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Posted 2/25/2011 12:49 AM (GMT 0)
Hi all. I had my check-up with the GI yesterday. Tried to ask her most of the things some of you suggested to me. She put me back on the Lialda. And prescribed me a suppository in case I need it in the near future. Currently I have normal bowel movements so I am praying the Lialda likes me enough to keep me from filling the suppository prescription!

My GI said that my flare had nothing to do with being pregnant. Also said taking fiber supplements and probiotics are pretty much a waste of money and wouldn't matter if I took them or not. Said that UC is not genetic. So the fact that my husband and I both have it won't mean our son has a higher chance of getting it. Said the best thing for me is to just eat healthy and exercise. I just think all of this is odd. I have read such different things on here and on the internet. So many of you on here take fiber supplements and probiotics. And I thought a change in hormones could play a role in a flare. And I thought I read something on here about UC being genetic. And I have read it on websites as well. Ugh. GI doctors frustrate me. It just seems like it is one big guessing game of a disease.

I do have a question though... My UC is mild and I am now taking Lialda. What are the chances of it progressing? Have any of you started out with mild UC and it became severe over time or does it pretty much stay the same as long as you keep taking maintenance meds?

Thanks!

Posted 2/25/2011 2:43 AM (GMT 0)
I think your doctor was wrong to answer your questions in a matter of fact way. The reality is that even the most brilliant doctors can't tell you what caused your UC or what part genetics play but I personally believe genetics do play a role in developing UC. I've seen too many people here with UC that have children with UC to think otherwise. As far as saying probiotics are a "waste of money", I think that's also a very difficult thing for her to back up. Many people here do extremely well with probiticcs and flare up when they stop taking them. I don't take them myself. I also think it's crazy that she said pregnancy doesn't impact UC. So many people flare after or during pregnancy, it makes no sense to say that hormones DON'T play a role. I can't say with 100% accuracy that they do but I don't think anyone can say that they don't.

I don't think anyone can tell you the chances of your UC progressing. It's another one of these questions that is difficult to answer. My GI said mine probably wouldn't. I guess the statistic is something like 10% chnce it will progress. Mine was very mild and now it is very severe. I am sorry you and your husband are both dealing with this. Did you both have UC before you met?
Posted 2/25/2011 3:17 AM (GMT 0)

notsosicklygirl, I agree with everything you said. I don't know if I should find a new GI or what. She just doesn't seem to have the right answers. I figure more out on my own just by getting on the internet.

My husband was diagnosed with UC at the age of 12. He had his colon removed over ten years ago. He has a j-pouch and has never had any issues with it. So his problem was solved before we met! When we met I was under the assumption that I, in the past, had an acute attack of colitis caused by bacteria. That's what the GI told me. So when my husband told me he had UC I was familiar with it and told him I had dealt with it and it was a one time thing. Little did I know I would get pregnant and come to find that I actually have the chronic disease!

Posted 2/25/2011 4:05 AM (GMT 0)

I agree yet again with notsosicklygirl's post.  When I am asked a question as a dentist I will give my professional opinion but I am very quick to add that there are usually many different opinions on one topic.  I wouldn't be so dismissive and abosolute in my comments especially with something like UC.  You might want to consider switching to another GI doc.  I find that when a doc acts like this it's usually indicative of their poor attitude in general.

MyUC

Posted 2/25/2011 6:08 AM (GMT 0)
Wow, probiotics are a waste of money. I'd better throw away that yogurt that I've been fermenting for the last 24 hours. MDs with closed minds like that are great disease managers but obviously aren't in the business of promoting health and well-being.
Posted 2/25/2011 3:30 PM (GMT 0)

aprilblue said...
Hi all. I had my check-up with the GI yesterday. Tried to ask her most of the things some of you suggested to me. She put me back on the Lialda. And prescribed me a suppository in case I need it in the near future. Currently I have normal bowel movements so I am praying the Lialda likes me enough to keep me from filling the suppository prescription!


My GI said that my flare had nothing to do with being pregnant. Also said taking fiber supplements and probiotics are pretty much a waste of money and wouldn't matter if I took them or not. Said that UC is not genetic. So the fact that my husband and I both have it won't mean our son has a higher chance of getting it. Said the best thing for me is to just eat healthy and exercise. I just think all of this is odd. I have read such different things on here and on the internet. So many of you on here take fiber supplements and probiotics. And I thought a change in hormones could play a role in a flare. And I thought I read something on here about UC being genetic. And I have read it on websites as well. Ugh. GI doctors frustrate me. It just seems like it is one big guessing game of a disease.



I do have a question though... My UC is mild and I am now taking Lialda. What are the chances of it progressing? Have any of you started out with mild UC and it became severe over time or does it pretty much stay the same as long as you keep taking maintenance meds?



Thanks!

This is worst part of UC is that no one knows ! To say he is completely wrong would be a mistake. Even my GI said they are looking into potential genetic factors but they still aren't sure. He shouldn't have completely factored out genetics having a part but you still can't wrong him because he might be right. Also about the probiotic/diets, i see ENDLESS threads about what people should eat, do , not do etc and i just bite my lip. IMO (and my GI's opinion) diet has nothing to do with UC. *Puts on my flame suit. Now i didn't say diet might not effect people different but to say once you have UC you should do such and such is just wrong.
Posted 2/25/2011 3:46 PM (GMT 0)
Hi, goodness.
Probiotics do help me a great deal - and my son's GI swears they've helped some patients for whom nothing else was helping.

