Suspected Jejunal Crohn's...Experienced Advice Needed

[Mballerina]

Hello,

I am looking for a bit experienced advice from anyone that may have experienced jejunal inflammation. I am being sent for a pill cam procedure in a couple weeks and I am getting worse at a crazy pace. I have gone from always nauseous to extremely hungry all the time, though I can't eat much. I am always in pain, and my stomach has been perma bloated for weeks.

I have been suffering with progressive symptoms for many years. I went from having severe constipation to extreme diarrhea. In the last year, I have had to stop eating any vegetables, and in the last months many fruits or grains. In the last month I have had to stop eating anything hard to digest like shrimp. The problem now is that I am literally pooping out all my proteins; chicken, beef jerky, fish, smoked salmon, raw tuna, very expensive crab and lobster...
No matter how small the pieces, it is coming out. I can't even eat dill or green onion without passing every piece. I stopped eating fruit because it would be 20 bathroom trips of getting rid of all the little pieces. Most of the time I am just pooping green liquid, that eventually turns to dark black/burgundy liquid.

I have told the doctor that I have this feeling like everytime I eat the food just rushes through me and then causes a bottleneck somewhere around my belly button. He suspects that it might be Crohn's in the jejunum and that is why it took so long to find. I have had some ulcers on my stomach and esophagus in the meantime, and polyps in my colon (I am 34). The doctor feels the pillcam will probably get stuck and he tells me to be prepared for that.

I am in such bad shape and I can't find any information to help me. I have some questions:
1. Does this sound like jejunal inflammation?
2. Why the hell am I so hungry all the time (but can eat so little and then feel so bad)? I feel like I just want to eat, but not. It's driving me nuts.
3. What symptoms have people with jejunal crohn's had?
4. How was it diagnosed, did it take long, and what were they classic crohn's symptoms that you had?
5. What medication are you on and has it made a huge difference?:dusty:

 

[Jabee]

Hi Mballerina:

I have small bowel crohn’s, primarily in my jejunum, although it’s also been in my duodenum and ileum. My symptoms are mostly nausea, abdominal pain, severe constipation, and abdominal distension. Because it’s mostly in my jejunum my scopes are often clear (except for when it first presented in my duodenum). It did take a long time to get diagnosed. First my GI thought the inflammation in my duodenum was acid related, then when I was first hospitalized with jejunal and ileal inflammation (I couldn’t eat or drink) years later they thought maybe I was taking too many NSAIDS because of migraines. My GI put me on Entocort because he was beginning to think crohn’s. The second time I was hospitalized with severe jejunal inflammation my GI switched me to Mercaptopurine but that caused acute pancreatitis so he switched me back to Entocort. Each time I was hospitalized they gave me prednisone which worked wonders but needs to be used only in the short-term. My new GI who is more aggressive in treating crohn’s wants me off Entocort but wants to get the results of my abdominal MRE which I just had before we talk about what I should be on.

I’m assuming you’ve lost weight, which is probably why you’re so hungry (you’re not on prednisone, right?) all the time. If your jejunum is severely inflamed it can’t digest anything and things are going right through you. The black poop sounds like small bowel bleeding which would be consistent with jejunal crohn’s.

Is there are reason your GI doesn’t want you to have either a CTE (CT with contrast) or an MRE (MRI with contrast)? If he’s concerned the pill cam will get stuck either one of those is a better option. There is also a dummy pill you can swallow that dissolves within 24 hours if it gets stuck. Some countries use them more than others.

For right now I would try to eat a low residue diet or possibly soft solids (eggs, cream of wheat if you can tolerate gluten, yogurt, pasta, bread, ground beef, etc.) while you are trying to figure things out.

I can’t say I’ve really felt normal since my first hospitalization in 2013 and even worse after my second in 2016. I’m nauseous all the time and have a lot of abdominal pain which sometimes incapacitates me. But I have hopes that one of these days I’ll find the right treatment and will feel better than I do now.

I’m tagging Sophabulous because she has small bowel crohn’s too.

Please let us know how things are going.

 

[Mballerina]

Thank you so much for that!

You have no idea how much your detailed answer means to me. You sound so much like me. Constipation is a constant struggle for me as well. I have also had many clean scopes and many scopes with non-specific inflammation in my stomach, esophagus and duodenum that come and go. I have had pancreatic inflammation and liver inflammation that was mysterious. So much of what you said is such a comfort because I feel I am living in this mysterious bubble where I know something is wrong, I know I can't eat and there is no name for it. I am tired of people thinking I have anorexia or am obsessed with my diet. I am so tired of being scared to eat. I have constant nausea, my throat and esophagus often feel raw, and I have horrible pain around my belly button often. My belly sounds like a water bottle most of the time, and I crave huge amounts of water.

I have found that I can only go with laxatives, or I get super constipated. However, with only mild laxatives, once I go, I keep going and going. Therefore, my doctor suspects a stricture. He said that I am far too sick and in too much pain to call this a functional disorder, and if the pillcam shows nothing we are going to go in and do exploratory surgery anyway.

