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My story, plus some questions

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AgB621

Guest
I'll try to keep this as short as possible...I'm a little squeamish about talking about some of this stuff, but I figure if there's one place I can, this should be it, so I'll try.

I'm 21 and female, and I was recently diagnosed with Crohn's. I had taken antibiotics for a sinus infection, and experienced some stomach aches, nausea, loss of appetite and eventually intermittent diarrhea over the following 5 or 6 weeks until I ended up in the ER with severe nausea, diarrhea every 15 minutes, and the worst stomach pain I'd ever had in my life. At the hospital, they found my white cell count was through the roof and did a CT which showed nothing. The following day I went to a gastroenterologist, and while I was there I developed a high fever. The following day, I wasn't doing much better so they hospitalized me overnight and did a colonoscopy.

The colonoscopy and some subsequent bloodwork pointed to Crohn's, but there must have been an infection as well. They suspected C. Difficile but it was never confirmed. I have just finished a 7 week course of Vancomycin and am taking Asacol. Every day since I've been off the Vanco I've felt worse. I know there can't be an infection anymore: I can't imagine anything could have survived such a long course of such powerful antibiotics, but my appetite is terrible, my stomach hurts, and today I had diarrhea again for the first time in weeks. (My stomach rumbles loudly a lot of the time as well, but that started before I even got seriously sick.)

In addition to all this, I am also bipolar and am prone to severe anxiety...not a good mix with Crohn's! I also have suffered from chronic fatigue from the time I was 10 or 11 (incidentally around the same time I began to experience the worst symptoms of my bipolar disorder, which wasn't diagnosed until I was 17).

I have a few questions.

1)How concerned should I be about my symptoms right now? I just saw my doctor Friday but I wasn't feeling quite as bad then as I am now.
2)I have always had a slightly elevated white cell count, for as long as I can remember. I asked my doctors if this could have been related to Crohn's and their answer is always "There's no way to know". But if a lot of people here have had the same experience, then it is at least closer to an answer. So, has anyone here had the same elevated white count even before their diagnosis? (I have instinctively avoided greasy foods and milk for years, but never had a flare-up until this year.)
3)Has anyone else experienced chronic fatigue with their Crohn's? (I'm not just talking about being tired, I mean feeling like your body is made of lead, you can never get enough sleep, you feel like you can barely move, you can't concentrate, your brain feels tired and slowed down, just an intense and often overwhelming fatigue that stays with you constantly.) Again, my doctors always respond with "There's no way to know" when I ask if there's a connection.
4)Do other people suffering from anxiety disorders notice an increase in symptoms during times of stress or increased anxiety? To the point where they might even have diarrhea?

I appreciate any input anyone might have.
 
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Crohns69

Guest
Agb21...

I am also new to the board..and only be diagnosed since Dec07....and I can say I don't have even close the issues you are dealing with....let me just say first...I will say a prayer for you tonight to get better.

I do experience the fatigue and some days I feel exactly how you explained it...but other days...I feel like I was never diagnosed...it's weird.

As far as the diarrhea....it may be the prescriptions you are taking??? I guess it would depend on how severe your crohns is?? Mine is only limited to about 10 inches in my lower colon and I don't have diarrhea unless I eat certain foods....


Hope you get well and take one day at a time..

Brian
 

Kev

Senior Member
Hey AgB621 (N Brian too if I haven't said it before - some of these names pretty hard to remember).. Anyway, sorry to hear of your troubles, welcome to the club. The membership privileges really suck... but our numbers are growing. Anyway, I suffered severe fatigue as well.. literally spent any time not on the john curled up in a ball trying to cope with the pain.. slept when I could, all that fun stuff, right?

Anyway, those were my worst days.. think you'll find that, once you N the drs get you on the right combo of drugs, supplements, diet, rest ,etc.. that this part you're going thru now will pass... least settle down to something you can cope with. Start a diary... record what goes in, how you feel, track your symptoms. It will usually give you a better idea of whether things are going downhill, or on a slow upward crawl... or if there is anything out of the 'typical' that you need to discuss with a doc.. Forgive me for not answering in order.. The WBC will be up, N stay up, as long as your tract is inflammed.. the infection may affect your numbers somewhat... but if your docs cant' pin it down, its a pretty moot point. Let it go for the moment is my advice... concentrate on getting things in some semblance of order.. it's not like they're going to come up with a cure tomorrow. As for stress N this disease.. with or without mood disorders, my personal opinion is that stress does factor in.. maybe not to getting IBD, but in as much as how you cope with it; how easy it triggers, all that sort of stuff. My advice there, for what it's worth... simplify things as much as possible, let go of anything from the past that won't help your current situation.. focus on getting better... (such as better is for us). That may sound trite, easy for me to say... BUT.. after getting this... the reality is everything else HAS to come second. If you look at it the way I look at it, its' the biggest fight.. beat it N everything else is easy. Or, at least it changed my perspective on all my other problems.
 
