my Crohns has spread-needing my Crohnnies back:)

Hi Gang,
I've been taking a break from posting here after all of the controversy, but I'm really so sad and needing some support. I had severe abdominal pain that lasted for 9 hours yesterday and I finally gave in and went to the ER. My GI hired a new receptionist who is an idiot, and she wouldn't page the doctor for me. ( I talked to my GI today and he will deal with her)
I was put on IV's and pain meds and it helped a lot. My CT scan showed worsening of the Crohn's. I originally had a small amount of inflammation in my terminal ileum and now the reports says:
"Moderate long segments of wall thickening of the distal ileum and terminal ileum consistent with Crohn's disease. This is significantly worse than was seen on the prior study. There is some moderate stricturing at the proximal portion of this loop of ileum with some proximal dilitation, but no significant obstruction."

So the ER doc, who was kind of a pompous jerk said he spoke to my doc's new partner (whom I never met), and that he wanted to admit me for IV steroids and pain meds. I said I was uncomfortable not being able to discuss the plan with either my GI (who I love and trust) or at least the partner. So the Er doc says, "clearly you are in denial about the seriousness of your illness, so then why don't you just go home." I was exhausted at that point after being in the ER for 7 hours, so we compromised and he gave me a Salumedrol shot and I went home.

So I spoke with my very apologetic GI today. He is putting me on a tapering Prednisone dose, starting at 40mg, and keeping me on a full liquid diet, and I will see him on Monday in the office to come up with a long term plan. He also told me if my pain returns, I will need to be admitted to the hospital for IV steroids. So here's all my emotional worries:

1. I'm supposed to go out of town to Vegas from Dec.22-28 with my family for Christmas. I will be staying at my sister's house, so I guess if I'm still on the liquid diet, I can manage. I'm trying to wait until Monday to make a decision. My husband and kids are insisting that if I stay home, they won't go either. I would feel terrible to ruin Christmas for everybody. I'm Jewish, but my hubby is Christian, and Christmas is a big deal for him and the kids. Honestly, I wouldn't mind just staying home alone, but they won't hear of it.

2. My doc was pretty unclear about what a full liquid diet really is. I looked it up and it looks like cream of rice or cream of wheat cereal is ok. Any suggestions?

3. I'm sad, and anxious about what my future holds. clearly the Pentasa wasn't keeping the Crohn's from spreading. I wonder if it's time for the immunosuppressants.

4. While I was in the hospital, I REALLY missed you guys. I was trying to support Nanners, and leave the forum, but I don't think I can cope with this alone. I'm just really weak, sick, sad and scared and overwhelmed right now,

Thanks for listening!

Aww sweetie I am so sorry to hear things have spread.  Never leave here for me, I am just one person here and I am doing better spirit wise myself, so have been posting here and there.  But there are wonderful people here who will gladly support you too!

I think the Pred should get you feeling better and hopefully you will be able to go on your trip with your family.  I will definetely keep you in my prayers that this works for you.  Also it sounds as if he put you on a full liquid diet, so with that you can also eat creamy soups, smoothies, cream of rice, ice cream (if you can tolerate dairy) or italian ice (if dairy is out) and jello.  Thats what I was eating when they had me on a full liquid diet in the hospital.

Sending you much love and support and hope that the Pred works well for you and gets you feeling better enough to go on your trip.  Oh and maybe its time to try something like 6mp or Imuran.  Those are good meds and will go onto 6mp too if things get any worse for me.  Big hugs my friend! xoxo

I had diarrhea for a week following my CT this summer. It wasn't painful at all, just annoying. I hope that's what's giving you the runs. And maybe the CT drink is still making you nauseated? I hate that chicken broth made you icky feeling.

When I make smoothies I just use lactaid milk, yogurt and bananas. I'll add chocolate powder or use vanilla yogurt if I'm feeling adventurous. Sometime I toss in a splash of orange juice.

Am I allowed to put fruit in it? I just drank half a glass of carnation instant breakfast, ice and soy milk. That seemed ok, but I'll wait and see. I still have clients scheduled for work tomorrow. I'm hoping to be well enough to go. I hate all of my worrying....I'm driving myself crazy!

Sorry to hear this..
<<HUG>>
Get better quick!
I remember the year I had been dx'ed with UC (before the CD dx) I spent an XMas both alone, & sick. Remember you do have your husband with you, ok? It will get better!

Sincerely,
Matthew

Ouch; sounds fairly similar to me. I have had (still have?) a stricture which caused pain. If anything will kick it to the kerb, it'll be Pred: here's hoping it works for you.

I can understand being worried about the liquid diet. My GP prescribed me about half a million Fortisips, so I played it safe and lived mainly off those when I was on a liquid diet. Very occasionally I would have Smash (instant mash potato) and bisto gravy as a treat: Smash is so fibre-free that it was all right on a liquid diet apparently. But otherwise the only other thing I had was soup, ranging from the commercial so-called nutritional soups, such as Build Up and Complan, to home-made soups made with home-made chicken stock. The only thing they had in common was that they'd be smooth: no 'bits'. I never had smoothies; never, ever felt like them, presumably because the Fortisips were sweet and so I always felt like something savoury as an alternative.

I dunno how long you'll have to be on the liquid diet for, but in my experience I found it easier than I expected. People felt sorry for me, but I never went hungry - or even missed solid food that much, strangely. Mind, I hope you'll be off it by Christmas Day all the same, though :-/

Best of luck; hope you get better soon!

Gumby, I'm a little surprised that you would need IV steroids if you're able to drink a liquid diet. Yes, you've got to go IV-everything when obstructed, but if it's OK now to drink stuff, you should be OK to swallow pills. You can crush them up if you like and add them to a drink, but I don't even think that would be necessary. And pred pills are very small anyways, which makes it easier on your insides.

Ditto for pain meds. Actually, they've got those fentanyl patches, so you don't really have to swallow pain pills.

So in other words, it should be possible for you to function outside the hospital, provided you don't get another full-blown obstruction that would necessitate IV administration of drugs.

Of course, you might have to pass on those scrumptious Christmas dinners. Maybe you can settle for a turkey-and-cranberry flavored soy milk shake?

Happy holidays,
Robert

Post Edited (ozonehole) : 12/20/2011 12:35:24 AM (GMT-7)

I'm so glad you're back and hope you are able to go to Vegas and have a great time! I'm sad your Crohn's has gotten worse. You should definitely try the immunosuppresants like 6mp or azathioprine, if they help you and make you feel better they are worth it. The holidays are definitely a tough time to be sick as it's the time spent with family and friends and should be a joyful time.

Happy Holidays, Gumby, and all!!! Just in case I don't get back here before Christmas.