who is looking after my pregnancy says he will decide nearer the time.

No one seems to know anything about being pregnant with a pouch, things have been going so well up until this point and i am starting to panic that its all going to go so wrong.

Sorry for the long message, but any thoughts, experiences would be great. To help put my mind at rest.

I have contacted another hospital to see if they are able to provide me with any help and support.

Thanks

Tamsin
xxxxx

I am so sorry for everything you are going through! Unfortunately I don't have any advice regarding the iron, I'm just thinking that you should see another doctor. Can you ask your surgeon for a recommendation to a doctor who has experiences with pouches?

I don't have experience with the malabsorption of iron, but even if you increased dietary iron, it wouldn't affect your iron at ALL?

That being said, I completely sympathize. It was very hard for me to sleuth out an OB who had experience with pouch patients. I would definitely call your colo-rectal surgeons in town and ask who they refer patients to, they often will recommend a specific couple of doctors and you should change to one of those for your OB. Barring that, I would definitely go to a maternal-fetal medicine specialist, which is often called a "high risk" OB, as they will have direct, relevant experience in dealing with a variety of problems, if not specific J-pouch patient problems. They are well versed in dealing with a lot of the nuances of complicated and special pregnancies, and will be more likely to agree with going ahead with a scheduled C instead of risking lifetime incontinence (or worse) from going through labor. I was very happy to have found my MFM specialist and he did a great job with my C. We both agreed that pulling in a colo-rectal surgeon for a consult/assist on the surgery was important, and I met with that doctor before the surgery as well and they did the C together. It was reassuring to know that a colo-rectal specialist was at the ready in case there were any problems related to the pouch or other GI issues.

Googled around for you. I think you should go see this guy, Alaistair McKelvey:
http://www.nnuh.nhs.uk/Person.asp?id=463

I agree with the rest of these folks, go see another Doc, this one clearly has no idea what a pouch is or how to take care of a patient with a pouch....very scary, do not stay with him!

Hi. I had a huge team of doctors for my c section just in case anything went wrong. There was a bowel surgeon present just incase the bowels were stuck to the uterus. Everything went well though except I experienced bowel leakage for first five days and the hospital made me eat solids while this was happening resulting in a blockage. Best of luck. I also had A lot of trouble with acidic bowel movements at the end of pregnancy

I bumped this up because I wanted to see an update....did you find a new doc and are you feeling more comfortable with your coming delivery...

Not much of an update i am afraid. I am still having problems, went to see my GP and he has written again to my surgeon and I have an appointment to see him in a couple of weeks, I saw my midwife who was very helpful and she has spoken to the James Paget Hospital to ensure that when i go and see them in the future i see the actual consultant, because apparently all i have been seeing is registrar's. I still have not had my iron infusion, so that is still draining, but i am seeing the hospital tomorrow so hopefully can update you some more.
When i went for another check up at the hospital, explained the situation to the registrar around my operation and why i didnt absorb iron, i was then even more shocked, as when i got on the bed for him to examine my tummy he turned round and said "oh thats a big scar - HOW DID YOU GET THAT!!!" was he not listening to anything i said before????? Its very frustrating.
I shall update you again tomorrow, hopefully with some better news.
Thank you for all of your support and kind words. Its just getting very worrying now that i am almost 31 weeks.

So sorry you are having problems.I'm thinking of trying soon and GI recommended someone with pouch experience.I hope you find someone better soon.Good luck.

If nothing else, your journey will be ending in a few more weeks and you'll be able to take care of getting your iron levels back to where they should be once the baby is born. There are actually plenty of pouchers who have delivered vaginally so if you go that route, try not to worry. As to the pains, those are unfortunately normal at this point for many of us, the adhesions are probably tearing and there's not much any doctor could do about it, just try to hang in there and do what you can from a dietary perspective and get necessary rest.

Well, finally i feel i am making some progress.
Today i saw a lovely doctor who had read my notes and completely understood everything. He was so thorough.
He is writing to my surgeon to ensure that he has all the information he needs before performing a C Section as well as advising if it is better to have a Gastro surgeon on standby in case there are any problems. He is keeping a check on my iron levels and although they have gone down again, we have decided to try and hang on a little longer before doing an IV infusion. Going back in 2 weeks for another check up. He also spoke about what i want to happen with check ups for the baby once it is born due to this being a hereditery condition, discussed aneasthetic and pain relief. I couldnt believe the difference.
Fingers crossed things are looking much better.
Thank you all for your kind words, will up date again in 2 weeks once i have more info. xx

OMG YAYYYYYYY!

Awesome! So happy for you! One less thing to worry about :-)