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Subtotal Colectomy scheduled for Colonic Inertia

colonic inertia constipation diarrhea abdominal pain abdominal bloating rectal prolapse resection rectopexy subtotal colectomy

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#221 Miss Beany

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Posted 07 August 2014 - 10:34 PM

Hi Ladies!

 

Kym - good luck tomorrow!  Please let me know how it goes!

 

Annie - thank you so much for all of the ideas and resources, as usual!  You are truly amazing!  I have been using hydrocortisone rectal suppositories off and on, especially when i have a ton of rectal pain or sensitivity.  I will definitely ask my surgeon on Wednesday about the other ones.  My physical therapist really doesn't do a whole lot with the biofeedback, just basically uses it to get a measurement of how i am doing with incontinence.  I saw her this past Tuesday and she felt I was doing much better in that area; however, she said it is still a huge issue that i strain all the time, and that is something my doctors need to work on with me.  

 

I did see the gyn last Wednesday...and that was a totally disheartening appointment.  I have only seen her once before as I had to switch doctors after my original gyn lost her practice.  They did an internal ultrasound, which didn't show much except that my bowel was right on top of my ovaries.  Don't know if that matters or not.  She then addressed the issue of rectal and vaginal bleeding simultaneously, and said she should really take a biopsy of my uterian wall...but that i'm too much of a high risk and shouldn't undergo anymore surgery.  She also said that i look healthy and am beautiful so i should just forget about it, and that i wouldn't want to go through it.  I also told her about the pressure I have in my rectum and vaginal when i strain, and she said again that i should just let it go unless i am feeling really sick because i won't like the treatment, and saying again i'm too high risk.  She told me i was welcome to get a second opinion by one of her colleagues, but that i should just let it go...  While I would love to ignore this all and move on with my life, i fear developing the prolapse again, not to mention, this was not supposed to happen after my colectomy.  I called my GI doctor to let him know what she said and he was appalled and said he felt like she just didn't want to deal with me.  He strongly urged me to get a 2nd opinion and said I could wait and talk to my surgeon about it at my appointment, but that he thinks it's important to get to the bottom of it because i am such a complicated case.  So I am going to talk to my surgeon about this all on Wednesday and see what he suggests and if he has any recommendations for who to go to.  I also told my PT therapist and she said the same thing as my GI doctor and that hopefully my surgeon will have some suggestion to make with doctors he knows and who are specialized in this type of surgery...  Realistically, I don't know what the issue is or what treatment might entail.  I'm trying not to think of it right now, but do want this to be resolved. I just don't know if it is anything that can be fixed.

 

Hope you are all doing well!  Cannot believe it is already August!

 

Love and hugs

Gina



#222 ksl2017

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Posted 09 August 2014 - 01:46 AM

Girls,

 

(Gina I sent this message to your inbox too as I have your personal email, but i will post it too as I have sent this email to a ton of friends and family who have been following my medical journey.)

 

Friends and family,

Wow, so recently, Thursday August 7th, I traveled back to Cleveland Clinic and finally met with Dr. Kareem (my new intestinal rehabilitation/transplant surgeon). He is truly amazing and has a wonderful bedside manner to start off with!


After going over all my symptoms with him, my several GI tests, xrays, ER visits, etc. He did not hesitate to see that I was basically right with saying that my digestive tract has lost ability to transit food and fluids....I was officially diagnosed with "generalized intestinal dysmotility." It was amazing just to hear him finally say it and to get the diagnosis as I have been dealing with this for about 1.5 years now with previous doctors telling me it was all in my head or that I had an eating disorder and so just eat more.....Dr. Kareem understood entirely how I was feeling and said it wasn't his "first rodeo" with patients who have had this chronic intestinal pseudo obstruction symptoms and dysmotility.....to make a long story short, he understood that the symptoms were consuming any quality of life I have had and hope to have in the future.


Now for my plan of action: I will be trying 2 motility medications for 2 weeks to see if they make any drastic changes for me.....and if not, I will have the option of having the rest of my small intestines removed to relieve my body from the constant pain of blockages, constipation, pain, laxative abuse, malnutrition, etc.....in which they will then begin TPN nutrition.


