Meet & talk to fellow OstoMates Support | Friendship | Relationships 22,5K + members


I am a middle aged Wife/Mother/Grandmother who has suffered with autoimmune syndromes which have compromised my gastrointestinal tract which my surgeon believes suffers from dismotility from my lips to my anus. It has been a long road with much suffering and pain. After the birth of my daughter over 26 years ago I was diagnosed with gastroenteritis over a period of 2 years with no explination. This began a long history of very progressive forms of chronic fatigue and severe fibromyalgia that compromised my intestines that was unable to be treated because there was no treatment. After years of laxatives and colon preps, not because of colonoscopies, they were used to evacuate my bowels. Because of my autoimmunity problems, I underwent rigorous testing multiple times as I was under 35 years. I was blessed with an opportunity to work for a GI practice that changed my circumstances. In truth, it was my honor to be a part of a caring team and because of my diseases I was able to help others, who unlike myself found some relief from my knowledge not just from my little medical knowledge as a mstaff working in authorization procedures and tests. It was because I was able to relate to them on a personal level. Forgive the length of this intro but much is involved. I knew very early on because of my inertia the only recourse would be colostomy or ileostomy. Beginning 2012 I had the first of four colon surgeries. However my surgeon chose a route he thought would be less invasive, a procedure that was used to help children w/ spinobifida to control bowel movements. The procedure was considered experimental as it had not been used for my diagnosis. The surgery did not even really have a name. I called it a cecostomy. My appendix was used for a c-clap w/catheter to create surgical opening. After being unable to still empty my colon with over 1500 MLS bid with rectal enemas which required up to 8hrs to evacuate with rectal stimulation by digital massage because I still could not void. At that time, my physician and I knew it was time to pursue disability, due to the nature of my diseases I could get no disability coverage, even from Aflec. So I began the long battle of fighting the US Social Security for payment beginning 2012, the date of my first surgery. In 2014, my 2nd surgery a total colectomy w/ ileorectal anastomosis was completed, again with no success. I had complications with procedure and had to have blood transfusion and was in and out of hospital for nearly a month because I had developed an infection in both sites the removed cecostomy site and the anastomosis. For nearly a year the doctors remained hopeful for a good prognosis. Sadly, a permanent loop ileostomy was completed which required flushing with water every bowel movement. After only 3 months,due to high output and skin infections and exhaustion, within 1 month yet another surgery. This time was it, ileostomy w/hartmann's pouch 12/07/15. Because of my GI compromise and inertia issues, my hubby and I try to find humor, we have named my stoma Oscar. I continue to suffer from no output to high output from Oscar. Some days I can take no liquid to prevent blockage because of inertia. Other days it's medication and drinking an insane amount of liquid due to outputting over 1500 MLS or more a day. Within a mth I developed sepsis with no apparent cause. Still I knew for me it was a gift because I was finally able to not stay completely confined to the house. However, I do have a hernia they are monitoring and due to not being able to evacuate mucus from hartmann's pouch without manual syringe and digital manipulation. There will probably be more surgeries in my future and more medication but if my problems can be helpful for others, it is a journey worth taking. There have been many low moments of self putty and many tears. Due to metabolic issues, I have been diagnosed with diabetes, triglyceride and electrolyte imbalances. Because of my GI problems, I can take very little DM medications. To the Dr's I am a case, they are puzzled by diseases. What gets me through, at least, majority of the time, is the fact that I know the Great Physician holds me in the palm of His hands and He has a plan. Even when I am at my low points and just want to end it all because of the burden I am attached with, there is a reason for it all and I pray and am thankful if this helps any who have to begin their own journey. I am always here as it is still my fate and can no longer be a part of the working society. It hurts more than you know. I hope others respond to this story. Sorry for the length of this testiment, but I'm a "case" and it was hard to simplify. However, I am now approved by government for disability with a back date of March 2014, the 2012 date did not meet criteria even with my doctors statements. Keep fighting and remain strong. Thank you and be blessed
Other Members
Virginia, United States
m, 70
Michigan, United States
f, 32
Crohnie who recently had my Stoma surgery. It's a very new world I'm t...
f, 41
Looking for support, friends, and who knows maybe a relationship with...
Idaho, United States
m, 41
I have little doubt that I can manage to approach a relationship now ...
British Columbia, Canada
Currently online: 20    
4 members & 16 visitors