Share Facebook
Crohn's Disease Forum » General IBD Discussion » To begin taking medication or not, life of a mild case of CD


09-26-2017, 03:36 PM   #1
miragz10
 
Join Date: Sep 2017
Location: philadelpha, Pennsylvania
To begin taking medication or not, life of a mild case of CD

Newbie here, so I was diagnosed with Crohn's in 2010 after experiencing awful fatigue, weight loss, debilitating stomach pains, etc, etc. Now 7 years later, I've yet to take any real medication (with the exception of Lialda the first year). As I've amazingly never encountered anyone else with CD, I am unsure of what to think of my symptoms. The past 7 years essentially the only symptom I've really had is diarrhea on a daily basis, typically 2-3 times per day. I'm very physically fit, attempt (poorly) to eat healthy, my weight is stable (6'0", ~170lbs), and I've had no medical complications what so ever. Every so often (3-4 times a year) I have flare (or what I perceive to be a flare) and experience some fatigue, though I can push through it fairly easily, increased trips to the bathroom, mild gut pains, and general loss of appetite. This symptoms generally last no more than a week and then I am back to normal, like I legitimately have no other issues besides the diarrhea. From what I can gather, and reading through my most recent bloodwork (DPT student), I have elevated inflammatory markers and low iron. I know inflammation is essentially a silent menace, but besides that, meh? I went to a new GI and he said he will likely put me on medication due to the inflammatory markers, but wants a colonoscopy to get a better idea of what is going on (I've had 2 previously). Based on this information, what do you all think of my seemingly very mild case of Crohn's, has anyone had similar experiences? And would you choose to opt-in on medication when you are really having next to no issues in life, and risk the possibility of side effects that may reduce QoL? Anyone who makes it this far, I appreciate the read!
09-26-2017, 04:54 PM   #2
finne013
 
Join Date: Sep 2017
Location: Temecula, California
Hello! I am also newly diagnosed with Crohn's. I was diagnosed in March 2017. I had to have a colonoscopy as well and as of right now I am more of a mild case as well. I have the same symptoms as you described. My GI doctor got me on Pentasa which I absolutely hated! I had a really bad reaction to it, the biggest one being hair loss. My hair thinned out beyond belief. I also had mood swings. My doctor switched me to a different medication but I have delayed taking it as I am scared what the side effects of this new one might be. I have found that dairy really affects me which I didn't discover until I tried going without it for a few months. Maybe try that. I also have to take vitamin D supplements since I am low on it. I am going to try finding some homeopathic ways to deal with this. Good luck!
09-26-2017, 06:41 PM   #3
miragz10
 
Join Date: Sep 2017
Location: philadelpha, Pennsylvania
Exactly what I am concerned with. I was prescribed Humira a few years ago, but it just sat in my fridge and I never took it! If you're looking for a more natural way to go, I've been taking probiotics (saccharomyces boulardii) for many years and I attribute that to much of my success (along with exercise). There's not a lot of HQ evidence surrounding probiotics yet but the specific strain I mentioned has been tested in at least one clinical study with success. If you choose this route, ensure your new medication isn't one of the "mabs" as they are immunosuppressants and combined with live bacteria may lead to fungal infections. Good luck to you as well!
09-26-2017, 06:57 PM   #4
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Welcome. I would rather be on some type of medication personally. I an glad you are having a colonoscopy. Let us know how you are.
09-27-2017, 06:11 AM   #5
shamrock15
Forum Monitor
 
Join Date: Apr 2011
Location: ottawa, Ontario

My Support Groups:
If your GI has prescribed humira, your crohn's likely isn't quite as mild as you would suspect. 3-4 flares a year to me does not really sound like mild. Crohn's can do a lot of damage to you without you feeling it right away.

