Desperately seeking support

[MrsLifechange]

Hello, I'm new here and this is the first time I have reached out to the IBD community since being diagnosed in Jan 16 with Crohns at the age of 51. This was closely followed by a rare EIM of auto immune inner ear disease AIED which has resulted in hearing loss in one ear and deafening 24/7 tinnitus in both ears. I had to give up my job last year as an academic. My life has become the 4 walls of my home and because of all my symptoms rarely feel well or able to go out. I started on Humira last week and am hoping for a miracle as life is quite honestly unbearable. Any advice, experiences gratefully received.

[Valbaty54]

Hello, Sorry to hear you are feeling so bad at the moment. If it were me, the tinnitus would drive me to distraction, let alone Crohns symptoms. I really hope the Humira works for you, though it may take a few weeks to improve things. I have UC , diagnosed in July 15, and have had permanent symptoms ever since. I'm working through the various levels of drug treatments, currently on Infliximab and Azathioprine, plus other pills. I had a year on Humira, which didn't really work for me, but this is the way it goes for many of us! In the meantime, I try to do most of my regular activities when I feel up to it. Do you have supportive friends to talk to? The national charity Crohns and Colitis uk are very helpful with info and local group meetings. Hope life improves soon!

[MrsLifechange in reply to Valbaty54]

Hello and thank you for your kind reply. I too have been doing all the drug rounds and now at Humira. Couldn't tolerate Methotrexate or Azathioprine ! Also hate taking so many nasty drugs. My friends all work and I find myself not want to bore folk with my endless woes! Have joined Crohns and Colitis so will look there. Thanks again.

[willow24 Administrator]

Humira worked wonders for me when I was on it (unfortunately I get skin lesions after being on a biologic too long) when I had my last colonoscopy a yr ago the bowel had no active disease whatsoever. fingers crossed it will work as well for you.

its so unfair that one auto immune disease can lead to another, would the humira improve your AEID too? x

[MrsLifechange]

Hello thank you for your kind reply. I resisted going onto biologics for months but got to a point when I had to try them. I was an academic so know my way around research and due to the rarity of AIED there are no clinical trials and very small studies as a result. Humira was the only one that showed some efficacy with EIMs so desperately hoping for success. Just want my life back!

[Hobbits]

Welcome! You can find support with us. I can imagine how devastating it must be to have to give up your occupation. I'm fearing this happening to me too, trying to focus my hopes now on upcoming treatments and hoping for a miracle so that I can continue my purpose, my career. Sometimes the Biologics take time to build up in your system to fully work, and hoping you have great success with the Humira. Humira was the first Biologic I tried, I was allergic, so went to Enbrel (for Rheumatoid Arthritis) and being newly diagnosed with Crohn's this past March, I will be starting Remicade on Oct 20th. I have not heard of auto immune inner ear disease before, could not imagine how devastating to loose hearing and suffer with tinnitus 24/7.

This is the place if you need to vent, bounce ideas off others, learn about others treatments and meet other people with autoimmune conditions. I think even with friends or family, a lot of us feel very isolated because sometimes no matter how close we are to others, the only people who understand the true suffering, is someone else with an autoimmune disease. It doesn't help that most of us look healthy, often deceiving to what is raging inside our bodies.

I read people posts, and I am truly amazed at the strength of the people on this site. I'm truly thankful for everyone, from the organization who set up this site, the the admins and the people who come on here and tell their stories, there is so much value in learning from others.

[MrsLifechange]

Hello and thank you for your reply. I have not come to terms with having to give up my career and SO hope you don't either as it's awful and I feel as if I have lost my identity. You are right about needing to share with others experiencing auto immune diseases as sometimes just impossible to describe to your loved ones. Good luck on the 20th hope it works for you.

