Hi everyone,
I have spoken to many of you and appreciate all of your advice in the past. I'm putting myself out there right now, and feel rather weak for the way I'm feeling.
My daughter has had step 2 and is doing very well. I should be so happy and excited that she's had a return to health. I am happy for her. She's finally getting back to her old self again after a very, very long road of recovery. She's eating again, gaining some weight back, hanging out with friends...so why am I so sad? I find myself worried to death that this won't last...scared of what life would be like for her if her jpouch fails. It's been such a long road of complications, worry and fear (3 small bowel obstructions-5 hospital stays-I stayed with her). I feel like I'm in a funk that I can't get out of. Have any other parents out there gone through any similar feelings? We are in counseling as a family because of all of this. I have an appointment next week, but was wondering if this is a phase that others have worked through. Sorry for the long post...just looking for words of encouragement from those who've walked through this fire too.
Thanks ~ Elise

Hi Elise,
I'm a j-poucher who went through HELL between my 1st step and takedown. I got horribly depressed myself, as did a friend who has just gone through the same stuff. She's got to keep her temp ileo for longer than I had to as she wants to have a baby and here, they say to have the TD after you've had the kids you want to have. Anyway, my friend and I talked about feeling like we had post-traumatic stress disorder because of the horrors of being operated in the hospital we both were at. To me, it seems pretty normal that you feel this anxiety and depression after watching your child going through such a hard time. Parents and spouses go through the wringer, too. If you have signs of PTSD, I don't think it's surprising. My husband's sleep patterns have been very disturbed by what I've gone through the past 10 months. When I get up at night to go to the loo, he still thinks he can hear the "old noises" (me crying, throwing up, moaning on the floor etc.) even though I'm silent and just going for an innocent trip to the loo! Getting professional help like you're doing is a good idea. You've been through your own trauma and need help healing. I hope you get good help!

Well considering you haven't been breathing since your daughter started going through all this and you finally got to inhale, it's not at all unexpected. As Soph said it sounds like classic PTSD symptoms. Many here (both the colonless and the colonless watchers) have gone on antidepressants for it. It's not a weakness at all. Waiting for the other shoe to drop is something we've heard here a lot.

I had an automobile accident and broke my hand. I was taking pain killers and when the pain killer taking stopped I stopped this horrid downhill spiral. I thought it was just going off the pain killers. I guess all the stuff I'd been through (surgeries, horrid work environment, daughter's cancer surgery and the final camel back-breaking straw - the accident) just caught up to me. I finally went on Zoloft and within two days I was a totally different human being. It usually doesn't work this quickly but I'm sure glad it did.

It's an inbalance and the medication helps to rebalance. Going to counseling is really helpful. If you're not seeing a therapist who can prescribe meds, maybe give your doctor a call. Please don't think of taking a pill as a weakness. It's no more a weakness than taking a daily vitamin or heart medication.

Another thing that might be happening is 'separation anxiety' maybe. You've spent quite a bit of time with your daughter and gone through a lot. Now that she's being a normal person again, giving up that control of being with her might be hard to do.

Good luck with your appointment and let us know how things are going.

kathy

Soph and Kathy,
Thanks for taking the time to write! I am having good days and bad days and it was a really bad day when I wrote that. I guess I'm just finding it hard to put all of my energy into believing that she's ok. Right now, I teeter between hoping and fear that it won't last. I guess each new day brings more hope. She just picked up and left on a weekend trip and I'm so thrilled that she felt well enough to do that and the couragae to go! Of course, I worried about her a little bit, but I tried to just be happy for her. I'm looking forward to talking this through at my appt. I appreciate your encouragement!

