Dazed and confused

[skinnythai]

dazed and confused

Hello,

This is the first time I've ever posted in ANY online support group. I just found out about this forum the night before last. What can I say, I'm not terribly high tech and I guess I don't like giving my illness too much "air time." But my symptoms have worsened, I've been going downhill physically and emotionally for awhile now and a friend of mine suggested that I try this. The "dazed and confused" title is a reference to Led Zeppelin, of course. I'm a music journalist and a longtime Zeppelin fan. But maybe "sad, angry and hopeless" would be a more apt way to sum up my feelings tonight.

I always had a sensitive stomach but five years ago, I got very sick and was diagnosed with Crohn's Disease. While I wasn't exactly thrilled at the news, once I knew what it was, at least I could begin to treat it. The doctor who diagnosed me put me on Asacol and explained that if I responded OK to that, we wouldn't have to go the steroid route or anything. And I did respond pretty well. For a few years, I would have flare-ups periodically but I was fairly functional and my life wasn't impacted TOO significantly. My main symptoms were diarrhea during flare-ups and constant low energy (which I still suffer from). Being a music journalist and living in NYC, I constantly get invited to concerts and events. It's a great perk but being in my 40s and having Crohn's Disease is very different from being in my 20s and feeling immortal. The irony is that in my 20s, I had much better health but no career, so I never got these invites. Now that I get them, I often have to decline because even though I want to go, I'm not up to it physically! Tonight was a case in point. I was on the list for a show that I'd been looking forward to, the artist being a talented woman who I've interviewed several times. Last night, I felt decent physically -- not great but OK. This morning, I woke up with a bad flare-up. I wound up having to cancel my plans and I didn't go to the show. It was a letdown for me, for the friend I was planning to take and for the publicist who put me on the list.

This kind of thing has been happening to me more and more. Since the summer of 2010 I've been under quite a bit of stress, in various ways... I feel like my life for the past two years or so has consisted mainly of getting from one crisis to the next. It started when I lost my apartment. Since then, there has been a second move, other apartment-related disasters, a broken heart, my parents' health issues and my own health issues. I don't ask to leap tall buildings in a single bound and I don't expect life to be perfect. But I also have a threshold. There is very little joy in my life these days and I don't feel that a life without joy is a life, plan and simple. With some exceptions, my dominant feelings over the past two years have swung between days of depression and depletion (when I stay in bed) and anger (when I act out). My work is one of the few things that has kept me sane -- something I never would have said in my 20s.

Right now, I'm not sure what to do. I feel like a shadow of who I used to be. My flare-ups have become more frequent so between that and not living in my old neighborhood, I am forced to cancel plans much more than I used to. This leads me to feeling angry and resentful. In addition, I'm still plagued by constant low energy and I've become much more prone to anxiety attacks in the last few years. I travel MUCH less than I used to, in large part due to fear of having a flare-up while I am away and not having immediate access to a restroom.

I still take medication daily, although I've switched from Asacol to the generic Sulfasalazine to save money (my HMO sucks). I am also on Cymbalta at the moment, for depression. If I'm having a flare-up, I'll often take Imodium as well. I still haven't had to go on steroids at least but I worry that if this continues, I may have to.

On top of being depressed and depleted from this latest flare-up, I got two emails earlier tonight that further impacted my mood. One was from my Dad saying that his best friend, who had been sick for awhile, passed away this evening. This is very sad and I feel quite badly for my Dad. The other email was from a work contact inviting me to another concert. This one is happening on Friday night and is a concert I'd been wanting to see but didn't think I could get on the list for. My first reaction was, "Wow! That's actually good news. I'll be able to go after all." Then reality sunk in. Why would I think that I'll feel any better on Friday than I do tonight? I probably won't feel better and I probably won't be able to go to the concert, so I didn't write back.

If I had to sum things up, I'd say that over the years -- particularly since 2010 -- I feel like I've slowly had one source of joy after another taken away from me. I feel pretty hopeless these days, like my best days are behind me and there's almost nothing to look forward to. I'm not sure what I expect to get out of joining this forum but if nothing else, I thought it might help to get input from others who have been in similar situations. Most of the general population can't understand Crohn's Disease (or chronic illness in general) until they've been through it.

