Ack! I am not alone!

I was diagnosed with Crohn's last Sunday when my gastroenterologist called me in the afternoon. I should have known something was up. What doc calls you on a Sunday?

You all know the symptoms, so I won't bore you with the details, what I have come to understand is those that suffer with this disease have my undying respect. When people ask me how I feel I tell them, "How would you feel with a bunch of ground glass in your gut?"

I realize that's a bit cranky, but that's where I'm at right now.

I am a writer and author of paranormal romance. My next book will be a paranormal investigator with Crohn's Disease. I do have a blog and I'm inviting you, if you want, to blog about your experience. I'd prefer readers who use books to relax during bouts. I don't care what kind of books you're into, as long as it makes you feel better. I can't leave my url but you can Google my name Louann Carroll and my book Gemini Rising to get to my website or you can email me at carroll.louann@yahoo.com.

Even though I write paranormal romance, I LOVE Dean Koontz. For the last week I've kept his book Seize the Night on the windowsill next to the toliet. Thank heaven for Dean. He's kept my mind occupied while my body does its thing.

I wish all of you good health and I'll be back often. If you check the blog on my website you can read about my experience with Crohn's. At first I thought it was a death sentence, now I know different.

Blessings,

Louann

Hi Louann - Sorry about your dx but welcome to the forum! It would be great if you write a book about an investigator with Crohn's; I'm sure it would be quite good and the more people that know about this disease, the better!!

- Amy

Hi Louann, welcome to the forum. Can I ask what exactly paranormal romance is? I am thinking along the lines of the movie "Ghost" but I'm not sure if that's correct.

I definitely do a lot of reading when I'm not feeling so well. Over the summer I had a lot of bad days and I read the entire Lonesome Dove series. Your book about the paranormal investigator with Crohn's sounds interesting. I believe you are able to post links after you've had 15 posts, so please do share the link to your blog when you have enough posts.

Hi Louann,

I love reading Romance novels, not just when I am sick! Welcome to the forums, I hope you find lots of information here that helps you with your illness and book!

I figured I would add your website link for you http://louanncarrollbooks.weebly.com/a-shadow-of-time--coming-winter-2010.html

Thank you!

It's so nice to find other people who have this damn thing. I was so shocked when I got the diagnosis. I'd been sick for so long and I thought it was just anxiety or panic or something.

And you're right. People need to know about this. After crying for the first few days I decided I'm not going to be ashamed or miserable. I'm going to fight this thing with everything in me. And I'm going to tell people about it. I had no idea it existed.

I want to hear your stories and I want to share them. You don't have to worry about spelling or grammer. I will edit them. Since I can't post my link, you can leave them here and I will add them to my blog. You don't have to use your real names.

Paranormal romance is well, romance with paranormal stuff in it. I think I would have died this week without my books (and my husband who has been wonderful). Sheesh, what a wake up call. Now, if I could just get a good night's sleep without this freakin pain in my gut.

Best blessings to all of you.

Louann

Thanks Nica

Oh, hey, Nica! Thanks for posting my link. Now for the stories....

Trust me, writing about your experience will make you feel better.

Louann

My Crohn's story is in this thread somewhere... basically I am 12 years into this, and been on almost every medicine for it.

My story is ongoing, partly because I'm still undiagnosed. My GI thinks Crohn's or maybe microscopic colitis, but so far all of my (many) tests have come back normal. I'm currently on Entocort and it's working well for me, so I likely do have IBD, but just don't know the specifics of what & where it's located, etc. I've been going through this for just over a year now without a diagnosis, and my GI wants to stop the tests for now and just try to get me some relief/get me into remission.

Oh, Nica. I've been on Prozac, Xanax (which I quit cold turkey--not a good idea), and Elavil for pain. I'm pretty sure I've been battling this for about 5 years. All my life whenever I get upset, I get these symptoms (though none as bad as this time around). No one ever thought to check me for Crohn's or UC.

I don't want to use anyone's stories without permission. It would be great if you could send them to my email with something that says, I give my permission to Louann Carroll to post these stories in her blog. I'm thinking of creating a separate link for Crohn's stories.

I'm off to check out the rest of the forum. I had a miserable night's sleep last night. Too mouch pain.

I have a question if anyone can answer. My doc has me on Lialda and I was wondering, how do you know you are in remission? How long do you take it for? He always seems so rushed that I hate to ask questions. I mean, is it something you take for the rest of your life?

Most people have to take something for the rest of their lives. It helps keep you from going into a flare up.

We all strive to maintain remission, or get to remission which basically is no symptoms, or symptoms we can live with.

Most of us who have had it for any length of time have periods of flare and remission. I personally get what I call "mini flares" quite frequently, its not the full blown omg ack but its doing something. I also have quite a few extra intestinal issues, so for crohns to be truly in remission those would not act up either (so they say).

