Budesonide suppository or enema?

[UkuleleLady]

Hi guys,

hate to post this TMI stuff, but I really have no where else to turn.

I don't think the entocort is reaching my sigmoid/descending colon, and that's where I believe my problems are the worst. I have constant pain in my lower left side, and I've been on the entocort for about 40 days. I feel like it isn't reaching that area?

I'm debating grinding up the contents of a capsule or two and making my own suppository out of the powder and coconut oil, then freezing it.

I read somewhere on the internet that a person ground up three and mixed it with water to use as an enema.

Has anyone else done this? What do you all think? Should I be more patient with the oral dosage? I've got almost another two months to go.

Thanks for any thoughts.
Nancy

[tex]

Hi Nancy,

Not to worry — discussions of this type are a dime a dozen on this board.

Rather than to try to make a homemade suppository (which may never affect the sigmoid colon), I would ask my doctor about Rowasa, which is a rectal suspension enema that provides 4 grams of mesalamine in a 60 mL dispenser. These disposable dispensers make an unpleasant job much easier when administering treatments in the distal colon.

That said, I seriously doubt that you can feel sites of active MC. What you are feeling in your sigmoid colon is very common for most diarrhea-based issues, and typically has more to do with stretching of that section during stool forming activities and other issues (such as diverticulitis), than anything else. There are virtually no pain sensors in the interior of the colon. They are concentrated in the serosa (the outer layer) of the colon. That's why you can't normally feel inflammation. With Crohn's disease, by contrast, the disease can penetrate so deeply that the serosa is also affected, and that's why Crohn's can sometimes be very painful.

Usually (that is, in most cases), MC is most prominent in the terminal ileum and the ascending colon, rather than in the descending colon. And this is precisely where Entocort is primarily targeted. Surely some of it reaches the descending colon, though. UC, on the other hand, is most prominent in the rectum and sigmoid colon.

If you really want to treat the sigmoid colon, there is a brand new medication, called Uceris, that was developed for treating UC, and I'm pretty sure that it would be more likely to concentrate the treatment in the distal colon. IMO though, that wouldn't be ideal for treating typical MC cases.

Are you having any partially-formed stools? After long periods of D, when the colon attempts to resume normal stool-forming activities, such sensations can occur. And of course, Entocort is notorious for causing such sensations when C begins to develop, signaling that it's time to reduce the dosage. When that happens, the primary center of pain would typically be the sigmoid colon and downstream.

Or, could you be experiencing active diverticulitis? Did your pathology report (from the analysis of the biopsy samples collected during the colonoscopy exam) mention any "tics" (if any were present, they would have been noted by the pathologist in the report)?

Tex

[UkuleleLady]

Hi Tex,

I haven't heard any mention of diverticula from my doc, who performed a digital exam as well as a colonoscopy not too long ago. Biopsy doesnt give an inkling on that eithher.

But, it does feel weird in that area and at times painful. My stools aren't fully formed for the most part. When I went camping a few weeks ago, they were, and I even had some c. But since then, they've loosened up.

Ugh, I'm so not interested in calling the doc again, but, I feel like there could be something else wrong. This is akin to the pain I had during constant D; but now I'm not having that, thank God, due to the entocort and hopefully, diet.

Well, you have given me some good food for thought. I really appreciate your thoughtful and objective response. I wish we could all throw you a big party to show our appreciation.

Nancy

[christinakay]

Nancy,

When I was first diagnosed with MC, I had a dull pain on my lower left side. The ache went away after a few months and hasn't come back.


Christina

[JLH]

Lower left pain is partially why I had my first colonoscopy. It was diverticulosis. The other, of course, was the BIG D.

[UkuleleLady]

thank you Christina and Joan for your replies! Hopefully in a few months it will subside. I'm not expecting diverticula, but hey anything is possible at this point!

[hoosier1]

I don't think the entocort is reaching my sigmoid/descending colon, and that's where I believe my problems are the worst. I have constant pain in my lower left side, and I've been on the entocort for about 40 days. I feel like it isn't reaching that area?

Nancy, I also have problems in my descending colony with a pain in my lower left side and lower. I am currently being re-evaluated by my GI to understand why that is and if something else is going on. But as Tex suggested, I used 60mg Rowasa Enemas and find some relief from them. I have a friend who is also a physician and he prescribes them for me based on my description of symptoms to him. I just started a course a few days ago and plan to stay on them for a while, taking them nightly, to see how I do. They are easy to take, but you may feel an urge to expel them as soon as you inject them. You are supposed to lie on your left side, let that feeling pass, and try to hold the medicine through the night.

It is very staining so be careful not to drip any on the carpet. But I don't see how it could hurt trying them. After my last CT Prep, the mag citrate made me raw all the way down there and the enemas were a great relief. I always have a stash of them on hand.

Bentyl, an antispasmodic, may help you with that discomfort as well.

Rich

[UkuleleLady]

Thanks, Rich, for replying to my post.

I have been doing better in recent months, but it might not be a bad thing to ask my doctor about. I occasionally still have episodes of pain that bother me for a few days and it would be nice to have some kind of rescue medication.

I hope the treatments are effective for you and you gain some improvement.

Nancy

[nsaidcolitis]

Hi. As tex said MC attacks primarily the terminal ileum and ascending colon and this is exactly where I felt the pain. A few months ago it was so bad like a knife and I couldn't sit because the pressure would give me more pain, couldnt sleep on my right side.

However after finding this forum. I notice my allergens and the pain is now a discomfort that sometimes goes away completely for hours and hours.

It comes right back after I introduce an allergen. For example, citrucel (citric acid) or fruits instantly give me pain in the same side.

Also I notice salmon with salt gives me pain and I know eat bumble bee tuna without salt and just water, more expensive but the pain is better.

I suggest you also look for an allergen that may be causing this so the med works better. Some of them are not obvious, example bananas dont give me much trouble....but plantains ! the pain gets bad.

By the way I am in no meds. I was in prednisone for a while and could eat even milk and cereal whatever I wanted without pain. However when I introduce some fruits with A LOT OF milk, the prednisone DID NOTHING and the pain came back stronger. I am now just controlling this with diet thanks to Tex.

Oh I forgot the pain is my main symptom along with C and bloating. Colonoscopy did not find diverticulitis