How to Control Pain the GI Doctor Says I Will Have Forever

[MamaBeabs]

I am already on every limited diet possible and my GI doctor and nutritionist agree. But my doctor has explained that I have an abnormal case which he believes I have had for more than 15 years, and medication may or may not ever help the inflammation, at least for a very long time. The pain is debilitating and I have only found CBD Oil to be useful. Also, the pain I have described is exactly where the MC is located in my body.
I thought that the CuraMed (Curcumin and Turmeric) and BosMed (Boswelia Extract) was helping. I stopped it before the Colonoscopy and haven't started it up again. Can anyone advise? Thank you!

[tex]

medication may or may not ever help the inflammation

Now that's a true statement. We have to stop the inflammation with our diet changes, and that requires some time. The diet doesn't bring instant remission. For almost all of us, it takes much longer than we think it should. You may well be on the right track with your diet, but you have to stick with the diet and persevere for months in order to begin healing.

TBH, the claim that your case is "rare" reminds me of the BS that many gastroenterologists dream up when their treatment doesn't seem to be working. In your case he seems to be rationalizing his failure to understand your MC. It's your doctors way of explaining why he doesn't understand why you have pain in the first place. The initial official medical description of MC does not include a mention of pain, so it's not surprising that many doctors believe that MC is not associated with pain (so they decide that when confronted with a case that involves pain, they must be dealing with a "rare" case.

Yet at least half of us experience pain with our MC. For some of us, the pain is severe, others not so much. My own pain was debilitating when my MC was active. Many here have compared the pain pf MC with the pain of childbirth. When I finally got all my symptoms under control and my gut healed, the pain completely disappeared. That happens in every case. The pain always resolves as we bring the MC under control by stopping the inflammation. If you still have pain, you still have active MC. It's that simple.

I'd be very interested in hearing the details of any MC case where clinical remission and restoration of colonic mucosal cellular histology has not also brought resolution of pain. Because that would indeed be rare.

I apologize, but I can't tell you a good way to stop the pain — I just assumed that it was part of the disease and I toughed it out. I have a hunch that many members here have lived a similar experience. One of the few good things about MC is that after we get the disease under control, it becomes much easier to live with as time goes by.

Tex

[brandy]

Most of us are back to normal at the 2 year point....some at 6 months and some at 18 months. I found ice (frozen bags of peas)
helped with pain.

Time plays a huge role in healing.

We've had some folks struggle for 30 plus years b/f diagnosis and yup, it took time, but they healed.

[brandy]

I can't remember if you are on any prescription drugs. One of the noted side effects (albeit a small percentage)
of budesonide is.....pain.

[MamaBeabs]

My doctor did reduce the Budesonide, and opted for a longer course. Overall, from what I hear about other doctors he is relatively in touch, especially with dietary recommendations. He does believe that is the only way to having less inflammation and less pain in the long haul with possible times that may require medication, or a maintenance dose for some time. He said that I might be in remission in 6 months or 6 years but a lot depends on me and how well I maintain my dietary limitations. I never said he said my MC was rare. He said that it is abnormally advanced, that I have clearly had it for many years without ever being diagnosed. I am not surprised. I was healed from Hep C from a blood transfusion I received at the hospital. It was also an advanced disease I had for at least ten years. The difference was that I had the miracle drug Harvoni that cured me in 5 months.

In your case he seems to be rationalizing his failure to understand your MC. It's your doctors way of explaining why he doesn't understand why you have pain in the first place. The initial official medical description of MC does not include a mention of pain, so it's not surprising that many doctors believe that MC is not associated with pain (so they decide that when confronted with a case that involves pain, they must be dealing with a "rare" case.

I have fired a lot of doctors over the years and also successfully fought two HIPPA battles this year alone. I disagree with your assessment of my doctor rationalizing his failure to understand my MC. I felt he absolutely understood and was honest and forthright about the time it could take to heal, as many have said on this site it took them upwards of 6 years and as many as 30. Well, I don't have 30 years. I also felt that he was the first doctor I have seen this whole year who validated the exact location where I have said repeatedly my pain and inflammation is at and was able to show me the very site in my colon from my colonoscopy photos. Finally a doctor who isn't blowing me off! I felt he was genuine in his compassion about having to live through the pain until I found relief through drug therapy and most especially a strict diet. My husband and I felt the doctor had a clear understanding that MC causes pain, that Budesonide causes nausea and constipation, and that healing takes time. He shared different treatment plans in the even Budesonide would not be a viable option for me.