 

[Astra]

Hiya skinny
and welcome

Where to start? Here goes.
Firstly are you in any pain during these flare ups or is it mainly diarrhea and fatigue?
Secondly, time to get your blood work done, check for inflammation - CRP, check Vitamin B12 deficiency, anaemia, liver function, urine and electrolytes, Ferritin levels, folic acid,
The Full Monty basically!
Then check out our diet and fitness forums here on the forum, including the low residue diet to give your bowels a rest which will reduce the diarrhea
Then check the treatment section, you may need a steroid to blitz the inflammation then maybe another med to maintain.
The 5ASAs like Asacol and Sulpha are ok but you've got to get the inflammation under control first.
Lastly, go easy on the Imodium, ok sometimes but not a good idea long term, our bowels need the natural peristalsis, try going low res instead.
I could blabber on all day! But know that we're all here for you
Hope that dark curtain opens for you and shows some light!
Keep rockin mucker!
Lotsa luv
Joan xxx

 

[JDTM]

Man, oh man... as a fan of live music, both watching and performing, I can relate somewhat -- it must be quite a cruel twist to have the opportunities to get out to see all these shows, but not feel up to it (or feel too anxious to go)!

But here's the thing: It's not going to be like this forever. Believe me.

Keep in mind that Joan is right -- medications like corticosteroids are used to combat and control inflammation, and they can help you get back under control. Beyond that, there are a LOT of other medications out there that can help -- you have lots of options if the first thing you try isn't right for you. Lots of people here have found great success using lots of different means; different diets, medications, you name it.

All of that said, depression will also color your view of all of this, and from what you've shared, it sounds like you've been through a lot, both life-wise and Crohn's-wise. It's good that you're taking medication for depression symptoms. Try to be pro-active when it comes to your mental health -- it will make a big difference. Crohn's is a tricky thing... many things contribute to flares, including diet, environment, genetics, and stress. If you're feeling unwell, sometimes it's hard to come out of it. (I know from experience buddy!)

This forum can be really helpful, and you'll find a good group of people who are willing to offer support and a TON of information. Just know that you're not alone in all of this. As a music journalist, I'm sure that you know that there are also musicians out there -- some of which you may have written about -- that deal with Crohn's disease as well (Mike McCready from Pearl Jam comes to mind). Hang in there, and if you're up to it, keep us posted on how you're doing! And of course, feel free to use the board as a resource and ask questions -- people here are pretty knowledgeable and eager to help.

 

[Astra]

Good un Jesse!
xxx

 

[skinnythai]

Thanks, folks. I'm still getting the hang of this... but yours are the first replies/input I've received and I appreciate them. It's fascinating to me that even with all the good people I have in my life, it's easier to talk about some of this stuff with strangers. But again, you have the benefit of shared experiences. Some of my friends will say, "I know someone with Crohn's" but none of them have it themselves. And one of my former friends wouldn't even speak with a friend of hers on my behalf when I asked her if she (or I) could find out how he got his Crohn's to go into remission.

Just a couple of questions off the bat... Joan, not to worry, I try my best not to overdo the Imodium and not to take it unless I have to. And I had blood work done quite recently and most of it looked OK, which I guess is good. I think I had a touch of anemia but nothing beyond that. I should probably check the diet forums as you suggested, though. Also, I found it interesting that you're not opposed to steroids. I admit that I don't know the details, but the impression I got from my doctor and from a couple of people I know who have used steroids is that they usually cause a multitude of problems while they help another problem. Is it a case by case thing?

On a separate note, it's so nice to see that the people on this forum come from so many different places. And I'm a bit of an Anglophile, so I thought it was cool that you're from the UK!

Jesse, you're absolutely right that it sometimes feels like a cruel twist about getting invites that I have to pass on. I try to keep in mind that at least I GET these invites... on the nights where I feel OK and can go to a show, I do enjoy it and try not to take it for granted. But other times, it is definitely frustrating. I often feel like I lead a dual existence... happening guy who interviews rock stars and gets invited to shows... and depressed guy who has health issues galore and spends way too much time sulking in his cluttered apartment. And I am familiar with Mike McCready! I read a piece a couple of years ago in which he discussed having Crohn's and still performing. I give him credit for doing it.

Finally, it's just nice to simply know that I'm not alone and that you think it won't be like this forever. Believe it or not, I often forget these things.

