Anti depressant usage as mental breakdowns!

[barbiem]

Hi all,
I was on paxil for 15 years due to severely low thyroid and weaned myself off using Prozac 3 years ago. I was on Prozac just 10 mg for a year prior to developing MC. I removed Prozac eff dec 2012 thinking it may have been contributing to my disease with fillers etc.

Now I am really having some major mental breakdowns, crying a lot, depressed, want to die, etc. etc.

It comes in spurts where I feel sorry for myself being unable to eat anything good ever again. Also being stuck eating the same 4 things day in and day out. Realizing if I stay on just chicken and green beans I don't have a BM but I am starving to death!

Today I cried for 5 hours straight then tried to listen to some meditation tapes.

I am at a loss - is this a normal part of experiencing this debilitating disease? I just don't think I am strong mentally to handle this. I am tired of researching, I am frustrated with doctors, I am broke and I just don't want to do it anymore. I want it to be back the way it was before. How did you all get to a place of acceptance??

thxs

[DJ]

Hi Babs. I'm sorry that you are going through difficult changes. One good thing is that you joined this support group and that you are connected to people who care about your well being and can support you with ideas and understanding. In turn, you are helping others who may be going through symptoms and feelings similar to yours. I have LC too. We need to take baby steps.

You are saying that you eat chicken and green beans only. You mentioned that you have fat malabsorption. What dietary advice were you given related to that?

I don't want to send you down the wrong path but if it's not contradicted for you.......can you expand your diet with some of the foods that people with LC often tolerate? I found some very good millet bread in my very large local health food store. It's from Sami's Pita Bakery in Tampa, Florida. It seems that they deliver frozen bread to health food stores all over. I'm in NY. Check www.samisbakery.com This bread agrees with me.

Some people in our group do not do well with sugar and I don't know what impact sugar has on your malabsorption condition. Are you able to tolerate sugar? Have you been advised against it? When I was at your point, losing weight, flooding diarrhea, etc., I found sugar useful and it didn't seem to make matters worse in my case. I drank Gatorade, black tea with sugar, and gingerale. I really needed the calories. Can you eat rice or sweet potatoes? Those were some of my early foods. Rice Dream Rice Drink was one of my early foods too. It's good in coffee and tea. Have you tried lean ham? I ate fatty meats such as bacon but I don't know what impact that has on your malabsorption issue.

Keep moving forward one step at a time. If you feel that you are deeply depressed, seek help with that. Talk therapy helps many people and a therapist could help you to decide if you need something more.

Take baby steps but keep moving! It's harder to hit a moving target

[lorimoose]

Hi Babs,

I am so sorry to hear how sad you are feeling. It is hard to cope when you try so hard without seeing real progress. I think you should seek immediate help from a trained mental health professional. They have medications and treatments can help lift this veil of misery. It is hard to see that you can get better, while you are drowning in sorrow.

This is not a normal response to dealing with this disease...as debilitating as it is. This breakdown is an emergency, and you deserve loving care to get through it.

With hugs across the miles,
Lori

[barbiem]

Thanks Lori and DJ - I usually go through this every 2 weeks or so but this one I can't seem to get out of.

I have been grain/gluten/sugar free since last March. entocort did not work after a month of being on it so they stopped it. Tried SCD and had major die off broke out in itchy itchy bumps that looked like bug bites that lasted a month. Then again in May another month long episode where now I have scars all over from itching them to bleed.

I react to everything - I currently find if stick to just chicken and some bison and beef hormone antibiotic free I am good. Used to eat SCD yogurt daily x 3 with avocado but my dietician wanted to try FODMAPS on me and took it out. I think that is where the weight loss is coming - not from the Diarrhea but from being unable to eat anything. I was diagnosed with fat malabsorption in May and was immediately put on pancreatic enzymes which helped immensely but still couldn't eat much more foods. I could at least keep the yogurt in me etc. Whenever I add anything in be it rice, rice flour, amaraneth flour or brown rice flour or flax etc. I flare up for at least 2 weeks. I just want to eat something other than protein to put some fat on my bones. I really look anorexic! Cannot have any fruit/sugar etc as just finished battlinig a bad case of candida. No more bananas ever!! I use a bit of maple syrup organic in my yogurt and have that for breaky and can seem to have better mornings now that Tex recommended taking my entocort in the AM instead of at lunch!! Also my reg dr and I just discovered that entocort doesn't last very long so he is asking my GI specialist for entocort MMX - slow release to see if that will help me.

