Prednisone helped pain, but not the rumbles / gurgles / noises

[CallieS]

Hey everyone! I've almost been diagnosed with Crohn's. LOL. My two biggest symptoms are/were severe upper abdominal pain and extremely loud, violent rumbles/gurgles/noise.

Long story short, two different doctors think I have Crohn's, but it hasn't been able to be proven with biopsies. Two CT scans have shown 12 inches of inflammation. After a recent colonoscopy, the doctor said I have a very narrow stricture in my small intestine close to the terminal ileum. He couldn't get the scope past the stricture to see the rest of the inflammation. He said the stricture was probably the cause of both the pain and rumbling.

Immediately after the colonoscopy I was put on Prednisone starting at 40mg and tapering 5mg per week. I'm now almost done with the 20mg week. My pain hasn't returned after the colonoscopy. :dance:

However, my rumbling is still very active.

What could this mean? Did the prednisone not completely work? Is the rumbling caused by something else? (Please, no more problems). I'm going back to the doctor for a follow up on Monday, but I'm predicting that he's not going to take it very seriously. I'm just wondering why the prednisone worked so well for the pain, but not the rumbling if the doc's theory is that they are both caused by the stricture.

Prior to the Prednisone, I had been on dicyclomine (Bentyl) for the pain and rumbling which slightly helped, but it made my brain too foggy. I don't want to have to take that again, but I will if I need to.

I have started taking probiotics (Align and eating yogurt). It's not helping. I noticed that the rumbling usually starts immediately after I've eaten anything. Almost like my digestive system has kicked into high gear waiting to process new food.

Any other suggestions for getting rid of the rumbling? Besides surgery. LOL. Just an FYI - my doc said that if the prednisone worked, then he'd move me to Humira or Remicade as maintenance. Would those help?

 

[ronroush7]

I am guessing that the prednisone hasnt completely helped. One of the biologics that the doctor talked about could help.

 

[Jabee]

Do you have any issues with gas? I have small bowel crohn’s so pain is my main symptom as well. You could try a low residue diet or a low FODMAP diet. I suspect you’re right about your GI not worrying too much about the rumbling since your pain is better. Hope you can figure it out.

 

[DougUte]

CallieS, your case seems similar to me. My GI could not get my first colonoscopy past the blocked Terminal ileum. It sounds to me that you have Crohn's. I am not a doctor, so take that statement with a grain of salt. The biologic meds you mentioned, Humira and Remicade, are anti- TNFalpha and reducing that level will lead to lowered inflammation in your gut. I hope things start going better for you.

 

[CallieS]

Do you have any issues with gas? I have small bowel crohn’s so pain is my main symptom as well. You could try a low residue diet or a low FODMAP diet. I suspect you’re right about your GI not worrying too much about the rumbling since your pain is better. Hope you can figure it out.

Jabee - I don't think I have issues with gas. Let's just say that if I do, it doesn't come out excessively, either up or down. ;-) And GasX doesn't help, believe me I've tried. Over the past 2.5 years that I've been dealing with this, I haven't tried FODMAP, per se, but I've done gluten free, dairy free, sugar free, specific food free (like no eggs, no legumes, etc). None of that helped. This is so frustrating, as you guys know.

Ron and Doug - I cannot wait to get started on Humira or Remicade! Finally I'm optimistic that I can be treated. At least the pain is gone, thank goodness. It was so debilitating. The rumbling is annoying and embarrassing. It's so loud!!

I know prednisone is super strong and effective at reducing inflammation. Are the biologics even better? I suppose they are more targeted to this disease than the pred.

I'll also be asking my doc all these questions and will let everyone know what he says in case it could help someone else.

 

[Jabee]

I forgot to mention that a minority of crohn’s sufferers have biopsies that are conclusive for crohn’s. Most people are diagnosed based on symptoms and imaging. The site of your inflammation and the stricture are pretty conclusive for crohn’s.

 

[Squirrel#1]

Hey everyone! I've almost been diagnosed with Crohn's. LOL. My two biggest symptoms are/were severe upper abdominal pain and extremely loud, violent rumbles/gurgles/noise.

Long story short, two different doctors think I have Crohn's, but it hasn't been able to be proven with biopsies. Two CT scans have shown 12 inches of inflammation. After a recent colonoscopy, the doctor said I have a very narrow stricture in my small intestine close to the terminal ileum. He couldn't get the scope past the stricture to see the rest of the inflammation. He said the stricture was probably the cause of both the pain and rumbling.

Immediately after the colonoscopy I was put on Prednisone starting at 40mg and tapering 5mg per week. I'm now almost done with the 20mg week. My pain hasn't returned after the colonoscopy. :dance:

However, my rumbling is still very active.

What could this mean? Did the prednisone not completely work? Is the rumbling caused by something else? (Please, no more problems). I'm going back to the doctor for a follow up on Monday, but I'm predicting that he's not going to take it very seriously. I'm just wondering why the prednisone worked so well for the pain, but not the rumbling if the doc's theory is that they are both caused by the stricture.

