Newbie trying to be diagnosed

[art_nj]

Hello,

I'm new to the forum, but I'm certainly not new to having "stomach" issues. I've been reading so many stories here and I guess I'm not the only one frustrated by not being able to get a straight answer as to what I have or don't have.

To make a VERY long story short, I started having "stomach" problems 27 years ago, when I was 13 yrs old... I'm 40 yrs old now. I was diagnosed 6 years ago with IBS and that was the last time I saw the GI doctor...until recently. Of course I had flare ups and pain over the last 6 years but I just dealt with it myself and got through it alone.

This year has been different. I started experiencing more abdominal pain, more frequently and lasting longer (sometimes 4 or 5 straight days). I have NEVER EVER been the type of person to have chronic diarrhea. By June the pain was horrible and I developed a fissure with bleeding (blood clots and all). I went to the GI doctor and he did a sigmoidoscopy 2 weeks ago. During the procedure he discovered that I had an ulcer in the colon. He said that he was "very suprised" to find an ulcer because he believed the bleeding was from the fissure and not an ulcer. He didn't diagnose me immediately because I am not experiencing chronic diarrhea. He ask me if I had ever heard of Crohn's disease because that was what he thought I may have. I went for bloodwork and I have to go for a colonoscopy in early October.

I got the results of the biopsy and bloodwork. The ulcer biopsy came back as "inflamed" (which I already knew). The bloodwork came back as "borderline positive". My doctor is on vacation but another doctor looked at my chart and said he can't diagnose me because I don't have "all of the symptoms" i.e. chronic diarrhea. The nurse said that when I have the colonoscopy done in October the doctor will have a better idea as to whether the ulcer is inflamed due to an infection or if it's a "chronic" inflamation. She said if its still inflamed in October, it's a chronic inflamation and it can be diagnosed as either Crohn's or Colitis.

Is this normal? I understand that it's very difficult to diagnose. If it is chronic, will they be able to tell which of the two it is, Crohn's OR Colitis? A part of me is regretting going down this road. After 27 years though, it would be nice to confirm that I'm not mentally deranged! Anyway, thank you for taking time to read this. I'll be around here for the long haul it seems!

Art

 

[mommy1st]

Hello and good luck. When I had my colonoscopy done the biopsies came back consistent with Crohns disease, but I already knew that I had it. I'm not sure if they are that specific or not. All I can say is hang in there and document your symptoms that will give your doctor a better idea of what is going on with you day to day. So best wishes on this roller coaster of a diagnosis.

 

[Chrismom]

Welcome to the board! I am very new here too, and I don't have many answers for you I am learning as I go. I sounds to me that you really don't have much faith in your treatment. There are a lot of specialist out there, maybe you should try another gastro doctor.

 

[teeny5]

Crohn's and UC can be hard to diagnose...trust me...they still don't know which one I have. I guess because I only have inflammation and ulcerations in the large colon it could be either. Who knows...treatment is the same pretty much so all in all it would still be IBD either way.

 

[art_nj]

Thank you for the warm welcome and words of understanding. I guess I worry about having to undergo a ton of tests just to have no final answer. I don't want to switch doctors because I do like my doctor and it was only 2 weeks ago that he even mentioned a possibility of having Crohn's. I've decided to wait it out and see what the results are in October. If I'm not happy then, I'll seek a second opinion. Is there anyone else here diagnosed with Crohns/Colitis but no chronic diarrhea? I think that was the thing that shocked him the most. Anyway, thank you again!

Regards,
Art

 

[Isla]

That would be me. I didn't have much diarrhea to be honest, though it was bloody during my 3-4 days of it. And it was VERY mild diarrhea like 2-4 times a day. My main complaints or symptoms was pain and a hard distended belly, worsening when I ate. I had a partial obstruction at one point as was hospitalized, but they were stumped on the cause. I had a colonoscopy, biopsy, and pill camera all of which were negative but my pANCA ASCA came back as consistent with Crohns. My doctor was unconvinced I had Crohns but decided to try me on Asacol - after about 6-7 weeks the Asacol started working thus confirming my Crohns.

My journey isn't really like anyone else, yet I have the disease. Just because you don't fit the "classic case" doesn't mean you don't have it. And you may need to remind your doctors that not every presents with typical symptoms, that you may have an atypical case.

 

[teeny5]

I have never gone more than 6 times in a day on my worst days. I have never seen blood either. My usual is 1-2 times a day...3-4 when flaring.

 

[soupdragon69]

Hi Art,

Glad to see you found us here. Welcome!

I started with stomach and abdo pain and running to loo when I was 11yrs old. I turn 40 next spring and was finally diagnosed with Crohns in my ileum Xmas 06. So to fight for an accurate diagnosis is a "normal" thing here for many. You are definately not alone!!

If its any consolation my gastro cons and my GP both thought I had Coeliac Disease (where you cant tolerate gluten in foods and it destroys the villi in your gut that absorb nutrients from your food). I had a battery of tests and was so fed up being poked and prodded. It wasnt til the results came back from a gastric emptying test (how fast the food moves from your stomach and through your system) and also a bile salts test (we reabsorb bile salts in our ileum - approx 27% my GI said and I was only reabsorbing 3%) that he realised I probably had Crohns and a colonoscopy finally proved it.

