Newly Diagnosed - New to Forum

[SDizzle12]

Hey all - I've had GI issues for about 10 years now (I'll be 26 soon), but I was always told it was just IBS, and that I'd have to basically just "deal with it." What used to be just inconveniently urgent trips to the bathroom, has developed into a much worse situation for myself.
My mother developed Crohn's fairly late, not until the age of 49 - her sister had it her whole life, until having surgery, which effectively left her in permanent remission (not a symptom since).
I moved to Manhattan last Feb, and hadn't seen a new GI since. But after waking up with my first partial blockage in early August, I immediately found a great doctor in the Upper East Side and have been under his care since. It was he that insisted on an emergency CAT scan (to rule out appendicitis), and the colonoscopy that eventually firmly diagnosed me. Since then, we've been adding more and more medication to find a level that works for me (nothing so far). I am taking Asacol HD (3 pills, twice daily), Entocort (3 pills daily) 6MP (1.5 pills daily) and a myriad of vitamins and supplements. I eat extremely well, and exercise often. No significant improvement thusfar, but I tend to be a fairly optimistic person. Surgery is an option down the line, but not something I'm jumping to have.
Day to day, I still have major issues. Every part of my life, every decision I make, everything I do and the thought process involved is HEAVILY affected by my disease. I'm frustrated. I want to live my life and enjoy myself.

 

[Angrybird]

Hello and welcome to the forum

I am sorry to hear that the tum isn't settled yet for you. How long have you been on these meds? What symptoms do you still continue to get? Are you due to see your doc again soon to discuss how things are going for you? Also what vitamins are you on and in what form (tablet, injection etc?).

There is a lot of helpful info and support here for you hun so do have a good look around.

AB
xx

 

[annawato]

Welcome to the forum sdizzle, its extremely frustrating trying to find medications that work and unfortunately it can be a time of trial and error. Not that knowing that makes it easier to deal with. I think you're sensible not to rush into surgery to quickly as usually the crohn's just returns at the site of the resection although your aunt has not had this problem. I guess it depends on whether you are coping with you symptoms. The other thing to try or at least ask your GI about is the newer biologics like Infliximab and Humira. A lot of doctors advocate using these drugs straight up before the bowel gets too damaged by inflammation. Again it depends on the extent of your disease as they are very expensive.
The way you are feeling is perfectly normal. It is totally unfair to have a disease that affects everything in your life, worse, you dont necessarily look ill so people dont understand and worse still you encounter doctors who just tell you to deal with it or that its all in your head. I think most of us here have been where you are and have somehow just learnt to accept the rottenness of it all. Sorry this isn't more helpful. As Angrybird said there is heaps of info and stories from others on this site.Don't hesitate to post any questions or worries, someone will always try to help

 

[SarahBear]

Welcome to the forum!

I'm sorry you're having to go through this. It really is frustrating when it feels like you no longer control your own life.

How long have you been taking each medication? Keep in mind that they don't work right away - some can take months to fully kick in. You might want to take a look around the Treatment section of the forum to read about your medications and the experiences others had on them. You also might be interested in the Diet, Fitness, and Supplements section.

I hope things settle down for you soon and you can get your life back. :hug:

 

[SDizzle12]

I'm very new to forums in general, and the fact that I got responses almost immediately makes me 100% happy I decided to join. So let me start by saying thank you

Symptom wise, I vary very much day to day. My biggest issue that I face is what I call "inconvenient urgency." I've always used the bathroom more than most, and have even dealt with chronic diarrhea for a long time, all of which I can deal with. My problem is (for example) when I'm about to leave my apartment for my 30 min commute (by bus) and I have that impending emergency, and the thought of being trapped on the bus, or any vehicle for that matter, kills me. It makes the pain worse. I have to leave myself at least an additional 30-45 min in the morning to hopefully take care of my bathroom needs, however this is often futile. It's rare that I end up in an actual emergency, but for me the thought alone can be just as bad. I end up taking cabs (expensive) because I know that I'll be isolated for the shortest amount of time.

