Jennifer, THANK YOU SO MUCH, for talking about this! I have been blessed with a family who have supported me through all of this (1st surgery 4/24/12, 2nd surgery 6/15/12) They are still supportive today, but I, on the other hand, am feeling very down and depressed. Like a big burden most of the time. Anxiety is setting in that I won't ever feel "normal" again, whatever that is. It's been a long 5 years, waiting for the right diagnosis, from doctor after doctor, one who said I just had a nervous stomach, well yeah, that and UC. I need patience and the knowledge that I'm not alone in this and if I feel sad then that's ok.
Thanks for the venting opportunity!

Evening

Has any MD tested you for thyroid disorders.They can minic depression and menopause.Also has anyone tested you for absorbing nutrients in vitamins to see if your body functioning properly.

just a thought
Cassiecass

Hi
I don't know why but the medical profession seems to think that people can go through extreme pain for months and months and not have their mood drop on them. I have worked in the mental health field and one of the things that keeps your mood up the best is exercise. Yah, right! How do you do that when you are running to the bathroom every five minutes or doubled over in pain. So, after you are checked for low iron, thryoid problems, and blood sugar levels you may want to consider an anti-depressant to help with the mood if it drops. No - you are not abnormal! No, you are not weak! I would like to see those people who are judgemental go through half of what those on this wedsite face and maintain a happy bright mood inspite of everything (amazingly, there are some of you that are able too!). Those that can't (I'm one of them) it only means that the chemistry in your brain is reacting (which is normal) to the challenges (ie pain, bathroom trips, anethetics, pain medications, inability to get exercise ect)that are interupting your normal ways of enjoying life that assists your mood to stay bright. I had problems with my mood following the first surgery to remove my large colon. My mood dropped like a stone and I suspect that it was the medications and anethetics that was the cause. I was already on anti-depressants (after years of suffering pain) so had to have it adjusted upward. I was fine after that and am glad I reached out for help at the time. I can be pretty stubborn and when I had thought of killing myself I thought to myself that I didn't go through all that pain from surgery only to end things now....I still have some living to do so I got help. I was told by a Psychiatrist you do not want to have your mood stay low for too long because if it does it causes the brain to change making depression harder to treat. I am not talking about up and down moods that are normal; I am talking about feeling sad for over two weeks and it may be accompanied by thoughts of suicide. It's more difficult for us with UC and Crohns to determine if it is depression by vegitative symptoms (ie lack of appetite, low energy, sleeping all the time or having trouble sleeping) because these symptoms come with our medical/physical conditions. However, feeling suicidal, avoiding people (also hard not to do if you are in pain or have friends who don't understand) or feeling down all the time even if the pain lets up and you have a break in the on slought of symptoms is not normal if it goes on for more than two weeks. I encourage you to get help if you need it! Also, there are different anti-depressants that work differently for individuals and sometimes it just takes finding the one that works for you. If you have tried three and it hasn't helped see a Psychiatrist. They are experts on these medications. Your mental health is just as important as your physical health. Oh, and yes the physical body is connected to the brain and your emotional health is affected by your physical health and visa versa.

so I got an awesome response from stpaulmom and then 2 more posts that suggest I get help. I don't need help! I am fine!
See, everyone assumes treatment is necessary. I was sad and it's OK. My life sucked! I don't need drugs or counselors. Since when did it become unacceptable to be sad? I love the fact that I was so low because now I appreciate everything so much more!
Just to repeat: I can get sad without it meaning I have a problem! That is my entire point! People should not be made to feel they have a problem when they are just reacting appropriately to unfortunate circumstances.

Hi Jennifer,
Thank you so much for posting and being so honest...I know exactly how hard this disease is on the body and the mind and even more so on the family and friends...I paid the price numerous times.
One of the things that my family reproached me was my saddness. I fell into deep periods of sadness very young and they treated me like I was nuts, bad, stupid, attention getter etc.
I was sad because my guts were in horrible pain, cramping, knots, bleeding and no one was listening. No one was helping and no one believed me.
I was incontinent in grade school, junior high and high school. They would have been depressed too! Soiling yourself in school is not the best way to make friends...niether is being on cortisone. People made me feeling guilty for missing school, being tired and not participating in sports or outside activites.
I did not need prozac, I did not need zantax (if they had exisited back then)...I needed surgery! I needed a cure not a 'happy pill'...I needed a human being to listen to me and act accordingly. It took a visit to Dr Cohen's office and the possiblity of having a K pouch done and my colon removed for the sadness to stop and my life to begin.
I agree with you that we need to learn to be sad again, need to accept sadness as a normal part of life and not confuse sadness with depression. Depression is a disease that requires some sort of treatment, sadness is a normal reaction to a given situation and will pass with time or with a change of situation...if we medicate sadness then we cannot accomplish the work that is needed to get past it (mourning of a death, the end of a relationship, facing an illness)...I do not tell people not to take prozac or other medications if NEEDed but I do not believe that it is candy and should be taken whenever we feel like it. It is still a drug and requires a doctor, a prescription and follow up and was not designed to be a lifestyle choice for healthy people...
So thank you Jennifer for showing us that sometimes it is just a solution that we need to our problems and not to be druged into submission.
Sharon

