Flare after 7 years and confusing GI visit

[TiffanyR]

Good afternoon, I hope everyone is well. I am dealing with what I believe to be a bad flare for the first time in 7 years since my initial diagnosis. I have had minor flares since then but have always been able to get things back in line with a bland / phase 1 diet. This is the worst I've felt since my initial diagnosis and I am unsure why I even got sick in the first place. The only thing I can think of is maybe I caught a bug and then spiraled from there or it was brought on by stress. It is quite frustrating to say the least.

Long story short, I was diagnosed with lymphocytic colitis 7 years ago after a colonoscopy. I had c-diff for three months with a few relapses and multiple rounds of antibiotics and even after being deemed clear of the horrible infection, I was still having bowel issues. Diarrhea, abdominal cramps, nausea etc. Thus why they ordered the colonoscopy. Upon the completion of the colonoscopy, I was diagnosed with lymphocytic colitis and prescribed (if I remember correctly) prednisone to help with the symptoms. After many months on the steroid, I begin experiencing secondary side effects that were almost worse than what I was being treated for. Upon doing my own research, I found this support group all those years ago and that is how I learned of the elimination diet and how much food effects those of us with these bowel diseases. Using the advice on here, I was able to wean myself off the steroids and be medicine free to obtain remission. I am gluten free and I limit dairy, seeds/nuts and citrus fruit. I guess that is why I am so frustrated with my latest illness, because I maintain my diet well so I am unsure why I am flaring all of a sudden.

I started getting loose stools on September 22nd and it got worse from there and turned into abdominal cramps and D a few times a day. I was worried I may have contracted c-diff again so my doctor ordered a full panel of stool tests as well as blood tests. All stool tests came back negative last week; no c-diff, no bacteria, no viruses, no parasites. Blood work came back this week and was normal as well. She was stumped so she referred me to a GI doctor. They were able to get me in today and ultimately is resulted in me being thrown through a loop. This was a different GI doctor from who I originally saw seven years ago (insurance change) and he reviewed my colonoscopy and pathology results and went over my symptoms since the initial diagnosis as well as my recent symptoms and he said that it doesn't appear that I have lymphocytic colitis but rather IBS. He said that the results and subsequent diagnosis following my colonoscopy were likely due to the damage the c-diff had caused and not an actual lifelong colitis diagnosis. He showed me the pathology report that states, "Part B displays a mildly increased lymphoplastic inflammation within the lamina propria with occasional intraepithelial lymphocytes within the surface epithelium and crypts. Cannot totally exclude chronic colitis ie lymphocytic colitis. No accute colitis or pseudomembranes identified". I am just shocked and don't know what to think. When I was awoken from the colonoscopy procedure all those years ago, I was given a sure diagnosis of lymphocytic colitis and sent on my way. He then explained the difference between the Chrohns and Ulcerative colitis diagnosis and the IBS diagnosis. Mainly pointing out that I do not have blood or mucus in my stools, just the D. He then prescribed Viberzi for my "IBS" and sent me on my way. He said if this medicine didn't work that we would re-do testing, ie colonoscopy.

My head is reeling, I don't know what condition I have now and feel lost. He made it sound like this new prescription should take care of all my problems and give me relief within a week. And while I was initially excited about that prospect (I am 27 and the D has made my life hell the last two weeks with my home life ie son and husband; and my full time work schedule) but after doing more research it appears this medication in the opioid category and that makes me fearful to take it. I also read it can be difficult to get insurance to cover it. Has anyone every dealt with anything like this before? A potential misdiagnosis and sudden flare.

I have lost 10lbs in the past two weeks of being sick and am struggling to eat for fear of having D. I am surviving on hard boiled eggs, applesauce, gf Schar crackers and rice chex. All of these things don't make me sick. I was feeling a bit better over the past weekend and decided to have some plain chicken and gf stuffing for dinner with a few m&ms for desert this past Sunday night and ended up sick again yesterday morning with D twice. I obviously pushed my digestive system before it was ready. I am hoping to add some protein back into my diet as well as cooked veggies in the coming days. I just worry that I will get sick again :( I need to work on getting my weight back up as I am 5'7 and 132lbs currently, usually closer to 140-142lbs. I am thinking I will try to add some cooked, mashed carrots or sweet potatoes back in so I can get some nutrients back in my system. I just don't know where to start, I feel like I am back at square one again. I have not had the Entero Lab testing done because I cannot afford the $500+ cost but I feel as though I have done well the past seven years with figuring out my triggers and avoiding them at all cost. Any advice would be appreciated. I am just feeling run down at the moment and lost ...

[tex]

Hi Tiffany,

I'm sorry that you had a relapse. I'm sorrier yet that you wasted your time seeing a GI doc who might be great otherwise, but if he has any valid knowledge of MC, he certainly managed to do a good job of hiding it during your visit. I'd also be afraid to take that drug. It will do nothing for inflammation.

If the flare refuses to respond to your best efforts, the Enterolab tests are currently Holiday Priced at $399, if you want to try to minimize your recovery time.

Best of luck in your recovery. Flares can be tough to break out of.

Tex

[TiffanyR]

Thanks for the reply Tex. The more I thought about the GI visit yesterday, the more upset I became. The Dr was useless, pushed a cruddy drug on me and sent me on my way. Do you think a prescription for Entocort would be more beneficial? I'd be willing to give that a try to help begin my healing and strive for remission. I see other people on here have used this medication before during their recovery.

*Edit- unfortunately we just don't have the money for the sensitivity testing at the moment. I'm hope I can use my Christmas bonus from work to get it then. If I do order a test, which one do I need?

[TiffanyR]

Another edit - I bit the bullet and ordered the A1+C1 test from EnteroLab as of this afternoon. Luckily the holiday pricing is in effect so it was a total of $429. I put it on the credit card so hopefully we can get that paid off in the coming months. Is this testing panel sufficient in finding out what my main triggers are? Also, on average how long did it take you guys to receive the test kit? And once you sent in the results about how long did it take you to get the results? Their website states that the results are emailed to you within 2-3 weeks within them receiving the actual sample but I am just curious as to others experiences with the timeline. Are there any known medications that would interfere or mess up my test results? I currently take two probiotics and a birth control pill daily; and Pepto as needed to get me through the work day. If there are any medications I need to avoid before submitting my sample, please let me know. I don't want to jeopardize my tests results, especially with how expensive it is! Any insight would be greatly appreciated.

[tex]

Sure, budesonide works well for most people, and it will allow you to continue to work without being bothered by MC symptoms. It begins to work to (mask the symptoms) for most patients within a few days. Be aware that after using it for longer periods (more than a few months), it may begin to affect your immune system's ability to respond to your sensitivity to certain foods. IOW, your immune system's ability to produce antibodies may be restricted as time goes on. That means that some of the EntroLab tests might lose some of their sensitivity for certain foods. they might still work, just at a lower response level. After a year, they would lose most of their sensitivity, except for gluten.

The most important part of a budesonide treatment is tapering the dose to wean off the drug as the treatment is ended. The slower the dose is tapered (over several months, at least), the better. Stopping too quickly, may trigger a relapse, due to a mast cell population rebound. Virtually all doctors prescribe a tapering process that is way too fast.

Regarding which tests to order — most people order the A2 Panel plus the C1 Panel in order to get optimum food coverage. That's the package (or maybe it's one of the packages, I haven't checked) that's on sale.

Tex