Yeah, I benefit from SCD. Due to SCD, I never had to escalate meds beyond mesalamine until I became hypersensitive to it. Since you are only on Pentasa, there are some more things you can try before...
Yes, feeling alone is common during a flare and with this illness, and this is compounded by covid. I am in a nasty flare as well brought on by a new medical diagnosis on top of UC that has caused...
Hi all, I'm going to try cymbalta for nerve pain and also in a minor flare. Is cymbalta safe for UC overall? What is your experience? Does it cause Diarrhea?...
Try the entyvio warriors group on FB. 10k members and many have been on sterala or just started it after Entyvio....
Get a GI you are comfortable with. I switched a few times till I found someone who is on top of things and responsive. Regarding meds, you need to stay on it usually for some time to get the benefits...
I never struggled with anxiety (even after difficult life circumstances and many challenges) until I got UC and other health issues. It's such a vicious cycle since anxiety maintains the flares and...
So sorry to hear. The rash sounds like more of an allergic reaction unrelated to the upper GI pain. Can you pre-medicate? They pre-medicate everyone in my university hospital with tylenol and clartin...
Sorry to hear. By the way, have you seen a specialist to manage UTI? urogynecologists may help with chronic UTIs since antibiotics may not be the solution. Sometimes people also have IC and are...
Stress management is key. I meditate daily and try to reduce stress during flares. I also had the worst flare this year since I got a new medical problem + covid in the background. During a flare I...
Can you take a high dose probiotic, visbiome, while on Entyvio?...
The white coating can be the suppositories coming out with the stool. Also, the black may be a mix of blood and the suppository. What you can do is stop the suppository for 1 or 2 days to see what...
Sulfasalazine and mesalamine formulations are the safest drugs we have for UC. They are generally safe for LT maintenance so it's important to stay on them. He can try 2-3 times a day when he is in...
I-2 BM, semi formed with no blood sounds like remission overall or very close. Maybe you have a mild amount of inflammation if you have some urgency in the morning, but it definitely doesn't sound...
Yeah, changing your microbiome is possibly risky because nobody understands the microbiome and it's super complicated. I consulted with a few microbiome researchers for UC at my university hospital...
I'm very confused by your post. I have consulted with many GI's at the top research institutes and have never heard anyone recommend a biologic as first line over mesalamine unless someone doesn't...
I unfortunately developed a hypersensitivity to all mesalamine and my inflammation is always worse in the rectum even though I have pancolitis at diagnosis. I have uceris foam, but that cannot be...
Great, this microbiome research really needs to be taking off! Hopefully in the future we will not need to treat UC with immunosuppressants anymore....
Family member (age 97) got the second dose (not sure which manufacturer). She has a fever, but is doing okay. I think most can handle it if she can....
Hey all, I'm in a flare due to mesalamine intolerance as you know. My GI ordered an MRI enterography to check on things overall due to delay in getting a colonoscopy (covid). MRI enterography showed...
The range of responses here just shows how heterogenous this disease is so no point in arguing diet vs. meds. A few thoughts: The reason why many of us turn to alternative treatments (diets,...
One of my flares was triggered by a run while i was training for a half marathon. Unfortunately, I had to drop the running because it always led to stomach cramps, acid reflux and flaring is so...
Troubled turds, did you have a mild case of pancolitis at diagnosis? I have pancolitis and had years without meds as well in the past--those were the best years!...
Here is an article on skin infections and Remicade. They are very common in IBD population on Remicade: https://pubmed.ncbi.nlm.nih.gov/26728295/ I would check the facebook group for Remicade (if it...
Flowers gal, Do you have to do anything about it? I was told to limit myself to 4 cups of water per day. I was at 130 today and normal range is 135 for sodium. It's dangerous if it gets too low....
Hi all, I had 2 episodes of low blood sodium recently, hyponatremia. One was when I had some diarrhea (3x) and another without any loose stools and only 2 stools per day. The only explanation the...
