Crohn's Disease Forum » Support Forum » Questions for "mild" Crohn's sufferers -- feeling kinda blue :(


03-11-2012, 05:17 PM   #1
JDTM
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Questions for "mild" Crohn's sufferers -- feeling kinda blue :(

Hi everyone,

I had some questions for all of you mild Crohn's sufferer's out there... because although my diagnosis was "mild," and even though I'm doing comparatively alright compared to many on this forum, my symptoms don't feel all that mild to me, and I've been really sad as of late.

The quick backstory is this: Diagnosed with mild Crohn's and was prescribed Pentasa and budesonide (9mg daily dose). After a week of being hysterical and shaky, I finally stopped taking the budesonide, as it was affecting my mood and I started to feel despondent (although I wasn't sure if that was just the drug side-effects, or just general anxiety/depression resulting from my diagnosis). As it turns out, I felt much better emotionally about 2 days after I stopped the budesonide, but was still occasionally weepy and sad (usually correlating to not feeling so hot -- stomachache, fatigue, cramps, whatever).

After following-up with my doctor, she told me to try going back on budesonide at a much lower dose (3mg) for two weeks if I could handle it, then taper down to every other day for two weeks. When I started the first three days were just fine -- no mood swings, and generally felt OK -- but the rest of this week has been much more iffy in all respects (mentally and Crohn's symptom-wise, and I'm pretty sure they're probably related).

I think this is especially tough because I had a few days where things were going alright, only to revert back to the usual low-level sickness. I'm on the third week of Pentasa (21 days and counting), and I've heard that maybe it should have started to do it's thing by now, but I'm not sure...

Anyways, this backstory sort of encapsulates my questions:

If you've taken Pentasa, do you remember how long it took to work?
While working towards feeling better, did you ever have a few good days in a row, only to revert back to feeling lousy, seemingly apropos of nothing?
If you have achieved remission, how did you know you got there? (Starting to wonder after a few days of feeling good...)

So yeah, if anyone wants to respond that would be pretty awesome. I'm just feeling kind of down and it would help to hear from people who have been there as well.
03-11-2012, 07:20 PM   #2
Momof2EW
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Although, I have not many answers at all... I just wanted to reply and say, I hope you get to feeling better. I had days where I felt depressed and just plain out horrible when I was taking different anxiety meds. I am no help, but I know how it feels to wonder something and just have no answers.

My GI did tell me last visit about 5 months ago that he thinks I am reaching remission with my CD. Which is good....until the past week I am having signs of a flare up...and that is no fun. Anyways, I'm rambling on. I hope you get the answers you need and start to have everyday feeling great!
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Elise
Getting through this, one day at a time!
Diagnosed With Crohn's in September 2010
Medications:
Remicade
Lexapro 30mg daily
Klonopin 1mg 2xday
Trazodone 150mg nightly
Lomotil(only as needed)

Tried & Retired:
Humira,Buspar,Effexor XR,Ambien,Prednisone(devil)

"Sometimes I think my life would make a great TV movie. It even has the part where they say,
"Stand by. We are experiencing temporary difficulties."
03-11-2012, 09:21 PM   #3
tots
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I am on Welbutrin and I think that helps fight the side affects of Entocourt. But really by the time you are sick enough to go on the medication you would feel anxiety and depression. I have heard it explained that you rate your Crohns in two ways- how diseased your colon is rate 1-10. then rate your symptoms 1-10. So your disease can be mild while the symptoms are higher on the scale and turn that around your process and be bad with lower symptoms which I think is bad as it can go down hill fast. After all- the only thing you can do is listen to what your body is telling you ! Maybe your feeling down due to fatigue? Or maybe you are plain old tired of feeling crummy?

Take care of yourself and get alot of rest!
03-11-2012, 09:35 PM   #4
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tots, were you on Wellbutrin before you were diagnosed and/or before you were prescribed Entocort? Let me know! (I was sort of wondering about whether or not I should inquire about an antidepressant if it could counteract the side effects of the budesonide... but then again, I'm taking such a low dose and I hopefully won't be taking it for very long. I suppose I'll cross that bridge when I get to it.)
03-11-2012, 09:42 PM   #5
tots
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I statred the Welbutrin 3 years ago ( its been a rough couple of years!) so it really helped. So after first diagnosis and before Entocort. I believe it has helped me fight off alot of the blues you can get with a chronic disease and all the meds we can take. I say talk to your Dr. I like this one as it was not associated with weight gain- 2 1/2 years of prednisone took care of that.

