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Humira, Will this Finally Work, I Can’t Take Much More

Tina-CMeet Tina:

Hi, I am Tina from Hampshire in the United Kingdom. I am 43 years old and a mother or two lovely children aged 9 and 11. I was diagnosed with UC nine years ago after the birth of my daughter. I am currently in a severe flare up which has lasted over 9 months. I am a teaching assistant in a local primary school.

Some more background info:

I am, or was until this last attack, very sporty and love playing tennis. I also enjoy socializing and going out with my friends. I used to love a glass, or two of Prosecco, which sadly is again off limits. I am happiest when I am with my family and my chocolate Labrador!

Symptoms:

I am have been in a severe flare up since May 2014. I have heavy bleeding, passing mostly blood at least 15 times a day. I have urgency and quite alot of discomfort, weakness and fatigue. I have been hospitalised for 11 days, and as well as prednisolone have tried nearly every immune suppresent going. I am currently on humira injections…. Currently nothing is working for me. For quite an easy going and placid person, I have a stubborn colon!

Humira, Will this Finally Work

I am currently in my 3rd Flare up since being diagnosed nine years ago. My first two flares were moderate and went easily into remission with prednisolone. In February 2014 I had rectocele surgery as my bowel had prolapsed and I believe that this was the trigger to my biggest flare up yet.

Admittedly I did put my head in the sand for quite a while as I was back playing tennis and working after my operation and just keen to resume my normal active life. However my bleeding was in easing in volume every day and I started to get very dizzy at work. Then my bowels shut down and stopped working so that I was only passing blood and not stools. That was when I was hospitalised and initially put on IV prednisolone. However my body was non responsive and I was then put on Ciclosporin and after 11 days discharged from hospital. However I started to get negative, scary side effects from Ciclosporin and was then put on Azthioprine, another immune suppresent. Again I experienced negative side effects and became virtually bed bound and nauseated, I started to quickly loose weight. My medication was then changed to Mercaptopurine, which again was poorly tolerated.

My GI then suggested that I start Humira injections with a view to starting Methotrexate after Xmas. They said that they were giving me a while to get the previous medication out of my system before I should start taking Methotrexte.

The humira is not yet working, although I have not yet had any of the very scary side effects that I have read about. I am signed off work to a job that I love and am at the stage where I am not sure that I can continue with these scary medications. My GI doesn’t want to give up on my colon, although I am not sure how much more of this I can take.

Medications:

Mesalazine – used effectively for 9 years, no longer working
Prednisolone – non respondent
Ciclosporin
azathioprine
Mercaptopurine
Humira

written by Tina C

submitted in the colitis venting area




Humira

22 Responses to Humira, Will this Finally Work, I Can’t Take Much More

  1. Liz December 30, 2014 at 6:51 am #

    I feel your pain! I’m in a similar boat, 2 small kids, bad flare, and nothing seems to be working. I tried Humira in September and it seemed to help after about 2 weeks, but not enough. Then I tried Remicade, which works GREAT for some people, but after 12 weeks we’ve decided it’s not working for me. Next up is Entyvio (the new one), fingers crossed! Best wishes for a recovery soon, and that the Humira works for you!!

  2. Tina C
    Tina December 30, 2014 at 8:40 am #

    Hi Liz,

    So lovely to hear from you and I really hope that Entyvio works for you, I agree with you it is so hard not being the normal, active, fun mum!

    I was admitted into hospital last night as humira doesn’t seem to have worked and it might be they have to remove my colon. I will find out later today.

    Have a lovely New Year and I really hope you get better soon for your family.

    Tina

    • Adam
      Adam December 31, 2014 at 1:12 am #

      Hi Tina,

      I’m hoping that you’re feeling a little (or heck, a whole lot:) better than a few days ago, and just wanted to let you know was thinking of you this morning especially after reading your comment above. If you do decide or have questions about surgery and options there, there are a ton of really detailed stories from others who have gone down that path. And I would recommend you take a look at them if that seems to be like the decision you are making. You can find the links to those on the right side of the page in the “categories” section on a regular computer or thru these links if its easier:

      http://www.ihaveuc.com/category/colon-surgery/
      http://www.ihaveuc.com/category/colon-surgery/post-surgery/
      http://www.ihaveuc.com/category/colon-surgery/before-surgery/
      http://www.ihaveuc.com/category/colon-surgery/j-pouchers/

      Most of all, just hope you start feeling better and get some relief no matter what decisions you make. Hang in there Tina, things will calm down for you too in not too long:)
      -Adam

      • Tina C
        Tina December 31, 2014 at 3:55 am #

        Hi Adam

        Thank you so much. Your website has made me laugh through my tears, you are an inspiration.

