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Wife Dx'd with UC. Hospitalized. Now at Home doing poorly. Help!

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Posted 12/9/2011 3:38 PM (GMT 0)
Hi folks. I used to freaquent here for the Sleep apnea and anxiety/depression forums, so i know it's a kind and welcoming place when i find myself or those I love are in pain.

I come today because my wife fell ill 3 weeks ago and was admitted to the hospital 2 weeks ago from severe dehydration, fatigue, bloody diarrhea, vomiting, nauseau, etc. After several blood tests, MRI, CT Scan of the abdomen and a colonoscopy they discovered that she has IBD. Whether it's CD or UC is still undetermined as they were unable to do a full colonoscopy due to the inflammation.

Once she was on IV Steroids (Solumedrol?), pain meds and had been on IV Fluids for several days she started to look and feel a LOT better. Was even eating sandwhiches and chips, having soda, etc (Looking back, i'm not sure why the Docs had her on a reg diet...unbeleivable). After a week in the hospital and things looking positive, she was released after proving she could be without IV Fluids and on Oral Steroids (Prednisone) for 24 hours.

Once home, i made her dinner, potato gnocci with bolognese (She had something similar at the hospital - again, looking back it was a very bad idea). Shortly after, her stomach started feeling a bit off. Unconcerned we went to bed after taking her prednisone and pepcid, but woke up several times through the night in a full sweat (Prednisone). IN the AM, she vomited and had bloody stool, and had returned to the state of fatigue and desparation she was in the day we were admitted to the hospital, and her stress, anxiety, frustration was back at square one.

She's been able to drink vitamin water (Revive has potassium) and crackers, rice, etc in small amounts but every time it looks like she's turning a corner she steps back again. She's had her OR friend come to give her IV Fluids and her veins were not accepting. I fed her broiled chicken and rice and she ate it, but had a very "full" feeling which made her nauseous and she ended up vomiting last night again.

This AM she doesnt feel like eating or drinking, just sleeping. I gave her some ativan (Rx'd by Dr) and Prilosec, and off she went.

I've been in communications with the doctor throughout the week and she has said if she cant eat, drink and take in nutrients she needs to come back in, extending me one more day each time i tell her things are looking a bit better. Truth be told, i'm not sure they are.

On top of everything, we have a 4 month old baby who is now being switched over to formula since she's not producing anymore and our supply is down to the last day. Baby isnt taking to it well and not sleeping, adding to this nice stew of anxiety and frustration we have goin on here.

When she wakes, i'm going to try to give her a Carnation Instant Breakfast (Lactose Free) and if she cant drink it, or keep her down i feel i have no other options but to have her readmitted for TPN (What the dr said).

Is there ANY help or suggestions you can offer us to help her get hydrated and calories into her so that she can get better at home? We have no short term disability and are not making much income w/ her out of work and me staying home to care for the baby and her.

Thank you for reading and any and al thoughts, prayers and info you can provide.

God Bless You

Posted 12/9/2011 3:53 PM (GMT 0)
Oh my, I am so sorry about all that you have been through. As if it wasn't stressful enough having a new baby. I'm not sure what to tell you as far as the UC component....sounds a bit out of my league with how sick your wife is. I did want to offer you hugs (I know how much help is that?) and bump your post. Hopefully some UC veterans will be able to help.

As far as the baby, is there any relative or someone who can deal w/ the baby until you are out of crisis mode?
Posted 12/9/2011 3:53 PM (GMT 0)
I think you need to get her back to the hospital and on TPN. That is the fastest way for her to recover. What is her prednisone dose? What is the plan for another attempt at a scope?

I am so sorry that you are going through this. I got diagnosed after the birth of my first child and there are other women here who had their first IBD flare following pregnancy. It seems common enough but still so devastating, especially for you both since she was nursing and now that has been disrupted.

Clear liquids may be the only calories she can tolerate right now. I don't think Carnation will be a clear liquid, but I suppose you can try it. She needs more calories than clear liquid can provide anyway, so I'm back to TPN. Hopefully just a couple more days will get her over the hump and the prednisone will have resolved more of the inflammation.

