Just diagnosed with UC, looking for answers, support

Hello,

I came across this forum as I was doing good searches on UC. I just had my first colonoscopy yesterday because of rectal bleeding and the initial impressions from the Dr. was that he is confident I have UC but awaiting confirmation from biopsies and I have a follow-up appointment schedule for next Friday. They've started me on Lialda, 4 pills each morning, every day and to be honest I did not realize how serious this was until I saw the price of the medicine ($1453 if I didn't have insurance for 160 capsulses! $80 with my insurance). Then I began to place all the pieces together. He said I have mild to moderate symptoms and now, I think, I am beginning to realize that I've been having this problem for quite sometime without realizing it, possibly 2 years.

My story begins in April 2010 when I was about 330 lbs. I decided to take control of my life and began the process of extensive exercise and diet change. I began exercising 6 times a week extensively, eating an incredibly healthy diet and within the first 11 weeks, I had already lost about 100 lbs! During this time, I started eating a lot of high fiber foods seeing how it is recommended so frequently for healthy diets. I began to have loose stool consistently off and on. I now am thinking I could have falsely assumed that it was just from all the fiber... or maybe the high fiber diet eventually brought the onset of this condition?? But I've had loose stool off and on for the past 2 years but never thought much of it because I just assumed it was from the fiber or my diet. Bowel movements of 3 times a day were just normal too me some weeks over the past 2 years.

Well, 5 weeks ago I started developing severe gas pains and rectal bleeding. Again, I maintained a high fiber diet as that was what I believed to a contributing factor to my weight-loss and the ability to maintain the weight-loss. So I never considered the loose stool as anything else. The bleeding is what concerned me. My family doctor referred me to a specialist for a colonoscopy and that took place yesterday and that is when the specialist said he believes I have UC.

I don't know what I am looking for from this post but in the past I used to be very active in forums for large online video games, such as World of Warcraft, in my younger days (prior to losing almost a 165 lbs). Over the past year though I have put weight back on due to lack of consistent exercise (I broke both wrists in a bicycle accident early summer) and am now up to about 220 lbs from my low of 165 lbs last march. It should be fair to assume also that I probably had started to develop anorexia during the end of my weight-loss as I always felt fat because of the excess skin and just thought another 5 lbs would make me feel and look better. My girlfriend has been tremendous support for helping me conquer this struggle and conquer anorexia is naturally going to lead to some weight gain, but not as much as I have allowed to happen. Now I am scared. I am scared mostly for her. I am 31, she is 24. I want to live a long and healthy life with her. We are highly involved in my church as that is where we meet 3 years ago, and I just want to do everything I can to be there for her...

All of this is such a shock to me. Up until this point, I thought I was invincible. Until my broken wrists, I've never broke a bone. Never have had surgery... I generally have not visited the doctor for most of my life, even when I was so overweight for about 8 years...

This is scary, but reading posts here also give me hope. Hope for remission. Hope for a cure if so required down the road (by removal of my colon and rectum). Is there any advice you can give a newbie? Any support, comments, or recommendations?

I thank you for your time and allowing me to share this. Just sharing makes me feel better.

Antibiotics is a good question. Even though many people believe they got UC due to an unhealthy diet there are those such as yourself that have come here after changing their diet to a healthy one. This can be a very weird disease as smokers seem to be more immune to it and smokers who have quit seem to come down with UC at a higher rate than the average population. There are litterally thousands, if not more, of gut bacteria living in a perfect balance and when you do something to throw that balance off, you can come down with UC. Antibiotics can be a big factor in effecting this balance also. All I can say is read, read, read.

Hi. I am sorry to hear about your diagnosis. But I am glad you are on the road to getting an answer. Many of us suffer for a very long time before we get an answer. Lialda is a great treatment. I second the notion of staying with the meds even if you feel better. Finding the right med combination may be easy or it could take time. Be patient. Good luck.

Sorry your going through this.

If i were you id ask about rectal meds. 

If you resurch on here you'll see many of us have had good results from a combination using oral and rectal meds.

good luch

C_G_K said...
Did you take antibiotics prior to getting UC symptoms? A lot of us got sick after a round of broad spectrum antibiotics.

Hello C_G_K, first thank you for taking the time to read my post and respond. It is definitely appreciated. I have used very little prescribed medication over the past 10 years. I had strep a year ago but that about covers the past 7 years besides annual flu shots and routine physicals.

garylouisville said...
Antibiotics is a good question. Even though many people believe they got UC due to an unhealthy diet there are those such as yourself that have come here after changing their diet to a healthy one. This can be a very weird disease as smokers seem to be more immune to it and smokers who have quit seem to come down with UC at a higher rate than the average population. There are litterally thousands, if not more, of gut bacteria living in a perfect balance and when you do something to throw that balance off, you can come down with UC. Antibiotics can be a big factor in effecting this balance also. All I can say is read, read, read.

Thank you for your reply garylouisville, again so appreciated. This gut bacteria is very interesting to think about and something I will be reflect on with time. I wanted to add that due to religious beliefs I have never drank alcohol, smoked, done any form of illegal drugs, etc. However, for about 8 years I ate just about every unhealthy thing under the sun =( I will continue to read and definitely appreciate your time.