I have tried everything from massage, raindrop therapy, live blood analysis, meditation, restorative yoga for stress relief, used up all my mental therapy coverage etc. etc. with no change. I just react to everything and I am DONE with this. Doctors know nothing! My GI specialist said well I understand your quality of life is not good but there is nothing else for me to do besides take out your colon. WOW!! IDIOTS here in Canada - and it takes over 6 months to see someone. It took me forever to get a colonscopy and even then the one GI said well if entocort doesn't work then no other steroid will and he threw up his hands and said good luck with the SCD diet then. Found another who did at least discover I had fat malabsorption issues and fixed that so at least I could eat a bit more foods. But now it's why can't I eat any carbs at all or any flours/grains that are gluten free?


I have to get my life back and am so thankful for this group . My family doesn't understand how difficult it is for me to see them eating, all the food around. I can't even watch tv anymore because of all the food !!

thanks for letting me vent.

[CathyMe.]

Hi all,
I was on paxil for 15 years due to severely low thyroid and weaned myself off using Prozac 3 years ago. I was on Prozac just 10 mg for a year prior to developing MC. I removed Prozac eff dec 2012 thinking it may have been contributing to my disease with fillers etc.

Now I am really having some major mental breakdowns, crying a lot, depressed, want to die, etc. etc.

It comes in spurts where I feel sorry for myself being unable to eat anything good ever again. Also being stuck eating the same 4 things day in and day out. Realizing if I stay on just chicken and green beans I don't have a BM but I am starving to death!

Today I cried for 5 hours straight then tried to listen to some meditation tapes.

I am at a loss - is this a normal part of experiencing this debilitating disease? I just don't think I am strong mentally to handle this. I am tired of researching, I am frustrated with doctors, I am broke and I just don't want to do it anymore. I want it to be back the way it was before. How did you all get to a place of acceptance??

thxs

Hey Babs, I'm so sorry that you're suffering. And yes, I think we all go through a spell of, "feeling sorry for ourselves" for lack of a better term. Have you had any food testing done through either MRT or Entoralab? Once I had the MRT testing done, it helped guide me to foods that were okay to eat and ones I had to stay away from. It was very upsetting to me at first to have to give up chicken, beef, corn, etc., etc., but once I got my diet squared away, I was able to go off all drugs and have had normans for close to 7 months. I know for myself I look @ food completely differently now than I used to and realize that if I eat something that I'm not supposed to, it is like poison to my system and it's just not worth it. My diet is very bland to others but people close to me realize that's just the way that it has to be for now. In the beginning, I packed ALL of my food around and did not eat out @ all for fear of contamination. While I will pack food now when I travel, I am able to eat @ salad bars, etc. and now ask for my seafood to be plainly cooked. I continue to be astounded at how easily restaurants will accomodate my diet. Again, I would recommend having the testing done to get you in the right direction and then go from there. Good luck to you hun!

[Joefnh]

Hi Barb, it really sounds like you are having a tough time right now and it sounds like you are most likely fighting 2 things at the same time, MC / diet issues & depression. At least in my opinion the 2 can be tied together.

I will echo what CathME mentioned regarding either Enterolab or the LEAP MRT food intolerance testing to help figure out what may be an underlying cause of the GI issues. I have been at this for about 4 years now and have both MC and Crohns to deal with and have found that the diet is key to feeling better. Initially I found a lot of relief in removing gluten, soy& dairy but then it seemed that the GI symptoms were still somewhat problematic. I went ahead and was tested by MRT and found out that I was reacting to rice and tilapia...both items that were in my diet at the time, especially rice. I removed rice and that made a big difference. Over time I found out by trial and error other items like wine were also an issue so I removed those.

For the next couple of years things were not too bad, not perfectly normal, but good. Recently due to another diagnosis and the stress that brought I did accept that an antidepressant might be in order. Initially I made the mistake of taking Zoloft which as I found out actually causes MC and it did flare things up quite a bit. I switched to Wellbutrin (Bupropion) and wow what a difference that made, not only in depression but also my GI symptoms. For the first time in many many years I have had normans pretty much every day. We have to remember that the neuro chemicals that are addressed with antidepressants do play a role in our GI systems. Overall in my case it was the combination of food tolerance testing and a MC friendly antidepressant that finally brought the pieces together and brought about full remission.

I hope you can work your way through the maze as well, it will most likely take you taking control of the decisions regarding testing and asking for a specific antidepressant if you feel you still need one to gain the upper hand with MC. It sounds like you understand the role food plays, but still may having an item that is giving you problems. I hope you can look into food intolerance testing as that really is like turning the lights on in the room, all of the sudden you can see where the obstacles are and avoid them. As a side note many here have had excellent result with Wellbutrin in helping both depression and their MC.

