Don't know where to turn for help

[wildbug]

Hey all,
I have had chronic diarrhea since I was around 12 years old. I am almost 46 years old now. I was diagnosed with Crohn's Colitis via colonscopy, biopsy, and Prometheus blood test when I was 19 years old. I only had one experience of a serious flare around age 27 where I lost a lot of weight in a short time and was in great pain and discomfort for several months. Luckily I got things under control with Asacol. Earlier I had taken Azulfadine for years but eventually went off of it on my own. I took the Asacol for a while and then went off of it.

In 1998 I developed severe food and chemical sensitivities. I went on the Specific Carbohydrate Diet (SCD) to manage my Crohn's. During that time I got another colonscopy and went on Asacol again. I stayed on the Asacol for 6 months but my symptoms got worse and worse. I went off the Asacol on my own. I have had diarrhea ever since then, for about 7 years straight now. I have tried diet, supplements and herbs to manage it but nothing helps for very long.

Over the last year, things have gotten weird. I feel like I have some kind of blockage where I can only expel a small amount of feces when I go to the bathroom. It is usually liquid. Then when I get up and wash my hands, a few minutes later I have to rush back to go again. This repeats sometimes 4-5-6x in a row. It's as though when I stand up, the blockage clears and allows a small amount of feces to come through but as soon as I sit again, it blocks up. It seems to be a combination of diarrhea and constipation, as I always feel like I can't get everything out when I go.

I have had severe environmental illness since 2004 and the last colonoscopy prep was very hard on me. I have been trying to avoid getting another one. I don't know where to turn for help, though. I don't know how to get a diagnosis. What could be going on with my intestines? I did test positive for blood in my stools with an occult stool test, although it's not visible blood.

I'm hoping to get some ideas on what could be wrong and what the possible fixes are. After one of my colonoscopies I ended up in the ER in the worst pain I have ever experienced in my life. They kept me there for 2 days but could never figure out what was wrong. They said I was just dehydrated. This is part of why I don't want to get another one done. It was just awful. And now I am so much more sensitive due to the environmental illness. It would be very hard for me to be in a hospital now due to my chemical and electrical sensitivity. This makes going to doctors, getting tests done, and getting treatment much more risky.

Any thoughts?

 

[archie]

Hi and welcome and sorry your having so many issues. I'm not sure what environmental illness is so I can't really advise on that can you elaborate? One way or other your going to have to weigh up the benefits of getting tests versus the risks. If you have a blockage you always run the risk of it becoming worse and then you will have no choice as hospital and possibly surgery will be the only answer. Can you not possibly get a scan / tests done as an out patient and hopefully onto some meds to help control the crohns? One way of other doing nothing isn't the answer unfortunately. Good luck and hope you get some help soon.

 

[wildbug]

Thanks for responding so quickly Archie. Environmental illness is when you react to things in your environment. So for me, it has meant severe respiratory distress (reactive airway disease) when exposed to certain chemicals like air fresheners and cleaning agents commonly used in many public spaces such as hospitals. I am also electrically sensitive and can get severe symptoms affecting my heart and brain just being near microwaves and other electromagnetic fields. So doctors offices and hospitals are hazardous to me. I have had severe reactions to foods as well so taking the prep for a colonoscopy can be dangerous for me. So in my case, "doing nothing" was preferable to doing things that I knew would cause me serious respiratory, cardiac, and neurological reactions. In actuality it wasn't that I did nothing. I chose to use the SCD to manage my symptoms for 7 years.

I have experienced some healing of my reactivity level in the last year and have improved my chemical and food sensitivities enough to now consider a doctor visit and tests. So this is why I am here; to figure out the most logical testing route to take. You mentioned getting a scan...can you be more specific? What kind of scan is that? Aside from a colonoscopy, what are the diagnostic tools/tests now available? This is what I was hoping to find by coming to this forum.

Thanks to anyone who can help.

 

[Jennifer]

Well you already have a diagnosis so right now what they would want to do is figure out if you do in fact have a partial blockage (which it sounds like you do based on your symptoms) and see it its inflammation or scar tissue or both that's causing a stricture in your intestines somewhere.

