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Sigmoid inflammation

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Ulcerative Colitis
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/20/2022 11:50 PM (GMT -8)
Hello all. First time poster. Since the middle of May I have had what I believed to be some sort of hip pain around my ileax crest. At the end of June, my stool become mucus and bloody but never straight D. I went to urgent care and got a CT scan that showed inflammation in my sigmoid colon. NP rules out bacteria and put me on low dose of oral Mesalamine. After some quick research I knew this likely wasn’t a high enough dose. Anyways I got worse and went to ER. Same thing. Did nothing for me. Went to a different one and they got me scheduled to see a GI specialist in August (specialist reviewed records and felt I could wait a month despite my protests over the constant hip pain I am in).

My Primary Care recently gave me steroids. I’m on day three and have went less with less blood.

Here’s my question- the pain from my inflammation, will they steroids help it go away? What symptoms subside first? The ulcers then the inflammation? Do I have any hope of this pain going away and being able to lay down and sleep again?
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clo2014
Veteran Member
Joined : Feb 2015
Posts : 2167
Posted 7/21/2022 8:11 AM (GMT -8)
LJones89,

Welcome to the forum.

It doesn't sound like they gave you a diagnosis yet--correct? Are you suffering from urgency, mucus or blood? Night sweats, fatigue? What did your blood tests look like? WBC, RBC, CRP......

Just an FYI...A GI is not going to address hip pain. He addresses GI issues. The reason he is seeing you is because of the sigmoid inflammation that was indicated on your CT scan.

I have UC and Crohn's disease and I can only share what I've experienced. And when I was first diagnosed my hips and knees hurt so badly that I was sleeping in a recliner with my knees bent outwards like a frog. It was the only position I could find relief.

Steroids have helped my pain--both in the colon and with my joints. It took a few days to kick in. Steroids do not deep heal ulcers. Steroids are a "stop gap" measure utilized to get you by until they can run tests, see what's going on and go from there. Your really don't want to stay on steroids long term. They are dangerous. My back, knees, hips, elbows do not have cartilage in places any longer. The rheumatologist said it's probably from long term steroid use. So follow your doctor's ordersbut try to get off them asap.

Push to get that appointment quicker if at all possible.

Clo
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/21/2022 10:53 AM (GMT -8)
Thank you for the response. I say hip pain but it’s colon pain. My hip appeared to be fine in X-rays and CT scans. I have no official diagnoses yet but the primary doctor is leaning toward to UC. I finished a round do antibiotics as well. I cannot seem to get easy access to my test results. It’s frustrating. The pain from my inflammation is causing me to lose sleep and life. I was just looking for confirmation that the steroids helped anyone else that experienced inflammation pain. I do not plan to stay on them long term. I’m on Lialda right now. Have been for three weeks but wrong dosage. Have since got that straightened out. I’m in a fairly rural area so not many options
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quincy
Elite Member
Joined : May 2003
Posts : 33632
Posted 7/21/2022 11:31 AM (GMT -8)
Hi...welcome to the forum.

You need to request a colonoscopy asap...and a referral to a gastroenterologist.

q
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1958
Posted 7/21/2022 2:06 PM (GMT -8)
Steroids will likely help with the pain if you have IBD but they are a short term solution to a long term problem and these days should not really be a first-line treatment - especially when you don't have a diagnosis. Agree with quincy that you need a colonoscopy ASAP.
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/21/2022 2:33 PM (GMT -8)
Thanks all. The only way I will get one quickly is if I enter myself in to the hospital. Otherwise it appears to be a waiting game. I’ve called a dozen places and it seems lucky I can get into GI august 10th. It’s a complete debacle
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5907
Posted 7/21/2022 9:59 PM (GMT -8)
Welcome to the HW Forum, but sorry you have these problems. It's frustrating to be put off when seeking appointments with doctors; unfortunately that happens more often since the pandemic changed a lot of in-person practices. August 10th now is not that far off. Try taking your Rx med in the meantime, eat a nutritious diet avoiding heavy spices, fats, seeds, excess salt & sugar, keep yourself well-hydrated with plain water, rest as much as you can, and think positively. If you do have an IBD, the hip pain could be an "extra-systemic manifestation" (medical jargon), and it will likely clear up as your colon inflammation gets successfully diagnosed and treated. People with IBD are prone to arthritic-like joint discomfort when their intestines become inflamed. In the meantime, if you feel joint pain near a skin surface, you could try rubbing in some over-the-counter pain-relieving lotion (a 30% salicylate compound can be helpful) or tiger balm. / Old Hat (40+ yrs with left-sided UC; presently in remission taking Colazal)
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/21/2022 10:22 PM (GMT -8)
Thanks OldHat