Have you tried the enteral nutrition before, or cannabis? I broke my leg recently and the huge amounts of tramadol were amazing, but constipating. I woke up from surgery with the local anasthetic up to my chest and looked at my husband and said "your stomach feels like this everyday? this is amazing! No wonder everyone is so happy and excited to wear clothes and do stuff!". Since my diet has degraded and my pain has become so much worse, I have relied on wine to get me through it which is probably not great, but makes me 'feel' better. I started not sleeping through the night due to bloating and just go to the bathroom 5-6 times a night. I also find that sometimes when it is bad I lose my sense of taste. Currently it is very bad, as I type this I am sitting through waves of nausea with diarrhea but feeling constipated, having severe bloating, I just threw up as well, and that spot around my belly button is aching. So you are mentally getting me through this with your message!

How has your fecal caprotectin been or your ANA results?
Also, what foods do you find are extremely difficult for you?

I find anything with fibre - corn and lettuce especially is very bad. Also, I have a problem with oils as they just come right back up in my throat. Shrimp, and foods similar in texture have started to get stuck. I basically find that sashimi or a cheese plate is my best bet.

Many many many thanks to you!

 

[Jabee]

Oh yes!

I too cannot poop without laxatives (I take Linzess 290 mcg, the highest dose) everyday and use Miralax daily. Without them I would not be able to poop. But then when I poop, which is always soft thanks to the laxatives, it is almost always followed by diarrhea. Bad diarrhea (think 7 on the Bristol stool chart), accompanied by intense pain. I have had a partial obstruction (2013) and on one of my CTs it showed significant narrowing of the terminal ileum but that did not show up on the next CTs. I’m usually scoped after being on prednisone, which my new GI and I are sure contributes to the lack of inflammation seen (even on the pill cam after my 2016 hospitalization). I have zero interest in food and have lost 25 pounds in the last six months—although some of that weight was put on during my last round of prednisone which took me six months to taper off). Eating often causes pain in my belly button area and slightly lower, like a grinding sensation (I had back labor with my children and it feels like that but in my intestines). I tend to eat more carbs than anything else because they cause me the least trouble. Vegetables go right through me as well. Salads are awful.

I’ve never had my FCP done but my ANA titer was positive, just at 1:80 though. Just high enough to be considered positive. My other main problem (aside from celiac disease) is chronic migraines. I have a headache every single day. I get Botox every three months but want to try a new medication that was just approved to see if it helps.

We do sound awfully similar, don’t we?

Augusta

 

[Mballerina]

Dear Augusta,

It is indeed remarkable how similar we are and yet when I compare my story with anyone else it is not the case! I also have the same problem with the laxatives and it must be something understood, since my GI has no problem prescribing them to me. I have to use bisacodyl and senna as I have tried all the others and they don't do anything, but swell up my stomach.
I also have never had a high ANA and occasionally only have a slightly higher c-reactive protein etc.

I think I have a partial blockage now. I have been bloated for the last month steadily and this weekend I broke down and had some chewy seafood, and then my stomach just turned into a rock. I had constant diarrhea yesterday, but also threw up twice, which is very unusual for me. Can you tell me what symptoms you had during your partial blockage?

I am a bit afraid to eat, as I even threw up cottage cheese yesterday. However, I am also afraid to go to the hospital as that usually means hours of my day and disappointing returns on that investment. I hate hospitals.

So thankful for your help,
Magdalena

 

[Jabee]

Hi Magdalena:

Well this morning (here) I have more information to share with you as I received the results from my MRE. It seems I have an area of the terminal ileum which shows decreased motility and is surrounded by mesenteric fat, classic signs of crohn’s (in this case ileitis). This is consistent with a CTE I had three years ago which showed significant narrowing and a minor obstruction in the terminal ileum (the hospital sent me home on a “preliminary reading”of the CTE so I left, in pain and unable to eat and didn’t get the actual result until several days later).

This makes a lot of sense given my constipation followed by diarrhea, as things are backing up in my terminal ileum, finally break through, followed by the awful pain. Then the cycle repeats. If I don’t eat things feel a bit better.

But as to your question about blockages, what you are experiencing sounds exactly like mine. The first one I stopped eating and drinking (not because I didn’t want to but because I couldn’t). Off I went to the hospital and that’s when they found severe inflammation in my jejunum (with the classic skip pattern of crohn’s) via CT (I couldn’t drink the oral contrast). My abdomen was completely bloated and I told the doctors that I wanted a zipper so I could unzip my abdomen and let all my intestines hang out. I spent a week in the hospital on only IVs and 60mg of solumedrol (IV prednisone basically), lots of pain medication, and felt much better when I left.

The second obstruction was a bit different. I was going downhill, with no appetite and feeling increasingly sick when I woke up one morning, threw up, and promptly couldn’t get off the floor. That time I went in by ambulance with the same CT results but in the ileum. I left the hospital in so much pain (even though I was on pain medication in the hospital too) that it took three days of lots of pain medication until I could actually function. Six months later I went in again with severe pain and that’s when they misread the CTE and sent me home.

I would call your GI and let him know what’s happening. I hate going to the hospital as an emergency patient partially because the regular ER doctors don’t know crohn’s so they don’t really know what to look for. My blood work is usually normal (except for consistent anemia which was really severe when my duodenum was involved) unless I am really sick and then my CRP is elevated. Try a clear liquid diet (broth, black coffee or tea, bone broth, gelatin). Sounds really fun, I know. But that’s been very helpful in the past when things have been feeling like a blockage. I hope you feel better. But please call your GI (easier said than done).

Augusta

You can always PM me if you’d like.

 

[Jasonaldean]

Thanks for your post and answers.