Anxiety - need to vent

Hoping,

I sent you a PM message.

C-jay

Hoping,
It sounds like PTSD which is very common with us and a lot of people who have been through the mill and then come out the other side only to have sudden physical symptoms.
You may be suffering from a simple flu but your brain has gone into overdrive and is in a panic...it is understandable. You may need some talk therapy (or just a lot of time with good friends who have large shoulders and kind ears) or some chemical help from something that can take the edge off.
A lot of us go through this stuff. Flashbacks, nightmares, claustrophobia, over or under-eating, sleeplessness, exhaustion, panic, shakes, sudden crying (at bad movies)...goodness, the list is long but it all amounts to the same thing. We went through hell. Now we are mostly better but our brains have jet-lag. Any upset can set us off and there is no hard fast rule as to when or how long it will last.
We are all here for you
Sharon

Sharon, well said. Hoping, I hope ( ) that you see that PTSD is a very real thing, that we pouchers ALL go through it and that what you're experiencing has a name. Sharon mentioned "a simple thing" can set us off. Mine included the smell of the soap in my surgeon's office and a chest cold this summer. The first one made me break out in a cold sweat and the second made me become someone I didn't like. Your anxiety is a reaction to all of these difficult things you've had to deal with. Each one alone is hard but each successive one makes it 100 times harder and the body and mind react by going to that "worst case scenario" place. A therapist can help you stay in the moment when these things happen rather than emotionally going to the extreme. So can we

Thank you both so much. Knowing that there is a real cause for these feelings is very helpful. It is so true that anything can set me off. I had a good night last night and immediately woke up in full panic mode this morning. The shakes, the crying and worrying about the unknown, worrying about work, personal relationships and still trying to act like all is well is horrible. I started an anxiety med last night so maybe that will be a start. Of course I worry about becoming addicted!!

sounds like you need therapy by psychiatrist who can administer drugs if necessary..no need to question why its happening because many of us who live with not knowing hen the shoe will drop have experienced it..by any name it is anxiety caused by the ups and downs you have and continue to experience..this is not something to wait out in my opinion i think the proper dr for it is necessary for sdealing with your ongoing issues which are all real!!!

i have been on prozac and welbutrin for years its got me through this past 10 years..complete meltdowns are not the norm for me i believe because of the drugs and oping methods i employ

anxiety at your level described is awful and its real so please address it asap..

Thank you Rebecca. I have been researching doctors today and will hopefully get in soon. As all of you know, this is tough.

Very glad to hear, Hoping. This is a very positive move on your part. As Rebecca said, don't wait and suffer. And when you get through to someone, be very clear about what you're going through and why and that it needs attention now. I used to be meek with doctors but this journey has made me much more of an advocate for myself and others. One good thing to come out of it!

Hoping,

I think it's safe to say these bowel issues just naturally give way to anxiety. I was diagnosed with PTSD a month before my latest surgery because I just couldn't hold it together. Meds from a Psychiatrist have helped tremendously while I've been going through this. It's worth looking into, even if going to the doctor one more time is the last thing any of us want to do.

I'm so sorry to hear about your difficulties. Good luck and know we are all here for you!

Thank you all. It is so good to be able to talk to others that understand. I thought I was losing my mind.

I just read a recent medical article about PTSD and the video game Tetris.
Apparently, tetris has a calming effect on PTSD! They say that playing it just after a trauma helps the brain process the trauma and prevents the post traumatic stress. They are testing post trauma with great results too.
So, you may wish to try it out...I have never played it but am considering it.
What could it hurt?
Sharon
ps. I get great results with Mahjong Alchemie too.

Really! That is funny because my husband and I both have Tetris on our phones. He plays every night. Maybe I should play
more!

This past year I received counseling from a counselor who specializes in working with people with chronic pain and illnesses. It was GREAT as I didn't have to explain everything ad nauseum! Maybe see if there is a therapist in your area with such a background?

Gin

Hoping,

So sorry to hear this. I too struggled with anxiety on and off after my surgery. I had emergency surgery and was hospitalized for 5 weeks. I came within hours of dying. Please understand that what you are feeling is not uncommon under the circumstances. I do believe that some of us can and do go on to develop a form of PTSD. Like you, I was fine for a while, but then a few years ago, I had some complications which terrified me, and I felt as if I was always waiting for the other shoe to drop. I have had therapy in the past (with mixed results, I must be honest. The first therapist I saw completely brushed over my medical history and looked for "other sources" for my anxiety. She did not seem to appreciate the severity of my illness and its impact on my life. I became frustrated with the process as it was not at all helpful to me. I stopped attending. I was later referred to a therapist who specialized in treating individuals struggling with/recovering from serious medical problems and chronic illness and she was quite helpful and did enable me to put many things in perspective.).

I would strongly urge you to discuss your anxiety with your doctor. There are treatments for anxiety. However, I would also caution that finding a good therapist is a must--ideally one who specializes in treating individuals with medical problems/chronic illness that may be contributing to anxiety/depression.

I know it can be difficult, but getting out and being active is also important for your mental wellbeing.

