20 Years and Counting – Crohn’s and Now Colitis

Introduction:

Hi. I am 41 years old and was diagnosed with Chron’s at age 20. Recently, my colonoscopy showed I have also developed ulcerative colitis, so now I am dealing with both.

Current Symptoms:

Fatigue, anemia, sudden weight loss/gain, bloating, bleeding with stool, gas, cramps, joint pains, diarrhea, constipation, mucus like stools – just to name a few.

Crohn’s and Colitis Story:

I have tried every pill available for treatment with horrible side effects. I am now on my 5th Remicade treatment. My recent blood work shows that my blood level has dropped again. I have a follow up appointment in 2 weeks, if it has dropped again, then its time for another blood transfusion (this will be the 3rd time this year). If the Remicade does not work, my doc is pretty much at a loss as to where to go from here. I REFUSE to have surgery!!!!! My body has already proved that it does not heal well, so NO SURGERY. I will die in one piece, thank you very much!! I am currently on Remicade, calcium pills, iron pills and a multivitamin.

I have recently developed a deep cough that I am told is a side effect of the Remicade.

I have pretty much had it with doctors!! Does any of this sound familiar to anyone else? I know we all have different symptoms, different side effects and different levels of pain tolerance, but does anyone have any suggestions for me. I am so frustrated at this point. I am doing everything the doctors are telling me to do and I am still getting bad news about my blood levels. I am trying very hard to stay positive and not give up, but it’s getting harder and harder. I am told that my condition will get worse with age. My job is being so patient with me, but my biggest concern is losing my job. I have a family to support! I am lucky to have an amazing husband and to amazing daughters, but I hate feeling sick all the time and not being able to do things with them. My girls are teens and they always help around the house, but I feel like less of a mom and it’s so painful. I feel for my husband too. He has to be patient with me and see me in pain all the time. It sucks!

Where I’d like to be in 1 year:

I would love to get this under control and live a “normal” life. I want to be active with my kids and enjoy them while I can. They are getting older and I don’t want to lose these years with them. I want to enjoy life with my husband!

Medications:

I have tried everything out there available for Crohns and Colitis. I felt the best on Prednisone, but it gave me a kidney stone, which led to a gallbladder attack and I had to have my gallbladder removed. I have had bad reactions to everything on the list! Remicade makes me feel ALMOST as good as the steroids, but now I have the most annoying cough. UGH!!

written by “Frustrated”

submitted in the colitis venting area









cough, Remicade

9 Responses to 20 Years and Counting – Crohn’s and Now Colitis

  1. Mylene
    Mylene October 14, 2012 at 6:49 pm #

    Hi !

    I feel for you very much ! I have had my dx of colitis since 2007 and never really been in remission since with the most awful symptoms ! I am also 41 and a mother of 2 grown children and a grandmother, a wife, a social worker, and my passion a zumba instructor ! And like you i want a normal life and i am not giving up ! I also dont want surgery and i have tried every drug under the sun remicade was the last one that did not work and the dr now suspended humira to go to symponie which is a trial drug for. Colitis as is it is meant initially for rhumatoid arthritis. But i am talking to my Gi this thursday as i refuse drugs for now as i am on the scd diet and starting the colustrum even if my GI will not approve. I am still on prednisone but tapering off. i am better than i was but it takes time and lots of tweaking ! I make all my own foods keep a journal i will do what i can not to have surgery and heal thyself ! Lol anyway if you need anything i can be here and i wish you luck. Never give up we can get in remission if we believe ! Hugs !

  2. Nicole October 14, 2012 at 10:19 pm #

    Hello, I also have Ulcerative and Chrons , they have labeled it indeterminate colitis/Chrons . I was diagnosed2 yrs ago, but believe I have had it since I was 19. I am struggling with the same things . I am a kindergarten teacher that is always sick and needing to rush to the bathroom. I was put on Remicade in August of this year along with about 12 other meds like colozal and had an allergic reaction. Was able to get 3 infusions, but I only felt worse! Turns out I also have Cdiff….. This is an intestinal infection that is very aggressive and impossible to get rid of!!! So needless to say ” yay” me! Because of a lot of blood work my dr gave me the double indeterminate diagnosis and I am taking Vanco for the cdiff and starting Humira injections as soon as I get over the sinus infection, deep cough, and plursay I have seems to have caught. Like you I am at my witts end….. I have no children, and no husband…. Not even a boyfriend because this disease seems to keep you trapped Ar home to the safety of your toilet! I am hoping beyond hope the Humira gives me some relif and sanity…. My goal is to reach remission, even I’d it’s only for a short time, just want to remember what life was like before UC ! Keep you head up. This disease is hard on everyone around you, but you ” we” truly feel the sacrifice, pain, and embarrassment. I do not know what is in store for me next, but this has got to work …….. Sonething has to!

  3. Jessica from Ohio
    jessica October 14, 2012 at 10:43 pm #

    I am so sorry to hear you are having a rough time. I was diagnosed in april 2012. I am 3 weeks free from the prednisone. Have you ever taken herbal meds? I have taken Kava Kava (for anxiety), bilberry (for antiinflamation & antidiarrhea), garlic tablets (for antibotic effects). Make sure you check these with your current meds if you think these things that may help you.