 

[David]

Hey there and welcome to the forum A couple things:

1. Joan was absolutely correct about everything she said, especially the vitamin B12. All those "routine blood tests" you recently had? Vitamin B12 probably wasn't included. Or do you know that it was? If it was, what was the level? I ask because people with Crohn's Disease are commonly deficient and I have a strong inkling that you are deficient and it is causing a lot of your symptoms based upon what you've said. This is very important.

2. When was the last time you had any testing to evaluate the extent of your disease? Stuff like colonoscopy, CT Scan, etc to see what's going on and if you need strong meds.

Don't ignore what's going on. That your flares are becoming more frequent is a sign post. Make sure you head down the correct road.

Again, welcome to the forum

 

[skinnythai]

Hi David,

I'll have to check and see if I was tested for Vitamin B12 deficiency. I'm honestly not sure right off the bat. But I did have a ton of blood work done at the end of January (just three months ago) as well as a CT Scan. I haven't had a colonoscopy in several years though. Can't say I'm dying to have another one but if I have to, I have to.

I'm still curious to hear more about people's experiences with steroids, especially as regards side effects. I met a guy here in NYC, younger than I am, who was the friend of a friend. He has Crohn's and we spoke about it a bit. I told him I take Asacol and he said that he "takes those like they're candy" and that because Asacol didn't help him much he went on steroids. That presented him with a variety of other medical issues though, such as a rash and mood swings. Eventually, he had to leave NYC and go to his family's house upstate.

I'm also curious to see if many people with Crohn's struggle with low energy and, if so, what they do to treat it. I've suffered from chronic low energy for 20 years or so now -- long before I was diagnosed with Crohn's -- and none of the tons of doctors I've been to has ever been able to figure out definitively why I have it, let alone to treat it. I've pretty much given up on doctors. At this point, in all honesty, I don't even care why I have it. I just want to feel better and if someone told me I could take speed and do that, I might entertain the idea. At the moment, I am trying a medication called Nuvigil which is often used to boost energy. Some days I do notice a bit more energy but it's not consistent... I'm still trying to find a rhythm and there have been some nights (like last night) when I actually am awake later than I want to be, which throws me off the following morning. So my sleep cycle is out of whack.

I just feel really hopeless. I may not be a monk but I have a fairly healthy lifestyle. I resent the fact that most people feel so much better physically than I do and that many people take their health for granted and do things to their bodies that I couldn't do even if I wanted to. This week has been particularly tough... three of my favorite artists played shows, I was on all three lists and I had to miss all three shows. It seems like I'm almost always suffering from low energy and/or diarrhea these days and when I'm not, I'm suffering from anxiety. And all of this is only aggravated by other events. I've forgotten what it's like to feel "normal." I keep going back to Jesse's comment (above) that it's not going to be like this forever. I really hope he's right.

 

[David]

Low energy is definitely an issue for many with IBD. The most common causes are vitamin B12 deficiency, iron deficiency anemia, and/or dehydration. Sometimes they have no idea what causes it

Regarding steroids, we have a steroid subforum you may want to check out if you haven't seen it. There's no shortage of anecdotes there. And of course you're welcome to start a new thread to ask any specific questions you have.

Please let us know when you find out if you had the B12 and what is was (if you're comfortable sharing that of course) as I'm very curious.

Take care bud.

 

[skinnythai]

As it turns out, I went to see my GP yesterday anyway so while I was there I had him do a blood test for B12. Should have the results in the next couple of days.

And I did check out the steroid subforum. In all honesty, it pretty much confirmed my feeling that unless it's absolutely necessary, they're a must-avoid. My GP agrees. There are just too many horror stories related to the side effects.

 

[JDTM]

Prednisone seems to come with a LOT of side-effects, but it seems much less so with budesonide (Entocort), depending on the person. Full disclosure: I initially had what I thought was a very bad psychological reaction to budesonide, but now that I'm a couple months into my diagnosis, I'm giving them a second chance. I'm a week into the full dose, and I haven't experienced any sorts of bad side-effects from them this time around. It's very possible that I was simply depressed from my initial diagnosis and I jumped to the conclusion that the steroids were making things worse. Keep this in mind, and don't scare yourself reading all of the horror stories. (Easier said than done -- I've managed to freak myself out as well!)

