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Weirdest case of Crohn's every?

Hello!
I am a newbie here and wanted to share my story. It is sort of odd and thought I might get some insight from you knowledgable folks.

So it all started a few months ago when I started having a lot of bleeding with bowel movements. This went on for a few days and then I started running a fever and had flu-like symptoms. At that point, it was Saturday of course, I went into the ER. The Dr. did an exam and looked externally and didn't see anything so he prescribed me some painkillers and gave me a reference to a GI. Well the Vicodin helped the fever and flu-like issues but the bleeding was still happening off and on. I made an appoint with the GI, but it was a month out. So I muddled through.

At my GI appointment, he took my history and whatnot and then looked at at my rectum and saw that I had a hemorrhoid. He thought that was my problem and the cause of my bleeding. He gave me some tips and had me come back in a month to see his CNP. I did what he said, more fiber, ect. It didn't help. I still had pain from the hemorrhoid and bleeding off and on. The CNP gave me hydrocortisone suppositories but they didn't do much either. So the next step was a colonoscopy. At this point I really didn't think anything serious was going on and the colonoscopy would be clear.

Well I went for the colonoscopy and when I woke up the Dr. said that my colon looked great so he went a little farther up and found inflammation and ulcers in the ileum. He said they looked like Crohn's and the pathology would be back the next day. The next day the results were in fact consistent with Crohn's. He called me in a rx for prednisone. 40mg for two weeks and then 20mg for two weeks. A couple of weeks after the colonoscopy I went in and saw the CNP and she gave me more pred to continue to taper and Pentasa at 1000mg 4x a day.

Of course, in the meantime, I have been doing a ton of research on Crohn's and I feel like I have a pretty good understanding of the disease. But I know next to nothing about MY case. The weirdness comes in because I don't have the frequent diarrhea that many people do. I have some pain but not debilitatingly so. Bleeding is my main symptom. So that confuses me a bit because on one hand since I don't feel that sick I think maybe my case isn't that bad. But on the other hand the bleeding is bad. Since being on the pred, I haven't had any bleeding and the pain I did have is getting better, so that is good news.

Maybe someone else out there has a similar case and could give some insight. I don't know. I just wanted to share I guess. Sorry this got so long and thanks if you stuck it out this long :)
 
Welcome to this forum. It has been a life saver for me and will give you so much support and information.

That is exactly how my daughter started out, just bleeding.
She has crohns colitis, but has never had diarrhea. she was also misdiagnosed with a possible fissure for 6 months. Then she developed pain. I took her back in and they did the colonoscopy and endoscopy. the bleeding and pain has continued until last week and now she seems to be symptom free. (other than a fever which I believe might be a flu bug) See current medications below.

My nephew, age 34 also has crohns colitis with the constant bleeding but no pain, and I am not sure about the diarrhea.

After our daughter was slowly weaned off the Prednisone the symptoms all came back.

It certainly helped to take her off of all lactose. She had her 6th remicade treatment, and for her, a cortifoam was the final medication that stopped the bleeding and pain.

Wish you the best, and if i can answer any questions, let me know.
 
Welcome to the forum! My son was diagnosed early last year his CD was located in his TI as well and he has no D but did have bleeding when he was flaring. I believe there are a lot of members whose CD is located in the small bowel and the don't suffer from the D as much. Is the blood red or dark to black? Usually when the blood is from higher up it is blackish. You could possibly have fissures as well as the hemorrhoids but that is just a guess on my part. Hopefully someone with more experience will be along.
 
Welcome to the forum! My case is kind of similar. I did have a bit of D in the beginning with blood and mucous, more of the urge to go. I don't have a lot of D now (unless I eat something I shouldn't) and in fact I do get constipated once in a awhile, but have since cut out gluten and starches, and don't really have the constipation problem anymore. I had very bad pain in the LRQ and my lower back. I got DX with Crohn's in the terminal ileum, cecum and rectum. I was never put on prednisone, just Asacol. It took a couple of months to kick in. If I stay real good to a tailored diet, I seem to be okay. Your case might be thankfully mild. =)
 
Welcome to the forum! My son was diagnosed early last year his CD was located in his TI as well and he has no D but did have bleeding when he was flaring. I believe there are a lot of members whose CD is located in the small bowel and the don't suffer from the D as much. Is the blood red or dark to black? Usually when the blood is from higher up it is blackish. You could possibly have fissures as well as the hemorrhoids but that is just a guess on my part. Hopefully someone with more experience will be along.
The blood was always bright red so that is part of what made them think hemorrhoid. And some of it may well have been from the hemorrhoid but it was usually a lot, like the whole toilet bright red. And the bleeding often happened when I wasn't having hemorrhoid pain and then on days my hemorrhoid was killing me, no blood.

I actually was able to get an appointment for tomorrow to see my GI (my next appointment wasn't for 2 more weeks) because I am having issues tapering of the pred. He has me going from 40mg to 20mg and that left me feeling REALLY bad. So hopefully I can learn some more then about my case. I would really like to know how serious my case is.
 
Welcome to this forum. It has been a life saver for me and will give you so much support and information.

That is exactly how my daughter started out, just bleeding.
She has crohns colitis, but has never had diarrhea. she was also misdiagnosed with a possible fissure for 6 months. Then she developed pain. I took her back in and they did the colonoscopy and endoscopy. the bleeding and pain has continued until last week and now she seems to be symptom free. (other than a fever which I believe might be a flu bug) See current medications below.

