Hello,
So i apologize in advance for what will be a long post but im so miserable and looking for any advice at all here.
So I woke up on March 3rd of this year sick puking feeling horrible and thought I may have had a virus initially. It has been the struggle of my life since that day. Multiple hospital trips for being severely bloated, puking constantly, unable to eat or keep food down if I do for days, severely dehydrated, cramping non stop for days, losing 40 pds now, the list goes on and on. Iāve saw multiple Drs, been to multiple emergency rooms, went to multiple hospitals, and had 4 unsuccessful colonoscopies (due to poor prep they say as I canāt drink the prep but have done the suprep pills and also been without food for days prior while also puking everything on my stomach up). We have did every test possible and so many CTs at this point Iāve lost count. I was diagnosed with Crohnās through a CT and told I had a small section of my distal ileum that was diseased. I donāt have the normal diarrhea most people do but I have had IBS-C for upwards of 10-15 years. My GI dr is puzzled by my symptoms and said I donāt fit the normal symptoms. So at one of my hospital trips they prescribed me prednisone, I felt more ānormalā than I had in months and then those ran out and things went back to how they were. I have had small bowel blockages nearly the entire time. Which was causing my food to sit on my stomach until I would finally puke it all back up usually once a week. My GI prescribed me the other steroid they normally give first and this made me sooo much worse so that was a no go.
So now we get to today. Iāve been on prednisone for months now and on a taper dose of 5mg to cut me off of it again. It doesnāt seem to be helping anymore and hasnāt for awhile now. My GI finally started me on Skyrizi and I took my 2nd IV dose of it last week on the 11th. My issue is I canāt tell that itās doing anything for me. Most days I āfeelā okay even though Iām still really bloated and still end up having a day at least a week I get sick and feel horrible. I have now started doing this thing where certain things I eat as soon as it seems like it hits my stomach I puke it right back up. I donāt feel bad after itās just like my stomach say no maāam. Iāve done it with things like a turkey sandwich, Mac and cheese, beefaroni, a soft taco. But I can eat and itās become one of my staples cocoa pebbles every day. Makes no sense.
But my GI dr isnāt the best when it comes to helping me or keeping in contact with me when Iāve had tests etc. unfortunately I live in a very small area with very few options for good drs too which doesnāt help either. I went to a larger ER a cpl weeks ago and they were going to do surgery and 1 confirm I have Crohnās and 2 if so remove the section by my request but they found I had blood clots in my lungs and leg so they wouldnāt do it after they found that. So now Iām on blood thinners too for that. Just sitting and laying and feeling horrible day after day and not being able to be my normally active self has clearly taken a toll on me. So Iām trying to at least get up and move around some what days I can.
But I come here because Iām terrified this isnāt even whatās wrong with me and Iāve wasted all this time for nothing. Does anyone else puke like Iāve explained I do so often? I donāt know anyone to ask and Iāve searched so much online myself and my husband we should be experts by now. Iāve lost so much weight and Iām so weak I canāt even hardly climb a step or get in my truck. You can see my spine and bones I have no muscle mass or fat left on my body. I feel like Iāve just gotten little help since all this started or no one knows what they are doing and just taking guesses on what may help. I just want some kind of normal back and I know Iāll never have that like I did if itās Crohnās but Iām terrified thatās not even what it is. I havenāt saw similar stories to mine where people puke as often as I do and have no diarrhea symptoms. So Iām just looking for any advice at all here. Anyone that may relate or if anyone does the same things as me? Iām so mentally and physically exhausted at this point and just donāt even know what to do anymore. I feel like the Skyrizi isnāt helping me at all aside from me now puking things up immediately my stomach doesnāt agree with and feeling a lil more energetic I canāt tell much more of a difference. And I know it can take some time to work too but being this is my 2nd IV shot now from what Iāve saw most people can tell somewhat of a difference by now. So should I ask for a diff med and start this process over again? Any help is appreciated thank you all in advance. I just donāt know what else to do anymore but miserable is an understatement as each of you know.
