Kate with her family!
Intro:
My name is Kate, I was diagnosed about 14 years ago and last had a colonoscopy about 15 months ago. I had a brief remission for six months following a colonoscopy Three years ago. and been ill ever since. It was an extremely stressful time in my life, so there goes the theory that stress induces flares.
Some more about Kate:
I’m American-Australian, living in Australia. I’m a proud mama of two, full time counsellor (Aussie spelling), and burn my candle at both ends. I’m an armchair political activist (leftie), mad Pinterest pinner, cocktail enthusiast, EBay & Costco lover, camper, beach goer, dog and cat poo picker upper. I’m usually found hanging out in a paddock with my daughter’s horse and son’s dirt bike/scooter/skate board obsession on the weekends if I’m not having a laugh with friends around the fire pit or by the pool if it’s hot.
Symptoms:
The worst symptoms for me are secondary to the bowel, though it gives me grief. I suffer from terrible flares of mouth ulcers and arthritis (which has been ongoing for several years). This year I have also had debilitating tendinitis and skin problems as well as an inflamed tongue and dry mouth, making it hard to speak clearly. Does anyone else suffer with these symptoms? I get them all at once, like a huge attack. I am fighting one right now and on a second course of prednisolone which is helping.
I have had about 7 flares in the last two years with severe arthritis and the other secondary symptoms. the worst one was perhaps when I went to the ER with heart attacking symptoms which turned out to be costochondritis. My GP did a bone scan and was worried about my bone density (beginning of osteopenia) and out me on a bone density med he thinks triggered that episode. I think it was mainly the arthritis in my back.
It led to an array of X-rays ordered by the rheumotologist and tons of blood testing and they never could find anything wrong. I never even show any inflammatory markers, which is just so weird and frustrating. This week my ankle was so blown up (4 xs size) my GP could see I am not making this stuff up. But it has felt like I am a malingerer because my symptoms come and go daily with various joints, tendons, ulcers randomly flaring each day. This week I seriously could not walk and was grabbing onto the railing, but the next day with the steroids was walking around with just a slight limp.
Kate’s Story:
I’m really reaching out to see if others have similar secondary symptoms and what their treatment has been that has helped. I am being advised to go on remicade after over a year of resisting it, this latest flare has me desperate. I hate the idea of it being a mild chemotherapy and the whole thing about what it does to a foetus freaked me out, though I have zero interest in getting pregnant. I just thought, if it does that to a foetus, what is it going to do to me?!
I have only ever been on sulfasalzine enemas and pills and am now on mesavant. My bowel is generally better, but I still have on and off flares daily or weekly and my other symptoms seem to come in flares every few months for a couple weeks. The current one has maybe been triggered by a flu I can’t seem to shake (it’s been 5-6 weeks). I just did more blood tests and a nasal swab for the flu and a baseline for my bloods in preparation to go on the remicade.
Sometimes I go for a couple weeks with my bowel settling. Usually I go for months with no arthritis or tendinitis, but have still been getting the dry mouth, swollen tongue and mouth ulcers. So the mess are not really enough and it is time for a big change. Any feedback or ideas is much appreciated. I have never changed my diet much, just avoided certain things during flares but I hate diets and being food obsessed, I just don’t want to do it.
My husband is a real pain the ass sometimes and just doesn’t get it. He thinks I need to exercise to get well, which just pisses me off when I am in such a state. Of course the extreme fatigue is something he just doesn’t understand either and I am working full time and doing way too much of the load at home. He travels a lot, too, so then I am under more exhaustion. Sleep definitely seems to help a lot, but I hardly ever get enough with my work schedule and when I’m on steroids of course it can be hard to sleep sometimes.
