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06-04-2013, 12:04 AM   #91
JD112233
 
Join Date: Jun 2013
Location: West Palm Beach, Florida
Thank you for the response. I am taking Humira and I am taking it once every 2 weeks. I do not see much of a difference. It has been about 5 months now. I need to do something. With all the discomfort and fatigue, I experience, I applaud you for your outlets. Is that something you do instead of medication? Or just an outlet to get away from the Crohn's for a while? Or both? Thanks for the response. I would love to do other things besides work but I am just so fatigued
06-04-2013, 01:03 AM   #92
colphin
 
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Join Date: Jul 2010
Location: Brisbane, Queensland, Australia
Hi there, I do them to avoid medication. I have had severe Crohns for 30 years and far too many operations. Zen meditation helps me a lot. I dont suggest replacing prescribed medication at all but at least the Zen is my own activity to help manage it! It only takes about 15-20 minutes a day before work. I go to a class once a week which takes about 2 hours so that isnt a big committment. I excercise daily, again before work, and that is also a great help. The fatigue levels have dropped and the Crohns is more manageable. The rest i just tend to do for fun. I was a workaholic but made the decision to cut my hours back just a tiny little bit to make sure that Crohns didnt conspire with over work to make my life a misery. It has worked
10-21-2013, 01:13 AM   #93
Kellymowalker
 
Join Date: Aug 2013
Location: Bonney lake, Washington
I have always been a worrier, however never experienced anxiety before until now. I left my job, am having trouble finding one, have insomnia from the anxiety.

I have used Immovane to help me sleep, but even that is now not working. I used Gravol, but it upsets my stomach.

I just want something to turn off my brain until I get a job and can move into a new apartment (neighbours are up until 1am walking on their heels and I hear everything).

What would be your recommendation? What you have taken? I have to function daily and go to interviews and study for second language tests. I need something for the night time only, so that I can relax and sleep. During the day, my anxiety is fine. I will start to learn other techniques, but at this point they do not work due to my situation.

I am seeing a psychologist, but I want to be ready to suggest something. She is trying not to medicate me as I don't wish to be either; but it has been more than a week of not sleeping or sleeping for a bit with Gravol and then feeling horrible all day.

Thanks all.
Talk to your dr about trazadone. I take it at night when I jump into bed. Turns my brain off so I am able to fall asleep. In the last four years I have slowly retrained myself & barely need it any more. Sleep is what keeps me healthier. 10 hrs a night on average is what I like. Trazadone is not addicting like other sleep aids. Hang in there.
10-22-2013, 02:09 AM   #94
colphin
 
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Join Date: Jul 2010
Location: Brisbane, Queensland, Australia
hi there. I have studied Zen Meditation for the last 8 years and that works wonders for me. Current Doctors call it Mindfullness or Cognitive Therapy but its Zen for the most part. 20 minutes a day can make a HUGE DIFFERENCE for us all. It helps me manage my Crohns even at the worst of times
10-24-2013, 11:44 AM   #95
Spooky1
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hi, i'm trying to get back into meditations. I like the idea of Zen Buddhism. have you seen any of Eckhart Tolle on youtube? he's quite good for us with anxiety. I think the
D3 and string B vits along with Magnesium has helped me somewhat.
10-24-2013, 07:40 PM   #96
colphin
 
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Location: Brisbane, Queensland, Australia
Vitamins are a real help although for many of us fortunate folks with Crohns we cant absorb them too well. I agree, there are some great meditation guides on You Tube. For me I find going to my Zen class once a week and meditating 2 times a day for short periods is better than any medication i have ever been given. It helps put the anxieties, stresses, etc into the right perspective, calms the mind and thus the body, which in turn makes managing the Crohns a LOT easier. The best and easiest starting point is to simply sit down for 10 minutes, hands folded in the lap, eyes closed or nearly closed and count to 10. 1 Breath in and then out is 1 and so on. You cant ever get rid of thoughts, we are human. But when they come into your mind just observe them like a floeating leaf etc " Oh, there is a thought" and go back to 1. Its simple , its easy, you dont need any equipment, and it works. You will find when you observe the thought, you will also observe your reaction to it. So it then becomes "Oh there is that thought and that queezy feeling that goes with it! " Soon you will see that the minute you do this they drift off. Same applies to pain to an extent. The joy of Zen is that it isnt religuous, it is simple and easy and works. The head of my Zen Comunity is an Anglican Priest! The key thing is that you are taking control !! So much of what we go through with IBS and Crohns is about losing control, with meditation your the boss!
Good luck, happy sitting - I KNOW it will make a huge difference for you.
10-24-2013, 07:57 PM   #97
peterdoats
 
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I have always been a worrier, however never experienced anxiety before until now. I left my job, am having trouble finding one, have insomnia from the anxiety.

