Crohn's Disease isn't on the ease: What treatments work?

Posted by mary0thomas @mary0thomas, Jun 14, 2021

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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

Hi @4200wishyouwerehere and welcome to Mayo Clinic Connect. My sincerest condolences on the passing of your husband.

How long did he suffer with Crohn's?

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@amandaa

Hi @4200wishyouwerehere and welcome to Mayo Clinic Connect. My sincerest condolences on the passing of your husband.

How long did he suffer with Crohn's?

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Over 10 years, we were not educated about the Risk of crohns disease and having crohns disease over 10 years, without control Crohn's disease is deadly. African Americans lack understanding, and information to make an educated discussion. Communicate and understanding need to improve.

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@4200wishyouwerehere

It sounds like you know what's going on with your body. However, what are your doctors saying? What is the next step in trying to control the pain? You must "control" the pain. My husband passed away June 1, 2019 from complications of Crohn's Disease. The Crohn's Disease turned into Small Bowel Adenocarcinoma/Cancer. He was on Remicade too, however, none of the biologics therapies never worked.

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@4200wishyouwerehere…..I am very sorry to hear about your loss. 🙏🏽💕

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I have had GERD and Schatzki ring issues for years. Now I have been told my flareups are due to Crohn's Disease. I am reading and learning about this disease but also finding that each case can be very different. I guess I am just wanting to find some who can relate. The diet and exercising is where my focus is now. So is the diet for flareups very much the opposite to remission except no sugar, processed foods, or alcohol any time? Exercise limited during flareups too? I would appreciate literature that anyone can suggest also.

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@vivianm

I have had GERD and Schatzki ring issues for years. Now I have been told my flareups are due to Crohn's Disease. I am reading and learning about this disease but also finding that each case can be very different. I guess I am just wanting to find some who can relate. The diet and exercising is where my focus is now. So is the diet for flareups very much the opposite to remission except no sugar, processed foods, or alcohol any time? Exercise limited during flareups too? I would appreciate literature that anyone can suggest also.

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Hi @vivianm and welcome to Mayo Clinic Connect. You'll see that I moved your post to a conversation about Crohn's so that you could interact with people who are going through similar situations.

I also want to introduce you to @sandyjr, @purnamaboss, and @4200wishyouwerehere who have spoken about issues you have had as well.

-Crohn's Disease in Women: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3804567/

Can you share with us what exercise you were used to in the past? Did you focus on anything particular that could be modified? Same with your diet, specific likes?

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Hello! New here. Looking for info on Crohns. I was diagnosed today.
Hey I have PsA, AVN unknown etiology, and Fibromyalgia. I am a brain tumor survivor.

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@nanajoy

Hello! New here. Looking for info on Crohns. I was diagnosed today.
Hey I have PsA, AVN unknown etiology, and Fibromyalgia. I am a brain tumor survivor.

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Hi @nanajoy and welcome! Just as I moved @vivianm's post above, I moved yours as well so that you could connect with people suffering from Crohn's Disease. Can you share with us a little more about your diagnoses? What symptoms where you having that led you to seek medical attention?

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@amandaa

Hi @nanajoy and welcome! Just as I moved @vivianm's post above, I moved yours as well so that you could connect with people suffering from Crohn's Disease. Can you share with us a little more about your diagnoses? What symptoms where you having that led you to seek medical attention?

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I have PsA ( dx2 yrs) Fibromyalgia, AVN, and had a really bad flare for over 8 weeks. Incontinence, and pain, bloating, wt GAIN not loss (fluid?), explosive diarrhea that caused sleep disturbances. Nothing worked to stop or slow. Took Bentyl which helped but did not resolve. Saw GE she did a ton of labs and I tested positive for markers and am awaiting biopsy. Was just told Tuesday it’s Crohns but waiting for bd results.

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@nanajoy

I have PsA ( dx2 yrs) Fibromyalgia, AVN, and had a really bad flare for over 8 weeks. Incontinence, and pain, bloating, wt GAIN not loss (fluid?), explosive diarrhea that caused sleep disturbances. Nothing worked to stop or slow. Took Bentyl which helped but did not resolve. Saw GE she did a ton of labs and I tested positive for markers and am awaiting biopsy. Was just told Tuesday it’s Crohns but waiting for bd results.

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Hi @nanajoy You’ve come to the difficult part of any diagnosis—the waiting. If you’re like me, you think of all the what ifs and bad things.
Has the doctor given you any idea of a treatment plan? How are you keeping yourself positive during this time?

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@becsbuddy

Hi @nanajoy You’ve come to the difficult part of any diagnosis—the waiting. If you’re like me, you think of all the what ifs and bad things.
Has the doctor given you any idea of a treatment plan? How are you keeping yourself positive during this time?

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Because of my nursing background, I self advocate. I learn as knowledge is power.
I’ve begun changing eating - decreased red meat, decreased whites ( rice, noodles, etc), decreased sugar, decreased processed foods. Following closer to a Mediterranean diet. Taking bentyl on a regular basis. Joining this group. Lots of prayer and positive scriptures that the Lord has for us.

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