Even if your GI seems rushed make him answer your questions. If you are not comfortable with him maybe go get a second opinion. This is a doctor you will see almost as much as your GP, if not more. I feel like being comfortable with my doctors is pretty high on the list for me. If I am not comfortable I will not tell them everything going on, and or won't follow instructions (then not tell them either!). They can't help you if you can't be open with them.

Hi Louann,

COOOL! A fellow writer with Crohn's (but one who is actually published!). I've been writing science fiction for a long time, and actually had some stories published a long time ago. I'm in a writers' group that is fabulous. We've had a number of successes, including one gal who's written a couple of paranormal chick-lit, I guess you'd call 'em. Mindy Klasky is her name. You can Google her for her website.

I hope you're feeling better -- the glass in stomach is a great (awful!) metaphor. My best description would be sitting on pointy stick, I guess . . . Fortunately I'm pretty much in remission but had a flare up only a few weeks ago and had to up the budesonide (darn it).


Sandy

Lesseee,
Currently on asacol, azathioprine, Rowasa, folic acid, vitamin D, calcium, and budesonide.

Plus a bunch of other things for other problems (sigh).

Hi, guys: I've been having these spiky like pains that just shoot through me and extreme joint and muscle pain. I've been on the Lialda for three weeks and although I'm better, I'm certainly not in remission. Doc wants to put me on Remicade, but I'm frighted to take it. Actually, anxiety is pretty high right now because I don't know what the next day will bring.

I'm staying away from the foods that bother me, which is just about everything but crackers. I keep hoping the Lialda will kick in more, but the doc says that might be difficult because I have ulcers on both sides of the colon and into the entrance of the small bowel.

Sandy: Great to meet a fellow writer! I thank God for being able to write because when I'm writing, I don't think about anything other than the characters on page. Sci-fi, paranormal romance is hot right now so keep chugging away. If you love the craft you will find a home for your work.

Louann

Hi Louann,

I understand being afraid of remicade. I was too. I guess it comes down to what quality of life you have right now, being afraid of tomorrow is no way to live. My best suggestion is to talk to your GI doctor about your fears, get into a real discussion with him about how you feel about possible treatments and how you are feeling right now.

You might want to post this on the treatment or general IBD forums to get more responses.

To get some relief now you may want to go on a clear liquid diet for a few days (2 or 3 at most) to give your guts some time to rest and maybe heal. Also might want to think about boost and ensure to help keep your calories and Vitamins up.

Ah, Nica. Never thought about Boost. Thank you.

Yeppers! Thats what I am here for to help!

I'm wondering if lack of B12 might be the cause of my emotional difficulties. I cry a lot, am tired all the time, and everything seems so overwhelming. Is it possible?

It is possible that b12 is causing the tiredness. It is also possible that you are tired and cranky cause you feel like crap and are in pain. Its also possible depression is rearing its ugly head.

b12 is digested in the small bowel ( I am not positive where I don't have small bowel issues I am sure someone else can answer that) so if you have active Crohns in that area b12 is an issue. Also not getting enough of the stuff your body needs to function like vitamins can do it.

If you are tired and can possibly do it, rest. Take the time for your body to heal. I have found if I push myself too hard when Crohns is rearing its ugly head it makes it so much worse.

If you are on pred now that can cause lots of issues.

How is the new book coming? I can't wait to read it. I might have to buy your other one on my kindle soon too!

Hi, Nica: I'm just finishing my second pass edit on A SHADOW OF TIME, a paranormal romance, then I've just finished REDEMPTION who has a detective in it who's going to have Crohn's in the next sequel. Then of course I have to finish Gemini Rising's sequel, and in the meantime, I have to heal, which is a bitch.

I have ulcer's in my small intestine, specifically in the illeum (sp) which is where B12 is absorbed. I called my doc (regular not GI) and asked her to look up my hemoglobin which was 6 when normal is 12-14, then she says I shouldn't take iron because that might upset my system and since she didn't know anything about Crohn's, it was better that I talk to my GI doc. That was on Monday.

So, being a self starter I went and talked to my pharmacist who recommended B12 and iron. I started that yesterday. Then, in the afternoon, I realized I'd been having a pity party with myself which is what probably had me crying all the time. Once I recognized the problem I perked right up.

You're right. I do need to rest, but I have so many commitments. However, I do realize I need to take the time. This whole thing just sucks.... Thanks for replying to me. I appreciate it.

Louann

P.S., Sometimes this feels like a lonely disease.

Just my opinion, but it really seems to me like heightened emotions are a symptom just as much as diarrhea and nausea area. When my symptoms flare up, I find I cry frequently for little or no reason. I'm not like that when I'm feeling relatively okay. So don't feel bad about having a pity party or crying all the time, it seems to just come with being ill.