Medications:
My GP is great, an English doc, but the rheumatologist seemed aggressive in approach and said she doesn’t really treat UC attends. I’ve been through three Gastros, the latest moved away and had a gentle lovely approach, but maybe not very effective. It seems the gastric just look at the gut symptoms and not all the others and the bigger picture of the autoimmune disease is not holistically treated. I kept hearing, if we treat the bowel, the other symptoms should go, but not for everyone.
written by Kate BA
submitted in the colitis venting area
My name is Kate, I was diagnosed about 14 years ago and last had a colonoscopy about 15 months ago. I had a brief remission for six months following a colonoscopy Three years ago.
Hi Kate, I had similar issues with my tongue swelling and being very sore. I thought I was dehydrated so I tried to drink more water. I also felt like my body, specifically my mouth, was acidic so I bought some pH testing strips and it did show a bit acidic. Lately it hasn’t been so bad, but I can empathize with you and how bad it gets. Don’t know if it has directly helped or not, but I started putting baking soda on top of my toothpaste when I brush my teeth. It does make my mouth feel better. Baking soda has a high pH of 9, so is low acidic.
I’ve had Crohn’s for 25 years, take Lialda and Entecort. I’ve been fighting Remicaid for about 5 years and finally succumbed to the poison. My GI is also putting me on Imuran to help thwart off antibodies. I mostly have the typical small bowel symptoms, going at least 10 times daily to the bathroom. I am tired all the time, but I am lucky to be able to work from home. All kids are grown so don’t have that added responsibility. I am hoping to get off Remicaid by the end of one year. GI doesn’t think so, but ultimately it is my decision.
Hope your symptoms are controlled soon. Hugs from Florida, USA!
Oh, and I forgot to mention, my arthritis has also been terrible the past 6+ months. Bad in my hips and pelvic area. I know it is bad for people with GI problems, but the only thing that remotely helps is Aleve. This disease really sucks! I feel so broken all the time. I used to count the days I felt no pain, but can’t remember the last time I had none.
This is just a note to you DebraK…
I don’t believe that we with GI tract problems should take Aleve, or Advil, or any ibuprofen…in case you weren’t aware? I think we are only to take Tylenol for pain.
I know, Tylenol does not really work as well for me, either. Advil was always better at pain…
Cheers
Hi Bev, I know it can cause problems and I know it’s bad for people with GI problems as I mentioned above, but even Tylenol Arthritus doesn’t phase my pain any more. But for me, there is a point where I just want a couple of painless hours and I resort to Aleve. Doesn’t always work, but mostly does. I have a lot of headaches, too, and it does help them, unless it’s a migraine. Sorry, I don’t want to promote taking Aleve, just confessing what I do…
I totally understand. I didn’t know if you knew or not. I didn’t know for the first 10 years of having UC and I took advil all the time.
Tyllenol sucks at reducing pain. I agree!
Kate,
Diagnosed in late 2008. On & off bad flares –even losing 2 pints blood & put in hospital at one point.
Say what you will, but I went on Remicade in June 2012 , and since then TOTAL remission.
I have an oncologist do bloodwork every 4 months looking for unusual changes. So far so good.
If I were you , i’d go for it. You have nothing to lose.
Hi, my daughter is on Remicade. She has a regular full blood count. What does an oncologist look for? Kind regards Denny
Oncologist looks for & treats low Hemoglobin , Anemia,etc. Typically caused by loss of blood.
I totally understand what you are going through!!!
It helps to be gluten free, dairy and sugar free. SCD diet helps!!!
Please read on google about fecal transplant and dr Borody, who treats in Australia.
Hope it helped.
Thanks for the supportive comments. I made a mistake- my doctors want to put me on methotrexate, NOT remicade. For now, the prednisolone has magically cleared all my secondary symptoms, but in a couple days I go off it and then we will see what comes back. My GP thinks the methotrexate may be fantastic. Hmmm…
Hi Kate
It sounds like you are having a pretty rough time. I’m experiencing mouth symptoms too. Since my diagnosis about 4 years ago, my mouth health has been deteriorating. I have gingivitis and periodontitis and now I’ve developed mouth ulcers, swollen tongue and generally a painful mouth. I was referred to an oral surgeon and he thinks I have a condition called lichen planus – this is another auto immune disease. I’ve just had a biopsy done today to confirm the diagnosis. It will take a couple of weeks till I get the results.
