IBS v. possible IBD, need any advice please!

Jessica, I'm sorry you are struggling so much.

Hyoscyamine is apparently prescribed to treat peptic ulcers and other stomach pain, but have you ever tried a bile binder like cholestyramine (questran)? Since you no longer have a gallbladder, it could be that you have bile irritating the bowel and causing a lot of these problems.

It sounds like you are getting the right tests done. I would also encourage you to try a gluten free diet (2-3 weeks should give you some good info) even if your bloodwork comes out fine. When you had the colonoscopy done, did they also do an upper endoscopy? If not, that is something worth discussing with your GI.

Jessica,

Due to the bleeding I would go back to your GI asap. There are so many options available to help you. It takes a little experimenting to find exactly what is right for your body but I think you'll agree that getting your life back is worth the experimenting. I apologize for how long this post ended up being.

I hope your GI will include the following tests at your next appointment:

1. A broad blood panel test including Vitamin D levels. Research is showing there is some sort of connection between low vitamin D levels and IBS. Vitamin D is not usually included in blood panel tests so your doctor has to specifically request it. You will want your reading to be between 30 and 80. A healthy athlete would be expected to have a level around 60.

If you also have low iron levels you may be having malabsorption issues which can be helped through diet adjustments and/or vitamin/mineral supplements. Another common malabsorption vitamin is B12.

2. A fecal sample test for candida, protozoa, fecal pathogens, ova and parasites.

3. If you live in a large city, your doctor may have access to a hydrogen breath test machine to exclude fructose and lactose malabsorption and bacterial overgrowth. Otherwise try four weeks of no fruit and see if that improves your output. Talk to your GI about bacterial overgrowth. Bacterial overgrowth simply means the bad gut bacteria have reached levels higher than the good gut bacteria. This can cause pain, swelling and diarrhea.

A surprising number of IBS cases turn out to be bacterial overgrowth and respond positively to appropriate treatment with Xifaxin (an antibiotic), moderate levels of soluble fiber, and a very low level antidepressant that stops intestinal spasming.

The low level antidepressants are called tricyclic antidepressants. They are listed from having the least to the most side effects according to National Health Institute tests: nortriptyline, desipramine, amitriptyline, imipramine, and doxepin.

I also recommend taking a probiotic. I use VSL #3 Double Strength because my insurance covers it. Insurance will not usually cover the single strength. If you need me to find cheaper alternatives let me know. I have list somewhere but it will take a little research to find it again. It takes at least three weeks before the probiotics take full effect. It has worked very well for me but everyone is different. I was up to 20+ bowel movements a day and now I am down to 5 which is extremely good for someone without a colon.

I have been using a phone app called GI Buddy to track diet, pain, exercise, bowel movements, meds, sleep, lifestyle, and stress levels. It puts together a report for my doctor that summarizes everything so that we can look for patterns that may contribute to bad IBS episodes.

The GI Buddy app is sponsored by the Crohn's and Colitis Foundation of America but it is useful for anyone with digestive problems. It is only available in North America. If you live outside that area you will need to go to Gibuddy.ibdetermined.org to download the desktop version.

Over the years, I have had many diets suggested to me. I tried almost all of them and nothing really worked for me. Each of us has very different trigger foods. The fastest way to identify yours is through keeping a food journal and doing an elimination diet. It does not take long and is not hard to do. You will find good instructions at http://ibdcrohns.about.com/cs/mesalamine/ht/fooddiary.htm

This is one of the best elimination diet directions I have found:
https://www.fammed.wisc.edu/sites/default/files//webfm-uploads/documents/outreach/im/handout_elimination_diet_patient.pdf

Immodium taken before you go to class or work can help. Some doctors like to prescribe Lomitil. I found the over the counter Immodium more effective. White rice and bananas can also help slow your system down so loose bowel movements become more solid.

Stay away from any fried foods or foods full of fats. Wheat products, nuts and berries can also cause problems for many people. You can have a reaction to wheat without testing positive for gluten intolerance.

You mentioned stomach not abdominal pain. Can you describe that a little more? Is it stabbing, acidic, aching, etc.? I wonder why the doctor didn't do an upper endoscopy?

If you don't have insurance or enough money to cover these tests, talk to the business office at your GIs and at your hospital. I had $244,00 of medical bills covered by the hospital and doctors. We still had to pay the other 20% due to our ability to pay that much. I was very surprised at how respectful the business office was. I was never made to feel like a beggar.