Okay, so the last three days has taught me that iron is a nono. What a flare on top of a flare. Eh, I think I'm going to try Humira. I'm off to check out the thread.

Thanks, Cat. Maybe you're right. My husband says I'm having a hard time accepting the reality of this thing. Perhaps he is right.

Louann

What is a fistula and stricture? I have this thing that is not a hemmy or maybe it is, but it's large and painful that feels like a lump about an inch long that extends toward my personal parts. I also have what feel like large vericose veins that extend outward, maybe from straining? On a bad day, the pain is horrible.

I've also read that you should try as best you can to go into remission. I'm on Lialda, 4 tabs, and I still have pain and some blood, but my bowel movements have lessened. Is this remission? Last night, I had the worst gas I've ever had. You would have thought a volcano was ready to blow.

I'm very confused as to what remission is.

carrollco said:

I have a question if anyone can answer. My doc has me on Lialda and I was wondering, how do you know you are in remission? How long do you take it for? He always seems so rushed that I hate to ask questions. I mean, is it something you take for the rest of your life?

Click to expand...

I am on Lialda and have been for the past year. I had relief on my first round of it unfortunately my symptons came back and worse so I now take 2 of those horse-sized pills 2 times a day and I have absolutely NO relief.
I also share your lack of sleep because of the pain. GRRR.

Hi Louann
and welcome

My gastro explained to me that remission means no inflammation. I was checked on 29th Nov, he palpated my tummy and said he couldn't feel anything, no swelling. It didn't hurt me neither. Doc, therefore, said I'm in remission. I have no symptoms or pain.
However, I've had a hell of a year, hospital and 10 months of Pred and Entocort.
Before this relapse I had 5 years of remission, so it is possible to get there eventually.
Sounds like you have a hemmie, sounds like mine!
Strictures are scarring caused by inflammation over the years, I have tons of them! When I'm inflamed, these start to narrow, hence the hospital visit back in Jan, I was blocked. You'd know about it if you were blocked! The pain is unbelievably excruciating!
Chack out our Remicade and Humira Clubs, lots of people have had success with these.
Hope you feel better soon, if not, go back to docs, no need to be in so much pain, lots of good meds out there.
lotsa luv
Joan xxx

carrollco said:

SNIP...
I have ulcer's in my small intestine, specifically in the illeum (sp) which is where B12 is absorbed. ....

So, being a self starter I went and talked to my pharmacist who recommended B12 and iron. I started that yesterday. ...

Click to expand...

The interesting thing about B12 absorption is that taking extra oral B12 in the presence of distal small bowel inflammation is often not productive. At another extreme, I have "lost" my distal small bowel, cecum, and a small portion of the ascending colon and MUST take B12 via injections. It is important to have the proper blood assays to determine if we are B12 deficient. The shots are trivial and are self-administered or the wife takes charge. And the results are dramatic if low B12 is the issue. Read about B12 and its role in the proper production of blood cells - anemia is often a sign of many issues - B12 deficiency is a contributor.

I love this site. The people are tremendous. I am in a new phase of CD - I am forced to change meds "real soon now." Best wishes for the Holidays. :holidays:

Well, after my B12 shot, I'm feeling pretty darn good! I must add, the results are DRAMATIC. I still get tired toward the end of the day, but I do feel so much better. Of course, no one is going to palpate this tummy for awhile. I'd kick anybody who tried.

I'm still taking the Lialda and I think it's working. The doc gave me Iron which sent my whole belly into a tailspin. Talk about sick! Blegh. Cramped up like crazy until the stuff was out of my system.

Thank you guys for taking the time to read my troubles. Nica has posted her story on my website and if any of you want to share yours, I'll post them too. The more we can bring this rotten disease to people's attention, the better shot we have at finding a cure.

As I said before. I stand in admiration for all of you. Especially the young ones.

Louann

Just came off a horrible reaction to Lialda. Stomach blew up, severe pain, nausea, etc. Now I'm off everything. Looks like Humera is next. I guess I'm 'sensitive' to the drug in Lialda.

Oh, well...

Hi Louann,

Sorry to hear the Lialda turned against you. A Google search tells me it's a version of mesalamine, so check to see if that ingredient is any drugs they want to give you in the future.

Have you tried any steroids like prednisone or Entecort? They can have bad side effects (prednisone is worse that Entecort), but Humira and related drugs can have pretty severe (though rare) side effects. I've been on the budesonide (main ingredient of Entecort) for years, and though it's made me depressed, it's done wonders keeping the Crohn's at bay.

Entecort is a special "delayed release" version of budesonide, that works only in the ileum and ascending colon, so if your disease includes that area, it may be the drug for you.

That's one of the complications of Crohn's -- it's not just the "how bad" but the "where is it" that needs to be taken into account. Oral prednisone is good for disease anywhere because it just gets into the bloodstream generally. But that's the bad part too, because it also can have side effects everywhere.

