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Undiagnosed years of digestive pain. Now approaching answers

Hello everybody, I've come here to try and get opinions of real people that are most knowledgeable about possibly what I'm going through.
To start when I as 9 months old I went from 20-15 pounds and couldn't hold down any food, I was hospitalized 6 weeks and put on IV nutrition as my intestines lost all the ability to digest. I was diagnosed with celiacs disease. 9 years later with a GI at my young age I had a series of endoscopes and gluten challenge and found I was not having celiacs. I had some scarring at the bottom of my esophagus and was diagnosed with GERD and have been on Prilosec ever since.

I am 28 years old now and around 24-25 pretty bad cramping and pain would happen several times a day. This has pretty much consistently continued until now. I saw a Dr 3 times and was prescribed bentyl. I requested a colonoscopy and he said I wasn't there yet a couple years ago. Starting in May my pains worsened and I dropped weight, probably 10 pounds since March until now. I got blood work done and I was low Iron, 6% transferrin sat. 19 IG/DL Iron. I had elevated CRP levels of 5.5 showing inflammation somewhere and a stool sample showed detectable blood even though I couldn't see any. I have seen blood in stools and a month ago with diarrhea usually just small spots four or five max.

My pain is mostly around my belly button to where I wear my pants for reference.

Starting a month ago I got real sick with a flu like illness, sore throat, diarrhea, and fever, my wife had it too so I didn't think it was not normal. Every week for 3 weeks at one point a fever came back and I then treated an ear infection and haven't had a fever for 2 weeks. I've had racing heart a couple times leading to palpitations and have missed two weeks of work because of extreme fatigue. I just barely move around well at all for any sustained period longer than 10 min. Feels like low iron type symptoms, my stools are soft usually but not diarrhea.

I went to the ER and my CBC came back with my HGB levels I the normal range now. It was 11, now it's up to 13.6 in a months time but I feel worse!! I'm waiting on my colonoscopy but I feel like I won't have the energy to do the prep! I never miss work and I'm running my mind in circles scared of my health. My stomach always has pains at points throughout the day and it's never caused me to miss work, I've had joint pain for a couple years during this, but now I just feel so weak and tired all the time! I want to see if I can get an iron push in an IV just to help me get to my colonoscopy but Kaiser won't do it for me citing side effects.

I'm just at my wits end and wrote a ton here but wanted to see if anyone thought this sounded like Crohn's like symptoms, if it is I'm thinking my problem is in my upper bowel because that's where all my pain is. Thanks for listening, I've never felt so drained mentally and physically!
 
Hi. Sorry for what you are going through. Some of the symptoms may or may not be Crohns. Are you on iron or b12? Also, you mentioned your belly button. I have had some pains lately around that area due to a possible hernia and I wonder if you could be dealing with that also. I hope yoiu get some answers soon.
 
I've started taking iron supplements this past week, they make my stomach hurt especially during the night for some reason. I took the higher dose and my stomach hurt really bad most of the day, I did have energy! But now I'm on a low dose gentle iron and I don't have as much pain but maybe I don't feel as many effects absorbing it??

Also my pain around my belly button area is just a general descriptive area, the pain is usually when you can hear my gut gurgling and bubbling, like feeling, where it actually kind of pulses as I assume food and liquid passes. A lot of times gas follows.

Also I've been on a opiod medication for many years, probably helped mask some of the pain that would've made me beat my Dr door down sooner. I think it is this opiod medication that it currently keeping my stools just like a soft serve type consistency. Opiod medications constipated most people.

Anyway, thanks for the reply. Seems like a very supportive place and I know what I'm going through pales in comparison to so many here, it's really the increased number of fevers and chronic fatigue that has me really scared.
 