I have used Immovane to help me sleep, but even that is now not working. I used Gravol, but it upsets my stomach.

I just want something to turn off my brain until I get a job and can move into a new apartment (neighbours are up until 1am walking on their heels and I hear everything).

What would be your recommendation? What you have taken? I have to function daily and go to interviews and study for second language tests. I need something for the night time only, so that I can relax and sleep. During the day, my anxiety is fine. I will start to learn other techniques, but at this point they do not work due to my situation.

I am seeing a psychologist, but I want to be ready to suggest something. She is trying not to medicate me as I don't wish to be either; but it has been more than a week of not sleeping or sleeping for a bit with Gravol and then feeling horrible all day.

Thanks all.
i have found zoloft and kalonapin at night helps all night for sleep and most the day with stress hope it helps if you doctor gives it a try
10-24-2013, 08:23 PM   #98
colphin
 
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Join Date: Jul 2010
Location: Brisbane, Queensland, Australia
Hey there
Like you i quit my job. For me i was working enormous hours and travelling the world with new technologies we had developed and it was giving the Crohn's an excuse to beat me up! THat said, I have had it for the last 35 years, had a lot of surgery and had a few really close calls. I have worked all around the world during that time but the Crohns has always made that a challenge. Despite all of that i am now healthier than most of my friends at my age and take no medication. That route isnt for everyone i hasten to add, medication is really important. Your spot on ..........I have outlets that reduce that requirement in my case and have taken the problem of anxiety, exhaustion and insomnia and turned them down to an annoying background noise! Doesnt mean i dont get a good kick from Uncle Crohn's from time to time ........I can just manage it better these days! So what do I do? Most importantly I meditate twice a day, I surf, I sculpt, I garden, I ride motorbikes , I travel etc! I rest when i need to and am no longer trying to prove to the world that i can work 900 hours a week despite the Crohn's. I have my consultancy business and I am about to start a PhD ( when i get around to it!)

Sounds impossible for you at the moment? I thought it was for me a few years ago...........its not. You can and will do it, you will be in charge and taking positive steps to a really happy life. Crohns or not!

Go get em!
10-24-2013, 08:53 PM   #99
Amy2
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Location: Lafayette, Colorado

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Son had a good week, then today he got somewhat stressed out and his stomach fell apart for a couple of hours.

We learned that he's still in remission just today.
__________________
Three passions, simple but overwhelmingly strong, have governed my life: the longing for love, the search for knowledge, and unbearable pity for the suffering of mankind. Bertrand Russell
10-27-2013, 07:00 AM   #100
Grugsley
 
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Hey guys,

I've just started CBT as well, or cognitive behavioral therapy! I've only done one session so far... it's for generalized anxiety, which peaked last year when my doctor told me I had to have a bowel resection, I was only 21 at the time and an absolute wreck. I've always been a worrier but I'm very down to earth so I knew the anxiety wasn't normal.
Pretty much since then I've suffered from pretty bad anxiety, but particularly in public situations, if I don't know where the bathroom is, not feeling well that day, my tummy makes loud noises and everyone stares at me at uni haha (I'm doing my Masters at the moment). To make matter worse I had a really bad flare up three weeks ago, and now on top of imuran, pentasa and pariet am on prednisilone. I find I also stress about being on so many meds at 23 and wondering what the long term effects will be!
10-27-2013, 07:35 PM   #101
colphin
 
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Join Date: Jul 2010
Location: Brisbane, Queensland, Australia
I know how it feels. I had a full colectomy and illesotomy in my late 20's. I was never sure if the Crohns made the anxiety worse or vice versa. I think one of the joys of getting a bit older now is that i realise that the VAST majority of things that i have become anxious about simply never happen! In Zen they call them delusions. We take an initial fact and add to it with supposition and guesswork and steadily get more and more wound up. Most of us even imagine how the conversation will go with ABC when XYZ happens. Getting training in recognising that these thoughts ARE delusions AND that we all have them is a fantastic first step in beating anxiety or at least knowing how to put it back in its pen! Whether that is through Zen, CBT etc doenst really matter although to me I think both is the best answer. The other really vital point is to know that just because you have had anxiety and its been tough so far, that doesnt mean for a moment that you cant beat it! I have known 80 year olds who have been able to get the wild horses of anxiety back under control with just a little training. All i know for sure is that teh Crohn's is much better behaved when i have anxiety and stress under control. Doesnt mean dropping out of life at all! Quite teh opposite.........it means you get to be in charge for a change!
Colphin
12-12-2013, 05:43 AM   #102
Emmy
 
