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A few questions plus a rant. Apologies and thanks in advance.

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Crohn's Disease
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Posted 7/24/2008 9:10 PM (GMT 0)
I had surgery recently for a near fatal ectopic pregnancy, and they put me on oxycodone(painkiller) afterward. That being said, I was not allowed to take my asacol while on it.

I'm now off but am still taking only prednisone--40 mg a day--doctor said only 20 mg, but I cannot function without the original 40 mg prescribed after my colonoscopy this past May.

I understand that it's normal to feel fatigue due to the blood loss from the Crohn's in addition to that blood loss from the pregnancy, but I also feel nauseated(recently started taking birth control. Could this be the cause?), horrible stomach pains, the desire to vomit though it never actually happens, and I'm still losing blood in my stool which, if it means anything, is not pure liquid but not pure solid either.

My question is do any of you take only prednisone and what were/are the results?? I'd like to start taking my asacol again, but it was left by the stove for the week that I was recovering and I'm afraid of what the temperature extremes may have done to it. I may call the pharmacy and see if they can replace it, but I feel like I'm not taking caring of myself by only take steroid medication.

I was told that sometime soon I would need to start something stronger than just asacol and prednisone though as my case of Crohn's is rather severe and asacol itself just won't suffice. They worked well for about a month, but now I am right back where I started only maybe a little more bitter towards people; they don't understand why I can't get a job or start 'exercising and eating right' to feel better. Prior to this illness I did 200 situps a day, had visible leg and ab muscles, and ate nothing but the right fruits and vegetables, lean meats, whole wheat bread, avoided things like high fructose corn syrup or modified corn starch, and got plenty of calcium. Why is it so difficult for people to understand that what makes normal people healthy can harm those of us with Crohn's? It's not rocket science.

I've just been feeling terrible in general. I want to be able to live semi-normally again and am so afraid that I won't be well enough in time to go back to school this coming semester. Any advice for feeling better is greatly appreciated. I've noticed that the higher dosage of prednisone helps me function a little bit better, and kefir and ramen seem to be okay. I just am tired of sleeping most hours of the day and feeling dead anyway. Any words from those of you who actually know what is going on would mean a lot. You know how hard it is to find the right words from people who, no matter how much they love you and try to understand, simply can't.
Posted 7/24/2008 10:55 PM (GMT 0)

Wow you have been trhough a lot. Here is a BIG hug (((((Lmills))))). I have had similar issues, minus the dangerous pregnancy and have similar fears with going back to school. I don't have much advice, but I too have slept my summer away. The only good out of it is now I can function a few hours at a time. I got off my pred in June. I hated being on it. I was extremely sick on the pred also. It is normal for us to be so fatigued. Especially while in a flare. I am thinking of you and hope you feel better soon. I was sick when I was in college and it is tough. I even yelled at one of my professors (bad idea, but she understood my frustrations). My prayers are with u and I hope you feel better soon.

Kgirlie

Posted 7/25/2008 1:07 AM (GMT 0)
In the past I've taken only prednisone - but it was supposed to be only to get my symptoms under control and then utilize other medications. Unfortunately I've had some bad experiences with a lot of the other medications, so I ended up on high dose prednisone with all the nasty side-effects for a long time (21 months) and couldn't taper without getting a bad flare and really sick (steroid dependant). I'm now on remicade and much improved. I'm so glad I'm not having to take prednisone any more.
I'm sorry to hear you're having such a hard time of things. <<<<hugs>>>>>
I hope things improve for you soon,

Bev
Posted 7/25/2008 2:00 AM (GMT 0)
Hi I guess I would talk it over with your GI. I know the pred. made me not able to cope mentally as good as i usually do . It helped me for awhile though but I ended up with a resection my CD was DX as severe too .I had IBS for years so seems like I always had to watch what I ate .The pred. put alot of weight on me and I ate just about everything I could. lol gail
Posted 7/25/2008 5:35 AM (GMT 0)
Thank you for your comments..it's nice to hear from real experiences.
The thing about the prednisone for me though is that I don't really have any of its side effects. I don't have moonface, I'm underweight, and it makes me feel a lot better though not like when I first started taking it hence the worry about blood in my stool and really bad stomach pains.
I'm wondering if there is a more serious problem going on here or if the Crohn's itself was just exacerbated by the pregnancy. I know I started to feel so much worse when I was pregnant in spite of taking the prednisone.

I'm hoping taking the asacol again will help, but I suppose I'll just have to call the pharmacy and see if it's still safe to take because it was left close to the stove while I was recuperating and I noticed it felt pretty warm one day. I really hope it's still usable. Or do pharmacies replace damaged medication?
Posted 7/25/2008 2:02 PM (GMT 0)
I don't understand why you couldn't take your Asacol with the Oxycodone. I take Asacol and Oxycodone every single day and have for a really longtime. I just don't get where they thought you couldn't take the two together.

