Coping with Anxiety and Sickness - Temporary Ileostomy Journey

Hi there,

Just thought I'd introduce myself and ask a couple of questions. I've been reading the forum and I have found it so helpful and so uplifting. Thank you for your kindness and openness.

And now I will reveal what a spaz I am ;)

I am a 40-year-old female, generally healthy but last year got a horrible attack of acute diverticulitis (7 hospital stays, an abscess, a perforation, etc). I had seven inches of my colon removed on 11/30/17 and though surgery was supposed to be laparoscopic and not require a stoma, I woke up with an ileostomy and a huge scar. I guess my infection was so bad and my colon had fused with my ovary so they had to go open. The bag is temporary - I have been told 3 months and I am more than halfway through assuming all is well and I can have the reversal when the surgeon said.

Recovery has been physically and emotionally taxing. I feel like a jerk even complaining about this because it's temporary, my diverticulitis is gone, and so many of you are combating much greater battles, but I'm struggling. For one thing, I'm physically repulsed by the hole in my abdomen. I know this is my own issue, but I'm kind of a lightweight. When my wound nurse came to teach me how to clean my stoma and change the bag, I fainted. Even now, 6 weeks in, I sweat and get dizzy when I change my bag. I am constantly aware of it. Like hyper-aware. I'm apparently a high-output kinda babe and a gassy, foamy one at that. I'm loud! I'm constantly experimenting with my diet, but I do drink a lot of ginger ale because I get so nauseated and then it's like my stoma has rabies. I have to empty my bag a couple of times an hour because I can't stand there being anything in it. I'm a generally anxious person, and I am finding that I am isolating way too much out of fear of being out and about and having something happen, which consequently has left me super depressed. Like can't get out of bed depressed.

And per this site's suggestion, I named my stoma - Charo. And the bag is The Love Boat. Just fyi.

I have had some skin breakdown in the early stages, found a great wound care nurse I now go to for skin issues, I am currently dealing with little painful red bloody blisters. And I had my first "blockage" last week after getting a little too intense with some watermelon. This has been pretty painful, and because I am a lightweight and traumatized by all this, I haven't been the tough cookie I tend to be about everything else. I also have just stopped a long course of pain medication, and that's not really a picnic in the park either.

I think what makes me feel so unsettled is that I still have another surgery that is not scheduled and that I keep reading horror stories about - the stoma reversal. So while I figured I'd have this surgery and be done with it, I now have to have major surgery, recover, deal with the bag, get the stoma reversal, and then recover from that. And again, I hope I don't sound like a whiner. It just frustrates me and adds to my already anxious and depressed state.

Thanks for letting me vent. Just curious what your coping mechanisms have been with this. Are you open and tell everyone you have an ostomy? Have you had those little red bloody blisters? They hurt! I suppose that's enough for now.

I hope you are all having a much less neurosis-filled evening than I am!

Hello Stomaella. I love your name as it kind of sums it all up.  I also really appreciated your written account of your experiences to date and can empathise with your situation and your feelings about it.

The things you describe are not unusual in the early stages of having a stoma, which is why I feel a bit sorry for those who are only going to have it temporarily. You get all that angst without the settling in and adjustment that tends to accompany a long term situation.

I coped with this early phase by writing rhyming verse to describe what I was going through because concentrating on that sort of writing was a functional distraction from the 'real-thing' and it did not quite sound like the sort of 'rant' that was going on inside.

All  the things you describe are realtively 'normal' for this type of condition and operations. However, you are right when you say it is 'traumatising' and this aspect should be taken seriously and treated accordingly to avoid PTSD.

I thank you for sharing you predicament and I am sure that you have helped a few others in expressing your thoughts in this way.

I hope everything turns out well for you in future

Best wishes

Bill 

Hello!

I had my reversal exactly one month ago today. I have been super open about having a colostomy as well as about the reversal. I figured if this was what I was dealt, I was going to own it.