    I have heard that flaxoil seed (think that is proper spelling on that =/)is good to help coat GI system to help protect it. I havent dont alot of research on that as I have on the ones I mentioned above so that maybe something to look into. Also diet does play a role in how you feel. People had to remind me that all the time…. and sometimes I still forget but am quickly reminded by an unhappy GI.

    Also, I am with you , I have had it with doctors as well. Dr’s have started to become pill pushers, here, take this pill…. it wont cure what you have but will fix the symptoms, you may have some side effects. You are not alone.

    Well I hope I gave you some other ideas if you havent visited them before. If I didnt, sorry I couldnt of been some kind of help
    Hang in there. I pray things get better for you.

    Take Care, Jessica

  4. Frustrated October 15, 2012 at 6:31 am #

    Thank you to all who have responded. I take some comfort in knowing I am not alone in this. Its nice to know that there are others who can understand what I am going through. My husband is super supportive, but he doesn’t fully understand and I see his frustration at times. I know he is feeling the frustration of not being able to help. I am new to this site and I need to take some time to read through all the great info. I am definitely going to try to SCD diet, not only for me, but for my family. I fear that my children are at risk and it would kill me to see my children suffer as I have. I will definitely update and share with you all anything I find that helps! My prayers go out to all of you.

  5. Bev October 15, 2012 at 4:42 pm #

    Hi,

    Yes, ‘pretty much had it with doctors’ is a common side effect of UC!! It’s because there are NO good options for us.

    I went off all of the meds…they weren’t working, and only making me feel worse. The doctors were most unhappy, to put it mildly, scaring me by saying that I had to be on something or I may get cancer! Cancer! Wow…I wonder how they can just tell us that. I really think it’s a tactic so that we will stay on meds.

    I am on a good probiotic now, and in full remission. I’m starting to really wonder why this is working for me, when it does not work for everyone. I know each of us is different, but probiotics REALLY saved me!! I don’t have Crohn’s mind you, I only have UC.

    I just can’t help but think, if the meds aren’t working…then why keep taking them? You either have to try them all until you find one that works for you, or don’t take them at all and try and go natural. I would have never believed that probiotics could work so well, but when you really think about it…look how well antibiotics work when we have an infection.

    Cheers, and all the best
    Bev

  6. Gus January 21, 2013 at 2:33 pm #

    ‘Ive had it with doctors’ should be my middle name….. was diagnosed with colitis based on bloody stools last year….. was taking heavy doses of ibuprofen at the time. Had a sigmoidoscopy and colonoscopy 6 months apart last year. They showed very little inflammation, and no inflammation respectively. Doctor prescibed Asacol anyway. symptoms got worse. Doctor prescribed more asacol and pentasa suppositories. Symptoms got worse. Doctor perscribed MORE asacol. Ended up in hospital.
    Told the doctors i thought asacol was the problem as if i didn’t take it i got better rapidly. doctors disagreed. I refused to take it. symptoms (SEVERE BLEEDING AND GAS BLOATING AND SEVERE PAIN) were gone in almost 24 hours.Have had no symptoms since. The doctors say my reaction to asacol is all in my head despite this. have been on Prednisone, cyclosporin and 6mp since. no symptoms. Then specialist rings me up ans says they want to put me back on asacol……… I can’t help but wonder how stupid and incompetent a doctor must be to re-prescribe drugs when i have no symptoms, especially when it appears to be the problem………

    • bev January 22, 2013 at 9:38 am #

      Everyone…please listen to Gus.

      We are prescribed these meds because we are desperate, and we don’t know what to do to help ourselves…but we must try…naturally. Trial and error.

      Otherwise, you too will be put on the merry-go-round of UC meds…until nothing works at all and who only knows the long term side effects of all of those dangerous drugs…

      Sorry to be so blunt, but it’s the truth. Been there, done that…in remission after 15 years…and on NO meds! You all know my story ad nauseum!!

      Bev
      :)

  7. Worried Mother March 21, 2014 at 11:16 am #

    My 15 year old son just diagnosed with UC. He finally admitted to us a few weeks back he has been bleeding rectally for over a year. Trying to gather as much info as I can and trying to stay calm. I am going to go out and get probiotic products today. He is on suppository for two weeks then follow up with GI doctor. He has no other symptoms and appears to be in perfect health. Very athletic and training for varsity football. Trying to collect data and really do not want to put him on meds.

  8. Alexis Beltran August 23, 2014 at 12:13 pm #

    Frustrated,

    I understand all very well your frustrations. I was diagnosed with UP (Proctitis) back in November of 2013 and this pat week now Colitis. I ran into this online interview with Dr. David Klein
    http://happyguide.co/2007/03/06/heal-crohns-and-colitis/
    I also purchase his book “Self Healing Colitis and Crohn’s” and started reading it. very insighful information as to what is going on with us and C&C.
    I would suggest you read the inetrview, buy the book and consider what he has to say. i am in the process of starting to guide myself by his background.
    Also check his self healing website @ http://www.selfhealingempowerment.com/

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No matter what, colitis flares don't last forever, don't forget it:)