Jan 29, 2018 Latest post:
Feb 17, 2021
Jan 28th, 2018 my entire world got turned upside down with an unplanned full colectomy surgery which if some of you don't know full removal of my large intestine and colon and appendix, which requires a colostomy bag for fecal matter to collect in since I am not able to pass waste normally. You see I was diagnosed with Ulcerative Colitis in 2013 finally, the year prior to that I suffered with extreme stomach discomfort and excessive bathroom visits which consisted of mostly blood & mucus matter. I had visited a few Gastrointestinal doctors and was getting no answers and loosing weight rapidly. Not to mention the fatigue was killing me! Found my amazing doc through a previous GI guy who was amazing too but he was just as frustrated as I was before he handed me over to Doctor B. My flairs where pretty regular 3-4 times a year with hospitalizations and lost of steroids! We decided that a biochemical approach might be a better way to handle my UC. I was on Remicaide infusions for 7 months and while it was helping it started to affect my liver so we made the decision to stop treatments and things kinda cleared up on their own. Until October 2017 and I started a pretty steady flair that took me through the holidays into Jan 2018 weak and in a great deal of pain. 2 1/2 weeks in the hospital with mega doses of steroids and pain medication to keep me comfortable. I had a scope done and come to find out the infusions helped the symptoms but not the inflammation of the disease, and at this point it had doubled in size and was starting to run my life, extremely malnourished and dehydrated a loss of 18 lbs in 2 weeks I was in danger . The only alternative was to take it out!
Surgery #2 was on July 18,2018 what was scheduled to be a 4-5 hour surgery ended up being over an 8 hour surgery. Now I know what your thinking WTF, so when your surgeon first decides he doesn’t want to cut your belly all the way open and does the building of the j-pouch all laparoscopic for less invasive approach you have love the man, but to make you love him even more he build the pouch and was not satisfied with the position or capacity and he knew it would cause major issues in healing and life. Undoes the entire thing and starts all over for a better healing process and later better functionality. How amazing is that! I wasn’t so happy and loving when I finally came out of anesthesia swollen black and blue but post operation 4 weeks out now and I survived. The new stoma is positioned higher in the bowel and pointed down so life is a big adjustment again and I am not able to change my appliance alone either. My husband is the most empathetic, compassionate, selfless person and I am truly blessed to have him by my side. We have a few months to heal and see when we can schedule the final surgery.
Surgery #3 11/28/18 well not what I expected at all! Teaching yourself how to go potty again, rebuilding your muscles in your bottom. Easier said than done right now. Developing a UTI and wow how crazy that makes your blood cell count off. Sustained fluids on my own last night. Doing the happy dance. Slow and steady daily shuffles down the halls will get me in my home. Lots of bathroom visits and some assistance from adult incontinence panties and life is moving onward and upward. Post op 4 weeks now and I am happy to say only a few accidents and getting into a life routine. Little trouble with hydration balance but we are working on that. Food well extremely slow process. Got 2 👍🏻👍🏻 up from Dr. Shawki yesterday in pouch functionality and made me cry with happiness. I don’t have to see him for a year unless an issue arises. This has been the craziest year with and extreme amount of tears and pain but also happy tears and complete happiness. 💜
Post surgery almost 6 months after my closure Easter morning 2019 I came home from church and was feeling some discomfort in my upper belly and all of sudden I had an extremely large pain ,I doubled over and couldn’t stand up straight and become severely nauseous. I found myself looking for my Zolfran and wanted to just lay in my bed. I had lived my days from their on out vomiting daily and extreme bathroom visits. Well that was the beginning of a new way of life for me. After having a pouchoscopy I was given the news that my j pouch was prolapsed and floppy. They decided the best form of treatment would be to have a “banding procedure,” and they go into your pouch and basically give it a small face lift by banding tissue in a really small rubber band and it scuffs off the extra tissue and helps the pouch become taunt again. Well I have had two procedures done now and I am feeling better but still having trouble so I was suggested to consult with a GI dietician who has helped me tremendously. We are below FODMAP now, all proteins,hand full of vegetables, and handful of fruits, gluten free, limited dairy treating like IBS for my j pouch. Ugg the anxiety that this brings is horrible, shopping for the right foods, eating out is very difficult also, so not only am I below FODMAP but I am allergic to citrus which eliminates lemons, limes, tomatoes, oranges, grapefruit, pineapple. I feel like all I eat is chicken, chicken, chicken!