[Tanesha Hillmann]

Over a matter of 6-7 months I have been experiencing pain. I was 17YO at the time and am now 18. Started with simple nausea and now...
I have been thru so many tests; stool, urine, and blood tests, endoscopy, colonoscopy, ultrasound, CT scan, MRI, X-ray, gallbladder scan, check for appendicitis. The full work up, and was finally given the (as my doctor worded it) "the lack of a diagnosis," IBS. I don't really believe it, I feel like there has to be something more. I have not expienced constipation nor diarrhea. I have severe nausea, before, during, and after eating; bad enough I wish I would throw up (but never do). My pain happens almost randomly after eating, but always every morning when I first wake up. And is either in my left or right side beneath my ribs. Before I have pain I either get really cold or really hot; this is how I know I need to isolate myself.
My pain can last anywhere from generally 10min-2hrs with 4hrs being my longest time period where I was them taken to the ER. not much helps me when I am in pain. I am most comfortable curled up, pushing on my stomach. Occasionally a warm bath helps the pain but I cannot ever move when I get to this point. I have passed out from pain before also. I have a decent pain tolerance.
I have tried many different things; altering my diet; I have cut caffiene out before, cut out protein,, cut out spicey foods, cut out dairy. Nothing seems to take affect. I have lost 30lbs in the past few months due to the fact that I pretty much fear eating because it generally causes pain. I will ALWAYS eat after work so I know I can make it thru my job.
I am on 20mg of Amtriphyln and 30mg helpsinimize my pain further but I am not supposed to take that much. I also take probiotics and Omprezol.
I have tried natural, self-soothing coping for pain. Doesnt work. Acupuncture doesnt work. Natural herbs don't work. Mint helps soothe but does not eliminate. Heat helps sometimes. Ibeprofen and Tylonel do not help.
I feel useless and alone in this situation. Most people do not think I have a chronic problem (including parents) and it's frustrating. The only one who believes it is my boyfriend (who is a very supportive man and has been with me 9mon (which was about 2mon prior to when my pain first started). I don't know how to help or fix my pain. My gastrologist doesn't seem to be very helpful because I only see her every 6mon. What do I do? I have severe depression and anxiety due to this pain. Sorry this is so long and sorry if it is not in the right category.

 

[jaumeb]

It seems that there are still many things you can try. It's very tiring. I have been trying remedies for years with some partial successes.

 

[Tanesha Hillmann]

Can you list off some things you have tried that I have not? I'm pretty much willing to try anything.

 

[jaumeb]

Sure:

- celibacy and chastity

- SCD diet

- S. Boulardii

- glutamine

And you'll probably find many more ideas browsing this forum.

 

[cmcsf]

DO NOT go on the SCD diet. It's a waste of time. I was on it for 3 months and it only made me worse. I really recommend the low FODMAP diet. I started it about a month ago and it has worked wonders for me. I also have the pain you're describing, which my gastro says is called dyspepsia. I don't know if your pain is dyspepsia, but I recommend finding another gastro who will take you seriously. For this I am currently on Buspirone but it hasn't helped that much, so I'm going to try Desipramine next week. The main thing you really have to remind yourself of is to not give up. It's so hard sometimes, I too have suffered tremendous amounts of pain, to the point where I was suicidal, but it does eventually get better. There are ups and downs but I'm sure you will eventually find something that helps. The low FODMAP diet is actually quite complex and so if you need any help just let me know! I also started a blog two days ago which might help you.

http://sideeffectsandibs.blogspot.ca/%C2

Good luck!

 

[Tanesha Hillmann]

Bump

 

[jaumeb]

Some people is recently reporting success with a grain free diet. It hasn't been the solution for me, but it seems to be working for others.

 

[HPM1984]

hello

See my post today 15 years of IBS- there is not one thing that will work- it will take many things- the most important thing you can do is

1) Read read read

2) Keep a journal of your symptoms and establish your own rating scale (1 feel terrible) 5 (okay but bad) 10 normal or great

3)Try one or two things and see how they work- see my post today- but see number 1 read read read

4) Never go whole hog on one thing- but try it- and adjust

IBS is different for every person- and what works for one will not work for another. Think of it as a chronic condition you have to manage. Diet, exercise, fiber probiotics etc etc - you have to find out what works and in what combination. Some things you try will make it worse- or in the dose you try it in. That is why a succinct daily journal- food, exercise supplements that you use that day are important. Look at your journal for symptoms and then "backwards" to see what helped and hurt. No one thing will work but many things in combination will!

 

[Leo41]

Hi there... can you describe the pain? I have lower left pain, mainly after eating and early morning. When it is bad I would describe it like labor contractions I imagine would be. Peaks and waves.. building and letting go. On the peaks the intensity is unbearable. Once this starts bad I feel nausea, salivating, and throwing up. Usually lasts 1-3 hrs. Sometimes after vomiting I get instant relief, sometimes not. I will feel chills during and after often times, and all body movements very slow.

Do you have mucus in your stool ever?

Do you feel totally normal sometimes between the pain times?

What are your morning bathroom visits like?

You may want to check out my post in this section.

