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Ulcerative Colits (updated after procedure)


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  #1  
April 16th, 2010, 02:22 AM
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Hello. I'm fairly new to this site and new to this board and thought i'd say hello
I have been diagnosed with Ulcerative Colitis for lmost 4 years and as i've been told is an autoimmune disease. I do not have any children but plan to start TTC in about 3 years or so. I've been told by my doctor that colitis can upset a pregnancy and I haven't seen a GI doctor yet but should be in the next month or 2. Anyone else here have this or any form of IBD? Anyways hello to you all and hope you don't mind me popping in.
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Last edited by Beneath_The_Rose; June 11th, 2010 at 10:12 AM.
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  #2  
April 18th, 2010, 01:18 PM
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Rose!

Glad to welcome yout hear JM is awesome... supportive place!

I have U/C along with a slew of other things... been having flares again in the last couple of years, but before that it was "quiet" for a few. I don't take medication for it other than Amitiza when the constipation gets bad. It's incrediably painful in the midst of a flare time. I haven't tried tons of meds, nor had a biopsy but doc diagnosed me back in '02 or was it '03, anyways he said it was u/c after going thru a laundry list of symptoms and problems I wasving then. I tried prozac n a resin powder, had severe diarreah then but it can go the other way as well.

I've been TTC with my Dh for over 2 years now and have been pregnant a few times, each has ended in losses... however I have to say that my bowel issues had gotten better while pregnant. So perhaps it's different for each, but you can improve your diet which can help control the severity of the UC in my experiences.
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  #3  
April 18th, 2010, 11:12 PM
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Thank you for your response. If you don't mind me asking are you planning on delivering vaginally or a c-section? Have you spoken to a doctor that has given you any advice as to which way? I personally feel that I would feel much safer with a c-section. You see, Well i'm not sure how to put this without sounding gross or TMI lol but my colitis is very...touchy I guess you could say. I could go a whole day feeling fine but then if I bend over to pick something up i'l be running to the bathroom. During AF when I have cramps that seems to make my colitis act up very bad and I go to the bathroom a lot. So when you think of labor and contractions and the pain of contractions + my colitis and having to go to the bathroom I can pretty much picture me being driven to the hospital while messing myself. I can't even run or jog without having the urge to run to the bathroom. That's just the way my disease has been for me. Any stress or activity that involves to much movement and bending constantly causes the urge. Sorry to be so blunt. but this disease as i'm sure you know pretty much makes you throw shame out the window.

The only way I personally could see me having a vaginal birth which would be nice (though i've long since given up on that thought) would be if a doctor would induce me but i'm not sure if ulcerative colitis falls under the list of things they will induce for.
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Last edited by Beneath_The_Rose; April 18th, 2010 at 11:14 PM.
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  #4  
April 19th, 2010, 02:39 PM
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Hi and welcome. I have Crohn's disease, and had my first child in September. Of course everyone's body is different, so I can't tell you what to expect, but I can share my story.

My doctor wanted me to be in remission for about 6 months before TTC. (the medicine that got me there was Humira.) He said that during pregnancy, about 1/3 of women's IBD gets worse, 1/3 stays the same, 1/3 gets better. You can't get any more general than that! Fortunately for me it stayed the same--stayed away. And I had no problems with the pregnancy.

I'm not exactly sure of the reason you are nervous about a vaginal delivery. As you said, "Shame goes out the window." Well, the same thing is true during delivery. Many women without IBD poop themselves...it's not fun but it's common. If you are just embarrassed that it will happen, believe me, the doctors and nurses have seen everything! Giving birth is a messy process. But it's worth it!

If you're nervous about longer term complications of your UC following delivery, that is something to talk with your doctor about. And they all have different reasons for which they will induce so that's something to talk with them about too.

Good luck, and come back with any questions you come up with.
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  #5  
April 19th, 2010, 02:52 PM
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Hi Rose...

I planned on delivering vaginally... not sure how the uc would be. I haven't talked to my rheumatologist nor my RE about it. Right now I haven't put a whole bunch of thought into what it would be like during pregnancy because I've been having trouble hanging onto a pregnancy. Right now just trying to go thru tests and processes of elimination to "find the problem" causing recurrent miscarriage.