        I am just off for flexi sig and then some big decisions to be made.

        Thanks again and so pleased you are well

        Tina

    • Sabina Radovic December 31, 2014 at 12:54 pm #

      Hi Tina, i can relate to you because i was diagnosed with ulcerative colitis 2010, and i am dealing with IT ever since. I went through terible 3 month of pain, relising just blod and mucus that year and next, 2011. Now i am controling my eliminatory tract with probiotics and only probiotics. I have SCIO Bio- feedback machine ( you can read on Google) that can find what particular probiotics you need, and I will ne happy to find for you wich ones you need. I deeply belive that probiotics are one of the most important elements for healthy bowal.I need to meet you on Skype if you deside to try. I am not selling anything, just wont to help.
      My Skype address is Sabina Radovic.
      My Email is energy_yoga@yahoo.ca

  3. Suresh December 30, 2014 at 8:21 pm #

    Hi Tina,

    Sorry to hear about the severity of the problem for you. One quick suggestion is to try the red cabbage juice recommended in this forum. It seems to work well with our son despite his initial skepticism. Before I give you the details, let me forewarn you that this could cause gas pain. He has 4 oz of cabbage juice (we use the red variety) made palatable with carrot and apple juice in the morning and evening. After having it for 3 days, his blood loss was considerably less and in a few days after it, it appears to have stopped almost completely. He has been on it for about six months with good results. Occasionally he has blood but we suspect he might have skipped a dose or two of the juice, not sure. In any case, you may want to consider it. Again, the usual caveats apply – we are not professionally qualified to give medical advice, we have no clue how this works and this is intended merely as a suggestion to try. Please do the needful – like checking with your doctor before proceeding. Good luck to you in the New Year.

    • Tina C
      Tina December 30, 2014 at 8:46 pm #

      Hi Suresh

      Thank you so much for your suggestion and I will certainly give it a try when I come out of hospital. I was admitted two days ago as unfortunately I deteriorated over Xmas, I am waiting to hear if my colon will be removed.

      I am so pleased that this has worked for your son and I wish you and your family a really happy and healthy New Year!

      Kind regards

      Tina

    • Mahesh N November 22, 2015 at 5:50 am #

      Hi Tina,

      I was following through your thread today. I hope things worked out with whatever decision you made and this xmas will be lot better as result. Do share your results/experience if you can. (may be there is another thread I have yet to stumble upon)

      I myself (46) father of two have been living with UC for about 8 years. Last 3+ years have been 2-3 flares a year each lasting 2+ months. So far prednisone (40 occasionally 60mg taper) did the trick but GI says I am steroid dependent and wants me to get off it with 6MP/Humira/Remicade beginning next week. I am dealing with years of steroid side-effects and not want to deal with more – hence looking at surgery as an option. Hence my question.

      Suresh,
      I read your post. Hope things are still working out with you. Would like to connect with your suggestion and get bit more details

      Lynn,
      I am going to read the book you suggested – may be there is something that may work for me :-)

      Thanks to all and this website !!

      • Tina C
        Tina November 22, 2015 at 8:21 am #

        Hi Mahesh
        Thank you for kind words of support and I so sorry to hear that you are suffering from severe flares of UC and have become steroid dependent.
        Last March I became so ill with UC that I ended up having surgery to remove my whole large bowel. They left my rectal stump in with the hope that I can have j- pouch surgery in the near future. I too had become steroid dependent at that stage and unfortunately Humira did not work for me. Overall surgery changed my life for the better and I finally went back to work part -time in September. However, the last few months I have started bleeding again and following a sigmoidscopy it showed that the UC is severely attacking my rectal stump. I have just gone back on a high dose of steroids again and am seeing my surgeon on Thursday.
        If you do have to have the surgery it is not too bad and it feels amazing not to feel so ill all the time.
        I am so glad to hear from you, I had missed this UC site, but felt that as I had had the surgery maybe it wasn’t relevant anymore-how wrong I was! Please keep in touch I really hope you make the right decision and get on that road to improved health. Kind wishes Tina

        • Mahesh N November 23, 2015 at 5:43 am #

          Hi Tina,

          Good to see your response … you are very prompt :-)

          Sorry to know that things are not exactly the way you anticipated – but I am sure with the fighter you are – you will come out even stronger than before and get through the short patch very successfully. Wish you all the best and happy holidays!!

