colonoscopy and questions

Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.

Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh

Post Reply
constantd
Little Blue Penguin
Little Blue Penguin
Posts: 30
Joined: Mon Feb 10, 2014 1:05 pm

colonoscopy and questions

Post by constantd »

Just a quick update: I had my colonoscopy and upper endoscopy yesterday. Unfortunately the prep really ruined my guts (as to be expected). Usually after my colonoscopies I have a few days where I am feeling better but this time the diarrhea has only continued. Gah!! But I have a couple of questions: when i asked how everything looked the doc said I had nodules in my colon. The report that he sent home with me as far as aftercare instructions go stated that I had nodules in my sigmoid, transverse, and descending colon. Of course this is freaking me out because I've never had those before and my first thought goes immediately to cancer. Has anyone ever had this before?? My gut tells me that they are probably centers of concentrated lymphocytes but only the biopsy results will let us know. So for now it is a waiting game.

Unfortunately my Doc is really gung-ho about stupid Imuran. He stated that if my upper endoscopy biopsies still show lymphocytes as well that this is the route I should go. I even came to the procedure armed with an article about the updated treatment of MC (mainly, that long term budesonide is not the devil). He doesn't agree and acted like I was crazy to want to be on Budesonide for longer than a couple of months. He also doesn't agree that having small bowel involvement is characteristic of MC. So I'm beginning to wonder if I need to find YET another new GI doc. I've just been through so many of them already.


Couple of other things. My PCP wanted to try me on Mirtazapine because of my crummy appetite and possible postpartum depression (although I think its just depression from MC and dealing with all of it). So I was on it for a few days, and holy crap that stuff makes you sleepy. Yes it helped my appetite but I could barely stay awake because it is such a strong antihistamine. On the other hand I felt like maybe it helped my tummy a bit too so who knows. BUt after researching mirtazipine (aka Remeron) I discovered that it increases the amount of TNF alpha in our system - and this is probably the last thing we need with MC. However, SSRI's are contraindicated and so those are out of the picture. I'm not sure any antidepressants are really ok with this disease. Grrrrr. Wellbutrin seems to have an ok track record but apparently that drug can cause weight loss and that is the last thing I need. Has anyone else been on Remeron and done ok? Not been so sleepy on it? I mean, I could barely function and didn't really feel human. I have to take care of my infant so that's not an option.

And interestingly enough one of the articles that I read claimed that MC had something to do with an increase in IL -17 and that a new drug that is being tested on Crohns patients (of course) could potentially be very useful for MC. Tex do you know anything about this? The drug is called Vidofludimus and it is still in trials over in Europe. It sounds promising but I know better than to get my hopes up.

So unfortunately I am still feeling pretty sick and fatigued. I have been really strict about my diet and taking the appropriate supplements. I take my Vit D, magnesium spray, and sublingual B12. And I am GF, DF, SF, corn free, alchohol free, caffeine free, and almost entirely grain free and yet here I am. My naturopath did lots of bloodwork and luckily everything came back normal. My Vitamin D level was at 60 with me just using my 5,000 IU a day supplement so that's good. I could probably even increase my D supp to 10,000 and be fine.

I will keep you all updated on my biopsy results. Fingers crossed that the nodules aren't something scary!!
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

You are still relatively young, and nodular lymphoid hyperplasia is somewhat common in younger people, and sometimes it carries over into adulthood. While it's not a particularly common condition, it's not uncommon, either. Below are some links to old discussions about other members here who have been diagnosed with it.

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=9880

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=11520

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=14026


This is just my personal opinion, but IMO any GI specialist who pushes Imuran as the first line of treatment for MC most definitely does not have the best interests of his patients at heart. Imuran should be considered as one of the last lines of treatment for MC. Basically that kind of treatment (immune system suppression) will get most patients out of the specialist's hair, but it does so at a not inconsiderable risk to the patient's long-term health. At your relatively young age, that strikes me as a rather treacherous path to follow. I would run, not walk, to find another gastroenterologist. But remember, that's just my opinion — I'm not a medical professional. Your doc seems to know his stuff, but he has a rather convoluted attitude about the use of drugs to treat MC. You must live in an area that attracts GI specialists with unusually Draconian ideas about treating MC. :lol:

I'm researching the IL-17 issue for my next book, but it's too soon to draw any firm conclusions about the possible usefulness for treating MC.

