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BetterBowels
(@betterbowels)
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26/06/2018 5:12 pm  

Hello fellow ostomates,

I hope this post finds you all well. Very soon after I was oriented enough to use my phone in the hospital, I found this website. Not only would I like to thank Eric, but I'd like to thank all of you for sharing your experiences and feelings about your ostomy. Whether it be positive stories of how successful their ostomy has been, or brutal honesty about how much they hate their ostomy, I found everything I read to be helpful in some way or another.

I'm here to tell my story, which is a mix of positive and negative experience. Please bare with me through a long-winded explanation of how I got to where I am. Although long, it’s an interesting story (or at least the start of one).

**This story may contain triggers for victims of sexual violence**

Let me begin from where it all started....

I was about 13 years old and stomach cramping, frequent trips to the bathroom, and painful bowel movements forced me to find a doctor to help relieve my pain. I say "forced" because I'm not one to typically enjoy a visit to the doctor. A new diagnosis with every trip, or the phrase 'It's just stress' became all too familiar to me and my mother. After months of testing, no one (including myself) had even thought to test for Ulcerative Colitis - a disease which plagued my father for a vast majority of his life.

Finally, we quit making appointments, following up with referrals, finding new "amazing" doctors. No one could help, and it became clear that the medical field was not kind to someone like me - government insurance, inability to pay for a "good doctor." With my complaints swept under the rug time and time again, we decided to manage this illness on our own. I avoided foods that caused more pain for me, joined sports to be healthier, and focused on anything else.

Years past and I found myself a freshman in college. With final exams approaching in April, I studied hard to finish my first year at Western Michigan University. After all, I'd worked hard all year to maintain a 4.0 and make my mark at this new home. As I prepared for these exams, something started to feel very "not right." I couldn't keep food down (Sure, caf food could be disgusting, but this was something else entirely) I couldn't leave my room for fear of being too far from a bathroom, and I could hardly keep my eyes open to study.

After noticing blood and mucus in my stool, I made an appointment with a campus doctor. This would be my first good experience with a doctor - ironic, considering I had a rectal exam done. She was no younger than 60 and listened as if I had something to say. She asked questions without assuming the answer, and she made jokes when appropriate. It became clear to me her goal was to help. She helped me schedule a colonoscopy for after exams (and my return home), gave me some suppositories and Prednisone, and left me with a possible diagnosis: ulcerative colitis.

Long story short, I was diagnosed with UC shortly after the colonoscopy and did everything in my power to make my life about more than just IBD. Sure, I was still using the bathroom with urgency, experiencing pain, and finding more fatigue with every passing day, but I had enough depression. I didn't intend to contribute to it.

Fast forward to March 2018. I'd changed my life quite dramatically in the past seven months: I worked hard to lose weight (200 pounds to 150 pounds), I ate better, and for the first time in my life, I was happy. Although I'd been dealing with another pesky kidney stone, my health was still better than normal. I'd dealt with stones before and I wasn't gonna let this one stop me from going to work. My urologist advised to let it pass (it was now at the end of the ureter - just waiting for a trip to the bladder), but it seemed to be stuck. He prescribed some Norco to help ease the pain and I knew from past experience that opiates could really be harmful for IBD.

Nevertheless, I stooped to taking one occasionally for pain. I mark this as the rising action because (just as predicted), my UC flared. This was worse than every. For a week, my rectum burned with a vengence. The fiery depths of Hell could hardly compare to this amount of burning. After my GI cancelled two appointments in a row and a potentially new GI cancelled our appointment, I took a trip to my primary doctor (nurse practitioner). She prescribed Prednisone to help with the flare up and did a rectal exam with no evidence of abcesses, fissures or the like.

