Sick & Tired of Being Sick & Tired

Hi, I’m Tim, a 43 year old UC’er. I was diagnosed 10 years ago. I have a 13 & 10 year old kids. I live in Pittsburgh PA. I am a financial advisor, 16 years now, and my income is all performance based so if I don’t add value to my clients than I have no income. Because of this, when I’m in a flair up, I am way off my game and my income suffers. I’m the sole breadwinner with a stay at home wife. The stress is high. Prior to diagnosis my business was thriving with a huge upside, post diagnosis has been depressing with 30% income swings year to year and extremely high medical costs.

Something Interesting About Me: I am very active and love to give back so I’m on several community and youth sports boards. I’m a huge people person and love to be on the go. I had a depressing childhood so I love to do family things and take my kids on trips, etc. Currently, UC is killing every aspect of my life as I just want to hide from the world.

Current Ulcerative Colitis Symptoms: My current symptoms are bleeding, cramping, very painful gas, no energy, losing weight, disinterested in anything that usually makes me happy.

My Story

I just started a nasty flair in December, which is out of the ordinary for me as I usually flair each year in spring until October/November. I am now feeling desperate and extremely frustrated.

I have taken Lialda for years and my physician just switched me to Sulfasalazine. I absolutely can’t stand any pharmaceuticals but I can’t control my UC with any diet that I have tried.

My physician also just started me on Uceris Foam which I started a few days ago. Please share with me anyone’s experiences with the foam! My major concern is that I can’t keep it in for more than a few hours and after paying around $1,300 for it my gas and bowel movements are now feeling very expensive! Does anyone have any tips for keeping it in longer?

I’m also taking folic acid to help the adjustment into the sulfasalazine.

My 10 year old son gets really upset when he sees me so sick and tired. My wife is sick of us talking about my illness so I try to not bring it up. Sometimes the cramps just can’t be hidden and I know she is aggravated by it. That adds to the stress. My daughter is 13 so her world revolves around her.

Did I mention how sick I am of sticking things in my ass!! I’m also not a fan of annual colonoscopies.

This is such a lonely disease and reading other’s stories on this site does make me feel better. When I’m not working, I’m coaching youth sports for my 10 year old’s teams (basketball & baseball). Some of the most intimidating places to be now are ball fields with portable toilets; my new definition of anxiety hell. I’m sick of being paper thin and looking tired. Sorry for the rant but my depression is extremely high and I just want to complain here as I can’t talk with anyone about my issues. Right now I hate life and as a Christian man that is secure in Jesus saving grace, I dream about my end.

Medications and other stuff tried:

In the past I have taken several medications, some that I can’t remember their names but had lots of awful experiences. I have tried to refuse the heavy duty meds as they seem to do more damage than good. I’m pretty sure colon cancer is in my future as you can’t bleed from your colon a majority of each year and not have cancer in the future. I feel that if I took some of the heavier biomeds that will just speed up the cancer diagnosis.

The immune suppressants like imuran worked for a while but may have done more harm than good.

Two years ago I received a medical majiuana card and have been using CBD to fight inflammation. From my research and experience I believe most diseases, including UC, are caused by inflammation in diets. At first the CBD did wonders but after a year I felt like I was building an immunity to them. If I increased the amounts than I got the euphoric high feeling. I have a very high functioning occupation and can’t afford to be stoned. I started taking weekly and then monthly breaks from it which seemed to help. However, when I wasn’t taking it, some symptoms started coming back.

I have also tried water kefir which produced amazing results for a me. I was actually getting normal looking bowel movements. I am buying Kevita sparkling drinks from my grocery store but at $4 each it’s not a long term answer. Plus I suspect there is another person like me in my local community as sometimes they run out of the small stock they keep. Lately it is a race to clean out the shelf while they are there.

written by Tim G

submitted in the colitis venting area






30 thoughts on “Sick & Tired of Being Sick & Tired”

  1. Hey Tim,
    Thanks for ranting, and absolutely this is a good place for that:)

    Hang in there buddy!

    Heck yeah this can be awful when the nasties of UC pop up and stick around, but you’re gonna make it through these hard times, and it won’t last forever. As you may know, I’m coming out of a flare that came out of seemingly nowhere and nailed me hard to the tune of 10-20 bathroom visits per day for several days in a row. Budesonide sachets along with going hardcore on chicken soup for serveral days seem to have proved the temporary fix.

