I've had my first surgery 13 years ago with a lot of others in between. Not only for the pouch, but for my eyes, gallbladder as well, as other illness, I find that my nerves are so shot that even if I get a common cold I go into really bad anxiety attacks. This is getting worse and worse every year. I am now facing another major health crises that I am reduced to popping lorespam to stop me from shaking. I still take a anti depressant all these years. How is every one else doing?
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Hi Ally,
I think it's time for me to chime in. I've posted about this in the past, but I had anxiety/PTSD which hit a few months after my emergency surgery. I had a very rough patch but got over that, and actually had a pretty good 4-5 years.
Lately, however, things have started getting rocky again. I've had some episodes of intermittent bleeding since October, and I ended up in the ER over the Christmas holidays. I was given a two week course of antibiotics with no change, I had a scope which didn't show anything in the pouch (the problem is suspected higher up) and I'm finally going for an MRI enterography next week. While all this was going on, however, I got a bad cold, the cipro/flagyl gave me really bad fatigue/nasea, and with all that, I'm finding my anxiety has kicked up all over again. It's been bad enough that I'm debating going back to the doctor to discuss antidepressants, even though I didn't tolerate them well the last time (I was on cipralex which I stopped taking after two weeks). But I have a busy, demanding job and social life and I can't afford to have this anxiety which has really started to become a roadblock again for a lot of things.
I think our illness and experienes do make us more prone to these problems. I just wish I knew how to deal with them better. :/
I think it's time for me to chime in. I've posted about this in the past, but I had anxiety/PTSD which hit a few months after my emergency surgery. I had a very rough patch but got over that, and actually had a pretty good 4-5 years.
Lately, however, things have started getting rocky again. I've had some episodes of intermittent bleeding since October, and I ended up in the ER over the Christmas holidays. I was given a two week course of antibiotics with no change, I had a scope which didn't show anything in the pouch (the problem is suspected higher up) and I'm finally going for an MRI enterography next week. While all this was going on, however, I got a bad cold, the cipro/flagyl gave me really bad fatigue/nasea, and with all that, I'm finding my anxiety has kicked up all over again. It's been bad enough that I'm debating going back to the doctor to discuss antidepressants, even though I didn't tolerate them well the last time (I was on cipralex which I stopped taking after two weeks). But I have a busy, demanding job and social life and I can't afford to have this anxiety which has really started to become a roadblock again for a lot of things.
I think our illness and experienes do make us more prone to these problems. I just wish I knew how to deal with them better. :/
I really relate to what both of you are saying. It's "normal" to get situationaly depressed and anxious when health problems crop up. As if anything about our situations are normal. Plus there is the gut brain connection. We have lost that and I think some of us, me anyway, might have to be on something like an antidepressant forever. My daughter just read a book, I don't remember the name of it, explaining we are now missing some gut to brain chemical(s).
I know exactly what you are saying AllyKat. Facing the uncertain future and or stress lead me to have times when I'm taking xanex to control my hands and insides from shaking and have days I can't get out of bed.
I have a long list of other health problems too, including fibromyalgia and neuropathy in both of my feet. When walking it feels like I'm walking on a cross between marbles and broken glass, they also feel horrible at rest too they go between numb to cold to hurting so bad I cry. I'm going to a neurologist who says the neuropathy I've got can't be reversed and he hasn't figured out what caused it, yet. He's put me on medication that took out the pins and needles feelings and I just can not accept that's it and what's going on is permanent. I have to use a cane some days as my balance is all thrown off too.
My take down was over 2 years ago and you guys are veterans. You've both helped me with your grace and advice. I wish I had something to suggest to make things better for you. I'm stuck with chronic cuffitis and abdominal pain plus it looks like chronic c-diff infections too. I'm taking more medication than before my surgeries and can not figure out how to improve my health. I'm on disability and I wish I could work. This sucks.
I know exactly what you are saying AllyKat. Facing the uncertain future and or stress lead me to have times when I'm taking xanex to control my hands and insides from shaking and have days I can't get out of bed.