Sharon, thank you for sharing! I think so many people are made to feel worse when they get sad.

I can definitely relate to your post. As I have mentioned in other discussions, after my UC and emergency surgery I went through a period of anxiety and depression. I ran into problems when I saw a therapist who tried to approach/treat my anxiety/depression as if it had evolved separately from my UC, surgery and multiple complications. She basically dismissed the fact that I had been critically ill and that I would have died without surgery. I was not happy with the therapist and generally found the experience frustrating. I wanted to talk about how UC and the surgeries had impacted my life, how I was worried about my future, my ability to work, my quality of life, fear of getting sicker, etc, etc. The therapist was trying to teach me "time management skills" so I'd feel less stressed. NOT THE SAME THING.

Anyway, I think more doctors/nurses/therapists need to recognize that an illness can be a life changing event much the same as a physical trauma or accident, and one that is not limited to just physical symptoms. A lucky number of us manage to get through this without the emotional component, but for those that don't, appropriate supports need to be in place. It doesn't mean that people who get depressed after their surgeries are "crazy," rather we are having what I feel is a completely legitimate reaction to a massive life changing event, and we shouldn't be made to feel bad or guilty or that we somehow haven't adjusted as well as others expect we should have, or moreover, that our emotional reaction represents some other problem or illness separate from the UC. Not to say antidepressants or therapy aren't helpful to some, but I do think we have to be careful how we view and approach each case.

As I've said many times before, if you are struggling and feel you would like to speak to somebody, ask for a referral to a therapist who deals with chronic illness.

"Normal reaction to an abnormal situation"

They sent me to a class on "critical incident stress debriefing", apparently someone must have thought that I had a "kind" face or something. Anyway that is what I got out of it. Basically people have all kinds of coping skills and do all kinds of things when they have their asses handed to them and it does not mean that they have went off the deep end. Not to say that depression or sadness is the "deep end" but significant others see it as such and try to help.

Did I tell you the story of the woman who had an early miscarriage and locked herself in her bedroom? Her husband decided to call over his family, her family, the neighbors and the state police to help her? WTF!!

My wife, bless her heart, kept insisting that I must be depressed so I finally went to my family doctor and he gave me some prozac. I took it for a while and my guts still felt like hell so I stopped. I never did see much difference.

I would compare this whole experience (the bad times) to getting hit in the head with a hammer repeatedly. My problem is not that I feel sad or that I am not my usual self, the problem is this effing hammer!

Ethumb, love it, thanks!

There's nothing wrong with sadness. There's nothing wrong with being depressed in a depressing situation. I remember how low I fell between surgeries (any lower and I wouldn't be typing this right now). There's a huge difference between clinical depression and what I guess I'd call situation depression. This can be some pretty devastating stuff. If there was no sadness, how would we know what happiness was?

I am with you all. While I never suffered with any significant depression or anxiety during my decades with UC and 15+ years post op, I had my moments of feelings of defeat and disappointment with my body. I probably am overy optimistic (which I am sure gets on the nerves of those I am close to). I've even had doctors ask me how I could be cheerful and smiling through uncomfortable procedures. My response always was: whining and complaining just makes things worse.

What's all this blather mean? To me, it means there is no right or wrong when it comes to how you respond to constant pain, diarrhea, bleeding, and malnutrition. What helps you cope is the right response. If you think there is too much impact on your life, it is also OK to seek therapy or drug treatment.

Jan

Spooky, you reminded me of the first therapist I went to see. He had the "yet" diagnosis. Instead of asking me diagnostic questions he said I'd be ok with time. For example instead of saying I don't want to get out of bed I should think I don't want to get out of bed - yet. I'm depressed because I can't work (yet). And so on.