Baby will be fine. 4 month olds aren't great sleepers in general anyway. Do you have any family nearby who can step in to give you some relief???
Posted 12/9/2011 3:58 PM (GMT 0)
Hello and sorry to hear...
When I started to get ill, it was not just the UC part of things apparently. There was an infection in my stomach that caused me to get sick when I ate anything and that uncomfortable "full" feeling when I would only eat a bite or 2.. I started drinking ensure for weight gain to try to help. But ultimately, my gastro looked over my blood work results and realized there was an infection and I was put on antibiotics and that did help with the nausea and full feeling to where I could eat again. The Lialda for the UC did settle the blood in the stool and most all the symptoms. I also take aloe vera juice and l-glutamine powder to help healing within the intestines and colon. The anxiety alone can make the symptoms worse so trying to take one day at a time and add in some different supplements could help... maybe talking to her doctor about those things for some input would be mind assuring. Also, my diet changed drastically as well... no fast food or processed foods and cut out veggies or anything else that the body had to work to digest... I stick to a chicken and pastas or rice mainly diet and that seemed to help me. If she is still vomiting alot, you could try cooking rice in boiling water and have her sip cups of the rice water... that soothed alot of the nausea and some of the dehydration for me when I was at my worst..
Best Wishes and prayers!!
Posted 12/9/2011 4:18 PM (GMT 0)
That's a tough situation to be in, I'm sorry she's so sick. :(

When I was flaring rather badly, I was pretty nauseous all the time but I never vomited. I'm not 100% but your wife's sounds more like Crohns to me because of that. Once you know for certain, though, that'll make things a bit easier as far as treatment...

For me, foods I could tolerate pretty well were chicken soup, applesauce, eggs (some people have problems with these), avocados, and banana smoothies. I basically lived off those foods for over a month. Avocados in particular were my favorite... and they are high fat/calorie. Smoothies were probably my second favorite and I'd add 2 tablespoons of coconut oil to give it more calories (coconut oil is very good for you, too!). Water and peppermint tea with honey was all I drank when sick. If your wife likes tea, she might want to try peppermint sweetened with honey - very good for spasms and it's yummy, too! For me, gatorade or any of those sports drinks makes me feel worse, probably because of the extremely high sugar content.

Anyway, I really hope your wife feels better soon! Please keep us updated on the situation!
Posted 12/9/2011 4:42 PM (GMT 0)
Thank you SO much for the thoughtful and insightful replies. She's still sleeping (and so is baby, thank goodness), so i'll try to reply to each:

Hateuc - Thanks for the hugs, the more the merrier as you know we can certainly use them, even the digital variety. I have friends who've offered to care for her but they have newborns, jobs, etc themselves. Her mother is near but she is a teacher and i dont exactly trust she'll get the best care with her. I know i could have her watched for a day or two if it came down to it, and i'll reach out if it comes to that. Thank you :)

Kaz - that's what the doc suggests and that's what i'm feeling as well. I just know if we end up back there her mental state will drweqecline rapidly. But, if she can't eat or drink and keep it down, then she wont heal and could be in ever further danger than she's in now. I'm very aware of the gravitas of the situation and today is one last effort to get her to buck up. She's on 20mg of pred 2x/day (so 40/day). Her doc said if the bloody stools continued she would be upped to 60mg/day. She sweats alot at night but we know that's just the pred and will go awaweqruiopqewry when they start to taper her off. Bloody stools have slowed....sometimes not bloody at all, but the discomfort and diarrhea continue. She's 34 and she had a 2 week long bout with diarrhea and exhaustion last year at the exact same time, only she was 2.5 months pregnant. Looking back, it's clear that stress was cause of both situations as this time of year can do that to a person. Especially when you're carrying, not out of your 1st trimester, boy/girl?, finances, etc, etc. We had a bad year with deaths (her father, both our grandmothers, her bulldog of 7 years) so, it's no wonder she's at where she is at again. At least we know what it is now, which is 1/2 the battle. Again, hopefully she can take the carnation breakfast. It's a bit thick and chocolatey but tastes good to me. I cant think of any other calorie rich liquids.

Living Again and Wing Zero - thanks for the tips. Hope we can get to that point soon! Im the cook of the house and usually decide on dinners. TOnights menu has 2 options. Carnation or TPN.

I'll let you know what she decides to go with. Thanks everyone so kindly for your help. Praying she gets well to take her pred and food.

peace love and light.

