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Pregancy & Proctitis - Advice Needed

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Posted 10/10/2008 5:10 AM (GMT 0)
Hi All,

I will try to keep this short and sweet. My GI is telling me to continue with the IVF and try to get pregnant. I have proctitis in ONE inch of my rectum. Latest colonoscopy showed no spreading. I do have some blood but maybe 2 BM per day. I am dependent on steriods - everytime I take pred and get off of it I flare up. I am currently doing 2 canasa and one hydrocortisone enema at night. I have had 2 miscarriages this year with 2 of my IVF cycles. I am not ready to give up on the IVF or trying to conceive. BUT I am getting mixed signals and "opinons" from friends. They are telling me I should get the proctitis into remission before trying to conceive. The problem is my GI thinks I have hit a wall and said I basically can't go into "remission" unless I go on 6-MP. It is a category D and I am really not comfortable taking it while pregnant.

Should I just continue with my rectal meds and asacol? I can't IMAGINE waiting for the 6-MP to kick in and I hear it could be months and you have to continue on it. YES - we are looking into adoption.....

We just had genetic testings and I was tested for everything possible. All tests came back normal so they are chalking it up to "bad Luck".

What is remission? Can anybody offer me advice? I have heard the "get well" before trying to conceive.....but I dont understand...if I go on 6-MP wont I be on it for life???? Its just ONE INCH....can I get it better by continuing my rectal meds and asacol????

Please help me understand....

Wishful....Wishful for a baby!

Posted 10/10/2008 5:32 AM (GMT 0)
Remission is no symptoms and no clinical signs of disease...if you're doc is giving you the okay to get pregnant and that's what you want then go for it (there's a chance pregnancy hormonal changes could either keep you the same as you are now, or put you into remission)...Do NOT let others make the decision for you (family/friends) this is your body and your business.

I know for sure it's very safe to use the hydrocortisone enema while pregnant because unlike taking oral pred, very little gets into the blood stream which is why there is virtually no side effects from the enema form...and I should know (for me anyways) I've taken every night for a yr before tapering off of it and also used it for most of my pregnancy as well with no ill effects to me or baby (who's 15 yrs old now).

Don't stress, go with your gut instincts, even with having IBD my gut instincts are still pretty much right on when it comes to figuring things out.

:)
Posted 10/10/2008 6:23 AM (GMT 0)
Sorry to hear about the struggles you are having. I was in a similar situation six years ago. I was doing IVF cycles (tube problems; had them cauterized shut) and the first cycle not much happened. The second IVF cycle the Drs decided that I should be on a low dose of Pred the entire pregnancy. I did the embryo transfer (and started adoption classes), and got a positive test. I was on 150mg Imuran and 5mg Pred the whole time. I wasn't in a flare at the beginning of the pregnancy, but with a history of IBD, they didn't want to chance it. I, too don't have a lot of colon involved; currently 15 inches. Anyway, within a year we had 2 little boys, one adopted, one bio.
I don't know anything about 6 MP, is it a category D in that they really know it causes problems for a fetus? Or is it that no one has done studies? I know Imuran was also a category D and I was on it the entire time. No one had done any studies and my Dr at the time assured me many women had been on it during pregnancy and it was safe. My now 5 year old son is fine.
What do you and hubby think you should do? Are you ready to move on to adoption? Maybe take a break from IVF? It's a difficult process.
Hope that helped a little.
Take care.
Jen
Posted 10/11/2008 2:57 AM (GMT 0)
From what I thought I knew...6-MP is Imuran....
So it is good to hear that you took it the entire time during your pregnancy.

I am just so frustrated with this disease! Proctitis is a pain in the arse. Literally. As we all know. But i am getting soooo upset at people telling me I should be in remission before trying to have children. I have been bleeding on and off since January. Prior to that I was diagnosed in 2005 took some asacol and went about my business. If it is okay to take imuran and be pregnant then I might throw in the towel and do it. My current regime is just not working and i am sick and tired and depressed ....seeing blood all the time!

