Mild-Moderate GI issues:
Medication:
- Asacol (oral Mesalamine) or Canasa (Mesalamine suppositories) is a very safe and often effective medicine. As always, it is important to see a knowledgable doctor who is up to date with recent studies of this medication because research is constantly changing and finding different effective and recommended doses.
- Prednisone is fairly safe when used for short periods of time and often effective to get into remission but it is not a long term solution. I know that I was on the max dose for a while; it did little to help and seriously messed with my mind (I would forget everything and would actually hallucinate at times).
Diet and Homeopathic options:
Like many autoimmune diseases, diet is
something that will greatly very from person to person. And though
the reason for diseases like U.C. are still unknown, some people find
that food allergies are a contributing factor for them. It is a good
idea to start an elimination diet with common food allergies like
wheat, gluten, egg, dairy and so forth, and always to give it weeks
or months to clear your system before reintroducing potential
allergens. Some people find that processed food, sugars, and/or raw
food can aggravate symptoms. There is no medical study that links
food or diet to UC, but many people swear by it. I know that I tried
everything listed above (and followed it religiously) and I spent a
lot of money on holistic doctors and their various tinxtures and
herbs but had no luck whatsoever, so don't feel guilty if it doesn't
work with you! Often people with more moderate-severe illness will
not be able to rely on solutions like diet or homeopathic remedies.
Personal Issues:
It is scary to be a young person in
their early 20s (which is strangely the onset for most people with
these issues) and told that you have a chronic illness, one that you
probably have never even heard of, and that you will have to be on
medication for the rest of you life. I used to think these types of
things only happened to really old sick people, but you are not
alone! It is very typical to be perfectly healthy and then start to
develop G.I. symptoms in your early 20s; you just feel isolated and
and weird because it is not something that most people have common
knowledge about or discuss over the diner table. It can also cause a
lot of personal concern for your health and social anxiety when you
are always looking for the bathroom in public situations. For so many
years I hid everything from everyone, but after finding that most
people really don't care, it is such a relief to be open about it.
How and what you want to share is a personal choice, but after years
of hiding, I felt like a weight was lifted when I decided that I was
no longer going to care what people thought of me, and it really is
easier to just say it how it is.
Moderate-Severe GI Issues:
things start to get really scary....
Medication:
- Remicade is a weekly (then monthly) infusion that you must get in a hospital-like setting where you are highly monitored because of the high allergy risk. Each infusion is about 6-10 hours through IV. It is almost guaranteed that you will develop an allergic reaction to this medicine at some point in your life because it is derived from mouse (as opposed to human) protein. It usually makes you very tired but can be incredibly effective for some people, it's just luck of the draw. It is important to understand the allergic reaction risks while undergoing treatment (I nearly died during my second infusion after going into anaphylactic shock which is unfortunate because it is the only medicine that actually worked for my UC symptoms).
- Humira is a bi-weekly injection, and in my opinion, the worst medicine on the planet. The injections are painful, make you insanely tired (in fact not functional for 3-5 days after treatment), require a home-health nurse, cause skin and mouth soars, and have serious risks like infection and death. Please understand the risk while taking this medication... I now struggle with another autoimmune disease, Lupus (which I developed from treatment), because of Humira.
Chemotherapy:
The most common form of Chemo is 6MP
(or Mercaptopurine). Effectiveness varies, requires a lot of weekly
blood work, causes fatigue, hair-loss, risk of infection, risk of
developing lymphoma, and risk of pancreatitis (which unfortunately
happened to me). This is pretty much the last line of defense (along
with Remicade and Humira), so I would strongly suggest looking at
the pros/cons of surgery before exhausting all your resources and
energy on these options. This works for some people, but is not a
life style I would recommended.
Clinical Trials:
There are a lot of clinical trials out
there (ask your doctor or look at research hospitals) that could
potentially work for you, but they are often only open at inopportune
times, often have placebo patients, have a lot of prerequisites, and
can take years (which unfortunately you most likely do not have if
you are desperate enough to look for them). Also, they may have
unseen risks. I know that one study happen to close a day before I
was able to join, which was actually a blessing because it ended up
causing a lot of brain damage and deaths in its patients.