Tests may include a CT scan (http://www.mayoclinic.com/health/ct-scan/MY00309), a small bowel follow through/barium swallow with x-ray (you ingest barium and they take x-rays as it passes through), a barium enema/lower GI (barium is pumped up into the rectum so they get a view of the colon, not a fun test), MRI which uses no radiation (http://www.webmd.com/a-to-z-guides/magnetic-resonance-imaging-mri), colonoscopy, endoscopy, ultrasound, there's also the pillcam but I don't think you will be doing that one if you're already dealing with a stricture as it will get stuck. If I'm missing anything someone will chime in I'm sure.

So far from what you mentioned you may want to start out with an ultrasound and then maybe an MRI if you and your doctor think its ok since you do have another condition that makes testing difficult.

Once they figure out if there is a mass and what's causing it then you'll likely be put on a series of medications to treat it. Hopefully its just inflammation as that can be treated but if it is scar tissue then there are only so many things you can do with damaged tissue (cut it and restructure it if possible or remove it entirely). I think what Archie meant about "doing nothing" was in reference to going off of the medication prescribed to you repeatedly. Often times we feel well or we feel like its doing nothing or more harm than good so we stop the meds but don't try something else. There's a lot of different treatment options out there and you and your GI will figure out what works best for you and if it doesn't work, then try something else because it is a chronic illness with no known cure and many of us do need medication or some form of treatment (even EN has been effective with some people http://www.crohnsforum.com/wiki/Enteral-nutrition).

Welcome to the forum!

 

[wildbug]

Thank you Crabby, that is really helpful. When I went off the meds the last time, it was because they were making me worse, not better. Also, I didn't do "nothing," - I went on the severely restrictive Specific Carbohydrate Diet for 7 years to manage my symptoms. I did okay for that time period but always felt like a small thing could set me off. With environmental illness, being on meds is dangerous. 3 out of 4 of my liver detox pathways were impaired. That means that I had a lot of trouble detoxifying xenobiotics (medications). So I just want to be clear that I didn't just do nothing, but I used the methods available to me given my severe reactions to foods, chemicals, medications, doctors offices, hospitals, etc. I can't explain to you how isolating of a lifestyle I have had to live the past 8 years. I was not able to get into a doctor's office without experiencing respiratory distress and neurological harm. I just had my first doctor's appointment in many years, and I had to travel 5 hours to find someone who could treat my condition. I asked him to refer me to a gastro doc in my area so I could get a colonoscopy but he wanted to wait until he gets the results to all the blood tests he took on me. They took 23 vials of blood. I am hoping to have some answers shortly and get referred to someone. Thanks for responding.

 

[Jenny06xx]

Keep us updated Hun we all like to know how others are getting on.

Environmental illness sounds very isolating indeed An I'd never heard of it before so I looked it up !! Clever me lol

So are you actually allergic to certain things in the environment like u say airfreshener an polish etc or is it kind of a mental disorder like you can't actually be around those things for some reason or u get panic attacks etc ?
Sorry that sounds dull but I don't think I looked up the best site to explain it .

Also a fantastic way to a complete look at your small bowel is a pillcam but u must have a dummy run first coz it can get stuck in strictures as mine did but where I am there's no dummy run lol
Jen xx

 

[ThatsWhatSheSaid]

Hi there. I'm new to the forum too. I've been reading for a long time but decided to join yesterday because I'm starting to feel like I no longer know what to do about my Crohn's issues. But that's for another time.

The 'pillcam' mentioned above is called a capsule endoscopy in the US. I had one last January. They say it is capable of possibly detecting more subtle issues. They gave it to me directly after a colonoscopy because the doctor felt that the ulceration and inflammation he found was not significant enough to explain my pain and symptoms at the time.

I don't know anything about your other issues mentioned, but it sounds like this could potentially be a problem for you because it involves having a receiver attached around your waist to receive all of of the information taken from the pill as it runs through your system (ie there is probably some kind of electrical activity going on). I would also be a little hesitant from the respect of if you DO have a blockage knowing what would happen to the capsule.

