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Crohn's Disease
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Posted 6/26/2008 8:51 PM (GMT 0)
I have a couple of things to inquire about actually.

One: For those of you who have or taking prednisone, have you ever weaned off of it and then needed it in the time before you saw your doctor again? If so, how much did you take? OR did you happen to ask the doctor how much would be suitable until you met with them again? Beginning May 8, I took 40 mg and then after two weeks halved it every week until I was done. However, my symptoms have gotten much worse again and exacerbated greatly by the subject of my next question.

This is a touchy subject SO if it offends anyone I ask that the offended please stay out if they have no advice.
My doctor told me that I cannot, under any circumstances, get pregnant because my body would not be able to handle it. Chances are that the baby and I wouldn't make it due to the severity of my condition right now. I need to abort immediately, and I was wondering if anyone had gone through this situation before. My main concern is the blood loss that comes with the procedure as I am already losing enough that I can't stay awake for more than 7-8 hours a day. I'm very worried..I'm going to see the nurse practitioner on Monday since my GI is out of town, and I will ask them as well. I really would like firsthand experiences though..

Of course the most pressing advice is needed on the prednisone. I would like to take it in small amounts for a little while and wean off of it again and really need to know if anyone has done this and what amounts they were taking previously and what amounts they decided to take again until the next GI appointment.

Thank you all in advance!!!!
Posted 6/26/2008 8:59 PM (GMT 0)
LMills, I would talk to your doc about both situations. I just got off pred two weeks ago if I were to say wake up tommorrow very ill (my doc doesn't work fridays) I would go to 30 mgs (the highest dose I was on during my last flare) until I could talk to her on Monday. Of cource I have enough pred in the house to do that-If you don't have much left or refills available-then I would look at how much I had and how long it had to last and figure it out that way. (of course I am not a doctor and I know my doctor very well-she would put me on Enbril if I had to do this-I don't know how your doctor will react to you taking meds differently then he prescibed or what advice the doc would give you about how much pred to take).
You did not mention how far along you are but is a medical rather than surgical abortion possible-there would be less bleeding. Also you might want to concider having a transfusion during or after the procedure to replace some of your blood loss.

Mostly, I am sorry you are having to go through this.
Posted 6/26/2008 9:42 PM (GMT 0)
I am sorry you have to go thru this as well and unfortunately it is something you have to go to your doc about.
Posted 6/26/2008 10:32 PM (GMT 0)
Hi LMills! I have never been on pred so I can't help there but wanted to offer a HUG. Next, I support you in any choice you make. That said, is this YOUR choice, or your doctors? If this is not a good time for you to be pregnant, by all means, go with your docs advice. But if you want to keep this baby seek a second opinion. Many people with Crohns are misinformed by their doctors regarding pregnancy. There are many on here that had to see different doctors before they got the go ahead to conceive. Other than that, I have not had any of the procedures so I can't help there. I know it is a touchy subject but maybe amend your title to try to catch someones attention. Add Advice needed about pred and abortion please. (Have you seen the movie knocked up? In my head I said shmishmortion.) Anyway, I hope you find some comfort and advice.
Posted 6/26/2008 10:35 PM (GMT 0)
I would talk to my doctor before doing anything. I'm on prednisone and tapering down. But if I got down low or off and started
feeling horrible again, I would place a call to my GI doctor right away even if I had prednisone in the house. I just feel before taking
anything that the doctor should know what your doing.
Posted 6/26/2008 11:00 PM (GMT 0)
I really appreciate all of your words...
I'm only about seven weeks along, but I can already feel the effects on my body. It's not pleasant so I can very much see why my GI would be against me carrying it out. The pictures from the endoscopy/colonoscopy were pretty disheartening too so I can understand his feelings on this.
I tried calling my doctor today, but he won't be back in the office until early July.
I'd like to have a medical abortion BUT the clinic says I can only do this if I haven't passed the eight week mark. I'm hoping Monday will bring some quick decisions.
Anyway, thank you guys..I will definitely take everything you have said into consideration. It's a relief to have SOMEBODY able to say something.
Posted 6/26/2008 11:45 PM (GMT 0)
Hi LMills,

I'm another person who's been told that her body wouldn't handle being pregnant, so please know you're not alone.

You are facing a very difficult and upsetting decision, and my heart goes out to you.

Can I ask, are you on any medications; methotrexate, for instance?

I.
Posted 6/27/2008 12:15 AM (GMT 0)
May I ask what the difference is between a medical abortion and a regular abortion? I understand medical means it is medically necessary but I guess I don't understand why it would ever lose that designation. Is the difference that if its medical your insurance will pay for it?

Regarding your doctor - someone HAS to be covering.  Tell the receptionist tomorrow that you have an emergency and have to speak to him or a colleague immediatly.  Tell them that you are having surgery and need to find out what the GI complications will be first.

Posted 6/27/2008 1:11 AM (GMT 0)
FitzyK
The difference does not have to do with medical neccessity but with the procedure. Medical abortions you take a pill that ends the pregnancy, surgical abortions are just that. It is usually easier on the body if you can do the medical route.
Posted 6/27/2008 1:13 AM (GMT 0)
I would definitely ask to stay on the pred. I am pretty sure you can take that while you are pregnant. When you are this sick, your body more than likely will naturally lose the baby without you having to do anything. The drs. don't always know everything and aren't always right, so you need to be comfortable with and be able to live with the decision that you make. Take care. Please keep us posted.
Posted 6/27/2008 1:24 AM (GMT 0)
Right now I'm only on asacol. The GI said it wouldn't be enough however and that I will have to consider humira or even remicade.