My nephew, age 34 also has crohns colitis with the constant bleeding but no pain, and I am not sure about the diarrhea.

After our daughter was slowly weaned off the Prednisone the symptoms all came back.

It certainly helped to take her off of all lactose. She had her 6th remicade treatment, and for her, a cortifoam was the final medication that stopped the bleeding and pain.

Wish you the best, and if i can answer any questions, let me know.
Thank you for your reply. That is interesting that your daughter and nephew both have similar symptoms but in a different location. GI said my colon looked perfect, go figure. :) who knows. I am the type of person who wants to know every last detail so it has been tough for me to not know exactly what is going on. Part of me wants every single test just to know :)
 
Did you get copies of all of your lab work? It helps to start reading it as a guide line. .

From watching my daughter, the symptoms got worse before they got better.
Since you are bleeding so much, do they have you taking a mulitvitamin withiron daily?(Our Gi recommended Centrum w/iron) Anemia happens quickly and seems to take a lot longer to go away. Her GI wanted her to eat lean red meat for awhile when her count was so low. she also had an iron infusion the second time she became anemic.

Do you feel fatigued, pale or dark circles under the eyes? These are signs I notice with my daughter and know she is anemic.

Hopefully the Prednisone, will get you back on track, if it comes back, what plan does your GI for you? What about Asacol? that is usually one of the mild anti-inflammatories many people are prescribed.

(My nephew and daughters Crohns are both in colon. He just has not had pain, and she has had a lot of pain. They both have bled continuously and are always anemic. Unfortunately he has never had his under control completely. he also gets a rash all over his body which happens sometimes with Crohns colitis.

Let us know how you feel after the Prednisone is tapering.
We have not tried the all liquid approach, but many have been successful.
A current member: Gianni, is starting a community juicing that you may be interested in reading.
 
My c is in the colon, I wasn't getting d when I was eatin solid foods but consistently got blood, iv been on nothing but fortisips now for 7 days and still bleeding when I go
 
Did you get copies of all of your lab work? It helps to start reading it as a guide line. .

From watching my daughter, the symptoms got worse before they got better.
Since you are bleeding so much, do they have you taking a mulitvitamin withiron daily?(Our Gi recommended Centrum w/iron) Anemia happens quickly and seems to take a lot longer to go away. Her GI wanted her to eat lean red meat for awhile when her count was so low. she also had an iron infusion the second time she became anemic.

Do you feel fatigued, pale or dark circles under the eyes? These are signs I notice with my daughter and know she is anemic.

Hopefully the Prednisone, will get you back on track, if it comes back, what plan does your GI for you? What about Asacol? that is usually one of the mild anti-inflammatories many people are prescribed.

(My nephew and daughters Crohns are both in colon. He just has not had pain, and she has had a lot of pain. They both have bled continuously and are always anemic. Unfortunately he has never had his under control completely. he also gets a rash all over his body which happens sometimes with Crohns colitis.

Let us know how you feel after the Prednisone is tapering.
We have not tried the all liquid approach, but many have been successful.
A current member: Gianni, is starting a community juicing that you may be interested in reading.
I haven't, as of yet, had any lab work done aside from the very first time I went to the ER. There they checked my white cell and red cell counts and both were normal. I do not think I am anemic, I never have been before and through three pregnancies. The only testing I have had done is a colonoscopy.

I have been on pred for I think 20ish days and haven't had any bleeding after the second or third day. The pain I do have as been off and on. So I think it is working. Right now I am supposed to be down to 20mg after taking 40mg for two weeks. But after four days of the 20mg, I felt so terrible, I gave in and have been taking an extra 10mg each day. Which has helped immensely!

I also am taking 1000mg of Pentasa four times a day for the past two weeks or so. I think I am tolerating that ok but it's hard to tell with the pred side effects. The problem I have is its hard for me to tell if anything is working because my symptoms are mild. I guess bleeding might be my main thing to watch for. That just makes me a bit nervous because it seems like for there to be bleeding, damage is being done. Ideally wouldn't it be better to stop the inflammation before the bleeding starts?

Thank you for the tip about juicing! I have been juicing off and on for a while and just bought a bunch of produce so I can start up again.
 
Prednisone: you usually take .5 less each week. It is very important to taper slowly.

Yes, you want to stop the inflammation. Some people bleed (in my daughters case) even if she is in a mild flare. That is not the case for most people. I wish I could tell you more about what to watch for. Each person is so different, and you learn what to look for. We are still learning. Some say temperature, nausea, rash, pain, losing weight.. or so many other signs point to a start/signs of a flare.

I think making sure your getting all the nutrients is what you can watch for. I know the Ileum is responsible for absorbing Vit B12. probably should get your levels checked.

I wish there was one right way or one cure for all, but there isnt yet.
My belief is to keep it stopped so it doesnt do any damage to your intestines/colon. It sounds like you are doing just that.
 
As a precaution, I would take Vit D3 (5000iu), Vit Ks, Calcium and Magnesium (malate) to prevent any sort of osteoporosis due to prednisone. Not sure how long it really takes to effect someone negatively, but start supplementing.
 
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