Best of wishes

Joe

[barbiem]

thanks sooo much for the advice - I will give wellbutrin a try - no luck with Prozac anyone??

I have had the IgG antibody testing but not much showed up - a few items like halibut which I was eating a lot of when I broke out in those hives I mentioned.

I just can't afford the cost of the testing unfortunately. Very expensive to order and then ship from Canada in 2 days. I will first see what the allergist shows on Tuesday and go from there I guess.

I do understand diet plays a huge role and I do believe it's a histamine issue for me but i can't get past the fact that I will never be able to have anything yummy anymore :(. so sad - I am in mourning obviously for months yet can't get out of it. I called our mental health clinic and will be seeing someone tues to hopefully help.

Joe, I didn't know you could have MC and then still get crohns? I ordered the 23andme test and crohns was up there for me but not colitis. weird?! I hope that's not where I am headed!! I will get on the wellbutrin - I have Prozac at home but if that isn't recommended I will definitely get the other!

I have read there is no point doing the testing if still on entocort? I don't think I will ever get off it so what do I do?

thxs guys!!! appreciate you listening and helping me through this.

[Joefnh]

Hi Babs, yep you can get both Crohns and Colitis. For me the MC of course is in the large intestine (colon) and my Crohns is in my small intestine, specifically in the jejunum, It got bad enough I had to have a piece of the jejunum removed. So overall lots of GI 'fun'. Recently though I was Dx'd with Myasthenia Gravis (MG) (generalized). Which is similar to Muscular Dystrophy and Multiple Sclerosis....another autoimmune condition to have fun with. Between this and the GI issues I did make the decision to start taking a antidepressant as all of this was getting to me.

The Wellbutrin (Bupropion) is a very different and frankly better type of antidepressant as it works on 3 neuro chemicals as opposed to 1, which most deal with. I don't consider myself severely or significantly depressed but I was struggling and the Wellbutrin made a big difference and really did help with the GI symptoms.

Babs I hope you start feeling better soon. Don't be afraid to suggest and outright request a certain treatment or test with your doctors, often we have to be our own advocates and help direct the path of our medical care.

Take care

[barbiem]

Thanks Joe - wow and I think i have it rough!! I hope i don't get crohns now too !! How long after MC did you get Crohns? have you thought of using LDN for your autoimmune issues??

babs

[Joefnh]

Babbs both the MC and Crohn's were Dx''d within a couple of weeks of each other. The doctor was looking for Colitis, but i also had a blood test that suggested Crohn's, so right after the colonoscopy, I had the pill camera. The big pill you swallow that takes pictures as it goes through your GI tract. That showed the Crohn's and was combined with the barium swallow tests at the same time which showed fistulas forming.

To make a long story short the Crohn's was probably active for a few years prior to the diagnosis and had gotten to the point that I needed surgery to remove a piece of my small intestine (jejunum) as it was fairly damaged by the Crohn's. That was the first of 3 bits to be removed from my GI tract. Thankfully with meds like Imuran and a strict diet both my Crohn's and MC symptoms are well controlled.

Overall for me it took a strict diet eliminating gluten soy and dairy as well as a few foods that my MRT testing identified, this was combined with a immune suppressant Imuran which really calmed things down. A few of us here have had good luck using Imuran to calm down the GI MC symptoms

I have read several members here using LDN and it has worked well. On the website I am also a member on for Myasthenia Gravis there is also some recent interest regarding LDN.

Well thats my story in a nutshell Babbs

Joe

[barbiem]

does Imuran work for mast cell activation disorder? I am wondering if I should use that first instead of LDN but LDN has no side effects and an immune suppressant does.

I really just want to eat some foods other than chicken, beef, green beans and carrots LOLOL!! I guess my time will come.

thxs for you help!

[Joefnh]

Babbs I would say address dietary restrictions first and the possible depression. Wellbutrin is known to help GI symptoms and if you can address the mood / depression issue and help your GI symptoms, I would do that first. Basically I would use immune suppression as a last resort. The meds while used for a long time are not without their risks and if you can sort through he dietary issues and the depression you may find you can achieve control that way without needing the "big guns" medically like Imuran.

With MC sorting out the dietary issues should be the first line of treatment, supporting that with Entocort can help in the short term. Certainly if you can eventually get the food intolerance testing that would be great and will provide you with a guide going forward. You can also sort the intolerances out slowly through a strict diet, trying one food at a time and keeping a food journal. Several members here have been successful with this method.

