My case of Crohn's??

[lovethebops]

I am still curious over my recent diagnosis of Crohn's. I am going to a GI next week and I am hoping he will get me on the right track as far as medicine and treatments.

As I have mentioned before, I have none of the 'major' symptoms. I never experience diarrhea, pain, bloating or loose stool. I pass a normal bowl movement twice a day around the same time of day. IS that normal? I am assuming that is not too often...The most I have gone in a day is 4 times (and it was not loose or abnormal and it only happened once recently), but I thought it was due to the extreme stress I was under.

After reading through the Crohn's online website, I seem to just be experiencing just the complications- Chronic anal fissures, An abscess and a resulting draining fistula, which has not been repaired yet. I was told by the last colorectal surgeon I dumped that I would be hard pressed to find a surgeon who would preform a fistulotomy on a Crohn's patient. I am often in a LOT of pain from these symptoms, and have yet to find any relief-which leaves me cranky and exhausted all the time. Nobody has been able to help me so far. I just wonder how my body seemed to bypass all the 'normal' symptoms of Crohn's and skipped right to all the awful ''complications''.

At the colonoscopy I did have 7 weeks ago, they found 4 small millimeter sized sections of inflammation and upon a biopsy scan, determined it was a 'mild' case. How can it be mild?? My body (rectum) got an infection and tunneled a path to the outside of my anus! That seems so serious, not to mention the pain I experience on a daily ongoing basis.

I have treated the fissures with the ointment ($100 worth) and muscle relaxers. They helped, but these fissures are excrutiating and I have had them for a year now. I am at my wits end, and I cannot even sit still from the pain they cause. Enough is enough! I will never go into remission if these problems are not solved. I can't seem to find any relief, and I am about ready to just have the surgery because I am functioning at less than half staff, and it is affecting my young children.

ANyone had a case like this out there?? No diarrhea, stomach pain or bleeding. Just exhaustion, and problems with the last 6 inches of my bowel and a chronic infection from the fistula. I cannot find any link to food, since these symptoms seem mostly external...??? I am so confused and I cannot WAIT to talk with my new Dr. I am so anxious to be feeling better and get back to as normal as possible with this disease. I guess the hardest part was accepting in, and I am getting there, but I just want to feel better.

Can anyone relate??

[lovethebops]

Thank you. I did discuss options with my new GI Dr, this week. We are trying some antibiotics for 1 month and then biologic medications would be next, like remicade should these first options not work.

My case of Crohn's seems mild in their opinion and only affects the last 6 inches of my bowel. Unfortunately, it can be hard to treat this symptoms. However, I am finally being treated and I am thrilled to have such a wonderful Dr. I am on the right path to remission.! :)

[lizziecee]

Hi - Crohn's is a really complex disease and the symptoms do vary enormously from one person to another. In your particular case, it seems you have "fistulising Crohn's" and this can be helped by Remicade injections, or some of the other newer anti-tnfa bioligic medications such as Cimzia etc. Perhaps you could talk to you gastro about these meds?

take care,
Liz

[April2]

Shoot, I'm still kinda in denial and it's been 2 years for me, lol. I do understand!
Yes, lets keep in touch and try to support each other. I too, would like to see more responses on this forum. Maybe we can revive it a bit! Let us know what happens next! Take care,
April

[lovethebops]

Thank you for your comments and kind words.

I agree, I try to explain how awful I feel and what I am going through, but my family just seems to think I am being whimpy or complaining. At least that is how they make me feel. It is really miserable always 'sitting' on a painful problem, literally. Plus, I don't feel the need to tell everyone one I know my exact symptoms, since it involves a very private area and private parts, one's I don't talk about in public ;)

It is helpful to come here and talk with some of you. It does make me feel better, but I wish there was more support here, we could use it!

It was not until recent weeks that I have really accepted what is going on. I knew what I was dealing with, but I did not want to label it as 'Crohn's' since it is an incurable disease. I get scared when I read about how bad it can get or what the complications could be. But, label or none, it is what it is, and I am still dealing with the symptoms I have. So, I have been better at just accepting what is going on. Just stopping the fight of denial took some of the tension out of my body. I am trying to take that energy and use it for hope and positivity. Although, I must admit, on days when I feel really awful, it is VERY difficult to remain positive.

Again, thank you for your responses and kind words! I hope to update you when I see the GI specialist this week. Hope he can offer some advice, help, and treatment.

Bops

[April2]

I too didn't have the traditional Crohns symptoms! That confused me and my doctors. They were sure I didn't have it because I didn't have the normal weight loss, blood in the stool, etc. I did have the stomach pains, loose bm's or diarrhea and a obstruction in my small intestine near the terminal illeum that they took out and tested. That's how they came up with the Crohns diagnosis with me. Everyone was surprised, including me! No one in my family has this (it can be genetic). The closest was my grandmother who had colon cancer twice. So I do have to be careful, I guess, since I have that cancer in my family.
I totally understand how you feel. I questioned the diagnosis for a long time. Finally, the sent me to a specialist because I was still getting the stomachaches and loose bm's and he agreed with the two pathologists that it was Crohns but that was the only outbreak and since they took it out of me, he said I was in remission. That was a year ago. I'm starting to get a few symptoms that has me wondering if it's back.
I guess there's different levels of severity one can have with Crohns. Some people have it real bad from mouth to anus. Some people only get one or two outbreaks and that's it. They can go into remission or never have it come back again. It can be very different for different people.

Know we are here to support you and everyone else with this disease! It's good if we can all be here for each other and support each other. It makes you feel a little less alone, you know? If you're like me, it can be hard to talk to people, like your family or friends, if they don't really understand. So, we understand and are here for you! Please let us know when you know more. I hope you get some answers soon! Take care & God bless.

[Urth81]

Hey there,

I can relate to you're non traditional symptoms for Crohn's disease.  I hope meeting with your doctor will help to clarify some things for you.  My advice on that?  Be picky about your doctor, if they don't answer your questions adequately...find a new one.  Good doctor's make all the difference.

With the non-traditional symptoms, when I was diagnosed I did a lot of research.  Reading everyone's personal stories actually confused me more because that wasn't me.  I was exhausted, and eventually started getting sick a lot, but I've never had diarrhea as a symptom of Crohn's.  Its funny, I've actually argued with a nurse at the ER when explaining that it was Crohn's even though I wasn't experiencing that symptom.

I wish you the best of luck!

[coughting]

I have chrons and also had a fistula (it ended up being 2 different ones).  I had bowel resection and the bariatric surgeon also fixed the fistula so yes they do fix them.  He did state that he could just fix the fistula that I also needed a bowel resection.  But as it turned out I really did need it.  My small intestine was all infected (about 2 feet) and it was a mess.  He removed 3 feet and inside the wadded up intestine he found colon cancer.  Because of him insisting that they do a bowel resection they caught it early and that was in June 07.  It was caught early and I had no other treatment.  Just follow up with the oncologist every 3 months for blood test and exam.  So far everything is fine.  My chrons is in remission and I am doing great.  

[shlwood]

Hi,
  I was diagnosed with Crohn's 3 years ago; so, I can relate to your problems.  I do have the other symptoms that you have not experienced such as diarrhea, abdomen pain, mouth ulcers, fever,and nausea...sometimes vomiting.  I know what kind of pain you are experiencing, and it's frustrating.  I, too, get anxious and irritable.  It's  difficult dealing with a chronic illness.  I don't know what to tell you except to check out the Crohn's Foundation online; they do have some good tips.  Hopefully, there will be a cure found for us...Crohn's wasn't first diagnosed until 1932, and that's not that long ago compared to other illnesses.   Just know that you are not alone.