I am much better these days, pretty much living my life and feeling more or less "normal." There is hope. It can take time and patience to work through everything, but you can do it. Please don't be afraid to ask for assistance. You don't have to feel this way.

I had my first session with a therapist last night. She was very understanding about my medical situation and said she can certainly understand why I am this way after all I have been through. I still feel guilty because I know so many others of you have been through worse. I also started back on Lorazepam my GI gave me right after surgery. Will see him next week. I just hope I can get back on track before I stress out the j pouch too much. Again, it so great to be able to talk about this.

Hoping,
I can certainly "feel your pain". I had my colon out due to UC in 1997. About 3 years ago I started having terrible issues with dehydration. Nothing appeared to change, except I was getting older, but I would get hospitalized every 3 months or so for 3-4 days at a time. And it wouldn't be just the dehydration, potassium, sodium and other things would be critically low. Once a week hydration sessions have helped, but this year I've been in the hospital 4 times.
I've missed so much work, I am out of leave. My last two checks had unpaid time on them for being out sick. So, much like you, stress is coming from all directions. I'm so busy at work right now I no energy to do anything when I get home. You name it is sitting in piles waiting for me. My Dr put me on an anti anxiety pill which has helped a LOT. It has been suggested I see a therapist as well but I literally cannot take the time off to do so right now.
I am going to the Mayo Clinic next month to see if they have any answers as to why I can't seem to keep myself hydrated and nutritionally well.
It's just trying to keep moving forward one day at a time! Good luck and best wishes for improvement in your situation.

I certainly hope you can get some answers at the Mayo Clinic. It is so hard when you know something is not right, but they can't give you any answers. I see my GI tomorrow. As soon as I finished the antibiotics the pain, diarrhea and urgency is back. How long has any of you stayed on antiobiotics? I was on about 3 weeks and my pouch felt good. I don't know if the anxiety through back to a flare or getting of the antibiotics? Anyone have any thoughts?

I've had cases of pouchitis that were very evident with urgency and frequentcy. Other times it was like I hardly noticed but the Dr was calling it that. I think I stayed on Flagyl/Cipro for a month one time. I don't like to take it that long. All it seemed to do was calm the frequency, urgency and occacasional pain. My last pouch inspection showed ulceration and inflammation past my pouch too. I've been assured repeatedly I DO NOT HAVE CHRONS. we'll see.

Dear Hoping,
Everybody above has given you good advice and they are so right about suffering anxiety and in my case depression too. My Internist prescribed anti-depressants after my take down plus xanex for my anxiety. My first attempt with a therapist was not helpful. He didn't seem to think anything was wrong and I needed a some more time. My Internist said to not waste time with him and find someone else. It sounds like you found someone that you feel comfortable with. If s/he doesn't seem to be helping you please find someone else that can help.

Other j & k-pouchers helped me to realize I probably had PTSD. I couldn't drive much less leave the house by myself. My wonderful step-sister told me to look for a therapist that used EMDR for PTSD therapy. If you look it up please note the therapy has evolved and doesn't involve actual "Eye Moment" and lights anymore. When I first read about it I thought it sounded like smoke and mirrors My therapist was a God send. I discovered that my PTSD anxiety wasn't all due to the surgeries. I've had other traumas during my life that factored in. It's like the surgeries added to those traumas tipped the scale that pushed me into PTSD. I feel for you and dehydration as I've had and do have problems with it too.

You will discover that needing to treat cuffitis and/or pouchitis more than once isn't that uncommon here.

Take care

I don't know if you are a spiritual person or not, but I have found that seeking spiritual outlets have eased anxiety for me. For me it means religion, it also means other things outside religion. But my faith makes my mind less permeable with regard to anxiety.

Also, an idle mind is the devil's playground (figuratively speaking). If this is true for regular civilians, I imagine it is much more the case for those of us who suffer regularly. I would advise you to search for things you enjoy and try to get joy out of life.

I know it can be hard to digest, but you can control your own mindset with the right tools and patterns. I would suggest reading up on cognitive behavioral therapy.

I would also leave you with the notion that pain is mandatory, but suffering is optional.

Last, I would like to leave you with the simple statement from one human being to another that you have my sympathy, love, and prayers, and that tomorrow is always another day for you to shift from suffering to coping to cherishing your life.

Thank you for your kindness. I also get my strength from religion. There have been many days I feel like I could not have made it without my faith. I am doing better and am seeing a therapist that is helping me try to find my joy again.

Hoping, I'm glad to read that you are doing better and have a therapist you like!

TE Marie, Hi. Did the EMDR help? My daughter has been diagnosed with anxiety and PTSD, and is still in therapy and taking anti anxiety meds. There is only so much input that I have, or could suggest, but I have looked into the EDMR in the past for her to possibly try, but she never did it. If it could really help maybe I could tell her it was a positive experience for someone? Thank you.

Dear Susan,

EMDR did work for me. My therapist was in a horrible accident and had to abruptly quit working so it's been over a year since we did it. It doesn't matter much now because when it bothers me I am equipped with tools to deal with those things and talk to my therapist about it. I'm still in cognitive behavioral therapy with another counselor.

