Problems One Year Post Total Colectomy

[@katifiawoods8754]

I have Crohn’s disease and have been dealing with it for 21 years now and I have my days when I question “why me?” And things like that but I get through it. I have had 5 colectomies of my intestines close to my ileum. I would not wish this on anyone. I am also a Pyshc major halfway through my masters. I love that you made these videos for newly diagnosed people. Keep your amazing spirit. I was in the military when diagnosed and get nothing for it when discharged. Keep your head up and keeps smiling.

[@Ostomystory]

Thank you so much Sara! I love your videos and the sense of humor you approach life with! I found your videos a month before my surgery and they're wonderful!

[@tonilaudermilk5721]

You are brave to share something so personal; BUT you are doing a world of good for those who need answers. A family member is struggling with this new normal and I am hopeful she will watch your videos. She is recently out of the hospital and is home recovering and trying to adjust to her new normal. Thank you

[@TheDogwalker54]

My mother-in-law, who is 88 years old, was just told that she needs a colostomy. She is very reluctant to have the procedure done, but I can imagine that your videos, especially with your cheery personality would give her courage to face the experience. Thank you for sharing!

[@JDvorak2009]

I really admire your frankness. Thanks for being frank! People need that in today's world, I think!

[@paw572007]

Thank you for all of your videos. I have UC. I have had it for 9 years now. You are an encouragement to me. Please keep on being positive. :)

[@SaraRinger]

I know how frustrating it can be too keep fighting and how it feels to never get a break. My first year post colectomy was awful! Keep hanging in there and being the beautiful and brave girl that you are!

[@Nannie331]

Hi laura thank u so much fir sharing your stories wuth us , it really helps me I had surgery 1/14/14" total proctolectomy with illeostomy and im learning alot everyday

[@ashleedewitt5199]

I've also had a total colectomy with the j-pouch. I had to have my rectum removed too due to bad ulcerations. I am now 3 years out and go back to Cleveland Clinic every November for a pouchoscopy. My life is so much better since getting rid of my sick colon!

[@doralee1star229]

Ashlee Mohamoud May I ask which MD did your surgery and where? Looking for a good surgeon as I may need a colectomy as well

[@Ostomystory]

They haven't mentioned that. I think they're just waiting to see what it does in a month or two first! I do have a friend who has endometriosis so I know a tiny bit about it, but hopefully this is just a cyst due to ovulation! Did the PT help a lot? Thank you so much! I may take you up on that! Ohhh! Good luck! Let me know how it goes!

[@DarkWaterfall]

Hey, Laura, so sorry to hear that you are dealing with yet more issues! I actually have something similar going on w/ my pelvic floor muscles. I did the PT for it and it really wasn't as bad as I thought it would be and I had a GREAT therapist. If you have any questions about the PT, feel free to message me. Also, I'm wondering if endometriosis was mentioned re: the cyst as it can be a cause of bleeding cysts or "chocolate" cysts. FYI, I'm meeting with a surgeon on wednesday! So nervous!

[@maryemclea6436]

thanks for all the posts

[@DarkWaterfall]

The PT made a big difference with my pelvic floor being able to relax easier. I was in less and less pain as the PT went on. Sadly, I moved away and had to stop seeing my current therapist (ins. only allows for so many sessions anyway) and I feel some of the tightness returning. I just got a new lumbar-sacral brace that will support my core much better which allows my pelvic floor to relax. If you want to talk more privately about this, I don't mind as it is a really intimate type of PT.

[@Ostomystory]

I had a total colectomy with ileoanal anastamosis with a diverting ileostomy. So in real people speak, I have an ileostomy so my jpouch could heal. my jpouch is there, but isn't hooked up yet and nothing is going through it (except it makes mucus). I have another surgery to get rid of the ileostomy and hook me back up so my jpouch will take over.

[@crohnie99]

Last year I went to Mayo Clinic to find out why I was in so much pain, nausea & vomiting cause Northwestern kept operating but nothing changed? I get to Mayo's & they tell me my Crohn's is in remission, but have 2 huge tumors that had to be removed, couldn't believe it? Ended up getting multiple surgeries, including full hysterectomy! I've actually thought about checking out the Cleveland clinic too? I'm all recovered now & feeling better, but was scared to death, we are braver than we think!

[@styxiv1]

Just one thing. Unless the Doctors told you something different UC cannot develop into Crohns. If you were diagnosed with UC and later with Crohns you always had it and were just misdiagnosed.On that note for some still waiting on surgery for either a Jpouch or Ileo. I think some Docs miss this. There are markers up near the Ileum that need to be tested and I think thats why its misdiagnosed. My GI specializes in Crohns most specifically but of coarse handles UC but really digs into Crohns.

[@mpantig]

Hi, Laura, this is my first comment but I have followed your videos for some time. I'm sorry to hear about the problems you are encountering. I recently had an illeostomy in October so all these videos are helpful. Anyway, I'm a little confused about the procedures you have had done. You have both an illeostomy and a jpouch? How does that work? Doesn't all your output come out from the the illeostomy? If so, what purpose does the jpouch serve? Well, I hope you feel better soon.

[@MeAndMyStoma]

hey Laura, I had no idea you pulled your drain out! I did the same thing! I would really like to talk to you, our stories are really similar!

[@JDvorak2009]

do you feel full now that your colon is gone or are you always hungry now?

[@DarkWaterfall]

I don't mind discussing it publicly on here either. You already talk about your butt, why not talk about the other holes, too, right? LOL. Also, I have endometriosis & have LOTS of experience when it comes to finding treatments & dealing with symptoms, etc. It can cause a lot of pelvic pain, painful heavy periods, painful sex/intercourse, etc. I would be in the ER every month from it. There are also women w/ severe endo. but are basically asymptomatic, & only find out when trying to conceive.

[@Ostomystory]

message me on youtube or on my facebook page! just the facebook url backslash ostomystory.

[@Clackergille]

heya, i know it's hard but keep it up and gj

[@jessemeade9176]

Can I send you a private email?

[@servantsofthemessiah720]

Y0u are a pretty girl. Maybe u should fear God. The fear of the Lord is the beging of all wisdom. But fools despise knowledge and instruction. The Holy God of Heaven loves u. Sent it Son to die for u . paid for all your sin on the Cross.