He said that this is the process for my condition.....I have to attempt TPN nutrition and have complications with TPN before they consider me for an intestinal transplant.....it does suck that this is the process, but I know its for the best if I hope to have a better quality of life in the future. He actually said, quote "we will take care of you....you are in the right hospital now so do not worry".....I literally started crying right after he said that! I have never had a doctor take me seriously and really see me as a suffering individual although I may look okay on the outside, my insides are always suffering and he totally understood me.....that was an amazing feeling. He also said to my parents (who were with me in the room) that if this had happened to his daughter, he would recommend this exact treatment and plan of action.


I am very happy with the trip and the future plan. I know its going to be a journey from here on out, but atleast I know that I have an official diagnosis now and plan of care. That is the best feeling ever. He also said that there isn't any reason I still cannot pursue my goals of becoming a Pharmacist and that I should live my life to the fullest since I've had to put things on hold for so long. He said TPN will give me relief from the struggles right now and allow me to sustain nutrition for as long as it can. I just emailed my Pharmacy program director about all of this too (he has been so understanding of my medical condition and also so supportive and I know the school will work with me to help me pursue my goals....heck I'm sure the college would like to do a segment on me too with the program since my condition is so rare and the university is always up for any research that leads to cutting edge technology such as stem cell research for motility disorders).


I am not afraid of the future and I know I have to stay strong and brave for what will come. Quality of life is so important and its an amazing feeling to finally have a doctor who acknowledges this!


I look forward to hearing back from you and just wanted to update anyone who I have ever contacted and kept in touch with about my medical journey!


P.S. my friends mother said she would be contacting her contact with the Dr. Oz show and nagging them until they get back to her so she can see about getting the story about intestinal transplants and different rare disorders to have a segment on the show! Wouldn't that be great? All good things to look forward to :)


My family and i just got home from Cleveland (12 hour vehicle travel!) but I wanted to email everyone right away because I was so anxious to let you all know the news. I will be sleeping in tomorrow because i am exhausted....talk to you all soon!


Hugs,
Kymberly
 


#223 ksl2017

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Posted 09 August 2014 - 01:51 AM

Gina,

 

I would highly recommend you seek a second opinion! As I have learned, you cannot give up hope when one doctor closes the door on you and tells you to simply live with the condition.....if it is affecting your quality of life, then it matters! I believe everyone deserves a quality of life....and especially you because you are so young still!  I feel blessed to have found my care team at Cleveland Clinic and as I said, it took me a while to finally get doctors to believe in my symptoms and my condition, but it was all worth the battle to finally have an official diagnosis and treatment plan.  I wish you the best of luck and I'll be keeping in touch with my new treatments to come!

 

Annie, bless you for all your support, kindness, words of wisdom, etc.....where would I be if it weren't for all your recommendations and simply just your company and having someone to talk to!...that goes for both of you! I really have enjoyed our blog as a comforting place to seek advice, vent, gain recommendations from, etc.  It really has meant a lot to me and has helped me emotionally to deal with my condition.  I look forward to our continued future contact.

 

 

Hugs!!

K



#224 annie7

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Posted 09 August 2014 - 07:00 AM

Kym---i am so very glad you have such a truly compassionate, knowledgeable  and caring surgeon as Dr Kareem!  honestly, there were tears in my eyes when i read your post. Finally you have a doc and a team of medical professionals who truly understand, care and have a sound treatment plan for you!  really--you have been through so very much--such a long long road---especially for one who is so young. you are so brave, strong, intelligent and truly a fighter--never giving up.  you are  an inspiration...

 

and fingers crossed the motility meds will work but it is so good to know that if they don't, there is a backup plan for you and your surgeon will not let you down.  and yes--like he said--you will be able to get your life back and achieve all your goals --what a relief it must be to hear this!!  you've had to put your life on hold for so long--now you finally have a plan of action and can get on with things!

 

thanks so much for the update and for keeping us all informed.  and that's so exciting about Dr Oz and also your university....

 

Gina--omg--so sorry for all your continued problems and for the totally uncaring and dismissive way your gyn treated you---telling you just to forget about it!!! i think not!. how would she like to have to struggle with all your problems on a continual daily basis.

 

 and  her saying you "look healthy and beautiful"---and i'm sure that's true BUT as a doctor she of all people should know that what looks good on the outside does NOT mean it feels good on the inside---really!  doesn't she know that when we're sick like this we make a real effort to LOOK good---despite how wretched we feel.  oh i could go an and on about that one--lol...when people tell me "well, you don't LOOK sick"  i just smile, look them in the eyes and say " thanks. i work hard at that".