If you can get support to try the LDN, I would say its worth a try and seems to be fairly safe. I have also been following Zizzles thread regarding Kiefer and that also sounds like its worth trying.

Bottom line if other methods to control MC can be used successfully that would be best, if however those are not working or tolerated, trying an immune suppressant may be worth it, at some point you do need to regain your quality of life. I just would make sure I have exhausted other treatments including treating the depression first. The good news is that you have options and there is hope

Best of wishes Babbs, we are all here for each other and appreciate you sharing your experiences.

[sunny]

Hi there! i was so touched at your post and understand first hand the emotions you describe . I think you are right on when you said you thought you were grieving.... you ARE grieving a significant loss! Just as we grieve at the lost of a special relationship or the death of a loved one or beloved pet, some of us grieve the loss of the foods that are tied to family gatherings & happy memories. I was fighting tears in the grocery store as I walked down aisles of food I simply can't have.... and I feel the same frustration you described about TV ads....
No wonder you feel depressed!

I'm thinking it might be good to be evaluated whether this is just a situational feeling down kind of thing or something much deeper, bigger than you realize.
Grieving loss is a thing I deal with all the time; sometimes the present loss brings to the foreground another loss from a long time ago that I haven't really dealt with completely. I have learned to see this moment's grief as a way to finish some unfinished business from my past. For me, they are often linked and thus the present grief is exacerbated by past losses.
Perhaps you could explore this idea when you see your counselor next time.
It helps me to share with a loving friend.... just getting these feelings out can be enough; I journal the feelings now & look for ways to heal... a therapist or a friend, journaling, an article perhaps. I have ordered Toni Bernhard's book. "How to be Sick." She writes aobut learning to accept not struggle with illness and I have a hard time with that. lIke you said... I just want it to be like it was!!
You are dealing with a tremendously difficult diagnosis and it is devastating when our docs have few answers and we feel all alone. That's why it is so helpful to come online with this group & you suddenly see that you are NOT alone & that is half the battle.
Please take in the fact that are people here who really care... and I am one of them!

[barbiem]

thank you both - it means a lot to have someone who understands what I am going through. I just came back from an energy healing/hypnosis session and could not hold back the tears when we started talking about the loss of my soulmate - my dog. I am a dog trainer and had to put my dog down on xmas eve 2 years ago and I still haven't gotten over that. The loss of food now just makes me sooo depressed as if everything I loved has been taking away from me. I have lost all interest in my dog business, or even my other dog sad as it is. Annie was my best friend and she gave me love like nothing I have ever felt before. Then food did the same for me. Now both are gone. Feeling like this sucks and I am going for help on Tuesday with our local mental health unit. I am going to have to go on wellbutrin as I can't do it anymore :( This is just too difficult and I have been battling this for over a year with no success. Drs have no answers but remove the colon. WOW! It makes me sad. Whatever happened to drs who search for answers and ask lots of questions to try and determine what is going on in your body? alternative drs do this but cost a fortune - can't even work how am I supposed to afford that. I know there are others out there worse off than me which I try to keep telling myself to help me get out of the rut I am in.

I am so glad I have found this group and have some hope this might end soon.

thanks again for the words of encouragement it means more to me then you will ever know!

babs

[DJ]

I have been grain/gluten/sugar free since last March. entocort did not work after a month of being on it so they stopped it. Tried SCD and had major die off broke out in itchy itchy bumps that looked like bug bites that lasted a month.

My GI specialist said well I understand your quality of life is not good but there is nothing else for me to do besides take out your colon.

I hope your day got better. I looked up the SCD food list. Yikes! If I ate some of those foods I would be starting from square one, pooping my brains out again. I'm glad that you went back to basics. You mentioned earlier that you hate the thought that you can never eat anything good again. I'd like to share my thinking: I've been reading the postings of many people and the long term outcomes vary greatly. I am guessing that many people used this group, did well, and moved on. I don't know exactly what my dietary tomorrow will be, I just know what I need to do in the short term. That is, I need to allow myself to mend. As you know much too well, that sounds easier than it is. We all need to find foods that are healthy for us and we need to identify our dietary triggers so we can avoid them. You are doing what you need to do in the short term - You are figuring things out.
Concerning the comment by your GI specialist, he has the charm of a hand grenade. He said that there was nothing more for him to but I think a more accurate statement would have been "I don't know what to do next".
My doctor was able to provide me with a diagnosis and Entocort but the information that will bring me to better health came from here.
I can see from your posts that you are making excellent plans for next steps. Bravo!