I am on 7 days of 60mg pred with a two week taper. Three weeks total. First time ever taking steroids. Also I got a new script for enoughMesalamine oral to take the initial dosage someone with a flare should. It’s been rough but hoping for the best. Thanks for the positivity.
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5907
Posted 7/22/2022 5:28 PM (GMT -8)
You're welcome! When I was diagnosed (via C-scope) I had severe UC from sigmoid colon downward, and that affected my sacrum bigtime. It felt like my torso was encased in cement! Then the steroid treated that pronto, TG. So you should be on the road to healing. In fact, 60 mg steroid daily for 7 days is on the high side of dosing if you don't have a severe case; I started at 40 mg for a near-blockage and then tapered after 8 days. The recommendations for C-scope that other forum members posted above are very wise because that exam is the gold standard for determining what's going on with the intestinal mucosa, such as whether your illness is limited to lower left colon or also involves tissue higher up. The gastroenterologist should also order appropriate lab tests, including the blood test markers for inflammation ESR (sedimentation rate) & CRP (C-reactive protein), plus a comprehensive report on your chemicals to be sure you don't have any vitamin/mineral deficiencies making it harder to fight off inflammation. For the past decade many gastros have also latched on to a fecal calprotectin lab test which they expect to correlate with the patient's level of inflammation, but those results have gotten mixed reviews here on the forum. (Some members say their results don't correlate!) My longtime gastro has always trusted the ESR especially. *** Good luck on your current meds and let us know if you have additional questions/issues. Mainly take good care of yourself RE diet + rest to help the Rx meds work most effectively. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)

Post Edited (Old Hat) : 7/22/2022 6:34:02 PM (GMT-7)

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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/22/2022 5:57 PM (GMT -8)
OldHat. I was in emergency room 11 days ago. They took Labs and my CRP was 21 and ESR sedimentation rate was 17. I also showed low potassium for which they gave me a weeks worth of a prescription.

Today was day 5 of prednisone and I can’t tell much of a difference in the pain around my sigmoid colon. It’s quite bothersome. Stools are looking better. Never had D. Like a 6. I’m so exhausted from the pain.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1958
Posted 7/22/2022 6:27 PM (GMT -8)
When i was diagnosed i had pain like i was carrying a knife in my abdomen. It took a few weeks to slowly get better on max dose of mesalazine. Later in another flare up, I took prednisone and the pain went away the same day. But i hate prednisone because I got osteoporosis from being stuck on it for too long. That's why I'm always grumpy on this forum when i see it being handed out too easily. Your CRP is quite high which shows you have some inflammation but it doesn't show where the inflammation is.
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/22/2022 6:36 PM (GMT -8)
My CT scan I had a week prior to that ER trip showed my sigmoid colon being inflamed. Seemed the rest of the colon was not inflamed. I would just like to stress that this has been ongoing and it’s taking forever to get into a specialist. I can’t wait! Primary care prescribed three lialda a day but I’m taking the max dose of 4.8 for now
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1958
Posted 7/23/2022 2:15 AM (GMT -8)
The CT scan won't necessarily show the full extent of the inflammation. I'm sorry you have to wait so long to see a specialist.... I share your frustration
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/23/2022 6:11 AM (GMT -8)
Any suggestions for the pain? It’s unbearable. Tylenol isn’t working much. Not even paired with a hydrocodone. Heat/ice isn’t working well. No topicals or roll ons. Please help!
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1958
Posted 7/23/2022 6:53 AM (GMT -8)
I don't know sorry, other than pushing to bring your appointment with a gastroenterologist forward. If the pain is so bad it could be considered an emergency.
I find certain foods make the pain worse when I'm flaring, in particular fatty/fried/processed foods and high fibre foods like cruciferous vegetables, lentils, so i stick to things which are easy to digest. But it's a personal thing to find what works for you.
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Old Hat
Veteran Member
Joined : Feb 2007
Posts : 5907
Posted 7/23/2022 11:11 AM (GMT -8)
If nothing is working to reduce the pain enough that you find it unbearable, it seems that you need an ER consult. What is the nearest urban area to you that has a major medical center? I ask because you've mentioned being in a rural location. Does your rural med facility have any teleconnection to a larger med center that could advise on your case? The other thought I have is that Lialda may not be helping, or could be aggravating your joint issue. You could try starting a new post here just to ask whether any forum members have experienced negative reactions to Lialda, including an increase in body pain anywhere. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/23/2022 11:34 AM (GMT -8)
It would be St. Louis, Mo. about 2.5 hours away. Our county hospital doesn’t have an affiliation. I truly don’t think it’s the Lialda bc the pain isn’t worse; it’s just bad like since the onset when I truly thought it was a joint or the bone lol.