My Internist told me to quit wasting my time with him and I found a wonderful therapist that deals daily with chronic pain as she has had chronic pain. She went through the proper diagnostic questions with me to determine what my "issues" are. My Internist and my Insurance company's Nurse case worker told me I needed therapy because toughing it out and medication was not getting me out of my funk. We all can be situationaly depressed but sometimes the way back involves too much for us to deal with ourselves.

I'm happy for everyone that is feeling well and can relate to having some family members and friends not understanding all you are going through. There are many of us that are not back to feeling well and do need therapy, antidepressants, anxiety medications in varing degrees. We are not weak because we need help. Each of us has a different story, such as; additional illnesses we are dealing with simultaneously, have been sick longer than others, had other traumatic events and/or times in our lives and the list is endless.

I do not want anyone just starting down this road to think there is something abnormal about their depression and/or anxiety and to not seek help. Maybe they need medications and/or see a therapist as the "yet" therapy isn't working for them.

Well, this blog comes at a good time for me since I have been crying most of the morning. I guess I am having a SAD day for myself. My life has changed alot. The takedown has not gone according to my plan. Still on a picc line although, it is every other day. The pain is there still. Is there ever going to be an end to pain? Oh, how about fatigue, too? I can't see the light at the end of the tunnel, yet.
Trying to keep the faith............

Roberta

toughenough - the problem is not that people are afraid to seek help! the problem is too many people try to medicate a problem unneccessarily! Everyone is told to get help! Everyone is made to feel like they have ANOTHER problem. it makes me sad. If you are depressed BEFORE the illness or long AFTER you've healed well then... go get your medication! If you're depressed cause youre sick, maybe you need something other than meds... like support.
Recovery can take a long time. It's a hard road to walk. No one said it is easy! Very few people understand. Just remember it was the anti-depressant that almost pushed me over the edge! When we are already taking so many drugs isn't adding another one a crap shoot? I may be the minority opinion on this topic but I stand by it! Tooooo many people are on drugs today for everything and anything and I think it's dangerous. Heck, I have unvoluntary twitching from remicade now . You never know what will come from all this drug use!

Roberta,
Sometimes a good cry does us good. I hope you have something for your pain. I definitely had higher expectations for what happened after my surgeries too. I already had fatigue as have fibromyalgia too but it is worse now.

I feel much better than I did at your point of recovery. It can be a slow process. There are some days you seem to go a backwards instead of forward. If you look at things by comparing how you feel today than a month or two ago you will see progress.

Keep on keeping on....

I feel hostility directed at me from your post Jennifer. You don't know me or anyone else on here enough to judge us.

You don't need medication or therapy - great but some of us are not so fortunate. I am not advocating that anyone take medications that are not needed and if that is what you got out of my post you misunderstood it.

Judge not least ye be judged.

Plus all antidepressants are not the same. I have tried several that were horrible for me even tho they work wonders for others. If anyone feels worse when taking any medication they need to address it and wean off of it under their doctor's care.

I think it's very disappointing that those who went to find help didn't find appropriate help. Even in undergrad psych, we learned different areas in which to judge emotional difficulties. One was "appropriateness" - if your life is sounding like a country song or if you have a hammer beating you over the head, then of course you are going to be down! Similarly, if somebody close to you dies, you are going to be sad! You don't have long term depression. Another criteria is if your problems interfere with normal life. That's where it gets shady for those with chronic problems. Are you sleeping all the time because you are depressed? Or is your body just worn out? Standard medical doctors are going try and give you a pill. Psychiatrists (who prescribe drugs) and counselors (who talk you through situations) should be more likely to look at your whole situation. Drugs are supposed to go hand in hand with counseling, although that doesn't always happen.

I've taken medication for several years for generalized anxiety (before being dx'ed with UC). I have to say it was a life changer for me in a good way. However, my anxiety level is probably higher than "normal" right now...because I'm facing my first ever major surgery! Plus, just living day to day with "will it hurt to go to the bathroom today? Will I have an accident" - is enough to cause anxiety in itself. I haven't upped my medication because the anxiety is situation appropriate. Medication isn't meant to "hide" depression and anxiety, merely make it more manageable and put it at a "normal" level. Right now, I think I'm feeling like a "normal" person would.

My psychiatrist did say something interesting to me, however...and this mirrors what somebody said earlier about depression length. She said that those who have dealt with anxiety/depression (in whatever capacity) are more likely to "default" to anxiety and depression. Especially after anesthesia. It's the way the brain ends up getting wired. So even if you are in a situation where anxiety/depression seems appropriate and temporary, it might be helpful in the long term to get help - if you feel that you want help.