[169bus]

Dear mrslifechange. What can you say, but sorry for all your problems, plus the comment that l've been there, had humira , then infusions, couldn't. leave the house.,. Had to attempt 6 or 7 times to leave the front door, now l've had an Ileostamy , and complications set in, l have no worry of Crohns but worry about the complications , all l can say you will get there. All the best bus169

[MrsLifechange in reply to 169bus]

Hello and thank you for your reply. IBD really is hideous sorry to hear about your complications. Have you found anything works for you? Keep strong and be kind to you.

[Gillysboy]

Mrslifechange, Sorry to here about your problems with ibd i had asacol, Mercaptopurine, ect not worked but Humira has made a massive difference only took a couple of weeks to see a slight improvement then got better and better been on Humira just over a year now and it really works for me, hopefully it will give you a new lease of life let us know how it goes.

[MrsLifechange in reply to Gillysboy]

Hello and thank you for your reply. I have now been on Humira for 8 weeks and sadly not had much improvement. I had so hoped it would be the answer but.. will give it the 12 weeks then abandon it I think. Feel like just coming off all drugs and see what happens! Great that you have had success with Humira.

[Gillysboy in reply to MrsLifechange]

Hi is there any improvement at all even a bit, if so it maybe things will take longer I very much hope so talk to your lbd team I wish you well.

[MrsLifechange in reply to Gillysboy]

Thank you. At hospital tomorrow so will see what they are saying

[Gillysboy in reply to MrsLifechange]

Write down any questions you may have so you don’t forget them and good luck

[Gillysboy]

How did your hospital appointment go. anything positive

[MrsLifechange in reply to Gillysboy]

Hello thanks for remembering. I’m fed up being a medical mystery! No inflammatory markers yet symptoms raging. Took Humira today but think unless I miraculously improve over next 2 weeks it will be last one. My dietician mentioned SIBO small bowel intestinal over growth which iv researched into. Gp hadn’t heard of it have you? Going to start on metronidazole (hideous) cycles to see if it helps. I’m also going to do the SIBO diet which will be interesting! Not sure about what will happen drug wise thereafter . Feel my body needs a break. Thanks for asking .

[SORRELHIPPO]

Having had a "like" from you thought I would look you up, life has been tough, I wondered where you were now. As to Metronidazole, have to take when I get drainage abscesses as a side issue to the Crohn's. On high doses of this I did not just get "Brain fog" it left home!! As to work, all is not always lost. I worked accross Health and Social Services as an Occupational Therapist, 6 months after my diagnosis (35 ish) was pensioned off. However with much trial and error of meds etc, after about 5 years, went for a job interview, and was completely honest. I did have the experience and knowledge they wanted and was taking a lower position (to reduce stress) so the employer saw a possible gain. They agreed to emply me part time for 3 months and to review at that time. The staff team I joined were mainly very supportive, and the 3 months was taken for another 3 months. I managed 15 years working 18 hours a week, if I upped this for more than a week, would usually relapse. During these years I had 2 blue light admissions followed by surgery, and still managed to return to work. From my work point of view I think it made me better. I was in a team that did Rehab at home for mainly older people, so many of our text books talk about fatigue/pain/fear of surgery/dementia and when it is not/family dynamics etc etc. I found it invaluable to be able to discuss and give advice from experience, although most of the time the patients did not know this. Could you work from home, OU or University of Third Age, be a support worker at a local education centre on a phone when needed basis. Be a telephone contact as part of a support group, anything to keep the "little grey cells" going. I am trying to find something I can now manage. Had to retire in 2008, and get anxiety attacks when going out, also recently been very weak, and find my stairs in/out almost impossible. Am 66 but still have a brain, so looking at what can be done using phone/internet. I had CBT from a very good Therapist using the phone, and a friend had it with somone over the internet. I certainly know that I gained more from my job, than my patients/clients. I know it is my problem that so much of my identity is bound up with what I did as a job, but I feel if is worth looking at all the skills you had/developed and then look at them side ways, to see where you could help someone, even if only 2hrs a week to start with. Sorry I have gone on so long, a bee in my bonnet!!!!