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Newbie with unusual colorectal journey seeks advice  

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MsRiss
(@msriss)
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Posts: 6
April 7, 2020 1:32 am  

Hi all!

 

I hope you all are doing well and are staying home safe from COVID19.

I have struggled to find anyone with similar issues to connect with, so I’m hoping to find some people who relate here. 

Warning*** it’s a long read

At 18yrs old I became very ill with vomiting and constant constipation. My weight was going up and down by 15lbs consistently. I saw several gastrointestinal specialists and was eventually pushed off as a depressed teenager with an eating disorder. A year later, still plagued with the same issues I was seen by a specialist 4hrs away and he was shocked at what my barium enema films revealed. I was diagnosed with redundant bowel. Basically my large intestine was twice as long as it should have been and it was laying in a jumbled pile behind my uterus. I was immediately sent to a colorectal surgeon who determined I needed to have a subtotal colectomy, rectal prolapse repair, and appendectomy. I was 19 when I had the surgery. Unfortunately, the surgery was not successful in resolving any constipation. In fact it was worse and the only way I could pass stool was via enema. Two years of fighting through testing, diet, exercise, medications, an ileostomy was suggested. To be honest, I freaked out and decided I would just live with what I had and pray for medical advancement. 

10 years pass with MANY hospital stays, no answers, many tests etc. After a second pseudo ileous bout and NG tube, I started seeking a dr who could help. During those 10 yrs, I was also diagnosed with endometriosis. I had 4 surgeries to remove endometriosis, then two csections, then urgent hysterectomy. Basically no one wanted to see me or treat me because of the amount of surgeries I had already had.

I met my current colorectal surgeon and then began the last 7 yrs of constant surgeries. In order, this is what has been done:

2013-total colectomy with ileoanal anastomoses.

2014-scarring and strictures at anastomoses site surgically removed through rectum

2015-rectopexy due to my small bowel falling to the bottom of my pelvis behind my rectum

2016-another rectopexy

2017-grade 4 rectocele developed and was surgically repaired

2018-grade 4 enterocele and rectocele as well as pelvic organ prolapse repair. Basically my intestine was laying on the vaginal canal internally as well as fall through my pelvic floor behind my rectum and bladder. I had two points of self correcting intucesseption. One being where my original anastomoses was, and another at my rectum.  FYI-Not for the faint of heart if you google that. BRUTAL.

2019-just weeks after the above surgery, the rectocele repair isn’t quite holding. A rectal exam shows my sphincter muscles are way too tight from years of profuse uncontrolled diarrhea. 

May 2019- Transvaginal rectocele repair

June 2019-Anal sphincter dilation under sedation. Done as our patient, I barely made it out of the elevator before I began to leak fluid profusely from my rectum. We go back in and there could be no determination as to why this happened. 

2 days later I’m in the emergency room severely dehydrated. Get sent home

2 more days later-I see my surgeon again. He takes one look at me and admits me directly to the hospital and tells me I need to have an emergency temporary loop ileostomy. I spent the following two days receiving fluids and meds to prep for surgery because I was too weak. 

I wake up from ileostomy surgery and it’s terrible. I’m hurting horribly. Day 2 post op my abdominal swelling increases. Day 3 I’m given an NG tube. Day 4 I’m rushed back into emergency surgery, my massive incision was reopened. It was found that my intestines had twisted and folded on top of themselves. This was corrected and I was staples back up. I then begin TPN and attempt to heal. 13 days in the hospital and I finally get to go home. 

July-Aug- 5 admits to hospital for dehydration.

Sept- PICC line placed for fluid therapy at home. Tech placing PICC touches my heart with guide with and my heart freaks out. 4 more days in hospital on cardiac watch.

OCT- Wake up to my arm with PICC huge and purple. Blood clot. DVT. Blood thinners and close watch

End of Oct-Very high fevers, horrible body pain. Go to ER. I contracted a very very rare blood infection through my PICC line. In hospital for a week and infectious disease monitoring.

Nov-PICC removed. Now dehydration returns.

Dec-Finally cleared as healthy enough for take down surgery. Christmas Eve, my loop ileostomy was reversed.

