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Supafly · Guru

RE: Home!

RedHawk · Senior Member

3-4 times a day sounds great! Could be much worse, so that's good news. Hopefully things will get even better! The pred sucks.

I'm glad that you aren't bad enough to hop right to surgery. Would they take the whole thing, or half and see what happens? Or have they not thought that far ahead? Surgery is always a good thing to put off!

I'm still throwing up... LOL I'm like 18? weeks along. I ca't even keep track. It seems both like I've been pregnant for 15 months and that I am not pregnant at all. I still feel a bit disconnected. Still in shock. Which I should be over. I've seen the baby 3 times on U/S, I'm barffy, boobs are huge and sore...Without a doubt pregnant. I'm just a big dork. LOL. Just really in shock still. Seems like it can't be real. Never thought that it would happen...

I tried to friend you on FB. I hope that it was you that I wrote...LOL...

Get lots of rest. I think I'm done barfing for the night, so I'm off to bed. Take care.

Supafly · Guru

RedHawk wrote:

3-4 times a day sounds great! Could be much worse, so that's good news. Hopefully things will get even better! The pred sucks. I'm glad that you aren't bad enough to hop right to surgery. Would they take the whole thing, or half and see what happens? Or have they not thought that far ahead? Surgery is always a good thing to put off!

I'm still throwing up... LOL I'm like 18? weeks along. I ca't even keep track. It seems both like I've been pregnant for 15 months and that I am not pregnant at all. I still feel a bit disconnected. Still in shock. Which I should be over. I've seen the baby 3 times on U/S, I'm barffy, boobs are huge and sore...Without a doubt pregnant. I'm just a big dork. LOL. Just really in shock still. Seems like it can't be real. Never thought that it would happen...

I tried to friend you on FB. I hope that it was you that I wrote...LOL...

Get lots of rest. I think I'm done barfing for the night, so I'm off to bed. Take care.

Yes, it is definitely an improvement-and if it weren't for the blood, cramping and nausea that go along with it, I would be happy with 3-4 times a day! Really, I just would love to get the blood gone-it is always the most upsetting thing to me. And I hate being on pred-I hope I can get off of it as quickly as possible. Aside from the cosmetic side effects, which are bad enough, it just makes me feel like a different person.

My GI doesn't want to talk surgery yet, so we haven't had the discussion. I hope that once things settle down and I get back into remission (which I hopefully will), we can have the talk about it. I think it would be best to talk about it before there is a crisis. I would imagine they would take the whole thing, considering mine has already spread since I was intially diagnosed, but who knows. He has mentioned to me the possibility of crohns because one of my scopes showed inflammation at the ileum, so I think that would have to be ruled out before surgery as well. Lots to think about, but I know his goal is to keep me in remission with meds as long as possible and avoid surgery. I think he feels that there are so many advances happening that it is in my best interest to hang on to my colon for as long as I can! I waffle about it because I know I have a lot of risks from the meds too, but in the end, I am not ready for surgery-it scares me!

I am sorry you are still feeling so barfy!!! I hope that settles down and you can enjoy some of this pregnancy. It stinks to be feeling so badly. Are you going to be finding out what you are having? How is Andrew about it? Is he excited about being a big brother?

We are FB friends!!! It is definitely me-I am glad we can keep up that way now too.

RedHawk · Senior Member

We will find out what it is tomorrow. I have the big U/S at 9:30. Andrew wants a girl. He thinks that way we will have to buy girl toys and she will leave his boy toys alone. He doesn't understand he'll be 5 years older and they won't be "into" the same things. He has worked out all our "jobs". Steve will change the diapers, I will feed the baby, and he will chase the baby. We can all take turns burping as long as it doesn't spit up. If it does, he doesnt want to burp it. LOL.

Are you feeling stronger? Glad no one is thinking of surgery. It's lovely to go with no blood, cramps, ect... but, it is hard. I was going more than 25 times a day with blood, had whole colon involvement even on 60 mgs of pred. Who knows what it would be like now... There are so many new drugs that weren't around 15-20 years ago...