Ray

 

[Tanesha Hillmann]

@Leo
My pain seems to switch sides. Generally my high left or high right, underneath my ribs. Mine also goes in waves like that. Periods of minor, slight discomfort pain, then pain severe enough to make me pass out. These episodes can last anywhere from 10min-2hrs. Usually nausea involved also but have never thrown up. Body chills and/or sweats... I have never seen mucus in stools, it just kind of looks shredded. I'm unsure how to describe it. Its not loose or hard... When I have no pain, I generally feel nausea and have no appetite, I have to remind myself to eat... Morning bathroom visits are generally quick and frantic. When I wake up its usually, "I need to go to the bathroom now!" I also waakd up once or twice thru the night frantically needing to go, also.

 

[Leo41]

Tanesha...

Sounds similar to what I have in ways, but the pain in that area I do not have. As a matter of fact my pain is always lower left, lower left wrapping around the side, or lower left radiating to the back, or all 3. Cannot offer you any guidance there. Otherwise sounds like IBS, but of course not some symptoms of it as well... and I know you have been tested for a lot of other things... did they do a celiac test?

I know what you mean I think about the stool... smallish broken pieces, loose. I get that a lot if so. Yes... many times I will wake early, early in the wee hours.. and start with the urgent going... small pieces as above. Mine usually progresses to near wake up time with the runs, then by wake up nothing but some pain.. maybe a feeling of needing to go.. and a small pile of tiny piece, dust type stool pieces at the bottom of toilet. (not sure if any of this sounds familiar to you)

The similarity in the way the pain hits after eating, driving drastic weight loss, and not being able and scared to eat at work I totally understand. All I can give you is what I have done/experienced and learned. I would not cut out the protein, that is really needed when calories are low. Stay with very small portions of a low fat protein... chicken breast, fish... chew completely and then some. Fat will trigger, where lean protein not as much. I personally have no problem with dairy... I will do a whey protein with lowfat milk, or water for a light food. I eat yogurt often as my only food for hours and hours. I do not do any wheat... still waiting on my celiac test to come back, but I have noticed wheat.. even crackers seem to slightly irritate me.

If this is IBS then your gastrocolic response is way off the chart... made worse by the anxiety and stress of worrying about it... pretty much the same thing I was going through. Not sure if you know what they means... look closely at this....

http://www.helpforibs.com/news/newsletter/09/071409.html#askheather

It has a chart which shows a normal colon and 15 mins after eating with a spastic colon. I have yet to see anything else that literally shows what we go through.

Anyway... that is what happens to me, and may be you as well. First to me.... you need something to stop the spasming. For me that was Levbid. I am really curious why they did not put you on an antispasmodic. If you do not end up on any of these, I'd would suggest trying peppermint oil ( which is a kind of natural antispasmodic). Another thing to understand is an empty colon is a lot more sensitive, so just not eating is not good for this. Small, or tiny meals all day are much better if possible. Have you tried instant oatmeal? Lipton chicken noodle soup has been a staple for me over the last few months.

Then you need something to calm you down... that may be concentrating on relaxing, it may be some anti-anxiety meds. That is the hardest part, at least for me. I was panicking, and freaking out... is gonna happen today... on no.. feels like it is trying to start... should I eat?... if I don't I'll hurt too... etc. You may need to see a psychologist for that, at least that is what they are making me do. For me though... the levbid has calmed it down a lot, and I am not really having any anxiety ATM, if the attacks returned to what they were I have zero doubt the anxiety would return also.

Ray

 

[Tanesha Hillmann]

They did test for celiac disease. I know that for sure. But they never did any definitive test for IBS. Basically they ruled everything out, and said, well, this isn't this or this or this, so we're going to call it this. I believe I have a moron for a doctor. I really need something to help with after eating. This liquid ulcer medication (Carafate) helps a little, but even taking that prior to eating, I still can't eat much and it must be mild in order to avoid pain. How do I bring up antispasnotic meds to her? I would just see a doctor but my mother (who holds all control) refuses. I am from Nebraska and go to the Omaha children's GI. In the meantime I may need to try that peppermint oil

 

[Tanesha Hillmann]

Also @Leo
In reply to an earlier question. I do have mucus in my stool. I have never had that question asked and was unsure what mucus in stool looked like until I investigated further And I do appear to have mucus in my stool regularly.

 

[Leo41]

Tanesha...

How have you been doing recently? As for bringing this up... I would think your mom wants you better, and cannot stand when you are in the pain you are. I would do research online about IBS, and it's treatments (of which anti-spasm meds are first line of treatment.. Bentyl & Hyoscyamine). Print it, make her read it, IF the doc is right and you have IBS only there is no question the pain is coming from spasms, and those are what's used to stop the spasms. Why would she not want you on the meds to help you? I would try to educate her. Read up on "spastic colon". She should be the one (and you) to ask/talk to the doc about this. You want her on your side.

However.. please understand there are side effects, constipation I have been dealing with recently is one.

The only thing that has helped me so far (aside from peeps here) has been to now understand what this pain is, and how it is happening. Then to experiment (through painful trial and error) what is going to work for me. It sucks, yes. But it is something, and this will give you back some control, which helps to lift the doom, gloom, frustration, and despair of IBS.

 

[Tanesha Hillmann]

Recently I have been struggling. I have started the new FODMAP diet, which helps a little. The pain is less severe after I eat and doesn't last as long. I don't eat much, and am still losing weight progressively.
I have now finished my car payments. And will be seeing a normal physician in a week or two, with or without my parents. What should I be asking or telling him? I'm going to start from the bottom again

 

[jaumeb]

Good that the low fodmaps diet is helping. Adjusting the diet and supplements can take many years ...