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Location: Birmingham, United Kingdom

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I like to think I was a very carefree person. Before Crohn's anyway. Even after being diagnosed, I didn't think it was that big a deal, my mum was more worried than me. But after landing in hospital after a bit of a stressful time at uni, and then after coming back to England for more stress after being stress free in China for over a year, and fine, I've come to realise stress and emotional stuff probably is causing some of the Crohn's problems. And thinking about it more makes it worse I think. I want distractions. I want to not think or worry about it again, but I have to worry about what I eat, and reading about Crohn's and being in hospital again really didn't help. Just made it more scary. I just feel like I could cry at any given moment over any little thing... I used to cry to get what I wanted or if I didn't get what I wanted when I was younger... but this is different...
08-01-2014, 06:21 PM   #103
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
Hello fellow members. I need help to understand this. I am new to this forum and looking for someone to relate with my issue.

I want to share my story and experience with this diagnoses of mild Crohn's.
It all started around May 2014 and I have been battling this since then. It started out with a family trip to the mall with my wife and kids. I noticed that my abdominal area was in pain and I was experiencing Nassau and a little dizzy. When we got to the mall I started to feel it even more and it made me really sick. I started with fast palpitations, sweating, numbness on my arms and felling immediate dom. I thought I was going to die. Luckily I was near a hospital and we rushed over to it. I was seen and after the check my ct scans of brain and EKG they said it was not a stroke or a heart attack. They checked to see if it was an aneurysm and the ruled that out as well any blood clots in my lungs. The ER dr did not do a ct scan of my abdomen and ruled it as a exits and panic attacks. I know myself and told that I have never suffered from that and that I disagreed with him. I was kept over night to be only screened a little more and then the a dr came in a cardiologist and said it was vasovagal syncope.
I went to my cardiologist and he said that he did not agree with that and that there was something else with me. He cleared me of having any heart conditions and told me to go to a gastroenterologist and a neurologist. I went to a gi and he said it could be ibs and he treated me with welcol. That did not seem to help me at all and I was still having the same symptoms as before. My neurologist and cardiologist said it is my intestines or stomache and that we needed to get to the bottom of the matter. My cardiologist ordered a ct scan of my abdominal area and it came back clear. However, the same symptoms are still there. They both refered me back to my gi.
I went ahead and did a endoscope and colonoscopy and the results came back as mild Crohn's. The gi dr started me with pentesa 500mg 6 pills a day and after almost two days I started to get severe headaches. So they canceled the drug and gave me bebudesomide ex 3mg 3 times a day. I have been tAken it for 2 days but I still have the headaches, dizziness a, faint and nausea.
I feel that my abdominal area is still weak and not sure if the medicine is working.
I just want to see if anyone out there has experienced what I have.

1.naseau
2.dizzy
3.faint or fainting
4. Tingling and numbness on arms and legs as well as your face
5.fatigue
6.frequent thirst
7.dry mouth
8.hungry but hurts to eat
9. Anxiety or panic
10.fast palpitations

Mainly those are the symptoms. Please anyone help me I am tired and exhausted from dealing with this since may. It's been around 3 months and nothing has given.
08-01-2014, 06:22 PM   #104
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
Hello fellow members. I need help to understand this. I am new to this forum and looking for someone to relate with my issue.

I want to share my story and experience with this diagnoses of mild Crohn's.
It all started around May 2014 and I have been battling this since then. It started out with a family trip to the mall with my wife and kids. I noticed that my abdominal area was in pain and I was experiencing Nassau and a little dizzy. When we got to the mall I started to feel it even more and it made me really sick. I started with fast palpitations, sweating, numbness on my arms and felling immediate dom. I thought I was going to die. Luckily I was near a hospital and we rushed over to it. I was seen and after the check my ct scans of brain and EKG they said it was not a stroke or a heart attack. They checked to see if it was an aneurysm and the ruled that out as well any blood clots in my lungs. The ER dr did not do a ct scan of my abdomen and ruled it as a exits and panic attacks. I know myself and told that I have never suffered from that and that I disagreed with him. I was kept over night to be only screened a little more and then the a dr came in a cardiologist and said it was vasovagal syncope.
I went to my cardiologist and he said that he did not agree with that and that there was something else with me. He cleared me of having any heart conditions and told me to go to a gastroenterologist and a neurologist. I went to a gi and he said it could be ibs and he treated me with welcol. That did not seem to help me at all and I was still having the same symptoms as before. My neurologist and cardiologist said it is my intestines or stomache and that we needed to get to the bottom of the matter. My cardiologist ordered a ct scan of my abdominal area and it came back clear. However, the same symptoms are still there. They both refered me back to my gi.
I went ahead and did a endoscope and colonoscopy and the results came back as mild Crohn's. The gi dr started me with pentesa 500mg 6 pills a day and after almost two days I started to get severe headaches. So they canceled the drug and gave me bebudesomide ex 3mg 3 times a day. I have been tAken it for 2 days but I still have the headaches, dizziness a, faint and nausea.
I feel that my abdominal area is still weak and not sure if the medicine is working.
I just want to see if anyone out there has experienced what I have.