    Budesonide and UCers are the same active ingredient, but I did not use the foam, but rather the salt like sachets at 9mg/day with water in the morning before food once a day.
    I’m super glad you had some positive stuff about the water kefir. That is something I had been doing consistently but over the last two months fell off the wagon due to living in car and not having easy access(but laziness is probably the best reason for stopping…)

    I wish you the best,
    Adam

  2. I was just like you for 2-3 years. They tried everything….than my wonderful doctor decided to put me on humari…..and also 6-mp. Which is a form of chemo….within 2-3 months I was in remission and for almost 2 years I am still there. I do watch my diet to an ext6but nothing like i did when i bleed 24,-7. Had to get blood transfusions….so i understand why you are so frustrated.

  3. Tim! I hear you! I am in Aliquippa. I have had UC since 1982 diagnosis. I raised 3 kids during this time and the third born after diagnosis. Am I allowed to suggest a doctor? Robert D. Fusco is in Moon Twp. He has been on this journey with me the whole time. For years I was up and down…some worse than others. I have been pretty much normal last few years. I believe the mercaptopurine 50 mg maintenance dose is the key for me! Not sure how long I have been on it maybe 5 years? I also take prednisone again maintenance of 5 mg per day.i have taken that most of the 38 years…going off when I was pregnant 30 years ago. I started out higher doses of each of these. I have been on Apriso a type of mesalamine…I am not certain it does anything but I take it. I went on Sulfasalazine DR for 2 months as it is a $0 copay for me…but of course there is a shortage so I went back on my April’s…$47/month! I noticed no difference between them. I basically eat what I want. I do take supplements. Folic Acid, probiotics, fish oil, biotin, calcium, magnesium, potassium, er iron, vitamin E, among others. Recently I also started taking gummy elderberry from Walmart. Hopefully this information will help. If you are able to see Dr. Fusco it would be a big help. He listens and isn’t someone to have you do things you are not comfortable with. He is my knight in shining armor. If not for him I wouldn’t be here today. If you want to contact please do. I know what it is like for family not to understand…tell them to think of the worst time they had an upset gut…then let them know that is you every day all day!

  4. I can’t give much advice on medication but I can relate to the spouse not wanting to hear about it. I try not to talk about UC because, well, who wants to talk about that but sometimes you need to be able to say what’s dragging you down. I’m not flaring but I seem to keep joint pain that comes and goes regardless of my colon inflammation. Is it wrong that today my husband woke up with the crud/cold, and I was a little happy that he can see how I feel?

    I follow SCD but I do realize it doesn’t work for everyone. I think that SCD combined with meds as needed have been my best course of action.

    Lastly, if you get to the point of surgery, don’t stress. My cousin did it after suffering for 30 years and she says her only regret is not doing it sooner. She’s doing great!

    Hang in there! ❤️✝️

    Lisa

  5. Hi Tim,

    I can feel your pain. I would keep trying other biologics. I went through all of them. The last one I tried, Xeljanz, helped me. I’m not 100% better, but moving in the right directions. It is tremendously better! There is a small risk of cancer. Although having an inflamed colon also increasing you risk of cancer. I would rather feel better and get cancer then feel shitty get cancer. I would try doing the Uceris before bed. Make sure you don’t eat for a while and try going before you administer the enema. Have you gotten a discount card from the Pharma company for Uceris? I am also trying a product called SBI Protect. It’s worth a google. It is not a pharmaceutical, but you can only get it from a doctor. I would try almost anything to save my colon. Saving the colon should be the number 1 priority. In my opinion the risk of the medications are worth saving my colon. You can get through this. I do not have kids, so I can only speculate. This could be a time to should your kids how to deal with adversity. Fighting though this disease for someone else might give you strength. Everything changes with time. This will pass! I wish you the best!

    Regards,

    George

    1. Thanks George! I really resonate with your point of taking the meds, feeling good and a chance of cancer being a better alternative than feeling like crap and having the same cancer risk. My doctor recommended Entyvio so I’ll start a little research on that.

      Thank you so much for your words of encouragement!!

      Best regards,
      Tim

      1. Thank you to everyone for your advice and words of encouragement. What a great community that Adam built. It means so much to hear from so many relatable people!

      2. Hi Tim,

        I hear Entyvio is probably the safest biologic for IBD. I don’t think Enytvio suppresses your entire immune system. It works locally on the gut. Wish you the best!