Entocort is more localized, as are some of the versions of mesalamine. Cortenema is an enema with hydrocortisone, and that's more for rectal and sigmoid colon disease -- though it does get into the body more generally and has some of the same side effects as prednisone.

I take budesonide (main ingredient of Entecort) in a mesalamine enema each and every night (oh boy), because that's where my disease is. Seems to work.

Hope this helps -- rambling a bit, but I've learned a lot (way too much) in 40+ years of this disease.

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid

I am so PISSED! I called my GI doc today because last night was another horror story of cramps, pain, straining, anxiety, panic, and crying because I hurt so bad. So, the office is closed and I get the on call doc.

He starts yelling at me about where my Crohn's is and I say, uh, I'm not sure. I know the doc said I have several ulcers and one is in the illeum but I don't know where the others are.

So he screams at me.... "You are SUPPOSED to know these things!"

I say, "Well, hell! Nobody told me the ulcers exact location!"

He says, "Haven't you had a consultation with your GI doc?"

I say, "No. He's only talked to me over the phone and most of the time I'm in so much pain I don't even remember what he said!"

Crap. All I want/need is some freakin pain relief. I haven't slept in days.

So then he says, "It's not the Lialda. You need an enema too. I'll call you in a prescription and if I go by the office today I'll check your history."

End of phone call.

I live in the foothills and have hardly any GIs to chose from. I am so pissed right now and hurt so bad.

This disease sucks.

Wow! That sucks What a jackass! I hope you can find a way to mute the pain, though.

On call Doc's are at a severe disadvantage...

...creating a HUGE disadvantage for you, the patient.

My experience with one "on call" doctor was horrific as well. They don't know you from a door post. They have no information available at their finger tips. It is really a disservice for them to be called "on call." They should be called "just a strange doctor who doesn't know you or your history" and good luck for all that is worth.

My best solution was to just enter the ER (nearly in collapse) and hope that the attending physician is scared enough of your issues to get hold of the on call who will then realize you are in the ER and contact your "knowledgeable" personal physician.

My luck, the first time I took this approach I found the ER doctor to be an internist with significant respect for the issues of IBD. He pushed hard for answers right away.

"On call" means nothing to the patient. You start over from scratch with the"on call" people. In order to deal with them, it is probably important for you now to become more intimate with the "status" and "description" of your disease, the affected areas, and even some technical aspects of you radiology studies, blood assays, and any other testing that has been performed. Get this in writing so you or someone who is near by can read the details to the "on call" stranger.

Getting your inflammation under control is goal #1. Even if it is on a drug or treatment that is "not ideal." You deserve a better life experience.

Receiving some level of normal rest and physical stability is essential. I depend on all aspects of support from the physician for treatment of my condition. Physical and emotional.

Finally, going to the ER, although sometimes a slower than desired path to relief (may be several hours before anyone commits to doing anything that actually provides relief), often gives you the definite impression that your issues are being handled. Talking to some "stranger" on the phone is frustrating and provides little relief - much less supporting you emotionally as you explain the "universe you live in" to this stranger.

We can't help but feel your pain and frustration - many folks have dealt with "on call" physicians at sometime in history. They aren't even a last resort. They are like starting over...

My prayers are with you and your rapid healing.

jim

An enema? What kind of enema? Gad, what an idiot. You just told him you weren't quite sure where the disease was.

And how does he know the Lialda wasn't the problem? People have allergies to all sorts of medicines.

I hope you can talk to someone at your GI's office who can tell you what's going on, and give you some APPROPRIATE medicine for it. Maybe that should include a steroid of some kind, till they can get things under control. There's no reason for you to be in so much pain. If they did a decent job at the colonoscopy and have all the records, then there's no reason to get you on something systemic till it gets under control.

I hope you can get a decent GI physician soon!

Sandy

I am so much better. They called in an rx for an enema that has helped tremendously. I have an appt on Wednesday. The on call doc was right. I may not have liked what he said, but he made the correct diagnosis and got me on the right stuff.

Thank you for your concern. I was so mad and scared. The ER would have been my next step.

I am thankful for the relief you have found. I hope this is just one of a series of breakthroughs for you. :biggrin:

Jim

*Now on tapering dose of prednisone anticipating workup for Remicade or Humira in early Feb.

Louann, I'm so glad it worked out!!!
Sandy

Oh, jeepers. It's like the Lialda. It seems to work for a few days, then BAM, back with mushy bowels, slight fever, emotional, blegh. Saw the doc on Wednesday and he said the plan was if this doesn't work, Immuran is next. I have no idea if I spelled that right. The enema's have helped with urgency and straining though. I'm going to stay with it awhile and see how it goes.