I hope this information helps!

PS. A couple of products that help me with joint pain are soaking in a bath with 2 full cups of epsom salts. The relief can last many hours. I also like Perform Pain Relief. It is made by the same company that makes Biofreeze but it is 100% better. I buy it at my local pharmacy. Physical therapy offices also carry it but it is not a prescription.

Thank you for the thorough response. You are doing great at describing everything. So far your doctor is doing all the right things but he needs to know about the bleeding right away. What color is the blood and how much do you think there is? Is it just a trace, bright or dark red, etc. Is it sometimes or every time? Bright red traces on the outside of your stool could be from the internal hemmoroids. Ask your doctor for enemas that treat hemmoroids.

I ended up using alprazolam as the most effective anti-anxiety med. It does not stay in your body for long but works pretty quickly. It is worth it to keep trying other meds because our bodies are too individual to predict which one will be the best one for you.

I would not be worried about being labeled a drug seeker just for wanting to try more effective anti-anxiety meds. The people who get labeled drug seekers are usually those in chronic pain who are building up strong tolerances to what is considered "normal" dosages.
Remember you are the customer buying the doctor's services. You have every right to ask to try more effective treatments and most doctor's appreciate the patient's requests.

Luckily the asthma medicines will not interfere with any of the drugs used to treat IBS or IBD. I also have asthma and have been treated for IBD for 25 years.

Were you taking two Immodium before every meal? It really makes a difference as to when you take the Immodium.

Since you cannot have the MRI right now, self-help measures are your best option. I would recommend the food journal and elimination diet. Eat small meals but more often. Trying a low residue, low fiber diet might give you some relief. Here is the list my son and I follow. He is 20. http://www.mayoclinic.com/health/low-fiber-diet/my00744
We substitute rice flour for wheat and generally tolerate spelt or rice bread and pasta. If you have no reaction to wheat, then you will not need to make these adjustments.

Since you are a college student, you have extra challenges especially if you are anything like my wonderful son. He has to force himself to eat regular small meals as well as two small high protein snacks. You also need to make sure you go to bed before midnight. Going to bed after midnight even if you get a full 8 hours sleep still weakens your immune system.

College foods that can cause a lot of pain include pizza and soda. Beer can also cause painful gas to get stuck in your abdomen. Cherry juice and a heating pad can help clear things out when you just cannot resist that tempting piece of food. Sometimes I admit the pain is worth it. For me my biggest temptation is chocolate mousse made with chocolate that has less than 80% cocoa. My son's most painful foods are pizza and spaghetti. Use the GIBuddy and you will find out what your danger foods are.

Let me know if any of this helps. All the best, Szm

I'm sorry you are suffering and have no concrete answers. I know how frustrating it can be.

It seems the dr is doing all they can to find the cause of your pain. But you definitely should get the endoscopy when you can. Dark red blood is indicative of bleeding higher in the intestinal track or stomach. It's basically "old" blood.

I've been reading on the net abound other additional causes of abdominal pain. Do you suppose you are having issues with your pancreas? Such as acute or chronic pancreatitis.

Try reading on here and see if anything raises the red flag:

http://connect.mayoclinic.org/discussions/1889-chronic-abdominal-pain

I got a call first thing this morning from my GI and I am able to get in for an appointment this afternoon instead of 2 weeks from now. Yay!

Based on that pain scale, I would say my pain on a day to day basis is normally a 5, can be a 6 on bad days and spikes up to 7. Yesterday, for example, I was out ice fishing with my boyfriend and I was having kind of a bad day (dumb of me to go out on the ice, but I didn't want to sit at home by myself all day). After about an hour of being out there, I felt instant pain of about 7 and I had to go to the bathroom ASAP - if I didn't get to bathroom it wasn't a matter of if I was going to have an accident, but when. Luckily, we were on the end of the lake where my friend lives and I was able to walk to her house and use the bathroom but I was very close to not making it. Between when the severe pain started and when I almost didn't make it to the bathroom was a span of about 20 minutes. The pain was so bad after I used the restroom I ended up laying on her couch for 1-1.5 hours before I was even able to try to get up to go back outside. During that time I had diarrhea another 4-5 times also with some blood present. The only thing I had eaten that morning was toast, egg whites and a pancake with no syrup, I knew to stay away from the sugary syrup since I could already tell it was going to be a bad day. Normally, eating this for breakfast would in no way make my stomach that upset...but on a bad day, or bad weeks it's seemed like lately, pretty much anything I eat will give me diarrhea.