        George

  6. HI Tim. I am so sorry for your situation. I suffered for 2 longs years with Ulcerative Colitis. I finally decided it had taken enough of my life and money away from me and I had a total colectomy. I was almost 60 and decided that I did not want any additional surgery, so I opted out of the reconstructive J-pouch surgery. I have never looked back. I feel great, the ostomy is no big deal. I built my strength back and I enjoy my life and can eat/drink anything I want. I hope you are flare free soon!!! It certainly is smart to try different methods before considering surgery. Another advantage: No Colon: No Colonoscopies!!! This UC website was a huge comfort to me. You can definitely find good advice and the support that you deserve!! I wish you the best!!! Sheila

  7. Hey Tim,

    It’s a very complicated disease as you know. I have been struggling for 3 years, I believe the main culprit is stress but diet is part of it too. I recommend meditation. But I think our mind has a lot to do with the manifestation of this disease. My prayers are with you. Try not to be too hard on yourself. Just my 2 cents.

  8. Had anyone mentioned diet? AIP (autoimmune protocol) or AID (autoimmune diet). Flares still happen but less intense. I’ve been on Lialda for 8 years. The Kevita water kefir is good as is goat milk kefir. Also, I think that George’s aloe water or whole leaf aloe gel have been helpful for me. I have been really disciplined about adhering to the AIP diet and might add a slice of fermented gluten free thin slice of bread once in a while. I also eat 100% unsweetened chocolate because I think it helps me since it is purported to help with digestion. (Not on AIP list. Best of luck to you. There are AIP and AID Facebook sites for discussion, help, and recipes. You can also take a class for support. When I feel good, I am so grateful. When I flare up I feel like I failed somehow although I know it’s not my fault. I keep seeking a magic cure. We are all in this together.

  9. Hi Tim. I have a story very similar to yours. I fought UC for 10 years and tried SO many drugs. 6mp, remicade, entivio, Humira just a few. I also tried a strict diet for about 8 months. In the end drugs failed me. They either didn’t work, didnt work very well, or I developed an allergic reaction to it. Prednisone always worked but it is a brutal drug you have to be careful with. In the end I couldn’t leave the house without being in adult diapers. Too many accidents in public and too many urgencies. So so much stress. Oh, did I tell you I’m from Pittsburgh too and you probably know who I am! “Mike The Balloon Guy!”… i bet I have made balloon art for your kids! I have an entertainment company so I am always in public places. ..
    At the urging of my GI who I absolutely love I got an ileostomy last october 4 months ago. Absolutely the best thing I ever did for myself. I am 100% cured. No more pain, urgencies, accidents, side effects from drugs, worry about cancer, no diet restrictions etc. No more drugs. None. I have my life back. It is wonderful. I would be happy to talk to you about it anytime. Please reach out to me if you wish. You might want to do
    Your own research. I did quite a bit of it. Good luck to you Tim. Hang in there.

    1. Honestly I thought I was the only person in Pittsburgh area with UC!
      Hi Balloon Man! That was difficult for you as I look for every bathroom always!
      At times you probably weren’t near one. Next time I see you I will say hello!
      You brings smiles to kids 2-92 and now you can freely smile again!

  10. Dear Tim, and all,

    I have had UC since 1996. There have been periods I’ve been in remission for two-three years at a time. Lately, due to stress, I have recurring flares, am having one currently. I also had one last year for which I tried Humira. The Humira was very problematic. It exacerbated a heart condition, and I developed Von Willenbrands disease, a bleeding disorder. I had open heart surgery last July in Cleveland. The heart muscle had grown too thick.

    Currently, for this flare, I have tried Canasa suppositories, and cortisone enemas, in addition to increasing to max dose of Azulfadine. None were successful, and so now I’m on Prednisone for a month.

    I think each time I get a flare, it’s harder to get into remission.

  11. Dear Tim, and all,

    I have had UC since 1996. There have been periods I’ve been in remission for two-three years at a time. Lately, due to excessive stress, I’m have recurring flares—am having one currently. In addition to mucho urgency and spending hours in the bathroom each morn, 3-4 hours, some bleeding, mucosal shedding, I’ve added anal incontinence, which is new.

    I also had a flare last year for which I tried Humira for 6 months. The Humira was very problematic. It exacerbated a congenital heart condition, and I developed Von Willenbrands disease, a bleeding disorder. I had open heart surgery last July in Cleveland. The heart muscle had grown too thick. I’d never had Von Willenbrands until the Humira.

    I also have scleroderma, another autoimmune disease.

    Currently, for this flare, I have tried Canasa suppositories, and cortisone enemas, in addition to increasing to max dose of Azulfadine. None were successful, and so now I’m on oral Prednisone for a month I’m also still taking the azulfadine. The urgency and frequency are decreasing.

    One of the most difficult challenges is not being able to consume any fruits or vegetables during the flare, raw or cooked. And just negotiating meals. I have “veggie envy”;when others are enjoying their salads.