It's not likely that the nodules are anything to be concerned about. Relax and enjoy your weekend.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
User avatar
T
Adélie Penguin
Adélie Penguin
Posts: 234
Joined: Sun Nov 30, 2014 10:09 am
Location: OHIO

Post by T »

constantd

You didn't mention what dose or when you are taking the Mirtazapine.My psy.told me that these drugs work on certain sensors in your brain and you have some of the same sensors in your gut so your gut may react.
I started on Mirtazapine 15 MG ODT (still to much anxiety) so my psy. put me on 30MG (affected my gut) so I had to give in to his original plan
Mirtazapine 15MG and Clonazepam .5MG (controlled substance) both taken before bedtime and both in dissolving tablet.
The first week I was sleeping in later but my body adjusted to it and I am gaining 3 pounds A month (much needed).
So if you are taking the Mirtazapine during the day that would be the problem because it does make you very sleepy.
I tried Wellbutrin and Venlafaxine quite A while back but both made me very sick but now I suspect my NP started me on to high of A dose
so she sent me to A psy. because she didn't feel comfortable refilling the Clonazepam she started me on (the main controlling hosp. group
didn't want their PCP to prescribe any controlled substance) liability?
Terry
constantd
Little Blue Penguin
Little Blue Penguin
Posts: 30
Joined: Mon Feb 10, 2014 1:05 pm

Post by constantd »

Thank you for your quick reply Tex

The only thing that is a bit disturbing is when you search the medical articles on LNH (lymphoid nodular hyperplasia) of course they often say that there is a link to GI lymphoma. So now I've just got myself worked up on another issue. The stress surrounding all of this is just amplifying my symptoms.

I think my GI doc just doesn't get it. He put me on a 6 week course of budesonide back in January where I was only on 9 mg for 2 weeks, then 6 mg for 2 weeks, 3 mg for 2 weeks. Obviously this barely did anything. I had about a week or two where I was actually feeling better but as soon as I taper down to 3 mg things return. I went on another course (slightly longer) once my symptoms returned and same thing happened. So it seems that the budesonide helps symptomatically but the problem lies in the short courses that he is prescribing. In his mind he thinks that it's not working since I begin to show symptoms again once I drop down to 3 mg. I'm just so sick of it all. I've been sick for way too long. I know that diet is important and I have been GF for 10 years now. Unfortunately I've developed lots of additional food sensitivities and I ultimately need a medication to even function. I can't afford to wait it out for my food changes to kick in because of the massive amount of weight I have lost and the fact that I am seriously underweight.

So I obviously need a new GI doc. Does ANYBODY know of anyone in Oregon or Washington state that is good?? I know someone has listed a naturopath but they probably aren't going to be on board with prescribing a longer course of budesonide. My husband has claimed that maybe we need to fly across the freaking country to see the one GI specialist who knows what the hell they are doing with MC. This has all just been so overwhelming and draining both mentally and physically (and emotionally). The stress of having a new child WHILE being extremely sick is just compounding the situation. At this point I will do anything to feel better, get my appetite back, and be able to live like a normal person. If I have to go on Imuran I will, but I just feel like the budesonide would be a better option, at least according to what others have experienced here.

Thanks for listening -
Katie
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Katie,

You may have already checked these out. We have only a single allopathic GI specialist on our list in the PNW:

Dr. Duane Webb
Olympic Medical Physicians Specialty Clinic - Sequim
840 N. 5th Avenue, Suite 1500
Sequim, WA 98382
(360) 582-2840

http://www.olympicmedical.org/default.a ... cianID=233

And we have a couple of listings in the Naturopathic and Holistic category.