But, they don't seem to help everyone, from what I've learned here.

Years ago, anyway, the "party line" on the genetics thing was that UC was "not literally genetic, but that it does cluster in families." So it's not genetic like eye color or blood type, but there is "some genetic component". (For many of us, anyway.)

Certainly a bunch of people in my family have/had it -but not my parents. More like cousins and second cousins. I subscribe to the theory that there can be a genetic predisposition which then at some point may or may not be triggered by something: a virus, antibiotic use, etc.

I have one son who does not have it and one who does. I'd rather he not.... but becoming a parent is sort of a crap shoot anyway. Kids can be born with heart issues, development stuff, or they can become teens and do all kinds of self-destructive things....and even get drivers' licenses. :-) Parenthood does not fit the fantasy any of us have when we decide to start a family!

Some women do find that the hormonal changes, either with monthly periods or with pregnancy/birth, do affect their UC. Mine got a little worse with periods, and gloriously quiet with pregnancy.

You've got a lot to think about..... but what would make me uncomfortable would be a GI who would speak in absolutes about a disease that still holds so much yet undiscovered. Do you have another option for a doc....?
Posted 2/25/2011 4:26 PM (GMT 0)

There are a lot of GI's in that practice. I guess I could just go to each one until I find one that's better??

What kind of probiotic's do you all use? I'd like to try it.

Posted 2/25/2011 4:45 PM (GMT 0)
April, good luck switching doctors! I tried to switch in the same group and they all refused! I've gone through two different groups of doctors (those in the same building) and now my choices for a GI are very limited.... but I plan to switch again anyway. That is, once I go to the university I was referred to. GI's refuse to see me if I am under a referral by another doc. So, Im stuck with him for awhile. He is very closed minded! He told me if I don't fit in the "perfect box" of UC treatment then he has no idea how to help me! Nice, huh? And I am very much outside that box! Anyway, my UC started very mild and within 5 months had spread to the middle of my transverse colon! Hope yours stays mild, I miss that time when I had no pain.
Posted 2/25/2011 11:35 PM (GMT 0)

tryingtokeepmyheadup said...
April, good luck switching doctors! I tried to switch in the same group and they all refused! I've gone through two different groups of doctors (those in the same building) and now my choices for a GI are very limited.... but I plan to switch again anyway. That is, once I go to the university I was referred to. GI's refuse to see me if I am under a referral by another doc. So, Im stuck with him for awhile. He is very closed minded! He told me if I don't fit in the "perfect box" of UC treatment then he has no idea how to help me! Nice, huh? And I am very much outside that box! Anyway, my UC started very mild and within 5 months had spread to the middle of my transverse colon! Hope yours stays mild, I miss that time when I had no pain.

If it was my health i would go to another GI. I dont care if i had to pay out of pocket.
Posted 2/26/2011 3:50 AM (GMT 0)
tryingtokeepmyheadup, I read your Asacol post. I don't know how you do it! I'd be having surgery by now if I were you... You are stronger than I am! I hope you can find a doctor to properly help you. I didn't think UC was a 'perfect box' type of disease. Your situation can't be that much different from countless others who see him. I don't understand why they won't allow you to see a different doctor in that practice. It's nice how they care! Ugh.
Posted 2/26/2011 6:38 PM (GMT 0)
Thanks aprilblue! I don't know how I've made it this far either! Judging my recent blood loss I'll probably be in the hospital a third time with anemia. It's amazing how closed minded these people are around here! I am considering surgery but keep holding out for a miracle with Remicade or the upcoming university referral. Congrats on your pregnancy! My infertility specialist said he wouldn't let me get pregnant without a surrogate because of my colitis!!! I swear I hit a brick wall everywhere I turn. The GI I had before this one actually told me he wanted me to get my tubes tied if he was going to put me on 6MP... gee, wonder why I went to a new doctor! Unfortunately, he's useless too. There is only one woman GI in the area, maybe I'll try her? Anyhow, I hope your disease doesn't spread. I've read a lot of posts that say it has spread for them. Do you/ your husband know how to search for a good j pouch surgeon? Good luck!
Posted 2/27/2011 5:03 AM (GMT 0)
Omg... It seems like you have horrible luck with doctors! Getting your tubes tied and getting a surrogate?? The GI's I have seen say usually people with who get pregnant while flaring get better during pregnancy... Which is why they thought it was odd that I had a flare while pregnant. But obviously they really have no clue, I guess. Frustrating! We live in Cincinnati and my husband got his j-pouch surgery locally. I am not sure the name of the doctor who performed it though. But they did a great job because he has never had an issue with it. I don't know where you live... But I have read that the Cleveland Clinic is one of the best places to go for j-pouch surgery. I hope things get better for you soon!
Posted 2/27/2011 5:26 AM (GMT 0)
I went from mild to severe. Stopped taking all my meds after being flare free for a while then was good for about a year with no meds, caught a nasty cold in december & it turned into the worst flare I've had. Got my 2nd cscope & was diagnosed with severe pancolits. I'll take meds till the day I die now!
Posted 2/28/2011 3:11 AM (GMT 0)
Yeah... That's what my husband said happened to him. He stopped taking his Asacol after awhile because he figured he didn't need it anymore. Now he has a j-pouch! Hopefully Lialda will be all I need... For the rest of my life, I guess!

And I guess I'm lucky mine is still mild then... Because I wasn't on anything for two years until this recent flare. My GI could have really screwed me up with her diagnosis that I had acute colitis that would never return!

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