Becky has been though so much, my j-pouch related surgeries pale in comparison. I recommend she check it out.

How is her health pouch wise??

Thanks Paulette. I will attempt to suggest it. I don't know if her therapist or doctor are familiar with it, but they should be. When I read about it a few years ago it had something to do with eye movement. After you learn it then can you help yourself? Not talking about quitting therapy, just thought if she learned it and could help herself, it could help with panic attacks, etc.

This seems to be the main focus for now.

Hoping - What you are experiencing is totally normal (and expected)!!!!! I can't emphasize it enough!

Do you know that 90% of Serotonin is stored in the GI tract? Google it to make yourself feel better. People with pouches are supposed to have problems with Serotonin (and therefore anxiety and depression).

I couldn't tell from your post if you are a woman. If so, give yourself a break! You are likely going through menopause as well. If your a man...Be thankful that you aren't a woman!!! ...at least you don't have that to worry about.

So, yes, get help ASAP. Personally...I am a fan of Zoloft/Trazadone.

For intense anxiety moments:
1.Hold your breath as long as you can 1 time only...(and obviously not while operating heavy equipment!). Your body calms automatically as it focuses only on needing air.
2. Hum...a lot!...even put on your favorite song. And when you breathe in, breathe through your nose. The humming vibrates something in your nasal area that releases calming chemicals.
3. Focus on something else that requires your attention. Crossword with a friend? 1000 piece puzzle? A funny show....
4. If all else fails, an occasional Xanax does the trick! I do this mostly if it is before bedtime or in the middle of the night.

Just keep in mind...Something bad will happen!!!! To you, to me, to everyone. Who knows what it will be? Usually not what you think. That is the nature of life. I have accepted that and find relief in the knowledge that it is coming. But, I know that a lot of joy also lies ahead, no matter what the circumstances. I have been a poucher (with chronic problems) for 17 years, and I think that I am one of the happier people that I know. I figure...I really should be dead, and it is only the miracle of modern medicine that has gotten me this far. So, I wake up every day surprised and grateful that I am still here, and I make the most of the day that I have....even if it is just going to the bathroom!

Hang in there...you can do it!

@ VarieK,

Your post was uplifting for me and I bet many others will agree.

Great post Valerie!
Sharon

Valerie,

Thank you so much for your post. It does make me feel better to know that I am not the only one experiencing these things. I am a woman so I do get the double whammy! I had no idea about the serotonin! I talked to my therapist today about this. Most days I am feeling better. Today was not one of those days though. I just broke down crying and have not been able to stop. Just feeling overwhelmed. The gut pain has been not been pleasant either. I know it will get better. I just really appreciate the place to vent and get feedback. - Hoping

Some of the smalles things can cause panick attacts. I had dry eyes so started puttinhg eye drops in my eyes a few times a day, started having the wiggles in my left eye the one I put the biggest amount in and then a migraine headace. Finally I read the lable and it said not to use more than 2 times a day and I was doing it more then that. When I went for my eye check up I was telling the eye Dr. and he said" oh yes it has a drug in it". I stopped and no more anxiety attacts, vision problems and migrains, I drink lots of coffee and never have a headach so I couldn't figure it out, I was thinking what the heck is wrong with me.
such a little thing to do so much harm to nerves. fyi my 14 yr old pouch hasn't given me any problems since the first couple of years, and that just took a getting use to, so I knew it wasn't connected to the pouch.

I now suffer from huge panic attracts and my doctor put me on Klonapin 1mg up to3 a day if needed. It really does help. My issue is my depression I am on wellbutrin 100mg 3 times a day and I chew them to make sure they get absorbed. Talk to therapist and went to psychiatrist and she tried me in Lexapro, Celexa and now 60 mg of Prozac. I am a walking zombie and have weaned myself down to 10mg a day. I cant live my life in a fog one doctor suggested I think its Elavil. I have to take Belladonna/Opium supp. every 12 hours and that alone make me very tired, but that is something I have to take for j pouch. There are so many antidepressants out there that does not make you tired, gain weight and feel worse on them. So scared to try another one.

I've had many j pouch problems that left me with anxiety. I take Lexapro and on occasion lorazepam. It's been 15 years. When things r good I am ok. As soon as a problem comes back I'm a mess again. Unfortunately for this disease it seems to be the norm. 

Valerie,

You are inspirational.

The very true and sad thing here, is the very condition itself could have been stopped in the first few months of its beginning, if only Doctors and Pharma were not ,"Big Business". For a real example, read my post i just put on today,"Colitis and how to beat it" told to me by one Honest Doctor who told me first hand, they knew of this many years now but are told not to tell people of it because it is not FDA approved. He doubts that is the reason. He told me that there would be millions less patients and prescriptions if this was a known public fact and if it was used as a preventitive natiural medicine.but added he would lose his license if he spoke up??? "IT IS WHAT IT IS".Your story sounds like you have been through so much. I almost committed suicide because of what was happening to me. I thank God every day for what he did for me. I truly hope you will feel well for all your days my friend. Bill wilson