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06-29-2012, 09:23 AM   #1
JDTM
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Difficulty coping.

Strap in.

Sometimes I read this message board, and I think to myself, "Man... all of these people seem like they are far better at coping with their disease."

By nearly all metrics, my disease is about as mild as it gets, from what I understand. Inflammation? Mild, and it apparently hasn't been there all that long. And I've had multiple tests confirming that it's mild; I even had an MRE after the initial diagnosis via colonoscopy. For all I know it could be close to gone by this point, now that I've been on a full dose of Entocort for a month and I'm nearly a month into a taper. Blood levels? Aside from a woefully low Vitamin D level, everything looks pretty OK.

So why am I still sick? Why do my symptoms, which tend to ebb and flow, keep reappearing every few days? And why do I find myself so upset?

I seriously feel like I'm trying to do everything right. I stick to my meds. I research my condition so I can make informed decisions. I supplement with vitamin D to bring those levels up; I take B12 as well, just to err on the side of caution... hell, I even eat sardines a few days a week for the fish oil. I walk or bike to work daily, and I've even been going to the gym with my wife, trying to improve. I've cut out alcohol, coffee, and spicy food -- my diet is bland, and I try to keep it relatively healthy. While I haven't jumped on SCD or Paleo or anything like that, I don't feel like I'm poisoning myself or making myself any worse via food. I even keep a food and symptom diary, but nothing really stands out. I just feel lousy sometimes, and it's tough to pinpoint why.

So here I am, a 32-year-old man, crying at work, getting up every 45 minutes or so to go to the bathroom. I've been trying to get my stress, anxiety, and depression under control, but it doesn't seem to be working. I go to therapy regularly, I started a low dose of antidepressant/anti-anxiety medication... and yet, here I am.

Last night, I finished up my final project for my final course in graduate school. I thought that I'd feel happy, and I'd immediately feel this wave of relief to have the stress off my shoulders... but it hasn't happened yet. I'm starting to wonder if it's going to happen at all.

Anyways, sorry to complain. If you've made it this far, thank you for reading.
__________________
Hi, I'm Jesse!

Current meds:
Lialda (4.8g)
fluoxetine (40mg)
naltrexone (4.5mg)

Previous meds:
Dexilant (too pricey!), Xifaxan (short course), budesonide (tapered off), Pentasa (had to switch in January 2016), omeprazole

Supplements:
multivitamin
2000IU vitamin D-3

Diagnosis:
gastritis & duodenal ulcers, August 2011
Mild Crohn's in terminal ileum, February 2012
5cm of narrowing w/ no signs of active inflammation, May 2014
06-29-2012, 11:36 AM   #2
rinasme
 
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Hi I am now 54, and was diagnosed at age 32. Believe me I was certain I would not make my 40th birthday. You are doing things right. I know for myself getting off all those meds helped. Predniszone worked for short takes. The rest I have never had. After my re-section I did function much better but still had about 4 attacks a year until around age 47 My Gastro told me that he does not have many pateints beyond the late 40s because people seem to grow out of it. I had the odd IBS problem but staying away from Coffee alcohol and sweets seem to help. Things that don t pass like Corn and Nuts are off the list. Chew everything really well. Eat in smaller portions more often. I found eating oatmeal and yogurt work for me. What happened to me 3 years ago was leg and back pain and wierd pains, related to side effects of all the meds I was on.The biggest related pain was B12 deficency, belive me you don t want to experience that either.Now recently it felt like my Crohns is back, but the 3 times it hit me was stress related. When Iwent back for the scope they could not find anything. The Dr is guessing that it is more irritation or adhesion than Chrohns. I have not any meds for Crohns since 1995. You will evetually find out what works and what does not. I still belive that over mdication does not work either because long term use can upset other things.
06-29-2012, 11:39 AM   #3
SarahBear
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I'm sorry I can't say much to help, but I wanted to let you know I read it and I'm sorry to hear you're having a hard time!

You're not the only one having problems coping, I promise! Usually I try to stay positive, so it'll make me feel positive and maybe encourage others (and I think that's what most others are doing, too). But then other times, it just helps to let it out and complain about it. Because honestly... it sucks. It really sucks, and it isn't fair and there's no explanation that makes it harder to deal with.