Today-constant rectal pain. Feels like a rectocele is returning. Abdomen swells with most meals. Nausea around the clock. Meds around the clock to try to help. I’m so lost as to what to do. I’m exhausted and my body is SO tired. Permanent ileostomy has come to mind. Two recent bouts of in continence and I do not want to wear diapers long term. Ileostomy was tough because I had extremely high liquid output to the total of up to 2 liters a day. Hooked back up, I have about 10-15  bowel movements a day on the max level of meds I can take. At least 4 during the night.

To anyone who has taken the time to read this, thank you. To anyone who has anything to share, suggest, anything, please, I’m all ears. 


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john68
(@john68)
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Posts: 1537
April 7, 2020 3:06 am  

Hi MsRiss, Welcome to the forum. It’s been a harrowing journey not an easy either when your so young. Telling someone what to do is a big responsibility and especially with serious health problems. My thoughts would be to consider a permanent stoma. Ok it may not totally cure all problems, but would it not give a better quality of life. I am only one voice here so listen to the other advice that folks will post. Keep in touch and best wishes 👍


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VeganOstomy
(@veganostomy)
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April 7, 2020 11:16 am  

Welcome, @msriss. My word have you been through a LOT. 

From the timeline, it looks like you had a loop ileostomy for approx six months. From experience, 2L of output per day is a lot, but not too far off from "common", but it also depends on how much fluid/food you are consuming. The dehydration is obviously an issue if you are outputting that much and can't replace it fast enough. Many people will find that their body will adjust over time (years) and output will slow down as the body learns how to adjust to the new piping, but there's no guarantee that would happen.

Has your surgeon or doctor (are you seeing a specialist for this?) suggested the permanent ileostomy or has this only been something you've thought of? Would you be removing your rectum too (I'm assuming yes, since it's a huge source of your troubles)? 


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dieffenk
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Posts: 28
April 7, 2020 12:40 pm  

Hi , and welcome. You have found a great site. I have found this a great comfort and information site, I am 68 and not into social sites , but I have found this to be a great help. 

It is amazing what you have been through, and I don't really have any insight for you. I have had Crohn's for about 47 years with many surgeries. I have a colostomy in October and have found it to be my hardest challenge. But, as of right now things are looking much brighter. 

I have fought through depression which I'm assuming you have to , because of all you have been through. 

I just wanted to take the time and let you know , to hang in there. When we thing we have heard the worst stories, unfortunately there always seems to be a worst scenario.

I wish you the best, and Eric has been a great inspiration for me.

kevin

 

 


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LK
 LK
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April 7, 2020 1:05 pm  

MsRiss...Welcome to VO! I'm  so sorry for what brought you here tho,   but you are in good hands here! Ask anything you need to ask, no question is a dumb question.

I am sorry to read of all your struggles and you have certainly had many? Plus your a Mom on top of it all. 

I too had two  C-sections among my gut issues and it did not help much with the gut either. Scar tissue can really cause problems and it seemed I was a mass producer of it!  I have had 9 Bowel surgeries but my history is not as complicated as yours.  I admire your stamina and your grit! I too dealt with a severe constipation for way too many years starting at age 10. Constipation as long as 18 days without bowel movements often prompting other expecting mothers to ask when my baby was due! I recall but not regret shocking a few by responding just as soon as I have a really good s**t thank you very much. During that time, I could wake up much heavier each  day  &  loose it all by bedtime. It was never without excruciating pain, nausea, dehydration & bleeding and a few times,  passing out on the toilet only to be awoken by my 5 yr. old, doing just as was directed ...throwing cold,  sopping wet wash cloths in my face! She was good at it too, and maybe perhaps enjoyed the "fun", but she also knew well how to call Gramma and say Mommies sleeping on the toilet again! I can chuckle at it now, but back then I was exhausted and worn  down and lived thru many friends or Gastro's,  opinions & useless, unkind comments and several Gastroguys who had not enough "up to date" schooling to figure what was wrong.        The end result of a 9th Gastro opinion,  and diagnoses came from one well schooled Hero of mine who ordered a Motility test and found  what the issue was at that time. A location move for us and several odd diagnoses given and since  removed, leaves me with my appreciated  ileostomy and a ton less trouble then I ever had ! 

I need to ask if you have and if not,  would like to suggest if you have  ever  considered seeking help at a University where Medicine and Surgery are taught,   to perhaps consider seeking an opinion from such an institute.  I realize it may well mean further testing which we all know can be gruelling, but Universities  trade information with other learning institutes so you would have all the up to date information available to you.  

