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Does anyone here have some kind of post traumatic stress from the medical misery that lead up to (and may include) your pouch surgeries?

It seems that any issue that arises with my pouch sends me into an emotional crisis because i think my life of hospitals is coming back to get me.

I have a fistula, pelvic floor problems, and recurrent pouchitis. Sometimes these things cause me no problems and my life is good. Sometimes i go thru rough patches where all three are bothering me or just one or two. Right now i think i have pouchitis after a trip to India, but its not normal pouchitis, its just more pain and pooping difficulty. I have had so much evaluation and i thought i was getting understanding of it but this case is weird again.

Im back to flagyl and cipro to see if they will help but of course i worry that one day the bleeding will come back and i will have to go on prednisone again and my face will bloat up and ill go back to being prednisone-manic, and then running the gamut through drugs that dont work, and lose my pouch, and my future i worked so hard for.

And i see things exactly like this happening on this forum every day so its not like anyone can comfort me by saying this wont happen. But i feel helpless to stop it if it starts, just like the UC. Knowing it is worsened by negativity and worry doesnt make it any easier to solve.

I should contact my doctor again but instead im just taking leftover antibiotics from the last round because im tired of messaging her. I feel like im annoying her and the staff. They think im good because PT helped but now theres a new problem the PT isnt sure about. My rectum just HURTS. no diarrhea, no cramping, normal frequency. No blood. I felt some stinging 2 days ago that could be a fissure. Im worried this is cuffitis or Crohns brewing.

Im trying to have a future. Im 43. I want my life to start already. I want to know ive solved everything so i can relax. The recurrent nature of these flare/remission diseases are mental torture. I wish there were mental health programs that treat medical PTSD from illnesses that never really go away, the feeling that disaster is always looming is crippling me.

Last edited by GinaPouchtastic
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To be honest, I am not even sure what a medical trauma specialist could do for me either if I think about it. The solution would be for the illness to not come back. If there's always a chance of it coming back, or always a chance of things getting worse, then there will always be worry and fear.

This is one of those miserable truths about medicine. Sometimes the medical side has no answer, and that alone can worsen the psychological side, and there's no amount of mental tricks in the world that can convince you life will be okay if life becomes not okay.

@GinaPouchtastic, I’m not sure what they can do either. I would be willing to give it a try if anyone was available here. It seems like all the counselling and support is for specific diseases or areas, such as cancer or heart problems. Of course those folks need the help, but if you have a less common condition with no patient support organisation then there’s nothing to access.

In the UK they have specialist j-pouch/ileostomy nurses, and they seem to be a good resource.

One thing that helped me in the past was having a good GP. She couldn’t always do anything but she did listen and take me seriously. Unfortunately she retired and since then I haven’t found anyone with even basic competence, let alone a good bedside manner.

I actually went to a Crohns and Colitis support group once when I first got my ostomy. I guess all those other people in the room must have had healthy families and good support systems through their illness journey because I remember saying, "You know what's great about finally doing the surgery? People understanding what I'm doing, people not calling me weak or a baby for having GI symptoms, people not confusing my IBD for IBS and saying Oh it's not that bad or saying I could control it with diet or mind-over-matter." And everyone in the room stared at me blankly like they'd never heard of anyone doing or saying such things. I never felt so alone in that moment.

It was that day that I learned that not everybody tries to cure their IBD with natural medicine only to get sucked into crazier and crazier ideologies with increasingly abusive and toxic people until you have a complete meltdown and decide to have surgery because you think it will kill you and you don't care anymore because you want to die anyway...and then the surgery accidentally gives you a better life and you're like ... oh. And then you spend 10 more years in therapy because you realized that you were wrong about everything you believed your entire life and had to build a new worldview and life completely from scratch...

So that doesn't happen to everyone apparently. My bad.

It took me at least 5 therapists and 3 psychiatrists before I found mental health providers that even took the time to understand my complicated story. And my psychiatrist actually just died, too. So hopefully the next one is good. I miss him. He was one of a kind.

Last edited by GinaPouchtastic

@GinaPouchtastic, I have a condition similar to POTS, which you may have heard of. I used to spend some time helping people in a support forum online, and so many people there had stories similar to yours.

I'm sorry to hear your psychiatrist passed away. My good GP didn't pass away, but I've shed a few tears since losing her to retirement. She wasn't perfect, but she had an anchoring quality in my life. I didn't realise how much of a difference it made until it was gone.

I'd love to meet more people who have had the experience of realizing everything you believed was wrong and that most people you knew before your current existence were actually toxic and had to build a whole new worldview and life from scratch. I feel like people who go through this tend to stay silent because its so much to explain to even find out if someone else shares the experience. I think that is almost harder to manage than the GI stuff sometimes because it destabilizes what you think is real and true about yourself and life. I had to start reading serious heavy academic philosophy of science to finally get more of a handle on how to discern what's "true" and what isn't.

Gina, I feel for you. Can you ask your doctor — or ask your surgeon who did your surgery — for the name of a “peer patient”.  This will be someone in their files who have been through the same surgery as you, whether recently or years ago, and they are willing to talk with you and act as your leader / mentor. He or she (you can specify) will have come through this already and can lead you through it. They can answer your questions not as a professional trauma counsellor or therapist, but simply as a peer. It might be one chat or many chats. They might be willing to meet you in person, or better yet talk with you regularly on the phone and never need to meet face to face. Just make sure the referral name and phone number comes from your doctor’s office. I had a peer patient before I had my first surgery for ulcerative colitis related cancer. Our talks helped me overcome my intense fear and all my questions were answered.

This was seven years ago and I haven’t needed it since. I don’t know why more doctors don’t suggest peer patients to new and upcoming patients. It can work. It’s like any help group except you are 1x1 talking with someone who has already experienced it and can lend you a hand and advice, and an ear to listen. Don't think that you are bothering the staff in your doctor’s office. If they sound bothered, maybe they are having a day, and it’s nothing to do with your call or text at all. Even if they are bothered, I say tough: it’s their JOB as medical personnel. Sometimes frazzled people need to be reminded in the politest way possible.  So ask for a referral to a peer patient. Try it. The doctor’s office might have to contact the patient and ask for consent before they can provide you a number, but keep trying. I wish you well.

Some great advice

It certainly is traumatic to go through what we go through.

I went through four surgeries  ... I Avoid going to a hospital like the plaque.

I don't have any advice.

I try and and don't think about it at all. 

I dread of the time comes I have to have work done

That. Is what bothers me.

I went through ptsd for a long time after. But somehow I was able to move on. I don't know how.

I just knock on wood this thing I have now keeps working well and I have no problems. Not likely. It's not how it goes for me. But I've been in once since my 4th and final surgery.  And they made me feel like I was an addict seeking drugs. I wasn't of course.  Pain is what drove me to go. And I was there two days. And the whole time they made me feel that way.

I don't want to go back.

I kinda understand your feelings.  This is not easy to go through.

I wish you the best and hope you can use some of the advice mentioned above.

As you know. Here is where we understand.

So speak out here. We can at least all talk about it.

Doing that alone helps to an extent.

Richard.

Yes, I almost died in 2000 when I had my surgery and immediately had adhesion and got stuck in hospital for couple of months before they would do the take-down surgery.

I know I have PTSD from it....

Right now, I'm having upper GI issues and I'm afraid of Crohns...

I'm hoping it's a bad case of IBS.

you are not alone, if you need someone to chat sometime, message me.

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