I am trying to get ahold of my rheum and will ask him what he thinks about it, will totally get back to you. Seems like my bowel issues do get a little better with pregnancy tho...

Have you had your gallbladder removed?
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  #6  
April 19th, 2010, 09:39 PM
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Well there are many reasons i'm a bit anxious about vaginal delivery. Not just because of "messing" but I actually have had some problems down there before and i'm not sure exactly what the best course would be. I see my primary doctor may 6th as a followup to some blood tests and he will be referring me to a GI doctor so I can get a colonoscopy done and I will ask them my questions since they will probably know a bit more than my primary doctor.
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  #7  
April 24th, 2010, 10:10 PM
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Any updates on doctors appointments, med changes?

How are you doing?

Thought I'd drop you a line and let you know I'm thinking about you
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  #8  
April 25th, 2010, 12:40 AM
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Thanks :-) Nothing yet. I won't be seeing my doctor until may 6th and he'll probably talk to me about the results of my blood test from there and will hopefully soon get a GI doctor for a colonoscopy and I can then talk to that doctor about my concerns. Lets just hope I can get it done soon!
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  #9  
April 26th, 2010, 05:42 PM
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Oooooh that's only a little over a week away! I certainly hope that theycan give you the answers, resolution and plan for you. There has to be a way to go thru pregnancy and birthing w/out severe flares.
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  #10  
May 10th, 2010, 11:10 AM
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saw my primary doctor. They set me up for an appointment to see the GI doctor june 7th and then after I see the GI doctor I will (or am supposed to) be scheduled for a colonoscopy. I am very angry though that that I have to weight a month because I have to leave this town soon. I am supposed to be starting college for phlebotomy for the fall semester August 23rd in South Carolina but they can't finish the application process until I am down there so I can take the mandatory drug testing at their lab and fo the background checks. I'm going to try and call them and see if they can put me on a cancellation list or something because I need get this done fast.

This is why I hate Medical Assistance. When I wa on my families insurance I could be schedule for a doctor and a colonoscopy within a week. Now i'm on a whole different schedule and it screws everything up. I haven't been checked in 3 years and if you have IBD you know that that isn't very good.


ETA: I called the office and luckily the other doctor in the office had an opening May 17th! So we'll see what happens then.
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Last edited by Beneath_The_Rose; May 10th, 2010 at 01:08 PM.
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  #11  
May 11th, 2010, 05:30 PM
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Nice!!! That's great news!!!

My docs have never checked me internally just symptomatically, flare times and maybe because I've always opted for the HMO's for ins plans... they're so **** cheap.
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  #12  
May 17th, 2010, 10:58 PM
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Well..Update on my appointment yesterday (it's almost 2am and i just can't sleep. ugh) I basically ran around in circles. I went to see Dr.Malcom who was the new doctor who got me in early. Well after filling out the paper work and like a 45 minute wait in the waiting room plus another 15 or so for the doctor to come out she starts asking me questions. Come to find out when she hear i'm there because I want/need a colonoscopy she only does ENDOSCOPIES. The doctor who I originally had an appointment for (Dr. Grahm) is the one who does colonoscopies.

