Hello @kimh , How are you doing? I was just wondering if you had anything you could share with the group regarding your appointment with the specialist in November.
I hope you are doing well.
@vdouglas
Von

Hi Von (and everyone else on the forum!)
I hope you all had a wonderful Thanksgiving.
I did want to catch you all up on what path I am on. I went to my gastroenterologist and he said that he wanted to do further research on MP, so in the meantime, he has put me back on the Prednisone beginning at 40 mg. for three days and decreasing by 5 mg. every three days. Tomorrow I begin on 25 mg. He is hoping to put me on azathioprine (immune suppressant medication) if it will work for my body alongside a low dose of Prednisone. He sent me for a slew of blood work and I am still waiting on those results. Unfortunately, I have to wait until the 19th for my next appointment and though my nausea has subsided, but I am still in pain. Having my pain medication prescription renewed has been troublesome because of pressure being put on the medical system to cut down opiate use. For the past two weeks, I have basically been bedridden, eating small snacks (rather than a plate of food for a meal....it doesn't matter because I don't have much of an appetite despite being on prednisone) and taking warm baths to try to help with pain management. I find nights to be bad as the pain awakens me while I try to find a comfortable position to try to sleep. Has anyone else noticed that laying on one's right side seems to cause discomfort? Actually, at this point I am feeling frustrated and down as I see life passing me by while I lay on the couch. Sorry for the novel.....again...

Hello @kimh , Thank you for the novel! I appreciate the information and I'm sure others are learning from it as well. It's good to hear from you. Sorry to hear you are still dealing with the ill effects of the inflammation or sclerosis but the nausea has subsided which is a big plus. Maybe without the nausea the appetite will come back so that you might gradually increase your food intake. Warm baths are a really good Idea I had not tried that during my episode. My left side was the direction that helped me the most as you mentioned. I continually tried to find that sweet spot. I had to sit and sleep upright in the corner of the couch twisted to my left side, a little difficult to describe. My right flank and lower right belly area is where I had the pain.
If all else fails "Tramadol" is still easy to get for now but it is not very effective for pain unless you can get the maximum dose prescribed.

It's easy get the feeling life is passing you by especially when in your situation but you are strong enough to get through this and remember, tomorrow is a new day, we'll pray it's the day the pain starts to subside.

Please keep us posted, we do care. Best wishes on the 19th.
@vdouglas
Von

Any thoughts to share? @lockedavid , @poppy73 , @pcfromfm , @joyful1

Thanks Von,
To be honest, this forum has been such a help for me and not only to learn about new treatments, but just knowing that you all get it and I'm not 'strange'! And yes, when you described your sleep position, I envisioned it quite clearly! My pain is in the same areas as yours were. You did mention sclerosing which I thought is sort of a stage two of the disease. Is this something I should be discussing with my doctor? Is there a test for this? For pain, I had thought of tramadol or tylenol 2 or 3, at least to take the edge off. I'm going to send a text to my GP tomorrow to see what he thinks. I honestly don't mind waiting for treatment as long as I can be a little more comfortable as far as the pain is concerned!
Kim

Hi @kimh,

If you are in a lot of pain, I recommend you try the autoimmune protocol of the Paleo diet.  Others have tried FODMAP, but the autoimmune protocol has done the trick for me.  I also had immense success with supplements for autoimmune conditions as recommended by Chris Kresser (http://my.chriskresser.com/the-supplement-guide/). I used to have the same sleeping pain.  Although my MRI still shows that I have the disease, I can say my bloating is gone and so is my pain. I don't take meds, but just go strict with my diet and my supplements. I realize not all folks have the autoimmune version, but these supplements are great for gerd and general gut health.

Hope this helps.

take care,

@kimh

Being awakened at night has been a primary concern for me with this in terms of quality of life. Many people experience positional pain with mesenteritis. Some when lying down, others while standing or sitting. In my case, when sleeping in any horizontal position, my symptoms increase, and as my symptoms increase I wake more frequently and get less quality sleep.

For me, there are two things, primarily, that have helped with this:
1) Extended release Hyoscyamine (I use the brand name Symax Duotab), which was prescribed by a GI doctor.
2) Sleeping with my torso elevated. I use a Medcline wedge for this, but there are many different supports for this purpose available. An adjustable bed is probably the best option (my parents have one and they love it), although obviously expensive. I find that the Medcline works well for me.

I've also found that lying on the opposite side of the pain helps sometimes (my pain is on the left upper quad). Other times, stretching out my body on the side where the pain is helps. Using a heating pad on the abdomen at bedtime also seems to help me.

Keep in mind that this thing is a journey. Small steps forward in learning to live with it are significant.

I hope some of the advice here helps! Best wishes!

PS: In terms of being down, I've definitely been there. One thing that helped me enormously when I was feeling like my life was over was Toni Bernhard's book "How to Be Sick." She comes from a Buddhist perspective, but I feel like it would be helpful for anyone regardless of their individual beliefs.

Keeping my body elevated may help and I will definitely ask my doctor about the hyoscyamine as well. I'm surprised that my body hasn't taken to the prednisone as efficiently as other times and that is a little concerning for me. As for the lack of sleep, I am lucky that I am not yet back to work so I am not on 'the go' as I would typically be, but I have to wonder if being in constant discomfort is tiring out my body, which may be another contributor to lack of pain relief! Also, thank you for the heads up regarding the read. I will look into it for sure....