Your location may make this difficult but may well be worth the effort.  Keep a journal of your gut issues, list your medications,  doctors, you've seen, contact phone numbers, results, surgeries, and have a question list,   leaving room in it for answers.  Take it with you to hospital, Doctor apts. ect. this is a useful tool when your exhausted and  need to remember such details.

Regarding  permanent  Ostomy, only you, your wallet, your specialist and lately, toilet tissue supply and demand, can decide the necessity of it, but it is certainly not something I have ever regretted for one iota of a second!   For me, it was/is a God send and the last surgery I required 11 years ago. My miracle maybe,  another, was stumbling on Eric's site right here! Thank you Eric!

I know the COVID19 virus complicates issues right now for you and so many of us, but take steps to avoid being in public, you do  have a compromised immune system, so try and be vigilant   and in protecting yourself and  your family. You really are not alone here, we all have experience in one area or another and what questions one can't answer someone else likely can. Check in often, keep us in the loop, we are here for you. 

Be well....

Linda

 


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Dona
 Dona
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April 7, 2020 3:00 pm  

Welcome MsRiss,

You really have had an amazing and difficult time. Thanks for introducing me to so many new words. ( ouch!)  I hope you find some information and solace  both medical and psychological.  I am happy that you have found this amazing site.  Keep up the conversation.

I have a permanent illisotomy which I am happy with. 


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MsRiss
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April 7, 2020 3:14 pm  

@john68 Thank you for the kind words! It is encouraging to hear of great relief long term with permanent ileostomies! 


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MsRiss
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April 7, 2020 3:17 pm  

@dona Thank you for reaching out! It is quite isolating at times so I appreciate your response. Hearing of others with issues and end game relief with permanent ileostomy is amazing ❤️


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MsRiss
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April 7, 2020 11:12 pm  

@veganostomy Hi! My surgeon is the leading expert in colorectal surgery in Texas. We have an amazing relationship and even frequently keep in touch via text. I see him every 2 weeks so he can keep track of my issues as it appears to have no end. He did send me to a few other gastrointestinal specialists for another full work up and a second set of eyes to review it all. I also saw the head of the colorectal team at UT Southwestern here in Texas and they were completely perplexed as to why I have so many issues. I was feeling the best I had in several months when I had my take down surgery this past Dec. My surgeon will not do more “repairs” to maintain my current state of not having an ileostomy. It is too risky to continue having surgeries. I am seriously considering going the permanent ileostomy route as the constant rectal spasms pull on the pelvic floor repairs I’ve had. I’m really very torn because once the loop ileostomy was placed, it felt like a crazy ride of everything that could go wrong did. No one can tell me how long I may have had the blood infection from my PICC so I’m not sure if that was part or all of the source of issues. I had non-tuberculosis microbacterium bacteremia. Hair fell out, output would turn super dark green, abdomen would swell, stoma would shrink and turn greyish in color, and then output would become pure slime and come out non stop. 2 liters within 8hrs. This happened at least once a week. Then I would have intense rectal pain and urgent sensation to pass something rectally. It would last for a few days, several times a day. Each time passing approx 200cc of mucous rectally. I also began experiencing super low blood sugar that could not be explained nor predicted. Best guess was that I perhaps had reactive hypoglycemia. I’ve never had diabetes or high (or low for that matter) blood sugar. Every thing that could be sent to the lab as a sample was, and they never found anything. Blood infection was found by my blood sample being sent to the Mayo Clinic in Minnesota. 

I’m fine with a permanent ileostomy and/or rectal stump removal but I certainly don’t want to relive the above. I haven’t been able to find any other people with similar issues. Right now I’m considered extremely immunocompromised because of the above so I am camped out at home until this COVID stuff calms down.

I’m not looking for anyone to tell me what hat I should do, but more or less what has anyone tried for similar issues? Rectal stump removal- any lower pelvic pain after recovery period? permanent ileostomy- high output controlled or is it forever? Anyone know what all this slimy mucous output is? 


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MsRiss
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April 7, 2020 11:42 pm  

@john68 Thank you! I agree not all symptoms would go away but hoping many would. My family looks at me like I’m crazy to consider more surgery but my husband is cautiously supportive of all things. Reading y’alls stories and kind words is so super helpful! 


