Dealing with Anxiety after Ostomy Surgery

Dec 30, 2014 7:08 pm

Hi all - not sure if this falls in this category but I finally worked up the nerve to post my question! I have had my ileostomy for over 26 years. I am 46 - been married for 23 years and have a great 18-year-old daughter.

I was 7 when diagnosed with ulcerative colitis. Like most of you, life stunk and school and running to the bathroom was awful. Especially when I did not make it in time. Many awful embarrassing moments. Finally, I had to be homeschooled. Then the disease got so bad that I almost died 2 and we went for the ostomy. I wish I had done that years prior!!

Sorry to ramble on... My question now is after this long, I am now (past 18 years) mentally dealing with anxiety! My pregnancy was awful. I was in the hospital over 30 times - high blood pressure + a few other fun things!! It is like a counselor said to me that I went from my growing up years of illness and pills and hospital stays to literally health after my ostomy to a bad pregnancy that flipped me back mentally. I have tried medicine - acupuncture. I do great in my work of teaching and going to my daughter's events, but I live with the "what if" fear. It is really weighing on my marriage as I prefer to stay home in case - I maybe get a blockage or anything. I fully get how weird this is. My surgeon and ostomy nurse say that they have seen this a few times and it is really like a post-traumatic situation where I never probably dealt with the crap of my younger years - then within a few weeks, my life changed for the best with my surgery.

So I guess have any of you dealt with something or am I just a spaz?? I really would like some advice not someone telling me to just get over it. I have done that myself along with a ton of praying. Thank in advance for any info or help. I have seen 4 therapists/counselors and I see it but it's like my brain won't let me just push through. I put roadblocks up like I was sick when now I am healthy.

Thanks! Happy New Year

Past Member
Dec 30, 2014 9:33 pm


There is definitely a huge age gap between us, but you will be surprised how some of your situations are common to mine. Obviously not the pregnancy and

I was diagnosed with UC since I was 2, that's what I've been told and what the medical reports state. Gonna turn 25 in February. So that's like 23 years of UC. The surgery had not fixed everything, and I'm still dealing with UC manifestations outside the colon and the long-run side effects of treatments.

Yes, I've been home-taught as well and haven't gone to school regularly until I turned 14 or 15! Since then, the education experience was just a mess and I hated every single memory of it. Not just because of illness. But, I made it to the honors university degree. It was 10 times harder for me and I had to turn around too many situations and deal with situations that are way beyond my age at that time. I had to deal with those situations on my own, even some medical situations, as I was not very close to family since I turned 16. Some of those situations still stuck in my head. Thus, the current anxiety triggered all those situations and even revealed some shocking situations that I have completely forgotten.

I know it's kind of weird to take advice or listen to someone who is probably close to your daughter's age, but we deal with something – believe it or not - off the norm. Since you are 45 now, there is no point remembering any of those situations or digging after it. What's done is done and you are now far beyond those moments. Having said that, I will share with you why I recommend that. What happened to me is, I kept remembering those childhood and education experience situations till I had flashbacks of shocking situations that I have completely forgotten when I was at a very young age. After investigation, it was true flashbacks and not delusion. I was better off not remembering those situations again because they are just horrible and could drive anyone who experienced them into a mad person. Can't even share them easily.

No one told me ignorance is bliss, or probably I've been told that but never paid attention to it - can't remember. I had to learn that in the ugliest way. I probably had anxiety for most of my life which was left untreated, this did put me in the dark hole of substance abuse and mad thoughts once I got older in age. Now I only focus on anxiety treatments rather than ending up in a cage.

The "what if" question could lead to creativity as well as destruction. I did overthink "what if" questions till all my fears came true in front of my eyes, and I didn't have a solution for it, because I only thought of it from the fear side and not how to avoid it or how I would fix it. It would have been much better if I had said to myself, if this happens I should do this and not overthink it. "The devil is in the detail".

Having those thoughts about "I should have had the surgery 10 or 20 years ago" is kind of a tricky one. I should have had the surgery when I was 7 and only had it last year in November 2013 – 17 years later! Just after my graduation. So, I will try to balance things for you here...

