Help

[4mom]

help

My mom has been sick since early April (almost 2 months). She has been in the hospital 3 times since May1st, each time she comes home (not home but to my house - she is very week) for about 2 days before I have to bring her back because she is so dehydrated from diarrhea and vomiting. She has been diagnosed with Crohn's, although they are not 100% sure. They say it could be ulcerative colitis. She got her first dose of Remicade on 5/25 and was discharged on 5/25. She can barely walk she is so weak and has lost 20lbs. making her 95 lbs. She had diarrhea all last night and today and has been extremely nauseous all day and not able to eat at all. She drank a little bit of juice/water. I think I will have to bring her back to the hospital tonight or in the morning. I'm so worried. Will this ever stop? Why don't they do anything else for her? She's been out of work for a month and I don't see her returning anytime soon. She may loose her job. Any input or advise would be greatly appreciated!
Thanks.
4mom

 

[David]

Wow, I'm so sorry your mom is having so much trouble. She's lucky to have someone as caring as you to help her out.

IBD can be difficult to get under control when there's a bad flare like your mom is having, especially if they don't yet have a firm diagnosis. Do they have her on any steroids? Hopefully the Remicade will kick in soon and she'll start to feel better. You can read up on Remicade in our Remicade forum in the mean time. We're here for you and your mom any time you need us.

Best of luck to you and her!

 

[LOSTnut]

WTF .. what kind of hospital is that??

They really let her out of the hospital with that weight, diarrhea and vomiting??

I would insist that they keep her and at a minimum put her on fluids to fight the dehydration and if necessary insert a PICC line to feed her and get her nutritional values up. She could even go home with the PICC line.

Could you ask them about that?

 

[4mom]

Thanks.
She had a pic line inserted to get her infusion on 5/25. They have a real hard time getting a decent size IV in her. She has very small veins that have been destroyed over the last month of IV's and blood draws. However, they took it out when she left on 5/27. I'm sure they will have to do another one next week for the next infusion. It's all so crazy. The Docs claim that THIS time they will take it slower to actually see what happens when she gets on solid food and it reaches the intestines and not just discharge her after she eats some solids for one day. In the mean time they are hoping the remicade will start to improve her condition or the flare will start to improve on it's own. Her crohn's or ulcerative colitis (still not sure what it is) is on the right side and some of the top of her large intestine. They did another CT scan to look at her small intestine and it looked fine. They mentioned doing a scope to make sure there is no crohn's in her stomach (this was done at the local hospital 1 month ago and they said the stomach looked fine). They are having the surgeons look at her in case they have to go there. I just wonder how long they are going to wait for improvement before wanting to do surgery. And at that point what state she will be in after not eating for well over a month. The nutritionist we saw today was very concerned about this and was going to try to talk to the GI team about her case. Nothing more I can do, but head back to the hospital tomorrow.....

 

[4mom]

oh, and yes she is on prednisone. Her primary care put her on a small taper mid april when pcp thought she was just having a small flare of the colitis she was diagnosed with 3 years ago (had been on mesalamine ever since) in the descending colon. Then when she ended up in the hospital on May 30th they put her on 80mg but it didn't help. The GI doc there blamed the small taper for ruining the effect of the large dose. ( BTW she also has osteoporosis!) She is now tapered down to 40mg a day.

 

[4mom]

oops I dont' think I mentioned that she is back in the hospital. Had to call the ambulance yesterday morning to bring her to the local hospital. They got her hydrated and on a good dose of zofran and then I drove her back to the major hospital that is dealing with her and they admitted her there.

 

[David]

Goodness. My thoughts are with you and your daughter. May she feel better soon!

 

[Tanachild]

IV steroids worked better for me compared to the oral which was a very slow process. I wish you and her the best of luck!

 

[4mom]

Update:
The GI doc gave my mother until monday to start responding to remicade - if she was not improving it was going to have to be surgery. Her symptoms started to improve on Sunday so they discharged her on Monday. She got her 2nd remicade infusion on Tuesday and Wednesday she seemed to be moving in the right direction (still very weak from all of this - but improving). Now today she was extremely tired, bloated and dizzy and now and then. She was supposed to start physical therapy at home (my home) but just didn't have any energy. She had been taking an antispasmodic med. (bental?) since last Thursday. It had really helped with the cramping she was having. She's going to try not taking it tomorrow. Just wondering if anyone has any thoughts on what's going on with her???

 

[LOSTnut]

Sorry, I cannot help with anything regarding what is generally going on with your mom and I have never been on Remicade and therefore don't know anything about how soon or well this medication is supposed to work.

However, I am still somewhat questioning the in and out of the hospital and think that she is released too early for her own good. Could you take her to another hospital in the area?

Physical therapy for what? She seems to be way too weak and sick for that, but that could just be me. And, even if it is necessary, they can do that in the hospital under stricter observation of ther weakness.

And, surgery??? I would insist that they strengthen her up before doing major surgery -- but that is just my personal opinion.

Hopefully, you will get some better answers from people on this forum. Good luck to you and your mom and I sure hope the Remicade will do its thing and kick in rather sooner than later.

:hug:

 

[4mom]

Thank you. Her Crohn's symptoms have improved, only 2-3 bm's a day now. The nausea no longer an issue either - she she has been eating and drinking pretty normally for almost a week. I think it's just that it took so long to get treatment, and it took a while for the treatment to start working that she's lost so much strength and endurance. She's 66, and was working full-time prior to this flare & wants to go back to work if she ever feels normal again. I just get really nervous when I see her doing worse one day than the day before. I start to think (as I'm sure she does too) that she's going to go down hill again and end up back in the hospital. She does seem better today than yesterday so that's good.

 

[Joleen23]

Hi , really happy things are improving for you , you guys sound like you've had a really tough time. My dads not very well (kidney failure) and i seem to spend a lot of time worrying about him too. I was in hospital myself for a month in total at the beginning of the year for a bad flare and was on IV steroids and AB's through a picc-line. It took a while but im starting to feel like my old self. I work full time and was off for about 6mths with my illness but i have been back at work full time for the last 2 mths. Somedays it's harder than others , i spend the first month out of hospital thinking that every little pain ment i was going back ( think i now have a phobia of hospitals)
I've not been too well the last couple of days (fever/nausea/D) but im taking oral Antibiotics and things seem to be improving.
Just hang on in there

 

[LOSTnut]

So glad to heat that things are finally getting better for your mom ... and you. It sure is unnerving when there doesn't seem to be any improvement.

Hopefully it will stay that way and she can gain her weight back and get strong again.