Discouraged

Adele13348 · Post by **Adele13348** » Sun Mar 18, 2018 10:02 am

I was diagnosed 7 years ago and have been following this forum for some time. Within the last year my MC has gotten much worse. I have 8-10 watery stools per day. I find it hard to leave the house. I have lost 40 pounds in the last year. Colonoscopy shows no change except for a polyp recently found with mast cells. I have been living on chicken, tea, bone broth, rice and potatoes for 4 weeks now with no change. I had Enterolab done which showed gluten and oats as problematic. I have been gluten and dairy free for years. I have stopped all my prescription medication with the exception of my SSRI which I am weaning off over 3 months (am finishing month 1 this week). I switched all my OTC meds to GF,DF varieties. I currently am taking vegan multivitamin, D3, Remag, and Zyrtec for the mast cell issue. I started Chinese acupuncture with herbs last week. The only good news (and this IS a big deal) is I am no longer taking Botox injections for my migraines. They have almost disappeared and when I do have one it is very mild. I have Maxalt and Fiorcet for that if I need it'll it. What am I doing wrong? Am very depressed. Thxi

Post by **tex** » Sun Mar 18, 2018 5:32 pm

Hi Adele,

Sorry to read of your problems. If you have mast cell issues, the chicken is probably your problem. EnteroLab doesn't test foods for histamine issues — only antibodies. Chicken is often a high-histamine food. Try switching to turkey (or lamb). Turkey (or lamb) doesn't cause histamine issues (or antibody production) for anyone.

Also, when you have histamine issues, SSRIs are more critical. SSRIs regulate seretonin and the intestines contain something like 80 % of the seretonin in the body. Therefore, it's possible that you are reacting because of the SSRIs. I would bet that the SSRIs are your problem, and your symptoms will cease after you wean off of them completely. There's a remote possibility that you might be reacting to weaning off the SSRI. But as I said, that's a remote possibility.

I hope this is helpful.

Tex

Adele13348 · Post by **Adele13348** » Sun Mar 18, 2018 8:27 pm

Thanks Tex. Also, would it be wise to go back on the Entecort til I'm off the SSRI?

Post by **tex** » Sun Mar 18, 2018 8:51 pm

To be honest, if the SSRI is the problem, I doubt whether Entocort would be able to overcome it. It doesn't seem to be able to in many cases. There's a chance that it might, at full strength, but I would think that any dose less than full strength would be much less likely to work. It's worth a try, if you don't mind taking the drug.

Good luck.

Tex

Adele13348 · Post by **Adele13348** » Sun Mar 18, 2018 8:54 pm

I hear what you're saying. I had no side effects in the past so I may try it. I think I will also try accelerating my SSRI withdrawal.Thanks again.

Gabes-Apg · Post by **Gabes-Apg** » Wed Mar 21, 2018 6:02 pm

adele
sorry i am a bit late chiming into this discussion.

going off the SSRI is a good long term option for your long term stability of MC issues.

please ensure that you are supplementing with good quality Vit D3 and magnesium - both these will help with anxiety/depression symptoms and support the body during transition process.

Also check out article by Kelly Brogan - she has lots of good resources and links that can help you with the mental and emotional aspects.

Adele13348 · Post by **Adele13348** » Wed Mar 21, 2018 8:29 pm

Thanks.

Lisa_D · Post by **Lisa_D** » Thu Mar 29, 2018 5:41 am

Hi Adele,
I've read Kelly Brogan's book and found it to be a helpful and interesting resource as I transition off my SSRI. I will say that Dr. Brogran's advice is to go very slowly off of SSRIs (sometimes 6 months - year) otherwise her claim is that you can get nasty side effects from SSRI withdrawal and end up right back on the full dose of the medication. Of course it's all personal and she doesn't specifically cover the experience of MC.

I've been very slowly coming off my SSRI and as I've been doing so, the Entocort has had a heck of a time fighting the SSRI.(as in, the diarrhea is still pretty frequent)

Finally, I will say while I believe the natural supplements are potent and enough for most, there are other psych meds that don't work on serotonin and may be worth a try. There are many psych meds outside of the SSRI and SNRI classes of meds. I'm fortunate to have a doc that I trust and he's been able to work with me to identify some medications that are less destructive on the gut. So I hope you know that if you get too depressed or anxious, it is possible to find other options!