Post Edited (phorts) : 12/9/2011 9:53:19 AM (GMT-7)

Posted 12/9/2011 5:15 PM (GMT 0)
Sorry she is going through such a rough time. Was she given any other meds besides the pred? Rectal meds at the very least would be very benificial I would think-- I use Rowasa enemas nightly when flaring and they are what really helps with the bleeding. A flare can take awhile to get under control and I don't know that pred alone could do it. I don't know that the Carnation stuff is the best thing for her if she is feeling pukey. Milky stuff would make me vomit when I had morning sickness...luckily I haven't had vomitting with my UC. Clear liquids and a very bland diet rice, chicken (not fried), soup, applesauce, crackers. However, if she can't get the IV at home because they are unable to get to a vein then she is too dehydrated and needs to be in the hospital.

I hope someone can help with the baby.

Keep us posted.
Posted 12/9/2011 7:00 PM (GMT 0)
SHe's on Prednisone for the Inflammation, Prilosec OTC to block acid since they said she is a high risk of Ulcers (i dont like this though since you need acid to digest food), Ativan for stress/anxiety and to help sleep, Zofran for nausea and Purcaset for Pain.

That's it. she's up now, showered, and trying to drink a Carnation Instant Breakfast (Lactose Free) Chocolate. It's a little thick but she doesnt seem to mind it. What the problem has been is the feeling of it not leaving her stomach. Delayed gastric emptying? Is this due to the prilosec? God i hate that stuff and all antacids.

Does anyone else have this problem or know what to do to help it, this is truly what's between her staying and getting nutrition on her own, and going in for TPN.
Posted 12/9/2011 7:02 PM (GMT 0)
Oh Lord, tough things and tough times.

You have already got some good advice.
Ask the GI for Rx of Bentyl and have multiple refills. This will stop her diarrhea and will be able to hold something that she eats and drinks. For food, how about giving her risotto or oats or some non-spicy soups? Something light. Frankly, in my case, I am in flare or in remission, I eat everything (with Bentyl) in moderation but if she is reacting to something, make a note of it. (She is not able to do that at this moment)

With Prednisone, side effects will follow and everyone has different side effects, like mood swings, moon face, weight gain etc. So keep it cool if she acts weird. (My wife really takes all my crap when I am on Pred, this year has been worse) Do you know how Pred is Rxed? i.e. how long 40mg and how to taper? I think 40 may not be enough.

You could supplement her food with probiotics like VSL#3, if your insurance covers then ask your GI for Rx of VSL#3DS. If she doesn't mind dairy, kefir is also a good idea. Whole Foods has a quite good variety (but expensive) Trader Joes has only 3 varieties but cheaper. Cut coffee and tea (except Green tea)

The doc should also ask her to take B12 supplements. Talk to GI about it. Since her colon is inflamed B12 absorption will be reduced and you need to supplement B12. (My preference is for Methyl B12 than Cyano B12, because methyl form helps detoxification)

For the baby, what can I say, find the best possible care. Hard to give any suggestions but if you can take some days of, thats the best.

Good Luck mate. This time shall pass.
Posted 12/9/2011 7:05 PM (GMT 0)

phorts said...
What the problem has been is the feeling of it not leaving her stomach.


That could be Percocet.

Does she have cramps near naval area? If yes, its referred pain due to colon inflammation. She needs Bentyl and Acetaminophen.
Posted 12/9/2011 7:40 PM (GMT 0)
Delta, Predinisone is prescribed 20mg 2x/day for 2 weeks and then taper off after that (she's to see a GI doc at that time to decide if/how to taper). Doc that has been in charge of her case said that if she continues to have bloody diarhea that she would up it to 60mg/day, but that the diarehea is normal and will take some time to calm down. She doest have the energy to have mood swings right now, but i'm cool if/when she does...wouldnt be anything new ;) heh.

I take VSL3 daily since i had a Nissen procedure done 3 years ago, and was diagnosed w/ Lyme disease last year and was on a heavy course of Abx, that and i think it's just good to do. She was taking one at the hospital and then again when she came home, but she's leary of them now since she thinks it's possible it was the cause of her relapse when she came home, as irrational as that sounds.

Doc mentioned nothing about B12. However, as soon as this is under control, i'm going to have her see a naturapath. The care that she is getting seems almost barbaric. THere has to be a more natural, gentle way to heal.

deltaforce - the pain she is having when she feels like/right before vomiting is in her mid left quadrant in her abdomen, near where her stomach is. Only other pain she has is gut spasms.