          Couple of questions on your post surgery recovery –
          1. How long did it take for you to be back on your feet and say start working if you wanted to? Any restrictions at all on what you can and cannot do that you found/told about? Something I need to plan for –
          2. How long did it take for you to get back on solid/normal diet again? Were there any restrictions – are there any now?
          3. Lastly (only if you feel like answering this question), while I am sure there are no urges any more – what is the BM frequency / type one can expect or how is the daily routine like?

          I will follow your future posts – as/ when you get a chance to update them.

          • Tina C
            Tina November 23, 2015 at 11:13 am #

            Hi Mahesh
            Thank you for your words of support. It took me approx 3 months post surgery until I felt ready to return to work. As I work in a primary school I was given a phased return and currently am working on a part-time basis. I have to be careful with heavy lifting as it could cause a hernia and I must admit I do get very tired. I am not yet back playing tennis. However I feel 100% better than I did before the surgery. As I have a temporary(hopefully) stoma I do not have bms. I have found the stoma bag surprisngly easy to adapt to and it has saved my life, I was told after the surgery that I nearly died!
            Whatever decision you make I am sure it will be the right one for you and your family. I look forward to hearing how you get on. Best wishes Tina

  4. Tina C
    Tina January 15, 2015 at 7:21 am #

    Hi

    I am home from hospital and was really kept going by this great website, thank you everyone. My uc has spread by a further 35cm in 2 months despite being on the heavy drugs, currently on humira. I am back in on Tuesday and my GI wants me to have a final try with methotrexate or it looks like I will be going down the surgery route.

    Can anyone help me – has any one had success with methotrexate?
    Can I try the scd diet although I am in acute management stage?
    I am resigning towards surgery so that I can be a mum again to my children.

    Thanks again for this site, it got me through my third stay in hospital in the last 9 months

    • k January 16, 2015 at 9:34 am #

      Hi Tina,

      40 years ago this week they took out my colon in emergency surgery. (I had been told of the possible need for surgery the night before.) So I have had an ileostomy for 40 years now. There have been a few problems over the years, but nothing like trying to live with uc. I still consider the ileostomy a miracle.

      If you eventually go the surgery route, I hope you have the same success. Wishing you all the best for 2015 and beyond.

      • Tina C
        Tina January 16, 2015 at 9:47 am #

        Hi K

        Thank you for yr message of support and it is so good to hear that surgery has been a success for you.

        I must admit, when I was in hospital I did say to my gi, that sometimes I feel that I just want my colon and rectum out!

        Thanks again for you message

        Tina

  5. Lynne January 18, 2015 at 4:41 pm #

    Hi Tina – I was also diagnosed 9 yrs ago. Would you be willing to try a completely different approach? You mentioned that you were diagnosed after your daughter was born. That’s a big life change. A good one, I’m sure, but still hard in some ways, yes? Was there anything else happening in your life at that time? How about precipitating your flares? Sometimes our brain attempts to distract us from facing our difficult emotions from various life events, changes, and/or inner struggles. The brain is able to prompt our bodies to react (& distract) in very real ways. I have forced myself to delve inside and face hard emotions due to life choices, circumstances, etc. I have learned to turn my attention away from ‘sickness’ and focus on being healthy with my mind/brain instead. There is a mind/body connection. It was when my GI dr began to suggest surgery for me that I began to find another way. I am no longer sick. If you’re willing to think outside the box, I’d be happy to chat. What have you got to lose? :)

    lynne

  6. Tina C
    Tina January 19, 2015 at 6:33 am #

    Hi Lynn

    Thank you for your reply and I do agree with you that I think there is a close like to this disease and stress. In 2002, I had a very stressful event when my first child, my daughter was stillborn. I did have counselling for a few years after. My son was born a few years later and then in 2006 my daughter. I must admit, having my daughter, although such a wonderful, happy event, did bring back some very sad, strong emotions that I had, and still do have a lot of anxiety that may children will remain safe and healthy.
    I am very open to hearing more from you and would really love to hear back from you again. I am seeing my GI tomorrow to see my options going forward.
    I am so pleased to hear that you are no longer sick.
    Take care Lynn
    Tina

