I haven't been on here for a while as have been really down and not coping very well. I went to see the gastro specialist last month and he was really helpful and has always been great. He is referring me to a psychologist so I can talk things through with a professional. I have now been j tube fed for 4 years and I am still not retaining any oral intake. My g tube is simply for venting or decompression if I feel sick. My weight is maintained because of the nutrition which is great. He also has to refer me back to the endometriosis and PCOS specialist as I have been having severe lower abdomen pain. I took my sister along this last time I saw the gastro specialist and am going to take her along to my next appointment for my PCOS specialist as the last time I saw him he was arrogant and rude and I cried after I saw him because the whole appointment was so aweful. I have been so exhausted and was so down that I actually contemplated doing something to myself which I would not have normally thought about as I do not normally let things get me down. The Sunday after I had gotten really down I went to church and had a whole group of people pray for me up the front of church. Knowing that you have so much support is so important and made me feel a whole lot better. I also have some really good friends at church that run a health shop and have been providing me with really expensive probiotics free of charge which is such a help.
My sister (who is a physio) has just heard that one of the hospitals here is doing botox for gastroparesis and it is successful in some patients. Has anyone had botox for gastroparesis and found it helped? This other hospital also works as a team so the gastro specialist works with the psychologist who works with the dietician and the district nurse so she is trying to get me into the trial. I am seeing the dietician in the next week so am going to ask her about it.
Today I got an email from someone we bought something online from and he came to our house yesterday. He said he was "sorry to hear about my illness". I got a bit upset cause I actually don't want to be the person people feel sorry for but I am at the moment. I am always positive and I think sometimes I don't let people know how I feel and how much it is affecting me because I do not want pity. I am so lucky to have amazing friends who see through my stubborness and even just a hug on a bad day is great. My husband has also been amazing and we are celebrating our 10 year wedding anniversary at the end of this year. I just celebrated my 36th birthday and got showered with amazing gifts from family and friends.
Anyway, thanks so much for letting me vent. Hope you all have amazing people in your life to support you as well.