Feeling low

[Buddy27]

I’ve never really spoken to anybody apart from my family about my health issues and I’m finding myself feeling quite low so I thought I’d give this a try and see if anybody has a similar situation...

I have Ankylosing Spondylitis , diagnosed approximately 20 years ago and I also have ulcerative colitis. Long story short, what they thought was a mass on my pancreas has turned out to be pancreatitis. I now have to wean myself off my azathioprine which they believe has caused this. I’m worried because every time I come off it I end up back on steroids as my ulcerative colitis flares right back up. I am also on Humira for my joint problems and tramadol.

Does anybody else have similar conditions which get them down and get fed up with taking drugs and would like to feel normal again?!??

[Pablo7]

Mate , I have UC and there has been many a time of really low days , but i have right combination of meds at moment .

Do you have any help for these days?

Paul

[Hobbits]

Hello. I have RA and Crohns.

I go through periods of feeling lowly, as you get sick n tired of being sick and tired. I do not have Ankylosing but for some reason my Rheumatologist seems to be on a mission to find this in me. It’s getting a tad tiring. I have never had an issue with my spine. I get question after question about whether I have any back pain, and I do not. Back exam everytime. My Rheumy had a thought that my RA is linked to my Crohns but my two diseases act independent of one another.

My Crohns flares occasionally and my RA flares occasionally, and indeed a few times happened at the same time by overlapping a day or two, but the two never in perfect tandem. I’m not sure if that is just coincidence . Certainly everytime I have a Crohns flare I do not have severe joint swelling and painful joints and visa versa.

I’m a bit of a rebel right now because I refused the Remicade they tried to put me on a month ago. I am insisting to first get results from my MRI which I get today of my bowels. Once I see the results I will decide what treatment to proceed with. My Crohns went into remission in October after I stopped eating and went in a liquid diet, it seemed to heal my Crohns. I am now following a strict SCD lifestyle diet healing my microbiome and it is working, for first time in literally years and years I don’t have severe bowel pain and diarreaha. Living everyday with that has caused me to just want to give up from feeling so tired all the time. For the first time in longer than I can remember I am less tired and have no bowel pain

I know I’m not cured, I have a stricture, and I’m told Crohns is a disease I will have for life - how I manage it is the one thing I can control - but I want to see MRI first so I know what I’m dealing with, once I know I can then make a better informed decision on any medications

Currently still on Enbrel for my RA and it’s working well.

All I can offer for advise is to take one day at a time. I’m not a fan of the medication merry-go-round either, but I will take them if I know they are absolutely necessary. Wishing you all the best and just know that you are not alone in your struggles.

[Angep in reply to Hobbits]

It’s great to hear your doing well, I know you’ve been so poorly!!! How did it go with your MRI? Hope it was good news 🤗

[Hobbits in reply to Angep]

Just had MRI yesterday. It was not as easy as I thought. I drank my 5 very large glasses of that sweet water with the contrast dye. Then unbeknownst to me I needed an IV with another type of dye. Then the gave me two seperate doses of Buscopan. I stopped taking Buscopan years ago as it affects my heart. I thought I was having a heart attack almost as soon as the put it in my IV, the nurses told me how my heart rate became very elevated. They waited until the feeling of having an elephant in my chest went away. But I got it done!

No results yet. My next Gastro appt is not until the end of January, but I will give it a week for the hospital to send her my results and then call her to see what the results are. I am hoping for good news as I seem to have gone into remission and got my fingers crossed that it lasts.

I read Breaking the Viscious Cycle and following a strict SCD diet. It seems to agree with me.

How are you doing?

[Angep in reply to Hobbits]

I had the same mri a few months ago. They didn’t give me the buscopan because I’d been having chest pain. What a carry on they should have asked you if you had any problems with it!! Great news you think your in remission 😁👍has your fatigue gone as well?? I’m lucky I don’t have any pain. I have in the past but I thank god I don’t now. Fatigue is. My downfall at present. I need to see my doctor but just haven’t had time. I’ve still got work going on in my house. My floor was to be tiled a week ago and the rulers yanked out my washing machine and dishwasher and flooded my kitchen again!! I had a new front door fitted same day and didn’t realise they fitted one of the glass panels upside down!! I seem to attract workmen who are morons quite honestly!! It’s been stressful but I’m trying so hard not to let it affect me.crazy world!!! 😬😬

[Hobbits in reply to Angep]

😂😂 it’s very hard to find decent workmen, honestly the good ones are worth their weight in gold.

We had issues with a painter we hired to paint the outside of our house

We have decided to tear out upstairs carpets and put in hardwood to match downstairs. We will be doing the work ourselves as we also had it with people who make big promises and then do shoddy work - I’m gonna be more of the assistant, really this is hubbys project

Glad to hear you are pain free, this is what I think everyone strives for. It’s amazing when it happens.

I wouldn’t say my fatigue is gone. I have another autoimmune disease RA which also causes bad fatigue. I would say my fatigue is gone by about 1/2. I’m keeping my fingers crossed for continued remission and a good MRI result, I’m hoping it shows that my inflammation has gone down. I was not keen on the idea of surgury or taking a long time off work, need to keep the money comming in.

Honestly I don’t know why my Gastroentrologis did not suggest diet, as a means to control symptoms as she only seems to want to push medications. I’m not sure if she would say my diet put me into remission or if it was just a spontanious remission. I will be interested to hear what she says.

If it comes down to it and I absolutely need Remicade then I will consider it, but something inside is telling me I don’t need it.

One day at a time.