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MsRiss
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April 7, 2020 11:54 pm  

@dlkfiretruck Thank you for kindly sharing your story! It’s incredible that your little love could get you help when needed ❤️.  This is the closest report I have heard of initial issues similar to mine! Mama’s don’t have time to be sick and definitely not chronically so I admire you as well. My kids and husband certainly keep me going, in good spirits, and looking for the bright side. I recently began a new journal for my journey after my take down surgery. Bentyl, hyoscyamine, and zofran keep me functioning to at least still work full time and be mama/wife. I do spend far more time in the restroom and laying in bed than I’d like. It is reassuring to hear positive responses about going the permanent ileostomy route. Only other ostomates would understand actually wanting an ostomy to have better quality of life!


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SqueakyandLiza
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April 8, 2020 1:23 am  

Hi MsRiss,

Holy moly!!  You have been through so much. I am so sorry that they are having so much trouble figuring out how to fix everything for you. 

In the beginning I thought my ileostomy being permanent would be the end of the world. Now, after almost 2 years, it seems likely that it will be permanent, and I think I am okay with that. 

I wish you all the best! 


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VeganOstomy
(@veganostomy)
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April 8, 2020 10:54 am  

@msriss

I'm really glad to hear that your healthcare team sounds like the best available, and I'm glad that you have the support of your husband through this. 

I hope that others who read your story may be able to share one that's similar to yours as I'd like you to feel like you aren't the only one going through all that. 

Please keep us updated and feel free to ask any other questions you might have. 


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LLNorth
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April 8, 2020 1:09 pm  

Msriss, welcome. My situation is not like yours (goodness, what a ride you have been on) but I have had hernias, and a rectocele. Two years ago I was diagnosed with cancer which resulted in a colostomy, and I am thankful for it - the stoma has worked well for me. I hope things go great for you. LL


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LK
 LK
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April 12, 2020 10:42 am  

MsRiss...Thankyou...I  think.....lol! I  went way back,  many years,  and am wondering why I only remembered this till now which is what kept busy and  searching my journals.  Documented, and for my 62 year young post concussive brain, I needed    the help of them to recall that it was *not just my intestine that caused issues. I too was told I had a longer intestinal tract then most! My surgeon had said it after before the 1st bowel surgery.  There  were issues with other parts of my organs that left me with one  question in particular a few times & from other specialists too! Their main question was....by chance, "Did I know if I WAS supposed to be a TWIN???"  An emergency hysterectomy at age 28 was the first time I was asked that question!!! My hubby and I  certainly wanted our own  baseball team of children,  but after many miscarriages and one last particularly horrid event that took me straight into my 2nd emergency surgery,  more babies was well out of the question.  

You really got me thinking about my guts after reading your story. It was a tad familiar!   In hindsight, I can see the wisdom in surgeons choices,  but it took your story to get me  there.   My history was complicated,  but I always recovered well from surgery.

Interesting issues like Hemochromotosis, a very high life threatening iron count,  usually found to be a disorder in heavy meat eaters and mostly men, was a diagnoses I recalled,  but to read again,  many of my 57 male Cousins, Uncles, one Aunt,  my own Mom,  and I, all had it, were just one complication after another in my life. I was the 1st diagnosed. My folks rarely spoke of health issues, then on hearing  my Mom complain one day, I asked to see her tummy! On lifting her shirt, I saw  she was a bronze as I had been! I wrote out that million dollar word, told her to take it to her doctor, she was positive for it too!  She wrote her family and the ones with symptoms  were tested and positive for the disorder. I wonder where my iron was when I've been  anemic for 2 years,  prompting 3 iron infusions and two blood transfusions in one week! ? Interesting stuff I relearned about me, one story I won't share publicly because the story is a tad embarrassing to me. However, I will pm you with it. lol! Old fashioned thinking I suppose. lol!  At any rate I may ask...are we related? lol!! 

I truly hope you can eventually see the light at the end of your tunnel! I'm so  pleased you have a specialist you trust and  is up on things. Remember, Unless someone is walking your mile, most do not understand a first surgery let alone another. Knowing the RISK is vital, preparing for the WORST,  but living the BEST is what's important. Sometimes this is done in difficult situations too.  Quality of life is hugely important in my books and a supportive yet cautious spouse!  Be well! 

Linda

 

 


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