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Crohn's Disease isn't on the ease: What treatments work?
I posted on here sometime before in December of 2020 with the news that I was diagnosed with Chrons disease that was heavily concentrated in the small intestine. Since then I have been on Remicade treatments and have seen no improvements to my condition. I have had my Prometheus levels come back saying that I have formed no resistance (antibodies) to my medication, and there is a high chance of having an infection in the gut that is making the Chrons flare stay. What is worse is that my symptoms have seemed to ravage me far more than what they had done in years previous. My symptoms used to be every other day maybe twice a week, and now they are here to stay 24/7, with a little mild irriating pain here and there that I manage and use work to help me ignore. I have been having black tarry stools on and off again for the past three years, but for the past three weeks, I have had nothing but black stools and intense stomach pain every time I use the restroom. I waited 6 hours to get into the ER by the advisory of my nurse a week ago. There it was confirmed that I was still having blood in the stool, I had recently developed a UTI, and my liver's alanine aminotransferase was at 143 and the aspartate aminotransferase was at a 98. That is around 4 and 2.5 times the normal amount of enzyme production for the liver. I also today was told that my stomach was biopsied and it had intestinal metaplasia, which was likely from the H. Pylori I had when I was 17 that was treated. I feel horrible, lightheaded, nauseous, and have fevers that will reach 100.4 every day. I eat bread only to find myself in pain for hours and then falling asleep in my room from the exhaustion. I wake up often feeling worse and I hate undergoing this cycle as I am trying to get better. I move out in 4 days, I'll have to stay for a month in a place where there is nowhere for me to break down when I feel nauseous and in stabbing horrible pain. I do try to eat so that I avoid being malnourished, but it's hard when my body is rejecting the bland foods that I am giving it. It is slowly starting to feel like my body is withering away and it's frustrating to not have control over it. I have tried prednisone and budesonide with no improvements and only facial swelling, and I have also found that Tylenol will not reduce my fevers but will only sometimes ease the stomach burning/stabbing sensations. It is embarrassing being reduced to tears at my workplace over severe stomach pain and urgent need of the restroom while my body becomes akin to fire. What is worse is when constipation occurs, as I will use everything to try and use the restroom to no avail. Miralax, stool softeners, and once even magnesium citrate were to no effect. I am exhausted. I do not want to waste any doctor's time, but this is getting worse and it's taking me away from everyday life and everything I love. Besides the continuous contact I try to have with my doctors, it is very difficult to get the time or the answers. For the past year, I've practically been relying on a low fiber low residue diet and guided meditations to help me breathe through it all. And yet as I've been experiencing, they can only do so much.
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Good morning @mary0thomas Haven’t heard from you in awhile . Is everything going OK? Have the doctors been able to help you?
I am a Chron’s patient diagnosed 2017 now with complications That sent me twice to er in 5 days. Cat scan shows inflammation in small bowel and thick wall. I am currently taking 40 mg predizone. Waiting on labs particularly the antibody test to help show if body is possibly rejecting Entyvio
I have been on Entyvio infusions since January and has made a world of different in how I feel, almost feel normal. Still can’t gain any weight.
Hope you’re not rejecting Entyvio, please keep us posted.
I was diagnosed with Crohn's 5 yrs ago on my 50 yr routine colonoscopy...at the time I was asymptomatic.
I'm now in my 3.5 th yr of an abusive marriage...the stress is so bad that it has activated the disease. I'm in so much stomach pain and nausea...especially when I try to eat.
When she screams at me...alot...my stomach immediately goes into spasm...which I take bentyl...kinda helps...bud.steroid med made it hard to breathe....im allergic to nsaids....I dont want stuff with dangerous side effects....im taking probiotics...2 different bottles...plus nutrition shakes from dietician from VA. I cut out a lot of fatty foods and gluten....my dietician told me chrohns pts can't break it down...
I'm building up strength...locking myself in my meditation room to get away from her and let my mind heal...it helps some too...relax cds...
I still have bloating even though I'm losing weight...so my tummy looks big...even though I've lost recently 30 lbs.
I'm really scared about all this. My gi Dr said my ct scan showed swelling of my colon.....and my labs were of someone with chrohns...what that means..idk..but I don't like it.
I cry all the time. I'm full of fear. I dont want to die yet. I beat so many things in my life as a result of the Army....I want to live in peace so bad.....this is my time to enjoy life...not to be sick.
Yes....I am taking care of the instigator... Its in the process.
I'm afraid of how that's going to go over as well.
My colonoscopy is in August. I just need a ride....bc I can't drive myself....and my wife has to go to a hearing..surprise surprise....
I'm lying in bed now thinking....I wish I ate some fruit or veggies 2day...I feel so out of whack....like I eat poorly. That's not usually me.
I need to exercise too...that was also my life...she screwed that up 2.....the pain makes it hard...plus fatigue and weakness.....but I'm getting stronger with shakes and liquid vitamins. I need to build muscle back.
I'm still scared. Thought about it today in my room and started hyperventilating. I think it was a panic attack
I'm eating Ativan to calm down and sleep....its saving my butt....
No pun intended!! Lol.
I'll leave with that.....since it's kinda on the more humorous side.
Peace always. Aud.
You poor thing, you do not need all this stress with your illness. Please get out of the situation and get some help with your GI issues. Do not be a victim. Very concerned about you.
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1 ReactionHi, I’m new here. I was diagnosed with Crohns on 2005. I started on mesalamine and that worked by itself for a few years until my first pregnancy in 2007 when my Crohns got much worse. Over the next several years I tried several different treatments along with mesalamine, humira - failed; Cimzia- worked for Crohns but got frequent uti’s and pneumonia several times; stilera- failed. I’ve been on entyvio since 2018. My insurance changed a few years ago and mesalamine was no longer covered and I had to stop it. Tried a few different variations but they didn’t work. In 2020 several polyps were found in my colon and I had a total colectomy with ileorectal anastomosis. After surgery I continued on imuran and entyvio monthly and went 1.5 years without a flair. I had a flair in June and another started a few weeks ago. I’ve been on prednisone for 2 weeks and I’m still having pain. What else can I do. I’m so discouraged that I keep having flairs after all I’ve been through. What other treatment should I look into? I’d like some ideas to talk to my gi about. Thanks.
@rjmobe, I wanted to check in to see how you are doing. Fellow Crohn's disease members like @karee @carolyne @sage50 @nanajoy @mothermary1 @brenda9417 @dg0797 @suetex and others can share their experiences and treatment options that worked for them.
Did your GI start you on new treatment? How is it going?
Hi Colleen,
Thank you for checking in with us. I started Stelara in August 2022 and have been doing well. I also recently stopped taking mesalamine and haven't had any issues. Having had Crohn's since 1990, it's nice to be symptom free. Now if only my joints would cooperate 🙂
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1 ReactionYou have really been through the ringer! As I mentioned in my other post, Low Dose Naltrexone has really changed my life. Unfortunately, American docs haven't really bought into it yet. And the organization that gives protocols for GI docs are just now giving it a serious look. It's big in Britain and the LDN Research group have put out a lot on it. You can find them on the web. I had to go to my rheumatologist for it and it is compounded. But few, if any side effects. Give it a look/see and start asking your doctors. Best of luck.