A Long Journey

Introduction to Sharon:

I am a soon to be 48 year old female with an adult daughter and a ten year old son. I work full time in a “regular job”, work part time for my husbands business and am trying to get my artistic aspirations out of my head and in physical form. I also enjoying camping, bike riding, swimming and water aerobics and martial arts. In other words a normal but very busy, often stressful life.

My Symptoms:

Currently experiencing a mild flare but as yet undetermined if the flare is going to be bad. Moderate bleeding, and gas and increasing trips to the bathroom.

My Story:

I have lived with UC or in my case ulcerative proctitis for 27 years. I was originally diagnosed when I was pregnant and at the time the doctor told me that I had a “mild iritation of the colon” and it was nothing to worry about and the medication to treat was expensive so the best thing to do was to monitor my diet. For over ten years I walked or ran as the case may be through life with the knowledge of knowing where every bathroom in the city was located. Although my symptons worsened over time I didn’t have many of the more painful issues of my fellow UC sufferers and thought what I had was just something I had to live with.

Upon a visit to my general surgeon for a separate issue I was informed by the surgeon that I needed to get my UC under control and either demand better treatment from my gastroenterologist or, better yet, change doctors. Following her advise, I changed doctors. The next 15 years were a roller coaster of symptoms, meds, treatments, etc., etc. I have taken Pentasa, Lialda, Rowasa and just about any other accepted treatment recommended by my doctor as a means to get my condition under control. Fortunately, I have been relatively pain free (knock on wood) and while the other symptons of UC such as frequent trips to the bathroom and gas and bloating were bothersome I still managed to convince myself I didn’t have a chronic medical condition.

Over the years I have altered my diet, lived what I considered to be a healthy lifestyle and did what I thought I needed to be doing to be on top of my disease. I taught water aerobics, flirted with different exercises on a regular basis and ate grilled and “healthy” foods all the while never really sympton free with an occasional flare up but always the blood and mucous in the stool and the aching joints which for me has been the worst part of my condition. I went back to my gastroenterologist who, like I said, had tried most of the medications on me. Again he wanted me on steroids which I abhor and refuse to take due to the mental side affects which was mainly depression. He changed me from Pentasa to Lialda. I convinced myself the Lialda was helping and I believe it did for a while because if I went off meds for even a few days I would revert as if I never had taken medication. Then a year ago my symptons once again got worse in addition to the joint pain i ncreasing.

I would have flare ups of the joints until I couldn’t use the appendage it affected; my wrist would hurt so bad that I couldn’t pick up a cup. My hip would hurt to the point that I couldn’t sleep on that side. There was no outward sign of any problem such as redness or swolleness and my gastro dismissed the joint issues as part of UC. My general MD agreed with me that the joint paint seemed to be related to the UC so since the medications recommended for joint pain affected the UC negatively I tried physical therapy and again different exercises such as yoga and gentle water therapy. It helped some but as soon as I gained relief in one area of my body, another would start hurting. The joint pain flare ups would last anywere from 4 weeks to 6 months.

Last November I had a colonoscopy and my UC had changed from mild to moderate. I didn’t need a procedure to tell me that. By this time I am in tune with my body enough to realize every little change. My gastro pushed for me to start with Humira or Remicade. I don’t dismiss any treatment for UC if it works and don’t recommend that anyone not do a treatment because it didn’t work for someone else. None of the traditional treatments were working (or worked for long) and I rebelled at the thought of intravenous medications. Without doctor knowledge I didn’t go back on medications after the colonoscopy. Unlike every other time I had gone off my meds I did not have a flare up. I used the next couple of weeks to investigate alternative treatments and to decide on a course of action for myself.

In January of this year I changed my diet. Not only did I stop eating the foods that I knew would aggravate my UC but really for the first time I monitored what each food did to my digestive system. I found that most processed foods have nothing of nutritional of value in them at all and that most have preservatives that aggravate my UC. Anything that comes in a box and reads “just heat and serve” will serve up a good old case of diarhea and gas also. I stopped eating cookies, cakes, candy, anything sugary or sweet basically. My massage therapist had once told me that sugar was worse and more addictive than cocaine and I believe her. If you read the nutritional info on most foods there is a certain amount of sugar in everything you eat. I cut back on sugars and my joint pain began to lessen. I am a Southern gal so can’t quite give up sweet tea but found some alternatives for the traditional sugary sweet tea to which I was addicted.

