Update on preg and Surgery Been Lurking Again

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Christiny
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 4/17/2008 10:08 AM (GMT -7)   
Hi all,
I've been lurking again reading your post which has given me lots think about especially those of you who have just had surgery, god you all sound in so much pain I really feel for you all, and I'm now really having second thoughts about my surgery I had more bloods done today they say I'm 4.5 weeks pregnant my general doctor GP doesn't seem that keen on me having the surgery either suggest they put it off as I might blame the surgery if anything did go wrong.
Thought/hoped I would get to speak to my surgeon today but his now not back from Timor til Monday dont give me to much time to think about things as the op is booked for the next day.
But I was glad to hear my HGC levels were great had explosive D's last night have been worried all day. Not to mention I really dont think I'm as distented bloated as I was which is why they say I need the op.
 
Just concerned now they say the baby can survive the op they just use different drugs to put me to sleep but what about the pain after my pain would surely stress the baby. I really think I just need some meds to help with this flare so baby stay where he/she is.
 
Brought some stuff today called Sustagen you add it to milk says its high in protein low GI that it is for those that skip meals cause we don't have Boost or Ensure doest that sound ok?
 
Thanks to everyone for your support
Dx Crohn's 17/1/08
Dx Endometrosis 2002
Dx Lupus Anti Coagulant 2004
Prednisolone 30mg lowing dose 5mg per week
No meds til after Surgery
4 Weeks Pregnant
 
 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/17/2008 12:23 PM (GMT -7)   
Oh my, congrats on your pg!!!! im so sorry you are having to deal w/ all of this tho.

I wanted to post because we has some similar things....I have UC however, not CD. I also have had severe endo and had to have that removed twice (along w/ partial ovary removal). I am also postiive for Lupus anticoag. PLEASE tell me that you are taking your baby asparin???? Your losses could be related to LAC if not treated. We ttc for 4 yrs and i had a few early losses, and once i started my BA, i was albe to get pg and stay pg.

I just had a daughter (11mo ago). I was on 6mp and in remission when i got pg, but it all went to hell once i was. I started flaring right away, but it did settle down w/ the help of 40mg pred (started pretty early, like 8-10wks).

If your gut is telling you to go one way or another, then please discuss it w/ ur doctors. Do not let them rush you into surgery if u r not comfortable w/ it. Granted, you need to make sure that you are around to have children (now or in the future), but if you want to get meds, and hold off maybe till 3T or even after birth, you should talk to ALL the doctors about it.

I also strongly suggest tath you get a appt. w/ a perinatologist. (high risk pg doc) . They will be familiar w/ ur crohns and all your meds, and can give valuable info.

anyways, good luck! shannon

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 4/17/2008 7:07 PM (GMT -7)   
Well congratulations on the pregnancy. Sure sounds like you are going through alot. Ask as many questions as you need to, you need to feel comfortable. Take care of yourself!!! Best wishes.

Christiny
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 4/17/2008 7:29 PM (GMT -7)   
Thanks Sharon your story is like mine, but no I'm on nothing at the moment hoping to get new Lupus reults back today see if it is active again as it tends not to show when I'm not pg and cause hassles when I am.
still having trouble getting my head around the fact that I'm pregnant though. spoke to gastro specialist again this morning she says predinsolone is not good in pg wait and talk to surgeon but have stool sample done in the mean time as infection might be causing the D's not just the CD.
Dx Crohn's 17/1/08
Dx Endometrosis 2002
Dx Lupus Anti Coagulant 2004
Prednisolone 30mg lowing dose 5mg per week
No meds til after Surgery
4 Weeks Pregnant
 
 


shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/18/2008 4:25 AM (GMT -7)   
Christiny, i don't know about anyone else, but it really sounds like ur GI is much more conservitive than mine. That being said, your GI should not be making the decisions when it come to the pregnancy and what meds are approiate for pregnancy. Granted, they do see alot of pg. patients, however, they don't typically treat pg women. Have you been to your OB yet? And i assume u r waiting on all other meds due to possible surgery??? You really should be on BA right now....(obviously can't start taht if ur having surgery tho)

Well, again, i highly suggest u get to a perinatologist right away. You should be surrounded by a very good team of doctors who all are capable of working together via phone/email, ect. I had my OB, GI, Peri, and Hematologist all who worked together and made rounds about me altest everyother week. It was also worked so that i saw one of each doctor every week, so that i never had to wait to see someone, and if i had ? or concerns, they could be addressed that day by the doc contacting the other doctors. Of course, it has been years of work finding GREAT doctors who are willing to put the work into me, but im so glad i have them....

