Meet Sharon:
Have had this for 26 years now and have never let it beat me – I’ve had to change my life around to fit in with the condition and not let the condition beat me. I’m 41 now – first symptoms at 15. Developed anal fissure – needed sphyterectomy – then the numerous bathroom visits started – had tests – told I had IBS – given immodium. All under control until age 23 when bleeding started again and numerous trips to the bathroom (15+) per day. Would pass vile green glue like mucous and blood. Saw consultant who was very unsympathetic and told me I had a rectal ulcer. Mild inflammation found in biopsy result never told I had colitis, however. Had 3 years off work as couldn’t leave the house and felt drained all the time. Even went to St Marks and they treated me with bio feedback. I have only recently been told that I have an IBD and they are deciding whether it may be Crohn’s or Colitis and I am confused about it all but what I do have is here and it’s real.
Some more about me:
I am very stubborn. I don’t let anything beat me. I am a singer and now go out at weekends singing in clubs and pubs. I grew up in Essex and am of Jewish Italian decent although I wasn’t brought up as Jewish. When I had no choice but to take time off from work, I decided to do a course in accountancy and book keeping so that I would be able to work more from home. I was able to gain a few clients and come off benefits and gain back some self worth. I find that people don’t understand (even close family members) and think you are lazy or skiving.
Colitis Medications:
Visiting bathroom 10 – 20 times a day with urgency, mucous and sometimes blood. Abdomen pain, Pain in the right eye, left knee and very very tired. Also mouth ulcers.
It Won’t Beat Me
I don’t know if I’ve ever truly been out of a flare but I may also have IBS so I’m not sure. For 18 months now (when I am not on prednisone) I have been getting mouth ulcers and a terrible pain in my eye and an urgency to get to the bathroom with undigested food or mucous with occasional blood and visiting the bathroom at least 10 and up to 20 times a day. I am very very tired all the time and don’t have much energy at all.
I had a gastroscopy and the guy said that it looked like I had Crohn’s but the biopsies didn’t show anything. He told me I had severe gastritis and gave me lanzaprazole. I had a colonoscopy which showed clear. I was given pred foam enemas and I improved slightly but only slightly.
I decided to self medicate and buy myself some prednisone from Spain and I improved within a week. I told the consultant and he was miffed. I continued for a month and I was perfect – result. The consultant took me off them and I went down hill. This pattern has been repeated 6 times now until November 2012 when I had another colonoscopy which looked clear but the biopsies showed mild inflammation. I have been put on Mezavant. I have been relatively fine for 4 weeks now (been on mezavant for 11 weeks)
Last week, I had ulcers on my tongue and felt tired. That night I had severe night sweats and the next day was spent in the bathroom, and the next and so on. Have now been given pred foam too.
Doctor says this sounds like Crohn’s to him but that he is treating me for colitis as he can’t see the evidence of Crohns even though it sounds like Crohn’s as he says the pain in the eye, the knee, the ulcers on the tongue isn’t ususal for Colitis but can be for Crohn’s!
He says that because I respond to Colitis medication and to steroids then it must be an IBD even though he can’t see it and the stool test and biopsy shows mild inflammation.
I am much better today as I have only been tot the bathroom 5 times but I still feel a bit tired and the pain behind the eye is still there.
Does this sound like an IBD? I am holding out hope that it is still IBS.
If this is mild, I would hate to have severe inflammation.
Thanks, your site has helped me.
Colitis Medications:
Mezavant, pred foam enemas
Prednisone has worked the best for me but I know I cant take that forever.
written by Sharon
submitted in the colitis venting area
Have had this UC for 26 years now and have never let it beat me – I’ve had to change my life around to fit in with the condition and not let the condition beat me.
Hi Sharon;
You are a tough lady! What is a sphyterectomy? I’m thinking about doing the accounting thing too. Right now I’m back in school working on becoming a teacher, which has always been my dream. But my butt says otherwise. It’s inspiring to read that after all the years of uncertainty you are still fighting this condition tooth and nail. Thank you for sharing your story!
Hi, sorry I havent replied, I didnt get any of these comments in my in box and have also just been on a lovely 2 week cruise so been off line. A sphyncterectomy (if I’m spelling it right) was an anal stretch due to having a fissure at the end of the anus.
Thanks for your reply and good luck, it’s hard t find a career when you have to time things around the bathroom!
X
Hi Sharon, it sounds like you’ve been through a lot but have been handling it quite well. Have you ever been tested, or are you able to get tested, for celiac disease or gluten intolerance. Both are the same thing – new research is showing that gluten intolerance is a wide spectrum, from severe to mild with celiac disease being on one end, mild intolerance on the other and everything else in between, ultimately manifesting itself in different ways in different people. The bottom line is inflammation, caused by leaky gut syndrome which permits undigested food particles into the bloodstream, thereby setting off our immune system to fight a perceived “invader”. It also means the body is not able to absorb nutrients, vitamins and minerals properly leaving us vulnerable to disease. Since the doctors can’t seem to determine if you have Crohn’s or colitis, perhaps they haven’t looked for signs of celiac disease. Best of luck to you.
Sharon,
I used to get ulcers in my mouth too. Back then one doctor said it might be herpes, the next one said it was from smoking because I smoked at the time. I haven’t gotten them in a long time now but I read they are a sign of Crohns. I have officially been diagnosed with UC but have had 2 doctors now tell me they think I may have Crohns, because during a colonoscopy they found inflammation in my small intestine. Also, out of nowhere, I am suddenly getting kidney stones, which is also a sign of Crohns! I have had 4 stones within 5 months, after never having a stone before! Crazy! I also had a flare in 2009, really bad, where my eyes were also imflammed. They were so red it was obvious looking at me that something was wrong.
I really hope you get an official answer and some relief soon! It was over a year before I was diagnosed and waiting to figure out what is wrong with you is frustrating. I’m glad to hear that you are living it up as much as you can despite this disease, we all have to fight so we can still do the things we love!
A person can unfortunately have both. I would personally modify your diet and keep a food journal of the things that bother and don’t so you know what is best for you to eat. Also get tested for gluten intolrences cause that could cause issues too. I am on Remicade and 6mp which are both immunosupressants and am doing really well. but until you are diagnosed I would just eat fresh non processed foods, nothing with skins, no raw fruits or veggies cook them, cut out gluten, no alcohol, or sodas or sugary drinks no caffine, I know very strict but it helps. at a bannanna a day they help woth the d and potassium levels getting too low, also not nuts or seeds and very lean meats only. most importantly find a good doctor that works with you, you will see him or her more than your family, so make sure it is someone you can have a good relationship with. good luck and stay tough!
I have heard of IBD causing eye inflammation. I’ve never had mouth ulcers though- just severe gastritis with lots of throwing up and swallowing problems. I get thrush with most of my flares.
The treatments for UC and Crohn’s are the same so I’m not sure what your doctor means about treating you just for UC. Doctors are so clueless anyway on the disease and how it works- medications are kind of a guessing game.