I have a long list of other health problems too, including fibromyalgia and neuropathy in both of my feet. When walking it feels like I'm walking on a cross between marbles and broken glass, they also feel horrible at rest too they go between numb to cold to hurting so bad I cry. I'm going to a neurologist who says the neuropathy I've got can't be reversed and he hasn't figured out what caused it, yet. He's put me on medication that took out the pins and needles feelings and I just can not accept that's it and what's going on is permanent. I have to use a cane some days as my balance is all thrown off too.
My take down was over 2 years ago and you guys are veterans. You've both helped me with your grace and advice. I wish I had something to suggest to make things better for you. I'm stuck with chronic cuffitis and abdominal pain plus it looks like chronic c-diff infections too. I'm taking more medication than before my surgeries and can not figure out how to improve my health. I'm on disability and I wish I could work. This sucks.
It does suck; I feel so much for both of you, especially because compared to a lot of people on this board, I'm mostly doing very well. Sometimes I feel I don't have a right to complain! My problem is, once the anxiety kicks up, it kind of becomes an entity unto itself, until it becomes hard to know exactly where the anxiety starts and ends vs. my other health issues. I'll freak out over everything--i.e. is this a new symptom, or am I just anxious? It's a vicious cycle. I find I worry quite a bit about my health, the future, what could be wrong with me, etc, and there is this perpetual sense of dread in the background that the other shoe could drop at any time--even if I know the worry is out of proportion to the situation.
I admit the anxiety caught me off guard this time. It's one of the things I thought I'd dealt and moved on from, but it only took a couple of recent health scares to churn it up again. It's amazing the impact the illness, these surgeries and their aftermath have had, even now almost 8 years later.
I admit the anxiety caught me off guard this time. It's one of the things I thought I'd dealt and moved on from, but it only took a couple of recent health scares to churn it up again. It's amazing the impact the illness, these surgeries and their aftermath have had, even now almost 8 years later.
Alley,
I understand perfectly...Every single time that something else kicks in (galbaldder, hernia, flu etc) I go into 'resignation mode'...I am resigned to accept the worst because my body just does not heal/react like other peoples' do and even a minor illness usually turns into a full blown problem for me...although my panic/anxiety is interiorised and comes out as a mild/major case of bulimic activity (I jump on chocolate or sugar to calm myself down) or stress....I am fortunate that aside from pouch or joint problems I do sleep reasonably well and that is a major factor in healing myself both physically and mentally (I always told my hubby that napping & chocolate are my drugs of choice)...right now I am fighting a chronic brochial/ear/nose/throat infection + flu and I have the feeling that it is never going to end...I have finally found some work and cannot allow myself to miss a day so this is a major stressor...
I think that none of us get through this disease unscarred or unchanged...we do our best to navigate the traps and pitfalls and mostly pray that we are healed but I am not sure that the anxiety ever really go away...
The problem is that no one gave us a 'get out of jail for free' card against all of the other diseases and illnesses out there...So we have to deal with all of our stuff plus all of the normal stuff that is never really normal any more...
Hugs
Sharon
I understand perfectly...Every single time that something else kicks in (galbaldder, hernia, flu etc) I go into 'resignation mode'...I am resigned to accept the worst because my body just does not heal/react like other peoples' do and even a minor illness usually turns into a full blown problem for me...although my panic/anxiety is interiorised and comes out as a mild/major case of bulimic activity (I jump on chocolate or sugar to calm myself down) or stress....I am fortunate that aside from pouch or joint problems I do sleep reasonably well and that is a major factor in healing myself both physically and mentally (I always told my hubby that napping & chocolate are my drugs of choice)...right now I am fighting a chronic brochial/ear/nose/throat infection + flu and I have the feeling that it is never going to end...I have finally found some work and cannot allow myself to miss a day so this is a major stressor...
I think that none of us get through this disease unscarred or unchanged...we do our best to navigate the traps and pitfalls and mostly pray that we are healed but I am not sure that the anxiety ever really go away...
The problem is that no one gave us a 'get out of jail for free' card against all of the other diseases and illnesses out there...So we have to deal with all of our stuff plus all of the normal stuff that is never really normal any more...
