Poopydoop, Thanks. I will keep that in mind. I am still unable to find anything and still hiding at home. If I catch it I'll be on here posting for more ideas. Tomorrow is Remicade infusion day. Some...
Egfr or egf is the filtration rate for your kidneys. This rate can indicate filtration issues for patients taking IBD medications--some of which are nephrotoxic. If your numbers are consistently low...
I have severe fistulizing UC/Crohns..so I will be different from you. I fought against surgery for 2 years. tried LDN, beginning meds and then Remicade. While Remicade worked..sorta...we had to do a...
One more thing, for me... Calcium was a kidney stone, RBC was from the damage/struggle of kidney function/and that 5mm kidney stone, and protein was because my kidneys were struggling to filter. Thus...
I had this happen to me in May 2021. I had surgery to remove the remaining sigmoid from a colostomy because a rectovagina fistula was secreting mucus by the urethra causing severe kidney infections....
When in Texas during spring and fall I have congestion and daily fistula output. (Seasonal allergies) During the times of congestion, if I travel to New Mexico, Colorado or to the shore by the ocean...
My GI said to wait at least 3 weeks after and 3 weeks before. He also said if possible to not take my methotrexate during that period. I followed those suggestions but after 2 Pfizers and 1 full dose...
I just received my 3rd shot the first part of November... We were waiting for the authorization to switch between vaccines... And then we had to time it with my infusions. So as soon as I can get the...
Minnie, OMG!!! That's awful! I am sorry you are going thru this yet again. I have a friend that was diagnosed with Omicron. She was admitted in the hospital and she is still struggling. She takes...
I am an older female. Fertility issues did not enter my mind. I already had 2 children. A friend had her eggs saved. A male person in our ostomy group had his sperm saved and yet another lady decided...
You are welcome I am here anytime. You must have read all my previous postings. LOL. That is almost exactly what happened to me. Fistulas, incontinence, pain and sepsis....and now a colostomy. I will...
Checking in here too. How's the cream going? Clo...
I agree poopydoop - unfortunately some people in Texas don't want to get vaccinated or wear a mask. They are usually those same people that selfishly go into an infusion place before obtaining the...
Sometimes I sound exactly like you... So don't think it's just you. I was alittle confused about home town. Home town as in where you live now or where you grew up? It's difficult to speak to people...
I am sorry you are dealing with this. It is criminal. It's terrible. The Pharmaceutical companies should be ashamed of themselves since these medications are necessary. Remember the epi pen fiasco?...
Poopydoop, Thank you for your response. I didn't find that when I googled it or I just missed it. I was in such a panic mode. My GI actually called me tonight at 9 pm. He has moved my appointment to...
Today my infusion center called. Apparently someone came in, had them start her infusion and 39 minutes in she said she "just now" got a text she had Covid. She had no idea she really had...
I read this too! It would be wonderful if it worked....
Absolutely. You can have structures while in remission from your disease. As said before... Structures can be from scar tissue caused by previous flares. What are your symptoms? Clo...
I believe I read yesterday? that 43 percent of the vaccinated hospitalized patients in Texas were immune compromised, and I have forgotten the other percentage of vaccinated hospitalized patients...
Ohhh... I am unsure on a jpouch. I have a colostomy and ended up with a hernia that strangled a portion of my colon and caused an obstruction. Repair and relocating the stoma was a nightmare... Clo...
Darn. Sorry to hear that it was severe...but.. Glad to read that you have received your results and have a game plan in place. I knew you were having issues and struggling with things--I just had...
I developed an aggressive fistulizing form of Crohn's/UC. I tried alternative methods, diet, the beginning medications and quickly graduated to Remicade, an ostomy, and Remicade again. I distrusted...
I contacted my infectious disease doctor again. No Evusheld for me until after everyone else has theirs--because I am retired. I will go before the "healthier" immune compromised though. Their said...
Bucko, That's what they told me on my last fecal test. After I spoke to a supervisor, they advised me I could refrigerate and bring it in within 4 to 6 hours. (I think) Can you call the lab and speak...
