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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Newly diagnosed, but a little confused


03-11-2014, 06:29 PM   #1
elr
 
Join Date: Mar 2014
Newly diagnosed, but a little confused

I have lived with some of the symptoms of Crohns disease for most of my life, but dismissed them as allergies. After mostly clear allergist results, I was referred to a GI specialist. I finally had a colonoscopy last month, and the results showed that I likely have Crohns. This came as a bit of a surprise to me. I have lived with pretty much daily diarrhea (between 2-7 times a day) for as long as I can remember (if not daily, at least 5 days of the week). I will get horrible stomach aches after eating, then go to the washroom and have a BM and my stomach will be fine. Sometimes it lasts a little longer, but not often. I will also occasionally have these issues early in the morning or right before bed (regardless of whether I have eaten).

Those are pretty much my only symptoms though. I have never in my life experienced constipation. I may have fatigue, but I don't know how you would really identify that (I also have hypothyroidism, which would also lead to that). My weight has been pretty steady, even when I wish it would decrease. I have had blood in my stool only once or twice in my life.

I guess what I would like to ask is if anyone else has experienced anything similar. I have been reading a lot of people's stories, and they all seem so much more extreme, so it is still a little hard for me to believe that I have the same thing. It has been hard with this being completely undiagnosed, so I appreciate having answers from him, but it was not the answer I expected.

I am also curious about 'flare ups'. These symptoms have been a complete constant in my life (except maybe 2 months as a teenager). Do they usually get better/worse at different points in time? Is this something that will probably happen with medication?

Thanks
03-15-2014, 02:46 PM   #2
UnXmas
Banned
 
Join Date: Oct 2012

My Support Groups:
Hi, I think if you look at it from the perspective of a healthy person, you'd see your situation differently. For healthy people, diarrhoea is a very rare event - a few times a year at most, usually after eating something bad. Diarrhoea multiple times a day is in no way normal. Blood is never normal, and nor is stomach pain. Constipation is actually only rarely seen in Crohn's disease.

While there are plenty of dramatic stories and severe cases of Crohn's, not all cases involve surgeries or other emergencies.

You can be thankful that you don't have a terrible case, but I think you've also perhaps been putting up with an awful lot of nasty symptoms without complaint for a long time, and you deserve to get some proper treatment and see if you can't feel even better!

Crohn's is a disease that varies a lot. I suspect there's also a tendency for the more severe cases to end up being posted online - those with mild disease are less likely to seek out online-support and tell their stories.

Periods of flares and remission is typical of Crohn's, but again, it varies a lot from one person to the next. You may find that with treatment, your disease goes into remission, making your disease pattern more in line with the typical case.
03-15-2014, 04:27 PM   #3
blackli
 
Join Date: Nov 2013
Location: Burlington Ontario

My Support Groups:
Hi elf, I agree with unxmas. Most people who seek help in these forums are in a more serious condition. Very similar to the travel rating websites. You never seek an audience when things are great! I have what seems to be a milder case, for the last 18 years or so, diagnosed late 30's. I say mild because I've never had surgery, fistulas etc. Had my share of the many other issues this disease brings along with lovely side effects of crazy meds. All I can say to you is it will get better.....and it will get worse.... Just embrace and enjoy the good days!
03-15-2014, 05:22 PM   #4
Pink
 
Join Date: Nov 2013
Location: Ontario

My Support Groups:
Hi elr,
My 19 y.o son has had mild symptoms almost since birth but was only recently diagnosed. He developed normally, and became used to his symptoms. Although Dr's had investigated off and on, they did not find anything. Blood tests were normal etc. It was only when he had a colonoscopy and Scope did they find disease. They decided to do a more invasive procedure because his symptoms worsened. I hope your CD remains mild. What meds have been proposed? Good luck to you!
03-17-2014, 10:52 AM   #5
akduck
Senior Member
 
Join Date: May 2012
Location: Alaska
elr - I have a similar story! In 2005 I started having occasional stomach pain, mostly after eating. Then I started having diarrhea occasionally. both progressed to more often, but for several months I didn't think much about it. I finally went to the dr. in the fall. I hadn't realized that I had lost about 10 pounds. The dr did a lot of tests, including a scope, and they didn't find anything, so attributed it to stress. I would have months of being fine, then back came the pain / D. Then it would go away. I would go to the dr some times, some times not, because they never found anything. I never had blood in my stool. I actually got on this site several times, and after reading the stories, I was positive that I did not have Crohn's - my symptoms were not near as bad as "these people"! In the fall of 2011 I just didn't feel well. From October to December I went to work, came home and napped till dinner time, then went to bed. I was tired, my joints hurt, my stomach hurt more than not, and I ran to the bathroom all the time. I went to the dr. on the first Monday in January. They did a complete workup and scheduled me for a scope. Before the scope I ended up in ER with diverticulitis. they did a scan in ER and showed thickening of the terminal ileum! Suspected Crohn's! I really didn't believe it... The scope was off the table due to the diverticulitis. For the next three months I was treated for the infection, went dairy free, and began to feel better. I had a follow up on April 8 - told the dr. I felt better than I had felt in years! The scope was rescheduled. The NEXT day, about 2 pm, I start having a little pain in my abdomen. By 3 pm my boss said "you look like you don't feel good - go home". Went home, took 2 tylenol and slept till 5 when the pain woke me. by 6:30 I was throwing up. At 8 pm I was in an ambulance headed to ER. Scan showed a full obstruction that had perforated! So I went from feeling great to that in 6 hours. I was 4 days in the local (Alaska - small town) hospital, then because the perforation caused an abscess, I was medivaced to WA, 5 days in the hospital there! They couldn't get a drain in the abscess, so I went home on Prednisone and antibiotics, finally got a scope in May - diagnosis = Crohn's! Had a resection in July to remove the damaged small bowel and abscess. All of the doctors kept saying that I looked so healthy it was hard to believe I was so sick. I still have times when I find it hard to associate that I have the same disease as many of the people on this forum! I have felt pretty good most of the time since my surgery. I have altered my diet a lot, use probiotics, B12 shots weekly (was every other day for 6 months!), take D3 and a good multi, calcium and juice several times a week. So, yes, you can have mild or intermittent symptoms and still have Crohn's. I hope they get you sorted out, with whatever you have, before it becomes an emergency!
03-19-2014, 07:50 PM   #6
elr
 
Join Date: Mar 2014
Thank you all for your answers on this. I just had my follow up appointment with my GI (he was running late, so unfortunately I got fewer answers than I would have liked). I have officially been diagnosed with 'indeterminate colitis' that he says is 99% certainly Crohn's Colitis. As I was saying before, it is nice to have a diagnosis and treatment options. And now I have adjusted to the surprise of it.

UnXmas, thank you very much for your response. It has always been normal for me to get sick between 2-7 times a day. It is also pretty normal in the rest of my family (my mom has celiac and my brother has a lot of autoimmune issues). I have honestly never viewed it from any other perspective and I have not thought about the fact that most people only have diarrhea a few times a year.

Pink, my GI prescribed me Asacol-800, so mesalamine. I started it today and hopefully it can get things better. Up until the last couple of months I had honestly never thought about the fact that I might not have to live with the symptoms that I do. I had pretty much just accepted them as a fact of life. Now I am more hopeful, though I am also a little more nervous about future complications.
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