Hitting bottom (pun intended!)

[Firework]

hitting bottom (pun intended!)

Hi. I'm glad to have found a support group because I feel very alone right now.

I have IgG IgA ASCA positive crohns. I also have a metabolic/neuromuscular disease that complicates matters, it's often difficult to sort one from the other to figure out what is causing a problem.

I have esophageal dysphagia (from the neuromuscular disease) so things get stuck in my esophagus or I can't swallow sometimes. My small bowel thus far doesn't seem terribly affected by the crohns but has a rapid transit time (about 10-15 minutes). No clue why with that one. The biggest problem area for me is my stupid colon and rectum. This is where it's hard to figure out which disease causes which problem and how they affect each other.

I have colonic intussaception, rectocele, improper nerve sensation in the rectal vault, partial thickness rectal (and internal hemmerhoid) prolapse, a lot of swelling or tightness of the anal sphincter, my rectum isn't at the proper angle (the muscles have just given out a bit I think) and while I have lift, it's not as much as they would like to see, and the entire thing is set a little too low (probably also muscle related). When I do the defecography, I can't pass solid stool regardless of effort (one of the silver linings of having crohns, I often don't have to worry about that! wait long enough and I'm bound to "assplode."). What does come out is just the liquid they put in and it just kinda drizzles out instead of going in spurts like it's supposed to. They can see the stool come down and make its way around the intussaception eventually and then it just sits in the rectal vault and swirls around but doesn't go down and I don't feel any urge that anything is there. It eventually comes out small bits at a time 4-8 hours later or sometimes more.

I'm going in for a colonoscopy next week to check out all the current issues and see if they can figure out what is caused by which issue and how to fix it. Not looking forward to the jug of "golytely." It should be called "goExplosively" instead. And they should hand out one of those beer funneling helmets with the scripts.

I have been separated for almost a year and am currently slogging through the divorce process. I have children, which makes things more complicated. I'm terrified of loosing my insurance coverage when the divorce goes through and while I am currently in school, my ability to get employment right now is pretty much nonexistent. So I don't know what to expect from this process.

I don't have any friends or family (aside from my children, they are amazing). I don't have a safety net or a backup plan or really anything else to count on, and that terrifies me.

I joined today because I needed a place where I could ask questions and get understanding and hopefully answers. I needed a safe place where I could vent and feel like I wasn't just always complaining. I guess I just need support from somewhere, and this seemed like a really great place to get it.

 

[mikeyarmo]

Welcome to the forum Firework!

I am really sorry to hear about your current situation. It sounds like you are going through a pretty stressful period trying to sort everything in your life out. As Crohn's can affect the entire digestive tract (from mouth to anus) it is hard to really know which condition is responsible for each symptom. Hopefully the colonoscopy helps (even though I fully agree that it is not fun to prepare for!).

We are certainly here for you for questions and support. We understand what this disease is like and I hope you do feel that the forum is a safe place for you.

Good luck sorting through everything and remember we are always here for you!

 

[billyjoel]

Firework we are glad to have you here with us, welcome aboard!!!!

Also, I would be a fan of the golytely beer funnel helmet! Much easier than constantly having to refill a glass

 

[Firework]

They should at the very least make the jug a nice bright happy pattern or something. Or maybe give you one of those whacky straws that are also a pair of glasses. There's got to be a way to make the clean out process a little less daunting.

 

[David]

Hi Firework and welcome

Wow, I'm so sorry you're going through so much *hugs* to you buddy.

Would you be willing to share the name of the other disease you have? It might allow us to provide you more insight and support.

How long have you been diagnosed with Crohn's Disease? And what medications are you on?

You're a great writer. I know you said employment is an issue right now but you could always bring in a few bucks a day writing (let me know if you need pointed in the right direction).

I look forward to seeing you around the community

 

[Firework]

I would love to be pointed in the right direction as far as writing goes! I love writing and have a BA in foreign language. Language in general is my interest.

My disease is Mitochondrial disease. It's complicated to figure out what it affects because it affects every cell in your body. It's a disease that is a spectrum. One person can have the exact same dysfunction and causative mutation (mtDNA, mitochondrial DNA mutation) but have totally opposite symptoms as someone else with the exact same dysfunction and mtDNA mutation. So there is no guideline based on what your specific dysfunction is that can help you figure out what it will affect.

For instance, my son has chronic pseudo obstructions and very slow motility. He's tube fed and has an appendicostomy for antegrade enemas due to his lack of colonic motility. Since mtDNA mutations are a maternally inherited disorder, your mtDNA is a carbon copy of your mothers, her's is a carbon copy of her mothers, etc, we have the exact same genetic cause of our disease. Instead of my motility being too slow, my small bowel transit time is too fast. So in a sense, we have the opposite problem caused by the exact same genetic issue.

We do know that my muscles are affected (this is very global in mitochondrial disease because muscle uses mitochondria more than most other organs do. Gut, brain, liver, and heart are most affected in general because of their energy demands.). The actual muscle composition is altered because either a) the body adapts to having inefficient energy production by making more of one muscle fiber type vs another, or b) the lack of energy to "fund" the muscle causes the muscle to break down or dysfunction.

It can also affect the nerves. So the issue I have with the rectal vault could very easily be due to lack of appropriate innervation. I have peripheral neuropathy and a lack or appropriate sensation in most areas of my body, so it would be understandable that that specific issue would be related to my other sensory issues.