Hugs
Sharon
We can always find others that have worse health than we have. That does not mean we don't have problems. It hasn't been rainbows and flowers for any of us.
I most certainly have not had it as bad as so many people in here, but it has been no bed of roses. That's for sure!
I don't have anything new to offer. Only to let you know that I, too, can relate. I have suffered from depression for years and was fearful/anxious for many years post-op. After what I've learned in this forum, I am convinced a definitely suffered from PTSD for years.
Depression is the primary issue for me now, but I do still have tendencies toward being anxious and fearful. I also think I've got the potential for PTSD triggers when I am feeling particularly ill. I try to avoid "going there" as I've managed to put a lot of that aside many years ago. But it is sad that it looms in the background.
Sorry to ramble. Just want you to know that I can relate. I understand.
((HUGS))
I don't have anything new to offer. Only to let you know that I, too, can relate. I have suffered from depression for years and was fearful/anxious for many years post-op. After what I've learned in this forum, I am convinced a definitely suffered from PTSD for years.
Depression is the primary issue for me now, but I do still have tendencies toward being anxious and fearful. I also think I've got the potential for PTSD triggers when I am feeling particularly ill. I try to avoid "going there" as I've managed to put a lot of that aside many years ago. But it is sad that it looms in the background.
Sorry to ramble. Just want you to know that I can relate. I understand.
((HUGS))
Spooky posted:Hi Ally,
I think it's time for me to chime in. I've posted about this in the past, but I had anxiety/PTSD which hit a few months after my emergency surgery. I had a very rough patch but got over that, and actually had a pretty good 4-5 years.
Lately, however, things have started getting rocky again. I've had some episodes of intermittent bleeding since October, and I ended up in the ER over the Christmas holidays. I was given a two week course of antibiotics with no change, I had a scope which didn't show anything in the pouch (the problem is suspected higher up) and I'm finally going for an MRI enterography next week. While all this was going on, however, I got a bad cold, the cipro/flagyl gave me really bad fatigue/nasea, and with all that, I'm finding my anxiety has kicked up all over again. It's been bad enough that I'm debating going back to the doctor to discuss antidepressants, even though I didn't tolerate them well the last time (I was on cipralex which I stopped taking after two weeks). But I have a busy, demanding job and social life and I can't afford to have this anxiety which has really started to become a roadblock again for a lot of things.
I think our illness and experienes do make us more prone to these problems. I just wish I knew how to deal with them better. :/
What do you have PTSD from? Is it from experiences with IBD or other things? I'm sorry the question is too invasive! all the best <3 (I started cipralex 1 month ago, and its take away my suicidal thoughts, but im not 100%)
Hi Crystal,
We are all very different and react differently to our IBD journeys, depending on how severe or sudden the onset and surgeries were and how our lives were going at the time.
It is also a question of 'nature' vs 'nurture'...I think that some of us are rather 'bulletproof' to trauma (until we are not) and others suffer from trauma immediately or not.
I thought that I was one of the bulletproof ones. I had been sick my whole life, dealt with the worst again and again but being that it started at birth for me, I had never known any differently and thought that that had made me stronger than others.
Wrong. After years of dealing with my pouch (for better or worse) and creating a balance and accepting my new 'normal' I had a massive pouch fail.
I also live in a country that does not want to do or learn about k pouches so I was very much alone facing an aggressive medical world that only wanted to remove mine and throw it in the garbage. I felt like a medical orphan or pariah.
It caused massive emotional distress and trauma.
I fought for nearly 10yrs to save my pouch and I won, but the trauma was there...at every relapse, every complication, even if outwardly I seemed to be in control, on the inside I was a mess...shaking, sweating, sleepless, bulimic, short-tempered and in tears.
I did not go the medication route, or to see a psy...for me work is therapy, exercise and writing too...I spent hours baking and cooking, gardening, and climbing stairs...1000xs at a time with my music playing in my ears...somehow it put me into a sort of trance; I worked through my anxiety and fears that way.
Things calmed down and I finally got my pouch back and functioning.
I cannot say that it won't come back, especially with the advent of other illnesses, diseases and traumas but at least I found my own way to handle it and it works.
