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Advice on calling docs when feeling bad again

I was wondering if anyone has any advice on when to call the doc. I have never been one to go in regualrly to any GP and indeed avoid at most times until the last possible minute....except when it comes to my kids, then I go visit for Sure...

But with CD, I am curious as I seem to be backsliding, well not *seem* but have been for four days (I only had one what I would call a good day when on although the severe go to ER pain isn't there) and haven't changed my meds ( iam on the high dose of pred still for at least 2 more weeks and pentasa 4g) or lifestyle other than what I thought was a good way (more nutritionally sound things incl Ensure etc). The pain is coming back but only off and on, sometimes with a vengeance, and even more fatigue than before it's nearly impossible to funtion at times...plus sometimes I now have blurred vision and now some blood showing which I never had before, and these odd sharp pains in the bottom area ( I was 20/20 last vision test before the dx of CD) and get dizzy....and not after the pred intake which has happened every time.

Should I hold off and wait two weeks to see the GI doc or call ormaybe just hit up my GP - My surgery consult (fistula) is in 5 weeks. - what do you guys do and when? I guess I am a touch nervous to go in and then be told it is what it is kind of thing....this is new to me, the CD dx, but now I know that I have had it for years the more I look into it and the symptoms. *sigh*.

If you have any advice, it's greatly appreciated.
 
I don't know what it's like in Nova Scotia considering medical treatment. But here in the U.S., I can call my doctor's nurse, tell her what's going on, and she relays it to the doctor and calls me back. Sometimes, though, they won't say much without me coming in. A phone consult is like a free appointment.

With your symptoms, though, it might be a good idea to go ahead and give it a try. I wouldn't want to wait two weeks if I felt like I was deteriorating significantly. Your GP might be able to give you some advice also. I know what you mean about being told "it was it is," etc., where some doctors act like you're wasting their time. The only advice I can give on that is to be very specific about all the symptoms you're experiencing. Some of us have a tendency to downplay our symptoms.
 
yes, i would agree keara. i think we all get used to symptoms appearing and abating as the crohns does its thing, but if something new happens, and sticks around, and increasingly makes you feel bad - then yeah, i'd say go see your doctor, definitely.
 
The hardest thing for me, I think, wass to admit that I was feeling bad again... since I've experienced remission I was just in denial
 

Kev

Senior Member
A flare up can typcially last days, even weeks. As to head to the ER, or try to get into your GP, or wait for your scheduled GI visit, that's a judgement call only you can make. Is your GI fully keeping your GP in the loop? As for diet changes, THEY can make a big difference. Lots of GI's will push replacement meal supplements like Ensure, and most times there are no problems. But you may have a problem with them,, what are their contents? Lots of Cassein (milk protein) or lactose (milk sugars) or other milk products (watch for terms like 'whey' or 'milk solids'). Those can play havoc with some of us... some of us with IBD seem particularly vulnerable to many dairy products... extra diarhea, big increase in gas, added pains. I can't go near lactose for some bizarre reason, even if just in a little pill. any changes you've made just prior to your downturn you should roll back ASAP.

that's what I would do.. go back (except for meds) to doing/eating as you were BEFORE this recent downturn/flare-up, keep your fingers crossed, and decide from there.
 
Hey thanks. Will kepp all in mind.

Kev - what exactly is cassein (it's in the ensure but the ensure says lactose free) and I know I can't do lactose right now for sure. I googled it and found it was for body building. Does lactose free mean it can still have lactose or is this something entirely diff I should watch for when reading all those labels?

Fore sure I hear you on the downplay of the symptoms aspect...plus I am finding that now 3 months into this *flare* or *actice* stage my level of tolerance has increased significantly. What would have been a 15/10 on the pain scale is now an 8, oh I can handle this type of thing...and I have a huge tolerance for pain to begin with. Funny how your body starts to cope. MInd over matter.
 
I would go to the ER because if you are at an eight in pain and you don't get any treatment things could go from bad to terrible. I was the same way and then my pain went to a 10 and I had to be in the hospital for a week. I would call your GI and tell them what you are going through and see what they say tomorrow.

God bless
 
Thanks - I am watching things pretty close and oddly, today went better *whew* and I have total optimism for another better day tomorrow. Maybe the pred is really kicking in now, but you are most right Jeff D about not playing around too and my GI did tell me that as he said I looked worse and has worse symptoms and complications than I was telling him how I felt...I guess it's time not to be too strong and maybe be realistic to get this thing knocked down a notch before having to have it knocked down for you in the ER or something. Again, appreciate this forum! you guys have no idea, and you know, it's the first time I have ever joined one of these things online, ever. What a thing.
 
Yeah I was in a state of denial for about four years that a pain in my butt was just normal and having blood in my stool was normal. A month ago or so I went to the bathroom and almost collapsed because of the pain. My parents gave me an option to go to the ER now or in two hours so I went to the ER and I found out I had a deep abscess that was already draining but without antibiotics was just getting more and more infected. I also had and still have three inches of active Crohn's in my rectum at the very end of the line. I was in the hospital for a long painful week and lost a lot of muscle mass. Just don't make things too difficult. Be honest with yourself and your doctor.

God bless
 
I hear you Jeff D - thanks. I have calmed down a bit in the last wo days and even ate last night...but that was a mistake...oh well, go back to my routine. I am trying to eat as I am showing some signs of malnutrition and dehydration even though I am really trying to stay on top of it - I am wondering if things just aren;'t being absorbed...My cals are up (aim for 1200-1500 but I have to eat 12 times a day to hit it as any big meal is a no-no for too sure), but the weight won't go up at all and any activity at all wipes me out 110% and I drop weight - sort of like if I stay on the couch I am ok and stable but if I attempt an hour for groceries I am doomed to feel like I am going to pass out. ...But I see the GI soon and hope to hold off. I am sure the pred is keeping the pain at bay, although crampy and have some issues, it's way better. So overall, I am positive even with the nasty wx here! lol
 

Kev

Senior Member
Well, cassein is how I mis-spell casein... a protein found in milk, cheese, dairy, etc.. So, sure Ensure can be lactose free (no milk sugar) but hi in milk protein (casein) AND some folks (with or without IBD) can suffer a vareity of allergic reactions to it.. hey, practically everyone who seems sensitive to milk or dairy products makes the leap that they are 'lactose' intolerant, but it one looks into it, there's a number of possibilities OTHER than just lactose... Think there are a number of websites dedicated to milk allergies.. May be worth a little reading to see if you discover commonalities to your situation..
 
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