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Crohn's Disease
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Posted 4/23/2010 7:07 PM (GMT -7)
Last time I felt this way, I ended up in hospital for five days. They originally kept me overnight 'cause of the potassium levels were dangerously low and then kept me since my pain level was too high. Well, now I'm feeling like I did then. But I haven't started vomiting like before. Meanwhile, I have a new symptom. My stool is reddish now and turning the water in the toilet bowl green from bile. So basically, the ulcers that I was told I had THEN are either bleeding now or something else is happening that is new.

The help I'm begging from all of you is should I go to the ER? I've never had bloody stool before with my Crohns. NEVER. My discharge from hospital papers said to contact physician if I had nausea (which I do), bloody in stool (also new fun thing...and I haven't eaten anything Red recently), along with other things like high temp which I don't have. So do I go or stay? Do I wait it out? The pain from before is also back. It's building back to what it was actually. So do I wait til Monday to see the regular doc or do I go to the ER?
Posted 4/23/2010 7:13 PM (GMT -7)
If you feel that bad that you have to ask...you probably need to go...it is the safest of options...
I would usually have to talk myself into going, and wish I had gone hours earlier...
Here's hoping that you find some relief somehow...
Posted 4/23/2010 7:32 PM (GMT -7)
Heh.

I'm the same way which is why I'm asking here but if I didn't need to go, I'll end up exhausted for work tomorrow. Still and all, I'm going to take a bath and then go from there. I hope afterward I'll feel well enough...if not...decision is final.
Posted 4/24/2010 8:09 AM (GMT -7)
I agree that if you are feeling that bad, its best to go back to the ER. Good luck and do keep us posted. Hugs!
Posted 4/29/2010 2:27 PM (GMT -7)
And here I am again. I went to the ER and ended up there from Thursday night through til Tuesday. What can I do about it all. The main doc I had kept trying to talk me into Humira or Remicade. I told him some of my concerns about it from all the different items I'd encountered. And we all know how VERY much fun the upper GI and the colonoscopy and the SBFT. YAY! And what did we learn through all the funness is that my Crohns is active in my ileum. Didn't I know that already? ~sighs~ I was given probiotics, flagyl, cipro, potassium (where the bleep does it keep vanishing???), and all they've done is up the amount of Pentasa to 3 times a day for the present. Hehehehehe...I can add this lil funny as hell moment: during the upper GI and the colonoscopy they had to put me down like an elephant. Apparently I kept thinking I should move far FAR away from those painful scopes even in twilight sleep. LOL!

God though...I'll say this: I'm exhausted to be dealing with all the pain and sickness. Can't stand to eat food. Can't stand to drink Ensure. Don't want anything ever again. Which will land me back there so drink I shall. Still, depressed with all this fun fun fun.
Posted 4/29/2010 11:01 PM (GMT -7)
That all sucks Joie I'm suprised they didn't put you on Prednisone or is that a prenatal thing?
Posted 4/30/2010 6:29 AM (GMT -7)
I don't understand why you don't want to go onto Remicade or Humira. We have many members who have been able to successfully get their Crohns back under control with these meds. I really think you need something stronger than Pentasa. JMH
Posted 4/30/2010 10:58 PM (GMT -7)
Actually, the reason I'm not wanting to start the Humira/Remicade route is because of my age. Sounds funny eh? I'm wanting to put them off for as long as I can simply because I worry that at such a young age as I am, it will at some point stop working and I'll become immune to them. With the Fibromyalgia, I've noticed that I acclimate amazingly fast to medications. I worry that the anti-depressant I'm on isn't working. Actually, I KNOW for a fact it isn't working or I wouldn't be as depressed as I truly am. Financial worries, health worries, relationship worries. I've become completely withdrawn after this last hospital visit. I'm in pain constantly, I'm tired all the time, and I truly know that if I don't do something, I'm going to try suicide soon. I've gotten some numbers for local mental health places already but I'm still wondering how the hell I'm going to pay for them. I've had the worst birthday of my life simply because I couldn't enjoy eating or spending time with my sister (who came in from out of town to be with me for my birthday). I'm constantly worried about dependency/addiction to the pain meds I'm on. I'm supposed to reschedule a pain management specialist sometime soon but its hard since my husband isn't on a set schedule anymore at his work. Plus, I'm not making as much as I usually do at work since I've had to spend two different 4-5 days twice this friggin' month in the hospital.

I'm TRYING so hard but I honestly want to die from all the constant pain and exhaustion. I don't want to talk to anyone. I don't want to see anyone. I don't want to go to work. I don't want to do anything. I can barely stand to read (my favorite addiction is books) or watch tv. I don't enjoy blasted thing since I left the hospital the last time. I am so tired of all of this crap. And I say again, I know I need professional help. I have insurance but it sucks more money from us then if we didn't have any. I sent a request through a hospital advocate/social services for some form of disability assistance. I can't pay the $11,000.00 bill from the first hospital visit. How am I supposed to pay the next bill that comes in when I had the full gauntlet this time of CT scans, upper GI and colonoscopy, and SBFT? I say again about being so blasted tired. I spent last night having the FUN FUN FUN vomiting sessions. You all know them...the surprise vomit sessions. Where you're not even that nauseous when you turn your head and BAM, projectile vomiting. Yay! I'm tired and I can't stop my blasted mind from imaging taking every pill in the house. Or jumping off our balcony (which is extremely stupid since we live only on the second floor). Maybe if I hit head first. Grrrrr, stupid thinking!!!! And I say again, I KNOW I need professional help this time. Which means more money going out then we have coming in.
Posted 5/1/2010 12:06 AM (GMT -7)
You definately need urgent medical attention Joie. Stop thinking about the money and get help before you die! Figure out the rest later. Don't wait please!!! Rob
Posted 5/1/2010 6:06 AM (GMT -7)
Joie1~was that main doc your GI? If not, what do they say?