 

[David]

Good deal. Get the actual number. Don't let them do the, "You're kinda low but normal" on you.

 

[skinnythai]

Thanks for the tip, David. I'll keep that in mind. If nothing else, I have to say that my GP is a pretty attentive guy so I doubt he'll object to giving me the actual number.

On a separate note... I am supposed to moderate a round table interview of three musicians today... Have been waiting to do this for awhile now. My fingers are crossed that I have no flare-ups, that none of the musicians bail at the last minute and that New York City doesn't see a terrorist attack or an "act of God" today...

 

[Cat-a-Tonic]

Skinny, I'd like to echo what Jesse said. Remission is possible and things can and do get better. I also wanted to add my input about steroids. I was on Entocort (budesonide) for 7 months, and that's what put my illness into remission (and I'm still in remission today, currently taking Asacol as a maintenance med). Entocort isn't as harsh a medication as prednisone, it's not systemic like pred is, and there are far fewer side effects. I think mild dizziness, mild nausea, and headaches were the main potential side effects if I'm remembering correctly (I experienced headaches and that was it). Don't let the prednisone stories scare you away from all corticosteroids. And honestly, I was only ever on pred for a very short time, but I love the stuff - it made me feel incredible. My symptoms disappeared overnight and I may or may not have developed superhuman powers (I did suddenly get the energy to clean my entire house in a single day while on pred). I was never on it long enough to develop any side effects so I only have good things to say about pred. Just my two cents on the matter!

And as the others have said, I think that remission (and flares) is a matter of a combination of things. To try to stay in remission as long as I can, I make sure to exercise regularly, eat as healthily as I can, get enough sleep, take my meds & supplements faithfully, and avoid stress where I can (exercise is wonderful for relieving stress!). I haven't had a flare-up in over a year now. It is possible to feel well consistently for a long time and get your life back! Good luck with whatever you end up doing, I hope you can reach remission soon too.

 

[skinnythai]

Thank you all for the info. First of all, I need to say that I did wind up doing the round table interview on Thursday and that it went well -- no mean feat considering how I've been feeling recently. Work continues to be my solace, although in this case I happen to be friendly with one of the artists who took part in the interview and was even able to talk with her afterwards about my health. She's a lovely person.

Also, i did get the numbers back from my doctor. David, you'll be interested to know that he actually did do exactly what you warned me about -- basically told me I was in the low range of "normal!" But I got the exact number from him, which was 288. Apparently, anything between 200 and 900 is considered normal but that strikes me as a pretty big range. So we decided that I'll begin taking a comprehensive B complex that includes B12.

Jesse and Cat-a-Tonic, thanks for the info about Entocort vs. Prednisone. I had honestly never even heard of Entocort, so it's good to hear that if I do ever have to try steroids that some are milder than others. And Cat, I enjoyed the story about having superhuman powers and cleaning your entire place in one day... I can't even imagine feeling like that!

 

[JDTM]

Entocort is certainly more localized -- it releases in the small intestine, and as a result, there are usually far less side-effects. I don't want to jinx it, but I've been on a full dose for a couple weeks now and I'm not experiencing any side-effects this time around!

 

[David]

Also, i did get the numbers back from my doctor. David, you'll be interested to know that he actually did do exactly what you warned me about -- basically told me I was in the low range of "normal!" But I got the exact number from him, which was 288. Apparently, anything between 200 and 900 is considered normal but that strikes me as a pretty big range. So we decided that I'll begin taking a comprehensive B complex that includes B12.

We're making some progress here, great job getting the number! The problem with the "low normal" is that many (greater than 50%) will still have elevated levels of homocysteine and methylmalonic acid and have subclinical disease (source). I personally feel anyone with Crohn's Disease should get their level above 500pg/ml to get closer to the ideal range.

What is the vitamin B12 content of your complex B vitamin? Around 100mcg?

 

[skinnythai]

Haven't picked up the B complex yet. I'm actually planning to head to the drugstore shortly. Is there a specific number you think I should shoot for??

 

[David]

If it was me, I'd get a 1000mcg B12 AND a complex B vitamin and take both. Depending on what's going on with you, even that may not get you over 500pg/ml but it's worth a try. It all depends on how much B12 your terminal ileum is able to absorb in its current state. What I can pretty much guarantee is that just a complex B isn't going to be sufficient.