Dr. Steven Sandburg-Lewis
SIBO Center for Digestive Health at NCNM
3025 SW Corbett Avenue
Portland, OR 97201

(503) 552-1931

http://sibocenter.com/

and

Dr. Noel Peterson
320 Oswego Pointe Dr.
Lake Oswego, Or 97034
USA
(503) 636-2734

http://www.getprolo.com/prolotherapy_pe ... oswego.htm

In a previous post in another thread I've already given you the link to a medical research article demonstrating the safety of long-term use of budesonide. Naturopathic practitioners would probably be open to accepting that article if you need/want to use budesonide over the long-term.

I hope this is helpful.

You're very welcome,
Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
constantd
Little Blue Penguin
Little Blue Penguin
Posts: 30
Joined: Mon Feb 10, 2014 1:05 pm

Post by constantd »

Thank you for the Dr. info Tex, I will see what approach my GI doc wants to take once I get the biopsy results back. I have a lot of budesonide as well as refills so this morning I personally put myself back on 9 mg, along with some immodium. Even if he declares that he wants to start me on Imuran I am going to need budesonide in the meantime, so I might as well get started on something. I was actually starting to feel a little better pre-colonoscopy and endoscopy but then the prep set me way back. So frustrating. I will probably end up with another Dr. though, considering that this guy thinks budesonide is the devil. I even brought the articles to show him to my appointment. I mean, how much more clear do I have to make things for him?

And Terry, thank you for the input. Yes, I was taking 15 mg of Mirtazapine at bedtime and yet I was still sedated and drowsy almost the entire next day. Like I said, it helped with the appetite but that was about it. Although now my appetite is crap again and I'm not sure how to stimulate it so I may have to start taking it again. My PCP asked me if I had ever considered smoking cannabis and I was like "wow, really?" I guess I do live in Oregon so that is legal now for everyone. I'd rather not have to get high but at this point I am in crisis mode so my motto is "whatever it takes."

Tex what is your take on Mirtazapine? As far as it increasing the levels of TNF alpha? I'm assuming that TNF alpha plays some sort of role in the inflammatory cytokine response that we see with MC. I know I am dealing with some depression but honestly I think it all stems from this damn disease and just getting so down on myself and feeling guilty like I can't participate in life. Everytime I start to feel better something happens (i.e. colonoscopy or my budesonide runs out) and then I'm back at square one. So frustrating.

Once again, thanks for listening
User avatar
Gabes-Apg
Emperor Penguin
Emperor Penguin
Posts: 8332
Joined: Mon Dec 21, 2009 3:12 pm
Location: Hunter Valley NSW Australia

Post by Gabes-Apg »

Katie
not sure if this is compatible with breast feeding etc but one medication approach that has worked ok for some is Elavil, it is an anti depressant, in low doses it can also calm the gut and slow motility

this might be something to investigate/consider while you work through current challenges. In low dose, it is not addictive and maybe it can provide a bit of a protection while your body recoups from the past couple of months.

there are also tonnes of podcasts (free) and audiobooks that you can use to help with unsettlement/anxiety. you can play them while you are cooking up meals, doing chores, spending time with your bubby. even things like a mum and bub yoga dvd 15 minutes a day would be beneficial..
The mental and emotional aspects are just as important as the eating plan and supplements... easier said than done I know albeit just as important

In all the tests done by your naturopath - did you she check your zinc level? also your iodine level? both of these can be depleted during pregnancy and be contributing to the current unsettlement/issues
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

I can't remember your history if you've been on budesonide or want to try it for the first time. Some of our members have been able to get their PCP to renew the budesonide prescription. Six weeks is not enough time on budesonide. I think the mfg recommends 3 months and the board finds a bit longer with long slow taper is better....like 4.5 months, 5 or 6 months.

I started writing this post yesterday then tweeking it today. You might bring the study to your PCP and tell him you were on it 6 weeks and responded to it. Tell him GI doc pushing Imuran and you don't want Imuran due to risks. Until you get new GI doc PCP might work with you. The PCPs get the risk of Imuran.

Long term it sounds like you need a new GI doc.