Has your Dr told you a game plan for after your Entocort? Mine hasnt yet. At first he said Remicade- then a few weeks later said no- he only uses that foe patients with fistulas. I tell you I feel like I am in the twilight zone!
03-11-2012, 09:50 PM   #6
wolfem
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I can really only respond to the first question. Pentasa took about a month to work for me. I think it might have calmed things down for a short while. I was on it for about 7 months and it worked a little (some of the time). Then it stopped working even after going up on the dose. I was having difficulty balancing nutrition and keeping flares at bay but everything eventually subsided.

Hope you feel better soon.
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DX: 2010 Crohns (in remission), gastritis/acid reflux, TMJ and goiter
SX: Terminal ilieum resection
Past meds: Prednisone (short term), Pentasa
Current meds: Sertraline, Seroquel, Lorazepam (as needed)

Supplements: Trace min EOD, Fish oil, calcium+D, B12 sublingual + B complex, goat yogurt



03-11-2012, 10:56 PM   #7
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tots: No major plan that I know of, as of yet... if all goes well and the budesonide/Pentasa combo manages to calm things a bit, then the plan is to just stay on Pentasa in order to maintain. Beyond that, I'm not sure. I'm just waiting for stuff to kick in. I have a follow-up scheduled with the GI in a little over two weeks, so once I'm at that point we'll take it from there. My regular GI doc is going to be on maternity leave for a bit (I was one of her last patients before she went in to give birth!), which is a bit of a drag because I really like her, but she assured me that I was covered by other gastroenterologists and I'd be in good hands. Which is nice to hear.
03-11-2012, 10:57 PM   #8
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Elise and wolfem, thank you for your responses as well! :)
03-11-2012, 11:24 PM   #9
tots
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I am not on anything other than Entocort. I wonder if that is
standard?? My doc makes me nervous.
03-12-2012, 02:11 AM   #10
Rebecca85
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When I started taking Pentasa, I was already on pred, so I didn't have a period of waiting for it to kick in. It just stopped me getting worse as I tapered.

As for days of feeling good and days of feeling not so good- absolutely! It might be worth keeping a food and symptom diary to see if you can spot any triggers. For me, stress was a big one, and some hard to digest foods like red meat, crunchy veg.

As for remission, it crept up on me pretty slowly. Suddenly I realised that I hadn't needed to take my 'as needed' painkillers for ages. And I was eating foods that had caused me trouble before (there are still a few foods like sweetcorn I won't touch, but for the most part I eat a normal and varied diet). My stools settled back into the same rhythm as they were pre-Crohn's (but I am lucky with this one, as diarrhoea was never really a big symptom). The only symptom I have left is the awful fatigue- but there may be other medical reasons for that, it may not be part of Crohn's.
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03-12-2012, 08:40 AM   #11
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Rebecca, glad to hear that! Side effects aside, the general consensus is that Prednisone works for many people very quickly, but because I wasn't put on it in the first place (and because I had such a lousy first go with budesonide and stopped), I wasn't quite sure if I should be seeing such immediate results. Have you maintained remission for a long time?
03-12-2012, 09:15 AM   #12
CLynn
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I could never tolerate Pentasa or Azacol, they made caused me the same symptoms as my Crohn's does, so just don't work for me. Prednisone just sneaks up on you with the getting better, but I noticed Imuran worked faster and held my remission longer, at least 15 years ago it did, we'll see about this time. Stress and worry will make the symptoms worse too, so try and relax as much as you can about it all, tell yourself that "this too, shall pass"....promise. Glad we all have each other to vent too!
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Diagnosed:1988
Previous meds: Sulfadiazine, Flagyl, Prednisone, Imuran, Pentasa, Asacol
Surgeries: re-section 2004
Currently taking: B-12 injections every 2 weeks, multi vitamin/mineral, fish oil (1000 mg), D3 (5000 mg)

Also lucky enough to have psoriasis as well.
03-12-2012, 09:46 AM   #13
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Thanks Cheryl. Stress and worry are definitely getting to me... I just started crying in front of my wife. I just want to feel better.

Gonna head out on a short bike ride with her and hopefully it takes my mind off things.
03-12-2012, 10:30 AM   #14
CLynn
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I know, JD, I know exactly what you mean. Am feeling so tired this go round, don't remember feeling so tired before, but have had 7-8 years with no flares, so maybe I just forget how tired I feel. Or possibly it's just being older on top of it, lol! I am sure your wife doesn't mind your tears. One of the things I loved most about my dad was the fact that he wasn't afraid to show his tears and emotions, and I love that in my husband as well. Gotta let those feelings out when they are there, and then they can pass for awhile. Hugs!!!
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