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Feel like I’m at my breaking point

Hi all,

I was first diagnosed with UC, ulcerative proctitis to be exact, when I was about 20, which was roughly 15 years ago. I was afraid to tell anyone what was going, with the mucus, blood and urgency, but then finally after about 8 months I did and got a scope, a diagnosis and was prescribed mesalamine suppositories which did the trick in about a weeks time. Fast forward to beginning of 2019, many of the the same symptoms came back. Had a full colonoscopy in 2019 and was my diagnosis was reaffirmed. I ended up in the ER the night of the procedure from what we think was transient bacteremia. I went back on the suppositories, then enemas, then orally, not having much success with any. My symptoms were annoying and difficult to live with but at this point, I would give anything to go back to where I was. At the beginning of 2021, after having no real success for 20 months or so, my doc put me on a short course of steroids, prednisone. Things may have got a little better the first two weeks but then I started noticed upset stomach, burning, pain, and having to get up at night to go to the bathroom. As I continued to taper, things got awful. I was in such pain. Abdominal pain and burning everywhere with no relief. And the few days I want off it completely, I was doubled over in pain, going to the bathroom 20 plus times a day, with unrelenting pain and excruciating pain when going to the bathroom with tremendous amounts of blood. I was forced to go back on and try a slower taper. Though it’s not as severe, things are still awful. I can’t get off the prednisone because things get unbearable but my symptoms are so far off even on 30 mg. I tried to taper, but things go bad, and had to go back up but now things seem just as bad at this dose. My bowel movements are extremely painful. I get up 5 times a night to just let a little puss out. Some days my stomach area is on fire. I sometimes have upper gi symptoms too. The pain in my lower left abdomen never goes away and my rectum is so sore all the time. I also get some pain and bubbling in the right lower quadrant. I never really experienced pain before I started the prednisone. It was a nuisance and there was blood, mucus, urgency and some other annoying symptoms, but now I have all of those same symptoms, worse and I am in discomfort all the time! I feel like the prednisone is somewhat to blame. Either directly causing issues, or sped up and progressed my disease to very severe. My sed rate was 24 before I started the prednisone, which is mildly elevated and my crp was 0. Now after basically 4 months of being on prednisone, my sed rate is 58 (significantly elevated) and my crp is 7 (which is still high normal), which just doesn’t make sense to me. I started humira 4 weeks ago but have seen no improvement from that yet either. I hate taking all these meds, with all their risks, especially when it seems they have done nothing other than worsen my ailment. I can’t take this much longer. I do nothing but lay around in pain all day. I didn’t even know flares could last this long with no sign of getting a little better. Has anyone experienced anything like I am describing? If so, did it get better and how? I also am beginning to question my dx. Maybe this isn’t uc. Maybe crohns. Maybe something else or something on top of IBD. I am so miserable, sad and frustrated. If anyone can offer any insight, I would much appreciate it.

My best to everyone else out there struggling from IBD or anything else for the matter.

God bless

  1. Hi Dave
    I am so sorry to hear how you have been suffering with your symptoms. I hope that Humira starts to give you some sign of improvement soon. I know it can be variable in people with regard to when people notice benefit. I do think you need to make your Dr fully aware of how you are feeling and the full extent of your symptoms and how you are feeling mentally about the whole situation. I think it’s also important to ask lots of questions when you next see Dr. such as why your ESR could get worse whilst taking Prednisolone as this sounds a bit odd.
    You mentioned that you tried to taper your prednisone dose down, is this something your Dr has asked you to do? Everybody hates taking drugs, particularly prednisone, but it doesn’t sound like it’s a good move at the moment, particularly if symptoms are not under control. You sound at a very low ebb right now but things will improve.

    I have Lupus and Rheumatoid Arthritis and episodes of inflammatory bowel disease, it does get me down from time to time and sometimes think, haven’t I got enough going in as it is? I am currently having bowel problems and spent a few nights in hospital after being admitted to A & E being treated for a gastric infection and discharged. I didn’t have an infection and I’m back to square one. I have got a blood test scheduled for Thursday and hope the results throw light on my problem as I have chronic green diarrhoea, stomach pains, this has been going on for 4 weeks now. I have been referred for a gastro appointment, but I think I may have to pay to see someone privately as NHS appointment may take a while yet because of Covid backlog.

