I’m an artistic type person. I’m a photographer and makeup artist. I am now approaching fifty years old. I’m from Northern California. I don’t know if it makes a difference or if there’s a correlation but I suffered abuse as a child. Some studies indicate that it can lead to chronic illness. I have other health problems beyond UC that I manage mostly using holistic/alternative measures and diet. I’m gluten and dairy free. I don’t drink soda or eat fast or processed foods. I believe diet makes a huge difference in how well I’m doing regarding my UC management but I also rely on the pharmaceutical drugs- Lialda and CortiFoam.
Current Symptoms (Even though Doctor Says I don’t Have UC): Cramping, skinny stools, mucous and fatigue.
Amy’s Story
I need help.
Eight years ago I was diagnosed with ulcerative colitis eleven inches into my colon. I saw the photos after my procedure which showed hundreds, if not thousands of bleeding ulcers. I had all of the typical symptoms- Bleeding, pus, mucous, cramping, urgency, diarrhea, skinny stools, fatigue and nausea. I even had joint pain. I was suffering a lot back then.
I finally had another colonoscopy last week and the results showed that I do not have UC?!?!
While I’m happy to know that things are looking good inside of me, I’m freaked out about not getting the treatment I need when I STILL HAVE PAINFUL FLARES. I’m trying to get a hold of the records from my first doctor to show my new doctor but I haven’t been able to get them yet. I’m working on that.
My new doctor told me I should be happy to be UC free. I’m like… I HAVE COLITIS!
I still get cramping, urgency, mucous, and super skinny stools and diarrhea when I’m in a flare. I have flares at least six times a year or more.
I don’t know what to do.
Should I just stop taking my meds and let my flare get severe and then show my new doctor when I’m at my worst? I eat super clean. I’m gluten and dairy free. I eat mostly organic and gmo free foods. I don’t drink soda or eat fast or processed foods. I take responsibility for how well I’m doing but I also feel like I’ve shot myself in the foot. Without my medications (Lialda and CortiFoam) I’d never be able to function during a flare. I don’t even know if I’d be able to get my flare under control without the CortiFoam, especially. Has this happened to anyone else? I welcome any and all advice. Thanks.
Medications & Treatment History: I have used prednisone in the past but it gave me an allergic reaction in the form of a horrible rash all over my body. I also tried Colocort enema and it put me into a neurological flare so I couldn’t continue taking that medication. The only medications I have used with success are Lialda and CortiFoam. The CortiFoam works like magic for me to get my flares under control. I manage my UC mostly with diet. I’m gluten and dairy free for ten years and I never eat processed or fast foods. No soda and no refined sugar for me. I take supplements and I try to focus on eating more alkaline foods. It really seems to help me.
written by Amy M
submitted in the colitis venting area
I’m a high strung, type A personality. I’m also a perfectionist. Additionally I can be fun loving and light hearted with a positive attitude. I love to laugh and I have a great sense of humor.
If your new doctor is willing to keep prescribing your meds I’d keep taking them. Stopping the meds could send you into a severe flare which may be more difficult to treat. How does your new doctor explain all of this? Surely he doesn’t think you are cured. A previous positive colonoscopy with biopsies and 8 years of symptoms don’t lie. Keep trying to get your old records. Try the actual facility where the procedure was done, as they may have records also. I’d also find another doctor who’s very knowledgeable about IBD for another opinion.
Ugh- I am sure this is frustrating! I would NOT stop taking the meds as the risks of those are lower than if you triggered a massive flare by stopping. Is it possible that your UC is in remission but you are currently dealing with IBS? That has been my story and it’s tough sometimes to figure out what kind of flare I’m dealing with.
Psyllium and chia in my smoothies have helped me a lot in slowing things down and adding bulk. What other supplements are you taking? Hope you feel better soon- this is a great place for support.
PS- almost 50?? That HAS to be a typo!
Get both sets of records and colonoscopy images. Until you see for yourself you cant rule out that your new Doc isnt telling you the truth. How many of us have been seen as having psychosomatic symptoms ? Ive seen records where Drs automatically regard any bladder or bowel problems as psychiatric. Its the comment from your Dr thats making me wonder. Saying you should be glad..mmm…
If you still have the physical symptoms then somethings wrong here.
Make a FOI request for all your records.
I to had a colonoscopy in February and was told no sign of the disease. I also eat clean and take supplements. I had to switch back to asacol because insurance won’t cover lialda . I use mesalamine enamas also. I don’t feel it’s my eating that got me there because I take max asacol and do an enema every night. If I try to reduce any of it I go into a flare. I know exactly how you feel.