I don't have lupus, but I have ice cold sensations on the skin, burning, tingling and numbing. Sometimes it feels like cold water is flowing down. You need to get tested for small fiber neuropathy....
Hello. yeah, I second the food journal. Also invest in a good probiotic (e.g., visbiome etc) and try some of the diets that are recommended for UC (check out the AID-IBD diet). Dairy, gluten and...
I benefitted from SCD diet for many years. I also think the AID-IBD diet is well researched....
Body aches/pains can be an extra-intestinal manifestation of IBD. It can also be a side effect of mezzavant--check the list of side effects I believe muscle pain is on there. You can try tylenol or...
I am also considering Entyvio right now and GI ordered it. I wish I could be on mesalamine because it's definitely the safest drug for UC, but unfortunately developed hypersensitivity to it. In terms...
I think you are on the right track with your supplements. The ones that are most researched and popular seem to be turmeric/curcumin, probiotics, slippery elm, fish oil (omega 3). I also have seen...
What meds are you on? Can this be medication induced (biologic) or possibly an infection? I don't think it's related to UC directly either. You may need to consult with hematologist if you can't...
There is enough research on diet (AID-IBD, SCD, plant based) to show that it's very helpful as an adjunct or primary in some cases for maintaining remission. It also makes sense that eating foods...
Yes, doing mesalamine enema nightly and also will be adding uceris foam during the day. There has just been more bleeding going on. Today I had 5 loose BM with little blood (not much). The other days...
I thought I was doing worse. The BM's are basically the same at 2 per day, but there is more bleeding. What's new is that every time I pee like 6 times a day, there are small amounts of stool coming...
Hi all, I've had UC for 20 years. I am having a different flare compared to usual and am worried. I'm having 2 BM's per day with bright blood, partly formed. Then whenever I pee each time, I have...
Thanks. I think i'm already set on entyvio because it seems like a lighter medication and is only gut specific immunosuppression. Just need a bridge before I start Entyvio and it begins to work...
I also can't do anti-tnf ideally since I have neuropathy. Those meds are listed under meds that can cause peripheral neuropathy. That's why Entyvio was an option....
Thanks. I am doing the mesalamine 4G enemas and haven't tried uceris foam yet. Can you use both the uceris foam and mesalamine 4G enema or switch? Which is more effective....
Hey all, I am in the worst flare i've ever had since I had to go off mesalamine/balsalazide meds due to neuropathy I developed. I tried Budesinode and it didn't help or made things worse. I went back...
Hey all, Due to hypersensitivity of mesalamine, I had to go to Uceris 9mg for a few weeks to try it out. I've been on it only 11 days and so far my very mild symptoms have turned more intense with...
Hey all, This year I had the most acute stress i ever had due to a new medical diagnosis (not UC), covid and all the uncertainty that comes with a new disease. I had a UC flare up after the new acute...
Hi all, Due to my inability to take mesalamine anymore, my doc may want to put me on entyvio. I keep hearing that this biologic is a bit safer/less risky and 2 GI's recommended it to me since it...
Hi poppydoop, that is great news. Hope it helps you down the line. Does anyone know if pharmacogenomics testing is useful or is it a waste of money?...
Hey all, I watched a talk at the U of Michigan about IBD. There are over 240 genetic variations in IBD, and these can differ among ethnic groups as well. I wonder if this partially explains why...
gary, how did you have a remission of 20 years. That is rare. What were you on?...
Are you sure that mesalamine 4g enemas don't work for you? They are the best weapon we have for rectal inflammation and are generally more effective than steroid enemas. If you have a...
Have you tried rectal meds as an adjunct? They can work faster....
I agree with ipoop. There are likely hundreds of etiologies for proctitis and ulcerative colitis and most don't have to do with sexual activity. Some of the etiologies reported in research include...
Hahahaha---I don't think any of you are cognitively impaired with your sense of humor....