New to this all.... and 18 weeks pregnant

[jjmurph]

Hi everyone. I am so glad to find a place like this as I am very new to this whole thing.
Here is my story...
I was about 10 weeks pregnant when I started to get sick, I was unable to eat and even had times when I was unable to keep fluids down. I went to my OBGYN multiple times, and had to spend a few afternoons in the hospital getting IV fluids. The doctors all thought I had Hyperemesis, which is just a technical word for seriously bad morning sickness. We kept waiting for it to taper off as I ended the first trimester. Unfortunately I took a major turn for the worse, and after losing almost 30 pounds I was admitted to the hospital, 3 weeks ago today.
Once I was in the hospital someone finally paid attention to the fact that I had chronic diahrehha(SP) and they ran some tests and scheduled a colonoscopy. I was pretty much out of it for the 1st week of hospitilization, I dont remember anything really.
After the tests, they diagnosed me with Crohns. I was given large dosages of antibiotics for a few days. Which caused me to develop thrush in my throat, which is terrible..
I also stuck to liquid diet for the first week or so.
I was in the hospital for 2 weeks, getting IV steroids and pain killers.
I am home now, taking a large dose of prednisone, something for cramps, immodium, and pain killers. Due to my pregnancy they can not aggresivly treat the Crohns.
I am eating a lot better, still learning what is best or easiest to deal with.
I am extremely weak and tired all the time as well.
Will this get better?
I have a one year old who is having to stay with my mom right now because I just dont have the strength to take care of him.
Im pretty much miserable and looking for some advice and support. My family is fantastic, my husband is dealing with all of this so well.
I am just fed up with having to get everything done for me right now.
Cant wait to talk to others that have been through this or are going through this right now.
I dont really know how to deal with all of this.....

Thanks for listening!!!!!

 

[mikeyarmo]

Welcome jjmurph,

I am sorry to hear that this disease sprung on you during pregnancy. I am sure there is enough to worry about without having to worry about your health and Dr. appointments!

Prednisone is a pretty aggressive drug, so it hopefully can do some good for you. I heavily recommend you keep a food journal and eliminate any foods you can determine are really causing you trouble (based on recording what you eat each day and how you feel after each meal... this will allow you to see a pattern over time what foods can cause more pain than others). It is essential though that you continue to eat and eat a lot as you need to provide you and your baby enough vitamins and nutrients... so that is why you need to determine what foods you can eat. Many people decrease how much they eat to avoid pain, but that is not a real solution (especially for you).

Good luck and let us know if you have any more questions.

 

[jed]

hey JJ, welcoe to the forums!

i cant help you with the pregnancy thing (due to lack of a uterus), but may i suggest asking your doctor about nilstat for the oral thrush.... its tastes magnificent! the docs took my bottle away from me when i was in hospital because i liked it to much

this disease can really suck sometimes, but after your pregancy you'll have a whole plethora of drugs you'll be able to play with. one of them will hopefully put you into a decent remission.

best wishes!

 

[AIjen]

Hi there! Glad you found us, sorry you have to be here. As if being pregnant and the mother of a 1-year-old wasn't enough, huh? I hope everything starts to go uphill for you now - or at least level off. Good luck with your pregnancy. I'll add you to my growing list of prayer people!

 

[jjmurph]

Hi there! Glad you found us, sorry you have to be here. As if being pregnant and the mother of a 1-year-old wasn't enough, huh? I hope everything starts to go uphill for you now - or at least level off. Good luck with your pregnancy. I'll add you to my growing list of prayer people!

Thanks so much!!! I appericiate everyones kind words. And its nice to know I can come here and ask questions etc. Since I am so new to all of this. I know everyone is different as far as what they can and cant eat... I am doing good with milk for instance.... But since I am pregnant the doctors are telling me to eat what I can, as much as I can really. I have not tried any of the ensures, etc because I have a thing about the thickness. Anyone have any good ideas for high calorie food that would be gentle or that I can try??? Thanks again everyone!!!

 

[katiesue1506]

Milk shakes are high calorie... but also thick.

Poptarts, cinnamon rolls, pizza rolls, orange chicken with fried rice.... just thinking out loud here. Most of the high calorie stuff doesn't sit well on the tummy.