Hi Amy,
I don’t have a guess on the test results, but as far as the symptoms, have you ruled out endometriosis??? Endometriosis is commonly misdiagnosed as IBS, so misdiagnosing as IBD is not too far of a stretch. Endometriosis flares share symptoms with IBD flare-ups… I would check with an endometriosis knowledgeable OB-GYN (which is NOT all OB-GYNs.
Hugs!!!
Hi Amy,
So sorry for what you are going through! I was never told I didn’t have UC- but one time when I was having a flare and had a colonoscopy my GI told me that I wasn’t having a flare and he didn’t see anything. Totally freaked me out! I knew I was in a flare- pain, cat poop (skinny stools) and blood. It made me totally second guess myself and my reactions to my symptoms-BUT a week later when I went for my follow up appointment the biopsies had come back and it showed that I had micro ulcerations, and my doctor apologized. I’ll never forget how justified I felt after those results.
Did the doctor take biopsies on your most recent colonoscopy? I would for sure get those records from your last GI doctor! Our meds are very expensive and without a diagnosis you won’t be covered, and as we all know- this is a chronic illness- it just go away.
Good luck to you and let us know what’s going on-
Wendy
Hello Wendy. Yes my doctor took lots of biopsies and they didn’t show signs of UC, even at a microscopic level. It’s so baffling to me. If I could post pictures of my before and after scopes I would. It was a bloody ulcerated mess and now I have a perfect looking colon. I didn’t even have any polyps.
Yes your story is similar to mine. I was able to have my primary care physician prescribe me my medications luckily. He remembers how bad I was and he told me to never go back to this new gastroenterologist again.
Hi Amy
I do know that after 10 years of major stress in my life including losing my first son at. 7 years & toxic relationships including domestic abuse that my UC came on straight after the domestic abuse started . My consultant at the time , believed the UC had been brought on by these stresses added up .
Wishing you a solution .
Best wishes
Sally
I’m sorry for your suffering. My story is similar to your’s but without the flares. My colitis is just gone (for now, forever…who knows?) Since day one of my illness, I have sensed that there was something psychosomatic about it. I worked hard to find the right medical treatment that ultimately put me on Humira which led to a terrible case of psoriasis. After a year of Humira and a good 6 months of remission of the UC, I said “no more” to the psoriasis and went off the Humira. Now I prophylactically take 4 mesalamine pills each night. Looking back, there are several possibilities as to what did the trick – eating clean, low carb and following NO refined sugar diet; the Humira treatment; OR the hypnosis protocol/therapy that I underwent after hearing about a provider in NY while while watching the evening news (Laurie Keefer, Mt. Sinai Hospital). I have a sense that getting my stress or even more importantly my nerves under control was critical to my healing. I’m a nail biter (literally), and I’m quite conscious of the fact that I don’t have well developed coping mechanisms. Growing up in a family of 5 children with a mother suffering from untreated, severe anxiety wreaked havoc on my internalizing self. All of that said, I am spending my adult years trying to learn how to release many years of stress that have been eating my insides (again, literally). If you want to tackle this illness, then tackle your brain/emotions. Therapy is a wonderful form of self medication. Good luck to you!
I am also about to be 50 and have had UC since I was 15. I’ve been in remission for over 10 years now, thanks to a combo of methotrexate, then Humira and Lialda/colazol. I would find another doctor ASAP!! I had a similar experience about 20 years ago when a new doctor tried to tell me after a scope that I didn’t have UC. He thought I had celiac disease(based on a blood test), had me change my diet and lifestyle completely and didn’t believe that I was lactose intolerant (until I got extremely sick during the testing)! I got so much worse and finally had the sense to find another doctor who has literally changed my life!!!
Please find a new doctor!!! It definitely sounds as though you are still in a flare, mainly because of the mucous. I also have IBS, so I still have some urgency and cramping at times, but as long as I’m not passing blood or mucous, I know it’s not a UC flare. I take Bentyl to help with the IBS.
I hope you find a new doctor soon!!!
You didn’t explain how the doctor addressed your existing symptoms. I don’t know why you left your first doctor, but you need to find another doctor. MD behind their name doesn’t mean they are competent. Also, why you need to show your doctor your prior record before he believes you is beyond me. This is a no brainer….find a doctor you are comfortable with who recognizes the symptoms you have and treats them appropriately. Stopping your meds to prove something to a doctor????? Are you kidding me? Why you are asking people in this forum is odd. This is something you discuss with your doctor. Common sense prevails….see another doctor. How do you not realize this?