Take Care,

Adele13348 · Post by **Adele13348** » Thu Mar 29, 2018 9:50 am

Lisa D,
Thanks so much for your message. I guess it's time I bring this thread up to date. I am almost off my SSRI (Saturday is my last 10 mg dose - I weaned over about 6 weeks) and thankfully I have had few side effects. I know I have a ways to go before it is completely out of my system but I am encouraged by what I have seen thus far. I am a trained counselor so I made a plan for how I was going to approach the negative thoughts and physical ailments I might encounter. Aside from some episodes of negative thinking (used a little Cognitive Behavior Therapy then), I have done well. I don't know if it is the acupuncture and Chinese herbs (I'm going there 2x per week) or if all the other changes I made are finally kicking in, but I am down to 2 trips to the bathroom per day in the morning; a vast improvement over where I was a few weeks ago. I am even beginning to introduce some foods again and so far, so good. Occasionally I will have a bad day which is usually directly related to something I ate (gotta read those labels more!) but I have no one but myself to blame for that. All in all, I am in a much better place than when I wrote that first post and I am very, very thankful for that. Thank you to Tex and Gabes and Lisa D for supporting me and giving me a place to go when life is not working well. Hope I can continue to report success. BTW, I had asked Tex about going on the Entecort again. I did not do it. I have taken Uceris a couple of times when I have had events that I really wanted to go to and wasn't sure of the bathroom arrangements. I know, you're not suppose to take it like that, but it works and at least I'm not on it full time. Hopefully I'll be much better by September when I'm going on a tour to Ireland for 10 days! Thanks again for all your help.

Post by **tex** » Thu Mar 29, 2018 12:34 pm

Adele,

Thanks for the update. It sounds as though you are on track and doing well.

I hope your recovery continues to go well.

Tex

Adele13348 · Post by **Adele13348** » Thu Mar 29, 2018 5:54 pm

Thanks Tex.

Lisa_D · Post by **Lisa_D** » Mon Apr 16, 2018 4:40 am

Adele,

I'm glad to hear that you came off the SSRI and it sounds like things are heading in the right direction. A couple of thoughts came to mind as I was reading your post:

--Dr. Brogran's thesis (at least as I understand it) is that Depression is an inflammatory condition. This means that she makes dietary and supplement recommendations primarily to fight inflammation. I've found her diet recommendations to be helpful in both managing my mood and MC.

--I've also found acupuncture to be a very helpful tool. Again, at the most basic level, my acupuncturist explains that acupuncture can help manage inflammation. However, there are many specific acupuncture protocols for a variety of conditions (there is an electro-acupuncture treatment that is particularly helpful for depression and increasing serotonin)

--My GI notes that Entocort is more effective than Uceris in managing MC. I've tried both and found that to be my experience, but of course use whatever works best for your body.

Good luck!

Adele13348 · Post by **Adele13348** » Mon Apr 16, 2018 4:31 pm

Thanks Tex. Interesting concept re depression. I am retired from the mental health field so this interests me. I have done really much better than I expected without the SSRI. When there is a problem, some CBT helps alot. The acupuncture is going very well and has been very helpful as well as the Chinese herbs. My migraines are all but gone. Am able to expand my eating repetoire with caution and am starting to see a very positive change in the bathroom. I expect setbacks will be the norm but I am ready, mentally, for when they happen. I can’t thank you and all on the forum enough for all your support.

deharlz · Post by **deharlz** » Fri Apr 20, 2018 9:10 am

I finally got past my skepticism and saw a naturopath. She is nationally recognized and well thought of in the cancer community in Eugene. I was amazed at what she had to say. One of the things that was suggested was to do 23 and me that includes the medical portion. The results that the subscriber gets are cool but apparently you are given some sort of 'number' that the naturopath can access your total results which indicate any genetic deficits. This helps to address these issues. She is working to heal the gut lining rather than just mask systems. I am just finishing my taper off of budesimide and hope to never take it again. No doubt that dietary changes are the first line to foil the colitis but this is taking it many steps further into the underlying problems. Might explain why we are all so different in our MC?