 

[kello82]

does the thickness bother you because its a drink? or do you dislike pudding and stuff too, and like katiesue said milkshakes?

i make milkshakes out of boost and ice cream and oreos to try and get my weight going. theyre def high calorie and delicious

 

[MINI Cooper]

Welcome!
Sorry to hear of your diagnosis. But you'll find lots of help here!
The Ensures don't work for me, they make me throw up. Upset the tummy big time.
I hear slim fast works good for in between meals if you also cannot tolerate the
thick stuff like me.

 

[jjmurph]

I am feeling a little better today. I went to my OB this morning, and the baby is thriving, which always makes me feel good regardless of how i am physically feeling. I still feel bad. I know my doctor keeps telling me that its going to take time, I just wonder how long I am going to feel so weak and sick I guess.
I just dont like the thickness of things like ensure. I was curious as to the thickness of those slim fasts, I have not tried milkshakes yet, but normally I love them! I still have thrush, which makes it difficult for me to really taste anything right now which makes it even harder. I had the niactacin(SP) in the hospital too. I dont have any left and need to have my doctor call me in some more because it helps too.

 

[RHOV]

I thought Ensure was kind of gritty. I didn't like it! Maybe you could find the most nutritious and calorie-dense foods that you like and just continually snack throughout the day. Do you like peanut butter? That's what I ate to gain weight.

 

[kromom1]

You said you can tolerate mild okay, so how about Carnation Instant Breakfast? It's kind of like drinking chocolate milk, but much more nutritious. Good luck with your pregnancy and your Crohn's.

Lisa

 

[My Butt Hurts]

DOH! Lisa beat me to the Carnation Instant Breakfast. That's what I have every morning for breakfast. When I was trying to gain weight I would put about 1/2 cup of that flavored coffee creamer in it. SOO yummy!! It's not think like the Ensure at all. Boost is really thick, and slimey too - stay away from it. I also drank slim-fast. The cappuciino flavor is really good. If that's too thick, you could dilute it a bit with milk.
Anyways - welcome to the forum, and I'm so glad for you that the baby is thriving with all that you are going through. It's normal to be tired after losing all of that weight. You are very lucky that your family is so supportive.
Good luck - feel better.

 

[Sparky]

oh, you poor thing! Pregnancy's rough enough without CD to deal with on top of it. You know that unborn babies are little parasites - yours will be fine honey, it'll take what it needs leaving you feeling all tired and weak.

As for what you can eat - I'd echo what others have said about keeping a diary - sometimes it's something really innocuous that causes a problem? Not sure about the Ensure type drinks, they all make me heave. What about something like porridge - I eat lots of that, full fat milk and some sugar to bump up the calories? It's soft and squishy enough not to cause me a problem, but not so slimy that it makes me feel queasy?

Feel better soon

 

[jjmurph]

I was readmitted to the hospital on Monday after I fell and couldnt get up.... I am on TPN now and basically just resting up. They added Assecal (SP?) and I am getting my other meds through the IVs. They have said I am here, indefinately...meaning Merry Christmas at the Hospital..... but thats okay if I feel better. I am feeling so much better already~ Baby is fine... we had an ultrasound yesterday and he is doing fantastic! Just wanted to give a quick update! Thanks for all the support!

 

[MINI Cooper]

Glad you and the baby are doing good!
Yes, feeling better is the most important thing for the both of you!
I am also taking Asacol, and have been on TPN before, myself.
take it easy and keep us posted!

 

[jjmurph]

Im still around and doing SO much better!!