If you had the surgery let's say 15-20 years ago, you would think I would have been much better, at least I would have avoided all those accidents, hospitalization, endo-oscopies, embarrassments, anxiety, side effects, etc. when you were younger. But hold up, the ostomy supplies are now 10 times better than before. Also, you probably wouldn't have handled the surgery shock when you were younger, or ended up so anxious that you couldn't even be confident marrying who you loved now.

For myself, I would not have had the guts to continue education and become a survivor if I had the surgery when I was 7-10 years old. I know I wouldn't have handled it and would have ended up somewhere else. On the other hand, the disease - UC - had several manifestations in my body from head to toe as well as long-term medication side effects.

I kept thinking this over and over, cycles in cycles, till I ended up with a blown head, confusion, racing thoughts, and even so close to jumping in a deep lake. I don't dare to just tell you to get over it because I hated everyone who told me that. On the other hand, realistically, you can't time travel. Respect how you got over it before with prayers. I've been there and wouldn't be alive today if I had given that up. It is the only thing that didn't let me go with ending up my own life.

Wish I had delivered my point here and hope this makes you think brighter. From the marriage and pregnancy questions, there are too many awesome ladies on this website who have tons of life experience and dealt with all kinds of situations. If you think this reply has helped you where I'm only 24, imagine how much assistance you can get from someone who's 50+!! They can provide you with unlimited help. Give it a try and you will be surprised. People who are willing to help, with nothing in return, usually come across those who require it. You will also feel comfortable talking about your situations to them. I tried that myself and discussed very complicated issues with them while I couldn't even do that with my own family.

Sorry for being long. Allow typo errors and grammar :D:D

Happy new year to you

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Dec 31, 2014 3:13 am

Ah, anxiety. It rears its cute little head at the most unlikely moments. I have had anxiety for so long I can't remember when it started. It had nothing to do with this stoma stuff. Don't you just hate it when you are all snuggled in bed and so tired you can't think and you are drifting off in a wonderful state and all of a sudden it HITS! DAMN! And you tell yourself, oh it's just that stupid anxiety again, but you can't go to sleep even if someone hit you on the head with a hammer. There is nothing wrong with you that isn't wrong with 243584752487 people in this universe. You've just had to deal with a lot more in your life. If you aren't already on some pretty decent anxiety medicine that is out here (which if you aren't you should ask your doc about); there is really only one thing you can do. Keep telling yourself it's just this stupid chemical imbalance in my body and I need to shove through it. Say you are afraid of spiders, for instance. Instead of running from them every time you see one, you get your shoe and smash it! Pretty much all you can do with anxiety, smash it with your mind at the time it surfaces or ride it out. But keep telling yourself it's just anxiety, there is nothing wrong with your thought processes. I know, you are probably saying, she's just telling me to get over it. But I'm not. I'm telling you to fight it. Punch it in the guts! If you're scared to go out because you're worried about accidents. Put some armor on. Like I do. Grandma underpants that cover the whole damn appliance and stretchy pants with a big top that covers. The stretchy pants are to hold it in place in case. That's only IF there is some place you really have to go. If you don't have to go anywhere, then stay secluded in your comfy home and try not to worry about it. In spite of all else, it sounds like you've had a pretty good life. You're doing great, JQ. Don't beat yourself up over this little demon that wants to invade your mind. You should know by now if you are going to have a bad day with the bag or if it's going to be pretty mild. If you want to stay in because you've already been to the bathroom 5 times in an hour to empty, it really has nothing to do with anxiety, it's just common sense. (And what's with all these backslashes wherever I need to use an apostrophe?) You are not going bonkers.

P.S. Darious, just because you're younger doesn't mean you are not intelligent or have anything pertinent to offer. You do a great job here and in your own life! HUGS

Jan 02, 2015 12:00 am

Thank you so much!! You made me laugh. Yes, I have much to be thankful and happy about, and I tell myself that daily. I know anxiety is just a part of me, and I need to take control of the darn stuff. Meds just always made me feel worse. Probably all the years I had to be on meds, now my body is saying "no more ;)".

