Diverticulitis or Crohns?

[CrohnsPatient]

My first post!

I've had a history of gut issues for as long as I can remember, probably 10 years. I am currently 31. Back in 2008 I had a colonoscapy and my GI doctor thought I had Crohns but did not put me on a treatment plan. I had seriously low B12 and D levels so he gave me a booster shot for the B12 and 50,000 micro-unit vitamin D pills and sent me on my way.

1 year later to the day I was rushed to the hospital with the worst pain of my life - I thought I was going to die for sure! After some CT scans they told me I had perforated diverticulitis - one of the worse cases they've ever seen! After about 2 weeks of not eating and taking tons of pain meds and antibiotics my condition was only getting worse - FAST!

So they told me my only chance to live was emergency surgery w/ colostomy. I was 29 at the time and EVERYONE in the hospital said I was way too young for this type of diverticulitis attack (statistically speaking, not sympathetically), not to mention one this severe.

I healed up very slowly and with complications - a big abscess developed and I had to walk around with a drain for almost a month, but I finally recovered. I waited 4 months to reverse the colostomy, but when I had my 2nd surgery, the surgeon wasn't happy with the connection so I got an ileostomy! What fun!

I lived with the ileostomy for 3 months and had a 3rd surgery to close it. I was healthy again, or so I thought.

Fast forward to 2 months ago, I began to have abdominal pain again, I was experiencing arthritis, inflammation of the eyes and blood in my stool with mixed diarrhea and constipation. I had a CT scan at my surgeons request and they found "an abnormality of questionable significance".

So I made an appointment with a new GI doctor and he did a colonoscopy last week. Found a lot of ulcers in my small intestine. We're waiting for biopsy and blood results now but with all the other symptoms I have he believes I have crohns as well.

So he decided to start me on Entocort, and already I'm feeling a little bit better. Not 100% but the pain I've been having these last 2 months is definitely less.

In retrospect I wonder if my diverticulitis attack was some sort of crohn's attack in disguise! I guess I'll never know!

 

[Crohn's 35]

Hi CP, welcome :bigwave: Too bad your doctor didnt treat you or at lease investigate further, you may not have had the route you went through. You should of been on something, prior. Sorry you had to go the longer route.

Many people here to help you,someone can share their experience. :hang:

 

[xJillx]

Hi and welcome! I am with you, I wonder if you ever had diverticulitis. It very well could have been a Crohn's flare up.

I am glad you are doing well on Entocort. Have you and your GI discussed a maintenance drug? A course of Entocort will take care of the inflammation, but you'll need a daily drug to keep it from returning.

I hope you continue to feel better and better each day!

 

[KWalker]

Welcome! :bigwave:

 

[CrohnsPatient]

Thanks all!

What distinguishes a Crohn's flareup? I certainly am no where near the pain I had prior to my emergency surgery, but I just have a sorta on-going pain, like I was punched real hard in the gut a day ago and I'm still sore from it.

Would that be a baseline pain from Crohns, or perhaps a minor flareup?

I don't want to get into too much detail, but I was self medicating (think private forum) for a while and soon after I stopped my symptoms began to progressivly get worse.

 

[xJillx]

A flare up is different for each one of us. For me, a flare includes lots of trips to the bathroom with mucus and blood. I rarely have D and, luckily, my pain levels haven't been too bad. However, for others, a flare could be ab and joint pain, constipation, lots of trips to the bathroom or any combination; there is such a wide variety of symptoms.

I suggest keeping a daily log. Record your symtpoms, BM's, and what you eat. It will help you determine what your triggers are and symptoms. This can be helpful when meeting with your GI, too.

 

[David]

Greetings and welcome

After reading your first paragraph, I have to wonder if you are once again taking vitamin D and B12 injections? I assume you were found to be deficient then which means you are likely deficient now and proper supplementation can make a world of difference for you.

 

[CrohnsPatient]

Thanks for the tip David!

I am waiting for bloodwork to come back before taking any vitamins but I bet I am deficient in both B-12 and D as before. My tongue has been hurting a lot lately and I think I've read it can be from a B-12 deficiency.

Also I am ready to nap most days by 11:30 AM - 1 PM, what causes this type of fatigue? I used to think its normal but I don't ever hear anyone else yawning or looking as tired as me (bags under eyes)! This happens even when I get a good night sleep.

 

[David]

For a Crohnie, two of the most common causes of such fatigue would be iron deficiency anemia and/or B12 deficiency.

 

[CrohnsPatient]

Makes sense, last time I had a B12 booster shot I felt like superman for the rest of the day!

How often does one typically get the boosters and can they be self administered? I am not afraid of needles. If I recall correctly, B12 oral supplements didn't do much for me.

 

[David]

How often you get injections is unique to you. Some people have to take them weekly, others monthly, and others still every few months. The best bet is to get your levels tested and then as you supplement, continue to get them tested so you know where you're at with the particular dosage you take. I personally feel people should have a level of 500 or higher though most doctors will say 200 or higher. Yes, you can self administer, many here do or have a loved one inject them.

 

[CrohnsPatient]

I talked to my doc today on the phone and the biopsies showed significant inflammation in my ileum, so along with the ulcers and past history of arthritis, episcleritis, etc, along with the Entocort working, I think we have a pretty certain diagnosis of Crohn's!

I'm excited in that I finally know what's been wrong with me all these years, and hopeful I can do my part to minimize the pain and possibility of surgery from this incurable disease. Postive thinking!!

I was also deficient in Vitamin D, but nothing else. I'll start supplementing immediately!