I believe mental disorders and Crohn's are related to the constant inflammatory process going on. Fatigue is also related as a common symptom

I addressed the inflammation and in the end I went on Low Dose Naltrexone. My on again off again depression went away for the first time since I acquired it in my teens. That does not mean the cause is always inflammation. There may be multiple causes. My personal research into several autoimmune diseases has found that depression and anxiety are very common with all autoimmune diseases.

Bipolar disorders, I am not so sure of. I would not rule it in or out. I just do not have enough information to make a guess.

I have heard that seafood in the diet can help some people with bipolar disorder, but I do not know how well it actually works. You may want to try add some Krill Oil or Fish oil supplements, if you are not allergic to shellfish. The Omega 3 fatty acids can be helpful for inflammation and by association mental function.

Antibiotics will only kill bacteria that is susceptible to the single method of action associated with that antibiotic. It is not unheard of for resistant bacteria to survive even a long assault of use.

Probiotics could help, but it would probably take a long time to significantly change the balance of intestinal flora.

This are just what my current thinking has produced on the subject. Do not take it as the last word.

Dan
 
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AgB621

Guest
In response to Brian, I honestly have no idea how severe my Crohn's is. The doctor said it was pretty mild, but if this is what mild feels like, I don't even want to know what it's like when it's bad. Maybe it just isn't under the right care yet. Being bipolar, I certainly know how tricky it can be to find just the right medication(s).

As far as meds being a cause, it's possible. I take so many medications for the bipolar, anxiety, fatigue, and Crohn's that it can get pretty complicated trying to figure out what causes what. I have a very good psychiatrist though, and I run every new medication by him before I take it. My doctor prescribed Levsin (an anti-spasmodic) and my psychiatrist just gave me the ok, though it's one I'll have to be careful with. The rumbling in my stomach is caused by overactive valves, according to my GI doc. I'm not sure if this could also be causing some of my other symptoms.

Maybe I will just have diarrhea whenever I get severe anxiety these days. I'm not good on planes and back in December, before I even got the sinus infection for which I took the antibiotics which caused the resulting infection, I flew cross-country by myself and had diarrhea several times before I got on the plane and during the flight.

If getting the Crohn's under better control would help the fatigue, that would be the most wonderful thing in the world. I've suffered from severe fatigue for over 10 years and no doctor has been able to tell me why (though we suspect it may be due in part to what is called "neurally mediated hypotension". My blood pressure is very low, and my pulse rises significantly when I go from sitting to standing. My guess is every one of these things is connected in some way.)

As for bipolar being related to Crohn's, I don't believe there is any connection. If depression can result from Crohn's (this is the first I've heard of it but I don't doubt for a minute that it's possible) my guess would be that it has something to do with a lack of absorption of nutrients, causing a deficiency of some sort. Bipolar disorder I believe is a little more brain-based, though changes in absorption (from antibiotics or chronic stomach problems) can certainly affect the meds used to treat it. Again, this is pure speculation on my part, I'm not a doctor and I don't have any training beyond my own experience.

Thank you all for your advice and support, it's nice knowing there are people who understand all of this.
~Alyssa
 
welcome to the forum. I feel so new to be welcoming anybody. But so far this site has been a god send to me and my family. So i'm feeling a sense of beloning. So Welcome.
 
hi Alyssa & welcome to the forum.

regarding your question about the exhaustion - yes, i have had this, and i know just how overwhelming it is - completely different from just feeling tired. i'm sure its a common symptom with Crohns.

it also seems to go hand in hand with the blues, with me. when i am feeling that debilitated, i just want to cry and sleep. the only thing i can suggest is to listen to your body, go to bed when the exhaustion hits.

maybe you need some other medications for the Crohns, in addition to the antispasmodic.

i hope you start to feel better soon, and i'm glad you've joined the forum - people here are really helpful & supportive, and that is so important when our days are hard to get through.
 
Welcome to the forum Alyssa-
I hear you on the fatigue - been recovering from surgery and things are looking up, but pre surgery and in my flare, it was hard to get up at all. My GI said it was Chron's related.
I hope you feel better soon!
 
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