1.naseau
2.dizzy
3.faint or fainting
4. Tingling and numbness on arms and legs as well as your face
5.fatigue
6.frequent thirst
7.dry mouth
8.hungry but hurts to eat
9. Anxiety or panic
10.fast palpitations

Mainly those are the symptoms. Please anyone help me I am tired and exhausted from dealing with this since may. It's been around 3 months and nothing has given.
08-02-2014, 03:49 AM   #105
UnXmas
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juangrov: the symptoms you describe are not specific to Crohn's, though nausea and pain on eating are certainly often Crohn's symptoms, others may experience a lack of appetite rather than still feeling hungry. But all the symptoms you describe can come from many different illnesses, Crohn's included.

The anxiety and panic you describe feeling are likely the natural reaction to having something scary and unpleasant happening to your physical body. You say you never had panic attacks before, and although many doctors may like to say that your physical symptoms result from the anxiety, from what you've written it sounds like it's the other way round - you get physical symptoms, which understandably make you anxious.

It's possible that as you grow used to having Crohn's and, hopefully, are able to find treatments to get your physical symptoms under control (the right medications and/or learning how to manage your life around your illness), the anxiety will lessen. 3 months is not so long a time - getting used to having a chronic illness can take a while.

Find a doctor who listens, and keep trying different medications. And try not to focus too much on your illness - keep doing the normal things you did before you became ill as much as possible.
08-02-2014, 07:32 AM   #106
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
Unxmas...thank you for responding to me. I understand a little better now. My neurologist said the same thing. He mentioned physical triggers and he said until I get Crohn's under control then I will keep getting the other symptoms. It's frustrating feeling bad and not leaving a normal life. And when ur gi tells u that it has no connection but the other dr says that there is. Do you think I need to take the clonazapan regularly until I am able to get the Crohn's under control? And right now I am taken Budesomide ex 3mg 3 times a day. How can I tell if it is working or not?

Last edited by juangrov; 08-02-2014 at 07:39 AM. Reason: Text on phone did not complete message
08-02-2014, 07:55 AM   #107
UnXmas
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Unxmas...thank you for responding to me. I understand a little better now. My neurologist said the same thing. He mentioned physical triggers and he said until I get Crohn's under control then I will keep getting the other symptoms. It's frustrating feeling bad and not leaving a normal life. And when ur gi tells u that it has no connection but the other dr says that there is. Do you think I need to take the clonazapan regularly until I am able to get the Crohn's under control? And right now I am taken Budesomide ex 3mg 3 times a day. How can I tell if it is working or not?
Doctors often contradict each other - mine are doing that at the moment too. It makes it very difficult for us patients. If something one doctor is saying doesn't feel right to you, don't be afraid to question them or go with the contradictory opinion of another doctor.

The clonazapan - I'd be wary of taking this long term, as it can be addictive. I take an anti-depressant which helps me enormously, even though my "depression" arises from bad circumstances existing in my life, rather than from some fault in my brain chemistry. So even though you have good reasons to be anxious (feeling physically ill), it does't mean that taking a medication to deal with the anxiety won't help you. I think it could well be a good idea to take something to help with the anxiety - I'd just be cautious about taking something that's addictive. Addictive anti-anxiety meds are probably best to use only if you experience anxiety occasionally, or for a very short period. If it seems like your anxiety may go on a while, or that you feel the need for something every day, it is probably better to ask your doctor for something non-addictive.

I'm not sure about the Budesonide - but if you start a thread in the treatment forum here: http://www.crohnsforum.com/forumdisplay.php?f=16 someone may be able to help you and give you an idea of when you should start feeling the improvements.
08-02-2014, 08:15 AM   #108
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
Again thank you so much. You have been of great help. I sent you a contact/friend request if that is ok with you. In case I have any other questions is it ok to ask you?
08-02-2014, 09:20 AM   #109
UnXmas
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I'm no expert, but I'll answer if I can. Starting your own thread with a title specific to your questions may bring you more help from others too.

