Pregnancy - when am i ready

First off don't let the posts about the side effects frighten you so much. A minority of folks have these issues and I think the majority go on to do well on these meds.

Secondly have you ever discussed the possibility of a small intestine bacterial overgrowth. Its just a possibility, but your description of your symptoms sound alot like what I suffered with when I had it. I did a 10 course of Cipro and it knocked it right out me, along with changing to a better probiotic. I am wondering if that is why you are not responding to some of the meds as those would not treat SIBO.

My doc never did any testing for it on me, just went by my symptoms and the treatment worked great.

As for the pregnancy it is thought it is better to go into it healthy as a healthy mom produces a healthier baby. Do you have confirmed scar tissues strictures or do you just have inflammation? Meds will help to heal the inflammation. Surgery should always be a last option, as what is removed can never be put back. Also, surgery has its sides effects too. Just something to think about. Hugs!

Nanners - thanks for that info. I have an appt with my GI nxt week and will inquire about Cipro. Did it eliminate your bloating & D? Also i started on VSL3 about a month ago and it seems to be making no difference at all. Would this also suggest that there is bacterial overgrowth problems that may need something stronger like Cipro, along with the probiotics? Also, is that along the same lines as anti map therapy or is it something else? I suggested anti map to my GI and she said they don't do anything like that!

I'm pretty sure the GI told me i have active disease as in inflammation but i think there may also be scar tissue at the anastamosis site. But they believe it's the inflammation that's causing my symptoms. I'm not convinced as i don't have the awful cramps associated with crohns (i remember these from before my surgery) just the extreme bloating/discomfort & on and off D. My GI changes everytime i visit the hospital and each GI has different info and suggestions. Very, very frustrating!

The aversion to Humira is just a personal thing with me. I would like to avoid it if at all possible and i'm weary there may be some treatment less severe that may help. It's just that alot of what i suggest to the GIs seems to be disregarded - it seems to be Biologics or nothing. But i managed to convince them to give me a prescription for the VSL3 , so hopefully they will also listen when i suggest SIBO & the Cipro. I know what you mean about the surgery also, i think i was very lucky with my 1st one to have recovered well and not had complications. I guess nothing is ever guaranteed and there can be complications there too. So hard to know what to do.

I come from a different point of view. about 8-9 years ago I was at a point where no meds were helping me and the ONLY option I had was Remicade or surgery. I tried remicade and it was a LIFESAVER for me. It saved me from surgery and I've been able to have 3 children. I switched from Remicade to Humira when the remi lost effectiveness. And I just recently quit Humira to switch to Cimzia because the Humira caused me to have a psoriasis outbreak.

I know you are terrified of the side effects, but honestly - Biologics aren't as scary as they sound and the very worst I've suffered is this: mild, chronic sinusitis - developed while on remicade and the psoriasis from the humira - which sounds horrible and isn't fun, but I have psoriatic arthritis anyway so it was within me to have that possibility of an outbreak AND now that I'm off the humira, it's going away. Having experienced the GREAT benefits of biologics, I would tell you that you owe it to yourself to give it a try. You can always stop the meds and they can always do surgery at any point.

I have never had surgery so I can't give you an educated response on how that might affect pregnancy. My guess is that it IS possible, but might have added risks/complications. If I were in your shoes, I would have my babies first (if possible) and THEN surgery later (if necessary).

Have you tried any dietary changes?

Stef

Hi Lila,

Yes about 2 days after I started the Cipro I was feeling much better and was having less diarrhea, bloating and discomfort.

I wonder if the VSL#3 is upsetting your system too. I do know a few members didn't do well with VSL#3 and had to switch to another probiotic. Just a thought!