*sigh* Well My appointment to see him is June 2nd. They were going to make it June 16th but I can't wait around. I have to get to SC soon to prepare for school. Thanks to the school never answering there phone and a bunch of other bullcrap one of the classes i need to get into is completely filled. I am luckily signed up for 3 classes though so I can breathe a bit easy on that but I need to leave PA soon because I have a few other things to take care of for school that can only be done down there. I already told my family that if they tell me when I go there June 2nd that I can't get a colonoscopy until July to just screw it then. I've gone 3 years without one i'll just have to go longer. I just feel so frustrated because it's like i'm being torn between my health and my education and to be quite honest I'd rather go with my education because without that I won't be able to get good health insurance and i will be stuck with clowns like this forever.
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  #13  
June 3rd, 2010, 07:16 AM
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Lol I know no one is probably reading this but i'll just keep updated anyways. I had my doctors appointment yesterday and my colonoscopy is scheduled for sometime on the 11th. I will be getting the paper in the mail soon telling me what to buy and and the prep for the procedure and whatnot. This doctor was also very nice and he told me that after the scope (he will be taking a biopsy as well) and I may get put on another pill for colitis that you only have to take once a day. No more 15 pills a day! He even said himself that i', on one of the highest doses he's ever seen. So lets hope everything goes well. He also advised me that I should have a colonoscopy at least every 2 years so he did agree that I was long over due for one. Since I'm not planning on TTC for 3+ years or so I probably won't bother to ask him about how my colitis would effect a potential pregnancy because buy the time DF and I even TTC we won't even be in PA anymore anyways and my colitis could be vastly different by that time so any advice he would give me now probably wouldn't matter 3-4 years from now but I may just ask him his general opinion on childbirth and colitis and what his professional opinion is on c-sections and inductions and normal vaginal births just to get an opinion. If I remember that is lol.
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  #14  
June 3rd, 2010, 09:17 AM
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I'm still reading! Glad you got an appointment, good luck! It's not so bad, I've found that the prep is sometimes way worse than the test itself...
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  #15  
June 10th, 2010, 06:14 AM
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Well i start my prep in 5 hours. This should be a fun day. Hungry, tired, and running to the bathroom. I kind of wish I could just start taking the laxatives and prep now. I don't understand why I have to wait until 2pm to take the pills andthen 4 for the miralax drink. I'm not eating today and I will be going in tomorrow. (not sure of the time yet i need to call them in an hour) so really it shouldn't matter what time I start going to the bathroom as long as I GO. Grr. I'll follow the paper though anyways just so i don't screw things up but it just seems weird.
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  #16  
June 11th, 2010, 10:11 AM
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Well got back from colonoscopy. Entire right side of my colon is completely flared. They want to keep me on my dosage of asacol and is going to try to put me on another medication like remicade I think he said...some type of steroid drug possibly to get the inflammation down and he wants me to take a probiotic before every meal instead of just taking it once or twice a day like i usually was. If medications don't bring down my flare he said I may need to get surgery where they will put a colostomy bag on me and then remove it. I believe he was referring to the surgery where they cut off sections o the colon which is know to cure colitis about 98 or so percent of the time instead of the other surgery where you have to have the bag forever.

I'm still planning ongoing to college in South Carolina but I told my grandparents everything so I may have to get on medical assistance as soon as I can in South Carolina so that I can get a doctor there and all of that stuff. I will be going to school almost full time so i doubt I will be able to find a part time job with medical coverage and since my grandfather is retiring he will be going on a private insurance that I won't be covered on.

*sigh* I almost wish I wasn't going to college so that I could stay here where I already have doctors and medical insurance (even if it is pretty crappy) because at least if something goes wrong it's all set up. In South Carolina i'd have to start fresh with new paperwork, new caseworkers, new doctors, new referrals, new specialists, ugh. But i'm going to college to better myself and that's a good thing.

I didn't bother asking the doctor about future pregnancies because it's so far in the future and right now i'd rather just focus on my colon health and see where it takes me in 3-4 years. Part of me kind of wishes I could just go straight to the surgery because I have heard pretty good things about it and it would be nice to "cure" the colitis instead of just "managing" it. I also am waiting to see the results of the biopsy. And will call on monday to set up an appointment 2 weeks from now for a follow up.



Also completely unrelated...well semi-related. Because I had to take my nose piercing out during the procedure it won't go back in. I'm very upset. Oh well. Piercings are cheap enough to get but still...i had that put in august 09' and was the longest piercing ever and then i take it out for an hour and it's already healed over! Could have let me keep it in it wouldn't have got in the way. Now it's going to be like another 50 bucks to get it re-done.
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still waters run deep


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Instead of focusing on the things that unite us, we focus on what divides us
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Last edited by Beneath_The_Rose; June 11th, 2010 at 11:06 AM.
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  #17  
June 25th, 2010, 08:28 PM
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I was still reading

WOW, so still on the meds and adding the one? How has it been working for you since?

I don't blame you for going back and forth on the going to school in south carolina then having to start all over with new ins new docs... it's allot to think about and consider. Have you been researching their plans down there and ins's for students? Perhaps your doc's office could referr you to someone in SC where you will be when you do go to school. There has to be some good doc's in a college town.

Update when you can
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