A counsellor's job (a good one that is) is not to talk us through a situation but rather to listen as we process emotions about often horrific experiences for those with Crohns and UC. A lot of our problem is that people don't listen - they are too busy giving advice when they have never experienced what we are talking about. That is why I like this site because I am writing to people who have been there and really understand what I am going through.
Having acknowledged the help you have all given me I also have found that I am one of the unlucky ones (whether genetics or for some other reason) that needed help to get through and so medication was welcomed. When I talk about taking medication if (operative word here) you need it there is no shame in that. You are not weak minded or have a character flaw. I also don't mean to say that you should reach for a pill anytime you feel sad. I am on anti-depressants but still go through the normal ups and downs of situations that hit me and that would be normal to feel up or down about. Sadness is normal; every bit as much as happiness. However, when you find the sadness doesn't go away for weeks and even when you are doing something you normally found joy in doing but have this cloud of sadness that clings to you then depression may need to be considered. Certainly if you are feeling suicidal because you are so sad then taking a pill is a much better alternative than ending your life. Clinical depression is not the same as situational depression (ie: grief). We are all experts of grief here on this site as we grieved much - loss of freedom to eat what we wanted, when we wanted, loss of quality of life, for some loss of relationships or loss of jobs ect. The list goes on and on for the losses that we may experience with our illnesses. My point being is that we move past the grief and get on with it -- it's when we can't get on with it that we may need some help. What that help is will be different for each person...talking with a friend, doing self-care (a bath, a walk, seeking spiritual comfort)seeing a counsellor, taking medication, etc. I am only advocating that you take care of your mental health equally as much as you are taking care of your physical health - to find wellness we need to attend to both.

Linda2 your post was beautifully said. I bet we all agree.

We can not compare ourselves to others for many reasons and a big one is that our illnesses are not all that defines us. Some of us are dealing with other life experiences such as abuse, divorce, death of a child, loss of our homes, bankruptcies, nasty work places, horrible personal relationships - the list is endless.

For us that have had traumatic, depressing and/or anxiety events before and/or during their illnesses and eventual surgeries, complications etc. as well, it's like this was the straw that broke the camel's back. Some find it harder to compartmentalize life's events than others and are now dealing with much more than our illnesses.

I have said many times that I'm down to my last nerve........

You are all right in that our board is one of the few places we receive understanding. I found out which family and friends mattered in the way they treated me while sick and recovering from these surgeries. Many try to understand us and mean well. I appreciate everyone but know that what happens the rest of my life is up to me and no one else can do the work needed but me.

i was not being hostile toward you toughenough, sorry if you took it that way.
I keep saying over and over, if you need drugs for depression GREAT! If it helps you GREAT! No shame in taking meds for your issues. The point was to talk to those of us who are being called depressed and pills are being pushed on us when we are really just reacting in a healthy way! Drugs aren't the answer for EVERYONE, and I'm tired of that always being the "solution" to a person who is bummed about their situation. Those who are pro drugs... no need to post all the extras here. I've made it clear that this post is about OTHER options.

quote:

Drugs aren't the answer for EVERYONE, and I'm tired of that always being the "solution" to a person who is bummed about their situation. Those who are pro drugs... no need to post all the extras here. I've made it clear that this post is about OTHER options.

Good point Jennifer. When it comes to drugs curing a physical illness, that's whole other ball of wax. On the other hand drugs curing a mental illness such as depression will always be open to debate.

I'm sorry I took your words the wrong way Jennifer. I think we all agree with you.

Thank you for talking about this, I have sufferered from depression during and ever since my surgery. I feel like it is a side effect the doctors never warned me about. What we face everyday is hard and we rarely feel like we can talk about it to anyone which makes it even harder. All we have is the hope in our hearts and the strength of our minds x

I'm sorry to hear you are depressed too Lou_Lou. The surgeon never told me either. They cut and go onto the next surgery, besides the after surgery check ups. As far as they are concerned they fixed us.

I hope you are finding your way through it. It's another hidden illness that people can't see so don't generally understand.

