In need of help

[BlakeTheSnake]

I've had Crohn's since 2011 and have opted to not take any medication. Just a few months ago I was put on prednisone for the first time and my doctor told me to take 60mg everyday to control the major flare. I would take the pills and a few hours later I would have massive abdominal pains. I also noticed I would get massive stomach pains after taking vitamin pills. So since then I tapered off the prednisone and started the SCD diet. I am a little over a month in the diet and I have had formed bowel movements only after the second day of the diet! Before that I would get woken up early in the morning to a very painful and enduring bowel movement. I would be on there for hours most days because it never felt like I was done. But like I said since going on the diet, that has subsided.

So I feel like the diet is working, but I still get massive abdominal pains. Just a week ago I started to flare up and it wasn't from any type of food, it just happened to wake me up in the middle of the night and the massive abdominal pains would not go away, forcing me to seek medical attention.

Now my question is, since I have normal formed bowel movements and no pain while having a bowel movement, would it be safe to say my intestines are starting to heal? I have a lot of hope that this diet could work, but my abdominal pains are to the point were it's almost impossible to do anything. Would it be beneficial to start Remicade treatment, or do you think the diet is working? I just don't want to be in pain anymore.

PS: I am an advocate of medical marijuana and I feel it has been the reason for me not having any surgeries. I medicate everyday and it's the only thing that relieves the pain instantly.

 

[alex_chris]

Personally I am an advocate of a mixed approach to long term treatment of Crohn's, that is diet, stress relief (be it through yoga, mental relaxation or as in your case marijuana), long term medication, sport ... but also effective long term medication.

Having said that, if you have actual pain, despite normal bowel movements, that seems to be quite a clear sign things are not alright, especially what you said about the massive pain that started in the middle of the night.

My advice would be starting with a biologic drug (be it remicade or humira or any other biologic drug), while continuing the other things you are doing to manage Crohn's. Biologics are just the most effective single treatment out there. While there can be side effects, the effects from the scaring of inflammation during your currently active crohn's is likely more problematic.

 

[Justanothercp]

Sounds like a partial obstruction to me. If it is due to inflammation, the diet and medication could help. If it's due to scar tissue, nothing is really going to help except surgery. That is the problem at times with not taking medication, you continue to have low-level inflammation and scarring to the point that you have an obstruction.

 

[Clash]

With diet or any med, there is a huge difference between relieving the pain and the healing of the inflammation in the intestines. For that reason, no matter what route you take I would get regular testing to ensure you are healing properly and achieving more than clinical remission. Inflammation left simmering may not cause any symptoms but can lead to irreparable damage. So regular blood work and possibly an fecal calprotectin stool test are definitely needed.

If you are still having pain, no matter your treatment regimen, you aren't in deep stable remission and notifying you GI as well as further testing are probably in order. If there is no active disease present then it is possibly scar tissue or stricturing that is causing you problems.

I would discuss the symptoms with the GI and try to determine their origin and make a decision on treatment based on that. I hope you find relief soon!

 

[alex_chris]

Sounds like a partial obstruction to me. If it is due to inflammation, the diet and medication could help. If it's due to scar tissue, nothing is really going to help except surgery. That is the problem at times with not taking medication, you continue to have low-level inflammation and scarring to the point that you have an obstruction.

I think this is a bit too far reaching. Abdominal pain can be from various things, not necessarily strictures or even actual obstructions.

However, to the OP, in addition to starting with long teem medication, I think Justanothercp has a good point that the usual diagnostics are quite important, that is a colonoscopy, an MRI (or if not that, a scinitigraphy of our small intestine) and a gastroscopy.

 

[mvond5]

Scd diet tells you that there is a die off with the diet. My opinion is stick with the diet and read Breaking the vicious Cycle if you have not already.
Please I advise that you also do the 24 hour scd yogurt. Stay away from the medicine until you really need it. Continue seeing your doctor to have your blood work and calprotectin. Test done to verify you are in the healing stage.

 

[UnXmas]

Scd diet tells you that there is a die off with the diet. My opinion is stick with the diet and read Breaking the vicious Cycle if you have not already.
Please I advise that you also do the 24 hour scd yogurt. Stay away from the medicine until you really need it. Continue seeing your doctor to have your blood work and calprotectin. Test done to verify you are in the healing stage.

A huge number of things can cause severe abdominal pain, some of them very serious. I think assuming it to be "die off" would be very foolish, whatever blood work shows. If blood work is normal, further testing would probably be a good idea, as pain this severe is not something that should be ignored.

 

[worriedboy]

As much as I like the attitude of avoiding medication if not really necessary, it sounds like you are suffering and as already said by the others such pains are implying an underling cause that Has to be checked out, sooner the better.

One thing you dont want is to reach a stage of un reversible damage. Starting medication on time may also improve the prognosis.

Dont count on the diet alone. Go to your doctor and complete the check ups. If needed start medication along with your diet if it helps.
Combo-approach with Crohns proves itself for many.

Feel weel and pop by to update how you are doing.

 

[BlakeTheSnake]

Thank you everyone for your replies. I will take everyone's advice into account. I start my treatment on Monday. Though I am excited, I don't want to push my luck. I've lost alot of weight these last few months and I'm really hoping Remicade can put me back on track. I plan on doing a combo of Remicade and the SCD diet for a while.