Alexis with her husband!
I’m a physician (NOT a gastroenterologist!) in the Air Force. I live with my husband and two dogs in possibly one of the coolest states.
Colitis Symptoms:
Recently, my bowel disease has been under excellent control (confirmed with colonoscopy), but I’m struggling with extraintestinal manifestations – a migrating polyarticular arthritis, recurrent episcleritis, erythema nodosums, and small-vessel vasculitis. I also have chronic gum disease (periodontitis) which multiple periodontists haven’t been able to treat or explain; I don’t know if it’s related to my Ulcerative Colitis, but it seems to flare in conjunction with some of my UC-related symptoms.
Alexis’s Story – Extraintestinal Manifestation Suggestions
UC has been a part of most of my adult life. I was diagnosed with UC (pancolitis) at age 21, initially off and on prednisone for several years. In about 2008, I went on Remicade, and was on that until late 2016, at which point I was both tired of the side effects (a pretty resistant case of eczema and recurrent face breakouts), and felt like it was not controlling my extraintestinal manifestations. Erythema nodosum was my first extraintestinal manifestation which showed up in ~2015.
erythema nodosum on her foot
Since then, I’ve recurrent episcleritis, a migrating polyarticular arthritis, and a leukocytoclastic small-vessel vasculitis. I switched to Entyvio in Nov 2016. I’ve been on sulfasalazine, Apriso, and Lialda, and now back to sulfa (dose recently doubled).
episcleritis
arthritis right middle finger
arthritis-left-ring-finger
I’ve had some periods where the UC was under great control and I felt healthy, and a few, mostly minor, bowel flares throughout the years requiring either oral prednisone, cortifoam, or cortenemas. My family (none of whom have an IBD), have always been supportive. My sweet husband has been incredibly supportive, especially over the last couple years as I’ve had a real tough time with the extraintestinal manifestations. My husband and I have been diagnosed with unexplained infertility (which I know the literature says shouldn’t be related to the UC), and are starting infertility treatments.
vasculitis
vasculitis-healing
At the moment, I’m taking sulfasalazine (2,000 mg twice daily) and vedolizumab (Entyvio) infusions every 8 weeks. I also take 4 gm daily of folic acid (to offset the sulfasalazine). I am nearly 3 full weeks into a ketogenic diet induction.
I am curious if any other UC’ers have had gum disease, which is something I’ve been struggling with for several years. I can’t find much convincing data in the medical literature to suggest that it’s related to the UC. I also considered maybe it was a side effect of the remicade, but it hasn’t gone away after being off the remicade for several months.
Medications:
I’ve been on sulfasalazine, Apriso, and Lialda, and now back to sulfa (dose recently doubled). I’ve been on remicade and now entyvio. I’ve been on prednisone, cortifoam, and cortenemas to treat flares.
written by Alexis N
submitted in the colitis venting area
I am a 30-something-year-old woman, currently living in Alaska. I’ve had UC for 13+ years, currently on Entyvio and sulfasalazine. Dealing currently with extraintestinal manifestations.
Thank you so much for sharing your story Jennifer, and for being so kind to include the pictures of the extraintestinal manifestations. (Very much appreciated, and for sure others here will be able to relate to them).
I do not recall in the past 8 years of other people mentioning the gum disease you mentioned, however that could as well be a case of other folks thinking that it is not related to UC and/or UC meds and just not mentioning it. We will hopefullly soon find out, and NO MATTER what, I wish both you and your awesomely supportive husband the best of luck with the coming months and years!
THank you again for sharing,
Adam
Wow Alaska, try a medical grade vitamin d supplement.
FMT has kept me flare free for two years. Although I do have occasional extra intestinal symptoms, psoriasis at my extremities.
I used to take sulfasalazine and found I had more issues. What seems to work with my flate ups the most in a decent diet (absolutely no fast food) and the powerful Milk Keifer. If im flaring up, I drink Keifer untill better. Sometimes it only takes a week of drinking my smoothie. I use fruite, protein powder, honey, and keifer. The extra ingredients help with the sour bitterness of the Keifer. I have been med free for 2 years and mostly stable. I hope this helps. BTW a 16 ounce cup has more prebiotics then 10 bottles of other forms.
Hope this will help with your UC and reduce the others problems.
I checked with my dental hygienist. If your gum disease has not been treated you need to treat it as it won’t go away on its own. No cure for periodontal disease. It could be ongoing needing regular treatment. Autoimmune disorders can cause so many issues. And that is also one.
Thank you for posting pics. No doctor has been able to say why my one toe has a huge joint. It looks like your finger.
Prayers to you for healing.
Hi Alexis or ?, Crazy interesting pictures. I have stuff going on in my mouth that includes periodontitis. I’ve also developed another autoimmune disease in my mouth called erosive oral lichen planus which gives me blisters in my mouth and on my tongue, my tongue is swollen and always feels like it’s burnt. I had problems with episcleritis when I was on Azathioprine. I have those little dots on my skin once in awhile but I haven’t had those diagnosed. This disease is such a challenge~
My teeth started having problems just before I got sick with UC. (six-ish years ago) I’ve often wondered if the anaerobic bacteria from gum disease contributes to my UC. I say that because when I go on steroid mouth rinses to calm the lichen planus, my UC improves a bit. I’ve never gone into remission yet but I’m hoping that will turn next week when I get my third dose of Entyvio. I’ve taken Mezavant for years – also oral and IV prednisone. I’ll only do steroids in an extreme situation now because I have steroid induced Osteoporosis.
