Went down a different path to deal MC and it didn't work

[suzieq]

Hi all,

It's been awhile and I'll try to keep this short. After my last flare which lasted from Nov. 2017 to March 2018, treated with budesonide and colestipol, I was in a 3 month remission which started going downhill in July. My intestines started churning a lot but BM's were Normans until 3 weeks ago, when the s**t hit the fan. I started to work with a nutritionist in January. She has me taking digestive enzymes, L-Glutamine and psyllium. My Enterolab results show I am gluten, egg, soy and casein sensitive. I provided my results to her, she wanted me to have more tests saying that Enterolabs tests weren't the correct tests, I didn't agree to more tests. She wanted me to slowly add these foods into my diet which I did sparingly (except gluten) and to slowly add some high fodmap foods, which I tried a few times but I generally stick to a low fodmap diet. That leads me to today, I started 9 mg of budesonide and colestipol, luckily I have enough left from the last flare and I'm back to sticking to a strict gf, cf, sf and ef diet. I'm discontinuing the psyllium, which I questioned, I don't think fiber is an MC'ers friend. As for the nutritionist, she is a friend of my daughters and I'm in a delicate situation on how to handle her right now. I should add that I've been stressed out lately and the nutritionist wants me to talk to a therapist. I moved 25 miles, moving from NC to SC, but still near to Charlotte, NC and my insurance has changed. I do not know if I can see my GI Dr. or not. The GI Dr just moved from one practice to another and I have to find out if the new practice will take my insurance. I have to find a closer primary care as well. I've been having trouble with my eyes, in December a floater invaded my left eye and is still hanging around distrubing my vision and in June another floater invaded my right eye and is disturbing my vision as well. They could hang around up to a year. If I had previous cataract sugery they could do laser surgery to get rid of them. I also have bad osteoarthritis in my thumbs and my right pointer figure is growing bumps that hurt a lot. Anyone else with MC have eye problems?

Any thoughts, ideas and advice would be greatly appreciated.

Thanks,

Susanne

[Marcia K]

Hi, Susanne. When I eat too many processed gf foods I will get pain in my right eye. It scares me because I have a friend with uveitis. If I lay off the "junk" food the pain goes away. My vision is blurred at times but I don't have floaters. I understand the predicament you're in with the nutritionist being a friend of your daughter, but I don't take advice from anyone who doesn't have this disease. Doctors, nutritionists, etc. really don't know how to treat MC. I wish I could be of more help to you.

[henrym]

You’d better cut out all the things your nutritionist prescribed and advised you to add back to your diet! The nutritionist clearly has no idea what she is dealing with. It shows from the poor advise.. I hope you will feel better soon!

[suzieq]

Thanks Marcia and Henry, I have cut out the psyllium, back on strict gf, cf, ef and sf but I am still taking the L-Glutamine. I have read that it could be helpful for MC.
What scares me is that before the flare I seemed to have lost some weight. I'm 5' 6" and 98 lbs right now, I definitely wasn't trying. That scares me a bit. Anyway, I have no one else to blame but myself for going against my instincts in working with a nutritionist.


Thanks,

Susanne

[nancyl]

Susanne,
So sorry to hear about your MC troubles. It is hard to get under control, but is possible. Of course I cheated and took budesonide, when the D was a bit under control my doctor switched me to Imuran. I am still on it, but the lowest dose possible and may be off of it in another month. I just wanted to add that I took L-glutamine for several years. As you know, it helps to rebuild cells. I think it did help, wasn't expensive and didn't have any side effects. I stopped taking it about 6 months ago as I am in remission and wanted to cut down on some of the supplements I was taking.

If you want to take a fiber you may want to look into Heather's Tummy Fiber. (you can check out her website) I began taking that about a year ago and believe it has really helped me a lot. I don't take the large dose they recommend. I began with 1/4 teas. morning and now take 1 teas.

Everyone is different and this may not work for you, but I think it is much easier on your tummy than psyllium.

Nancy

[suzieq]

Hi Nancy,

Thank you for responding. I'm taking budesonide, it's been 2 weeks and so far no relief. I should add that I had 1 1/2 days of no BM's then the watery D started again with a vegenance. I stopped taking Colestipol with the budesonide, I don't have enough and I currently do not have a GI Dr and have to find a new primary care, I recently moved to SC from NC and have different insurance. I have enough budesonide for another 3 weeks @ 9 mg a day, so I need to find a primary care and GI Dr. asap. There's an online pharmacy I can get budesonide from without a prescription, which one is it? Is it All Day Chemist? I follow a low fodmap. gf, df, ef and cf diet and I'm continuing with the L-Glutamine for now. Thank you for telling me about Heather's Tummy Fiber, I will look into it. I haven't taken psyllium since this flare started. I have lost about 10 lbs, I'm holding at 98 lbs., I'm 5'6". I check in with my nutritionist every week and whenever she wants me to try psyllium again, I'll tell her about Heather's Tummy Fiber and give it a try.