Although Kathy and Soph are trying to help, I just would not get the idea of PTSD into your mind. PTSD generally does not manifest after something like this. There are two types, simple and complex. Simple is after one huge trauma, such as a near-death experience, and complex is characterized by repeated exposure to trauma, such as being sexually abused for years. I have been diagnosed with simple PTSD from a kidnapping that occurred in my childhood, and the medicines I have been put on are heavy duty. I have chosen to deal with my PTSD without medications, because they have serious side effects, such as tardive dyskensia, fatal neuroleptic syndrome, etc. What you're going through may have all the symptoms of PTSD, but you're missing the crucial trauma. It sounds to me like you truly just have a horrible case of depression, which needs to be treated with medication and lifestyle changes immediately. Either way, I hope everything goes alright, and you're taking a huge step in the right direction with the counseling

And Soph and Kathy, I don't mean to offend you or put down your views, its just that PTSD is a HUGE anxiety disorder, and it shouldn't be taken lightly. Sorry if I was harsh

I don't think either Soph or I were taking this lightly. There have been several people on this site who were not the patient and ended up with PTSD after their spouse, relative, child had finally returned to health. I have PTSD and I don't think it was from just one incident.

I know many people on this site have tremendous empathy. But I don't think anyone can understand what it's like to have one's child go through trauma unless one has a child. It's a whole different ballgame. I don't think one has to literally experience the trauma in order to internalize the trauma. When a child is very sick, a parent usually steps right up to the plate and does what is necessary to help her or his child. While going through this a parent often does not deal with his or her own issues. It's called post traumatic stress disorder.\

BTW - I take medication for PTSD and it's been a huge help. I think each person has to decide for herself whether or not to use medications. Therapy and alternate methods of medicine are often very successful - but not always. I'm just cautious about warning people off medications when medications may be what is called for. We've had people on the site who refuse to take medication because they think it's a weakness or they don't ever want to take medications again or they're afraid of side-effects. And they continue to suffer when they don't have to.

Whether it's PTSD or depression, it should be addressed.

kathy

Hi Chelsea and Kathy,
Thanks for taking the time to respond. Chelsea, I appreciate what you have to say and what you've gone through from reading some of your posts. What you've lived through, and what you are dealing with currently certainly give you a background from which you could speak of PTSD.

That said, I don't know enough about PTSD to talk about that, but I do know that what we've been through has been traumatizing. The sheer shock of UC out of the blue, the rapid onset of the destruction of her colon, the hours and hours of latenight internet research, launching into every diet immaginable to "cure" this for her, the helplessness that follows that, the medication regimines that failed, one after the other, natural remedies that failed, the hospital stays, the blood transfusions, having to abandon one of my children to the care of others so that I could put her on an emergency flight to seek quality care, watching my daughter waste away to a nearly anorexic state, collapsing from loss of blood-nearly bleeding to death, the smell of warm blood in a hospital bed pan, the small bowel obstructions, the ng tube placements that I couldn't watch, the vomiting, sleeping on the floor beside her because she didn't have the strength to get out of bed, the open wounds, the loss of dignity when I'd have to help her shower-(she's 20), changing her ostomy bags because she was fighting nauseousness, the constant worry about is it Crohn's?, will she develop a fistula, fissure, adhesion, small bowel obstruction, prolapse pouch, pouchitis, .... ok, you get the picture! Sorry about all of that, but I felt the need to spell out the journey that led me to the original post. I was certainly at one of my lowest points.

I think the people who participate in these forums do so seeking information, compassion, and support in very dark and difficult times and we cannot define another's experiences without first walking in their shoes and everyone's experiences with this horrible disease is different. People have died from this, people do committ suicide from having to live with this disease or the aftermath of surgery if all does not go well, so we cannot, in responding to another's posts here, take their situation lightly without really knowing what they are going through. "...a long strange trip it's been" for sure!

According to the National Center for Posttraumatic Stress Disorder, Posttraumatic Stress Disorder (PTSD) is an anxiety disorder that can occur following the experience or witnessing of a traumatic event. A traumatic event is a life-threatening event such as military combat, natural disasters, terrorist incidents, serious accidents, or physical or sexual assault in adult or childhood. I've had to dig deep and seek outside help in order to get to a point that I'm functional again.