I'm a single 25 year old professional living in manhattan. My lifestyle is definitely a social one, and this of course has been affected. Something simple like going on a first date has become something difficult for me, as I am almost guaranteed to have some kind of issue while at dinner/drinks.

After my blockage in August, I had a bit of a wake up call - my logic was this: since it's autoimmune disease, if my body is in tip top shape, I will be better equipped to deal with it. From that point I made a lot of lifestyle changes. I felt that even if it doesn't help my symptoms, at the worst case I'll just be in better shape. Running, gym, yoga, gluten-free, dairy-free, while attempting to stay with a low-residue diet - not easy. Unfortunately, here I am still, not satisfied with my situation at all. I've since backed off the gluten-free, but will maintain dairy-free as I've always suspected a level of lactose intolerance. After I made these changes, I lost about 30 pounds in 2 or so months. I'm 6'1" and fairly broad/athletic, never what most would consider overweight at all, and I weighed a solid 208 without much fluctuation in July. As of today I'm a somewhat unstable 177, never beneath 176, as high as 183. I attribute the weight loss to my lifestyle changes and not so much the disease itself. I've also cut back on social drinking, not that I am a heavy drinker to begin with, but I definitely enjoy a great scotch occasionally.

I'm definitely in the early stages of treatment, having only been on the Asacol for maybe 2 months, the Entocort for maybe 1 month and the 6MP for 2-3 weeks. I really haven't had any marked improvement so far, and I am trying not to be discouraged. Again, I'm frustrated and I'm so happy to know that there is a community like this where I can seek advice.

On a somewhat controversial side note, until 23 I'd never tried marijuana, never had anything against it but just wasn't my thing. A friend of mine suggested it as a way to "settle my stomach." I tried it, and afterwards realized that I didn't have any stomach issues while feeling effects. I'm not sure if its the associated anxiety that is relieved, or the actual symptoms themselves. Either way, if I'm home, or out without any real responsibilities, I've adopted it as an acute treatment for my discomfort and urgency. It really does help, and I am absolutely an advocate for medicinal use (as well as overall legalization for unlimited reasons). I'm going to use it as supplemental acute treatment, but I do hope it becomes legalized so the social stigma can eventually fade.

 

[acheallova]

Hey sdizzle, welcome.
Another item that comes in handy is a journal documenting how you feel when you take your meds, if there is changes in color, frequency, urgency or consistency of stools, what you're eating ( that might make symptoms worse), temperature and just overall daily ambition/fatigue levels. It's also a great place to keep a list of questions for the doc. Hope your tummy gets settled. Best of luck and welcome again to the community! - hugs-

 

[annawato]

I was wondering if you had tried loperamide to slow the diahorrea down? i have a very overactive ileostomy and the doctors have me on 12 -16 tabs a day. Most people would only need one every 6 hours or so. The other thing the docs put me on to thicken the stools is metamucil which is an australian brand stool softener. Sounds counter intuitive to take a stool softener when you have D but as its a soluble fibre it soaks up excess liquid so that you have a more normal stool that moves more slowly thru the gut which allows more liquid to be absorbed. The other thing is the low residue diet - I was told you should only be on it for no longer than 3 months. Maybe you should be having more fibre and in particular soluble fibre like apple, oat bran etc. Heres a link that may help I havent read it all but you could also google soluble fibre to get a list of 'good for crohns' fibre.http://www.helpforibs.com/
I really hope one or both of these ideas helps you so that the disease is not controlling your life. Also if you search marijuana within the crohns forum you'll find lots of people who find it helpful. The latest newsletter highlighted marijuana as a treatment for IBD. All the best,

 

[annawato]

I just read more of that link and it seems pretty good talking about soluble fibre with links talking about the need to incorporate some insoluble fibre too and which ones are safer. Hope it helps - its worth a try, perhaps on the weekend when you are home if it doesn't work. loperamide should definitely help and diet changes should. Fingers crossed,
Anna
ps. I'm not a doctor just longterm crohn's sufferer so you may like to run these ideas past your Gastro doctor but I dont htink they'll hurt so long as you start slowly with both to see what you can tolerate. I'd hate to hear that you became totally blocked up from them - unless it was just for the inconvenient times!