Crohn's Disease that isn't on the ease

Posted by mary0thomas @mary0thomas, Jun 14 5:51pm

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.

Hello @mary0thomas It sounds like you are having an extremely difficult time with Crohn’s disease. II’m going to ask @astaingegerdm and @colleenyoung to respond to your posting.
When did you last see your doctor? Are you seeing your PCP or a rheumatologist? A gastroenterologist or a rheumatologist would be the best to help you. Try to hold on until they can respond

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@mary0thomas – I’m sorry to read how miserable you are! First of all- don’t even think that you are wasting a doctor’s time!!
Do you have a good gastroenterologist? If not, you have to find one- preferably at a university hospital.
Since you have severe illness in the small intestine you are most likely malnourished. It sounds like you need to get nutrition- proteins, fat, minerals, vitamins through IV feeding. Did you have that before?
You are also bleeding most of the time which will cause anemia- your blood counts should be checked now. The blood carries oxygen to the tissues and help in healing.
Not everyone responds to Remicade. There are other treatments too.
Let us know soon if you have an appointment!

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@astaingegerdm

@mary0thomas – I’m sorry to read how miserable you are! First of all- don’t even think that you are wasting a doctor’s time!!
Do you have a good gastroenterologist? If not, you have to find one- preferably at a university hospital.
Since you have severe illness in the small intestine you are most likely malnourished. It sounds like you need to get nutrition- proteins, fat, minerals, vitamins through IV feeding. Did you have that before?
You are also bleeding most of the time which will cause anemia- your blood counts should be checked now. The blood carries oxygen to the tissues and help in healing.
Not everyone responds to Remicade. There are other treatments too.
Let us know soon if you have an appointment!

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I do have a good nurse practitioner that primarily handles and takes care of my visits and operations, and there is an overseeing doctor but I’ve never had a one on one visit or anything to meet this person. I have had blood tests done but they always say I’m practically fine except for the occasional liver readings. I’ve also never had IV feedings even though my ability to ingest practically anything has just gone out the window for the most part. I do move soon so I need to find and set up with a new doctor, and I heard Wash U in Saint Louis would be excellent- but I cannot seem to find anyone in my insurance’s network that works there. Plus I get dizzier and just feeling worse each day. One of the on call doctors just said “yeah that’s your Chrons causing that” as if I was asking for them to look for more things to diagnose me with rather than just saying that I’d like to get better and this method hasn’t been working. I do have an appointment for a capsule endoscopy I believe on Wednesday and I had recent blood work done probably two days ago- but the results that have come out do not pertain to the liver enzymes so I suppose I’ll have to wait for those results

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How did the capsule endoscopy go?
Did you get any results from the blood test?
You are looking for a new gastroenterologist when you move- you should be able to contact your insurance company about who is in your network- especially at the Wash Uni that you are interested in. It should be in their interest to get you the best treatment since you are quite sick with Crohn’s and want to avoid lengthy hospital stays.
Your liver enzymes are elevated , but they are not that bad. Do they know why? Medicines?

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Has your gastroenterologist requested an abdominal MRI? It may pick up things that a CT is missing. You should definitely keep a watch on the bloody stools, and diarrhea, those can be symptoms of other things besides Crohn's disease.

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@brenda9417

Has your gastroenterologist requested an abdominal MRI? It may pick up things that a CT is missing. You should definitely keep a watch on the bloody stools, and diarrhea, those can be symptoms of other things besides Crohn's disease.

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Welcome Brenda. Great advice. Do you also live with Crohn's?

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@colleenyoung

Welcome Brenda. Great advice. Do you also live with Crohn's?

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Thank you. Yes, I do. I had an MRI recently, and it revealed other issues that were causing my lower right side abdominal pain, not being detected by CT Scans (a cyst inside my spleen, a very concerning multioculated cyst in my pancreas, and a few other issues). I have been on both Azathioprine and Budesonide, yet still had excruciating (take you to your knees) abdominal pain and diarrhea (5-8 x a day). They found that my Crohn's actually was improving, but these new findings are a bit concerning and they believe this is the cause of my continued pain and diarrhea problems. It is worth a look, for sure, if you are on immunosuppressive meds and still having problems. Especially if your CT scans are coming back good. I am very thankful that my gastroenterologist took me serious enough to look closer, as the pancreatic cysts was described as appearing to be an IPMN.

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@brenda9417

Thank you. Yes, I do. I had an MRI recently, and it revealed other issues that were causing my lower right side abdominal pain, not being detected by CT Scans (a cyst inside my spleen, a very concerning multioculated cyst in my pancreas, and a few other issues). I have been on both Azathioprine and Budesonide, yet still had excruciating (take you to your knees) abdominal pain and diarrhea (5-8 x a day). They found that my Crohn's actually was improving, but these new findings are a bit concerning and they believe this is the cause of my continued pain and diarrhea problems. It is worth a look, for sure, if you are on immunosuppressive meds and still having problems. Especially if your CT scans are coming back good. I am very thankful that my gastroenterologist took me serious enough to look closer, as the pancreatic cysts was described as appearing to be an IPMN.

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Brenda, you might be interested in this related discussion:
– Cyst on Pancreas? https://connect.mayoclinic.org/discussion/cyst-on-pancreas/

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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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@becsbuddy

Hello @mary0thomas It sounds like you are having an extremely difficult time with Crohn’s disease. II’m going to ask @astaingegerdm and @colleenyoung to respond to your posting.
When did you last see your doctor? Are you seeing your PCP or a rheumatologist? A gastroenterologist or a rheumatologist would be the best to help you. Try to hold on until they can respond

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I wish I knew about this group when my husband was living.

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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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@amandaburnett

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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