Sorry to vent. I am just at my wits end.

jenjim - do you have UC or proctitis? What are you taking now?
Posted 10/11/2008 6:54 AM (GMT 0)
I was flaring when I got pregnant. I continued with all my medications including steroids. My girl was born healthy. In fact, I felt a lot better when I was pregnant. Shorty after she was born I started to flare.

Imuran is known to cause birth defects. There are people that have healthy babies but keep in mind that yours may not be.
I'm currently on Imuran and if I wanted to have another baby I would NOT even try until the drug is out of my system. That's just my opinion.
Posted 10/11/2008 11:43 AM (GMT 0)
Hi there, sorry for your frustrations trying to conceive!

Two things-after reading every single article I could get my hands on from Medline Plus (husband is an MD with a subscription to the medline library), and consulting with about 5 different OB-GYN's, I feel comfortable staying on my imuran while I am pregnant. I've posted about this before in other threads, if you do a search you may be able to find out more. Imuran has been used for transplant patients safely for 40 years. There is a slight increased risk of miscarriage and low birthweight babies, but many docs think the problems resulted from the underlying disease, not from the meds.

As for waiting for your proctitis flare to subside before conceiving, that's a more difficult decision to make. Around the time my second son was conceived, I had a bout of what I thought was food poisoning-blood and D that lasted about 3 weeks. (hadn't been diagnosed w/ UC just yet). As my pregnancy continued, I got sicker and sicker, culminating in a wicked flare that lasted 4 weeks and caused me to go into early labor. All together, I gained 7 lbs for that entire pregnancy, I just couldn't keep the weight on.

Granted, I didn't know I had UC, so was treating my "touchy stomach" with a bland diet and immodium.

If your symptoms are stable and they respond to the medicines you're currently on, I'd say it's fine to TTC, even if things aren't "perfect."

For what it's worth, I'm about 7 weeks along (!) with my current pregnancy (taking 100mg's imuran) and have an ultrasound in 2 weeks. Will keep you posted on my progress, keep your fingers crossed for a healthy kiddo!

Best of luck, Erica
Posted 10/11/2008 1:40 PM (GMT 0)
You've received great advice. I just wanted to wish you luck. Spent a lot of years TTC myself and know every positive and hopeful vibe sent your way helps.

If you are feeling well despite your smptoms and are feeling stong enough and are feeling positive enough, then, well, you will make the right decision for your family.
Posted 10/11/2008 6:36 PM (GMT 0)
Proctitis is UC, its just confined to the rectum. wink
Posted 10/11/2008 7:05 PM (GMT 0)
Hi,

If you have a look at www.nacc.org.uk and follow the link to the information sheets (http://www.nacc.org.uk/downloads/factsheets/Pregnancy.pdf), there are some details about pregnancy and a long but clear section on taking drugs while pregnant. Looks like nearly all of the drugs used for treating UC are listed as ok.

Want to wish you the very best of luck. :)
Posted 10/11/2008 7:13 PM (GMT 0)

Kiss520 said...
Proctitis is UC, its just confined to the rectum. [img]/community/emoticons/wink.gif[/img]


Proctitis is not specifically UC located in the rectom, crohnies can also get proctitis, proctitis is simply inflammation of the rectom.

:)
Posted 10/11/2008 11:08 PM (GMT 0)
Hi WishfulMA!

Im so sorry that you are dealing with this. It is tough enough to deal with chronic illness,but to add infertility to the mix, it really sux!

I was not dx w/ UC when i was ttc my first child. We ttc for 3 yrs. I did 6 rounds of clomid w/ my ob, with one early miscarrage and then the rest were chemical pregnancies. Then we went to an RE. I did clomid rounds again, went on BA and progestrone. I concieved after 3 more rounds. Right before delivery, i had my first UC flare. I delivered almost 2 months early. It is not known if my flare had anything to do with it, but i was already in the hospital for preterm labor so it's probally not likely.