The reversal went super well and there were no complications. Last summer, I had a botched hysterectomy where the surgeon burned my colon and cut my jejunum in half. I am missing about 1/3 of my sigmoid and had a small bowel resection, so I wasn't confident everything would go well. I hoped for the best and prepared for the worst. I had read a ton of horror stories about reversals, but mine has been great and recovery has been less painful than the earlier surgeries.

Hi Stomarella. Good original name for your stoma. Please don't worry about your scars. No matter what it looks like on the outside, it is the size of the heart on the inside that counts. I had never heard of this medical term until I had my procedure done, and I can tell you that there are a lot more people having this done than you can imagine. With me, if people don't ask me if I have a bag, I don't tell them, therefore they don't know. I consider myself extremely lucky, because I eat anything from watermelon to steak. By the way, I called my stoma STRAWBERRY, because to me, that is what it looked like. Flanges I think, are trial and error. I always use Hollister products, and I am fine with that. I also use a paste from another company because the Hollister paste used to burn when I had an ulcer. When in the hospital, they used Convatec, and in 2 days I went through 25 flange changes. After surgery, they used a vac machine on me, a good thing, because I ended up having 3 surgeries. My abdomen looks a mess. Did it affect my sex life? Oh yeah, not for my wife, but I could not bring myself to have it. I have been married for 42 years, but until now I could not bring myself to enjoy it anymore, because I put myself in her shoes, and I know the sight is not very attractive, but time cures all. I had superb in-home care which helped me immensely and that is key. I hope everything goes well for you in the next little while, and please keep in touch via these posts.

Raydog.

Thanks Bill, for the warm words. I like the idea of rhyming. Maybe I can be the first major ostomy rap artist? ;)

I agree with you about PTSD treatment as it, for whatever reason, is upsetting to me more than I ever thought it would.

Again, thanks so much for your kind input :)

S

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

Thanks for writing, Jenergprise. I'm so glad that after everything you went through, your reversal was easy. What has recovery been like for you? Are you up and running after a month?

Hugs,

S

Thanks Raydog! My stoma looks like a strawberry too. A demented one. Thank you for your supportive words. I use Hollister and Convatec products as well, and Adapt spray. The paste irritated my skin and I also got so overzealous about it fearing a leak! I am glad you are able to eat with reckless abandon and you are so comfortable.  

Are ulcers common with ileostomies? They seem to be referenced a lot.

Cheers,

S

Welcome to MAO! You came to the right place to learn and vent about life with an ostomy. You are so lucky... you made it through an illness, surgery, and are now healing to be reversed. Try not to beat yourself up about the stoma and changing your wafer and pouch. I fainted all of the time in the early days....LOL. My wound nurse would say... you are not going to faint... I would reply... yes I am... and down I would go. One time I woke up on the floor with my cats staring in my face purring. Anyway, I made it through... one day at a time.... and here I am today. Five years later, my stoma and I have embarked on many adventures. Life is not perfect, I am not perfect, and I never was but I know that I am doing the best I can with the cards that I have been dealt. To get through the early days of emptying and the thought of messing with BM, I say it is contents from my stomach, even though it is my ileum. It makes me more comfortable. BM, in my mind, exits from the backside not my belly... so this stuff is more processed stomach contents. Hope this helps! Also, for odor control, try an ostomy deodorant. I like Na'scent the best but everyone has their own preference. In addition, you may want to join a support group too. Check out the www.ostomy.org webpage. They list the support groups by state and location. Best of Luck to you! We are here to offer our courage, strength, and hope. Sincerely, LadyHope

Hi Stomarella....I love your name. I'm Marsha, and I've had my ileostomy for more than 50 years...since I was a teen of 15. I was a child of 12 when I became ill with ulcerative colitis, and was out of school, and in and out of hospitals, 4 years. My life was "on hold" until I got well, which in a child's world seems like never. When I heard I could have surgery, I cried out of happiness. I didn't quite understand what they were going to do to me, but all I cared about was that I could go back to school. There were no stoma nurses back then (1965), but a very caring, but blunt, resident, took me in hand and made me learn how to take care of myself. I came to see the mucosal stoma as normal as the skin in our mouth, or the inner lips of our vagina. As a female, we are used to bloody output, and I think that's what got me through the change. So now....I have a barby butt, and a working one on my belly.