Bucko, Sorry you are going thru this. When I first came down with Crohn's I was going to the bathroom 15 times a day, lots of blood, nausea, difficulty swallowing and pain after eating. I lost 60...
Hey 3x, Glad you are still doing well.... Happy New Year! Clo...
therearemiracles, When is your scope? I don't have any idea how to combat what you're experiencing. Once I started Remicade it helped it. Before Remi I was not able to get it under control. I had to...
CCinPa, Glad your infusion went well! I have a port--Thank Goodness. My GI and CRS had it placed in 2015. After 6+ years of Remicade my veins are shot so I am relieved they did that. Maybe it's...
I spoke to my friend this am. She's doing great. She said her infectious disease doctor said that usually people get this when they are exposed and have their masks off for a longer period of time....
Keith, I am envious of your response to the vaccine! It's one of the few times I have ever prayed to be alittle sick so I'd know I had a response. Lol... Stray dog, if I get sick I am coming to your...
Hey Guys, Thanks for your responses. I have been totally wigging out today. CC--mask on and no snack. I am not taking the snack. No mask removal for me. I live in Texas. My friend lives with her...
Keith, I didn't have any reaction to Pfizer. I am unsure on the Moderna. I had or was in a mini flare and I was having issues because we had been adjusting the timing on my Remicade and I hadn't been...
Thanks for the great ideas all. Today I did speak to PCP who referred me to IFD. IFD said they are notifying people when they are eligible for Evusheld. They are giving to first responders first....
Sorry to hear that you are going thru this. It's always difficult when we find that we have additional health issues along with our IBD. I frequently find myself considering the propensity of IBD or...
Keith, Have friend with Crohns that was just diagnosed with Covid. While well she could not find Evusheld either. Now she can't find Paxlovid pills for after you catch it.... She said they were on...
Hey guys, Called around yesterday again. I can not find Evusheld. PCP staff said he is not getting it and to call my infectious disease doctor. IFD is swamped with patients in the hospital with...
therearemiracles, I don't have any answers for you. I just wanted to tell you I am thinking of you and hope you get some answers on your scopes. BTW... I too have noticed that I feel better at...
Congratulations on your son's remission!! It is wonderful to hear that someone is doing well. I think that when people check back in with success stories it gives us such hope! I hope he has many...
Charlie789, I am sorry you are going thru this. I was diagnosed with UC by 2 different doctors within a timeframe of 6 months and after separate scopes. In the 7th month I had fistulas appear. It was...
Merry Christmas everyone. I hope you all have a wonderful holiday! Clo...
Checking in. How are you? Clo...
Twingirls, Sorry, I thought I corrected that. I did not mean Evusheld. I was referencing Paxlovid. I apologize for the confusion. No one I contacted knew who I could contact for Evusheld. I'll start...
Hello Jim, Welcome to the forum. When we run low sometimes our ostomy support group shares supplies. I donate to them as much as I can. So if you run really low you might try reaching out to them....
Thanks all I went shopping thru all my doctor's today... Still trying for that 4th shot. They all said no. I have to wait 6 months. I'll try again in a couple of weeks. I did talk to some about...
I had 2 Pfizer's, 0 antibodies, took a full dose Moderna, 0 antibodies after about 6 to 8 weeks, and am now waiting for a 4th full shot which my PCP, Infectious Disease, GI, Colorectal surgeon,...
Hang in there. Test results take about a week. For me, I have had symptoms with high or low readings on Remicade or antibodies. It just depends on what is going on. The symptoms range from mild to...
Thank you Keith for posting this! This is a game changer. I just fear that people will refuse their vaccine series and boosters now. Clo...
Hey all, I spoke to one of my doctor's today. He said that he has heard and read multiple things. The end point was the state/people/establishments will receive a small amount at first, around 1400...
HaleyA, Hopefully the antibody test results should be in before your next infusion. If it were me I would message for the results and ask if your GI wants to change the amount of your Remicade on...