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New here (my name is Z)

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Ulcerative Colitis
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ZcylicTKK
New Member
Joined : Jan 2018
Posts : 9
Posted 1/28/2018 4:02 PM (GMT -7)
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
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Spring
Veteran Member
Joined : Jan 2017
Posts : 528
Posted 1/28/2018 5:14 PM (GMT -7)
I am sorry you are having such a rough time. Starving yourself doesn't sound like a very good treatment plan, so I do hope you can find something that gives some relief. Are you still going 30x a day?
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ZcylicTKK
New Member
Joined : Jan 2018
Posts : 9
Posted 1/28/2018 8:11 PM (GMT -7)
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
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Woogy
Regular Member
Joined : Apr 2004
Posts : 215
Posted 1/28/2018 8:29 PM (GMT -7)
Have you tried rowasa enemas? Those helped me a lot when I was first diagnosed. Between those nightly with the sulfasalazine tablets it could pull me out of a flare. Since you had c diff, have you been retested to make sure it didn't come back?? I hope you get relief soon.
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Spring
Veteran Member
Joined : Jan 2017
Posts : 528
Posted 1/28/2018 11:13 PM (GMT -7)
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!
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ZcylicTKK
New Member
Joined : Jan 2018
Posts : 9
Posted 1/29/2018 2:48 PM (GMT -7)
Hi Woogy,

I have not tried the enemas yet. I am going back to my GI in a couple of weeks. I will ask about them then. I was tested in late December for the C. Diff and got the all clear. I will say the C. Diff prepared me somewhat on how this battle is going to be. I would not wish a C Diff Infection on my worst enemy (if I had any). The Humira has not helped. I had hopes that it would. I tapered off the pred back in late December. I did feel a lot better on it. However, my kidneys just could not handle it any more. I have some UT issues that caused blood in my urine when on it.

Hi Spring,

I sure hope your Entyvio kicks in. I heard some good things about it.

Thank you both for everything. I will keep you posted. Have a super day.

Best Regards,
Z
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Spring
Veteran Member
Joined : Jan 2017
Posts : 528
Posted 1/29/2018 4:33 PM (GMT -7)
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.
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jujub
Elite Member
Joined : Mar 2003
Posts : 10421
Posted 1/29/2018 5:01 PM (GMT -7)
Of the biologics, I believe Remicade still has the best statistics for inducing and maintaining remission in people who have UC. You might want to discuss this option with your doctor also. I hope you feel better soon.
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ZcylicTKK
New Member
Joined : Jan 2018
Posts : 9
Posted 1/30/2018 11:08 AM (GMT -7)
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,
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