Thanks again,

Susanne

[tex]

Is it All Day Chemist?

Yes.

Tex

[nancyl]

Susanne,
A few months ago I had a problem with constipation, which I have only had twice since being diagnosed. My GI sent me to a physical therapist who's specialty is the colon. She would do gentle massages, release scar tissue, etc. I learned so much about the colon from her even the correct way to go to the bathroom. She is amazing. Anyways, she told me that Heather's Tummy Fiber is the only thing she would recommend. It works for both C and D. I know it may not be for everyone, but I can honestly say it has worked for me.

Nancy

[dolson]

Hi y'all, I went off the Special Carbohydrate Diet, and WOW, I got into trouble. I simply refuse to go the med route and will only go the diet route. My bathroom became my home. Lived on the John! I am back on the SCD diet and hope I do better, even though the bm's were soft on the SCD diet. I am tired and exhausted. My energy is way down. My husband and I are going to Peru this Sunday for two weeks and I am scared to death as to diet. Any suggestions y'all? Thanks, Dorothy

[Gabes-Apg]

why are you so against meds?.

If you want to enjoy the trip I would encourage you to consider meds for the trip, and when you return then focus on calm patient healing process

[brandy]

For a once in a lifetime trip, if not in remission, consider the Pepto protocol, budesonide (Entocort), or cholestyramine (Questran)

or in lieu of meds consider staying home.

Diet takes a calm, patient, healing process plus time.

[dolson]

Gabes, you've gotten me angry!!!! Don't you dare tell me what to take, what not to take. Diabetics do not take steroids. PERIOD!!!!!!!! It's raises diabetic's blood sugar to extreme levels!! Who died and left you Queen? You are not a doctor, so quit acting like one. I'm a RN and have more medical knowledge than you'll ever have. Stop telling me what to do.

I'm solely responsible for my health, so leave it alone. If I choose to take meds or not take meds, that's MY CHOICE!

[tex]

Hi Dorothy,

Geez, I hate this job sometimes, but as the site administrator, it's my responsibility to try to maintain some semblance of civility here. So I find it necessary to point out that you've violated the terms of service by insulting and attacking another member who was just trying to help you to get your MC to remission. I believe that most members would agree that what Gabes has posted was not intended to be malicious or confrontational, she merely stated what was on everyone's mind. Perhaps it was not a response you wanted to see, but it doesn't appear to be confrontational. Sometimes a little "tough love" helps, but obviously that can backfire if it's not interpreted as intended.

Apparently we misinterpreted your reasons for posting here. Silly us, we assumed that by posting here, you came here to seek help in controlling your MC. But you must have had other reasons, which still probably would have been OK. But it's not OK to insult and disparage other members. Besides myself, Gabes was one of the very few members who reached out to try to help you. Your response to her makes me wonder if you actually want any help. Over the years, we've had many RNs to join the forum, and they've all been gracious, pleasant individuals who were glad to find treatment suggestions that actually worked in most cases for controlling MC, just like most other members. So I'm sure I'm misunderstanding your motives, but nevertheless, if you wish to continue your membership and participation here, you'll find it necessary to follow the rules.

Yes, we're not doctors (at least most of us are not — there are at least 5 or 6 MDs among the members). We came here to share experiences and ideas because we couldn't get resolution of our symptoms by following our doctors' advice. We offer suggestions and information based on what has worked for us and for most people, in most situations. It's up to each individual to choose what treatment options they will follow (if any). If someone has special limitations because of another disease (or diseases), it's up to them to coordinate the treatments. It's not incumbent upon us to base our recommendations on your complete health record. Most doctors only consider the disease that they are treating at the moment, so there's no reason why we should be held to a higher standard. We have members from all over the world. Customs and colloquialisms are different in various parts of the world. It's not OK to fly into a rage and attack another member just because you may have misinterpreted their motives or their syntax when they responded to you.

Stress is one of the main triggers for MC. None of us needs additional stress. Consequently, I feel that it is only prudent to try to keep stress levels as low as possible on a forum intended to be helpful for controlling MC. Therefore personal attacks will not be tolerated. It's OK to disagree with someone. It's not OK to launch a personal attack against them. If you find our rules and suggestions by other members to be confusing or upsetting, then either ask for an explanation or respectfully tell us why your opinion differs from ours so that we can all be on the same page. I hope that you can accept this post in the spirit in which it was intended.

Tex

[Gabes-Apg]

I am not going to apologise for my question/response to you.
I wasn't telling you to take Steroids. I was asking why you were against meds.
There are many other medication options for MC other than Steroids.

In fact, a few medical professionals here have had great success with the bile binder approach and /or antihistamine approach.

If and when you are open to these suggestions I am happy to post links to these discussions.
Otherwise I wish you happy healing.

[dolson]

When I get back from our vacation to Peru, I'll ask about these other options for MC. Thanks for contacting me. Warm Regards, Dorothy