New here (my name is Z)

Hi Everyone,

I am new to the group. I was diagnosed in November with severe colitis. I had a c diff infection prior too that put me in the E.R. It was also diagnosed with HPV. I had a condyloma on my anal gland with a papiloma on my groin along with several polyps.

After getting over the C Diff which was no fun at all, I spoke with my GI and he discussed my options with a colon rectal surgeon. They said I should probably get those removed. I agreed. I opted for surgery to remove everything they could. They removed the papiloma and condyloma and whatever polyps they could get to. That was in mid December.

I have been on Lialda since I was diagnosed. I take lomitil for those times when going 30 times a day is just too much. I have been through the gambit with steriods, flowmax (UT issue that was found as well) along with another 12 meds. You all know the routine.

Well, of course the Lialda and meds did not work. They put me on Humira (it should be called Chimera.) I took my second course today. I had the loading dose two weeks ago. It does nothing but nullify my psych meds for anxiety, OCD, insomnia and depression. I am just starving myself now. That seems to be the only relief. I have scoured the net as everyone here has. I am in that acceptance stage that my life is changed. The hard part with acceptance and UC is that there still is no relief. Again, everyone here gets that. I am just starting my journey with this terrible disease, and I surely appreciate everyone here. I have learned so much from the forum.

Currently, I have little faith in Humira as you might have guessed by now. I have lost about 40lbs since mid November. I will probably lose another 40 more. I have started food journals over and over, but I just find that starving myself is really the only relief that I have had with UC. I am scheduling visits with both a nutritionist and psychologist to get a handle on everything. I guess you can say that I feel the mental health aspect to my condition is very important to me. I plan on going to a plant based diet.

When it comes to nutrition, I am now realizing that I have to be more pragmatic. It is just the new normal I guess. I know there are a lot of remission stories here in this forum. There are a lot of great resources too. I look forward to being part of the community. I wish everyone here a thought of better days to come.

Thank you so much for the outlet, support, advice and resources. Have a super day.

Z

Hi Spring,

I have gone from 30X back in December to about 10X today. I had the weight to lose. I am 6 foot. I weighed 240 lbs. I am around 198 lbs today. I eat 1 instant oatmeal every other day. I drink Ozarka water continuously. I know I cannot sustain like this. I am fortunate to have a nurse practitioner as a cousin who is very healthy. She is a body builder as well. She gives my my Humira shots and is getting me into some nutritionists here locally that have experience with people that have UC.

Your are totally correct. Starving myself is a terrible treatment plan. It was the only option that I could do to control my UC at the time. Now, I have a pretty good knowledge base on what I need to do to get on a healthy plant based food diet and start slowly with the proper specialists assisting me. Also, I am getting assistance with the mental aspects as well. This forum has been a blessing. I can only hope that it helps others as well. I will keep you posted on my progress. Thank you so much for posting. Have a super day.

Best Regards,
Z

I am glad things have improved that much, though 10x is still tough-that is about where I am while waiting on Entyvio to kick in. I am glad you have support too!

From what I understand it can take a bit of time for the Biologics like Humira to work. I have heard 3 months is common.

Hi jubjub,

Yes, we tried to get approved for Remicade. I have to go with Humira until they see if it works or not. Then my insurance will cover the Remicade. Thank you for everything. Have a super day.

Best Regards,