I've already made my decision of course..It's sad to think about I suppose because the father was never supposed to be able to impregnate anyone so I can't help but wonder about how rare this particular case is.
It's ironic too..I went out to eat for his birthday tonight and we were seated by an extremely large baby shower party. A tad bit depressing. I'm not financially able to have a child right now though, and I definitely am not physically able.

It is nice to know that the medical abortion is not as risky as far as blood loss goes. The description of surgical wasn't very pleasant though anyway.

I took 15 mg of prednisone though by the way and am feeling a little bit better. The cramps are still there, but it feels exponentially better than even a few hours ago. What a shame it can't be taken long term!
Posted 6/27/2008 1:44 AM (GMT 0)
On the pred issue, yeah usually I would agree with LBJ your doc should know what your doing. I however am parinoid about things like tapering pred since every time I tried until this last time I got worse right away so I pestered my doc on every dose reduction. "What should I do if this doesn't work, what if I get swollen joints again..." So, I have heard her answer a dozen times and feel confident treating myself for a weekend or so as long as I call her on her next work day.
LMuills, prednisone can and often is used long term (I mean like decades). Most doctors and most patients avoid that because of the potential for bone loss, cataracts, and other nasty side effects but if it is neccessary it can be used long term.
Sj
Posted 6/27/2008 1:51 AM (GMT 0)
I frankly think asacol is a wimpy drug for my kind of crohns. I think humira or remi would be good. Just FYI I could not stay awake for more then a couple hours for the first 2 years of my crohns dx. I was on 80 mg of pred for a couple of years (I have multiple issues going on).
Posted 6/27/2008 2:05 AM (GMT 0)
LMills,

Your prednisone situation parallels mine exactly. I have NEVER been able to stay in full remission without the use of prednisone. Once I have fully tapered off the 'roids I always relapse (I usually relapse after about 3-6 weeks after fully being off the 'roids). My GI likes to try and start me on 40mg and then have me taper off 5mg per week. If 40 doesn't do the trick (until recently it hadn't) then he puts me on 60mg for a few weeks and then has me taper by 5mg a week. I am on Remicade and Remicade does not do the trick without prednisone. I am frustrated b/c I ALWAYS ALWAYS relapse once I'm fully off of the prednisone. I would like to kick the stuff to the curb, but have come to grips that it is the ONLY medication to this point that actually gives me my life back (no awful bleeding, uncontrollable accidents, etc etc).

I am sorry to hear about your situation regarding the pregnancy. My doctor has told me the same thing, that I as well as the baby would not make it if i were to get pregnant. I, like you, have severe Crohn's and we have to take care of ourselves first. Good luck to you and please update us on how you are doing. I will definitely keep you in my thoughts and prayers.
Posted 6/27/2008 1:56 PM (GMT 0)
It sounds to me like you really weaned off the Pred too fast, and has caused your Crohns to flare again. Like lilturbo, my Gi always has me wean down 5 mg a week. Maybe going back to 20-30 mg (with doctors orders) and slowing your wean down will help.

I too will definetly keep you in my thoughts and prayers. What a rough road you are travelling. (((HUGS)))
Posted 6/27/2008 4:59 PM (GMT 0)
My response may be a bit too much for some so if you will be offended please skip my response.

I wanted to respond to the point you bring up on blood loss. I'm sure every woman is different in terms of the amont of loss, but I have had the surgical procedure and for me it was a lot of blood to see. However, the blood was from the womb, not a vein - it has always been my understanding that that blood loss is similar in nature to a few months period all at once and if your regular periods did not affect you this may not either. My personal opinion.. and naturally you should speak with your doctor on it - your GI and family doctor. I am sorry you have to make such a difficult decision. Best of luck to you.
Posted 6/27/2008 5:22 PM (GMT 0)
My response is also may be a bit graphic for some, so please skip if offended.


I've had the surgical variety and I barely bled at all. I think it really varies from person to person. I was not very far along at the time, but it was like 2 days of a period, and then minor spotting for a couple weeks. I've had friends who have done the medical variety and they claim the bleeding is much more prolonged. I'd really find a doctor you trust to discuss the options, and see which might be best for you under the circumstances. But in either case, I don't expect you should have to be transfused. I've had to have a transfusion before too...totally unrelated...and I know they stink! I'm sorry you have to deal with all this...it's never easy.
Posted 6/27/2008 5:39 PM (GMT 0)

Hey LMills,

I just wanted to chime in for support! I too have been told I shouldn't have babies because I have to take such high doses of medications and because my Crohn's is in bad shape.  I can empathize with how you feel and I just want to send you all the good thoughts in the world! 

I echo ivy6's comments 100% in that you should get second and third opinions about your pregnancy issue.  I had to have my large intestine removed several years ago and I spoke to several physicians about the matter.  Not all supported it, so had they been my primary care physicians, I may be in a very different boat right now.

As far as the steroids are concerned, there's no reason someone in your doc's office can't help you with that question.  They've been using steroids for IBD for decades, someone should have some insight as to how to help you.  Just remind them that they HAVE to help you!  :) 

Posted 6/28/2008 12:29 AM (GMT 0)
i've heard stories about women getting pregnant and symptoms either subsiding greatly or going away completely. but this was only during the pregnancy. once they delivered the disease slowly came back. this may be something to investigate and then bring up to your doctor.
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