I know Ive had 3 surgeries in 8 months and it's a lot of recovery time ( in those 8 months I've also managed to finish my clinicals, get my masters in occupational therapy, and plan a wedding)! But now that the takedown is over I find myself being hyper vigilant and analyzing every nuance my body has, staring at my stool to check for the pinpoint amount of blood there, and calling my doctors thinking I have pouchitis 2 weeks in!

The feeling like its all going to come crashing down and I'm still going to be sick or my pouch will fail is ever present.

I feel so anxious now and almost like PTSD . Is this normal how'd you all feel? I've thought about seeing a therapist but do they have therapists who specialize in the effects of UC or an auto immune disease or chronic illness ?

I feel like I can work through it but im also sick of it. How do I get rid of this constant worry that I'm going to be sick again or everything will fail?

Did anyone have a mini post surgery mood issue? I've also notice I'm very labile for a couple weeks after surgery. Ahhhhh
Original Post
Totally normal and it does sound like PTSD. Many of us have experienced it - especially after everything is done. I think we keep it all together until takedown is done and we don't have anything to anticipate anymore. Sometimes a course of antidepressants will help. And there are therapists who specialize in chronic illness. Some people are able to get through this on their own, some find that talk therapy works for them, and some do the therapy/antidepressant thing.

If you do try an antidepressant, they're not all created the same and you may have to try another if the first one doesn't bring relief. (I was very lucky, the first one I tried turned things around completely after 2 days. They don't usually work that fast.)

I had another bout earlier this year but it was situational because I was quite sick - pulmonary emboli in both lungs which caused my heart to enlarge. They did a CBC and my Vitamin D level was just over 9 (30 is low side), Vitamin B12 was low and cholesterol was high. All of these were treated and I felt way better very quickly. I think you should talk with your doctor about your symptoms.

I'm sorry you're going through this. I know how horrid it can make your life.

kathy Wink
I have to strongly disagree with Kathy. What you may have is a form of anxiety not ptsd. You may find tremendous relief through coping techniques taught during cognitive behavioral therapy. The techniques are easy to learn and useful immediately.
The best reference may be from your primary care physician. Good CBTs often have long waiting lists. A referral from your doctor will bump you higher on the list. There are therapists who specialize in anxiety and panic treatments but any good CBT (cognitive behavioral therapist) can help.
There are also short acting drugs that will help if you have anxiety attacks which interfere with your ability to function. An anxiety attack may feel like an asthma or heart attack. Some people have severe chest pain and feel they cannot breathe.
PTSD is much more severe and should be treated by a PTSD specialist. PTSD interferes in your daily ability to function and has many physical side effects. I have had it for 40 years and it is horrible. I pray that you simply have anxiety and not PTSD.
Last edited by Subzeromambo
hi i agree with the last e-mail i think you are suffering from anxiety..which is more normal than not..i think you should see a therapist and i suggest something for your anxiety and fear..getting your anxiety under control first perhaps through some meds and than working from a good point therapy..i have had both depression/anxiety myself..i think this is a fixable siuation since the source of your fears are known..

I'm not sure why you strongly disagree. I would think that all aspects of what Smn616 should be looked at. It certainly makes sense to look into anxiety being the cause as well as PTSD.

kathy Big Grin
I have seen a couple of posts where you applied ptsd to symptoms more appropriate to a moderate anxiety disorder. The disorders have significant trigger differences and functionality thresholds.
Post traumatic stress disorder is a severe anxiety condition triggered by a traumatic and terrifying event. The event overwhelms the individual's ability to cope and can result in flashbacks, nightmares, hypervigilance, anger, insomnia, and fanatic determination to avoid any similar event stimuli amongst other symptoms. It is very difficult to be diagnosed with PTSD. Patients must have the symptoms for at least 30 days and the patient's symptoms must include debilitating non-functionality in a social or occupational setting.
A moderate anxiety disorder can be triggered by simply having feelings of overwhelming helplessness. Symptoms can be as mild as hypervigilance and nervousness which is very common among a patient population involving chronic illness and repeated surgeries. In most countries, the need for treatment is determined by the patient. No proof of debilitating non-functionality is needed.
Last edited by Subzeromambo
I think that there is much overlap between anxiety disorders and PTSD, and the severity of symptoms and your ability to cope and function play a large part in what the ultimate diagnosis is. From what I've read, PTSD is quite difficult to diagnose, and anxiety disorder is more common. I also believe that one of the main compnents of PTSD is the intrusive and persistent thoughts of the event (reliving over and over again in your mind, nightmares of the ICU for example). Many people here have expressed those things, prticularly if they suffered with a fast and furious case of UC and actually did have their life in peril. Still, the initial treatment is largely the same. The main thing is to recognize there is a problem and seek help when symptoms seem to be interfering in your ability to live your life.

Of course, it is always preferable to have a diagnosis that is less difficult to overcome, but neither one is a simple "take a pill and forget it" sort of thing.


Jan Smiler
I have applied PTSD to symptoms that people have posted about because those symptoms were very much like the symptoms that I experienced and I did have PTSD. I have been told that only those who've fought in a war or have been sexually abused can experience PTSD. I know that is not true. I also think (my opinion only) that PTSD is more prevelent than thought. My opinion comes from people on this site and other sites in which people who've had this surgery have experienced PTSD. And it's not limited to the patient. There have been parents of sick children who crash and burn after all the surgeries are done and their children are on the road to health.

This surgery is a doozy and can, indeed, cause PTSD and because PTSD is often overlooked as a cause I mention it. There are quite a few members here who have had PTSD and since Smn616 mentioned in her post that her symptoms 'feel almost like PTSD' I didn't think those feelings should be dismissed. If one goes to a medical professional and states that s/he thinks s/he's experiencing PTSD the professional can determine what course of action to take.