Hugs
Gail*Nanners*

bloody D, 15-30 trips a day to the toilet, bad cramps, I did not have a life. I feel just fine after the shots

LiLa - I was on remicade for 6 & 1/2 years - the last 9 months of which the remicade had lost effectiveness. It just took me a while to figure out. Then I went on to Humira - I was 3 months pregnant at the time. Most doctors will not take you off of the meds just because your symptoms subside. In fact, just the opposite. To the doctor it is an indication that the medication is working and they will keep you on it. I see that you have a misperception about becoming "reliant" on medications. You have an illness. It is not going away. Taking the proper medications is only going to help you, not cause you to become dependent on them and then ruin your guts if you stop taking them.

My brother struggled with this same concept when he was dx'd with Crohn's. He kept trying to figure out ways to reduce the number of pills he had to take every day. He kept trying to wean himelf only to suffer a flare because of it. You can't look at the medicine like something that is "bad" for you to take. You have to look at it like this: A normal, healthy body functions at a level of 10. Because of the Crohn's, yours only functions at a 6 (or whatever). Taking the right meds will allow your body to function at a 9 (or 10 hopefully), so this is a good thing. I was dx'd as a child with severe RA and then at 16 with Crohn's so taking medicine has been my way of life. Maybe that is why I am so resigned to it and don't see it as a bad thing. I hope you don't feel like I'm criticizing you or attacking you, but I think you should consider a different perspective in regards to medications. They're much more of a help than a danger. Taking medication long-term is hard to come to terms with, but I think that when you see how much better you feel with the meds, you won't mind it so much.

I don't know about the biologics with pregnancy, but as far as weighing the risk vs benefit of the Crohn's meds, the CCFA did an excellent webcast a couple months ago. You can listen to it or read it from here: programs.rmei.com/CCFA139VL I've been on all of the biologics and had no side effects from any of them. Remicade put me into remission for 2 years...

What I went through not on a biologic scared me more then the idea of having to be on one long term. I've had great success so far with both Remicade and Humira.

I don't think it's "narrow minded". I actually understand where you're coming from. BUT, like I said before, I guess I've had the need for meds for the majority of my life, so it just comes as a natural thought process to me that taking my meds is just as important to me as eating healthy foods or whatever. I understand your fears - especially if all of this is relatively new to you. Having done this for 30 years I kind of take for granted the ease with which I swallow my handful of pills everday. I can't imagine what I would think or how I would feel if this was all very new to me. I think it's easy to see why you feel the way you do.

That being said, those of us who have done this for a LONG time know the risk that comes with trying to not to take meds. I feel so fortunate that meds and a proper diet (when I can) have saved me from surgery. I know others haven't had that fortune. So, I look at it like "I would try ANYTHING to keep them from cutting me." But that may be MY narrowmindedness kicking in. :) I, personally, am TERRIFIED of having surgery and will take any med in the world to avoid going under the knife. I have been very fortunate to have little to NO side effects from the meds. The biologics have been a LIFESAVER for me allowing me to avoid surgery AND have 3 children.

Sometimes I think about the long term effects, but I don't think about it for too long because the reality is... I have to figure out how to live right now with some decent quality of life and if the meds can do that for me, then I'll take it. That doesn't mean I'm willing to throw my future down the drain either. It's just so hard to say what will happen ahead of time, so I make the best decision I can and move forward with faith. I believe in God and pray to make the right decisions regarding my meds. I believe when I feel at peace about a decision I've made then I'm doing what God wants me to and I just trust that somehow the outcome (near or far) will be something I can handle. That might not work for other people, but it's truly what gets me through it and so far so good... :) So, didn't mean to give you a big sermon. I just wanted to tell you that I understand where you're coming from and give you some insight on why I feel ok about taking the meds for so long. I sincerely wish you the best in your endeavors to find the right balance. It's something we all struggle with. Please keep us posted on you!!! This is a great group of people here and we only want the best for everyone who has to deal with this rotten illness.

