I hope you are all enjoying the weekend so far! I have been reading and keeping up to date on everyone, it's just with these classes, by the time I get my work done and have the chance to post here, I can't keep my eyes open. The pain hasn't been very good lately, and that "worn out" look is really showing on my face.
I am SO EXCITED for Lizzie to be coming for a visit!!!! I'm sure it will feel like summer to her, but 80 degrees also means that all the rose bushes, azaleas, and crape myrtles are still blooming! Having a super, super close friend physically there who completely understands, and has lived, this disease process makes all the difference in the world. My family knows I am sick, but as far grasping the pain (physical and emotional)...that is something they cannot do, and most of my friends have pulled away because I don't fit into their world anymore. I am so unbelievably thankful for Lizzie and for all of you. I thought a total colectomy was all that could be done for me...until I met all of you! Please, please, please pray tons for Lizzie's upcoming surgery. It is going to be another major surgery...and I am so worried about her. Pray for nothing less than perfection, and that this seventh surgery will be the last one and the one that gives her the life back that she so deserves!
Sarah, as always, I am praying for you and that the doctors will take initiative, that their curiosity would be sparked, and that they can quickly find what is wrong and what needs to be done to give you your life. I know the feeling of being trapped-- trapped inside a body that doesn't function correctly, trapped by a lack of progress in diagnosis and treatment, but every single day we just have to get up and continue to fight. Whenever you feel like you can't go on, just remember all the support you have here. While we are scattered all over the world, not a single one of us is ever alone. I hope you do come to the US someday, even if it is to see more doctors (the doctors at Mayo have been wonderful to me, and they hate to see young people suffer), and I will gladly meet you at the airport!! Would a contrast study of the veins in question be of any benefit? Could that possibly show the doctors anything?
Thank you so much for sending that article. It really has helped a lot. I talked with Mayo last week, and they confirmed that they had received all of my current test results as well as the letter written by my GI doctor here in Texas. Dr. Gupta (my Texas GI) really is a wonderful man, and he wrote a very detailed letter to Dr. Camilleri (Mayo) asking that he see me again. His letter also asked that I be considered for an end ileostomy (that made my day!), so when I see Dr. Camilleri again, he will already know that I want to discuss that option. I should be hearing back from Mayo this week to discuss appointment availability. I hope they can get me in soon because the rectal spasms continue to worsen, and I'm just ready for surgery. I hope I will not have to fight my parents to get it. I have been trying to deal with this since my total colectomy, which was three years ago.
Gilda, I don't have much of an appetite either, but I don't have a choice when it comes to eating. I have found that smoothies go down pretty well (not always great, but better than most things) and they taste so good. My body doesn't tolerate any dairy, so I use hemp protein powder. I know that sounds really strange, but it has a nutty taste that is really yummy when there is banana in the smoothie too. There are egg white protein powders, soy, rice, whey, pea...so you can use whatever works for you. However, with your diarrhea problem, you might want to make sure the protein isn't sweetened with any sugar alcohols like xylitol because those can cause diarrhea. You can mix whatever you like...after surgery I blended a can of peaches in 100% juice, a frozen banana, and protein powder. Now my usual is Bolthouse Berry Boost, frozen banana, maybe a few frozen cherries, and protein. You can add almond or peanut butter to them as well or flax oil for some Omega-3.
Rosemary, I hope you have a wonderful time on your cruise to Africa. Take lots of pictures and post them to an online album when you get home! It's not too difficult, and I can tell you how to do it if you want.
Hodaya, I am so happy for you and your new job! You deserve it!
Marisa, I cannot image what you are going through. While justice was not done here on earth, that man will be held accountable by someone infinitely more powerful than a judge in a courtroom. I know that doesn't take your pain away-- I know nothing can. John 16:33 says, "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."
Well team, I know they say there is strength in numbers, but I would like to add to that and suggest that there is sanity and solace in numbers as well. Much love and many prayers to you all!
Life-long GI problems.
- 2004: Motility problems completely took over my life (I was 18). Tons of doctors later...
- July 2007: Diagnosed with colonic inertia, small bowel dysmotility, delayed gastric emptying, rectal dyssynergia at the Mayo Clinic
- November 2007: Total colectomy with ileorectal anastomosis; IV lipids, PICC TPN
- Post-op: Better, initially. Motility slowed again 8 months after surgery. I currently have chronic debilitating pain due to a small bowel dysmotility.
- September 2008: Barium study shows dilated small bowel loops (4.9cm), indicative of partial obstructions
- May 2010: Doctors suspect worsening rectal dysmotility; manometry inconclusive; rectal biopsies normal
- June 2010: Biofeedback (entire pelvic floor in full spasm...PT has quite the project on her hands!)
Currently trying to figure out what my physical abilities will allow me to do career-wise. Psalm 73:26 - My flesh and my heart may fail, but God is the strength of my heart and my portion forever.