How to treat diffuse inflammatory pain when unable to use NSAIDs due to UC?

Thank you Sherri and Fruitgirl!

I understand your suggestions, as these have been discussed, intermittently, for a few years now. 

In my case, thus far, my Neurologist and Rheumatologist have agreed with one another in their joint opinion that the biologics run too many risks for me.  We will see if they still hold this opinion when I see each of them this Summer.  (The medical system is so jammed up here, it takes so much time to get into see anyone, even when in a flare. It is the best medical system in this State, but still jammed up and so back-logged.)

Sulfasalazine has also been discussed. Two of three of my specialists agree this is the safest approach to try next; yet, continue reticent.  The third is very much against it in my case.  We will see how this all shakes out this Summer, as I have follow-ups with specialists this Summer.  We will now need to add a GI specialist back into the mix.  I have not yet heard how long I have to wait to see my GI doc.  Still waiting to hear.  The ER doc (3 days ago) wanted me to go to GI doc within 10 days.  The GI practice says not going to happen!  Will get it sorted out!

This reticence, on all of my doctors parts, to use Sulfasalazine or the Biologics is why I look for alternative options. There are overlapping and complicating factors which do not make it cut and dried for them to treat one way or another.  They do care and they acknowledge the severity, yet they also have major concerns about these meds in my case.  Things get stuck there, which may or many not be in my best interest. I know I suffer a lot of chronic pain because of this.  My doctors feel that, for the most part, I have so many adverse drug reactions and allergies that it is often safest in my case, even if not ideal, to not use these types of meds. 

These opinions prevail when I also obtain consults in major medical centers in other States as well.  I have seen some top researchers, too. It has been over 20 years for me of accruing multiple AI conditions, pain, disability, etc. The treatment of one is often contraindicated in the treatment of another, etc.  Complex.

At the same time, I am still alive and am still looking for alternative answers!

Please understand, I work at staying optimistic, it all does get very tiring, as you know well. I am always looking for new options!

Time will tell us so many things!

Thanks again, so very much!

~Hopeful Heart~

Thank you for your response!

I  am glad you have had success with Sulfasalazine!

Yes, I have heard this theory about joint pain and bowel inflammation and I tend to agree.  Infact, I already see a difference in my overall pain with simply using Canasa suppositories. I was shocked I would see a difference so very soon in any joint pain, if at all, with this particular med.  (Someone will come along to tell me this cannot be or is not likely; but I know the difference! I have lived it plenty of years!)

Thanks so very much for taking the time to mention your own experience with this! 

I am willing to try Sulfasalazine if the docs are willing to prescribe it this Summer! (One doc sure I was allergic to it, so I had set up an appt with an allergist to drug tolerance test this med and the whole test went well, I am not allergic to it!)

Thanks again, Kazbern!

With Gratitude,

~Hopeful Heart~

Thanks for your response!

I know diet is vitally important in my case! I thank you for this reminder, too!

In years gone by, I did very well with elimination diets. I had cut all forms of sugar, all wheat, all dairy, all gluten and even fruit. Within 6 months, I was off of all of my NSAIDs, which were maxed out and off of all pain meds and had no more IBS, which I had suffered with for years. (I had also used some supplements, but pretty basic.)

So what happened?

Well, over time, I tend to get away from the diet, little by little, especially with lots of stress. Thus, have broken diet a few times over the years when things get ultra stressful.

This time, we had lost our home to major flooding.  We had to leave immediately, of course. We have had to wait over a year to get the restoration work done, etc.  We have been living in hotels and  with family and found it impossible to eat the way were were used to.  The kitchens (even with relatives) were not "ours," nor was there room in the refrigerators for the types of foods we usually have in our refrigerators.  We had offered to buy another refrigerator and put it in the garage or something, so we could eat differently, but that idea was not accepted, either. Some peole just do not understand the importance of diet for some of us ... and think the dietary restrictions are just neurotic or something.  They don't take it seriously, even when I had tried to educate them.  We are thankful for the assistance of others during this time, of course.  Not being able to eat the way I need to eat has really done a number on me.  I have only been increasingly ill during this time.

I have read about the Paleo diet and have the book in storage.

I have also read on the SCD diet.  I need to compare the two to see which I feel is best for me. I love veggies and crave them! I hope to have more of them back in my diet as soon as I can.

Usually, adhering to a diet for a prolonged period is not a problem for me, as long as I have use of a kitchen, lol!   I have done many different diets over the years, including a year of a strict macrobiotic diet.  It is when I start becoming too ill, too run down, that I have trouble getting back to the diet, because it takes more energy to prep foods and I am minus the energy until I can stay on the diet!  You know how that works!  We all do!

Thanks so much for you comments!  I appreciate your efforts to share and to educate!

With Gratitude,

~Hopeful Heart~

Woa - that must have been so stressful for you and your family ... the loss of a home and the conditions thereafter. No wonder it was hard to keep to any diet. I'm so sorry. Did you suffer from PTSD as well?

BTW, are you on any probiotics?

Just want to let people know that I will be away for several days, starting early in the AM. If you leave a post, I am not ignoring your post. I will return and hope to catch up in about a week.

Thank you, each of you, for welcoming me and for trying to assist me.

I deeply appreciate your efforts to help!

I hope to also offer support here.

With Gratitude,

~HH~