When I got home last night, my mom saw me come out of the bathroom again crying for the umpteenth time and said that she doesn't care how much the MRI costs at this point and that she wants me to have it done. So I will be scheduling that today when I see my GI.

I would love to be on something to manage my pain better, but again, I don't want it to sound like I'm begging for pain meds. I know this is something I need to get over or else I'll be miserable all the time but it still makes me nervous.

I'm really hoping my appointment this afternoon gives me some answers. Wish me luck!

Well, I shouldn't have gotten so excited. Just another frustrating, disheartening GI appointment. I feel helpless and like this is never going to end or no doctor is ever going to actually help me. My GI pretty much said "it's IBS, here's some medicine, see ya"

I pretty much went through all those tests for nothing, again, just like I did a few years ago. Everything came back normal except the presence of blood in my stool (which he totally discounted) and my small bowel xray showed lots of stool. He pretty much completely discounted the amount of pain I'm in when I use the restroom because it's "not consistent with an IBS diagnosis" so he basically pretended like I never told him. He told me the rectum MRI was no longer necessary. He also discounted my fevers and joint pain because it's also "not consistent with the IBS diagnosis" so he can't explain why it's happening. So apparently it's just happening because my body wants to, which is a total crock of crap.

I tried Levsin (hyoscyamine) a few years ago and it made me nauseous so he pretty much said there's nothing he can do for me because that's one of the only IBS treatments. He put me on a children's dose of Bentyl and said "we can try this medication, but I doubt it will work since Levsin makes you sick". How uplifting...not. OH and he also made it a point to make a rude comment about my weight. He said, in a rude tone, "For your weight, this is a very low dose so that's another reason it probably won't work." It's a CHILDREN'S DOSE, that is considered low for ANY ADULT. I mean yes, I am overweight, but not extremely. And I have been in the process of losing weight, so that was a low blow to my self esteem. He kept question the Levsin making me nauseous saying that it was impossible because it's supposed to make cramps go away, my stomach is just very sensitive to medication in pill form. Then he also made it a point that if this medication doesn't work for me that there's nothing else that can be done for me because no other medication will work. Talk about panic attack when having to think about living like this forever, with no relief.

He said that this medication, "for normal IBS sufferers" (like I'm some sort of anomaly), is supposed to help stop cramping that causes the sever diarrhea. I understand that and yes, that can be a problem for me. But I know the difference between a CRAMP and actual PAIN. What I experience all day every day is PAIN, with cramping right before and after I use the bathroom. But of course, he didn't want to hear that either. He said it's just cramps.

He gave me no other information on diet, what I should & shouldn't eat, probiotics, how to manage my pain since Tylenol provides no relief on my "bad days" or even how to manage my diarrhea since Immodium doesn't do it for me. And he said he doesn't prescribe Lomotil because it's a derivative of a narcotic (not like it worked much better anyway). I even told him in the last month I've had to miss class and work from the pain and not being able to get off the toilet and I might as well have not even said anything because it's not like he took it into account. I sat in his office crying almost the whole time I was in there because I just felt hopeless and he didn't say ANYTHING about me being upset or ask why I was crying. He just said, "having IBS isn't fun".

I just feel so lost and upset. This is literally taking over my life day by day and I feel like no doctor will help me because this is the 2nd time it has happened. I understand IBS is kind of mysterious or whatever, but my God at least give me some direction of what I can do to help myself, some form of pain management or SOMETHING. I cried the whole way home and have been crying off and on all night when I think about how lost I feel. I have had one bad panic attack in my life and I seriously feel like I'm going to have another one thinking about having to live with this pain all the time. I am honestly very scared and feel like I've been pushed back to square one.

My mom was VERY angry and one of the first things she said is she wants to find another GI to give me a second opinion. I understand that if it's IBS than that's what it is, but I just want some direction. But, I know that fevers and joint pain aren't really consistent with IBS so my gut is telling me that IBS may not be the culprit, or if it is, not the ONLY culprit.

I am just so tired of the waiting games, because while I wait I'm miserable. And the thought of having to find a new GI and re-explain my whole medical history and story is exhausting, I know it's necessary but still exhausting at the same time.