Postponing treatment for crohns until i deliever

[millerkat1]

Found outi had Crohns the same day i found out i was pregnant. My gi dr started me on pentasa. Wondering the ramification of postponing the treatment until i deliever in may

 

[Patricia56]

Did you discuss this with your GI? What did he/she say?

You will be handled as a high risk pregnancy and will need special OB care. Might want to start looking for one now and discuss this question with the OB too.

Pentasa is rated Pregnancy Category C

Category C - Animal reproduction studies have shown an adverse effect on the fetus
and there are no adequate and well-controlled studies in humans, but
potential benefits may warrant use of the drug in pregnant women
despite potential risks

Here's a link to more information on mesalamine (the base medication) during pregnancy

http://www.drugs.com/pregnancy/mesalamine.html

 

[millerkat1]

I talked to both my ob and gi. They said they are comfortable using it during pregnancy. Im just not certain about it

 

[my little penguin]

Well you need to consider a flaring pregnant crohn's patient is not a good thing either .
It's a balance thing and definitely not any easy one .
Have you discussed the risks of flaring while pregnant with your Gi/OB?
Since untreated crohn's can be dangerous .

 

[millerkat1]

Im flairing now. They both said itd be ok to take it. This is my first pregnancy and dont want to jinx it

 

[Patricia56]

I didn't mean to imply that you shouldn't take Pentasa. Rather I was passing on informatoin.

Pentasa is almost certainly NOT going to get you into remission unlless you have a very, very mild case of Crohn's.

So MLP's question is actually the one that needs to be considered. Do you proceed with more intense treatment while pregnant in hopes of getting into remission?

Here are links to some reputable resources that discuss pregnancy and Crohn's. The second is dated 2009 so there may be more recent opinions that offer different guidance.

http://www.ccfa.org/assets/pdfs/pregnancyfactsheet.pdf

http://www.medscape.com/viewarticle/589848

Overall, maternal health is the most important predictor of a good birth outcome.

It seems to me that you need more information on the severity of your Crohn's and how it might affect your ability to nourish your child if your own ability to absorb nutrition is impaired by Crohn's.

Best wishes and Congratulations

 

[millerkat1]

I was just told last week i have Crohns. And told to start pentasa. They say the crohns is what is keeping my ulcers from healing

 

[Patricia56]

Do you mean intestinal ulcers or ones on your skin somewhere?

 

[Patricia56]

Did your doctor tell you how bad your Crohn's is?

Where it's located (small intestine, large intestine or both)?

Have you been losing weight or are you already underweight?

 

[millerkat1]

I have ulcers in my stomach and duodenum. I have been losing weight. I havetnt seen my gi dr since his nurse called me to tell me i had crohns

 

[Patricia56]

You need to see your GI as soon as possible. Losing weight while pregnant is NOT good. It's just my opinion, not a doctor, but it sounds like you need much stronger treatment than pentasa. Waiting to see if that is going to help is not a good idea if you have ulcers and are losing weight.

Make a list of your questions to take with you to your doctor's appointment. This can be really helpful.

Also this memory trick may be helpful - BRAND

B - whats the Benefit of the treatment

R - whats the Risk of the treatment

A - whats the Alternatives to the treatment

N - what if we do Nothing

D - Decide

 

[millerkat1]

I will see my GI dr on 9/12. He really didnt think i had Crohns. Ive had 7 scopes since january

 

[Patricia56]

OK. Well do what you can to be ready for that appointment, there's a lot to learn.

If you can follow the links I posted and read those articles and then read up at the CCFA website on Crohn's treatment it really help you prepare for that appointment.

Is your baby's father going to be involved? If so I strongly suggest he go to your appointment too.

 

[millerkat1]

Hes not interested in my crohns. Im still in denial about having it. Idont know how a blood panel can determine i have crohns

 

[Patricia56]

Why don't you tell us a little more about how you got diagnosed? What tests have they done?

What symptoms do you have? How long have you been sick?

And maybe I'm out of line here, but if he's interested enough in you to make a baby together then he darn well should be interested in your health.

