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Temporary Ileostomy and anxiety and the blues and just general ickiness. . . HELLO! ;)

Posted: Sat Jan 20, 2018 2:14 am

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 Wink

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 laproscopic 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 half way 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 combatting much 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 times an hour because I cant 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 neuroses filled evening than I am!  

 

 

Posted: Sat Jan 20, 2018 4:25 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 

Posted: Sat Jan 20, 2018 2:46 pm

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. 

Posted: Sun Jan 21, 2018 9:39 pm

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 proceedure done, and I can tell you thatthere 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 extreily lucky, because I eat anything from watermelon to stake  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 holliser products, and are fine with that.  I also use a paste from another company becaus the Hollister paste use to burn when I had an ulcer.  When in hospital, they used Convatec, and in 2 days I went through 25 flange changes.  After surgery they used a vac machine on me, good thing, because I ended up having 3 surgeries.  My abdomen looks a mess.  Did it effect my sex life, oh ya, not for my wife, but I could not bring myself to have it.  I have been marred 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 super in home care which helped me emensly 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.

Posted: Mon Jan 22, 2018 1:15 am
Bill wrote:

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 


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

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 Smile

 

Posted: Mon Jan 22, 2018 1:19 am
Jenerprise wrote:

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. 


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

Posted: Mon Jan 22, 2018 1:36 am
Raydog wrote:

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 proceedure done, and I can tell you thatthere 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 extreily lucky, because I eat anything from watermelon to stake  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 holliser products, and are fine with that.  I also use a paste from another company becaus the Hollister paste use to burn when I had an ulcer.  When in hospital, they used Convatec, and in 2 days I went through 25 flange changes.  After surgery they used a vac machine on me, good thing, because I ended up having 3 surgeries.  My abdomen looks a mess.  Did it effect my sex life, oh ya, not for my wife, but I could not bring myself to have it.  I have been marred 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 super in home care which helped me emensly 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 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

Posted: Mon Jan 22, 2018 9:57 am

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

Posted: Tue Jan 23, 2018 12:23 am

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 use 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 a 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, is 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 t he 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 over night, 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 bestof 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 chatt.   Best of luck to you.   Marsha.  

Posted: Sat Jan 27, 2018 11:11 pm

Hi Stomarella,

Welcome to MAO. Everything worked out for Cinderella.....just saying Wink. Hope everything works out for you as well. I just want to encourage you to take one day at a time, or even on 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 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 your a pretty strong person to get this far, so don't give up!

Best wishes!

Posted: Sun Jan 28, 2018 9:12 am

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 rosebudsaved your life.  That is what my wound nurse called it. Smile 

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  a

as I said earlier, I hoped for the best and planned for the worst  

 

Posted: Mon Feb 05, 2018 5:49 pm

Hi. You are defintitely 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 situaiton was made so much worse as I also have OCD and was afraid of germs so couldn't even bear to touch it to clean up without goves 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 nomal way of life and suddenly you wake up and it just isn't an issue any more. 

 

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

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