The doctor made no mention of bentyl or acetametaphin. Ugh.

Shes got 1/2 the Carnation Breakfast down.... let's see if it stays.
Posted 12/9/2011 8:04 PM (GMT 0)
I don't know how naturopath is going to solve her problem but if you believe in it, go for it. I have tried and tested many of these 'therapies' but none worked in my hand so I am saving that money and taking regular meds that work. Yes, it is barbaric but its her first time and she didn't know how to deal with it. Everyone here has been through this, I really mean it, everyone. We all learned over the period of time how to deal with it. She will learn too.

Next time, you see the doc, ask her to write Rx for Bentyl and if she asks why, tell her to control your wife's oval office trips. Bentyl has been a blessing for me. I can leave my home when I am in flare. It was impossible when I was in Sweden as Bentyl is not approved there.
The way you describe her location of pain, I doubt either Bentyl or Percocet (Oxycodone+Acetaminophen) will work. How about going on liquid diet for a day and see if that feeling goes away?
Posted 12/9/2011 8:17 PM (GMT 0)
Diarrhea diet, bananas, rice (white), applesauce, and toast- All the clear liquids and jello she wants.
Broths and consume' s are a great source of calories and easy on the tummy-

Carlie
Posted 12/9/2011 9:53 PM (GMT 0)
I am currently on an acid reducer very similar to your wife and I've found that I've had to greatly reduce the amount of food I eat at a time, even liquid for that matter. If I eat or drink too quickly I feel unwell and have that full stomach feeling like I am going to vomit. So make sure she's taking her time with both, I have found that it's gotten better since I've been feeling better.

Even though she was eating well before I'd be sticking to easier foods since she's been having troubles like rice and jello. Also not having meals and having many snacks all the time instead, snacks just being portioned food stuffs so the body isn't dealing with big quantities. One of my biggest problems is feeling better and eating a bunch then feeling or being sick because of it and it does put you back.


Good luck!
Posted 12/9/2011 10:59 PM (GMT 0)
So sorry to hear your wife is so sick! I know it may seem horrible right now to go back into the hospital but TPN really does help and after a few days in the hospital you can usually go home with it.

I have been on TPN before when my flare was out of control and past the point of being able to function. I spent 5 days in the hospital with it and then they got me set up with a portable pump and I stayed on it at home for another 3 weeks. My veins were also shot, they put in a Picc line in my chest and then I was able to do the TPN really easy at home.

TPN is the only time that I have left the hospital and still felt well once home. I think because you are back to getting enough calories and all the vitamins and minerals you need, all while bypassing the digestive tract so it can heal. Mine was setup so I would do it overnight. I would start it at 8 pm and it was set to finish in 12 hrs so at 8 the next morning I could unhook it and not be hindered by it during the day.
Posted 12/10/2011 1:10 AM (GMT 0)
I went through a very hard time when I was first diagnosed and have been on nearly every medication possible and over time I have found what works best for me and so will she. I only eat organic food, no carbonated drinks, caffeine, no processed anything. I eat pretty basic, usually a meat and veggies of some sort when tolerable. Little to no breads.

It would be a good idea to get her vitamin D checked because my disease is so much calmer when I take high dose vitamin D 5000 per day because I tend to get very deficient. I also supplement with fish oil, vit B 12, and ultimate critical care probiotic from Whole foods. My current medications include Lialda and Rowasa enemas and because the above supplements are working, I no longer have to take Cimzia. One more tip, when I start to flare, I only take in clear fluids for 24-48 hours and then slowly introduce regular organic food.

I hope she is feeling better soon!
Posted 12/10/2011 2:55 AM (GMT 0)
     I didn't read all the responces but I wanted to add ...make sure she takes a calcium supplement.  My GI never recommended I take calcium when on prednisone and I am suffering with osteoporosis today because of it.  Prednisone has some nasty side effects and the sooner she will be able to ween off it, the better.  My GI called it the best/worse drug. 

      My friend is having wonderful results on the VSL#3.  Her UC seems to be under control.

     You'll find that everyone who suffers from this disease responds differently to meds.  Hopefully, your wife will start to feel better soon and the doctor will be able to diagnose her accurately.

     When I suffered with UP (proctitis), I found that baked salmon was very easy on the gut and I ate it at least three times a week.  Eating a low-fiber diet was best for me.

      I'll keep your family in my prayers.  You are going through a very tough time sad .

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