In the short term sometimes you can get the GI doc's nurse to act as your advocate. You can call and ask the nurse to give you a call and tell the nurse that you've been talking the the GI doc about budesonide and he brought up imuran. Mention to the nurse that you are a new Mom and talked things over with your husband and that as a young person you are not willing to take the cancer risk that imuran has. See if she can revisit the budesonide with you doc over the phone.

http://www.fda.gov/Drugs/DrugSafety/ucm250913.htm
http://www.ncbi.nlm.nih.gov/pubmed/23514635

It is rare that Imuran and the anti TNF drugs are prescribed for MC. Since I've been on the forum I think only two members have used it and they were elderly.
brandy
King Penguin
King Penguin
Posts: 2909
Joined: Sun Oct 16, 2011 9:54 am
Location: Florida

Post by brandy »

Katie,

Sorry you are getting jerked around by the GI docs. Budesonide is prescribed very routinely for MC.

I was heavily pressed by friends to fly to Mayo in MN for treatment. This seemed ridiculous since there are 250 GI docs within a 15 mile drive that take my United Health Care insurance. If you have to make appointments with two more WA/OR GI docs. One immediate then another appmt with another one 4 weeks out. If next doc is a jerk move onto GI doc #4. This is ultimately what I did to get my friends off my back and relieve the stress.
User avatar
tex
Site Admin
Site Admin
Posts: 35070
Joined: Tue May 24, 2005 9:00 am
Location: Central Texas

Post by tex »

Katie,

I'm not familiar with mirtazapine, but I would point out that when I had the magnesium deficiency last spring, not only did I lose my appetite, but I couldn't even force myself to do more than to nibble on a little food when the deficiency became severe. I note that loss of appetite is listed as an early sign of magnesium deficiency.

Also, the low doses of Elavil that Gabes metioned are in the 10–15 mg range (not the 50—100 mg range normally prescribed to treat depression). At the higher levels it's highly addictive.

And :iagree: with Brandy about the possibility that your PCP might be more helpful than your GI specialist on the budesonide issue. And I also agree that Imuran and the anti-TNF meds are not commonly prescribed to treat MC.

Tex
:cowboy:

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
constantd
Little Blue Penguin
Little Blue Penguin
Posts: 30
Joined: Mon Feb 10, 2014 1:05 pm

Post by constantd »

Thank you everyone for the input and insights. Gabes, unfortunately my naturopath did not check my zinc and iodine levels - just my vitamin D. I will have to bring this up. And as far as breastfeeding goes, we are pretty much down to only 2 sessions a day and I doubt that she even gets that much so meds aren't really a worry for me as far as getting into breastmilk. I will ask my PCP about Elavil.

Brandy thank you for the support and words of encouragement. I have taken Budesonide before but only for short periods of time (6 weeks at most) and it definitely helps while I am on the higher doses. This last time I tapered down to 3 mg every other day and then started having symptoms again. Dang it!! So apparently I need to stop the Budesonide roller coaster and just stay on it for a longer period of time - which is where I run into problems with trying to find a Dr. to get on board with this. And trust me, I have been doing the diet changes for a while now. GF for > 10 years. DF and SF for approx 4 months, and corn free/oat free for about 2 since getting my enterolab results. Unfortunately I reacted to EVERYTHING on the enterolab testing which is making this process so much harder for me. I am having trouble with cutting everything out so I still occasionally eat rice and pork, beef, and chicken. I would love to be able to control this naturally with just food but at this point my life is in shambles and my energy/weight is getting precariously low so I have to go the drug route. It's all just so overwhelming and I am dealing with a lot of anger/sadness, etc. It doesn't help that I am so young as I know I will be dealing with this disease for a LONG time and I even get fearful that it will be the end of me. Sigh. This disease really does SUCK.

And Tex yes I agree about the magnesium. I have the spray type but my legs just keep aching no matter how much I spray on. I am afraid to take the oral stuff I have for fear of making the D worse. I was getting IV infusions but they ended up costing too much so had to cut those out.

Once again thank you everyone for the support. This forum is so helpful.
Post Reply

Return to “Main Message Board”