Now that I’ve been forced because of pain to stop using/doing harsh things on/to my gums, my periodontitis improved. I use a WaterPik with an orthodontic tip (which I follow across the gumline) several times a day and a special toothpaste called (tooth builder by Squigle) on an Oral B toothbrush. I also do something some days called oil pulling.
Good luck
Hi all, thanks for the responses!
Cwl – yes, I’ve been on large doses of vit D for some time – like 5,000 IU daily (the regular doses weren’t enough to get my serum vit D level into the normal range!)
Kyle, thanks for the advice. I feel like I eat pretty healthy most of the time, even before recently starting the keto diet. We pretty much never ate fast food, and avoided most processed foods and grains/carbs at home. I have tried gut probiotics in the past without much change. I guess I should continue to be grateful that I’m not having bowel symptoms!
Rosanne and Heidi – thanks. I have been seeing a periodontist (or periodontal hygienist more often) every 3 months for at least 4 years for cleanings in an effort to minimize bone loss. I’ve tried several months or oral tetracycline antibiotics (which didn’t help and made my GI doc less than happy) and over a year of daily topical steroid gel (which I had to put in trays and wear for 30 mins a day). It didn’t make much difference either. At one point they biopsied my gums (which just showed nonspecific inflammation), and even tried cutting out a piece to see if removing some of the inflamed tissue would let it heal… Honestly, I do think I’m *starting* to see an improvement with the chewable oral probiotics, which I bought on amazon. Even my hubby said they look less red and irritated. We’ll see if there’s any difference in pocket depth the next time I go in for a cleaning. Fingers crossed…
Heidi, I did buy a waterpik a few years back but maybe need to pull it out and give it another try! Best of luck with your Entyvio.
Sounds like you’ve been through quite a bit on your journey! Dealing with UC and it’s side effects can feel a little bit like chasing falling dominos. I think the most important thing is to never give up and always have hope. You never know when the next medical breakthrough will happen. It can be hard not having concrete answers. I try to trust my instincts on what treatments/natural remedies to pursue. I have a long way to go, but I’ve learned so much in the last 9 years. Doing a stool test to show the different levels of bacteria that are out of balance in my colon was very eye opening to me. I discovered that one, citrobacter freundii can also be related to dental issues. I’ve tried various diets and probiotics but am still researching stronger methods for getting the gut dybosis back in balance. I’m about to start my second biologic, but I hope one day to be in sustained remission without the heavy drugs. There are days that are very hard, but overall I know the future is bright and every day is worth fighting for!
You may wish to try colloidal silver mouth washes with a concentration of 15-20 ppm. It has also worked to control UC bleeding in some patients via anima. Best of luck
Periodex (chlorhexidine mouthwash) is one option. Use it every night before bed. My cosmetic dentist recommends it. He is in his 60s and has amazing teeth and gums. There have been studies showing it prevents gum disease and tooth loss….
Just be careful with chlorhexidine washes as they stain teeth….
I’ve been reading up a bit on antioxidants and they are all so important and maybe hard to get if we can’t eat so well. Anyways, Vitamin C deficiency can show up as inflamed gums. Might be worth taking some in supplemental form. Certainly can’t hurt.
Thanks for the wishes Alexis
There is no reason to be on Apriso, autoimmune drugs, or any of the Western nasty drugs to treat UC. I was diagnosed with UC via colonoscopy and biopsy’s early February 2017, and had 12 trips to the bathroom everyday with a lot of blood loss. Got on a great Chinese supplement and within 3 days my bleeding stopped completely and after 10 days my diarrhea cleared up. My GI could not believe it. He wanted me to start taking Apriso and was preparing me for autoimmune drugs. After examining me and noticing the swelling was gone in my colon, and the fact I was in total remission (I called it healed) he had no choice but to say, “wow, I’m happy for you, come back in 3 months”. There are many Chinese supplements that will cure (yes, cure) UC with no side effects. Find a good homeopathic Dr and get cured! I’ve heard that Dr Gary Chen in Encinitas, CA has a great record of curing UC in many patients. I know several that were cured by him and have had no flares for over 20 years. Call it remission, call it cured, but after 20 years…..I call it wonderful. As for me, I’ve had normal BMs with no bleeding, none what so ever, for 2 months now. I went from thinking I was going to have my colon removed to the point I don’t even think about UC any more. I’m still taking a Chinese supplement and will continue for a few more months then taper off of it. Time will tell, but for many I’ve talked to, they swear they are cured….
Thanks all!
Update: my gums are noticeably better. It could be the oral probiotics, but honestly I suspect it’s because I’ve been off the remicade for several months now. My eczema is basically completely healed, thank goodness, which I think it’s safe to say was a side effect of the remicade. I wound up losing about 13 lbs on my month-long keto diet cleanse, and have tried to continue eating low carb. And, after more than two years of trying and two rounds of infertility treatments, we’re finally pregnant! It might be the relative immune suppression of the pregnancy, or maybe the switch to Entyvio and sulfasalazine is finally taking effect, but for the time being my vasculitis is almost completely healed and my joints have been much less painful. I still don’t have full range of motion in my ring finger after what was ultimately deemed a dactylitis, but at least the pain and swelling is much better. Overall good things! Of course, I should know after all these years with UC to be patient and wait for better days… :-)