Do we need to think of it as a disability? I was 16 and was determined to get back to the life (at school) that I'd missed. Although I had permission to use the teacher's bathroom, I chose the student one instead. I didn't want questions asked. I started dating....told some people, and didn't tell others. I married, had children, went back to school to finish college, got divorced, and am dating again....for the last 20 years.

It wasn't all as easy as it sounds. It took time and effort, and a lot of support, to get through the difficult times. My ostomy is my badge of survival. But you have to travel your journey. Over the last 4 years, I've had one medical issue after another (not related to my ostomy) and then an infestation of bed bugs (in my room) put me over the top. I cried incessantly, couldn't function, had insomnia, or slept all day....and all night. I lost interest in going anywhere, and my weight skyrocketed. It took working with a therapist for a few months to realize that it wasn't just depression, it was full-blown PTSD. After all I'd been through.....it's like the bugs were the "straw" that broke me. Anxiety is debilitating, and I couldn't handle it on my own. But doing the work to get over the depression and anxiety is also a challenge. My body has been scarred up and down, and right to left....since I was a kid... Dating wasn't easy, but I did marry. I'm dating a man now who sees past all my "flaws". They bother me more than they bother him.

To answer a few of your questions....ulcers on the skin are not unusual, especially when one has had ulcerative colitis. I had a painful "ulcer" under the stoma, which burst, and sprayed red blood all over my friend's white bathroom. That was an emergency trip to the hospital, to be cauterized. And then it happened again...the next day. I had to give up all carbonated beverages because of all the gas (and sometimes pain) they caused. Milk and dairy products can also trigger loose/liquid stools. To get over my anxiety, I began listening to "mindful meditations", google it on your cell phone, and save. Whenever the anxiety level increased, I would do really deep breathing, and lay down and listen to a meditation. I would do it at least 3-4 times a day....as many as needed. These days, I only do it once or twice. Pick one issue that you want to face.....(reduce anxiety) and work on that. It doesn't improve overnight, but if you do positive things to counteract the emotions, you'll feel more in control. I never named my stoma, and am envious of others who have.....Rosebud was the best of the names I've heard, but Lady Hope has "Stanley" and my friend goes to sleep with her "George". I've rambled on enough. If you want to chat....please feel free to write, or we can do a private chat. Best of luck to you. Marsha.

Hi Stomarella,

Welcome to MAO. Everything worked out for Cinderella.....just saying ;). Hope everything works out for you as well. I just want to encourage you to take one day at a time, or even one hour. Why worry about what may happen in the future when we can't do anything about it but prepare in case. I also believe a positive attitude helps us hold on to what we want to happen. I know easier said than done but if you put your mind to it, you can do it. Meanwhile, we're here to support you and will share what we know if we think it will help, as you can see. You know you're a pretty strong person to get this far, so don't give up!

Best wishes!

Good morning!

I am doing well. I know how you feel as there can be a lot of anxiety around the reversal.

I didn't get used to my colostomy for a long time. I had mine for about 6 months. I would say about the three-month mark I became comfortable with it. The whole process was so much to deal with at first. I was already nauseous and changing the bag made me throw up every time. After time, it became a part of me and my life. I was very careful and diligent about care, etc. You have to remember that Rosebud saved your life. That is what my wound nurse called it. :)

These surgeries are hard on the body; I have and will always have limitations now; I went in for a simple hysterectomy and ended up with a life-changing emergency; there are adhesions, risk of hernias, etc. associated with this, so always be prepared.

As I said earlier, I hoped for the best and planned for the worst.

Hi. You are definitely not alone in how you are feeling. I also hated having to change my bag or even look at it. I thought I would never get used to it. The first time the nurses tried to show me in the hospital after my surgery, I just cried and said I couldn't do it. My situation was made so much worse as I also have OCD and was afraid of germs, so I couldn't even bear to touch it to clean up without gloves on.

