The toilet and I have a love/hate relationship..

Hi. My name is Sara, I am 31 yrs old and my life has been completely changed by Crohns.

My GI symptoms became so severe they nearly killed me in November of 2011. I was bed-ridden or on the toilet with the worst spastic diarrhea and vomiting for 3 weeks straight, not able to eat or drink anything other than chicken broth. And by week 2, I was scared to death to eat since it automatically put me in the bathroom. I went to my rheumatologist, since I trust him more than my internist, to see what could be done. He referred me to a gastroenterologist, who saw me the same day.

Looking back, I wish I had done some research, he was awful! He had me do a colonoscopy first, not taking into consideration what my body had been through over the last month....by the time I had to clear out to take pictures, I was unable to completely, since I was having trouble anyway. Same thing happened with the barium x-ray, I had to not eat for 4 days to prep so I would clear out completely! At least the x-ray could take a test picture to show if I was ready or not, instead of making me go through a colonoscopy that was pointless. Neither test was definitive, so the Dr wrote it off as nothing more to look into, and I never heard from him again.


My whole life I have had severe constipation. I never thought anything of it, in fact, that was my "normal"! They now believe it was the beginning stages of crohns disease and somehow the joint issues and fibromyalgia was my body's way of externalizing my disease.

6 years prior, I have been off and on meds for what we now realize were the additional Crohns symptoms. My rheumatologist could only treat my joint inflammation and pain, not able to find a diagnosis, he called it erythema nodosum and fibromyalgia. So all of the biologics used to treat crohns, I have taken at some point, and am familiar with. I have also been through the HELL of having insurance approve the cost of these drugs, and have been fortunate enough to have a rheumatologist that cares and has gone so far as to pay for my meds/ have his office supply my meds for a short time between jobs! Not many doctors like that these days...

He is now treating me for crohns disease, I am on Humira, once a week, along with zonisimide, savella, topirimate, prednisone, tramadol, and hydrocodone. The Humira definitely helps, but there are still days I can't be too far from a bathroom...I try to live life as close to normal as one can when living with crohns. One day at a time.

OMG
So do i!!!
Most women have a partner-but at least Lennie the lav doesnt answer back and hes always there no matter what day or time it is!!!!

Hi Sara, welcome to the forum. It sounds like you've been through a lot, poor thing. Even in the best of circumstances, colonoscopy prep isn't fun, but it sounds like your experience was terrible. It sounds like you're doing better now but not in remission? Are you going to try to find a different (better) GI? It must be really hard to treat your illness just through a rheumatologist. We do have a section on the forum for doctor reviews, so you might want to have a look through there and see if you can find a good GI in your area. Here's the link to the Tennessee doctors:
http://www.crohnsforum.com/doctor/us/tn/

I hope that helps, and again, welcome!

I'm sorry that you have been through so much. I just started imuran and hope it will help me. Hope you get well soon.

I have an appt with a second GI dr on 3/14/13...will let you know what I am able to learn with his knowledge.

I am currently battling the most severe flare since the beginning, this one having spasmodic diarrhea consisting of ALL MUCUS and feelings of not making it to the toilet...I hope this doesn't mean the Humira is beginning to lose its effectiveness. If so, I will see about switching to another biologic. For the 6 years before all of my GI issues, I was on several different rheumatoid meds in hopes to control my auto-immune symptoms. I have used almost all of the injectable meds on the market today in the same drug class with Humira.

I am relieved to know there are others in this life, going through the same things with this disease I am. Thank you!!

Hi i am so glad you finally got a diagnosis, i have been through similar to you i was even diagnosed with fibromyalgia and chronic fatigue syndrome at one point because they couldnt find anything else, i've been through the its in your head dx too. i'm still waiting on a firm dx but they are looking into my small bowel for crohns or they say it might be my colon thats too slow as like you i have constipation sometimes going for 2 weeks without going to bathroom or the opposite and i cant stop!
How are you feeling in yourself now? xx

I have the most issues with constipation, sometimes not having a bm for 1-2 weeks as well, but this has been the case my whole life. That was "normal" for me, up until the diarrhea for 3 weeks straight began. That was when my rheumatologist and I realized the autoimmune issues were only a small part of the bigger picture.

My colonoscopy was inconclusive, I think partly because the GI dr was in a hurry to get me out! He should have stopped the whole thing and had it rescheduled as soon as he saw I wasn't able to fully evacuate my bowels. Plus he did this procedure as his FIRST step in my diagnosis, right after I had been through the trauma of 3 weeks straight with a spastic colon regardless of eating or not! I was so sick, I just wanted more than anything to feel better. Then he had me go through having a barium x-ray, and I was unable to completely clear out for it so I had to do the prep for 4 days instead of the normal 2!

As of the last week or so, I have had a flare up that has been the worst one yet since the initial bout of my digestive disease, having the spastic symptoms and feeling the need to go despite nothing coming, and what I have passed with this flare up has been 95% mucus. I have had the mucus since it all started, which sometimes will change in smell, color, and/or consistency.

I know I am one of the lucky ones so far, but from reading the others stories, I can only pray I can keep it from getting any worse...this is something I never imagined I would have to live with. I constantly do my research on the meds and I am prepared for what the next course of action should be since the Humira is beginning to lose its effectiveness...I guess we will give the simponi a shot next...

Thank God my sweet husband has been completely selfless and supportive throughout this, I don't know what I would have done without him.

Your thoughts? I have been on enbrel, humira, cimzia, and simponi as far as the biologics...took methotrexate for a short period of time during which my hair began falling out...I have been on almost everything known for crohns.