 

yes, do get a 2nd opinion like your PT, surgeon and Kym said!    and hopefully you can find a much better gyn too--one who cares, understands and is proactive.

 

BTW--how is it going with the 5K you were planning to do?  i think it is so wonderful you are doing this. a while ago i mentioned you and your 5K on a thread on the general discussion board when someone ask about walkatons etc for IBS and digestive problems. it's so impressive what you are doing to help:

 

        http://www.ibsgroup....to-raise-money/

 

both of you are such brave, courageous, intelligent and inspirational young women!  you have both been through so very much yet you never give up. keeping both of you in my prayers and sending lots of hugs and positive healing thoughts your way  smile.png   annie xx


these are just my own thoughts. for expert medical advice please contact a health care professional.


#225 Miss Beany

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Posted 15 September 2014 - 03:52 PM

Hi Everyone!

 

I just wanted to take a few minutes and give everyone an update since it has been some time since my last post.  Kymberly and I have been in touch, so she definitely knows more of what has been going on.

 

I saw my surgeon back in August and he said he wanted to do another flex sigmoidscopy to take a look inside and make sure internally I was okay, since I still have the rectal and vaginal bleeding sporadically.  He also said he wanted to inject hemrrhoids if he found them when inside.  I initially scheduled that to do in the office...then started thinking more about it and how uncomfortable I have been and how uncomfortable I was before when I had it done.  I called the office back and asked if it was possible to do this all when I was not awake or aware...and he immediately said he would do it under general anesthesia without an issue.  So that is being done this week on Thursday, September 18 at Bryn Mawr Hospital.  Hopefully that will shed some light on what has been going on.  

 

Additionally, he referred me to a gyn specialist that he is particularly buddy-buddy with.  I saw her the last week of August.  She listened to my symptoms and wanted to try switching me off the birth control pill and onto a patch as a way of seeing if perhaps my body just isn't absorbing the pill w/o my having a colon.  I start the patch in 2 days.  We will see what happens then throughout this month and the next; if the bleeding persists, then we will go from there.  Also upon examination and telling her of my rectal symptoms and pressure and pain in teh rectum and vagina when I strain to go to the bathroom, she found a rectocele.  She said I am high risk to treat this and while she does treat these surgically, she feels I am best to go to a urogynecologist surgeon as I will likely need mesh to fix this in a way that reduces the likelihood of recurrence.  She offered me a referral and I go to him next Tuesday, August 23.  

 

Initially I felt pretty defeated after hearing about the rectocele and began to feel like "will this ever end"?  Then I remembered my pledge to NEVER GIVE UP and that I would get through this too if another surgery was necessary.  I don't like what I am reading about the surgical approaches with this, particularly that they can go through the vagina for repair...but i am sure that is something i can talk to my surgeon about when I meet with him.  For all I know he might refuse to treat me or say it's not a big deal, even though I would rather have this fixed now before it gets any worse.  What are others thoughts on this?

 

I have had good and bad days, but more recently over the last few weeks have developed some stabbing sharp pain in my upper right abdomen.  I saw my GI doctor this past week and told him about it, and he is sending me for an upper abdominal  ultrasound tomorrow...can't eat or drink anything at all after midnight.  He suspects I may have gall stones or an inflamed gallbladder...but we will see.  It has been happening on and off for a few weeks, can go from lasting a few minutes to hours to days.  I notice it happening more after eating or eating bad stuff (as rare as I do).  I also vaguely remember an ER doctor mentioning I would need to keep an eye on my gall bladder 5 years ago when I had kidney stones...who knows.  I know Kym has been through it and definitely knows how it feels.  

 

Finally, this past weekend I did my 5k for the UNDY in Philadelphia for the Colon Cancer Alliance.  I had gotten a call from the directors last week asking me to be their survivor speaker...so I did the opening speech before the race began on Saturday.  I ended up finishing in 33:04 and placed 2nd in female survivors.  It was such an amazing and emotional day...I encourage anyone who suffers from colon disease or cancer to get involved in something like this - you are surrounded by people who have been down the road and know what you are going through...who are there to support you and show you that you are not alone.  I am going to attempt to try to add the video of my speech to this post, but if not, will work on getting a link to it as I really feel it may be helpful for others to hear.  

 

As always, the road ahead may be tough, but we are strong and we will survive and get through these challenges.