Prior to the Prednisone, I had been on dicyclomine (Bentyl) for the pain and rumbling which slightly helped, but it made my brain too foggy. I don't want to have to take that again, but I will if I need to.

I have started taking probiotics (Align and eating yogurt). It's not helping. I noticed that the rumbling usually starts immediately after I've eaten anything. Almost like my digestive system has kicked into high gear waiting to process new food.

Any other suggestions for getting rid of the rumbling? Besides surgery. LOL. Just an FYI - my doc said that if the prednisone worked, then he'd move me to Humira or Remicade as maintenance. Would those help?

Phazyme 180mg. I take 2 right before eating. It greatly reduces the noise. If you drink carbonated beverages reduce them. The fizzy is very irritating. Hope this helps.

 

[The Real MC]

Ask your doctor about bland diet. It is designed to drastically reduce intestinal gas. The diet isn't too restrictive, nowhere near as bad as liquid diet.

 

[CallieS]

Squirrel - thanks for the tip, I'll try the Phazyme. Yep, I've learned the hard way about the carbonated beverages.

MC - I'll check into the bland diet. I haven't tried that specifically. My doc hasn't ever gotten on the food bandwagon. He's all about medicine. I asked if he knew any nutritionists in the area and he said no... after looking confused. Then once I asked him about taking digestive enzyme supplements and he asked me what those were. Goodness. Despite that, I do trust his medical skills, LOL.

 

[The Real MC]

If your doctor can't think of a single nutritionist, then you need another doctor.

While diets don't work for everyone, medicine doesn't work for everyone either.

I was lucky that I could control my CD by isolating and eliminating trigger foods, and by mixing greek yogurt (good probiotics for the piping) with a tablespoon of honey (natural anti-inflammatory) I could tame the rumbles and noises.

When I told my primary GI, he became a convert and was convinced that I did not need medicine other than Pentasa.

I had other GIs who insisted on all these medicines and examinations. One of them was so aggressive with the examinations that I found myself with a $1700 bill for them. The examinations by then came back spotless so I cancelled the remaining ones, cancelled all visits with the flake GI, and complained to my primary GI about her. Besides the excessive examinations - for an ailment that was NOT a flare up - I caught her making mistakes in my medical records and had her make corrections (due to cultural language differences she mistook PICC tube for feeding tube - big difference!). My primary GI gave me a copy of my record to review for further corrections. A few months later I got a letter from the office stating that the flake GI was no longer there.

 

[Guerrero]

Hi CallieS,

usually doctors don't worry too much about rumbling. It is not considered to be something serious. I'd not worry too much if I was you.
However yes it could be from the actual stricture, but this stricture could be healed.
There could be two forms of strictures, one is from inflammation and you need a long term medication to get rid of it. The other form is from scaring due to many cycles of inflammation that leads to thickening and in this case medication can't do much.
In your case it's likely to be from inflammation (CT scan, mri or biopsy could confirm it) as your disease is very recent, so now you need to find a long term medication after prednisone to have it under control and heal your small bowel.

So it's very important you find a good ibd team that could give you the best medication (usually immunosupresants or biologic) and get your inflammatory markers regularly checked (like C-Reactive Protein or Calprotectin) to see if there is inflammation ongoing and address the treatment toward the best medication for you and resolve all your issues including hopefully the unpleasant rumbling

 

[CallieS]

As promised, here's an update from my appointment yesterday. I didn't learn anything that I didn't already know. My doctor said that it's possible the prednisone only helped partially and that's why the rumbling didn't go away. He said the Humira-type drugs have the potential to continue to improve my situation. He admitted that the prednisone is the strongest anti-inflammatory out there and should have fixed whatever is able to be fixed (ie straight inflammation vs fibrosis), but it's short-term. Since the Humira-types are long-term, they may have more time to reduce inflammation. Or I could have fribrosis in which case none of the medicine will work. There really isn't any way to know at this point unless I do more CT scans or colonoscopies. No thanks.

I'm still tapering the prednisone. I'm about to start 10mg for a week, then go down to 5mg. After that I was supposed to stop, but my doctor will have me continue at 5mg until I start either Humira or Cimzia.

He recommends Cimzia if my insurance will approve it. If they won't, then we'll try Humira.

I am going to change my diet to see if that helps, but I'm also afraid of my inflammation coming back quickly. I had been in constant pain for so long that I'm so scared of getting to that point again. I'm willing to take the risk with Cimzia or Humira. It's worth it to me. I'm also suspicious that I have numerous other auto-immune disorders, so I'm curious to see if this medicine helps with my other issues as well.

 

[Guerrero]

I think either cimzia or humira are good choices
I hope you'll be well soon

 

[my little penguin]

Good luck with humira or cimizia
Humira takes 3-5 months to become effective so you may need a bridge therapy of steriods or something else until then
Ds was on humira for over 5 years