Although I couldn't imagine it happening, pain got worse the next day and I went to the Emergency Room at McLaren hospital. After a night of pain and many unsuccessful analgesic drugs, I awoke from not a sleep but a daze to see my nurse had left and been replaced by a male nurse and another female nurse. Pain shot through my lower extremities and out of concern, the male nurse advised that he would have to "take a look." Mostly due to the amount of pain I was experiencing in my rectum, I refused. Through tears, I begged him not to attempt an exam. He ignored my pleas and continued anyway. Meanwhile, the female nurse stood facing me at my bedside. He probed my rectum with his finger, when it was over, all I could relay was, "No more men" to the nurse who stood facing me. She and this man moved my bed to the ICU (I'd stayed in peds for the night due to overflow).

When I arrived at ICU, the male nurse had disappeared, and it wasn't long before "the only doctor qualified" in the hospital was in my room to do a rectal exam. I couldn't tell you what he looked like, or even how his voice sounded at this point. Between screams of "NO" and tears pouring from my eyes, he conducted yet another useless exam. At this point, I was beyond terrified – I was angry and I could no longer focus on the main goal of getting better.

To shorten an already lengthy story, I had an emergency partial colectomy on April 24th, and didn’t fully awaken until several days later. On April 30th, my surgery advised I be transferred to Henry Ford after coding. She had done everything she could and admitted she wasn’t very experienced in these surgeries. I had a white blood count of over 58,000 and there was hardly a reason to believe I would survive sepsis.

So, in the early hours of April 30th, I was transferred to Detroit to spend what would probably be the last few days of my life. A surgeon, Dr. Joe Patton, visited me shortly after my arrival and explained in full honesty that the chances of getting better, were slim to none. I could hardly listen to a word he said after “I’m gonna be completely honest: this doesn’t look good.”

However, to my surprise, I woke up soon after the surgery (a wash out of organs to remove some infection). I was informed that I would have another surgery the following day. And on May 1st, I endured one last surgery (a total colectomy).

After weeks in the ICU and a few more days in general recovery, I was discharged to complete my recovery at home. With only a few setbacks, my recovery has been very successful. My focus has remained on getting my body back to normal, and I can honestly say that my ileostomy has been a blessing. No longer do I suffer from excruciating pain associated with UC. No longer do I worry about having incontinence in public. I realized quickly that the key to living with an ileostomy was to see this as only a side note in my story. Your life doesn’t have to revolve around an ostomy. I know I’m fairly new to this lifestyle, but I refuse to let it become an obstacle. As far as I’m concerned, I’ve just gained a quality of life, not lost it.

Again, I’m sorry for such a long entry. Thank you for reading, and I hope to be welcomed to this community by all of you.


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Bubbles
(@bubbles)
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Posts: 244
26/06/2018 6:57 pm  

Wow crazy story so sorry for what you have been through. Very happy you survived and are here with us . Yes I agree an Ileostomy can be a blessing in disguise. It was for me too . I love my stoma ( Bubbles) she gave me a life back . Your  next chapter is all fresh and new and I wish you very happy tomorrows .

Be well , Bubbles 😎


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Dona
 Dona
(@dona)
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Posts: 672
26/06/2018 7:13 pm  

Thank you so much for sharing your story. We certainly get here via many different paths. Yours sounds very challenging and I am happy and amazed at your positive outlook for the future. It is extremely helpful to look ahead and take away the 'good stuff' from your past experience. Trite but true.  Its bad enough to be ill without having to fight through various degrees of care. I think we have all seen good and bad ones, but all I can say is WOW!

I'm with bubbles, there, my surgery and illiostomy ( 3 years ago now) gave me my life back.

Someone said once that although some condition was a part of them it did not define them.

Anyway, welcome to the forums!

 

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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BetterBowels
(@betterbowels)
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26/06/2018 10:13 pm  

Thank you. I'm grateful to have found such an inviting group of people. If nothing else, it's always comfortable to belong somewhere. I hope to find a lawyer soon to fight the doctor t the first hospital. I struggled with this decision for some time, and after finding new information, I realize this was more malicious than I'd originally let myself believe.