I would call the pharmacy and check with them to see if it was damaged. Maybe you have a refill on it and can just call that in and start taking them instead. I can tell you for me that I quit taking my Asacol after a resection (doctor told me I didn't need it anymore, HA!) and I wound up getting sick again. Went back on them and started feeling better in a short time. Has your doctor talked about starting you on any of the immunesuppressants like Imuran or 6mp or one of the biologics such as Remicade or Humira? Those might be options for you too. Good luck and I hope you get feeling better.

By the way, the BC pills can make some people really nauseous. I know one of my daughters can't take them becuz the make her so sick. (((HUGS)))
Posted 7/25/2008 2:40 PM (GMT 0)
Have you been feeling 'worse' since your surgery? Were you given antibiotics? If you gut is out of whack, the b. control pills could also be contributing to your symptoms, as they can initiate yeast overgrowth, along with antibiotics. Just thinking out loud hear, trying to help you figure this out.
Posted 7/25/2008 7:23 PM (GMT 0)
The doctors said it had something to do with low blood pressure. That was one of the reasons they had to watch me closely because mine was much lower than usual, and they said the combination of the asacol and the oxycodone would't be safe in my case.
He hasn't started me on anything else yet. He said he didn't want to prescribe certain medications right from the start because he wanted to see if I could be better without them. I have to say that I respect him for that though. I was really afraid I would have someone who would put me on anything and everything for their own benefit. I'm hoping come this Monday(my next appointment) we can figure something out though. Antibiotic treatment is really tempting. I'm afraid to start the other medications honestly. I've heard some of you say they work wonders and others say that they're terrible. I suppose the potential side effect of cancer on most of them is what frightens me, but at this point I think I'm ready to try anything. I just want to be healthy enough to take care of myself and go to school..especially since the campus is rather large and my classes are conveniently spread out all over. Ah well.

I feel better after the surgery actually, but that's not saying too much I think with the whole picture...The pregnancy really did a number on me, and the subsequent treatment really alleviated so much but a couple weeks later and things are right back at square one.

I can't seem to gain weight..I can see my rib cage at this point and I do eat BUT it doesn't seem to make a difference. Actually, I get extremely hungry in the wee hours of the morning, and I've noticed this makes things worse.Do any of you know if there is a link between that and Crohn's symptoms? It makes sense that certain stomach functions pertaining to hunger might affect the rest of the digestive system negatively if stretched the wrong ways etc. etc.

Anyway, sorry for the rambling. Thank you guys again for your words. They're a tremendous help and comfort!!

*side note--that's terrible about the birth control pills!! I hope your daughter is okay Nanners...it's so easy to dismiss nausea on hearing about it but once it comes again..well, I'm sure most of you know how terrible it actually is. Such an uncomfortable feeling..
Posted 7/25/2008 7:41 PM (GMT 0)
I take Estrogen because I have had a complete hysterectomy. When I was having some really bad nausea, my family doc said maybe its the Estrogen. I laughed at him because I have been on it for years and have never had problems with it, and knew it wasn't the cause of my nausea, it was my Crohns.

My daughter is fine by the way. She has 3 kids and just uses a different form of b/c though.
Posted 7/27/2008 2:42 AM (GMT 0)
I feel sad to hear so many stories where a doctor will blame problems of that nature on something unrelated...and fortunate that mine has yet to do so. It's good to hear that your daughter is all right though!

I'm not sure what is going on with me anymore, but I've had so many negative, fatalistic thoughts today. I can't remember ever being unable to control crying but it just left and in a way I've never heard myself do. I ate too much last night at dinner with my mother I suppose, but it's never been this bad. I think it must be the most excruciating level of pain I've ever felt. All of surgery experiences were easier than this. At least they gave me painkillers. Last night I slept maybe an hour because of this though. It's subsided considerably as I've eaten less and emptied, but I've felt so weak that I can't even speak without feeling like I'm going to faint.

I have a little over three weeks left to get my strength up and my Crohn's less aggressive until school begins. I feel pathetic to even say that I would ask for a wheelchair when there are so many other people that need it more than I do, but the walking is going to be the worst I think. That's what I'm worried about anyway. I tried walking in the store yesterday to pick up something before I went to my mother's and I was utterly exhausted by the time I was done, and the stomach was acting up terribly. This is before I even ate anything.

Sorry for more ranting, but I feel so puny right now. I don't even know what to be motivated toward right now...getting better to get worse again? Who knows..It's hard letting go of a past where I was healthy. Just a very low day I suppose. So much for 2008 being productive.
Posted 7/27/2008 5:29 PM (GMT 0)
Have you contemplated experimenting the SCD, Maker's Diet, or another similar antifungal diet to see if your symptoms would improve? Just eliminating foods that don't seem to bother you is not the same. There is a science/logical explanation why these diets work for some people ('fungus'/yeast overgrowth being the etiology of ones' symptoms)...maybe you fit into that category of people and don't realize it yet? One could always hope :) It was that way for me. I hope you find something that helps you get your life back.

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