 

Love and hugs,

Gina



#226 Miss Beany

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Posted 15 September 2014 - 03:57 PM

Here is the link to my facebook profile for my survivor speech presented in Philadelphia at the UNDY 5k Run/Walk on Saturday, September 13, 2014:

https://www.facebook...&type=2



#227 annie7

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Posted 15 September 2014 - 04:40 PM

Gina--so sorry for all your problems. it is hard, isn't it, when we keep having pain and more pain and the docs keep finding more and more problems-- more surgeries...so sorry.. it's very hard---quite a challenge...we just take it one day at a time and like we always say here on this thread never ever ever give up.

i stopped thinking "will this ever end" quite a long time ago...makes things easier that way.

we're strong and we're fighters and we do go on and live our lives as best we can despite it all.

i have a rectocele. it's medium size and my c/r surgeon said it didn't need surgery. it really doesn't bother me. i keep my stools loose with all the laxatives i take so maybe that's why i don't have trouble with it...don't know.

do all the research you can on rectoceles and surgery and talk to your surgeon. you could even get a second opinion if you want. it's good to be able to make an informed decision.

thanks for the link to your speech, what a very moving and amazing speech! you are truly and inspiration!

wishing you all the best on everything. and keeping you in my prayers and sending lots of positive healing thoughts your way, annie

these are just my own thoughts. for expert medical advice please contact a health care professional.


#228 ksl2017

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Posted 22 September 2014 - 11:30 PM

Sorry I haven't responded in a while, I kind of forgot about this blog when I started my full time classes!  Gina and I are on a texting basis these days now with updates and advice and news about our conditions.  I know that's really been helpful for me :)  

 

Annie-I do want to say too when you mention your rectocele and that your c/r surgeon says its medium and not necessary for surgery you may want to seek a different opinion because Gina did mention to me that she was recently told that hers was "minor and surgery was uneccessary" only to find out later that it was definitely more than just a minor problem and could highly be contributing to her issues.

 

We both discussed the importance of a better quality of life.  I found physicians who are willing to offer me a better quality of life and although some of the options may seem radical to some physicians who are not familiar with it or have very much knowledge of it, that doesn't mean its not a good option.  Sometimes you just have to keep searching for that one doctor who is going to get to the bottom of the case and be an advocate for your quality of life.

 

So to update, I am going back to Cleveland October 3 to discuss moving forward with plans for my generalized intestinal dysmotility diagnosis, asking questions, signing a surgery contract, and scheduling the surgery for mid or late October.  I'll be getting the majority of the rest of my small bowel removed, having some retained with a jejunostomy, and supplemental TPN.  This is to improve the quality of my life and to not have to take horrendous amounts of laxatives to clean my bowels.  If I were much older, I probably wouldn't consider the surgery & I would just accept my state, but I'm only 23 and I cannot foresee myself being able to manage this for the rest of my life when I already struggle as it is right now.  I barely have energy to leave my house most days and not being able to get out and exercise and be in class, etc. has really been taking a toll on me these past 2 years.  I know in my heart this is the best decision as I trust my care team immensely and I'm willing to take this chance for a better quality of life.  Somewhere down the road I'll likely have to have a transplant as my surgeon said TPN isn't a life-long solution, but nothing major right now.

 

Hope all is well!

K



#229 annie7

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Posted 23 September 2014 - 04:46 AM

Kym--thanks for the update.

sounds like your team of docs have put together a good treatment plan for you. you are in good hands, with a
terrific team of docs to help you through it all.

you are very brave and strong--you are a fighter. and with this surgery , as you say, you'll be able to move on to a better quality of life.

and quality of life is so important no matter how young--or how old--we are. that's why--regardless of age--we all keep fighting.

wishing you all the best and sending lots of hugs and prayers and positive healing thoughts, annie

these are just my own thoughts. for expert medical advice please contact a health care professional.


#230 Miss Beany

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Posted 23 October 2014 - 07:04 AM

Hi Everyone!

Once again I know it's been some time since my last reply, but I'm doing my best to keep myself together with my almost full time internship, 10 hour weekly commute, class, work, and still struggling with and fighting with my body each day.