It is not because I am stronger or feel less (I have been accused of that) and it isn't because I have a better support system (if you know me, you know that I do not...not really) but...I found my personal key...that works for me...
We each have our own keys to our calm, serendipity, control or peace. It is very individual. Needing meds and not taking them, in my opinion, is the equivalent to breaking a leg and not casting it...things can only get worse...and why not use the medical options available to help you if you can?
I do not know if this helps you but I hope that it does.
Sharon
There is a change in our neurotransmitters to our brain when our colons are removed. That's why they say the gut is a 2nd brain. So there is a real medical basis why some of us need antidepressants to replace what we are no longer getting from our gut.
I started Propranolol for anxiety yesterday and it's amazing what one little pill accomplished after just a few minutes. My heart stopped racing, the tremors stopped, and I could think more rationally.
I've been dealing with abscesses and a fistula since Christmas and it has been complicated and upsetting. I've been seeing a hematologist for a few years for high platelets and each July when the residents change they all want to be the one to convince me to do a bone marrow biopsy (I have refused -- they won't sedate me in any fashion). They've diagnosed me with Essential Thrombocytosis anyhow. It's either a rare blood disease or blood cancer, Myeloproliferative Neoplasm, depending which source you read, although my MPN is non-aggressive and shouldn't (hopefully) shorten my life. So yeah, I've had anxiety through the roof. I had a panic attack when they put me in the MRI machine a few weeks ago.
I thought I was strong enough to take whatever was thrown my way but hearing doctors say one thing and not agreeing with them has put me in a bad way.
Before I had my j-pouch, I had to have a redo on a Pic line for TPN. I don't suffer from anxiety, but for some reason had a panic attack during the procedure. That happened almost 3 years ago and hasn't happened since. Very strange!
Happy Easter to all!
After reading all of your thoughts so far, I’m feeling less alone!
I’ve had 2 j pouches and 8 months ago received the Kpouch.
I’m not a candidate for an ostomy anymore .
So many things have happened that all it takes is the thought of a blood draw, which is quite an ordeal for me, to make me feel like I’d rather just die.
Medications must be crushed or liquids so not always available...
I get really depressed and easily aggravated with how life is now, afraid of the future.
It has helped to know others have some conflicted feelings also.
I know I should just be happy to be alive
Do need to connect with some other Kpouchers , anyone?
Actually I try to find some humor in this every day, just hit the skids more lately
Best to you all!
an,
I am one of the oldies on this site...I have had my k pouch in one form or another since 1979 after a very long and painful journey since birth.
I faced it all with courage and stoicism until I couldn't.
No one had told me about the colon/brain connection and that fact that our colons produce something that helps us keep calm? Stable? Emotionally balance?
Who would have guessed? (thanks for reminding me TE Marie).
It explains a lot...
If you wish to talk with k pouchers, share and ask questions you can go onto the Kpouch Korner here, PM me or come to Poucherlifestyle on facebook...it is my group where we discuss everything from recipes to anxiety on through...no holds barred.
You are not alone, many of us have live the same sort of hell as you and have come out of it, for better or worse, smiling.
As I say to many, our journey would leave a Strongman in a pile of whimpering tears. We are not weak but extraordinarily strong.
I ended up confiding in one of my classes in a very exclusive and tiny private school...they asked...I told them about my step 2 of K pouch creation when I woke up in O.R....malignant hypothermia...they could not re-anesthetize me....my heart stopped for a while...but obviously, I came back. 
Horrors...but funnily enough, it did not leave a trauma behind, cause me anxiety or fear...it just reinforced my view that we have a journey and it is not up to us to choose when or how we travel it...
I believe that life is to be lived with passion, no matter what...the passion to survive, to love, to give and to share...to help others and teach them in turn to help those who need them.
It helps me when I am down and my 'kids' appreciate it too.
Find something that you are good at...Singing, writing, knitting or dancing...doesn't matter...And do it with passion and joy.
Sharon
Thank you Sharon
I am not on Facebook, but will get on as I am really excited and interested in connecting with other Kpouchers!
Have followed this forum since 2006 without comments till now.
Have appreciated everyones help.
Janice