I'm Kat and I was diagnosed a month ago.

[Orchid]

Hi, my name is Kat, I'm 23, and I was diagnosed about a month ago now.

For a while I'd had sporadic blood on my stool, with mucus being another common feature. I chalked up the blood to a simple rectal tear or something of that nature and I thought the mucus was something everyone experienced. This continued until December when my symptoms finally escalated, the abdomen pain and all the grumbling and movement made it feel like something was about to burst out. I was also constantly having BMs. The arthritis and constant fever chills made moving intensely painful.

So I saw my GP in January, unlike many of the horror stories I've heard she took me seriously and the ran the bloodtests she needed to do for a referral to a GI and I had an appointment within three weeks. When I mentioned the constant BMs and bloody, mucus covered stools to the GI the first words out his mouth were "Do you have a family history of Crohn's Disease?" and when I answered in the affirmative he replied with "So when can we do a colonoscopy?"

Another two weeks and we learn my colon is full of little inflamed spots and I get a diagnosis of Crohn's Disease. I did a weeklong Prednisone taper and I've been on balsalazide since then also. They haven't really helped though so I'm seeing my GI again next week to see what we're supposed to do next. Truth be told limiting my diet has done a lot more for my Crohn's Disease then medication has so far but it's kind of soul crushing to eat nothing but bagels and turkey for a month or two. (Yes I take a multivitamin)

That's my story, such as it is.

 

[David]

Hi there Kat and welcome to the community. I'm sorry to hear about your recent struggles and diagnosis of Crohn's. My heart goes out to you.

Frankly, I would have been a bit surprised if the balsalazide did a whole lot. It's not the greatest treatment option for Crohn's. But it was worth a try.

As you're in Oregon, you may want to check out the link in my signature since you're not too far away and aren't on any medications that would disqualify you.

Were they able to get an image of your small intestine? Do you have any inflammation there or is it confined to your large intestine?

All my best to you.

 

[Orchid]

It's classic Ileocolic Crohn's Disease, so the terminal ileum also has a bit of inflammation. They also did an upper endoscopy at the same time and found nothing related to Crohn's Disease in the duodenum. Otherwise they haven't done say, a capsule endoscopy to look at the whole small intestine, only the beginning and end.

While what you linked is interesting my Crohn's Disease has been described as "mild" by my GI and I was diagnosed last month, while they require six months of diagnosis.

 

[Grumbletum]

Hello Kat and a big welcome from me too. I'm sorry to hear about your diagnosis but glad that it is mild and that diet is giving you some relief from symptoms. Good on your GP too for being so proactive. It can take a wee while to get on to the right treatment regime - sounds like they are taking a bottom up approach, maybe because you've been diagnosed as mild.
Is it the Low Residue diet that you are trying?

 

[Orchid]

I'm not really "trying" it, it's just bagels I noticed are the food that provokes my symptoms the least. At this point I honestly just don't enjoy eating, it's become this sort of ritual I associate with pain.

 

[Orchid]

I see my GI today. I'm really scared honestly. I remember how bad Prednisone was for my mother and how bad even a weeklong course of it was for my own physical and mental health. I'm scared for how much worse whatever comes next will be. I've read up on many of the common options for more aggressive treatment and they're so daunting, skin cancer, serious risks from even taking one too many pills (not good for a forgetful woman like myself), and I'm worried about getting sick since I've never had the best health.

At least I don't have to pay for any of it myself since my state's health plan has been very good to me.

 

[Allison M]

I hope things are going well for you!
Allison

 

[Orchid]

I'm alright! I was going to do Imuran because I realized I was being a bit hysterical about symptoms since I was still being crushed by my DX when I posted that, but then I my TPMT bloodtest came back critically low (I have about a third of the TPMT a normal person produces) and now I'm waiting to see my GI again to discuss what's next. I imagine it's going to be an ugly fight because I want to try LDN before I escalate to biologics. The idea of going from humble Balsalazide Disodium to Humira or Cimzia as an adult patient with "mild" inflammation (I wish it felt "mild") within the space of three months is kind of daunting. Wish my apartment complex allowed MMJ so I could try that.
There's also the fact taking prednisone is something I can't safely do because of my mental health and the way I reacted to even one week of it. (I'm at risk for developing schizophrenia already)

Otherwise, I'm alright. I have graduated from bagels to eggs and roast beef and I will hopefully never have to smell a bagel again! It'll be too ******* soon if I ever do.

 

[Allison M]

Haha! I feel for you. I ate 6 English muffins this week, but we are done! The thought of another English muffin makes me nauseous right now. I was told moderate to severe, but heck, that seems pretty subjective, and not picked by how YOU feel, but the doctor. Prednisone is scary to me too. But it was the first step in getting a little better, so I did it. I'm on the 6MP and sulfasalazine for almost n2 months and haven't had the TPMT test, so I'm asking next time. Good luck to you. I guess we are going through the start together, so I will be interested in your treatments. My colorectal surgeon seems like he may not be very progressive. I have read the 6MP and infliximab together have better results.but I don't know all that much yet. I hope you have a good evening.

 

[tiloah]

Hey Kat, welcome to the forum. Sorry to hear about your story but glad to hear your case is "mild." I remember dreading eating every meal before my surgery. Awful way to live. Taking steroids led to a full on panic attack (it aggravated my mental health probs), so I can understand the mental health concerns. I was unable to take Imuran because I didn't have enough of the necessary enzyme to process it.

I wouldn't be too afraid of biologics. They are a good treatment option for Crohn's. It might be a good idea to take a mild case seriously so that it stays mild/improves. Biologics work by reducing TNF-alpha, which is in greatly increased levels in Crohn's bodies. TNF-alpha can make you feel awful awful, so taking biologics can make you feel a lot better on the whole, in addition to treating your Crohn's.

Also are you a Homestuck?

 

[Orchid]

I was going to mention what tioah wanted to say about TNF-a so instead I'll just go over why some doctors like to prescribe 6-MP or azathioprine with a biologic. A serious issue with biologics, especially remicade, is the fact some people seem to develop resistance. The most accepted theory is their immune systems are also attacking these drugs since it sees them as additional invaders. Prescribing 6-MP/Azathioprine is an attempt to prevent the immune system from developing resistance by crippling it on two fronts.

The problem you're mixing two drugs already known for high cancer risk so the sky is the limit for complications. I can see why some doctors would be leery of prescribing both at the same time, especially in patients already considered heightened cancer risks.

And I am kind of Til, I loved all the earlier MSPA strips so I thought I'd love Homestuck. When it didn't click the way Jailbreak or Problem Sleuth did almost at once I thought I just needed to read more. Like Achewood it would become funny and/or good when I read enough of it. I never really had that moment though, in this sprawling character drama there were only two characters I could ever empathize with, Vriska and Kanaya. So eventually gave up on it. But the fans make really cool art!