Then after 3 yrs we decided to ttc again. I had a terrible time w/ my UC, tons of hospitalizations, ect. I was put on 6mp and pred. I finally hit remission so we decided it was time to try. My GI, OB and my Perinatologist (high risk pregnancy doctor) ALL agreed that it was ok for me to stay on my 6mp while ttc. And htat if i needed pred at anytime, it would be ok to! Everyone on this site will have an opinion about UC meds and pregnany, but ultimatly, it is up to you and your doctors!
Anyways, I went back to my RE and did one round clomid w/ chemical pg, then did two round injectables/IUI and got pg. I flared right away! Went on 40mg pred and stayed on 6mp and pred the rest of the pg, until my ptl at 25wks. I stopped all meds so i could breastfeed if i had another preemie. (which i did).

I was told that i could remian in remission, or could flare, that there was NO way to know which would happen. I had ALL my family and ALL my friends who were aganist me having a second child, but my doctors were confident that we could get a baby here at a decent gestation.

I can also tell you that my peri had many women who were treated w/ 6mp while pregnant. If you have med questions, you should have a prepregnancy consult w/ a peri. It is important tho that ALL your doctors work together. My OB, GI, Hematologist and my Peri were all actually friends, and would hold weekly or biweekly phone consults regarding my care. I would see my OB one week, and my GI and Peri the next week, so i was seeing a doctor once every week for the entire pregnany.

Good luck, try to take it one day at a time. Miscarrage can be so stressful on the body physically and emotionally. It is important that you do what YOU and YOUR FAMILY feel is right. Don't allow others to try to determine your course in life! HUGS!
Posted 10/13/2008 4:31 AM (GMT 0)
Thank you all for such WONDEFUL advice.

If my only two symptoms are blood and a little bit of mucus...would you consider that "severe" proctitis? I am taking my meds but right now really trying NOT to go back on prednisone? I guess my question is ...is it okay to bleed if you are getting checked and not anemic? Can a little bit of blood be a problem during pregnancy? I just had a colonoscopy and there has been no change...the inflamation is still just one inch.

Erica - CONGRATZ! Please keep us updated on your condition and your pregnancy!!!

Shannon - Since I am being treated by a Reproductive Endocrinologist at an IVF clinic...how wold i get a consult at a Peri? Do I ask my current OB for a recommendation? My first m/c was a trisomy 15...but last one my beta only got up to 343 so they really considered that a chemical pg.

Our next step is a FET (frozen embryo transfer). No shots, less stress on my body.

One more thought...someone asked me if because I have inflamation in my body - am I miscarrying because of that? Does my body think the embryo is a foreign object?

Anyway, hugs to all of you!Thank you for your support!

 

Posted 10/13/2008 4:40 AM (GMT 0)
Wishful ((((((((((((((big hug chickee))))))))))))))))))))) I don't have any advise, but I will pray for you.
Posted 10/13/2008 4:39 PM (GMT 0)

Hi Wishful,

Sorry to hear that you're having such a bad time trying to get well, and concieve.  I too have proctitis, just about 5 inches, and was having big time bleeding issues.  My doc also wanted to put me onto a course of Pred, and then Imuran to maintain.  For me this was a tough decision as I too wanted to try getting pregnant.  We were about to go on holiday for a month overseas so I didn't want to start pred yet, so we decided to just wait till I was back have a sigmoid then decide what to do as she knew I wasn't comfortable with the idea of Imuran...like you said it's such a small amount for such drastic drugs!  I was happy enough with how I was when I got home...I think you just get used to the bleeding sad   and decided to cancel my scope.  Glad I did because a few weeks later I found out I was pregnant, and had also noticed that all bleeding had dissapeared...finally after months and months!!!  I was absolutly perfect until this weekend and now I'm not well and bleeding as of this morning cry here I thought pregnancy was the magic I needed!  So don't worry about trying as I am 16 weeks and like I said everyting was perfect until this weeknd...hopefully after going back onto my enemas things will quiet down again.  My doctor had also tried to reassure me saying that it's not ideal to be on those type of drugs while pregnant, but there are lots of healthy babies born from them too!  It's a very tough decision, good luck with it.  I really hope that you get pregnant again soon!! 

Also my doc has never been that worried about my, even after months and I've never been enemic...she just says that it's more of a nuisance than a health threat.