I have another question and if anyone has an answer or similar experience, I would appreciate input. While I used to have diarrhea on a daily basis (can't count the times I would have to go) now something different is happening. I will go 2-3 days without a bm, then have one really bad day with diarrhrea, then it starts all over again. Is this part of going into remission? I forgot to ask my doc on Wednesday if this is normal.

Hiya Louann

I personally don't think this is remission, I believe you could have some inflammation which in turn is causing strictures to narrow. A sure sign of this is constipation. Then explosive diarrhea when the narrowing opens a little. Another sign of a blockage is projectile vomiting, there's no-where for it to go you see, either straight out or the other end! This happened to me last year, but I ignored it for too long, I was blocked and it turned nasty and infected.
Keep your eye on your temp and if you vomit, go to A&E. Or persist with your doc.
good luck
xxx

I love writing to here little. A day in life of someone and toilet.

Slowly fluid crept back tube into her mouth, quick spite out the tea with sour taste left behind and ran to bathroom. Take two steps that time, reach for handle to push door open when out walk someone. She push pass them, slam door shut and was in for good hour or more. Not sure weather to vomit or pull her pj's bottom down first. She choose to sit and use bin for outlet flow of liquid.

Pain in her stomach was under denied cripple rock back and forward well doing her thing in toilet. She grabs all bath foam, shampoos and shower gels bottles reading them all before least four times. Many of the labels, she start to know of by heart now. Finally the cramps and vomit seem to come to stop so she reach for Andeax wipes which more suitable to use that present time. After quick tidy up with toilet brush, Detox wipes and glance in mirror wish she was someone else. Pale, thin face, with dark rings round the eyes, dull lifeless hair try in hard shine with bulb glow above.

Josephine: That was really good! Sounds like someone who's been there. Astra: I was afraid of that. This is totally new. Well I see the doc soon and hopefully he'll have more answers. I'll keep watch on the temp.

So it's three days without a bm, temp holding steady at 99, no vomiting. I called the doc and he told me to be patient. Uh, okay. I'm passing gas, but nothing else and I'm uncomfortable. I keep walking around, doing situps, hoping this too shall pass. Should I be worried?

Edited to add: I do get these wave-like cramps that are horrendously painful.

Hi Louann

Gonna be blunt here, stop messing about with enemas and obviously the Lialda isn't the right med at the mo. Lialda is a preventative med, like Pentasa and Asacol, this med will only work if there is no inflammation present. It works by inducing and maintaining remission, ie no inflammation.
But, you've got to get the inflammation under control first!
Cos your CD is in the ileum, Entocort (budesonide) would be perfect for you, unlike Prednisolone, this drug is non systemic, which means it only goes to the small bowel and the beginning of the large, not the whole system. You only need to take Entocort for 8 weeks at 9mg, then one month at 6mg and one month at 3mg. That's all.
It is a steroid tho, but don't worry about the side effects, they are minimal. Once the inflamm is under control, then think about the biologics or an immuno suppressant, and Lialda to maintain.
If you haven't had a BM for 3 days, there could be narrowing, Entocort will reduce that swelling, so give your doc a ring, get some relief!
love lots Joan xxx

My GI wants me to go to Imuran (sp). He doesn't like steroids. I have an appt first part of February and he wants me to stay on the enema and Lialda until then. In the meantime, I've just decided to not eat or if I do eat, just really small amounts several times a day. He's not concerned about the fever unless it spikes and said to come in right away if I start vomiting.

Hi Louann,

I agree with Joan -- I think Entocort would be perfect for you. It doesn't have the many bad side effects of prednisone.

I also don't like the way your doctor seems so blase about your condition!

Are you drinking enough water, BTW? I've found that if I forget to drink enough, I have a difficult time in the boy's room, as they say.

Sandy

Jerk! Before I joined this forum, my mother, who is very supportive of me asked me what Crohn's Disease feels like. I said something very similar to your earlier comment about glass. I told my mom that it often feels like I'm digesting glass shards.

Eh, had a partial stricture. I finally got it all out last night with blood, clots, etc. So, I called the doc again. Still wants to stay with the plan. Fever broke and I feel so much better. I always feel like I'm bothering him--I don't think it's his problem, but mine. This is still so new to me and I have so many obligations I have to honor. Sometimes it's so overwhelming, which I know you guys understand--but most regular people don't.

I'm learning to put limits on myself--and how to be more forthcoming with my doc. I have to stop being so afraid and to meet this disease head on. I seriously did not have all these problems before the colonoscopy. I mean I had blood, urgency, etc., but not the pain I have now or the stricture problem. So many of the symptoms are new to me and I don't know if some are in my head or if they are real. For so many years they said it was irritable bowel caused by anxiety so it's hard to put old beliefs to rest.

The clots last night scared the you know what out of me, but as soon as everything passed through, the bleeding stopped. If it starts up again, I'll head to the ER, but for now everything seems OK.