I’ve only been on full dose for three days i maybe I should stay on it longer for full effect prior three weeks was half a full dose or even less.
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quincy
Elite Member
Joined : May 2003
Posts : 33632
Posted 7/23/2022 11:53 AM (GMT -8)
Ask your doctor for the mesalamine rectal retention enemas...4g dosage.
As well...ask for an antispasmodic. I use dicyclomine 20mg.

Do you have the referral process for a GI in motion?

q
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LJones89
Regular Member
Joined : Jul 2022
Posts : 22
Posted 7/23/2022 12:14 PM (GMT -8)
Thank you. Yes I do. The appointment is set for August 10th. My last ER doc sent the referral. Suggested I be seen in a week. The GI supposedly looked over my CT scan and blood work and determined waiting a month out would be okay. I was a little chagrined bc he based it off of my records without asking how I felt. The stool symptoms are manageable/improved. It’s the inflammation pain that is interfering with my life, work, and sleep.
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1958
Posted 7/23/2022 2:06 PM (GMT -8)
I really feel for you. At my first hospital they never asked me how I felt. During one flare up I told them I have so much pain that I can't do my job and they told me to take paracetamol (I believe that's the same as tylenol?) which of course does nothing. I'm at a different hospital now. We shouldn't have to advocate for our healthcare but often with ibd we have to push to get the care we need. I found telling them I am pooping blood 20 times a day got a far faster response than telling them I'm in pain.
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Anastasiya
New Member
Joined : Aug 2022
Posts : 6
Posted 8/2/2022 10:04 PM (GMT 0)
Hello. I’m also posting for the first time!!! But I have loooong history. I was diagnosed with uc 6 years ago, but I didn’t have that much blood, still they put me on prednisone and Pentasa( mesalazine) and strict diet. After 5 months I stopped prednisone, it did help. I didn’t have the same pain and stools were normal, even if I went 3-4 times a day,sit didn’t turn into diarrhea. I kept Pentasa for 4 years. The doctor said I can stop last year. But I had diarrhea which got worse so they got me in Budesonide. But still no blood then.So I’ve been taking it for 10 months!!! Stopped 1 month ago and I found myself today with mucus and blood!!!! Every time, 7 times I went to toilet today!!! I’m shocked! I have never had blood every time I go to toilet. I have had blood only 5 times during 5 years!!!! And I was living a relatively normal life. I have sigmoscopy in 2 days. Don’t know what’s next for me anymore.
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quincy
Elite Member
Joined : May 2003
Posts : 33632
Posted 8/2/2022 9:05 PM (GMT -8)
Anastasiya...welcome to the forum.

Firstly, you should never have been invited to quit the meds. Secondly, you should also have been on full coverage mesalamine including rectal meds.
What was the original diagnosis loation extent of your UC?

I suggest you request a full colonoscopy rather than just the sig-scope with biopsies throughout.

Looking forward to the outcome (but put it in a separate thread of your own).

q
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Anastasiya
New Member
Joined : Aug 2022
Posts : 6
Posted 8/3/2022 3:09 AM (GMT -8)
Hello. I’m also posting for the first time!!! But I loooong history. I was diagnosed with ice 6 years ago, but I didn’t have that much blood, still they put me in prednisone and Pentasa( mesalazine) and strict diet. After 5 months I stopped prednisone, it did help. I didn’t have the same pain and stools were normal, even if I went 3-4 time sit didn’t turn into diarrhea. I kept Pentasa for 4 years. The doctor said I can stop last year. But I had diarrhea which got worse do they got me in Budesonide.So I’ve been taking it for 10 months!!! Stopped 1 month ago and I found myself today with mucus and blood!!!! Every 7 times I went to toilet today!!! I’m shocked! I have never had blood every time I go to toilet. And I was living a relati
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poopydoop
Veteran Member
Joined : Dec 2018
Posts : 1958
Posted 8/3/2022 4:52 AM (GMT -8)
Anastasiya... I think you need to find another doctor.

Pentasa is a very safe treatment and stopping it was almost certainly going to trigger a flare-up. For most UC patients, drugs are for life.

At the same time, being on prednisone for 5 months is not good treatment practise as prednisone has many adverse (and sometimes irreversible) side effects.

You have many treatment options available to you right now, but you need a doctor who understands how and when to prescribe them.
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