Hello all~
Well its been a pretty rough road.... I was re-admitted to the hospital the last time I posted. I spent a month in the hospital. Including a week in the ICU after getting an intestinal obstruction. That was the WORST! I was doing pretty good and then woke up the sunday before New Years in excrutiating(sp?) pain and bleeding terribly. We had a surgeon consult after a cat scan and he literally came in my ICU room and told me "you will probably have to have surgery and lose the baby" apparently he went on to tell me that he thought I was probably going to have to have my colon removed blah blah blah but all I could hear was I was going to lose the baby, it was awful! He said he would give me 12 hours to make an improvement and then decide about surgery. Well the next morning I had another cat scan and thanks to many prayers and thoughts (as far as Im concerned) I had made enough improvement that I didnt have to have surgery!!!
I was able to transfer out of ICU the next day! It was amazing!!
My GI and OBGYN consulted with an infamous high risk pregnancy doctor as well as the Crohns doctor at UAB and decided to go ahead and try Remicade. I was like a completely different person a week later!!
I was released from the hospital on January 13 after my second Remicade treatment. Since then I have been tapering off the Predisone, this week is my first week completely off!!! I am still on Asacol and still having to take a couple of pain killers a day, is this normal?
I was diagnosed with gestational diabetes too, probably because of the predisone :-( SO I am doing insulin shots daily as well.
I am 32 weeks pregnant as of today! The baby is still looking great~ measuring fine and seems to be doing very welll! I have been able to gain about a pound a week as well. I am still about 10 pounds lighter than I was when I found out I was pregnant though! Fortunately all my doctors see no reason why I wont make it to 40 weeks~ and I am generally feeling GREAT!! I am still extremely fatigued and as I said before, still having to take pain killers~
But my 15 month old son and my 7year old step daughter are finally able to be home with me full time, that was the hardest part of all of this, not being able to take care of my babies!!! But I can haul my 15 month old all around town now, and was unable to even pick him up when I got out of the hospital (hes a chunk at 30 lbs)!
I am eating very well and have had no adverse side effects to any particular food as of yet, I have been avoiding anything deep fried, fast food, salads, and nuts, but eating pretty much everything else.
I will try to post again soon so I can keep everyone updated!
Oh heres a little funny.... as so many of us know the predisone made my face like a MOON and was so puffy and swollen (it is finally going down now) But in all my ultrasounds since I have been on the steroids, the baby's face was obviously puffy as well, you should have seen this boys cheeks!!! My GI doctor said he was definitely having the same Moon face side effect!!! Poor baby boy..... he is truly my little miracle to have made it this far!!!

 

[teeny5]

That is great news! Glad to hear you are doing so much better!

 

[mommy1st]

I'm so glad you're feeling better, only a few more weeks to go. Good luck and keep us posted when you have time.

 

[My Butt Hurts]

On Remi and off of pred - Yay! That sounds great and you are so close to seeing your new babe too!
Glad to hear you avoided the surgery!
Awww - poor baby moonface. Did you get to keep a pic from it?

 

[mRae85]

Hi, glad to see things are going so well now!

I wasn't here when you first came here I guess but your story really got to me, I couldn't imagine going through all of that preg. I'm really happy to know that there haven't been any bad side effects, I have often wondered to myself if I could have kids or if it would be safe to try due to the drugs they have you on for Crohns. Glad to know that there is still hope , you have a really positive attitude with it all, and that is doing alot for the entire situation I am sure. Can't waite to hear more about you and the little baby. Same question as MBH : did you get a picture of the little baby moon face, I bet that was tooo cute

 

[ladyB]

congrats on the pregnancy going well.
I am so happy to hear you are doing well. You'll need allthe extra energy for the new baby...lol

 

[jjmurph]

Hi, glad to see things are going so well now!

I wasn't here when you first came here I guess but your story really got to me, I couldn't imagine going through all of that preg. I'm really happy to know that there haven't been any bad side effects, I have often wondered to myself if I could have kids or if it would be safe to try due to the drugs they have you on for Crohns. Glad to know that there is still hope , you have a really positive attitude with it all, and that is doing alot for the entire situation I am sure. Can't waite to hear more about you and the little baby. Same question as MBH : did you get a picture of the little baby moon face, I bet that was tooo cute

Im glad I can give you some hope. I definitely try to keep a positive attitude, I think it really makes a difference! I did get lots of ultrasound pics of little baby moon face. I have actually been getting ultrasounds about every month and now every two weeks just to ensure that little man is growing okay etc. So I have a stack of pics for him to make an album, since I know he will live hearing about what a rough time I had during his pregnancy!
I will keep you updated!! 8 weeks to go!!!!!!!!!