Hello, im a newbie here diagnosed 2 weeks ago and started meds 9 days ago so not really feeling any better yet so what your feeling and going through I was there not too long ago. I think the stress leading upto it all is much worse than the procedure. I had an endoscopy and colonoscopy for them to find my Crohns. The prep isnt really that bad just never stray far from the toilet and prepare with lots of the right foods (liquids). I am a diabetic and had to constantly monitor my glucose levels and I managed fine. All I remember is being put to sleep at the hospital and waking up and not feeling a thing. I felt normal no pain or discomfort.. just really hungry. I too was/am very weak, have low iron and inflammation, fatigue, pain, nausea... the list goes on. I rarely make it out the house had to leave my job because I was so unwell. I can tell you now the depression is lifting and I am feeling optimistic about things again because I am no longer in limbo with no real answers. You just have to find the strength because it is the first step to getting better and getting your life back.
 
Thank you so much, it sounds like you and I have similar stories. It makes me feel good just to hear others are managing. The depression and anxiety of not knowing have really put me in a vice. My work is very understanding so far I hope to be able to do at least the desk work part of my job as I seek answers.
 
Location
San Diego
I've suffered with anemia due to my Crohn's, so I take iron supplements. According to the medical studies, you get the best absorption of iron by taking the pill on an empty stomach in the morning along with vitamin C to acidify the stomach. So that's what I do. I just take the standard 65 mg iron pills, since your body cannot absorb even that much all at once, much less an even bigger pill. Taking any more just increases the chance of stomach upset without increasing the amount absorbed. I do get some mild nausea from the taking the pills on an empty stomach, but I reduce that by eating a little food, some yogurt or something, about 30 minutes after taking the pill.

Do not take the coated type of iron pills since they will delay the release of the iron until the pill is far down into the intestine, well past the section of gut where iron is absorbed. Nearly all the iron absorption happens in the duodenum, the section immediately after the stomach.

If taking pills still upsets your stomach just too much to handle, talk to your doctor about getting some IV iron. That may be the way to go for you.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1774131/pdf/gut05301190.pdf
 
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I've been requesting the IV iron but unfortunately they deny me this. I understand they want to find the root cause and treat that first but I want to have enough energy to make it through the day!

I have been low in iron many years ago on a blood test before I was having strong symptoms in my gut, I switched to a multivitamin with iron and I went just into the normal range. Now obviously I'm well below normal. Thank you for all the insight, I may try the liquid iron, anyone have any experience with the liquid??
 
Also I was wondering if anyone had several years of symptoms with some months being worse than others before being diagnosed? I know I should've pushed them harder early on, I was told basically sounds like IBS but with my lab results I'm not thinking that really.

Anyway if anyone was feeling symptoms for a while and either got DX or had another problem I would love to hear about it. Just reading here has made me mentally feel better, I know I don't know yet what's going on but I have inflammation in my GI tract and blood coming from somewhere, it's good to know there's many out there managing these types of problems.
 
Location
San Diego
Yes, I had many years of symptoms before being diagnosed. At least 10 years, maybe as much as 15. I can't really remember when the ileal-region pain and occasional unexplained fevers started. It just sort of crept up on me. But since the symptoms always eventually got better and were relatively mild to begin with no one, including me, paid much attention to it.

My inflamed small bowel, thickened in the ileal region, was observed on X-ray a full year before diagnosis when I suffered a ruptured appendix. But that was dismissed as residual inflammation that had spread from the appendicitis. So it wasn't until I came down with severe anemia a year later that anyone seriously looked for and found the Crohn's
 
I have tried the liquid iron I could not stomach it, the taste was horrible. It may just be the brand I bought but im in Australia so you may have something more palatable where you are.

As for the symptoms I had them for years just didn't know what it was. I just thought because I was a bit of a wild child it was the repercussions of my lifestyle. I was always plagued with fatigue and as a young child I was sickly.
 
In feeling a bit more energy, I'm almost to 2 weeks on iron. Coming here and reading has actually really helped my psyche.