I did explain my doctor situation but apparently you didn’t read all of what I wrote. The gastro that initially diagnosed me moved out of the area and also he no longer accepts my type of health insurance so seeing him is no longer an option. My new doctor completely ignored my current symptoms because he said my colonoscopy showed no current issues. I already have an appointment with a new gastroenterologist and I’m asking advice on this forum for very obvious reasons… to see if anyone else has had the same thing happen to them. I thought that was obvious. Lastly, the doctor in question would not refill any of my prescriptions so stopping my meds is out of my control because now I will have no choice unless I get refills by someone new. This same doctor told me to come in when I have a flare to prove to him that I’m having a flare. He wants me to get sick again to prove it to him. Unbelievable. And why wouldn’t I ask for advice on this forum? Isn’t that what this place is for??
How did the new doctor determine no disease? Did the new doctor do biopsies?
Yes of course. He took a bunch of them and they showed no signs of the disease.
I’m not a doctor but am in the medical field and don’t believe for a second you don’t have UC. I have had UC and IBS for 48 yrs. I know the highs and lows. I believe you clearly eat so well and take care of yourself that you’re fortunate to have healed so well and to have obtained remission. I don’t believe for a second that you never had UC. Any reputable GI doctor would adjust medications to prevent future flares and treat you when and if a flare does occur. No doctor makes a diagnosis like that especially with biopsies lightly. And doctors can make the diagnosis without biopsies. Get another doctor if current MD not willing to treat you to prevent future flares. If not future flares will be more offten and more difficult to get under control. Good luck.
Thank you. I have an appointment with a new gastroenterologist in August.
I would try SLOWLY cutting back on meds, as that was what i did. My meds are pills only, no shot type. Went from 3 x3 daily Sulfusalzadine (spell check ) 3 x a day Mercaptoprine. Now im 1 a day of each and doing very well.
Always consult your doctor before doing it.
I’m a bit confused by your story. My experience with UC has been that my doctor requires a colonoscopy, once a year if meds aren’t controlling things, and no less then every 2 years when in remission. My doctor wouldn’t prescribe medication without this level of compliance on my part. So will this new doctor prescribe medication to you in light of the new results? I wonder if you might just need to find another GI, do your research and find someone that you can feel safe with and confident in their abilities. For me finding the right doctor has been essential.You should not have to be in a flare for a proper diagnosis so I would keep taking your meds if you have access to them.
I refused further colonoscopies after my initial diagnosis because I was doing so well that I didn’t think it necessary. My doctors nurse practitioner refilled my prescriptions until recently when she insisted I get a new gastroenterologist because mine moved away. I guess some doctors don’t insist on yearly colonoscopies. They’re all different in that regard.
I have suffered with UC for 10 years to the point that they wanted to remove my colon three years ago. I also had a doctor insist that I didn’t have UC many years ago so I know that there are incompetent gastroenterologists out there.
For me, the difference has been diet. You are on the right track but you need to go farther. The problem is sugar and carbs plus certain inflammatory foods, such as soy. I have been religiously following the SCD diet for three years and today my colon (which was affected along it’s full length) is completely clear. I haven’t had a flare for more than a year.
Good luck.
I am so incredibly knowledgeable about food that I could literally be a nutritionist. I know that my diet is what got me into remission. I never eat gluten or dairy but I do fine with soy. I was tested for food allergies and soy is okay for me. I also did the SCD for the first year after my diagnosis and I believe in that diet. Luckily now I can eat salads and tons of fiber and I have literally no issues with it. I do Ketogenic diet so I know all about the dangers of refined sugar and refined carbohydrates. Thanks for your advice though.
Amy. Question? Do you make and eat your own yogurt daily? Instructions in Adams book or breaking the vicious cycle. I too ate clean and still had problems until I introduced the homemade yogurt
No but I’m interested in making my own kiefer. I’ve read great things about it. Apparently kiefer isn’t considered dairy… or so I’ve read. Do you know anything about that?
Amy, that sounds frustrating and scary. I have a friend who has not been diagnosed with UC but who has some of the same symptoms. He is managing his issues with a low histamine diet. I also know people who have found success with a ketogenic diet.
I have had success managing my symptoms with diet too. I’m essentially eating paleo but now and then I have rice. I’ve found that even with a good diet, emotional stress can put me over the top.
Praying for you and for complete restoration and health. You are not alone. ♥️
Lialda made my daughter’s UC worse. As soon as we (not the doctor) figured out the lialda was the culprit, she immediately stopped taking it and symptoms drastically improved. Just a thought……..maybe the lialda is causing your “flares”?