Edit: I see you already started your own thread. I hope the advice you've been given their is useful too.
08-02-2014, 12:55 PM   #110
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
Thank you so much. You have been a great help.
08-10-2014, 04:01 PM   #111
IofNewt
 
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For me, I was prone to panic attacks before I was diagnosed. They became worse after I'd had 2 fires in 2 separate apartment buildings within 18 months. That lasted for almost 2 years, even today I feel insane when I hear/see fire trucks.

The stress of the symptoms, multiple hospital visits, missing work, missing salary sometimes, many tests none of which were comfortable, being a bit of a burden to family, frustrations after my resection due to not being able to do much of anything for the first few weeks and the fear of the surgery itself beforehand... also finding out a few weeks ago that just a year after my resection, crohn's has started up again.... all that is ridiculously depressing.

I've been prescribed anti-depressants before, but I refuse to take them.
__________________
~~
Diagnosed with Crohn's in the 1990's
Treated with Flagyl in the past, but now taking Purenitol.
Started with Remicade Aug 6, 2014. Also using Imodium
Had resection in June 2013, but have a recurrence
already.
08-10-2014, 04:50 PM   #112
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
I am sorry about your situation. That is a lot of stress an anxiety all at one time. The problem with me is that ever since I was young I always had to go to the restroom and I thought loose stools where normal. So I really never gave it any attention. Every dr would tell me it was ibs. So I ran with that and they told me that there is not much you can do about it. So I went on with my life until now. I never really had serious anxiety and do not know what it is. And now I am coming into this issue and I am not sure what to expect from the medication. And I am not sure how long it takes for Crohn's to go into remmision. So I am lost and at the same time overwhelmed. Last week they just told me that me liver enzymes are elevated. Since may they have gone up and down 4 times and they are not sure why. So the think it may be my medications that are altering them. So they want to check for hepatitis. In the mean time I am still feeling terrible and I do not know why. I still have the headache even after my dr suspended most of my medications. They thought that would be the cause for these feelings. However, I still feel dizzy, naseaus, fatigued, palpitations and syncope(fainting spells). I just had an episode at the Home Depot and I thought I was not going to get through it however what ever it was I was able to manage to get out of thd. And I was able to come home. I started to notice my throat was closing and I figured it maybe a anxiety attack. I got home and started to do some thing to take my mind off of it. I am still now and I still feel tired and drained. I just want to get better!
08-21-2014, 06:24 PM   #113
IofNewt
 
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Sounds like a panic attack. Hate those!

Since I refuse to take anti-depressants, I try to do what others have said... occupy myself with hobbies, walking (since it's free and easiest for me), yoga which actually does relax me about 60% of the time and looking stuff up.

It's a weird hobby, maybe, but I will read the dictionary if I have to in order to distract myself from worrying about my stomach. I will spend hours looking up and then reading up on any whacky topic that I have ever thought of or imagined in my entire life JUST to keep me from focusing on how crappy I feel.
08-21-2014, 09:36 PM   #114
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
Thanks lofnewt I believe I just had a bad one today at work. I felt that I could not breath my chest hurt and I started to feel a really bad headache. I ended up at the ER an they said it was nothing. So they sent me home with a new pill. A anti acid pill. Glad they finally solved my issue, yea right. I still have the headache my chest feels sore and the only reason I went bc my cardio. Told me to. I have yet to be diagnosed with anxiety and panic but if this is it it really sucks. It comes out of no where and it is frustrating especially when it's at work.
08-22-2014, 07:02 AM   #115
Spooky1
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Hahaha, I'm guilty of reading the dictionary too. One of the best books in the world, lol.

get a tad of warm water, add magnesium flakes and put it on your body. If it stings to start then dilute it a little more. Look up benefits of magnesium on you tube. it's great for anxiety. I'm not suffering anywhere near as badly as I was last year. I swear its the magnesium. Could be the b12 injections, but look up both on you tube.
Good luck sufferers.
08-22-2014, 05:19 PM   #116
juangrov
 
Join Date: Aug 2014
Location: houston, Texas
Thanks spooky I am going to try victim an b12, d2 and magnesium. See if this help. By the way I had a work up today. Did the tilt table test and almost completed it the last 5 minutes I started to feel like I was going to pass out. The conclusion is I also have casi Chagall syncope.
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