I feel he believed that once the MC was under control so would be the pain, he just could not give a definitive time when that happen and I doubt anyone on this site could either. Everyone is different.

I have really appreciated being able to find support on this site and no one understands better than I do about lousy doctors. I am on my 4th GP this year. When a good doctor comes along I think it is a disservice to undermine his/her credibility simply because of a prejudice against most Gastroenterology doctors. I believe that people stand on their own merit, as does every other human person, and not every one of them should be lumped into a group of failed doctors who don't know how to be sensitive when patients are suffering.

I would find this a more helpful site if there wasn't an anti-doctor sentiment at a time when people are trying to get the best medical care they can find. I need a place that is supportive and open to all forms of healing including medicine, and it seems most people on this site need medicine. I am sorry for what you experienced through your years of having MC. I have experienced misdiagnosis by other doctors, including those who missed all the red flags of my MC. Yet it serves no good purpose to support resentment toward anyone (the few or the many), especially when it comes to health and well-being. Resentment, bitterness and condemnation of others only causes stress, and that is the last thing anyone with MC needs.

Everyone suffers in one way or another. Everyone. But when we come to a place like this site that is supposed to be healing, I see no value in verbally attacking "most" MC doctors. I, for one, am glad I was finally diagnosed, and have found a supportive GI nutritionist who suffers from Colitis and Auto-immune disease, and a doctor who performs colonoscopies yet takes the time to have patient relationships to answer their questions, share treatment options, and show empathy.

[tex]

You can misinterpret my post as prejudiced if you choose, but I stand by my observation that your case is not rare or even abnormal. I understand that you probably feel that it is, but it's actually rather typical of many of us here. It's great that you've finally found a doctor you like, and I hope he can live up to your opinion of him.

Tex

[brandy]

Generally on forums folks that are struggling are the ones that are posting. Folks who have great doctors, respond well to prescribed meds, are referred to dietitians/nutritionists that "get" our disease, have no problem getting off of meds are generally
doing well, working, living their lives, travelling, and not posting on forums due to their lives being good.

If you've ever hung out on Crohn's or UC forums the tone of this forum is way more positive than those. Tex took great pains
to write his book (the only book on MC) with a pro doctor tone. Our foundation and foundation newsletter is prodoctor.

[Lisa_D]

Hi MamaBeabs,

I experienced cramps/pain with my MC and found that Boswellia was helpful in reducing the pain.

I use a brand called "Pure Encapsulations" which can be purchased on Amazon. The dose my doctor recommended is 1200 mg taken throughout the day. My understanding is that this dose has been studied in Ulcerative Colitis and has been shown to help with inflammation.

I've had good luck with it -- although I understand that others on the board have not. You may try adding back the Boswellia or asking your doctor about the dose as we're all different.

I haven't experienced any benefit from turmeric -- I tried it for several months and then my doctor and I both agreed that it wasn't doing anything. My understanding is that the dose needs to be pretty high (1500 mg twice a day). My doctor does say it helps many people and it's one of his "favorite" supplements so you might give it a try again.

Hope you feel better soon!
Lisa

[dolson]

Mamabeabs, please understand, me for one, that many on this post have had MC all their life. I can show you a picture when I was 2 years old, bloated stomach, holding my abdomen in pain and my dress was ready to pop because of bloat. I did not grow hair until I was around two years of age. I remember that pain. It went away, but would come back. Now I'm into the diarrhea/constipation stage and I am lost. This is a Mystery Disease. I've had bloating all my life. This is a monster disease and sometimes we have to Vent!!!!! Where else can we Vent? Our GI specialists treat MC like a sore thumb. A support group like Wayne's is wonderful because many of us get despressed, angry, don't want to live anymore and death looks like an option. This site is for us to Cry, Complain, Bitch and Gripe. This support group is for all of us. Consider yourself lucky! Warmest Regards, Dorothy