Ulcer and excruciating pain at bottom - can't cope
I was diagnosed with IBS in my 20s (now 50) but I think I have had Crohn's for a while now but just recently diagnosed after becoming extremely poorly after christmas.
The diagnosis has taken for ages given the strikes etc and I've been suffering in extreme pain without treatment for weeks. I finally have an appointment with the IBD team next week but care has been lacking I feel.
My main pain is coming from an ulcer that is right at my bottom area - it has been excruciating. I just don't see how I can get back to work unless that is cleared up. I can't sit or walk without pain. Do meds clear the ulcers up?
I am really worried about not getting back to work.
Any advice will be so helpful.
I'm so glad that you reached out here. It pains me to hear that you've gone through so much pain without the correct diagnosis or treatment. I can hear how difficult this has been. Please know that our community is here for you, and I hope that some community members here can share any tips they have. Hopefully your upcoming appointment can shed some light on what you're experiencing, as well as provide you with some relief. Please keep us posted with how it goes this week. Sending you gentle hugs. -- Warmly, Christine (Team Member) Thank you Christine.
I did finally feel some support this week from the consultant and nurse but going back to basics with tests so a waste of last 3 months.
He doesn't think it's Crohn's cos of an odd ulcer. But then what?
But my the pain in my bottom just changes...felt bit better one day and then crying out in pain that my daughter heard. Very distressing.Hi Richard, I know there are 4 ulcers intotal throughout but they've said twice now that one doesn't fit the 'normal' pattern for Crohn's. He did show me the image of it and he said something about the edges of it I think. He wanted to do some more different tests on the biopsies and an MRI scan.
Thanks,
LisaWhile I'm glad that you've gotten some support this past week, how very frustrating to be back to the basics. It certainly can feel like a waste of the time that's already passed. I really really hope that they can get more testing done so that you can get some answers! Answers usually lead to a treatment plan for relief and I can hear just how much relief is needed for you. We hate to have our kids hear us cry out in pain and can understand how distressing that was for both you and her. We are here for you! -- Warmly, Christine (Team Member)
Have you been able to return to work? Did the consultant/nurse offer any pain relief/treatment? Medications can be really helpful, but I say that not all medicines work the same for everyone. Each body is different. So what works for one may not work for you. Also, I would seek out another physician if you are not pleased with the treatment you've been receiving. Over the course of my 30+ years with UC, I've had to "fire" (or ditch) doctors. I've learned that not every doctor is patient, kind, or willing to listen. So, I move on if I believe that a doctor doesn't have my best health interest at heart. Please let us know how the pain is going. I hope you've been able to get back to work. We're here for you. --Traci, UC-IBD Team Member Hi Traci, I'm not back at work. I'm unable to sit for any length of time for the pain in the bottom area. I also get so tired. They've prescribed me some hydro cortisone cream to use twice daily.
Can I ask if any other people also struggle to just go and have a wee 'normally'? I can't often - I always have to have a bowel movement of sorts with pressure. Often it's just a plug of mucus that comes out but is always extremely painful.
I hope I get some appointments but there seems to be such a back log on everything.
I've also become scared of what I can or can't eat.
Thank you for being in touch,
LisaI'm sorry I didn't see your message sooner. You might want to ask a doctor about your iron level since you feel so tired. You could be experiencing anemia, but only bloodwork can determine that. I hope the hydrocortisone helps with relieving your pain. I've not even thought of that. I wish I had in the past when I'm in the midst of a bad flare.
As for the mucous, yes, I've experienced that pain and pressure. It's disheartening, isn't it? A short stint of prednisone usually helps clear up my mucous discharge as well as bloody diarrhea. I don't like being on a steroid, but sometimes I choose it because it's a cheap and fast way to turn around my gut. It often buys me a little time when other medicinal treatments need approval time from my health insurance. Does that make sense? Also, some medicines take a little time to begin working (at least in my gut). So, prednisone helps put me on a path to recovery before other treatments begin to effectively work.
As for the backlog of appointments with physicians, are you able to call and check on cancelations? I do that sometimes when I need to get in faster. I'll bug the heck out of my GI's office by calling and asking if anyone has canceled their appointment. But maybe that's not possible where you live?
Finally, it when comes to what you can eat, many folks in this community suggest going on a liquid diet temporarily as a way to "rest" your digestive system. I know it's not the "ideal" way to eat, but sometimes our guts (and our mental state) need a break from the chaos of inflammation.
I hope what I've written makes sense and helps in some way. Please let us know how it goes for you. I'll be sending positive vibes your way. Air Hugs!--Traci, UC-IBD Team Member
Thanks Traci. I've phoned the secretary today who was very helpful but found out I'm on a 3 month waiting list for a next appt. Couldn't believe it. She's hoping this will change once the MRI scan has been done on the 12th July but can't be sure.
I'm wondering if I have a fissure or something. I can feel something on the LH inside and I have continual leakage.
One thing I wondered if someone could advise about is whether there is any cushion or something that would help me to be able sit. I've read that donut cushions aren't recommended as they can cut blood supplies off?
I have to try and get back to work but sitting is a problem. If that could be made better then I could maybe at least try. I'm beginning to worry about losing my job through not getting treatment.
thanks for all your support.
Hi
. I have seen some references to donut pillows potentially having pressure sores as an issue. I don't know about circulation problems. A search on cushions for IBD brings up a number of options, but I can't personally speak to them. Your doctor may have some thoughts on what would be best for your situation and hopefully others will chime in on what has helped them. Best, Richard (Team Member)