  7. Lynne January 19, 2015 at 10:04 pm #

    Tina – I’m so sorry for the loss of your first child. That is unimaginable pain. Too much to bear, really. Therefore, the brain -the unconscious- attempts to protect us from feeling those incredibly painful emotions: hurt, anger, grief, sadness, abandonment, etc. Our brains will literally create aches, pains, chronic conditions, etc., in our bodies. Why? It distracts us. It places our focus on the physical rather than the most difficult, dark emotions we repress. Are our health issues all in our heads? Well, many of them originate in our brains, yes. But, they are very real physical issues. My colonoscopy showed that my colon was severely inflamed. It was real. But, treating the symptoms with dietary changes, probiotics, a plethora of supplements, and medications just didn’t work. I was treating symptoms, not getting to the core of the matter. The only thing that made a real difference was to address my mind and my brain. The physical improvements followed. Sounds too easy? Well, it’s not. Facing hard stuff is hard. Learning how to stop ‘thinking sick’ takes practice. But, now, I can eat & drink anything I want. No more expensive probiotics or supplements … and zero medication. If you’d like to chat more … maybe privately? … we could email or Facebook. :)

    lynne

  8. Tina C
    Tina January 20, 2015 at 10:33 am #

    Hi Lynne

    Thank you for yr lovely, supportive message- it really touched me. I am a little over the place at moment as looks like surgery may be imminent. I am going to have a good chat with my family and try to get my head around everything.
    I would love to chat to you soon, when I am a little clearer in my thoughts.
    Thank you again Lynn
    Tina

  9. Lynne January 20, 2015 at 10:59 am #

    Tina – You’re very welcome. I understand how overwhelming this can be, especially when symptoms are so present. I don’t want to overwhelm you further, but there is a book I’d like to recommend as you & your family give this some thought. It is written by someone who was also approaching surgery for crohns/colitis. It’s entitled, I Healed My Crohns Colitis: Free The Mind … The Body Will Follow, by Robert Stickles. If you have a kindle, it’s only $3.99 on Amazon, and it’s an easy read. I have spoken with this man, personally, and he is a great example of a journey towards strong & healthy intestines. If you’d like to try one last approach before surgery, this would be a great place to start. Again, at this point, what have you got to lose? Wishing you the very best, Tina. :)

    lynne

  10. Tina C
    Tina January 20, 2015 at 12:00 pm #

    Lynne, I am going to download the book now, thank you so much for being there and giving me some hope at this stage. I will keep in touch Tina

  11. Alisdair February 11, 2015 at 8:43 am #

    Hi Tina, I do hope things pick up for you soon. I too have been on the humira and had some limited success mainly with the loading dose which kept me well for 2 weeks since then I have had limited success but holding in there. Been in a flare for a long time now and really draining trying to keep work going and have some home life too. Have you had infleximab? That worked well but again that was for only 2 sessions of the 3. Steroids well first time round all good for 16 weeks almost like a cure but the second and third doses no effect. Like you spent some time in hospital last year over Easter and had steroid infused no joy. I do hope the humira works for you long term. All the best.

    • Tina C
      Tina February 12, 2015 at 11:37 am #

      Hi Alisdair

      Thank you for your response and words of encouragement. Unfortunately the Humira did not work for me and I am at the stage when I am about to have an initial meeting with a surgeon. I have previously been on quite a wide variety of immune suppresents, which none regrettably have worked for me. Also I am now non reponsive to steroids. I am pin the mind set now that I almost welcome surgery and to get my life back.
      I am sorry to hear that you have also been in hospital and that Humira or steroids have not worked for you too. How are you? What are your next steps? Kind regards Tina

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