Nanners - i know the risks involved in not being on maintenance meds. I just wish i had been put on them after my 1st surgery 10 yrs ago or had understood this disease back then. I really was ignorant to it at the time. And i know how lucky i am that my active disease is not worse - considering how long i have been med free. I count my blessings everyday but i am aware that it's time to prevent it from manifesting into something alot worse. My GI prescribed me Flagyl yesterday (much to his resistance) but i insisted on it and told him it was just something i wanted to try regardless. I also told him i am willing to try the Humira seeing as nothing else is working for the active disease that they found. I have another appt in 6 wks so i guess that's when i will be starting it!! He also wants a CT scan done in the meantime. What exactly will this tell them? I actually forgot to ask that question. Also he believes that Humira is used successfully throughout pregnancy and cannot see a problem with it.

Stef17 - i think your feelings on surgery are like my feelings on meds! Mine being the more foolish and detrimental! I totally get what you are saying about dealing with the present, maybe i need to stop worrying about what might happen - after all i could be hit by a bus in the morning! I guess having faith in my decision making and the reasons for it is quite important. And nothing is more important than living in the present and having a decent quality of life. That's why i have decided to give the Humira a chance. So were you on meds throughout your 3 pregnancies? Also have any of your children developed crohn's? Thanks for the good wishes, i feel bad complaining when there are so many more people in much worse situations than me. It really is a rotten illness and this forum is a blessing in the midst of all of our suffering.

Wonderwen - were your symptoms bad before you got pregnant? Also were you on any milder medication during the pregnancies or completely med free?

LiLa - I hope Humira does good things for you. To answer your question - yes, I was on meds (asacol, prilosec, prednisone, and remicade) for all 3 pregnancies. For the 3rd I switched from remicade to Humira after the first trimester because we realized the remicade had lost effectiveness and I needed to try something different. I always go into remission during my pregnancies and feel GREAT! I can eat ANYTHING and I have "normal" bowel habits. :) It's divine. If I were younger I'd probably have more kids. :) Ha ha! Anyway, The beginning of the pregnancy with both my girls was bad. I thought I was flaring, but I wasn't. Turns out early pregnancy symptoms mimic a flare - nausea, diarrhea, crappy appetite, weakness, exhaustion, etc. However, both times around 14-16 weeks everything subsided and I was fine.

My children are pretty young (6, 4, & 2) so we haven't seen any gut trouble. I don't know if we ever will, but it DEFINITELY runs in my family (grandfather, brother, 2 cousins). So far all 3 of my monkeys are healthy, intelligent, and happy kids. No health problems whatsoever. I was even part of the Humira study for pregnant women and the HEAD doctor flew from California to my home to give my little one a physical about a year after she was born. He is one of the two doctors who gave "fetal acohol syndrome" a name. He is BIG time in the arena of fetal development and medicine. He said she looked great! That gave me GREAT reassurance.

Don't feel bad for "complaining". I don't think any of us looks at it like that. We all know what it's like to find that balance between dealing with the crap (literally) and going on with our lives. "Worse" is relative. Someone's situation is always better and someone else's is always worse. I'll take my problems any day over someone else's. LOL.

LiLa - the plan was to have a natural birth. HOWEVER, due to something COMPLETELY unrelated to the Crohn's or my meds, my OB decided to induce me with baby #1 and my cervix just wouldn't dilate. I ended up having an emergency c-sec. With baby #2, I found a new OB who was willing to let me VBAC and that was the plan. Got to the hospital with contrax 1 minute apart thinking that boy was going to show up any second only to have OB tell me I was only 1cm dilated!!! They tried to get me to dilate and I just wouldn't, so...c-sec #2. Baby #3 was a planned c-sec because we figured there was no point in trying again. For whatever reason my cervix just won't dilate. BUT... that is a problem that I believe is unique to me and has nothing to do with the meds/illness. If I were you I would TOTALLY opt for pushing a baby out the good old fashioned way because that is what your body was made to do. C-sections are major abdominal surgery and the recovery can be tough. I suppose in some regards it's easier than pushing a baby out of your hoo-ha, but I wouldn't have chosen it from the get-go unless there were legitimate medical reasons to do so.