Anyways, I didn’t want to talk about me other than to make a suggestion that you might also have this other auto immune disorder.
Good luck to you.
Hi Kate, I have had UC for over 30 years and have suffered from all the symptoms mentioned above and more (dry mouth, mouth and bowel ulcers, fatigue, weight loss, arthritis, muscle weakness, psoriasis, leg cramps, tendinitis, incontinence, full-on UC flare). I have tried most conventional medicines and experimented with many, many alternatives in trying to improve the quality of my life, almost all of which have had no lasting benefit. However, I can unreservedly recommend to you that you give the specific carbohydrate diet (SCD) at least a one month try. From my experience, it is the only thing that will predictably heal the gut, which must happen first before symptoms are under control. Your dry and ulcerated mouth is likely a side effect of the prednizone itself (check prednizone side effects). Arthritis can be helped through a daily diet of a cup of Knox jello made with pure grape juice and water. See Elaine Gottschall’s book Breaking the Vicious Cycle to get a true understanding of what is going on inside your body. I am currently in my 60s, medication free and near symptom free due to Elaine’s SCD advice. I am not trying to sell anything here. Get the book out of the library or check online at SCDiet.org. You will not regret it.
It is not uncommon for colitis sufferers to have more than one autoimmune disease. Most go undiagnosed and lumped in with the Ulcerative Colitis. After being diagnosed with severe Ulcerative Pan Colitis I was then diagnosed with Sjogren’s. Another auto immune disease that causes dry “everything” (mouth, nose, especially eyes for me), mouth ulcers, joint pain and extreme fatigue – most common symptoms. You may want to check out the Sjogen’s Foundation website. My Sjogren’s has flares just like my colitis but they are not connected in that I do not usually have both flares at the same time. Mouth ulcers, sore tongue and tooth decay are very common with this disease.
Heidi, I will have to nvestigate the lichen plants one and I have asked my GO if I have Sjogren’s a few months ago, but I think he wanted me to go see an opt homologise for some kind of eye test and by then the symptoms had cleared. It comes and goes and is not a steroid side effect- it happens when I haven’t been in steroids for months and the steroids clears it up. Peter, you know I hate diets- loathe the whole idea of them. I will *try* to consider it and look into it.
HELLO,
My son was diagnosed with UC 2/7/15. Lost 40 lbs. down to 93lbs. in the bathroom all the time vomiting or bloody stools. This came out of nowhere. Long story short his large colon ruptures 3/22/15. Had a subcoloetomy he was hospitalized 2X in August for 2 small bowel obstructions. Finally out of the hospital he was out for 1 week now has jaw pain he can not even open his mouth to eat. went to the ENT was given valium to take before bed to relax his jaw and moist heat, nothing has helped. Now his wrists, elbows and hips are hurting. Have an appt with a RA DR on wed. He is only 21 and my heart is breaking it is just not stopping for him.
Has anybody else had this problem? And what was done?
Hi Kate, sorry to hear about your symptoms. I, too, have had tendonitis, arthritis, and the occasionally sore tongue. Luckily, I’ve never had extremely dry mouth or significant mouth ulcers. I also have gingivitis/periodonitis, and have tried multiple treatments from 4 different periodontists to no avail. I even had a gum biopsy at some point, which turned out not to be super helpful. I have had some noticeable improvement recently after starting oral probiotics (Great Oral Health brand on Amazon). I totally understand and sympathize with your frustrations with fluctuating symptoms. I swear I wake up and wonder, “what’s going to hurt today?” I do find ibuprofen very helpful with many of the inflammatory joint symptoms, and my GI doc doesn’t care if I take NSAIDs since my bowel disease is in remission.
I had some good years with Remicade. I have never been on methotrexate, although I’ve read that at the doses which are used for immune suppression, it’s apparently reasonably well tolerated (as opposed to the larger cancer-fighting doses, which can have more side effects). Hope things have gone well for you.