There are drugs to try between Pentasa and Remicade that may help get you back on track. Please get to your GI (or a new one) and get the help you need...the ER helps for those urgent episodes, but they don't follow you back to health...once you start feeling better everything else will improve!

(((HUGS)))
Posted 5/1/2010 8:15 AM (GMT -7)
I agree there is Imuran or 6mp you can try too. But first you really need to get this flare calmed down and I think at least for a short time until one of these two meds could kick in you should be on Pred or Entocort to quiet things down. I know this disease can really get to a person sometimes. Folks just don't understand that we are truly suffering. They look at us on the outside and say you don't look sick, but inside we are suffering terribly. I hope you can get in with either your family doctor or your therapist soon to discuss your depression and maybe change up your meds some. Good luck and keep coming here and venting to us.

Hugs
Gail*Nanners*
Posted 5/1/2010 12:47 PM (GMT -7)
Thanks for all the thoughts. My main doc at the hospital wasn't a GI but I was on the floor where the GIs kinda live. So, after main doc made notes and suggestions, the GI would come by and make HIS notes and suggestions. Not that I really knew too much about them. Hehe. Tired. Kinda vomitous today. That's my new word for the nausea: vomitous. Haheheee
Posted 5/5/2010 2:22 PM (GMT -7)
Nanners you took the words right out of my mouth!!! I'm always amazed at how long people wait to start the drugs that might REALLY work and end up losing part of themselves for several years. And what really gets me is the number of people who insist on hanging onto their intestines through several years of hell before finally having surgery.

And if somebody doesn't explain this probiotic thing everyone keeps mentioning to me I'm going to lose my mind!!!!!!
Posted 5/5/2010 4:16 PM (GMT -7)
You are at the point where you should stop worrying about stuff that can happen years down the road, & worry about today & tomorrow! You could try Methotrexate in the meantime.
But from all I heard, I see a perfect candidate for Remicade. At your age, I'd be wanting my life back! So go get it back, I wish I qualified for Remicade myself, but I don't.

Sincerely,
Matthew
Posted 5/5/2010 4:42 PM (GMT -7)
I think at this stage the last thing you should be worrying about is your age. You sound like somebody whose last straw has been broken and you desperately need to repair it. Please reconsider the Remicade or at the least a steroid/immunesuppressant combo. But personally I think you need to hit this flare hard. If Remicade doesn't work, or stops working quickly, it would be bitterly disappointing but on the other hand you would be no iller than you are now. You would have lost nothing - except perhaps a last hope, but that last hope alone is simply not sufficient to sustain you through this exceedingly difficult period. If, on the other hand, Remicade puts you into remission for years, you will regain your life back - and while your disease is in remission or in a milder state, other maintenance meds stand a better chance of working. At the moment pentasa obviously isn't strong enough to cope with your level of disease.
Posted 5/6/2010 12:14 AM (GMT -7)
Cleo35 you said "And if somebody doesn't explain this probiotic thing everyone keeps mentioning to me I'm going to lose my mind!!!!!!" Why not start your own thread and be specific about what information you need?
Posted 5/6/2010 1:34 AM (GMT -7)
Joie1, Please take a deep breath and know that you are going to make it. I understand why you are worried about starting the big gun medications, but please please please consider starting Remicade or Humira. I have been on Remicade since I was 24 years old and have tried humira and cimzia also. They say that you can't go back to Remicade after developing antibodies but I am living proof that you can go back and get results. It has taken me through the past 6 years and will hold me over until a new medication comes out. When I first was started on Remicade, there were no other TNF inhibitors and I was scared to death that I was going to be stuck with out a med since I had failed all the other ones. Then came humira, and then cimzia and tsabri. There is a ton of research going on because of the steps that were taken when Remicade was discovered. They were not trying at the time to develop a medication for Crohn's disease but were trying to develop a chemotherapy that did not kill the entire cell but could focus on a particular protein. What transpired was not a medication for cancer like what was intended but a medication that could help many auto immune disease that were inflammation based. My point with this history lesson is that they discovered one medication by accident that is a miracle drug but it also let researchers to looking into an entirely different genre of medications. This has opened many doors towards Crohn's medications and it is amazing how many medications are in the works and how much they now know about the existing ones.
These medicatons could severly help with the symptoms that you are experiencing and may be needlessly suffering. You could also help with your depression by eliminating the physical and emotional pain. I also feel that it is of the upmost importance that you go and talk with someone about your depression immediately. The fact that you are thinking about taking your life means that you are in an emergency that you have to take care of. Let me tell you from the point of someone who lost a brother from a self inflicted gunshot wound, there is nothing to describe the pain that a family has to deal with when they lose someone to suicide. We hurt so badly because who knows if we could have help him just by talking. We had no idea that he was depressed and only found out when we read his note. His death was completely an avoidable and preventable death and I will not let you make the same mistake that he did. I know right now you feel like you have the weight of the world upon you but every situation can be fixed or handled. I know that you can overcome this and even though you may not know me personally I BELIEVE IN YOU.
Posted 5/6/2010 2:35 AM (GMT -7)
I had my first remicade infusion when I was 16, I'm 23 now, I use it occasionally alongside methotrexate (once in remission you don't have to take the remicade anymore) There are already so many more drugs available now than when I was diagnosed 8 years ago. I wouldn't worry too much about using up your options - what I would worry about is your quality of life. Being on meds such as these meant I could finish school, hold down jobs, go to uni, get myself a social life and do sports again. I know it can sound scary but just think of the pros, it really sounds like your struggling so please consider it.
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