    Anyway, getting back to you, contact Dr make sure he’s fully aware of all your symptoms and don’t understate them about how you are feeling. Look online to see if there are local support groups in your area too. I hope that you begging to feel better very soon and I wish you all the best.

    1. I really appreciate you taking the time to reach out and share your own experiences and thoughts. I correspond with my doctor quite frequently; so he is in the know about everything. Going to check for c diff and celiac this week just to check some more boxes.

      I hope you get your issue resolved and feel better very very soon.

      Thanks again and god bless.

  2. My heart goes out to you 1. I am so sorry that you are going through all of this, and I know how frustrating it is to not feel well and feel stuck.

    In my personal journey, I found after four hard years that I needed to attack this diagnosis from many angles. For the first four years I just listened to my doctors which meant just being put on medications and that was it.

    I found that I needed to put in more work. I had to change my diet. Really cut out sugar was first, I had major bacteria overgrowth. Sugar feeds bad bacteria. I also cut out dairy and wheat products. I then Made sure I ate mostly organic and non-processed. I took supplements like vitamin D, a multi vitamin, and probiotic. I soon started to feel better but it took so much discipline. I also made sure my stress was low and that I was spiritually healthy. Soon, I was able to add light exercise like yoga. I did all this while on medication and soon I started to feel better and heal.

    I know everyone's journey is different and I figure I just share mine to see if it can help. Don't lose hope.

    Don't hesitate to message me if you want more details.

    Hugs, Elizabeth (team member)

    1. diet is definitely something i have tried to change with this flare but it is quite difficult to stay consistent. I am actually getting checked for celiac this week to check if that is causing issues on top of the UC and also a c diff test.

      I really do appreciate you taking the time to reply and share insights and personal experiences. I am so glad you seem to being doing better with the meds and diet changes combined.

      If you don’t mind my asking, what meds did you take/do you take that helped you get things under control, and allowed you to feel better and heal?

      Thanks again and god bless

    2. I don't mind at all. I am currently taking Xeljanz. It is a pill, I take twice a day. I take a vitamin D supplement, a multivitamin and a probiotic daily. I eat pretty well, although I do have my days. Wheat is a big trigger for me so I try my hardest to stay away from it. I can handle salads so I do that a lot with chicken. I can also handle cooked vegetables well. I big thing for me however, is lowering my stress levels. I switched careers. Started working from home. It has made a huge difference for me. Oh, and recently I started drinking Kefir. If you don't know, Kefir is fermented milk. It has helped me so so much! -Elizabeth (team member)

  3. , this must be so hard...
    I don't have any medical suggestions, except that I was on prednisone and it helped a lot. I then went onto Humira and went into full reason. So I don't know why it's not working for you. I guess everyone's body is just different.
    But I do have other suggestions. About you being in bed all day, it's not good. I know that you're in pain most of the time. But I suggest getting out a few times a day when you're not feeling so bad. Being in bed all day makes you focus on the pain and feel it more strongly. If you'd be distracted by socializing or working at home, the pain won't be so blaring. It also makes you feel stressed and low. I believe you need more distraction and fulfillment right now.
    Back to your physical pain, it sounds impossible! Maybe try eliminating some foods from your diet? Also, if your meds don't work, there are many other meds out there that might work. What does your doctor say about trying a new medication?
    Update us as soon as you start feeling better, we want you healthy again! May God make you recover right away.

    1. Thanks so much for sharing. Still in a pretty bad spot. Can't get off prednisone because I get really sick but it also doesn't do enough to make me better. I failed Humira unfortunately as well, so I have stopped that and will be trying Stelara, getting my first infusion Thursday. Nervous about the infusion and just taking yet another med that suppresses my immune system but if it works and helps me off the prednisone it will all be worth it. Hope you are still doing well!

  4. hi Dave, I've only just read your post, but have been going through the same for the past year and a half, I was diagnosed with UC 14 years ago, my specialist seems to think it's now Crohn's, and proctitis, I've recently had more scans and examinations and waiting to see him next week for results, but like you I can't believe I've been on a constant flare for this amount of time, I did find that metronidazole suppositories did help for a while and I've recently started taking manuka honey one tablespoon a day 15plus, seems to help also, and for the butt pain I highly recommend getting a toilet pan/bidet from Amazon you can fill with hot water, really helps with the pain, I couldn't be without mine....hope you get some answers soon

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