Surgery
For some, the removal of part or all of
the large intestine is the only option. It is an extremely rough
series of surgeries and will probably take a year out of your life.
For most, the option of a J-pouch (recreation of the large intestine
from part of the small one) is available, allowing for normal
elimination of stool (although a bag will be necessary between
surgeries). Lifestyle for most after recovery is nearly normal and
much improved from before.
I wish I had considered surgery before
going through al lot of the brutal treatment stated earlier, but I
was so stubborn and would never let surgery be an option for me until
“the option” was taken from me. It's understandable... who would
ever want to go through surgery and live with an ostomy pouch?
It's a difficult decision, there is no
way around that. I know that on one hand, I am glad I did everything
possible because sometimes things really do work for some people and
I am also glad knowing that I gave it my all... but on the other
hand, it extended my suffering and put me in a very unhealthy state
going into surgery.
These surgeries are a huge and personal
life decision, but there are a few things I want you to consider in
your process. First, the healthier you go into the surgery, the
quicker your recovery will be and you are more likely to have a
better outcome. Also, the healthier you are, the more likely you will
be able to have the process done in two surgeries as appose to three.
Probably the most important part of
this whole process is the surgeon. Even if you have to pay every
penny out of pocket, this is something that you really want done
right and done by the best. The difference in a typical surgeon as opposed to a top qualified surgeon is a pouch failure rate of 8-10% as opposed to less than 1%. For me, that made all the difference in the
world. Do your research, find the best. For this surgery, experience
means everything. If in the LA area (or on the west coast for that
matter), Dr. Fleshner (located in Beverly Hills) is truly the best.
He may be a little brash, but his experience is unmatched, his work
is impeccable, and no other doctor in this field would recommend
anyone else.
Finally, the last thing to consider:
this too shall pass. I had an incredibly rough journey through this
whole process, but there will be a point when you look back at
everything and it will only be a memory. If asked after my first two
surgeries if I would do it again, I would probably have said that I
would rather die than ever go through anything like the last few
years. But here I am, only a week after my final surgery and I am
finally feeling “normal” again. For me, I had no choice in the
end, but the fact is that I did do it, it is done, and you can do it
too.
Of Special Concern
Pregnancy
It is completely possible to have
healthy children while suffering from these diseases. Although I was
very ill and my body was thrashed from the pregnancies, I had two
very beautiful daughters while on very high doses of Asacol. Although
possible, I do not recommend planning on having children during a
flare-up. For me (and like many), even though I was in temporary
remission, the hormones of the pregnancies put me in very severe
flare-ups. If pregnant or considering pregnancy, I recommend Dr.
Dubinsky (in West LA) who specializes in this area. Without her care,
I would have likely lost my babies or my life during the pregnancies.
Life with an Ostomy
It is no surprise that the personal
fear of having a pouch is probably the biggest deterrent from
surgery. I had it, and I will most definitely say that it was the
hardest thing I have ever had to deal with. Not only is it
frustrating to figure out, causes annoying skin problems, and limits
your wardrobe and diet, it is emotionally traumatic. I was a happily
married women (already at peace with never wearing a bikini again
after two kids) when I had my ostomy, but I still had a reallllly
hard time dealing with and accepting my new life. I honestly believed
that I could never be attractive again... but what a lie! The truth
is that you can have a completely normal life with one, and that any
partner worth dating/marrying is going to love you despite
superficial inconveniences. There is a website, “OstomySecrets.com”
(I know, how cheesy), that makes these wraps you can get... you can
wrap it around your stomach over your pouch and go about your day as
normal.
NOTE please reference my other blog to get a personal glimpse of life
struggling through all of this:
If you have any questions (particularly
if you are going through or considering surgery), please ask me...
I'm pretty open and have some personal experience that might help.
Blessings to you in your road to
recovery,
Laura
Ljkrimmel@gmail.com
