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My Ileostomy And My Anxiety

Posted by lifelessangel12

I've had my ileostomy for a week and I've been having terrible anxiety I'm not sure how to deal, it's all so new to me, i could really use some advice 

See all blogs by lifelessangel12
Sep 18, 2021 11:59 PM
w30bob : Hi lifeless,

Welcome to the party! It's always a bit overwhelming in the beginning, but like other traumas.....you get used to it and eventually deal with it just fine. Post whatever questions you want........the gang will chime in. Being just a week in you must have a LOT of questions. I'd suggest using the search, but that never works well for me, so I'll skip that. I'm guessing your home from the hospital by now......they try to get patients out ASAP. Do you have access to a good ostomy nurse? I'm not 100% sure everyone looks at the blogs......I know I focus mainly on the forum. But if your question is new it should show up in the notifications regardless if whether it's a forum post or a blog post. Fire when ready!!

Sep 19, 2021 12:23 AM
Riva : Education is key on this new journey of yours. I suggest you check out UOAA, United Ostomy Association of America. It's our National organization. There you will learn about foods, blockages skin care, clothing , products, travel, activities , and a whole host of other tricks of the trade. You might also want to check out a local support group near you . Just remember a pouch does not define whom you are and that you are not alone on this new journey of yours. Best of luck
Sep 19, 2021 3:34 AM
patrickrichardson1946 : hi, i have a colonostomy but i think whatever the stoma it is a lot to take in at first. there is a lot of info on this site and you will find people on here more than willing to help you address particular problems . you are not on your own. patrick

Sep 19, 2021 3:41 AM
Bill : Hello lifelessangel12.
The way you have worded your post seems to indicate that it is the anxiety that you are not sure how to deal with, rather than the stoma.
However within my reply, I hope to cover both aspects superficially (others will hopefully chip in with more detail. as I don't have an ileostomy).
A week past surgery (& up to six months or more) and your metabolism, emotions, and thinking will still be in a state of turmoil and trauma. Anxiety, to some degree is 'normal' and to be expected.
The fact that you had a stoma' as a result of surgery is somewhat incidental when it comes to the 'traumatic' side of things, as almost all types of serious physical injuries can result in symptoms of Post Traumatic Shock (PTS) which, if not dealt with, can lead to Post Traumatic Shock Disorder (PTSD).
PTSD has been much researched and written about because it particularly affected participants in the Vietnam war. However, the researchers have subsequently found that the condition is much more widespread than just wartime experiences. There tends to be a pattern to the condition and a discernible pattern to its' management. I will not go into great detail about what you can do for yourself at this time as i am sure that you can get better advice via the WWW on this issue.
Being in The UK I would usually recommend starting with the advice from the NHS : Treatment - Post-traumatic stress disorder - NHS (www.nhs.uk) but there are many equally informative sites out there to peruse.
To save you looking it up, I have copied the first few paragraphs on the above site for your information:
“The main treatments for post-traumatic stress disorder (PTSD) are psychological therapies and medicine.
Traumatic events can be very difficult to come to terms with, but confronting your feelings and seeking professional help is often the only way of effectively treating PTSD.
It's possible for PTSD to be successfully treated many years after the traumatic event or events occurred, which means it's never too late to seek help.
Before having treatment for PTSD, a detailed assessment of your symptoms will be carried out to ensure treatment is tailored to your individual needs. This may be carried out by a GP or specialist.
You can see a GP to start on this process, or you can refer yourself for assessment to a psychological therapy service. You're likely to be offered treatment if you've had symptoms of PTSD for more than 4 weeks or your symptoms are severe.
There are a number of mental health specialists you may see if you have PTSD, such as a psychological therapist, psychologist, community psychiatric nurse or psychiatrist.
Active monitoring
If you have mild symptoms of PTSD, or you've had symptoms for less than 4 weeks, an approach called active monitoring may be recommended.
Active monitoring involves carefully monitoring your symptoms to see whether they improve or get worse.
It's sometimes recommended because 2 in every 3 people who develop problems after a traumatic experience get better within a few weeks without treatment.
If active monitoring is recommended, you should have a follow-up appointment within 1 month.”

As it has been pointed out, many people get ‘better' without professional intervention, so the condition needs monitoring. It is also one of those conditions that respond better if interventions come earlier, rather than later. That said, ‘interventions' can be ‘Self-Organised' if the person is aware of the symptoms and how to manage them.
Like many things in life, ‘knowledge is power' (or at least the key) – so it will be a sensible approach to find out as much as you can about Post Traumatic Stress, which will give you a fighting chance to stay in control of it.
As for the stoma, well, that is also a ‘normal' thing to be concerned about when you first have one, and we have all been there.
I have found this site to be a useful place to discuss our concerns, fears and experiences in this regard and I hope that you will quickly adjust to the ‘new you'. Hopefully, these anxieties will quickly be calmed and you can get back to a ‘new -normal' soon.