Now I'm off to a board meeting where I'm just going to have to tell them about this stupid disease. Then I'm telling my editor and publisher. After that, I'm going to take a nap. I deserve one.

Like you, I am newly diagnoised and have been experiencing new symptoms with each passing week. I feel like things all changed after my colonoscopy, as well. I initially went to the GI, because I was passing mucus once or twice a week for a few months. That was all I was experiencing at the time. Then, after the colonoscopy (small/shollow ulcers and slight inflammation were found in my ileum & colon), pain started, more trips to the bathroom, urgency, etc. So, I can completely relate. And I probably don't know much more than you do about the disease, but I do know you shouldn't be suffering so. I have been having daily abdominal pain, and I emailed my doctor to notify her though I said I figured it came with the territory. She called me back immediately and scheduled testing. This is what your doctor should do for you. If something isn't working, he/she needs to change it up and/or investigate it further. So, I suggest for you to get a second opinion even if it is out of the way. Your health is #1, and if you need to travel an hour or more to get good health care, then so be it. Keep us posted.

PS - I LOVE paranormal romance - Have you ever read Kate Brallier's books? She only wrote two, but they are my favorites!

Hi, Jill. They are starting me on prednisone tomorrow. That really depresses me as I'd hoped not to have to take it. My mom took it for something many years ago and had a really bad reaction. Eh, I said I'd give it a go because he said I needed something to bring down the inflamation like now.

No, I haven't read her books. I'll have to check her out. I write paranormal romance because I've always loved the genre. It gives you so many ways to entangle a story. I have a new book coming out this spring called A Shadow of Time. I hope that gets as good a review as Gemini Rising.

Well, I'm off to commiserate with myself over this unfortunate turn of events. I know I should think positively, but dang, I just don't want to take that stuff and I feel so out of control with this damn disease. I just want my old body back. I think I'm in mourning.

I oughta be slapped. I had no idea how sick I was until I started taking Prednisone and got off Lialda. I had forgotton what it was like to have energy. I had forgotten what it was like to play with my grandchildren on the floor and not have pain. I had forgotten what it was like to simply rise from the couch without groaning because every joint ached with the fierce reminder of Crohn's. I didn't think it was every going to be possible to be 'me' again.

By the fourth day of Prednisone, my aches and pains are gone. I have more energy than I need, and yet, I don't have trouble sleeping. Granted I talked the doctor into a low dose, but already it is working.

Turns out I was highly sensitive to the Lialda which made my Crohn's worse. Lialda is like aspirin and if you have trouble with aspirin you can have trouble with Lialda. The drug made me bleed, and already after being off Lialda for four days, the bleeding has slowed considerably.

If Astra hadn't given me her blunt advice, I'd still me moaning about my lot in life. So thank you. I took the ball into my hands and although I can't be on Prednisone forever, I'm going to enjoy the energy it has given me for the short while.

Oh hun, your post makes me so bloody mad! These stupid doctors haven't a clue and "care" is not what they do in hospitals these days. :mad2:

I went in hospital last year for some tests on my gut to see why I am unable to eat without being very ill. I was in for 7 days of hell in that place. :bat:

I was placed on a diet of 2 elemental 028 drinks a day. 2! I was starving to death on that hospital ward and unless I repeatedly asked for them I didn't even get my 2 drinks! :yfrown:

Care, is what they call it.

Hun, you are not alone in the crap treatment you've received, but it doesn't make it acceptable, in fact its sickening. :thumbdown:

Wow -- your story reminds me of the time before I had my diagnosis. Nobody could help, no sleep, just pain, here and there a bag of fluids in the ER that I crapped out immediately and no doctor taking you seriously.
I am thinking you need to find yourself a GI who knows about Crohn's and one that you trust and can talk to.

Hiya Louann

I'm so happy you're happy again!
I am blunt, and I don't know if I come across as arrogant, (I'm not) but only cos I endured 15 years of a crap dx, (IBS) and being fobbed off with everything from depression to eating too many Mars Bars! So I know how that feels.

Enjoy the Pred, it saved my life last year, and I was on it for 10 months, I loved the energy and the wizzy feelings! But I'm weird like that!
I went on Entocort 3 weeks ago, cos I started to flare, with lots of d, but now I think I had a bit of a bug cos it halted quite quickly, and I didn't have abdo pains, so dunno?
But................ I'm in remission now! And you'll get there too!
xxxxx

Thanks to all of you. I had a bad day today, but it was nothing compared to how I've been feeling. I cannot believe I don't have pain. Truly, this is miraculous.

Update: Prednisone isn't working. I feel wonderful and have energy, but now I start Imuran tomorrow. Doc said my feeling of well-being is false. I said, I don't give a crap if it's false or not, taking my Prednison away will start WW3.