You should report this doctor to the medical board. Once you have ulcerative colitis, you always have it. It can go into remission for years. Lialda is the best medication for ulcerative proctitis and usually can keep your disease in remission, though you may have times when it rears its ugly head with a little bit of mucus, urgency, diarrhea, etc. I was told to take four Lialda a day; but I take only one a day to keep my disease at Bay. This doctor should know that this is a lifelong disease that you must manage. I suggest that you go to another doctor. If you happen to be in the Los Angeles or Southern California area, I recommend Carlos Saad. I had been going to another doctor who had me on Colazal for many years, and I was in and out of remission. It was the wrong medication. Dr. Saad straightened it out. But if you are not in California, you must find someone who understands the disease. I think you also might consider getting a medical malpractice attorney.
My new gastro said that UC can be seen at a microscopic level from the biopsies, even when people with UC are in remission. He saw my records from when I was diagnosed but that didn’t impress him. He said that I was probably misdiagnosed the first time (I wasn’t) and that since he can’t see the disease then I don’t have it. Maybe I should sue him. I’m mad enough to do it!
Hi Amy, I agree with our UC companions above regarding finding a new doctor. You will feel better when the doctor is listening to your symptoms and not just your test results. I used to tell a doc I’m in a flare, do blood work and no flare would show up which would lead to a much needed colonoscopy to prove I was right!
You are in California? Have you considered medical cannabis? Cbd + thc? I’m in pA and it was passed a couple months ago and thank goodness bc I was given the only choice to a normal life was Humira which i have denied and will continue to deny. The medical cannabis in 2 1/2 months had done more for me than prednisone or anything else out there. It’s safe to use. I call it my magic pill. I am not as strict anymore with gluten free and dairy free but I pay attention to what I eat, take many supplements and vitamins every day. I work with. GI, holistic doc, and a functional doc. Best part, is I did all the research myself and become a patient for all 3. My new GI respects my decision and listens to my concerns and works around my preferences. Ultimately it’s up to us. I’m in this position bc I just listened to a doc and took antibiotics for 2 years for my acne. Hating the way I looked on the outside to now suffer invisibly on the inside. I suggest doing some research on the cannabis world we now have access too. Especially if the meds are not going to be prescribed. I take asacol and my medical cannabis just no humira! Plan is for no more meds in 2019. If you are under any stress or feel your mind is always spinning and thinking “what if”, read the Power Of Now. 2 chapters in and I feel like I have a new mind set. Good luck !
Hi Nasima, thank you for brining CBD oil. Do you mind yo share your functional doctors names? I am in NY, and willing yo travel to PA. I believe that CBD could help. I’m on remicaid and planning to stop it
I need functional doctors who will help me to transition. Good luck!!!
Make a stool test (Fecal calprotectin).
I’m neither a dr nor a UC patient (my daughter has UC), but I don’t think stopping your meds to allow your symtoms to get worse to show your dr that you are flaring is a good idea.
I know that diagnostics/testing doesn’t always show what’s going on inside. My daughter had normal labs and normal colonoscopy (with 9 areas biopsied) results while she was having most all of the symptoms you described.
The dr was planning to prescribe medication, despite the lack of diagnostic results to see if her symptoms would respond. She had a second opinion colonoscopy about a month later, which showed clear signs of ulceration.
Wishing you all the best in keeping your UC at bay.
I’m not sure exactly what your doctor told you. I had a “clean colonoscopy,” that said something like “No IBD.” I asked my doctor: “So does that mean I don’t have UC anymore?” And she said, “No. It just means that the inflammation is at bay. I don’t know why the labs indicate it like that on the lab report.” Maybe that’s what’s going on with you, too.
Amy, did the doctor take a biopsy? When I get a colonoscopy, everything looks normal, but when they biopsy the tissue, it shows I have moderate ulcerative colitis. Do you know if your doctor took biopsies of the tissue?
I am 58 years old and have been living with UC for more than 15 years. For several years it was so bad that I developed fistulas that made their way to the outside. Very painful and required 5 full-blown surgeries to fix.
I was a year on Prednisone then about 7 years on Mercaptipurine (6MP) and massive quantities of Asacol. All very expensive and very poisonous.
For the past 3 years I have been in remission–without taking any pharmacuticals. In addition, I mostly feel ok, but do have flares that can last a day or two, or as long as several weeks. But, overall a huge improvement compared to the daily torture of the previous 12 years.