 

[millerkat1]

Since last summer ive been having a lot of nausea vomitting and immense eligastric pain. Last 60# i less than 2.5 months. Did an upper scope just showed gastritis. Pain continued
He did u/s's, multiple cts and did some tests for gallbladder. All were normal. All my symptoms continued. In September a ct showed colitis, had a colonoscopy which was normal. In december i started vomiting blood. Had an upper scope showed multiple ulcers. 8 weeks later there were no ulcers. Symptoms continued. May i had blood in my vomit again was rescoped and had multiple ulcers. My gi dr referred me to mayo for nonhealing ulcers and chronic abdominal pain. Went down to mayo they did and upper scope twice which showed ulcers. They did a gastrin tests which was elevated. So they thought I had a gastrinoma. About 3 weeks ago i was vomiting and pooping blood. Did upper abd lower scope which showed chronic inflammation. My gi dr decided to do the IBD sgi diagnostic blood test which showed I have Crohns

 

[Jessy]

Hi Millerkat1 - Congratulations on your pregnancy, but sorry for your recent diagnosis. In my opinion, being in a flare during pregnancy is more dangerous than most drugs used to treat Crohn's Disease. My main objective at this point would be to get out of the flare. Prednisone and Pentasa are usually deemed safe for use during pregnancy. The Pentasa is not likely to get you into remission, but a taper of Prednisone may and then the Pentasa can keep you in remission.

How far along are you in your pregnancy? It is also possible that you may go into remission on your own while pregnant, as pregnancy tends to naturally lower your immune system.

I was on Humira throughout my pregnancy and delivered a 10 pound healthy baby boy naturally. I felt great throughout my pregnancy but flared afterwards. Good luck with everything. I think it is most important to keep in constant contact with your GI and OB, they will help you make these difficult decisions.

 

[millerkat1]

I am 6 weeks along. My gi dr and ob dr both assured me that the pentasa would be fine

 

[Patricia56]

You have been through a lot. I'm sorry - it must have been terrible.

Was it Mayo that diagnosed Crohn's or your local doctor or both? Well, I'm sure they occasionally make mistakes, but if Mayo diagnosed you with Crohn's then I would accept that diagnosis. They never did an MRE or a pill cam?

What happened with the gastrinoma diagnosis? If Mayo felt that was the correct diagnosis then the treatment plan would be very different.

The IBD diagnostic test is not regarded as very reliable but you have many other symptoms and signs that support a CD diagnosis. And it sounds like they have ruled many other things out.

If Mayo and your local doctor don't agree you are going to have to confront that with each set of doctors and have them justify their diagnosis as well as discuss treatment.

Have you tried any dietary changes to see if they helped?

In terms of practical advice, I suggest you go on an exclusive liquid diet - Boost or Ensure are OK - right away to see if that will help. It will also improve your nutritional status which will help the baby.

Ask the GI for a referral to a nutritionist.

 

[millerkat1]

It was my GI dr at home that diagnosed me with Crohns. I dud the pill cam and it was normal. I was suppose to f/up with Mayo for the gastrinoma but my gi dr said that Crohns can cause the elevated gastrin. The IBD duagnostic test showed i had 3 genetic mutations that are seen in Crohns. I havent tried dietary changes other than those changes i made to heal my ulcers. I will ask my hi dr for a referral to a nutrionist

 

[millerkat1]

Im totally in denial about it

 

[millerkat1]

Talked to my GI dr he said pentasa isnt going to put me into remission. But he wont put me on prednisone until after 1st trimester because the risk of cleft lip

 

[CarolinAlaska]

I see your story now. I second the idea of complete enteral nutrition. It brought my daughter to a really good place for several months, she gained 20 lbs in about 4-5 months. Pregnancy right now isn't ideal, but it's going to be okay. What other meds are you on besides the pentasa? Are you doing prenatal vitamins? I'll keep you in my prayers.

 

[millerkat1]

Im just on pentasa, folic acid, prenatal and ranitidine