New to Crohns, and the treatment is as scary as the disease!

[Dialn911]

Hi guys, I am new to this forum, as wells as Crohns. I am only 30, and I was a cop until my health went down hill, and when it went, it went fast! I was diagnosed about 2 months ago, and I am already having a struggle. I have been in and out of the hospital, and could really use some advice or encouragement.


I tried Rewassa, but it appears I have an intolerance to Mesalamine. I took half a bottle by enema, and about 3 hours later, I had explosive watery diarrhea. I felt sick to my stomach, and my bowls were cramping. I then began to run a low grade fever. I took nothing for the fever, and it went away whin a few hours. I went to the hospital thinking I had an infection, but they found no issues.

My doc wanted to see if I handled Apriso ok, but when I read the box about Mesalmine intolerance, it described exactly what I had experienced. I called the manufacture of Apriso, and a drug expert told me over the phone that if I ran a fever with it, I should stay away from Mesalamine drugs like Apriso, Asacol, Rewassa, etc. They said that a fever is not a good symptom.

My doc wants to me try it anyway again, but I am nervous. Years ago I suffered a very traumatic bad reaction to a medication I took, where my chest got tight and a very bad migraine. Since then I have been shell shocked about taking new medications, and I get very bad anxiety about it, to a point where won't take anything.

This last experience with Rewassa didn't help either. They suggested prednisone, but I have have had adrenal issues in the past, and prednisone can wreak havoc on me, so my doc decided to hold off on that.

He says he wants to shy away from hard stuff like Remicade, because of the serious side effects it can bring.

I now may have a fistula around the anus, I need to get it checked out again but I have a hard mass that appears to leak puss. No fever, but not good.

I was given FLagyle for it, but have never taken it. All I know is that it can be a very nasty drug, and even cause convulsions.

I have a medical marijuana marijuana card, and recently got some to see if it would help with the inflammation, but I haven't tried it yet.

I know at this point your probably like dude...take something! I know...Im just freaked out, and everything I take seems to go badly. Has anyone had success with FLagyle? how about marijuana?

I need to do something, but Im scared of going down a roller coaster ride from hell if I turn into a drug guinea pig.

I have been having sever pain that comes on in what I call constipated diarrhea. I can't go for a week. When I do, very little comes out. Then, I will have a day where I get forceful spasms, and the stool comes out in ribbons loose. The pain is great, and keeps in the bathroom for hours. This causes a fissure I have had to re tear open every time.

I am terrified of a stricture, but I assume 5 months is not long enough to develop one?


I appreciate all the help and info any of you may have for me. Its weird, I don;t have a problem going to an armed robbery, or dealing with a gun in my face, but when it comes to this disease and taking medications and fighting it, I feel like a big wimp. lol......go figure.

 

[kiny]

I've taken Flagyl for a secondary infection, flagyl is nothing to get worked up about.

But it's rarely used to treat crohn's disease, unless it's given together with cipro.

Cipro can be somewhat effective for some since it's effective against AIEC, and especially people with ileal disease seems to benefit from it. But like all antibiotics, if the bacteria isn't killed you run into resistance and it will become ineffective.

What flagyl is used for, is your fistula. They want to prevent lumen content from further infecting you and making the fistula worse, so I would strongly suggest you take it if they tell you to (it has a nasty taste if you leave it in your mouth though, so swallow it with a good amount of water). Flagyl is also effective against common C diff strains, although not all.

 

[Tesscorm]

My son had a mild allergic reaction to Cipro so, at diagnosis, he was given Flagyl by IV. He didn't have any side effects from it.

As a temporary option, you can look into exclusive enteral nutrition. Again, this was the treatment given to my son. To try to induce remission, you ingest (either by NG tube or orally by drinking shakes) the enteral nutrition formula for six weeks - NO other food! This took my son into clinical remission (no symptoms) and was then his maintenance treatment for 18 months (1/2 dose of formula plus regular diet). Unfortunately, it was not enough to eliminate all inflammation and he has recently moved onto remicade. However, in children (my son was 17 though), it has comparable success rates as steroids in inducing remission. It provides all necessary nutrition, has anti-inflammatory properties and allows for bowel rest and healing and NO side effects! There is a subforum on EEN in the Treatment section.

However, it is rarely used as a permanent treatment. I also do not believe it will help treat your fistula.

There are a number of members who have tried low dose naltrexone (LDN) - it has worked for some! It was my first choice for my son but, unfortunately, it just didn't work out that way! :ymad: But, it also has very few side effects. Again, there is a subforum in the treatment section.

Have you ever gone for drug allergy testing? It might be worth checking out.

These are never easy choices! But, leaving your crohns untreated can also bring risks.

Good luck!!

 

[Dialn911]

NO, I didn't know they did drug allergy testing. That's interesting.

I have a blendtec, I thought maybe I could get by with some shakes to give my digestive track a rest.

I wish I could find someone who makes pure cannibis oil in my area, I have heard great results with this. Apparently the cannibinoids in the plant reduce gut inflammation.

I will try the flagyle and perhaps try the mesalamine again.....I don't want to create a larger problem by doing nothing.

anyone have any sucess with juicing/blending?

 

[wild_one353]

you should definitly use the stuff more then once, how do you establish the cause of the symptoms as the medication? if it happens the second time around, then it wasnt just a coincidence.

retest and make sure it wasnt a coincidence.

 

[KWalker]

like kiny said, flagyl definitely has more bark than bite. I believe it's actually listed as quite a dangerous drug but I've been on it so many times now for different periods of time and have had no serious side effects from it, but it has helped me quite a bit (abscesses). I get the common side effects like nausea and loss of appetite but that's about it