    When I’m not flaring I enjoy an orange with breakfast in the morn and lots of greens, apples, peaches, etc.

    I think each successive time I flare, it’s harder to get into remission. That said, like you, Tim I’m a very active person in the community who chooses not to be defined by illness. I had an art gallery with 13 employees for 30 years. I’m currently a writer and workshop instructor. Many are unaware I have health issues at all. But, like everyone else, I’d love to discover more effective treatments and will continue to research any new discoveries. Unfortunately, orphan diseases are neglected when it comes to funds for research.

    Thanks for listening, and for sharing your stories.
    Diane

  12. Hey buddy it’s akash I am from India ,I am just 19 yrs old and I have flare-ups from when I was 15 years old….but one thing say that mesacol and other drugs don’t help u to get better ,but in India we have one thing called Ayurveda that was 5000 years old science
    … Ayurveda helps me to cure my disease because Ayurveda is only medical treatment that say we can treat ulcerative colitis …after fed from English tablets and drugs..I move to Ayurveda and believe me my condition is better than from previous years my weight was also increase my flare up in also in control ….but it’s long journey to go….I suggest you watch planet Ayurveda channel on YouTube that give u the best advice….but 100% say uc is treatable ..they have clinic in India and also network of suppliers of there medicine in USA and they also treat online ….try them you don’t regret my advice brother…if. Anything more to know message me at my what’s app+918171640498 have a great day and diet is very important..

      1. Yes I have a j pouch and I still have a lot of BM s but that’s to be expected. On a bad day maybe 10 . I can eat whatever I want and there is no urgency !! It’s amazing !! But still , if you eat healthy it does help .

        1. Hi Russ,

          I appreciate the info. Eating whatever I want and not having to worry about urgency sounds like a far off memory. What is the average BMs per day? You have any pain? You have to get up at night to go? How long have you had the J-Pouch? I don’t mean to bombard you with a bunch of questions. Thank you for your insights!

          George

    1. Hi Jeremiah,

      I have tried them all Humira, Remicade, Entyvio, Stelera, Imuran and now I am on Xeljanz. Xeljanz has partially improved my symptoms.

      george

      1. When you say partially improved your symptoms, does that mean less bowel movements?
        Have you tried the SCD diet on the back of these drugs? Like going sugar free and starch free?

        1. I have tried SCD in the past with no improvement. I have little faith it will work now. As you know the SCD is not easily. Don’t get me wrong the SCD is still on the table. I am also looking into fecal transplants and exosomes. The logistic of the fecal transplant are prohibitive. I would need to find at least one donor and run a battery of test for viruses and pathogens. I appreciate your advice.

          Regards,

          George

          1. George
            I had a fmt for c diff. It cleared all my symptoms up until my maintenance colonoscopy. I am trying to hang on for fmt as a treatment. Was going to do more fmt over spring break but that darn covid 19 hit. My husband and son are my donors.

          2. Hi Becky,

            For some reason I was unable to directly reply to your comment. You are completely symptoms free from FMT? I am going to give it a try. I just need to find a donor. Thank you for the information. Very helpful!

            Regards,

            George

  13. Hi George, I probably on average have 7 BM a day . I try to eat a lighter meal for dinner and in the early evening to help not getting up as much. on average I get 2 times a night . I’ve had the pouch since May 2016 . No pain at all. No problem ask me whatever you wish . Hope you’re doing ok .

  14. Hi Tim
    From the burgh too. I have had uc 7 yrs now. I too do not want to go the biologic route. I was on lialda and switched to sulfasalazine too. Had my maintenance colonoscopy and it pushed me into a flare. This is the 2nd time this has happened. I got my medical mmj card too and it has helped immensely. I use a higher cbd low thc combo. From what i have read, a combo of the 2 is best. The cbd is about 8% and the thc is like 6%. Considering the normal thc is around 19 %. Wow! I am on a baby dose. I have actually been able to reduce the frequency of mmj as my syptoms improve. I use at night while i lay in bed and again when i wake up to pee. Lots of h2o needed with sulfasalazine. 1 have 1 formed bm a day. Maybe 2. No visible blood but almost always mucus. Looks like broken sausage casing around sausage. Gross. Little to no pain and bloat. I use 4 sulfas in am and 4 in pm with folic acid, florastor, mutivit and vit d. I can not eat veggies but banana and applesauce ok. Everytime i try veggies i develope symptoms again. I miss veggies. Was vegetarian when diagnosed. Going to try drinking veggies next. I hope this helps in some small way. Good luck to u and many blessings

Leave a Reply to Tim Cancel reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.