Supafly · Guru

RedHawk wrote:

We will find out what it is tomorrow. I have the big U/S at 9:30. Andrew wants a girl. He thinks that way we will have to buy girl toys and she will leave his boy toys alone. He doesn't understand he'll be 5 years older and they won't be "into" the same things. He has worked out all our "jobs". Steve will change the diapers, I will feed the baby, and he will chase the baby. We can all take turns burping as long as it doesn't spit up. If it does, he doesnt want to burp it. LOL.

Are you feeling stronger? Glad no one is thinking of surgery. It's lovely to go with no blood, cramps, ect... but, it is hard. I was going more than 25 times a day with blood, had whole colon involvement even on 60 mgs of pred. Who knows what it would be like now... There are so many new drugs that weren't around 15-20 years ago...

Yipee!!!! I can't wait to hear!!! Andrew sounds so cute-he is obviously going to be a great big brother. How sweet is he, figuring out what everyone is going to be doing. I will be interested to hear his name choices-I have a feeling he will have opinions about that too, if he hasn't already thrown out some suggestions!

I am feeling stronger-little by little. I caught a cold from Bill and that made me feel worse for a few days, UC wise (getting sick usually does), so I was a bit nervous about that, but my cold is starting to pass, and the UC things are settling down too. I am down to 2-4 times a day (yesterday only once though!). I am still having bleeding, but not as much. I think the Remicade is working, just slower than the Humira did. Hopefully as it builds up in my system, the bleeding will get gone. I am not sure he will let me start tapering the pred until the bleeding is stopped, so I am anxious about that. I hope the Remicade will get me into a solid remission for a while. It might not ever get me into remission, or it might end working for years-who knows. There are a lot of people who think surgery is the better option because 1) you are done with it essentially and 2) you don't have to worry about the side effects from these meds, which they really don't know yet-I could be setting myself up for major problems in the future. But I don't know. Being in remission and leading a normal life right now is great. And while I know that having surgery is definitely better than living life in a flare, when I read about the best case scenarios, it still sounds worse than being in remission with meds, kwim? I mean, the Humira kept me in remission for over 18 months-and it was once or twice a day-completely normal, able to eat, drink and do whatever I wanted. If I can have that, that is what I want.

But then I think about the fact that the meds will eventually stop working and I will be back to where I am now, and I wonder if I should consider surgery. IDK. But I think I am just not ready to do it yet. Like I said, once things settle down, I want to talk to him and get an honest feel for what my life would look like after surgery, if that is the road I end up taking. For now, I am grateful that I am doing better-and I am really hoping that the remicade works well enough in the next few weeks here that when I see him again at the beginning of April, he will green light the prednisone taper.

Ok, I am rambling now! Sorry-but I am glad to hear your input about it-it makes me feel better about staying on the med route for now.

Let us know tomorrow-I am very anxious to find out what you are having!!!

RedHawk · Senior Member

I can't even think about names...I have the girls name that I picked out when I was pregnant with Andrew. Lauren Elizabeth Rose... I've always liked Elizabeth, but when I was pregnant with Andrew, Lauren really caught my attn. Who knows though? Andrew was supposed to be Alexander. But it just didn't "feel" right. I wrote it out, I called him different things. On Day 4 (my last) of the hospital stay, they were like, ok, we need to write something down for him...

I told him yesterday, even if it is a girl, she could like trucks, planes and stuff that he has. That made him lean towards it may be an alien again.

I pulled out the "You get what you get, and you don't throw a fit".

He has been very sure since he found out I was pregnant that it will be a brother, sister or alien. One of those three.

The unkown sucks about meds. You have to be on them for a while to see if the work, taper off, if they don't, then start something else all over again. Then, it's like, you've "wasted" all that time being sick with something that didn't work. Or at least that's how I felt. Hopefully, they'll find your right combo soon. Sounds like things are getting better.