Hope that helps some, take care :-)

Paula

Posted 10/13/2008 6:12 PM (GMT 0)
Hi Wishful,

I'm sorry to hear about your struggles. I was officially dx'd w/mild universal colitis in Feb. My GI said NOT to get pg any time soon. BAM I was pg 2 months later (oops). I was in a mild to moderate flare when I got pg. Around the 12 week mark I went into remission (I cannot take any meds I'm allergic to mesalamine). I'm 27 weeks pg now. My GI said that 1/3 of women go into remission, 1/3 stay the same and 1/3 get worse while pg. I wish you the best of luck with getting pregnant. You can have UC and have a perfectly healthy pregnancy and baby. My OB said she has several patients w/UC and they do fine taking the meds. Please keep us updated. :-)
Posted 10/13/2008 7:42 PM (GMT 0)
Hi again Wishful,

yes, you can ask your current OB for a referal to a peri or maybe even your RE (tho, not sure if the RE can refer for that or not). Even if your insurance covers it and they say u don't need a referal, most peri's want one in writting from your OB. Just ask for a pre pregnancy consult. Should not be an issue. As for your losses, the Tristomy loss, obviously, there is nothing you can do for htat one. What line of treatment do they have you on? Anything in addition to the IVF? Like baby asa or progestrone?

I had so many chemical pregnancies, we just stopped counting. As it turned out, i had numerous things going on....I had pregnancy tissues left inside me after a early 1st tri. loss even after the D&C which was causing my beta to remain positive for the next 4 yrs. We did two rounds of MTX (methotrexate) which did not kill it either....Once my OB put me on BA and progestrone, i held onto the next pg. I eventually tested pos. for two blood clotting disorders to. Since u r having ivf, i assume u have had all the lab work ups???

anyways, good luck w/ ur FET! Maybe this will be the better route so that you are not having to do injections and cause stress on the body!

I am no doctor, and can only tell you my experince. When i had just a little bit of blood and 1-2 BM's a day, i was happy. BUT, i got taken down very fast w/ a flare that came out of no where. I personally wanted to be in remission so i did use pred. It got me into remission fast and i stayed there for the next yr (i was luck as i look back on it)....If your doctors are good with where u r at, then keep your chin up and keep trucking along! Hope we see u post a BFP real soon! Good luck
Posted 10/13/2008 8:13 PM (GMT 0)
WishfulMa, To answer your question, I have about 15 inches affected, so the Dr calls it proctitis.
As far as Imuran during pregnancy, I can only speak about my experience, which was one pregnancy at 150mg/day. I read a lot of literature before agreeing to be on Imuran during pregnancy. My Dr at the time was at Cedars Sinai. A very good hospital. This lady is well known in the GI field, she has been discussed on this forum. Anyway, I looked at studies that compared women who had never been on Imuran to women who had been on it at some point a while before they were pg, some who were on it and got off of it when they found out hey were pg, and others (like me) who were on it the entire pregnancy. The studies found no difference in birth defects between these groups. I was not willing to risk a child who would likely have a bunch of problems when I was so in control in his being born in the first place, I mean I was doing IVF. This is all just my opinion, of course. I vote that you go forward if that is what you and hubby are leaning toward. We did it and it worked out fine. The Dr at Cedars said to me, when I asked about stuff happening to babies said (I quote) "crap happens". Again, I hope that helps. If you feel up to another round of IVF, go for it. FYI, I breastfed my son for over 2 years on it, too.
Take Care.
Jen
Posted 10/14/2008 2:51 AM (GMT 0)
I have been in, almost, the same exact boat. We haven't tried IVF, yet, but we have definitely been having troubles conceiving a baby. I have a 2 1/2 year old little girl, and I had a miscarriage a year ago this month. I was diagnosed w/ Ulcerative Proctitis in March of this year. My GI assumes that the UP was brought on by the miscarriage. We've been trying to have a baby since, with no obvious luck.