I did meet with the urogynecologist surgeon at Riddle hospital back on September 23. He was a complete and pompous ass hole who had the gall to say to me that I do not meet HIS textbook definition of someone who could have possibly had rectal prolapse for 10 years yet at all and that all imaging and defocograms were misinterpreted, that I probably never had colonic inertia that multiple tests suggested and showed, and that again I couldn't possibly have a rectocele because I did not have children or meet HIS textbook definition that he wrote. He told me "your doctors obviously didn't know what they were talking about. You probably didn't need any of your surgeries." What an ass. I was forewarned by my gyn and surgeon that this guy was full of himself and pompous; but I decodes it was worth a shot. Total waste of my time except to find out I wouldn't trust a word out of his mouth. My surgeon referred me to another urogynecologist put of the University of Pennsylvania that I met with October 1 and meet again with next month. My surgeon alap referred me to another colorectal-surgery specialist out of the university of penn who specializes in PFD. Unfortunately, given I already had a colorectal-surgery doctor from upenn, they would not let me schedule with a different doctor. The urogynecologist at upenn could not really treat me or determine my rectocele significance when I saw her because I could not strain d/t pain from just getting out of the hospital. My old upenn surgeon also confirmed the rectocele but said he was unable to treat me as he didn't specialize in this.

In terms of my gallbladder ultrasound--my gallbladder was packed full of stones with a slight thickened wall. I schedules surgery to remove it for October 14...on September 27, I was admitted to the hospital for extreme pain and nausea. Another ultrasound showed my gallbladder wall had significantly thickened and was showing early signs of infection. So I had emergency surgery on September 29. I was in the hospital for 5 days for this whole thing. My bladder shut down and I was pretty sick. Glad it's over now, but it definitely wasn't fun!

At this point, I'm back to my usual straining, only it's getting worse. My GI doctor started me back on linzess 290mg to see if that would help ease the straining. It has not. I take it as prescribed, used to have a feeling of urgency shortly after I took it - now nothing. I am having increasing trouble evacuating or evacuating completely. It's like my rectum blocks stuff from exiting. (The next stuff will sound graphic but I need advice). I spend hours in the bathroom during the course of a day. I know I have to go to the bathroom because my stomach is swollen and I feel ungodly uncomfortable, so I strain or push on my stomach and abdomen and start the process. Somewhat formed hard stool or food particle comes out. Then it's like everything inside of me goes into knots. I'll suck air into my vagina, trying to expel something, and liquid will come out of my rectum and anus. If I push on my stomach during this, a food particle or something solid may come out. If I continue to suck in as much air as possible, liquid will leak out, as if it was caught in a bubble and I penetrated it. Some solid or food particle may also come. If I suck air in and quickly expel, sometimes another blob of liquid or hard stool or particle may come out (very small piece). By the end of this, I'm exhausted, heart pounding, and still do not feel empty. I'll go away from the bathroom, only to run back in minutes to half hour later. At the very end of the day, usually over 12 hours or more after I take linzess, I'll have a hard stool come out of me that I need to strain to get out.

I notified Mt GI doctor of this all last week, in addition to feeling as of my prolapse is coming back or is back already. Multiple times I have felt something small protrude from my rectum, usually when there is blood and mucus upon wiping. I also have a heavy and pulling feeling every time I go. I literally feel something drop down out of my vvagina and have in fact felt it with my own hand - tissue, a bulge -aka I'm guessing my rectocele. I have vaginal and rectal discomfort all of the time. I'm exhausted and tired of this all and at the end of my rope. This is what my PT said would likely happen and that unfortunately PT wouldn't solve because it's been going on for years. My diet is already whag they consider ideal. I'm already on the linzess paired with miralax, just like I was BEFORE I had my colon removed. While things move more freely and I don't have a ton of waste backed up, this process can't be good, normal, and likely will only make my condition worse. This is no way to live. If I could stay inside everyday and crawl up in a ball on the floor...I would.

Any advice you may have about how to get it across to my new urogynecologist and surgeon that I need the prolapse repaired if it's back (be it internal or mucosal) and that regardless of the rectocele size, it is causing blockage and obstructed defecation. I'm pretty devastated and embarrassEd and feeling like there is no hope and that this is what I will always have to do...which makes me never want to date or be around anyone.

I'm sorry for being not so positive avout this all, but I'm tired. Kym and Anni I know you understand. ..Always appreciate your feedback.

How are you Anni? Kym and I talk daily but I do wonder about you! Kym and I say it often, we will meet some day. It's amazing how sharing common struggles and finding people who REALLY get it is one of the best forms of medicine you can give someone.

Love and hugs always,
Gina





Also tagged with one or more of these keywords: colonic inertia, constipation, diarrhea, abdominal pain, abdominal bloating, rectal prolapse, resection rectopexy, subtotal colectomy


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