The question then becomes, was the rectocele formed because of a lack of proper emptying due to a combination of the lack of proper innervation (ergo, not emptying when it should) and the muscle weakness (the bulge was the path of least resistance), or is it tissue affected by the crohn's disease?

In order to figure out how to treat each facet, they have to figure out what is the cause. If it's because of the crohn's, they can leave it be to a greater extent and it can go away if the crohn's improves. If it's due primarily to the muscle issues, then it will not go away on its own and has to be fixed in a manner that is consistent with a neuromuscular dysfunction.

There is also the possibility that it's not just the bowel that is affected by the weakened musculature and they may have to tack up the bladder, kidneys, and uterus as well.

So at this point, it's a game of which came first, the chicken or the egg. In order to know how to fix it, we need to know the cause.

I have tried a few drugs. In the beginning they gave me an oral antibiotic that killed off all the flora in the gut (and was limited to the gut because of the sensitivity of my other organ systems) and replaced it with probiotics. This temporarily improved my bowel symptoms to a great degree, but everything returned shortly after. It is not something that can be repeated that often. They then tried clonidine, I'm not sure on what premise, but it had no effect. I have done several bouts of prednisone to great effect, but it is also a drug that they are not willing to continue indefinitely due to the potential side effects and effects on the rest of my disease process. I feel much better on prednisone though. I am not a candidate for the biologics because the immune system is affected in mitochondrial disease and the degree to which my body is affected by illness is much greater than someone who is otherwise healthy. So immuno-suppressants are not much of an option.

I guess basically, the issue we are having at this point in treating the crohns is that the normal treatment for it is contraindicated due to my underlying disease process. I am more than willing to try enteral nutrition (and much more willing because I am so familiar with it because my son has been on elemental EN his whole life), but they do not seem to think of this as a treatment. At this point eating is so miserable that I don't really care if I were tube fed the rest of my life so long as I had energy and nutrition and was not in constant pain. They just have not considered that as an appropriate treatment.

I do not see what other options I have though. I continue to loose weight and while it may not be as severe of a degree or even as severe of a disease process as many of you have gone through, it is greatly complicated because of my underlying disease. Where many can opt to wait and see what happens, the affects of the crohns and the inadequate nutrition affect the mitochondrial disease so I have less of a buffer.

So that leads to the question of whether it is appropriate to use more drastic treatment when it would not normally be indicated. Since the lack of nutrition so adversely affects the outcome of the mitochondrial disease, do we use more aggressive treatment of the crohns?

As far as the diagnosis of crohn's, that is also complicated. The fact that I am IgA AND IgG ASCA positive highly increases the likelihood. But there is also a lingering question of whether or not some of the intestinal issues could be related to things other than Crohn's. It is the underlying disease process imitating Crohn's or is it a combination of the two. To answer that question, they are relying heavily on the ASCA positive blood test because that should not be positive if it were otherwise just the mitochondrial disease presenting like Crohn's. There has also been some link to Mitochondrial disease and Crohn's, but it hasn't been widely studied. It seems to have a higher rate of occurrence in people with Mitochondrial disease. But then again, is that because the disease process can mimic crohn's or because the two are just more likely to occur concurrently.

So after that verbose response, yes, I have Crohn's but it's difficult to sort out what is caused by the Crohn's or if it is all caused by my disease, and if so, how does that change treatment. I believe that they are hoping the colonoscopy and potential biopsies will shed a little more light on this. Thus far my diagnosis has been a result of imaging studies (upper GI with small bowel follow through and defecography). They are hoping that the colonoscopy will shed a bit more light on what is caused by which.

Until now I have had little familiarity with Crohn's, so I am not sure what diagnosis is usually based on. I don't know how definitive the combination of ASCA testing and the imaging studies usually are. I know that the colonoscopy is generally the gold standard, but they already know there will be findings based on the imaging studies. I think the hope is that there will be findings that are more specific in some areas to distinguish between the two issues at hand.

 

[David]

A few things:

1. You mention you're not a candidate for biologics. I found this study that showcased excellent results with Infliximab (Remicade) in a patient with CD and mitochondrial dysfunction. I realize there's many forms of Mitochondrial Disease but thought I'd post that in case.

2. I also found this which discusses using stem cell therapy as a treatment for Mitochondrial Disease with excellent results. Stem cell therapy is also having fantastic results for people with Crohn's Disease. Maybe two birds with one stone here?

3. Have you ever had your vitamin B12 levels tested? If so, what was your level in the last test?

4. I will PM you about the writing.

 

[Swirl]

hey thanks for the tag.
I'm in the same situation with work.

I will suggest a consulting job which you can do from home. You have a BA in foreign language?!

From google search I read a foreign languages is a particularly valuable skill in a consulting job.
Consulting in pretty much anything. Help doctors or anyone provide consultation in a foreign language that they don't know.....
It can be fun.

I watch social steaming video at night (justin.tv) and this one guy does consulting as well as 2 other jobs from home. That's something i wish i can do but my grammar sucks. You write well!

Foreign language translation jobs
Teaching a foreign language too.

Well I'll be moving to Panama which is where i have family, and working there for foreigners is great. Don't have to worried about not being able to find work... and with family there.

And i hate to always suggest medical marijuana.... but its an option if u have access...lol

Just by typing in 'Mitochondrial disease marijuana' into google i see 'Cannabidiol Targets Mitochondria '. CBD in cannabis which is also important for crohns/colitis.
and there's a pdf link there on the first page by 'jneurosci' website.
The PDF is interesting!

Feel better!!!!!!