Having a hard time dealing with this flare

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afidz

afidz

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Jun 7, 2012
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I have been in a mild flare for about a month now. But this flare is different than any of the others I have had. I rarely get cramps, when I do, they are very mild and I can usually ignore them. If I get D its only for one day. So I guess it seems pretty stupid that I am complaining. But Crohn's is manifesting everywhere else on my body. my skin has hives everywhere and its unusually dry. I get sores in my mouth and my throat hurts, my joints have swollen up and are very painful. I have Iritis in my right eye, black floaters in my right eye, and my vision in my left eye is rapidly regressing. Partnered with the fact that I have a very severe hernia that causes a lot of pain and not being able to sleep because of all the pain, I am miserable.
I can't go on meds because I am approaching surgery. I am at a high risk of infection and complications with out the meds so adding them to the mix would not be a very smart decision. But I am desperate for relief. I called my GI last week and begged him to put me on something. He talked to my surgeon and they don't think its a good idea for me to be on anything. He let me know that if all goes well I can go back on meds in 8 weeks. Not going to lie, hearing that I have to feel like this for 8 weeks was pretty upsetting. who knows how much worse its going to get in the mean time.
I am so frustrated with my life right now. I don't want to be anymore. I want a break. I am tired of "being strong". I have been strong for long enough.
 
Two more weeks though and you'll have your surgery. :D I do think that some of your symptoms will clear up after your operation. I really do. Also once you have the surgery being on the liquid diet in the hospital may also help with some of your symptoms. Switching to softer foods now like soups, stews and a supplement drink of sorts (I've heard that the powdered Ensure does not have Carrageenan in it, even though it has a lot of sugar, its something to look into for now and you can switch to something better later on after some research) may help with some symptoms as well.

You know how to find me if I'm not on here. Take care lovely! :hug:
 
:hug: I'm so sorry, afidz. You've really been having a tough time, haven't you? :(

I agree with Jen - some of it is likely to clear up during your recovery. I really, really hope it does. You deserve a break!!

:hug:
 
Its just a little longer to stay strong...I have not had surgery but it seems that people on this forum who have had surgery feel so much better!!!!!
 
Stay strong (yeah it's hard) but there's hope on the Horizon. You can do it xxx
 
Afidz, big hugs to you. I know just what you mean about not wanting to be strong anymore. I once had a co-worker who said to me something along the lines of, "You have an illness that affects you every day? I don't know how you do it! I couldn't do that, you're so strong." And I just took it totally the wrong way - I yelled at her, "You make it sound like I have a choice!" So I get it. You have to be strong, you have no choice, that's how every day is, and it's wearing on you. I have so been there. But it sounds like there is an end in sight, as the others have mentioned. Is there something fun you can do for yourself in the meantime? Maybe get some cute new PJs or a robe or slippers for when you have your surgery? Or plan something fun for when you've recovered from the surgery? Something to look forward to and to have a bright spot in all this misery. Hang in there, not much further to go now and hopefully lots of good, lasting relief is on the way.
 
Cat, I am planning a vacation to the Gulf of Mexico for June, hopefully I will be recovered enough by then to enjoy it.
 
I'm sorry you're having such a rough time, afudz. I wish I had the right things to say and magic advice, but all I can really do is encourage you. I know that you've been nervous and counting down the days to surgery, but maybe the others are right... maybe it's a countdown to all the relief you'll get as a result? :hug:
 
Thanks sawdawt. Your support (and everyone else's :p) really mean a lot to me. I hope that everything gets better as a result of surgery.
I think what I am worried about right now is that the stress the surgery will put on my body is going to truly make Crohn's active. I am not getting those kinds of symptoms yet, but there is nothing stopping it. I really dont' think I could deal with the pain from surgery, the pain from Crohn's and Diarrhea all at once so I am crossing my fingers that doesn't happen :hug: thanks again for your support :heart:
 
afidz said:
I have been in a mild flare for about a month now. But this flare is different than any of the others I have had. I rarely get cramps, when I do, they are very mild and I can usually ignore them. If I get D its only for one day. So I guess it seems pretty stupid that I am complaining. But Crohn's is manifesting everywhere else on my body. my skin has hives everywhere and its unusually dry. I get sores in my mouth and my throat hurts, my joints have swollen up and are very painful. I have Iritis in my right eye, black floaters in my right eye, and my vision in my left eye is rapidly regressing. Partnered with the fact that I have a very severe hernia that causes a lot of pain and not being able to sleep because of all the pain, I am miserable.
I can't go on meds because I am approaching surgery. I am at a high risk of infection and complications with out the meds so adding them to the mix would not be a very smart decision. But I am desperate for relief. I called my GI last week and begged him to put me on something. He talked to my surgeon and they don't think its a good idea for me to be on anything. He let me know that if all goes well I can go back on meds in 8 weeks. Not going to lie, hearing that I have to feel like this for 8 weeks was pretty upsetting. who knows how much worse its going to get in the mean time.
I am so frustrated with my life right now. I don't want to be anymore. I want a break. I am tired of "being strong". I have been strong for long enough.
Click to expand...

I'm sure I speak for most of us when I say how sorry I am and how I wish I could make your pain go away! Pain is one of the hardest things to deal with when you are in it alone and you feel like noone can possibly know how you are feeling. But, I can say that it gets better and that is the only thing I can say to make you feel somewhat better. I have fibromyalgia and arthritis and I couldn't even go up the steps except one at a time for a week, now it is finally lessening. I started a new med for it today. I pray it works. The pain goes to different parts of your body and you just wake up and it's there and it doesn't leave till it feels like it. I never dreamed my life would end up the way it did. But, I am stronger for having gone thru so much and God has helped me so much too and being able to talk to you who are suffering too. Well, that really helps! Someone understands!:hug::heart:
 
Afidz,
I'm sorry that you are going through all this. I pray that you get well soon and recover from your operation fast.
Before I came to the chatroom I was very depressed and didn't really think that things would get better, as a matter of fact, I thought that my life was over and would not get better. With the help from people like you and all my other friends in the chatroom I now have a different out look on everything.
When we first met you were in the hospital and you were an inspiration to me then as you are now.
Keep your head up girl, you will get through this and all will be fine.
Jim (Pops)
 
afidz, Have you considered going on Exclusive Enteral Nutrition while you wait for surgery. It might help to clear up some of the symptoms while you wait and it might help to improve your nutrition so you are in a better condition for surgery. Have you ever been on a liquid diet before?
 
happy, I have been on a liquid diet before but only in the hospital. I have not considered enteral Nutrtion, I don't really know very much about it. I am being mindful of what i consume right now. I am also discussing the best diet options after surgery to help my body heal.
Jim, you are such a sweetheart, words can not express how much you and all of our friends in chat have helped me. It helps to not feel so alone.
Thank you to everyone that responded to my thread, its great to have friends here that care :ghug:
 
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