Kathy, thank you for the compassion and support that you've shown to me here and with my past posts. I do think that Chelsea is right in that I was in a very "horrible case of depression," and still struggle with it on a daily basis...whether or not it's PTSD remains to be seen. I choose not to take medication, but do participate in therapy with a licensed therapist which helps tremendously! But, what's really helping is TIME. Each day brings another healthy day for my daughter and that, more than anything, is giving me time to unwind from all of the stress we've been under.

Thanks for taking the time to read this and best of heatlth to you!
~Elise

Hi Elise, Kathy and Chelsea,
I don't think it's easy to know if a terrible depression is just that or PTSD. I thought I was strong having survived my father's battle against Necrotising Fasciitis and MRSA which sent him from alive and well one day to dying the next. Literally. In the space of 24 hours he ended up in isolation in the ITU, amputated at the hip on one side and in a drug-induced coma that lasted 4 months. Another 4 months passed before he was transferred from the ITU to a normal ward. All that time, we had to sleep with our phones by the bed as we were told he could die at any time. We flew back on forth between Norway and England, saying goodbye "for the last time" each time we left. We also had to fight his sister who told the hospital in England (my Mum, brother and I were in Norway where we all live) that my parents were divorced and he was estranged from us all. I think the motive was financial - my Dad is wealthy - but it put us through hell as we were treated like scum. It wasn't till I threatened legal action against both my aunt and the hospital and my parents' lawyer contacted the leading consultant and confirmed that we were my father's genuine next of kin, that we were finally told what was happening and were allowed to see him. It was a hideous experience that I'm still reeling from. My UC was crazy during this time and just escalated to the point that, having had to look after my mother who had a complete breakdown during my Dad's dramas, I collapsed too and ended up being operated. Sorry for the long ramble, but my point is, whether or not it's PTSD, traumatic experiences like the ones we've been through can really mess you up. I never did talk to a psych nurse like everyone kept telling me I should, nor did I take antidepressants (I'm terrified of addiction because we have alcoholism on both sides of our family and I know the addictive personality type is there...) but I say you just do what you need to in order to get good quality of life. The dark times can be REALLY dark.
Don't worry Chelsea, I didn't take your posting as a personal attack or anything . We're all just trying to help each other. We may not always agree on everything; what matters to me is that we have the same good intentions, and that's why I appreciate all the support on this site - yours included .

This message has been edited. Last edited by: Soph,

Elise:
Just a note to say we hope that you can get through this somehow. My husband, Paul, has been through the ringer, as so many on this site have. During the traumatic horrors he faced, hospitalizations, surgeries, meds, etc., I was strong and confident, holding it all together for him and the kids. He had to go to an end ileostomy just recently and is doing so much better.
However, after it was all said and "done" I was reeling from it all, and had to go on Wellbutrin for the almost debilitating anxiety I was experiencing. It's like constantly looking around the corner to see what's going to happen next, waiting for the bomb to drop again. But he's doing so well. I mean, awesome, really. Happy, healthy, gaining weight, working... Life is good. BUT I was petrified and shaky, not sleeping, crying...I felt terrible, almost guilty. Like this didn't really happen to ME, it happened to Paul. But when you love someone so much, be it a spouse, or especially a child, to go through it with them, you can't leave unscathed.
The Wellbutrin has helped tremendously. I totally agree with Kathy and Soph-- there's nothing wrong with a pill to help your symptoms and get you through this. Although there seems to be a stigma surrounding antidepressants/anti-anxiety medications, I have been helped tremendously by it.
We wish you the best; I don't really have words of wisdom. Just want you to know it's okay to feel the way you do. We care.
Betsy

Wow Soph...pretty horrible stuff to have to work through and try to deal with your illness too. I'm with you on the medications though, I just prefer not to put foreign substances into my body and try the natural approach first. I'm trying to stay busy and catch up with things that have been put off around the house during the course of flying to and from Boston for her care (the list is long I'm trying to get back to my exercise routine and trying not to worry so much about my daughter, like I said, each "normal" day for her is the best medicine for my worried mind.