I also became depressed and had to see a therapist who said it was such a major trauma to your body and a huge adjustment that sometimes we just can't cope with it all.

14 years later, this all seems so long ago and believe me, it didn't get easier overnight. I agree with others that over time it just becomes a normal way of life and suddenly you wake up and it just isn't an issue anymore.

Don't beat yourself up for how you feel right now. You have been through something extremely major and wouldn't be human if it didn't have some affect on you. Just trust me when I say you WILL be OK. If I can do it, anyone can. Take care xx

Don't feel alone! Although I have made the decision to keep Maxine and have gone through a revision surgery on February 17th, 2018, I still have anxiety. When I had my emergency surgery on the 12th of July last year, I noticed that every night between 5pm until I went to bed I was getting horrible anxiety. I worried and worried about every little ache and pain. I was terrified that the rest of my intestines were going to just "up and die" like my lower colon did. It eventually got better until I started to suffer with the horrible pain again which led to the revision surgery this February, which was once again an emergency. I was terrified again that I wouldn't wake up and that this time when I went under, that was it!! However, God had other ideas for me and wasn't done with me. He woke me up just fine and things are working so much better now. The doctor said that I had one of the worst strictures of an Iliostomy that he had ever seen in his career and horrible adhesions that just made everything shut down. He told me that I was very wise to come to the ER when I did as things were looking very bad for me. Once again, God put me in the right place at the right time. However, that being said, the old anxiety and worry came back two-fold stronger and I currently am dealing with it. My VA psych doctor and therapist are not sure why I have it but are attributing it to the PTSD acting up which makes a lot of sense to me. I do have some medication that I take at night that helps a little and I am hoping that now that everything is finally working as it is supposed to that this anxiety will slowly go away. I was just so scared that I wouldn't make it through that I worry about "the next time". I have to keep telling myself that this is the last surgery and everything will be good. I am no longer a candidate to be hooked up again, however. The doctor stated that there was just too much stuff that was not in good shape. He did say that although my intestines that were enlarged and messed up from the stricture would go back to their old size, which is really good to know. I wish you the best of luck and you are so lucky to be hooked back up. I just couldn't bear to go through another stomach surgery again. The scar runs from just under my sternum to just above the top of my pelvic bone. Then I have the two cesarean scars that go the other way, so no two-piece suits for me anymore. But at 63, who wants to wear one of those anyway? Please let us know how you are doing, OK? Good luck and God's Speed!

Ya know folks, sometimes there's just no guarantee that what we say to someone who's hurting will be good.  Maybe it won't even be OK.  Hopefully it won't be bad but even that could be the end result of a very well intentioned comment.  All of us here have gone through all kinds of crap; some worse than others and some the same.  What worked for some might not put a dent into others' pain.  We're different from each other and we respond differently to things.  The one thing we seem to have in common is our endeavers to help each other.  We're blessed to have that and if we recognize the effort that's put into that venture, who knows, we might even feel a little better knowing others really care.  

There's good reason we hurt like we do or did.  We don't need to apologize for any of it.  It is what it is and we will get better somehow, sometime.  I'm just thankfull we're here together helping each other.

Respectfully,

Mike

well said mike!

I just wanted to thank you guys for all the kind responses. They all made me feel so much better and so less alone. For some reason, I stopped getting notifications that there were responses to this post and maybe I came off as whiny or just another pity party. I am relieved my feelings are validated and there are smart, articulate people like you all to communicate with as I go through this experience.

I had a fun barium enema/CT scan Wednesday and I'm healed up and clear for the reversal. Just have to get the health insurance authorization and all that good stuff and then I can schedule it. As expected, the reversal is giving me anxiety too, as I have read many horror stories, but regardless, I am just looking forward to feeling good/better once again. Having the bag temporarily is kind of a mind trick as you struggle to get used to it and accept it, and just when you start to get the routine down, you get it reversed! But I am not complaining.

Again, just showing some gratitude for these kind, considerate, and empathetic messages. Charo (my stoma) and I think you all rock! xx