I'm not sure if that actually turned out very helpful at all.
06-29-2012, 12:36 PM   #4
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Sorry to say I'm in the same camp as "can't say much to help" but I completely identify with you. I, too, have a mild case of Crohn's. And for a few years I was in remission just by keeping a strict SCD diet. But over time I kept letting things in. Felt worse and worse, but so gradually I never thought it was IBD making a come back. Then they found I had a stricture (although I don't feel anything from it). I started with a GI doctor finally, and have had a horrible experience with meds. Now I am awaiting a consult with UCSF. In the meantime, I've tried to go back to the diet (trying Paleo now instead of SCD), still taking B12, D and ginormous Fish Oil pills. And still, I feel like I keep getting the wrong combination on the slot machine. I try to control my stress (without alcohol?!) but Dr appts seem to bring that on big time. And I try to read up everything I can to feel "in control" of the disease, but then I get overwhelmed. At the end of the day the horrible "Why Me's" creep in. And hardly any of my friends can understand (if one more person says "well, I hope you get better" I swear I will punch them).

So I guess all I can say is that it just has to be the stupid disease - mild or otherwise - sucking up all our positive energy and trying to make us crazy. I for one will keep fighting it - I know you can too. You're not alone in the fight.
06-29-2012, 04:44 PM   #5
CrohnsCHES
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JDTM, I'm sorry to hear you are feeling so low. I think that even though most of the people on here talk positive, we also struggle to cope from time to time. I came across this image (I just attached it below - I don't know how to make it appear in the post!) and it kind of reminds me of how we can use Crohn's to make ourselves stronger. We can use it as a test of character and patience and positivity and faith and strength, and although it can suck and be horribly crummy, we can use it as a challenge. Depression may be hard to fight off but I know that with time and patience (and this forum and your therapy!) you can do it!

The way I (try to) see it when times get tough is that this disease isn't going to beat me - I am going to take it as an opportunity to eat well, to count my blessings on my good days, to make it an excuse to stay active when I feel up to it, and to use it to teach me appreciation for the things that matter in life. I know it gets hard but I think once you find something to hold onto, to make you feel like it's worth it to hang in there and fight for the good things in your life, it can be easier to pry off the hold that Crohn's has on your positivity and your hope.

I wish you all the best, and remember - the forum is ALWAYS here when you have trouble coping! Take care of yourself and God bless!
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07-04-2012, 07:24 AM   #6
Justme:)
 
Join Date: May 2012
Location: Ireland
I feel like this quite a lot, especially after coming off prednisolone. My eating hasn't gone back to normal and I can't get it under control and it is giving me heaps of anxiety and depression.

Have you ever thought about looking into whether any of your medication is to blame for the extent of your depression? I was on imuran for 2 weeks once; panic attacks everyday, crying I'd say 3 hours a day, and once I came off it I was completely back to normal!
Good luck with everything and I hope you're able to sort things out because it really sounds like you're going through a rough time. I highly doubt this is being caused by your lack of ability to cope, it is more likely that your symptoms of depression are worse than normal and are making things difficult, I hope this helps and I strongly recommend looking into seeing if medication could be the cause.
07-06-2012, 12:54 PM   #7
Jenamonkey
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HEy JDTM, when you say you are a month into a taper .. do you mean a taper off prednisone?? I just tapered off of pred and after reading your post, I wonder if some of the depression and panic I felt over the past month have to do with the tapering. I have been questioning my ability to deal with things and sort of beating myself up for not handling things better (which I know is counterproductive but impossible not to do sometimes .. especially when you are feeling bad).

Anyway, CONGRATULATIONS ON FINISHING GRAD SCHOOL! That is quite an accomplishment. Especially while dealing with Crohn's.
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Diagnosed September 2010

Mother of One Beautiful Baby Boy 2/27/12!
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Pentasa 2 500mg capsules x 2 times daily
Prenatal vitamins & Saccharomyces boulardii (Florastor)
07-06-2012, 01:08 PM   #8
JDTM
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Thanks Jenn!

I'm tapering off of budesonide -- a corticosteroid like Pred, but with considerably less side-effects. The drug and the tapering might be contributing a little bit... but nothing like Prednisone from everything I've read here.
07-17-2012, 11:08 AM   #9
Jenamonkey
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Hey JDTM, How are you doing? I hope you're feeling better.
07-17-2012, 11:24 AM   #10
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Better for the moment, thanks! It ebbs and flows. Lately, I've been better, even if I'm not quite 100% just yet.
07-17-2012, 12:38 PM   #11
Natalie38
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Hi,

I just read your story.
The way you were feeling is definitely one I can relate to. Health anxiety and low mood. Gets to be unbearable sometimes, especially when you are exhausted from feeling sick and tired.
I find it helpful to remember that these feelings do pass and there are days ahead that will be happy and energetic. Those are the days to look forward too.

Take care
07-17-2012, 12:38 PM   #12
Natalie38
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Hi again,

What type of therapy are you trying?