I get the idea of not liking side effects. I have lost a lot of hair, I do have some skin issues. However, I have also had 6 surgeries to remove parts of my bowel ( a total of well over 4 feet), have had a temporary ostomy, have permanent damage to my elbows and knees all because of crohn's. Have a good discussion with your doctors before trying to go without meds. My frequency of surgery was increasing before remicade and was down to almost every two years with more on the way. In a decade with remicade I haven't even had one flare. It is a life changer for me and for many who use it.

I have no doubt that at some point we will find that bacteria have a huge role to play, and if you have a combination that is working well for you I do feel very happy for you. Keep up your monitoring of your disease, and while I do understand your reluctance to medication, don't let it stop you from getting the help you may require. Prescriptions can be changed pretty easily, but bowel surgery is permanent.
09-27-2017, 06:11 AM   #6
shamrock15
Forum Monitor
 
Join Date: Apr 2011
Location: ottawa, Ontario

My Support Groups:
If your GI has prescribed humira, your crohn's likely isn't quite as mild as you would suspect. 3-4 flares a year to me does not really sound like mild. Crohn's can do a lot of damage to you without you feeling it right away.

I get the idea of not liking side effects. I have lost a lot of hair, I do have some skin issues. However, I have also had 6 surgeries to remove parts of my bowel ( a total of well over 4 feet), have had a temporary ostomy, have permanent damage to my elbows and knees all because of crohn's. Have a good discussion with your doctors before trying to go without meds. My frequency of surgery was increasing before remicade and was down to almost every two years with more on the way. In a decade with remicade I haven't even had one flare. It is a life changer for me and for many who use it.

I have no doubt that at some point we will find that bacteria have a huge role to play, and if you have a combination that is working well for you I do feel very happy for you. Keep up your monitoring of your disease, and while I do understand your reluctance to medication, don't let it stop you from getting the help you may require. Prescriptions can be changed pretty easily, but bowel surgery is permanent.
09-27-2017, 07:14 AM   #7
ronroush7
Forum Monitor
 
ronroush7's Avatar
 
Join Date: Oct 2013
Location: vienna, Virginia

My Support Groups:
Agree

09-27-2017, 10:39 AM   #8
Bufford
Senior Member
 
Join Date: Dec 2015
Location: Northwestern Ontario

My Support Groups:
There are two camps here, and both are good advice. However I believe in going slow, medications have their own risks and so far there is no known cure for Crohn's. I have been on several including the antibiotics Cipro, Flagyl, Pred, Aza and biologics the Remicade. The side effects were the deciding factor and I had to get off of them all at some point. Remicade simply did not work and I had a very bad reaction to it.
My take on these medications are that they effect everyone differently, for some they do wonders, for others not so much. In most cases though they are good for knocking down a flare. During a flare these meds quite well, but between flares I am a believer in diet, lifestyle and stress reduction. Environment may also come into play as I try to keep allergens to a minimum by keeping the house clean and using a dehumidifier to ward off allergens including molds.
There are also many therapies and supplements one can take. I suggest reading through discussions on this site and others on the subject and ask you doctor questions.
I had major surgery in 2001 that left me with half a colon, less small bowel and a permanent stoma. Since that time I have avoided further surgery.
09-27-2017, 10:52 AM   #9
scottsma
Senior Member
 
scottsma's Avatar
 
Join Date: Jan 2012
Location: Tynemouth, United Kingdom

My Support Groups:
I opted out of meds over 2 yrs ago.I think it has to be a personal choice and also severity is a big consideration.I have the occasional flare and I often feel out of sorts,but like you I am fit (for my age) and I'm also conscious of diet.I trust myself to know when I need help and most probably will in the future,but until then I will try to look after myself.But the crohnie mantra is "What works for some does nothing for others" and I know many on the forum rely on medication just to get through life as best they can.
Reply

Crohn's Disease Forum » General IBD Discussion » To begin taking medication or not, life of a mild case of CD
Thread Tools


All times are GMT -5. The time now is 07:37 PM.
Copyright 2006-2017 Crohnsforum.com