I am so grateful for your thoughts and advice! Thank you - hope you have a great 2015!!

Jan 02, 2015 12:03 am

Darius - you have much wisdom. That is so much appreciated. I had no problem reading all your advice. I have re-read what you said many times. You have been through so much. I wish you a great 2015 and I am working on me to have a good one also. Thanks and please take care:)

Living with Your Ostomy | Hollister
Past Member
Jan 03, 2015 12:14 am

Thanks JQ and Zywie.

I am more than happy to share my stories with someone who has gone through the same thing. I usually thought I'm one of a kind, but after reading too many stories, I felt that's the only place where someone understands... Didn't mean to take over your post JQ, but that's the first time I hear about someone's experience with UC since a young age.

Since you said that you've been on all kinds of anxiety pills and have gone through the side effects as well, I would like to take your opinion about amitriptyline 10-20 mg. I started with 10mg then rose up to 20mg. It did help me lots and I was satisfied with the outcome. The pamphlet is like a one-page newspaper, and I've also heard that there are too many advanced medicines for anxiety that have much fewer side effects. I've read and been told that it is an old-fashioned treatment for anxiety. I asked my GP if he can put me on something else, and he said as long as you have a very positive result as you say (better sleep, fewer nightmares, fewer mood swings, better appetite, less dependency, etc.), you better stay on it than trying new things. He also said that amitriptyline is the only non-addictive antidepressant. I will admit that I have an addictive personality and I'm wondering whether to stick with it or try another one with fewer side effects...


Jan 05, 2015 5:31 am

Hi, I'm not sure how to answer this, but I'm 56 and had stage 3 cancer which caused me to have a permanent ostomy for life. I have a cancer test every 6 months and the anxiety that goes along with waiting for the results can be overwhelming, and I'm sure you can relate to that. So what do I suggest? Perhaps just accept the notion that this stuff is scary and a part of our lives. I have read that you have prayed and have seen specialists, etc. and nothing has helped. So I guess there is not much anyone can suggest; sounds like you have all the bases covered. So in the end, it is totally up to you if you want this stuff to have the best of you or if you want to look in the mirror and decide to control it. Your choice in the end, I guess. You can do whatever you choose to do because you control you :)



Jan 06, 2015 12:46 am

Hi JQ, Darious, Zywie and sunasea.   I may be a lot older than most of you but I just started learning about this stuff a few years ago.  Before my cancers, chemo, radiation, surgeries and all the other crap that goes with them I didn’t know anything about anxiety and depression though I was close to people who suffered from mental illnesses. Heck, I couldn’t even spell PTSD.  Then, after a few surgeries, another round of chemo, a stricture, shingles, a year or so of pain I found myself to be very unhappy, quick to get angry and didn’t much care about too much.  My oncologist prescribed Alprazolam for the anxiety and it works well.  It helps me accept or ignore some stuff that might otherwise really piss me off.  Depression is something way different and I think I might have been experiencing withdrawal from pain meds without recognizing it.  I have a lot of respect for the mental health people who try to help us but I have way more respect for those who admit they don’t have a clue as to how a medical situation like mine would affect them.  Even here with this wonderful group of folks so willing to share and help, we’re limited because each of us has our own pain.  It’s ours and only we can feel it for what it is.  Someone else with identical medical maladies has their pain but it’s theirs.  I can try as hard as I can and I’ll never know if I can really feel it.  I want to, maybe just for a moment, but it’s not mine, it’s theirs.  So we continue to empathize, tell others we can relate and tell them what works, or doesn’t, for us.  I think the energy from our intentions might help.  I think our “listening” helps.  I got so much sincere, constructive help from so many special people here, I value it as priceless.  Sure I had to do my own struggling, fighting with myself and maybe that battle might continue on a much smaller scale but that’s just the way it needs to be done.  Drugs?  I Don’t know enough about them but if we can take something that won’t hurt us and it makes us feel better, why not?

I apologize for rambling and just want to wish us all well for 2015 and all the years after.