Never having been a huge meat eater I avoid red meats and eat only grilled or roasted meats, fresh or veggies from frozen that I have prepared and try to avoid greasy foods. I found that most oils used in fast food aggravates my system as does anything with MSG as in my favorite salad dressings and glutens. I cook with olive oil and recently began using sunflower oil which doesn’t seem to have the side effects of canola or vegetable oils. Also dairy and red sauces along with some breads were deleted from my diet. Plain soy milk was a good alternative to regular dairy. Although I have not fully investigated nor am practicing abstinence from any of the above, by limiting my intake and monitoring my eating habts my UC symptons have lessened considerably. I have lost 8 pounds in 8 months which I have never been able to do in the past even with UC symptons and exercising 4-6 days a week. While I wasn’t overweight to begin with I feel much better physically than I did even a year ago.

Next in my regimen to gain control over UC has been the addition of herbs and different vitamins and supplements. I encourage anyone thinking of trying alternative treatments to do your research. My own is ongoing and I always, always start out with low dosage of any supplement I take just so I can gauge how my body will react. I have tried plant supplements, vitamin B12, D, E, C, boswellia, bromelain, aloe juice, etc, etc. Again my very wise massage therapist recommended turmeric and it has been the one major supplement that I can honestly say lessened some of my symptons immediately and continue to work. For almost eight months I have had regular bowel movements and the mucous and blood became almost nonexistent to the point that I was actually surprised a couple weeks ago when I saw some traces of blood.

Even with the multi-faceted approach to my disease I am in the beginnings of a flare up. Once again I have renewed my mission to get control and am investigating options that will help. I have just began the vitamin E enemas and even though it is early yet, I had immediate sympton relief so will continue with this line of treatment for a while in addition to the other things I have been doing.

As I said in the beginning I have 27 years of ups and downs with my disease and I am sure will continue to do so. The hardest thing for me in all this time is reconciling to the fact I have a disease. It is also both frustrating and depressing that there is a lack of understanding in the general population, our families, and even the educated doctors. If there is one thing I have learned about ulcerative colitis is that there is no one cure all. There is also not a one pill to relieve the symptons nor will there be a one type of treatment for the cure when it is finally found. My thinking has always been this is an auto immune disease and and therefore affects everything in my body. I believe UC is the reason for most if not all my physical ailments including migraines, vision changes, skin rashes and even high cholesterol. All my doctors (gynecologist, breast surgeon, gastroenterologist, eye doctor, general MD) disagree but my reasoning is as simiple really. If yo ur body doesn’t process food like it should and expels multiple times a day how can you retain vital nutrients and vitamins you need? How can your health not be affected in all other areas of your body? I think this reasoning also supports why different foods with preservatives, msg, glutens, etc totally disrupt the digestive system for folks with UC.

Again, I reiterate, if you are following a traditional method of controlling your disease please do not stop your treatments based on anything I have written. Do what works for you, do your research, ask questions, but don’t accept a medication or treatment course without knowing what you are taking or doing. I learned the hard way I need to be proactive and even if I am fighting an uphill battle it won’t have been because I didn’t try.

Where I’d like to be in 1 year:

Sympton free with a clear colonoscopy.

Colitis Medications:

No one medication fixed it all. Most worked for a while or not at all and some had worse side affects that the disease itself.

written by Sharon

submitted in the colitis venting area




gas

One Response to A Long Journey

  1. Bev September 10, 2012 at 12:50 pm #

    Hi Sharon,

    I so agree about the medication symptoms being worse than the disease itself. The meds made me feel much worse, and started to blur what were UC symptoms and what were medication side effects. I think alot of we UCers fall into this. I am not on any meds any more, after being on them for 13 years. They never work for very long anyway, and are not a cure, but simply mask the symptoms, and carry dangerous and sometimes permanent side effects.

    I am in remission with probiotics, L-glutamine, and astaxanthin. I feel 100%. I will never take meds again.

    BTW, I have pancolitis, which is total colon involvement…and I don’t feel like I have any disease at all any more!!

    Cheers, and thanks for the great story! Welcome!

    Bev:)

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