my LAC also goes neg when im not pg.....as soon as i started taking BA (alone w/ fertility treatments) i was able to hold on....

im really praying for you, and really hope that u can atleast get a consult w/ a peri while ur waiting for ur surgeon. good luck, and i will be checking on you! shannon

shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/18/2008 4:28 AM (GMT -7)   
PS, i ment to say that my Peri told me that pred was not the biggest threat during pg. Of course flares, and other stronger meds would be more to watch. Pred does cross placenta, but studies are showing that very little passes through. He also told me that he has TONS of asthma patients on it. It did require extra u/s to check babys growth, ect, but my GI, OB and Peri all agreed that it was the less of the evils for me....maybe another opinion might help you. shannon

Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 4/18/2008 5:53 AM (GMT -7)   
Regarding your question, the Sustagen sounds fine. Another product you might consider (I know it is available in Australia, although likely by order rather than in stock at the pharmacy) is Modulen IBD. It's one of the liquid diets that can be used to induce remission in people with Crohn's, if you are willing to drink just the liquid formula and nothing else for at least a couple of weeks. Doesn't work for everyone, but it does work for many. It supplies all the nutrients you need in a day, as long as you drink the appropriate amount (2000 calories-worth, or whenever number of calories are supposed to be eating per day during your pregnancy). This product has been tested in studies that have been published in medical journals. Another possible formula that has been tested, and that I suspect might be available in Australia is Elemental E028. Depending on the country, it is sold by either by SHS International or Nutricia, and again, usually on a special-order basis.

Christiny
Regular Member


Date Joined Jan 2008
Total Posts : 39
   Posted 4/19/2008 3:06 PM (GMT -7)   
Ok gotta ask cause I've never hear of one what is a perinatologist??? and how could hey help me??
my fertility doc/OB/Gynie is not back til Monday so I cant talk to him till then same with my surgeon this week has been the longest ever.
my chemist was able to order Ensure hospital fomula for me so I've been having a glass a day of that and no D's 2 days now thank god.
still feeling nausea now and then but not sure of cause. my beta HGC was 8280 on Friday hoping I can convince someone to test me again tomorrow
as my breast were really really sore in the lead up to when I was expecting my period then by Thursday they were just sore so I was glad on Friday when the results were as high as they were
but now I'm worried again.
Dx Crohn's 17/1/08
Dx Endometrosis 2002
Dx Lupus Anti Coagulant 2004
Prednisolone 30mg lowing dose 5mg per week
No meds til after Surgery
4 Weeks Pregnant
 
 


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/19/2008 7:12 PM (GMT -7)   
Many woman get nauseous during the first trimester and it usually starts at around 4 weeks.  Breast tenderness, bloating, fatigue, loss of appetite are also common.
 
A perinatologist is a doc that specializes in high risk pregnancies.  They have more experience with medications and possible complications due to various medical conditions the mom may have.  They know what extra monitering you and the baby may need.
 
Good luck

shannon1
Regular Member


Date Joined Feb 2005
Total Posts : 369
   Posted 4/20/2008 1:31 PM (GMT -7)   
Thanks Dagger!

Yes, a perinatologist is a high risk pregnancy doctor. Christiny, w/ just the crohns alone, u should be seening one, but to add the LAC and history of endo, you FOR SURE should be seeing one atleast during the early part of the pregnancy. They will likely release u come the 2T or so if u don't continue to have problems. Most do not deliver, so your regular ob would and most are there to offer a higher level of info to your OB, so u don't stop seeing ur OB either.

Congrats on your great betas!!!! Have they tested your progestrone?

anyways, good luck! shannon

Stef17
Veteran Member


Date Joined Feb 2003
Total Posts : 1811
   Posted 4/20/2008 3:04 PM (GMT -7)   
Christiny - the diarrhea is a hard one to call. It could be your illness - it could also be due to the pregnancy. I have been pregnant 5 time (2 kids to show for it) and every single time I have had what appears to be a "flare up" at the beginning of the pregnancy. In reality it was just due to the hormone surge. I'm keeping my fingers crossed that that is what you are having and that it is NOT a real, true flare up.

I've also been on prednisone while pregnant. It's not as dangerous as your doc makes it sound. Certainly it is not ideal (no meds are), but it is a decent option if you think it might help.

I don't even know what else to suggest unless you want to eliminate sugars (not natural ones like ones in fruit) and complex carbs. That might soothe your gut a bit if you eat very basic, easily digestible foods.

Keep us posted. We are all very concerned for you!

Stef
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