I lost another 10 pounds in one month so I guess he's right. He says I have one month to start showing improvement or I'm off to join the Humira club.

In the meantime, my false sense of energy has allowed me to get halfway through the sequel to Gemini Rising and I entered my other book Redemption into a contest AND I finished the editing of A Shadow of Time. So false it may be, welcome it is.

Louann

Hiya Louann

I'm sorry but I find this very hard to believe, after 11 days?? Pred hasn't even had a chance yet! It's gonna take a few months to get going, this is just my opinion but I'd stay on it for a while longer, you need to save the 'big guns' like Humira when all else has failed, the Aza will kick in and compliment the Pred ,so that it's in your system when the Pred is stopped, don't stop it yet.
It is true that Pred can/may mask symptoms but dunno about false sense of well being, it could be working, I think he's talking broken biscuits here.
It's your shout, I know what I'd do
Good Luck
xxx

I'm on pred and 6mp now. I mistakingly thought 6mp and Imuran were the same. He's concerned about my weight loss and the fact that I keep running a fever of about 99-101.5 daily. I've lost 30 pounds since November. Eh, I'm staying on these meds for as long as I can. I don't want to jump to Humira until I absolutely have too.

Update: Still on 6MP and waiting for it to work. It's been 7 weeks so far. Am taking Prednisone 40mgs and still no relief. Fever stays at 100 to 101 daily and will spike to 102.5 after eating. However the ugency is better and so is the bleeding. We had a death in the family so I haven't been around. I'm thinking the stress was what made my condition worse, but I don't know.

I have a question, my doc says that Crohn's makes you sensitive to certain foods however I've found that I can eat something one time and it doesn't bother me and another time if I eat the same thing it will make me deathly ill. Is that normal?

Also, does anyone have sugar cravings?

Lastly, this is the first time this happened to me. Yesterday while having severe cramps and D my mouth flooded with saliva and I started vomiting. Heck, I didn't know what to do since it was coming out both ends. This lasted about 15 minutes and as fast as it came it was gone. Of course I was exhausted, but I didn't feel nauseous or anything.

I go back to the docs on Thursday for my latest blood test results. I'm hoping something is getting better somewhere.

Hiya Louann

good to see you again, sorry you're still going thro the wringer tho!
Still not happy with the vomiting neither, this needs investigating more, something is going on, not sure what tests you've already had, but insist on some more with the doc.
Regarding sugar cravings, there's a thread on this

http://www.crohnsforum.com/showthread.php?t=14423&highlight=sugar+cravings

hope you feel better soon
xxxx

carrollco said:

I have a question, my doc says that Crohn's makes you sensitive to certain foods however I've found that I can eat something one time and it doesn't bother me and another time if I eat the same thing it will make me deathly ill. Is that normal?

Click to expand...

I don't know if this is normal, but I have experienced this, too. My issue is pasta sauce - some days it sits absolutely fine with me, other days it doesn't agree with me. It makes things even that much more challenging.

I hope 6MP starts to kick in soon and you get some relief! Let us know how Thursday goes.

It could be the garlic and Oregano in the Pasta Sauce Jill that has a bad effect. I've just had some, boy I am swelling up like a balloon and feel dreadful! But I don't always feel this bad.

Garlic and Oregano are very powerful anti fungal. So if you suffer in any way with a fungal or a parasitic infection you will get a Herxheimer Reaction from eating these. The reaction would vary depending on the strength of your immune system at the time you eat the pasta sauce. Some days when you're in top form you might not even get any symptoms because your body can deal with the die off, but other days when you're already over loaded with toxins and stress, your body will be unable to cope and you'd get a Die Off reaction, which mimics an allergy reaction.

Herxheimer Reaction- dang! Quite a reaction. Garlic is my anti fungal of choice. I'm going to watch for this.

Hi Luann- I agree with Joan (as usual!) that you need to get that vomiting checked out! That is usually a bad sign that something is going on!

As for food - I think most people on here have mixed results with the same foods. It's the unbearable unpredictability of this disease!

Hope you start feeling better soon, and that the vomiting doesn't turn out to be anything serious.

- Amy

Eh, I went into the docs today. Hemoglobin is way down and white blood cell count is way too high. Doc said it's time to try the big guns so I get my TB test on Monday and as long as it's clear he wants me on Humira before the end of the week. I was disappointed to say the least, but I'm on high doses of Pred plus the 6MP and I'm no better than I was two months ago. So.... I guess I'm joining the Humira club.

I know the the "big guns" sound scary, but if it helps you to feel better and achieve remission, it is worth it. Keep us posted!

So, just to keep up to date. Fever is still at 100-102. I vary between constipation and diarrhea though doc says the constipation is due to swollen intestines. Red blood cell low, white cell count high. Lotsa pain. Monday I get the TB shot and I'll blog/post what happens this week.

carrollco said:

It's so nice to find other people who have this damn thing. I was so shocked when I got the diagnosis. I'd been sick for so long and I thought it was just anxiety or panic or something.