I attribute the remission to the following:
1. Adequate and regular sleep
2. Regular daily and somewhat strenuous exercise (I run each morning, taking one day off a week)
3. Good diet
4. Little or no alcohol
5. Last but not least: Medical Cannabis
Medical Cannabis has been nothing short of a miracle for me. There was a lot of trial and error in the beginning, but I now have it down to the proverbial “science.” I take only a pinhead of RSO Oil in the morning with breakfast, again at lunch, and then an entirely different strain about 30 minutes before bed time.
My work requires that I be on and alert. The cannabis does not in any way interfere because the ratio of CBD to THC is about 3:1 and I am taking it in small doses, so no “high” is involved. A gram lasts me about 3 weeks. I know exactly what I am taking because the dispensary I patronize grows, processes, tests for impurities, and packages everything they sell, all of it locally. So, the consumer knows exactly what they’re getting. No guess work. No wondering about providence.
Cannabinoids have produced for me other wonderful collateral benefits: Less pain, less gas, less inflammation throughout my body. I’m a runner so I notice.
I used to spend thousands and thousands of dollars a year out-of-pocket for traditional medications. Now I only spend between $800 and $1,000 for an entire year. And, it’s all natural.
Try it out. It just might change your life. Especially there in CA. Shop around to a dozen dispensaries and interview them. Pick one that is professional and educationally-based in their business philosophy. They will understand. They can help you with strains, doses, methodologies for how to take the medicine, etc.
What do you have to lose? I wish you well in your endeavor.
It is very good news to hear that you do not have colitis. I also am gluten free and follow a very restrictive diet but still have left-sided colitis similar to your description . I also had a similar reaction to Prednisone. The other drugs that you mentioned were actually contributing to my colitis flares (allergic reaction) so I stopped taken them. I am in no way suggesting that you consider it since you are colitis-free. Perhaps you might research information about fecal transplants or some other alternative treatment to diminish your symptoms or consult with a nutritionist to be tested for any food allergies that might be causing the flares to persist? My body has always resisted drugs. I also have the support of a spiritual advisor who has contributed to my healing process. Best of luck to you!
Try CBD oil (4%) – a few drops under the tongue 2x per day. Stopped a nasty flare in its tracks for me. It was a miracle! The drugs weren’t touching it (mesalamine, sulfasalazine), and there was NO WAY I was going to go back on steroids or take Remicade.
What a roller coaster! It is worth a fight to get your records and the images taken during your colonoscopy. If you must go to your last doctor and sit in his office until he hands them over, then it’s worth it.
Hang in there. And feel better soon!
What a roller coaster! It is worth a fight to get your records and the images taken during your colonoscopy. If you must go to your last doctor and sit in the waiting room until he hands them over, then it’s worth it. (I had to do this. With two toddlers under three.)
Hang in there. And feel better soon!
I am (from India) & an ulcerative colitis patient myself since 2011. Like most of you, I too have no clues regarding how it came about or how & when it will go (if it ever goes!!).
But these years of suffering, reading & sharing about the disease and self observation has taught me few things that we all need to try and do:
1. Control your stress (if it is possible)
2. Take your UC medicines & supplements
(Flaring or in remission)
3. Avoid the food that gives you trouble (diary)
4. Live for the moment & be happy & relaxed
(follow things that give you joy)
5. Sleep well
6. Never lose hope!!
It’s really frustrating,,,,, Pls get it rechecked by another doc to have may be 2nd opinion ,,,Pls do pray and stay calm,,,, God will help you,,,, pay lot of gratitude to God for having so many other good things,,, you will start getting better soon.
Hi Amy, thanks for sharing… I’ve had UC since 2001 and have had colonoscopies since then which have shown “No active colitis”, in other words , i was in remission during those colonoscopies. My doc never told me that i was cured or colitis free and I’ve pretty much always been on some maintenance medication (and stronger meds when a flare comes on). L -Glutamine and probiotics help me out a lot & clean diet… I would get another opinion/new doctor. You know your body best…. Good luck!
I would strongly suggest to find a functional medicine doctor. They will test you and find the root problem and then treat accordingly.
Has your doctor check your pancreatic enzyme levels? Sometimes UC can lead to pancreatic insufficiency which results in some of the symptoms you are describing. This happened to me. Lialda can also cause pancreatitis in some users.
Hi!!!
I’m glad your last colonoscopy went well. But it means you are in remission. Not UC free. The same happened to me. I never stopped taking my 4 Lialda and my 3 Imuran, which I used to take 4.
Diet and stress play a big role in the control of UC.