Hang in there. We all totally understand the frustration and doubts too. The wondering if you are making a mountain out of a molehill. If you are just over reacting. YOUR NOT! Crohns is very much an individual thing and so it is possible to have it and not have diahorrea. Possible to have it and never have surgery. Possible to have it and just need very mild meds and change your diet minimally too. The spectrum is very wide. Its just a case of finding what works for you whether its Crohns, Ulcerative Colitis or something else.

Keep posting, keep asking questions and keep us up to date with how you are getting on. We are all here for each other and thats what makes this forum all the richer.

Welcome again. Looking forward to seeing you around.

 

[art_nj]

Thank you!!! I feel terribly for anyone going through this, but I'm so glad to finally know that other people out there going through similar experiences.

For the last 6 years I have had a weird feeling in my lower left side. I doesn't hurt constantly but my lower left side feels sore and if I lay flat on my back, you can sometimes see a tube-shaped bulge. When it is bothering me, a bm usually makes the swelling go down and it doesn't feel sore anymore....until the next time. When I first started feeling this 6 years ago, I went for a colonoscopy, but they didn't find anything. About 10 months ago, the pain started getting very sharp sometimes. The sharp pain lasts for about 30 to 60 seconds, stops and then a minute later I feel it again and this goes on and off for an hour or two.

I already warned my husband they better not tell me "there's nothing there". If that happens, it's a second opinion for sure!

Anyway, thank you again. I'm glad to have met you all.

Regards,
Art

 

[teeny5]

I get that tube shaped bulge too. Told my doctor was like having a stuffed sausage in there! My worst pains don't last very long either thankfully comes in waves like it sounds yours do. Hope they figure out what is going on. I for sure had inflammation and ulcers show on my colonoscopy.

I wouldn't wish this disease on my worst enemies either. Don't know what I would do if I hadn't found this site. No one has any idea what we go through who doesn't have it.

 

[teeny5]

I know people are trying to help, but I hate when they try to give me a bunch of suggestions....eat this, try that. I try to explain to them that I have either already done that or I can't eat that. One girl had diverticulitis and kept telling me I needed to eat what she did to get rid of it. She didn't get that we don't have the same thing. Just frustrating when they assume that it was something you ate all the time. I have been very careful with what I eat and had nothing new and still I feel awful. I guess they are just trying to help in their own special way. I think they forget that it is not curable honestly. Every time I have a good day and then a bad one they always say "I thought you were getting better." I always have to remind them that the disease doesn't go away.

 

[AbstractDonut]

Yep I think I would stick with the October look as well. Inflammation is the key sign really, and its sorry they are thinking its Crohn's.

 

[Skippy]

Hi Art,

I'm pretty new to this too. From what I was able to learn about the crohn's and colitis diagnosis from my own experience is that YES it is important to have the colonoscopy. From the colonoscopy your doctor should be able to tell you exactly what you have. Most of the time, doctors have an idea about what is wrong but can't fully confirm it without a colonoscopy. From there, then you start a course of medication which can involve steroids, TNF-blockers, and other wonderful drugs. I was diagnosed with Crohn's about a year ago but have never had chronic diarrhea either. Good Luck with everything!
KIM

 

[art_nj]

Thank you to everyone who has opened up to share their own very personal experiences with me. What a wonderful group.

Because I'm new to the possibilty of having Crohns, I guess I may have some unrealistic expectations regarding the whole process of being diagnosed.

For my own curiosity...and this will sound stupid...what do the medications do? Is it to control the pain, get rid of the ulcer, prevent a new ulcer? And, once you are put on medication do you take it forever or are you on it during a flare up only? Because THAT is the thing that scares me most. I am very much anti-medication and taking meds is going to be a very difficult mental hurdle for me to get over. Especially steroids. I had to take them once for a rash and I didn't do well with them.

Ah well. I may be jumping the gun. I'll guess I should wait to see what the colonscopy results are.

Art

 

[teeny5]

I am only on anti-inflammatories and I guess that is all they do. They don't get rid of the pain unless lessening the inflammation helps the pain. Mostly I have heard that you could be on meds for the rest of your life even if you are in remission to help maintain remission. Taking meds is hard for me too. Up until this disease I only took my multi-vitamin and birth control. Rarely got sick so never took pain meds or cold meds at all. Seems like now I take a billion pills...makes me question if it is good for my body or not.

 

[drew_wymore]

Hey Art. First welcome, you've found a great bunch of folks to help you get through this. I, like you don't have chronic diarrhea now, I did initially but its went away. I also, like you had the problem of "active" versus "chronic" inflammation.

As far as the meds go, it depends on what you're on.

Steroids are used as an anti-inflammatory as well as immuno-suppressant.
5ASA's are anti-inflammatories used to control the ulcerations but seem to work in mild cases only
TNF-a Blockers aka Biologics are used as immuno-suppressants as well but they work on a different mechanism then steroids or things like methoextrate or imuran.

Good luck and keep us updated on what you find out.

 

[Skippy]

Hi Art,

I'm currently taking Prednisone (steroids), Pentasa (anti-inflammatory), and Humira (TNF- blocker). The combination of these three have allowed me to eat more things than what I initially was able to. However, I still can not eat chocolate, coffee, anything carbonated, any caffeine, grisly meats, gaseous vegetables and foods, hard candy, hard liquor, spicy foods, and limited dairy. It's frustrating, but you realize eventually that it's not a big deal and food is just food - Something to give you energy. You kind of learn to just eat the food for its nutritional content and not for its taste.