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10-13-2010, 06:30 PM   #1
rottengut91
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I'm miserable

Today has by far been one of my worst for a long, long time. I am miserable. I've lost count of how many times I've been to the bathroom today, but my bottom tells me far too many. My belly is so distended, it is absolutely painful. Luckily, I am able to pass the gas. They're not just little toots, I'm talking long, drawn out gas expulsions, or explosions if you ask my daughter. I have been getting bloated after everything I eat lately. In fact, this past Friday, I went to ER because the pain just got to be too much. I hate the idea of going on Prednisone, but I gave up and decided I needed relief, no matter how I was able to get it. They didn't give me Pred., not sure why, but did give me pain meds. Started with Fenanyl, but didn't do much for the pain, then switched to Dilaudid. At first the Dilaudid helped, but because I am allergic to Morphine, and Dilaudid is a deriviative of Morphine, it caused me to get a severe, and I mean severe headache. Plus I started vomiting. It was so bad, I decided to stop pressing button to get the Dilaudid. I would rather deal with the pain of the CD, than the nausea, vomiting, and terrible headache. They finally switched me back to the Fentanyl. It helped a little with the pain, but at least the nausea, vomiting and headache (with help of double dose Compazine & Imitrex) went away. My usual GI was not on-call this weekend, so another doc from his office and my CR sugeon decided after reviewing my CT scan that the best approach at this time would be to start me on Humira. They wanted to do it then in the hospital, but it's a medication that is not kept on-hand in the pharmacy. It has to be special ordered. Now I'm waiting for it to be delivered here to me at home.
Honestly, I'm a bit skeptical, and voiced my concern regarding this as well to my CR surgeon. I have not had success with any of the prior meds. The only ones I haven't tried are the Biologics. I am ready to feel better, but I'm also a realist. I have severe stricturing at my anastomosis. This happens to me all the time, thus the three prior resections. I truly believe that surgery is a better option for me. I just don't forsee this medication doing much for the narrowing. Frankly, I can deal with most of the symptoms that come with CD, but when there is narrowing involved, it adds a whole other dimension to the suffering. The diarrhea, gas, bloating and pain from that is unbearable. Not a day goes by that I don't experience this misery, unless of course, I go on a pure liquid diet. I did feel much better while in hospital after being on clear liquids (and the pain meds), but as I have increased my diet to include even low residue foods, the diarrhea,gas, bloating and pain have come back with a vengeance. I just don't want to have to deal with this for an extended period of time, especially while I wait to see if Humira can help my bowel heal. I do understand the doc's concern about me losing too much of my bowel and the impact that will have on my overall health. They say there is only so many times the bowel can be cut and reconnected without causing problems. I already had a leak at my anastomosis, which we didn't even know about until they surgeon was inside of me.
Maybe I'm just a pessimist, impatient, or both. I just want to feel normal again. I feel like most of my life is spent in bed. I almost never feel well and I am tired of telling my children that mommy doesn't feel well. My health is already having an impact on their lives. My children often ask me how my tummy feels and if my butt hurts today. I feel I'm missing so much. I'm plain tired of being tired. Does anyone else feel the same.
Maybe I just need to gain a different perspective. Humira may very well improve my condition, I just don't want to be on it for a few months only to find it's not working and then have to have surgery anyway. If I do need to have surgery, I just want it done and over with. I want to be healed and feeling good for the upcoming holiday season. I've been in this flare for almost a year now, and I am done with it, both physically and mentally.

Thanks for lending an ear, or eyes I guess.

I hope everyone else's day is going better.
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10-13-2010, 07:53 PM   #2
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Julie I'm sorry! You seem so upbeat!! I hope it gets better soon! I guess there will never be any guarantees just educated guesses!! Good luck my games friend!!
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10-13-2010, 07:58 PM   #3
rottengut91
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I have my moments of self pity, but for the most part I try to remain chipper. My kids help with that. They make me so happy. I'm so lucky to have them. I'm also very grateful that they have remained healthy for the most part. I can't imagine what you go through watching your son suffer and not having all the answers or means to take his pain away. Kudos to you my friend.
10-13-2010, 08:05 PM   #4
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Thanks Julie but he really hasn't suffered since his dx and initial pred run early this year. Believe you me, I don't handle it well when any of my kids suffer. The worst he has had since Jan. has been the aphthous mouth ulcers.
10-13-2010, 08:07 PM   #5
rottengut91
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I hope for your sake and his that he remains in relatively good health. Your being an awesome dad by keeping up with current treatments and such. Keep up the good work dad!!!!
10-13-2010, 08:51 PM   #6
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Awe Julie, I had no idea! You poor soul. I know that pain all to well. I am with you when it comes to strictures, I just believe nothing can help that... You have had 3 resections?? How far apart. I have had 2 resections 10 years apart but been 7 years since my last one and have exhausted everything including the biologics.

I too sound chipper most times but there are times when you get so angry and ticked off and tired of the merry-go-round. Trust me venting really helps. WE are always here to back you, no matter what ok? ((hugs))
10-13-2010, 08:59 PM   #7
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If it was my choice, I would go with the surgery as well. If the disease isn't too active, but just a problem with a stricture, I would go with that option, rather than exhausting more medication options.... lol.

I think you have been through all the same routes I have, and it sounds like you know exactly what is going on and what can/should be done about it... wouldn't life be nice if the docs would listen to us? lol

As for venting, definitely vent away... we's got big shoulders
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