My flare up sounds similar to yours. I've been flaring since January and had, what most consider, mild symptoms: bleeding, mucus, urgency w/o going, and abdominal cramping. My GI is always reminding me that my symptoms are mild... (maybe to him)... but they have really added a level of stress and depression to my life that I really don't need!! But, it is definitely considered a flare up until all of the symptoms are gone. I currently take Canasa suppositories every night... they don't seem to be doing the trick... My question is, how do you know when the symptoms are gone if they want you to stay on the meds forever?!?! I do have symptoms now even with the meds... so maybe when they stop, I can wean myself off... who knows?!

He also has told me to wait until I am in remission to conceive, but I'm not wanting to wait any longer. I don't want my daughter going off to school and having a newborn! I just wanted to let you know that there are people in the same boat! Good luck with everything. I'm currently trying to do research to find out different things I can do to heal myself. Please let me know if you find out anything... it is comforting to know that someone else has the same general symptoms and problems!
Posted 10/14/2008 4:40 AM (GMT 0)

WishfulMA said...
Thank you all for such WONDEFUL advice.One more thought...someone asked me if because I have inflamation in my body - am I miscarrying because of that? Does my body think the embryo is a foreign object?



Not necessarily, I was in quite a severe flare when I easily got pregnant with my second child (I also easily got pregnant with my first and that was before IBD reared it's ugly head).

Good luck to you and sending good vibes your way to get pregnant and have a wonderful pregnancy and all.

:)

Posted 10/14/2008 1:10 PM (GMT 0)
I don't know how to post someones last response, so im going to piggyback on pb4's post.

As she mentioned, inflamation does not always mean your body would fight pregnancy. BUT, i can tell you that my perinatologist (and my RE for that matter) both told me that a severe flare could indeed cause a miscarrage. Does it always, no, as pb4 mentioned. If you have not had testing for other inflamatory issues, that might be considered also, there is possibility for one's body to treat an embryo as a foriegn object. This was the enitial thought for me, however, we were thankful to find the other things that we could correct.

I have heard of IvIg usage in IVF for women who have immune related disorders, maybe this is something to research in relation to your UC. GL
Posted 10/15/2008 2:12 PM (GMT 0)
Yes, we have had all the auto immune disorder testing and chromosome(karotyping) testing done. My RE said everything came back normal.

My problem with prednisone is as soon as I go on it.....and then ween off of it...days later the blood comes back. I guess that means I have become dependent on steriods.

I go in today for a sonahystrogram to make sure everything inside is OKAY but I am full with all this anxiety!! MY GI said I have hit this wall and need 6-MP to get into remission. I am not comfortable taking it while pregnant. If I do get pregnant. I dont want to go back on prednisone because its just a band-aid. Its NEVER ENDING!!! mad

Frozenbagel - what are you diagnosed with? What meds are you currently taking??

Shannon - since we do IVF....you have to take progesterone support right after the embryo transfer. I am going to talk about baby aspirin today but I thought colitis patients shouldn't take NSAIDS?

Posted 10/15/2008 5:07 PM (GMT 0)
I was diagnosed w/ Ulcerative Proctitis. Currently I'm only taking Canasa 1X a day. It's not making the symptoms go away, by any means. I talked to my GI yesterday and he seemed completely unconcerned. I'm still looking for a GI that I feel like actually cares about getting me healthy.

Good luck today!
Posted 10/15/2008 6:07 PM (GMT 0)
IBDers should not take NSAIDS but in baby aspirin the amount might be safe enough for an adult IBDer however on the same hand the amount in a baby aspirin might not be effective enough for you either...trial and error I guess.

:)
Posted 5/28/2011 8:47 AM (GMT 0)
Hi

Im 25 and was diagnosed with proctitis almost three years ago. I already have two healthy children concived before I was diagnosed I really want to try for a third, but I'm having my first flare up and I haven't been feeling well for over two months now. I'm feeling now that it is selfish of me to want a another baby with this health condition.
I just wanted to know if anyone else has felt this way and when do you start feeling better with a flare up
Posted 5/28/2011 5:28 PM (GMT 0)
Are you on any medications?

welcome to the forum.
q
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