Best wishes
Sep 19, 2021 6:20 PM
Earth Angel : First of all- you should change your profile name to Beautiful Angel ????????- it may not seem like things are going your way now but just hang on and you will get there! What you have been through is quite traumatic and most people will have no idea what you're dealing with and how you feel.
When I first got my ostomy, I couldn't even look at it without feeling sick to my stomach. The home care nurse changed my appliance for me at the beginning and eventually encouraged me to do a little bit of the change myself and I gradually did more until I was doing it all on my own. It was frightening to me ( and I'm a nurse!) All I can say is take one step/ day at a time and before you know it you will be able to change your ostomy with your eyes closed!
As far as your body image- it will take time to accept your new body. Allow yourself to feel sad at times but don't dwell on those feelings too long. You are much more than your ostomy!!!! This is a good time to start practicing gratitude- think of three things each morning that you are grateful for. It can really help turn your attitude around to a more positive one.
This is a wonderful site for support. We have many amazing friends on here who care and understand. They can be a great source of information and support. You are young so I would suggest finding some other people your age with the same condition ( this site is a good start) to talk with. It helps to feel as if you're not alone- which you're not- we are all here for you!
Hang in there and please reach out with any questions or just to vent! There are so many of us that want to help!

Earth Angel ????
Sep 24, 2021 11:02 AM
banshie3by5 : Welcome to the group. Sorry you're having a rough time. Everyone above has great advice. Here's a couple things you may not know yet. The benefits of an ostomy pouch:
1. You can control where you fart. By this I mean that while you may pass gas in isle 2 of your favorite store, you don't have to burp your bag until you're in the privacy of your car.
2. You can poop standing up! And without getting half naked! This comes in very handy when hiking. You simply step into the bushes, drain your bag, put the paper towel in a zip lock baggy, tada.
3. You can poop literally anywhere. On a kayak? Driving around and have to go? No problem. Pull over,(lower your seat in a car), drain your bag into a zip lock. Get back to what you were doing. This is great when camping during a storm. Everyone else has to make a run for the cold outhouse in the dark & rainy night.
4. Food becomes your medicine. If I have too much diarrhea, I get pectin gummy candy (brach's cinnamon bears!) Or marshmallow filled rice crispy treats. A little plugged up? Then I only need to eat cheap chocolate like 4+ Oreo cookies or anything Hershey. What works for you will probably be different because we're all individuals.
5. You now have a doctor's note to not eat that hateful thing that you never really liked but now literally makes you sick. Dark meat & sausage and cucumber no longer guilt you with thoughts of wasted food.
I hope you got a giggle. Feel free to laugh until you cry. It helps.
Sep 24, 2021 12:37 PM
w30bob : Bansie.......that's awesome! There are a few "upsides" as you mentioned.....if you want to call them that. As you said....I am now the world's fastest pooper!! The guys in the Men's Room watch me go into a stall, and come out 15 seconds later....amazed and confused at what I just did. The don't hear me pee or drop my drawers, so I just look at them and wink. And yes, you can poop almost everywhere. Which I guess is good, but I'm glad everyone doesn't do that. I always wonder what I would tell someone if I got caught dumping my bag in the woods or on the side of a desolate road. I carry two of those plastic urinals in my car, so if I get stuck in traffic.....or can't pull over......they are life savers. Especially for me, as I'm short gutted and can fill my bag in minutes, depending on what I ate/drank and how much.

The other thing you didn't mention is you now have an excuse not to wear your seatbelt if you get pulled over for it. Don't ask how I know. Not that you shouldn't be wearing your seatbelt...you should, we've all been in hurries and forget....but mine passes directly over my stoma and blocks output from getting into my bag. Which creates a very big mess if my barrier seal is burst. Every cop who's pulled me over for not wearing a seatbelt....and it takes all my fingers to count that high.....always said in that sort of gleeful way "Sir, I'm pulling you over for not wearing your seatbelt". And I'd just say "I understand officer, but I think the judge will except my reason for not wearing one".....then I lift my shirt and show him my frontbutt.....and there's always a slight gasp, then they lean back and start apologizing.....and tell me to have a nice day. I know they're saying to themselves....poor bastard....glad I'm not him. Had I known this when I was younger I would have always stuck on an ostomy bag when I felt like driving wild and crazy.......which was often. Who knew???

Banshie.....thanks for the giggle.......cuz I did!!

Sep 27, 2021 10:49 PM
banshie3by5 : ???????????? it's definitely all in the perspective. On a long drive home, 3 young kids asleep in the back, I pulled off a remote exit, ducked down by the rear passenger tire. Did my thing, stood back up while adjusting my waistband. The passing truck had quite the look of "wth?" on his face. ????
As for seatbelts, I was ocd about them since childhood. They're always across the thigh/lower pelvis. Thankfully not an issue for my wafer & bag.
Jan 15, 2022 1:19 PM
tobeydelaney : just be your self & learn notbtomlet bthis change your life.I get alot of help bybworking with an ostomy nurse .Also I am very up front babout having a ostomy.Dont worry abou what other people think.Hope this helps you
Jan 22, 2022 12:29 AM
Xlshrimp : The early days are challenging, getting the skin dry and clean quickly when changing was an art but helps wear time; i usually get 4-5 day. If i have a hot tub, long hot showers, long swim, excessive exersion i could go through two in a day. I wear the hollister with the belt and it helps a lot, i couldnt go without a belt.
Best advice i ever received was to wear two clips one holister and a smaller convatec one underneath. Thats saved me a lot of messes. Im private about my medical history as it is only my business and if the rednecks i work with learned of it We would probably part ways. You may hear people talk about our appliances ignorantly but mine saved my life and for this im forever grateful so i smile and wave. Smile and wave????????these associations are important for getting our questions answered and joking about the rest. The UOA is a great source and i attended an international meet up event once and it was terrific i mean really fantastic experience. I hope we all get to attend one someday, i hope your feeling better about the new accessory and life is good. ?