I've been told for a few years now I have IBS and stress/ anxiety. My pcp keeps saying get checked for Bi Polar! I have been checked by independent Psychiatrists years ago and have ruled that out. Just sucks even with my lab results showing that there's inflammation, bleeding, and blood levels dropped my primary is still a jack ass. I am switching Dr and will be dealing with a GI mostly now as well.

Anyway I hope this fatigue continues to get better as maybe the Iron can build up in me, I have had low iron before I was having really bad gut pains and blood in the stools.

Also I have seemingly always had mucus in my stool for years, I always looked at it and wondered but did no research. Coming here has helped me realize this happens with inflammation.

Thank you all, I can deal with the gut pains and bowel movements and still work, but this anemia type fatigue and multiple fevers and little infections really hit me hard. Hope that keeps getting better before my scopes.
 
I have been at work for 2 days now. It feels good to be back, I still have all my digestive pains whenever food passes through areas, makes me cringe and bend over, start sweating and then pass gas or go to the restroom. This is what I have been dealing with for years though and never caused me to miss work.

I have been on Iron supplements for 2 weeks now and 2 days ago started liquid iron along with a low dose pill and I finally feel like my iron has come up a little bit or something because i can at least walk around my office and talk to people and be at my desk and not in bed all day.

I hope I don't continue feeling weak like the last few weeks again. All the fevers and low iron I think just took it out of me.

Thanks for all the support here, I will update when i get my results from the scope.
 
I have been at work for 2 days now. It feels good to be back, I still have all my digestive pains whenever food passes through areas, makes me cringe and bend over, start sweating and then pass gas or go to the restroom. This is what I have been dealing with for years though and never caused me to miss work.

I have been on Iron supplements for 2 weeks now and 2 days ago started liquid iron along with a low dose pill and I finally feel like my iron has come up a little bit or something because i can at least walk around my office and talk to people and be at my desk and not in bed all day.

I hope I don't continue feeling weak like the last few weeks again. All the fevers and low iron I think just took it out of me.

Thanks for all the support here, I will update when i get my results from the scope.
I wonder if you might need an iron infusion.
 
I wonder if you might need an iron infusion.
I asked for one at the ER but they and my PCP said since my HGB rose from 11 to 13 in the month between my blood tests I wasn't eligible for it.

Problem is I have been low in Iron before, have always been very pale. I think obviously the blood coming from the GI tract has worsened it pretty bad. I really wish they would just do it for me considering my iron was pretty darn low, I know others are in more severe cases of anemia but i had never felt this weak before personally.

Hopefully these oral supplementations can work for now. Thanks for the support.
 
I asked for one at the ER but they and my PCP said since my HGB rose from 11 to 13 in the month between my blood tests I wasn't eligible for it.

Problem is I have been low in Iron before, have always been very pale. I think obviously the blood coming from the GI tract has worsened it pretty bad. I really wish they would just do it for me considering my iron was pretty darn low, I know others are in more severe cases of anemia but i had never felt this weak before personally.

Hopefully these oral supplementations can work for now. Thanks for the support.
You are welcome
 
Energy has gotten a little bit better and I have been able to make it to work. Crazy now it seems like my gut is flaring up good again, more frequent BM's, the pain as anything passes through whatever part is from my belly button on down and all the gurgling and pulsing and gas along with it. I could describe it as feeling like rocks are pushing through me in a narrowing passageway. My stools this year have gotten noticeably narrower too.

I suspect because of the opiods I have been on for years my stools never get to diarrhea that often as it constipates most people and used to do so to me.
All it does for me now is keep me from having D it seems. Just real soft stools etc. I know its all lovely information but my mind is finally confronting all these issues I have put aside and i appreciate all i read here even when its stuff we wouldn't talk about in public normally.

Has anyone had their colonoscopy when they were actively in a flare? Did evacuating your system cause you a ton of pain?
 
My upper scope was fine.

My lower scope he couldn't get past the end of the transverse colon because of a stricture. But he took biopsies, so pretty close to having a complete picture I think of what's going on.
 
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