You're correct - some people experience anxiety. Yet there are others who are experiencing PTSD. As Jan mentioned, there are overlaps.

The symptoms could even be caused by the discontination of Prednisone.

Smn616 - when you say that you're labile for a couple of weeks after surgery, is that a good thing or a bad thing? Because it would seem that the ability to be open to change or adaptable would be a good thing. (Well, unless it's making you feel unstable of course. Roll Eyes)

kathy Big Grin
Jan, Effective treatment approaches for PTSD are not the same as anxiety. Saying they are the same is like saying the treatment for Crohn's is the same as treatment for ibd. There is an overlap of symptoms but effective treatment methods are very different. I am not going to post about this any more. It is simply too upsetting.
Subzeromambo - I'm not exactly sure why this is upsetting to you. I don't think anyone said that PTSD and anxiety disorders would be treated the same. Since Jan is a retired nurse (but still keeping up with the medical world) she is aware of the medications that would be different.

Crohn's disease and IBD also have so overlap and actually CD is an inflammatory bowel disease. Some of the treatments are also the same for both CD and IBD. And sometimes it takes a while to figure out what will work.

For me, I'm just trying to let Smn616 know that it's a possibility that it's PTSD and that she should ask her doctor about it. This comes from my first-hand experience. Since I don't, and haven't had, an anxiety disorder, I can't speak to that. However, you and Rebecca pointed out to her that it sounds like to you that what she's experiencing is anxiety. I would assume that she'd also ask her doctor about that as well.

No one is dismissing your advice or opinion and I'm sorry this too upsetting for you. Perhaps you could tell us why it's upsetting you.

kathy Big Grin
In my uneducated opinion, and after reading this board for 12 years, it seems that for those that suffer mental illness after surgery, about 50% is attributed to depression and 50% due to PTSD. Anxiety can be part of both of those conditions or a stand alone.

Sue Big Grin
Sorry, definitely not my intent to upset anyone. My point was that it is not black and white on these sorts of things and there can be components of different diagnoses at the same time (in both mental health issues, and IBD issues). I was not trying to imply that treatment is the same for cases of anxiety disorder and PTSD, but that typically, they start out by treating the individual symptoms before getting complicated. And, yes, cognitive behavior therapy is used for PTSD and anxiety disorders too, along with other diagnoses.

So, without this becoming a big deal, the point again is to make sure the original poster does not ignore the symptoms, and seek help if the anxiety is interfering with being able to function.

Jan Smiler
Hello, thank you for all your comments and rich discussion. In saying that " it's almost like PTSD, I meant that I have a recurrent fear that this isn't over and keep having nightmares about the future rather than e past. It's more an likely anxiety though.

To contribute to your discussion about PTSD vs. anxiety disorder, PTSD is a subset of an anxiety disorder both can be acute. http://ptsd.about.com/od/ptsdbasics/a/PTSDinDSM5.htm here's a link for more info regarding the definition of PTSD in the new DSM V.

Anyways, I more than likely have some anxiety, but only acutely as I am still functioning pretty well. It's more when I'm alone that my anxiety and thoughts get more intense. I've experienced this with the past 2 surgeries but always had the next surgery to focus on. I think being that is is over I struggling more with thinking it can't really be over and I'm still not okay.

It's comforting knowing that others have had these thoughts processes after takedown as well, so thank you for that.

In response to the labile question, I meant labile as in mood instability. I find myself snapping or crying on the drop of a hat. I was like this on prednisone, but I got off it 8 months ago. I think the lability is more in relation to the stress of everything going on.

I think I'm going to wade this one out for a bit and see if this can blow over. If I'm still struggling in a couple weeks I think I'll find a therapist who can help me get over this fear that I'm still sick and hyper vigilance of checking my body and stool constantly!

Thank you!
I try not to be consumed with my bodily issues. Try that when you are 72 and all your friends seem to talk about is this and that bodily part "falling apart"! Sometimes we just stop and laugh hard at ourselves. And.....it doesn't help when my colorectal surgeon, after over 10 years, asks, "How many b.m.'s do you have a day?" For years I've told him, "I don't count." He won't give up! "About how many?" he wants to know. Can't win!
A quick comment?
As a kid I had a lot of emergency surgeries and long, painful hospitalisations including many in ICU and Isolation...every time that I came home I sunk into undiagnosised depression and suicidal feelings...I wanted back into my 'safe' and 'predictable' world of the sick kids hospital where people took care of me(!!!?)...in those days no one talked about PTSD, anxiety in kids or depression. It took its toll.
Years later when the bad health luck came back the symptoms came back too and manifested themselves with claustrophobia, agoraphobia, insomnia and bulimia etc.
It really doesn't matter what we call it in the long run, the most important fact is to recognise it, face up to it, deal with it and get help if that is what we need.
I never did and although I think that I am past the worst of it I still get flashes of anxiety, fear, cold sweats in 'dangerous' situations etc.
I think that anyone who asks for help is couragous and we should all support and help any way that we can.
Just my humble opinion.
Sharon, I totally agree. While it may be upsetting to have a mental health diagnosis, the name is probably less important than the fact you are aware of the problem and wanting to improve your ability to cope and function. Some doctors will make a diagnosis based on less criteria, some more. Plus, if you are applying for permanent disability, there are further diagnostic hurdles. Still, the bottom line is having a health care provider who listens and directs you to treatment that is effective for you. Unfortunately, there is no treatment that works for everyone with the same diagnosis.

I know I tend to be less sensitive on these things, perhaps because I have not lived them. But that does not mean I don't have empathy. I can't imagine living in my body if my mind was full of fear and anxiety that was out of proportion to the situation.

Jan Smiler

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