Pluot said...
Hi Phil,
Have you noticed any improvement yet from the Lialda?
What I really would impress upon you is that once you find a treatment that works for you, STICK WITH IT. If it turns out that Lialda works for you, take it forever. Many happy healthy people take daily medication for their entire lives. If it ain't broke, don't fix it!!
Beyond that, I would just say: denial is not an option. Until something like this hits us I think we all feel a little invincible, but the truth is the human body is not perfect and there are a bajillion things, little and big, that can go wrong. Luckily we have modern medicine and way more options than ever before for improving our quality of life even when things go wrong. If you can accept your diagnosis and commit to getting the treatment you need, you will be fine :)

Hello Pluot, I just wanted to say thank you soooo much for your encouraging message! I think it is to early for me to tell on the Liadla, as this morning is only my second day taking it. I want to assure that your second piece of advice with regards to if it ain’t broke, don’t fix it!! That I fully heartedly support that!! I have a personal connection to this disease that I have not yet revealed. My incredibly close aunt was diagnosed with UC in the early 90s in her early 20s. She later developed Crohn’s after using the recalled acutane drug for severe acne. She was always very healthy, went to the gym 3 days a week most of her life, so when she developed UC it really caught my entire family by surprise. She passed away 3.5 years ago, at only 44 due to liver, colon, and stomach cancer. It’s hard to explain her entire situation, but she always hoped for a cure other than a bag on her side, and by the time she finally was willing to go forward with the permanent procedure that said the cancer had spread and that she was no longer healthy enough to undergo the procedure. My sister and I was very very close to her because of an early childhood divorce and living away from our mother, she stepped in a lot to help us as a motherly figure. She was very very dear to us and I remember her struggles so clearly. I did not even realize she had UC, I always just remembered the Crohn’s portion, forgetting that was it when it first started. When I picked up the medication, opened up the bag, saw the pills, I almost had a heart attack. As in that moment, I remembered those to be the exact pills I saw my aunt take 4 a day for 20 years. I will be committed to following through with any advice the doctor provides me with in my fight to maintain a long and healthy life no matter what may be required down the road. Thank you again for your supportive message. I look forward to future communication.

Teddtlove said...
Hi. I am sorry to hear about your diagnosis. But I am glad you are on the road to getting an answer. Many of us suffer for a very long time before we get an answer. Lialda is a great treatment. I second the notion of staying with the meds even if you feel better. Finding the right med combination may be easy or it could take time. Be patient. Good luck.

Thank you Teddtlove, I will do that and I will be patient. I will look forward to this community and building relationships with the support network each of you have built here. Thank you for your response, it is much appreciated!

BobbyzGirl said...
Hi Phil, I posted "Any thing better than Ensure", on this forum, and your story and my husband's story are pretty similar. He also was heavy, went to WW, started at 309, goal of 200, hit his goal then got undermined with this flare of UC the beginning of November. He is now at 167 and I'm trying everything I can think of to get his weight back up. Thus, my post. Then I saw your post.

Just wanted to say that. Hang in there.

I'm new here too, but I'm here for him. For me too, I guess. This is a support group for the caretakers as well as the people with the UC, at least I truly hope so. I have found so much good info so far from this forum, and I'm really thankful for that.

Thanks.

Thank you for your comment BobbyzGirl. I will be praying for your husband and your support. I will be sure to read your post and I know things will work out for you. I have a relative by marriage with UC who had his colon removed about 10 years ago now. While I know that is extreme, he is living a very healthy life and does not regret it in the least. I do not supposed to know what downside of that procedure, but knowing others who are surviving and living healthy productive lives, albeit through a struggle in the beginning seems to be quite tough, gives me and I am sure you a lot of hope. I look forward to future conversations.

Labyrinth said...
Sorry your going through this.If i were you id ask about rectal meds.

If you resurch on here you'll see many of us have had good results from a combination using oral and rectal meds. good luch

Thank you Labyrinth. I was given a prescription for Rowasa along with Lialda but did not fill it. The doctor who performed the colonoscopy said if I want more immediate results to use it, but otherwise just stick with the Lialda and I should see something in about a week’s time. I have my first appoint this coming Friday with the specialist who will be my permanent gastro doctor to really discuss what is going on and the biopsies taken during the procedure that should confirm UC. I will look to understand it more then as for right now I have chosen to stick with Lialda as this flare up is definitely tolerable.

Madcat25 said...
Youve come to the right place for support Phil. Lets hope your flare stops from the Liada. Wish you the best!

Thank you Madcat25! I definitely can already see that to truly be the case. I will keep you all posted! Thank you again for the support, it means the world to me.

I don't want to contradict your doctor or anything but some people can take several weeks to see improvement from Lialda. I hope you are one of the ones who see it in a week. It sounds like you have a lot of good experiences to draw from to help give you strength with this disease. That is great. When I was dx I had never even heard of UC. Another resource you may want to check into is your local CCFA chapter may have support group meetings. Good luck