Louann

Click to expand...

i relate, im glad you have something to immerse yourself into, i found it harder to read since crohns thought before hand i was always reading, so i envy that. The last few books ive read have all been textbooks and manuals for programs which might not help: (

good luck with your next book

Reading is hard when you're in pain. Writing is doubly difficult and the pain with Crohn's is horrible.

I'm four days into my first Humira injections (4 in all) and am noticing a distinct drop in my temperature. Instead of running the usual 100-102 I'm running normal to 99. Which is a FIRST since February/March.

The shots were a little painful but I handled them like a pro. Of course I had a complete breakdown that evening once the realization of my new condition hit home. I guess taking shots instead of pills made me really realize what is going on with my body. I'm really at the place where I can't take anymore pain.

My doc received four 'free' genetic samplings (blood tests) for his Crohn's patients and I'm one of the lucky ones because Crohn's and UC run in my family. Like mother, sister, daughter, and two sons. It's called Promethius so I'll update on that when I get the results.

Humira is expensive, but I have a five dollar co-pay thanks to the pharmacutical company. We'll see how long that lasts.

Take care everyone! I'll keep you posted.

Louann

I hope Humira continues to bring down that temp and gets you felling much better soon!

Thanks for the update! It's great that you get the low co-pay for the Humira. I hope it does the trick!

I understand about the shots making it seem more "real". Somehow a shot is more "serious" than a pill, right?

Great too that you get the Prometheus no charge. I have always had great insurance, but twice I had the test and twice it wasn't covered. Let us know the results. They are not foolproof so don't be discouraged if they come back inconclusive.

- Amy

One week update. I haven't had a fever in 3 days and NO PAIN in three days. A first since November. I hesitated to post it in case something happens. But, in my opinion, Humira is better than any other drug they've put me on.

AmesLouise: They ran all kinds of tests colonoscopy, blood tests, poop tests, etc., and it all came back consistant with Crohn's. Had a mess of ulcers in my colon. I'm hoping the Prometheus shows something so maybe I'll have an idea if my grandchildren will be affected. My mother and sister both had diverticulitis and UC. My daughter has UC and so does my son. Eh, what are you going to do...

What does concern me is how many people have this disease that can't afford drugs like Humira. Before my insurance agreed to pick it up the cost was 6k for two shots. I was like, "SIX THOUSAND DOLLARS?"

I thought the Rx tech was going to have a fit. I didn't give a crap if she did or not. (Mighta been the Prednisone talking, but what the heck.)

I mean why should people have to suffer when something that can help them is located in their nearest pharmacy. I mean that's torture. How can you put people on Prednisone and all that other crap when something is so readily available? As I know most of you know, Crohn's HURTS, is UNCOMFORTABLE, and makes your life MISERABLE.

Like I said before, I have one book with my editor, just finished another, have one more sequel to write, then my little detective character is going to develop Crohn's. The first page is already alive in my head.

No one should have to suffer this way.

Sepsis

Whoot! I remembered my sign in name as Carrollco! Update is I'm doing fine, fever is gone, sepsis is gone, can start Humira again next Thursday. Doc said to monitor everything closely and if my fever starts to rise get to hospital or docs ASAP.

For the newbies I'd like to add: I was a newbie in November of 2010. My father was German, my mother German Jew. I was raised with a work ethic you wouldn't believe. If I was sick, so what! You go to work. If you feel sick? Don't bother the doctor. It will be fine. Stop whining. I've worked with a fever of 104, with a flare up of Crohn's running to the bathroom 27 times. (the worst ever experience) I don't call the doc unless I have to or one of the moderators yells at me.

That said, this time I could have lost my life. Sepsis is nothing to play with. My doc understands my reluctance to 'bother' anyone, but said that with Crohn's bothering is a must.

So if anyone out there is like me, don't risk your life. Don't put your husband and children through hell because you were brought up 'not to complain.' I am disappointed in myself in that I compromised my life because of an ethic that has no placed with Crohn's.

It turns out my sepsis was caused by an opportunistic infection that attacked because of the Humira and 6mp I'm on. When you are on immunosupressent drugs you must be vigilant for infection. I learned my lesson the hard way.

I don't know if I can post a link or not yet, but here's my blog if anyone wants to read it. If it has to be removed, that's OK too. The first two blogs are about my latest experience with sepsis.

http://louanncarrollbooks.weebly.com/blog.html

I just wanted to give a heads up on Mercaptopurine. I went to three months from one month blood tests and developed meylosupression. (sp) Make sure you get your blood tests. I'd gone from one month to three months and it happened sometime during those three months. I also posted this on the treatment section. I'd read about meylosupression, but had no idea it could be so painful.