FRUSTRATED

I hate to say this, but I bleed every day (to the point I have to wear a pad everyday). Both gi docs and surgs have said there is not much too much they can do about it, other then eventually resect when it gets too bad. All I do is try different meds, food combos, etc in order to not bleed so much. Sometimes no solid food helps, but it is in no way even close too a "normal" life, let alone energy to raise children. (I would say I have to admit I like the creamy pb milkshakes for energy, but those get fatting after awhile.)

O really??? wow, so are you anemic? I have been having iron infusions. My last one was this past monday, I have a blood test every 3 weeks to keep on top of it. I just find it all very exhausting.

I have pain everyday all day long..At times it is hard to stand...Yes i also go to the bathroom up to 5 times a day...The pain is very real and i get sick at times...Tell me is all this normal for crohns disease...Thanks for your help..

I can only speak to my experience. Yes, I have pain all the time, but this is symtomatic of severe disease for me, kind of like a chemical burn pain in my guts and anus constantly, and of course severe bone pain (like someone took a baseball bat to me). I am always anemic and get iron or blood transfusions as needed. (Usually try to be proactive with the iron, so I can aviod blood transfusions.) At one point I was going between 30-40 times a day, talk about one's never ending poop! I really went thru the creams and TP when that was going on. I am down to about 10-12 a day, and on occasional really good day 3-8. I am currently on MTX injections and azo (aka immuran), but that varies by month right now, because I am also female I am having really bad blood loss issues at that time of the month (I get hospitalized, and repeatly so, sometimes several month long periods). Yes, I constantly feel like I have at least a bit of the stomach flu due to this disease and that is the closest thing I can relate it too, but it does not really cover it.
That being said I have been told by several doctors that I have severe non-typical crohns.

For me the pain on the right side is where it hits the open wounds in my TI, and my pain on the left is from the rapid dumping of my bowel.  When I have seen it on the xray thing that my bowel on the left side gets to the size of a football, but there is a scarred place about 3/4 of the way up on the football that acts like a bit of a shelf and even after do the first big dump there is always a bit stuck up there, and it is just a matter of movement to get that to tumble down.  Of course there is also the pain from the stool moving by so fast in a fairly undigested manner.

For me it help to have stretchy pants so I do not have the additional pain of a waist band cutting in there.

Blacky, I would not encourage you to just suck it up. That is not what I meant, you are in legitimate pain and you are bleeding, to me I think that sounds like a logical arguement for getting another opinion. I am not raising children (and I so do not know how you have the energy to do that), and in no way did I mean to discount your experience, and I would think most would say that blood in your stood is a very bad thing. In fact, I would absolutely encourage getting second and third opinions on that. I have to do most of my medical care thru the VA, so I am not sure if I would trust their opinion if I did not have too.
Trust your gut, and if your gut is saying something is wrong then advocate for yourself as much as you want.

Furthermore, I do not think there is anything wrong with getting pain management in my experience.  Especailly when it interferes with your sleep/quality of life.

I think pain and bleeding are very legitimate issues to ask your doctor about.

As i sit and read all these posts i have pain in my stomach...Seems like you have more problems then I do...Sorry for all that....Hope you get better soon...If i could get past the constant pain all day long the trips to the bathroom are not a big problem...At times the pain is very bad...Is this the case for you..Thanks..

MMMNAVY, I did not take your reply the wrong way, no worries. I really like my GI but he seems to be at a loss with me. I don't think he knows what to do. He has sent a letter to my surgeon, so it is the sitting in limbo that is so hard. And this crazy hemoglobin issue. I find that the most difficult to deal with.

Artist guy, I know all the pain is real, but honestly you start to think that maybe you are making it up LOL. I will get better we all know that. It just takes time. Wow you broke a lot of things, that is crazy LOL. Thanks for the replies.

Baylinerguy, that was me yesterday, gut pain, feels like someone has a fist inside opening and clenching, opening and clenching. My is intermittent though, so I am sorry that you have pain all day, that is tough. I hope you are some pain meds. I don't take any except for Extra strength Tylenol. I usually just breathe through the cramps, it feels like contractions to me.

How do you have your vitamin levels checked??? is it just a blood test?

Okay, well I have my b12 checked every 3 weeks, I take d, and starting oral iron again, but only 1 a day if I can tolerate it. My bowels have a mind of their own when i take oral iron.