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BetterBowels
(@betterbowels)
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26/06/2018 10:25 pm  

Thank you for the warm welcome. I found it harder to tell my story due to the risk of sounding like I'm complaining than admitting what had happened. Just before my surgery, I was beginning to be able to move on from childhood sexual trauma. The events at the hospital brought up much worse symptoms of PTSD, and now I'm contemplating suing the hospital for medical malpractice. Part of me feels it's the right thing to do, and the other part is worried about the toll it may take on my mental health. It's quite a dilemma I guess.


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LK
 LK
(@dlkfiretruck)
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Posts: 529
27/06/2018 12:05 am  

Wow...here too!  Yes, we all have of stories of survival and abuse not just from an outside source, but also from doctors.  Being told to just go home and have sex with my husband would take care of everything was no laughing matter to me.  The results were more appointments and often further insults due to likely past doctor notes, and further unnecessary suffering . I have a fav. words for those...!  You get it. I admire your ability to entertain suing.  I have a few I would like to add to that list.  I do not have the means or the energy to sue.  But maybe if I had had some encouragement it would be different.  One thing I worried about was being able to get another doctor after doing so,  and not being dropped by the present one.  Are there rules to protect you in that matter? 

You are welcome in this group and can share what you like as no one will judge you. You can get answers and ideas to anything you bring forth. Eric is awesome and I will forever sing his praises.  Thank you again Eric.  I found him at a time when I needed it most. But before the ileostomy would have been best for sure. 

Watch as many videos as you can , they are so worth it.  The group is amazing. 

Check in whenever.  Best of health to you.

Linda 

Linda


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BetterBowels
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27/06/2018 12:45 am  

Thank you for sharing. I too worried about that. However, after I was transferred from McLaren (where the assault occurred), Henry Ford staff went above and beyond to make me comfortable. I had only female nurses, my team consisted of five very amazing female doctors, and I was never even asked to be subjected to care by a male doctor/nurse/transporter. They took every concern very seriously and even talked to me about pursuing legal action. I've found that many offices accept cases and are only paid upon winning your case. If I do pursue this, I'll definitely need that kind of arrangement. 

In fact, I was very reluctant at first when it came to pressing charges or filing any kind of lawsuit. In all honesty, I was coming up with excuse after excuse as to why I should just drop it. However, upon reading my medical records and reports by doctors who hd seen me at McLaren, I became quite unsettled by the constant lying and blatant cover up tactics. It's clear to me the hospital has not only done this kind of covering before, but that this man (the doctor) has conducted himself this way before. When I told an OB/GYN who saw me just after the incident, she knew who I was talking about without even reading the chart. She said his name with such confidence, that I suspected then he was guilty of previous assault.

Anyhow, thank you for the welcome. I hope I haven't caused the resurrection of any traumatic memories for you. I admire your strength for sharing this with me.


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LK
 LK
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Posts: 529
27/06/2018 1:04 am  

Darla, thank you for your sensitivity.  No, it is okay for me to remember these things.  I realize how much stronger I have gotten because of them.  I admire your strength to go thru with this  and I think it is important for you to do this. You may be saving a life or two in many ways.  My UC was ignored for so long that ten years became 30 .  Annoyed and fed up, I doubted myself.  Be encouraged here, you deserve encouragement.   I love that your heart and mind were looked after in your hospital stay also.  That is amazing. 

Best of luck in this journey.  Evert day is new and a step further into healing.

Linda 

Linda


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2338
28/06/2018 11:47 am  

BetterBowels, thank you for being a part of this community and sharing your story. I can't imagine what that must have been like and the PTSD from such events are no joke. 

If I were you, I would absolutely pursue legal action as it sounds like there's a history there and I'm sure there are lawyers who would be happy to pick this up.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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VeganOstomy
(@veganostomy)
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Posts: 2338
28/06/2018 5:49 pm  

Note : Please keep this thread level-headed. The experience that BetterBowels had is not good, but I don't want this thread to go way off base.

Let's keep things positive in welcoming this new member. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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