This site can be a blessing, but it can also add fuel to the fire when you know what can/does go wrong for people. It's all a journey and the support from people like yourself helps alot. Thank you!

Betsy, you really described me pretty well. It's hard to decompress after such an ordeal. As a parent, I'd have done anything to take this from her and let the suffering have happened to me. It still breaks my heart that she's had to go through this. I am so grateful that a surgery like this even exists and for the skilled hands that have given her the opportunity to live a relatively normal life. It's just the "what ifs" that sneak up and nag at me.
I had a wise friend tell me that instead of thinking about the what if's, that I should focus on the what IS. She IS doing fantastic, she is eating well again, happy, hanging out with friends, scheduled to return to school and get back to living life to the fullest. So, we have much to be thankful for! I've made up my mind to stop focusing on the negative what if's and rejoice in the positives!

That's such a good motto: don't think "what if", think "what is". I'll remember that!
I also like that motto that someone has on their user ID (can't remember who at the moment!) : Life's uncertain; eat dessert first. (May have slightly misquoted, but I'm sure you recognise it.)

I absolutely think it is possible for those who are supporting a person with a serious illness to experience PTSD.
Getting into a pattern of illness, being there constantly,seeing a child in danger, regardless of the situation, must cause a lot of pain and anxiety. Parents are guardians, meant to protect their children and to feel helpless must be extremely difficult.
I know how scared UC made me. Something I couldn't control. I can only imagine how scared my family was through out the years- seeing me lifeless, so lethargic, losing so much blood, having huge cysts on my legs, etc.
I think there is an adjustment period that occurs. But time heals. It's natural to be wary-are things to good to be true?
Please try to focus on the good things. Maybe plan a shopping trip or go out to dinner, celebrate the new life your daughter has.
God bless you and your daughter (I am so glad she is doing well!)

Elise, I am glad to hear you are going to focus on the positive! It does sound like your daughter is doing well but sometimes you can't just help but worry. I had a fast and furious case of UC in July of 04 that resulted in the emergency colectomy (toxic megacolon) and I was deadly sick. Less than 3 months after that my husband had a quadruple bypass (and at the time I was 35 and he was 39 and we have two girls who then were ages 3 and 6). I can honestly say it was worst watching my husband go through his ordeal than mine was and I can't even imagine what it would be like if it was my child. I was a complete mess with his situation (much stronger for my own). The doctor put me on zoloft and like Cathy it did wonders for me in just a few days. I am not pushing medication at all but sometimes it really is a lifesaver. Also I just recently switched to cymbalta recently because I felt I needed a change (Recently experience some other medical issues that were making me anxious again) and again with good results. Sometimes meds don't work the same way forever. It is important to note I was someone who always tried to combat anxiousness and depression with exercise and did not want to ever succumb to antidepressants but it saved my life. At the time before this I was such a mess, I had no focus at all, I was a nervous wreck, I was literally worrying about worrying. I still worry but now I do it with some focus. I hope this helps a little and sometimes it is so nice to know you are not alone.

Everyone here is always so supportive and understands. I think it is great advice your friend gave you but some days it may be tougher than others to follow and that's ok too.

Also I find exercise helps tremendously too I know in my case it has been difficult being consistent in that area but I know when I am I do feel so much better.

Thanks. Kim

Elise,

when I read your first post on this subject I thought I was reading something I had written myself! My son got his j Pouch 10 years ago. I had been ok for a long time but he recently lost his j pouch and has an ostomy. I have been able to have a few good days and then out of nowhere it hits me like a mac truck again. I don't know if his ostomy is permanent at this point, but he is gaining weight and feeling better. He had gotten down to 74lbs. He is 13 and about 5'6" right now. It is impossible for me to talk about it or type about it without crying. I wo'nt generally talk about it to anyone in person only on the phone. I have 2 other children so I gotta try to keep my chin up.