I did not have any issues with it. It's very large to swallow, but I'm a skilled professional at taking pills:ycool:....so I just popped it in my mouth and swallowed (my mom's recollection as I don't have one from the colonoscopy drugs I was under). Then the nurse handed me a water and suggested I drink some. Anyway, I could not feel it in my body and never saw it exit.

A word of caution- make sure that your insurance covers it and if they don't that you are aware of what it is going to run you. I'm still trying to get mine covered and it was a year and a half ago.

It does sound like you need to go to the doctor, even considering your other issues. Remember, once you are at the doctor's/hospital, any issues you may have with your other illness can be promptly attended to. If you have reservations about it, make it very clear when you schedule your appointment and maybe call in ahead of time as a reminder to them. The strain of active crohns on your body is so difficult and trying for your whole system....getting it under control may allow your body to be better prepared to deal with your other issues.

Good luck.

 

[wildbug]

Thanks ThatsWhatSheSaid and Jenny06xx for your kind replies. Jenny, environmental illness is physical - it comes from some sort of toxic injury that affects the brain. I had the illness for many years and did not improve even with all the lifestyle changes I made. The illness is poorly understood and like other poorly understood processes (remember how ulcers were said to be from stress until they discovered the H. pylori bacteria...), Western Med labels it as psychological until a mechanism is proven scientifically. I did not start improving my symptoms until I realized it was primarily a neurological toxic injury to my limbic system. I have been doing brain retraining programs aimed at the limbic system and have had some exciting results in the past year. I finally can wear clothing and sleep under blankets, which I couldn't do before due to severe respiratory reactions. I had been injured by mercury and mold in the late '90s and early '00s. This is a physiological illness but because it affects the brain and the part of the brain that affects mood and personality, it can appear to be partly psychological. But if you address the physical brain injury, the symptoms can be improved greatly and in some cases, cured. Hope this helps explain it better. In some cases, people do get anxiety and panic along with other physical symptoms like breathing issues, seizures, etc. but that's because the injury is in the part of the brain that controls the fight or flight reaction. The fight or flight mechanism is impaired and not functioning appropriately. Many people are experiencing life changing improvements by retraining the fight or flight reaction. Western med has not caught up to this yet, however.

 

[wildbug]

ThatsWhatSheSaid, thanks for explaining the pillcam. I would not choose that procedure for several reasons. I think I will have to get a colonoscopy and/or other scan. I'm pretty sure I have blood in my stools - visibly now. My fear is just that the diagnostic procedure will be so invasive to my sensitive system that it could cause new problems or make things much worse. But it seems I don't have much of a choice if I want to find out what is going on in there. This sucks!

 

[ThatsWhatSheSaid]

I'm sorry that things are so terribly difficult for you. We each have our own version of misery it seems. Just remember that you are in good hands. And find yourself a doctor you really trust. I love my gastroenterologist more than any doctor I've ever had. He is wonderful. If you were in Wisconsin I'd recommend you see him. There is a Mayo clinic in Arizona, one of three in the US, and they are the best. They have extraordinary specialized care for digestive disorders. Additionally, because they are always on the cutting edge of medicine they may be better suited to help diagnose and treat you in consideration of your other issues. I included the info for the one in AZ for you. Best of luck! Remind yourself if you start to worry, if something bad is going to happen because you are at the hospital...there is no better place for it to happen. They have everything they need to take care of you already on hand.

Arizona
800-446-2279 (toll-free)
8 a.m. to 5 p.m. Mountain time, Monday through Friday
(I tried posting the link to the Mayo Clinic website but am not allowed because I haven't made 10 posts yet. Google it.)

 

[wildbug]

Thank you so much, that is very helpful to know. xxx

 

[archie]

sorry wildbug I didn't mean you had been doing nothing I was talking about the future as in if you did nothing now re tests etc it wasn't the answer in case it is a blockage. Sorry for all your other issues sounds complicated and hope you get the advice you need

 

[wildbug]

Thanks for clarifying Archie. No worries. Yeah, I don't think doing nothing will work at this point. Things are progressing and the blockage is getting worse. Seems I will need to take action very soon. Appreciate all the responses here and support. xx