CBT?
07-17-2012, 02:19 PM   #13
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I am now in my last 2 weeks of tapering off Entocort, same as you I am still having symptoms every few days.
07-17-2012, 03:32 PM   #14
JDTM
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Natalie! I have always had some amount of anxiety throughout my life -- I think that this diagnosis pushed me over the edge, however, and I started getting depressed. I had been genuinely depressed about a decade ago, but I was never on medication for it, and I managed to get better over time (life situations got better, I grew up a bit, etc. etc.). This time around, I started in talk therapy/counseling before my diagnosis, thinking it was IBS and stress/anxiety that was causing my problems. I've since been put on a very low dose of paroxetine (Paxil) by my primary care physician, and I'm actually going in to get a medical evaluation to see if I should get it bumped up a little bit; I was referred to her by my therapist. I'm also going to try hypnotherapy, actually... yeah. I go in for an introductory visit tomorrow, so... more on that as it develops.

(As an aside, hypnotherapy is NOT covered by my health insurance. That'll be paid out of pocket, so I'm hoping it works. If it doesn't, I might try accupuncture at some point.)

Rachel, it might be possible for you to have mild Crohn's and IBS as well, same as me. I wasn't sure about the two of them co-existing either, but I could see how it could be possible. I sincerely hope you start feeling better soon! It's tough to feel better for a couple days, only to feel crummy shortly thereafter, after you allow yourself to think that you might be out of the woods. I know the feeling buddy -- hang in there.
09-13-2012, 03:56 AM   #15
Polar a
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I know how you feel mine is also mild and i spent 10 years over pain before they did tests. I feel some what better now im on the meds but struggling with nasty side effects including massive swollen glands on neck and head but over the years i have kept my head high and battled through and i will always keep fighting, my life from a child has not been easy i have faced alot of lose and alot of pain. All you can do is keep fighting dont let it get to you as you will have days that are worth fighting for
09-13-2012, 10:08 AM   #16
Natalie38
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Hi again,

I truly hope the different treatments you are trying will find you some success with your mood etc...I am a mental health therapist, and work exclusively with anxiety and depression. I work with so many patients that experience low mood and health anxiety due to chronic illness. Being that I can relate to them because of my disease helps me to help them learn to cope and manage the symptoms. I use CBT.

Let us know how the hypnotherapy works, I am very curious.

Take care
09-13-2012, 10:38 AM   #17
JDTM
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Hi all -- first off, thanks for your support! I'm in a better place than I was.

Natalie, thanks for checking in on me. Here's the short version of what's been going on. I've continued traditional talk therapy (I'm going today, actually), and that's been good. I've also had a pretty significant medication change, and I'm now on fluoxetine (generic Prozac), as it's pretty apparent that I have some form of OCD. Obsessive, unwanted thoughts; attempting to combat them with repetitive actions or rituals, etc... I've had this for a while, but it was fairly well-managed up to a point (or so I thought). Add a chronic illness to the mix, though -- watch out!

Anyways, in that respect, I'm doing much better than I was. I start a new job soon, and I've been meaning to look into acupuncture as well (I've just been slacking). I've heard good things. Hypnotherapy was... yeah. Not for me. I was certainly not opposed to it, but I don't know that my mind works quite the way that it should have during the first session, and I also didn't really hit it off with the guy. I don't consider myself very judgmental (I have a great GI and a therapist, and I get along with most people very well), but for some reason his attitude sort of rubbed me the wrong way. The session itself wasn't combative or anything, but he was surprisingly opinionated and aggressive. That said, I'm sure that he's been able to do great things for many other people, but it didn't work for me at the time. I would potentially try it again, but perhaps with a different hypnotherapist.
09-13-2012, 10:50 AM   #18
Natalie38
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Hi,

Thanks for the update! So happy to hear you are in a better place.
To bad about the hypnotherapy..but...regardless of the things we try to feel better..they don't always work. We don't know until we give it a whirl. The important point is that we continue to try.
Sounds like the talk therapy is going well for you. Sometimes when you combine treatments such as talk therapy and meds, it can work very well!
11-04-2012, 05:12 PM   #19
SdN
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Hey JDTM, just read your post and found myself with a lot in common, similar age, similar issues. It sounds like you've got a good head on your shoulders and are doing the best you can. Good luck to you I hope you're able to find some peace and balance.
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Diagnosed with Crohn's September 2009

50mg Imuran - Jun 2010
increased to 150mg Imuran - Jan 2011
5mg/kg Remicade every 8 weeks - Mar 2011
stopped Imuran - Aug 2011
7.5mg/kg Remicade every 8 weeks - Nov 2011
Remicade is still working - Nov 2014
Colonoscopy shows no Crohn's! - Dec 2014

Current meds - 7.5mg/kg Remicade
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