Lou-Lou
I am sorry too to hear that you are having difficulties with your mood. You are right tough enough in that the Surgeons cut into us and that's where their work ends and our work continues. Hopefully we heal without problems but many of us don't have a smooth road to recovery. It can get very bumpy along the way! Some of us heal and then start having more problems later on. It's hard and it affects the whole of us not just one part(that is just the colon or j-pouch). I hope that you find your way back to mental wellness Lou-Lou whether by trying of what I suggested in my earlier post, which may or may not include medication. It is too bad that the Medical Profession seems to want only to focus on the physical without addressing and giving support for those "messy emotions" humans feel. Probably if we had the right type of support from the start we wouldn't have our moods dropping to the point where depression sets in for some. When we try to talk about our mood...yes, some professionals can start pushing pills too quickly and saying "Oh, you have depression" without properly assessing whether this is a normal response or a "true depression". I mentioned some of the symptoms of a true depression already. Loss of pleasure in doing anything that you used to enjoy for more than two weeks is a major symptom. Feeling sad most of the time and can't get past it, can't get motivated to do anything and for some having suicidal thoughts and/or planning how they would do it.
There are so many ways that our mental health could be supported for those with chronic illnesses including helping us to find coping strategies. I find for myself meditation, breathing exercises, accessing this site and now that I am well going for walks, and pampering myself by getting a massage or a manicure or a hair cut. The list is endless but I am well now so I can do these things whereas before I couldn't. Yes, I choose medication because I couldn't do most on my list that would help to lift my mood naturally and give me breaks from the constant sadness inside that hung like a cloud over my whole life. I couldn't go hiking for quite a few years prior to and following the surgery and that had always lifted my mood the best for me. Lou-Lou if you can find something that gives you breaks from the sadness do it! Exercise has been shown to help the most but that isn't always easy if you are having pain or running to the bathroom. Watch a funny movie, look for jokes on the internet, think about something that makes you happy, meditate ...anything that helps your mind to feel some joy and if that doesn't work then see your Doctor because if you have depression you can't just wish it away. You can't just pick up your boot straps and keep going because depression in itself makes it very hard and then adding your physical illness can make it extremely hard. Again it is not a sign of weakness or a personality flaw. They can see changes in areas of the brain on MRI's of patients with long-term depression so don't leave it untreated for too long.

Jennifer

I am sorry to hear that you went through so much without support from family. It is hard for others to understand and I found that in my family as well. The labelling is the worst! We are people first and not a label! Yes, you are right that Medical Professionals seem to just keep adding the labels instead of taking the time to listen to their patients without judging then trying to fix us based on their misconceptions. I had trouble getting a Medical Professional to recognize I had a problem (the first incompetent Specialist did a scope and saw nothing) and then when they took me seriously (went to another Doctor) they gave me a label (UC) and pushed prednizone saying it is very bad for me but didn't offer me another alternative that worked. I have had Doctors accuse me of it "all being in my head" meanwhile the physical illness was killing me. I had Cushings Syndrome from the prednizone and one Specialist said it was just the regular side effects of the drug. Another asked me if I used a cane and why didn't I and I had to say to him aren't you the least bit curious about why I am so sick? Yes, you do have to advocate for yourself or if you are too ill and lucky you can have a friend who is pushy and won't back off when the Specialists don't want to help. When I think back on everything I went through over the years I could write a book about negotiating the Medical System. I guess that's why I work in Social Work in a Hospital setting now so that I can support others with chronic illnesses and struggling to be heard. It's amazing what you learn when you listen....and don't judge or have preconceptions about a person!

Thank you toughenough for the words of encouragement. You are right, I have made baby steps to getting better. Still not fast enough for me. When you have no control over your future anymore, it is difficult to grasp.
As far as meds for anxiety/depression I am against them for myself. However, if someone needs them then by all means make sure you have a great doctor.
I have learned through yoga and life's experiences on how to deal. The only thing I am having trouble with is dealing w/pain. I haven't been able to get to the yoga class and that is what helped me w/UC. Trying to do it at home and just isn't the same.
I guess life could be worse! Trying to keep the faith!
Roberta

Roberta,

I hope you can get back into your yoga soon. I have horrible foot problems that range from pain to numbness and hot to freezing. I've been to 5 doctors and through all the testing including and MRI or my right foot the consensus is the foot doctor says it's caused by fibromyalgia and the rheumy says it's not caused by fibro. I can't do the poses anymore. I should get my CD out and try to do the poses that I can that do not involve my feet but that doesn't leave me too many.

When my UC flare from hell began 6 months before my surgeries my fibromyalgia also started flaring and my feet right along with it all.

I'm just another autoimmune mess. When the weather cools some I'm going to try walking again, even if it is just around the block.

You will be feeling better in a few weeks or so and hopefully you can get back to yoga.