Introducing myself

[maggiesimpson]

Hi, everyone.

Over the last few years I have had some changes in my digestive health. Nothing really noticeable until this year. I had great difficulty trying to lose weight that had krept up on me the last four years, so I started seeing a nutritionist. With her help I discovered I was gluten intolerant and became more aware of what was going on with my body. I started going through testing for celiac disease, which has only come up negative but has not been officially ruled out. My thinking was that maybe it was my being more aware that I noticed a lot of symptoms, but now I realize that it is a coincidence and things sort of became more prominent as the year has gone on.

I have bloating, cramping, abdominal and stomach pain, both C and D, can see food in my stool, fatigue, brain fog, muscle aches and weakness, sinus congestion, postnasal drip, dry itchy skin, itchy eyes, and that's all that comes to mind off the top of my head.

As for testing, I have done a bunch of blood tests that I can post if someone wants to see them. The only thing that came out of range was lymphs (45 with a normal range being 20-44). My glucose sometimes comes back a point or two below normal rang, has for as long as I have been looking at my results, and these may not have been fasting glucose tests. White blood cells tend to always be on the low end. When I had apendicitis they only went up to 11.0. My endoscopy results came back normal, with no duedenal biopsies showing anything. Colonoscopy came back with biopsies showing chronic inflammation and ulcers in the terminal ileum. I had a pillcam that also showed ulcers throughout the small intestine.

The GI doc said that this is not presenting like crohn's, and it is rare but not impossible for it to look like this. Short of giving me a diagnosis they are "treating it like crohn's." So, I feel a bit lost. I have been trying to gain as much info as I can, and I want to be proactive in my medical care because I do not believe in blindly following what a doctor says. I want to understand for myself. My biggest hurdle with that is most doctors seem to be upset when I ask questions. It seems like they think I am second-guessing them. Granted, I don't have a medical degree, but I do know my body, and I am paying THEM to help ME.

I do not expect anyone here to play doctor, tell me what to do, or anything like that. All I want are your views and opinions. I will take your suggestions as that, suggestions. I make my own decisions, and I am here simply to learn and get advice from all of you.

Thanks for taking the time to read my introduction.

 

[Angrybird]

Hello and welcome to the forum.

I must admit I am a little confused by your docs, I cannot see how your symptoms and the inflammation in your bowel is not a normal sign for crohn's - what more could they possibly need? With the bloods that have been done does this include you inflammation and vitamin levels? Have they started you on any meds at all? I agree that you should be able to questions your docs without feeling like you are doing anything wrong, if you are really struggling with them it may be worth looking to see a new one.....

AB
xx

 

[David]

Hi Maggie and welcome to the community!

First off, if your doctors are getting upset when you question them, it's possible because they don't know the answers. Many doctors know VERY little about Crohn's Disease and a well-informed patient will quite often know more. There are of course a ton of absolutely amazing GIs out there who know so much about IBD and I feel like bowing down to them and walking in front of them dropping rose petals.

Anyway... do you by chance have access to the biopsy results of your colonoscopy? If not, try to get them and share them here if you're comfortable. We have some uber smart people here who might be able to provide some additional insight for you.

Again, welcome! I'm really glad you joined

 

[rygon]

Welocme to the forum,

I find that doctors are happier if you do research information about your condition as it shows a willingness to help yourself. Although you sometimes have to be very diplomatic about how you ask the questions. Ive never had a problem myself but if I found that I didnt get on with a certain doctor I would be asking to move to someone else, as you said they are there to help you.

Most people agree that you cant just take the medicine and eat whatever and you will be fine, but its a balance between the two (others do manage with just diet alone). It is wrth looking at our Wiki pages as they contain non-biased, detailed information

 

[maggiesimpson]

Thanks for the replies and support, everyone! It's amazing how much online support helps.

I have been on Pentasa for over a month. It is making me feels worse than before I started it. When I called to tell the doctor's office they just said to keep taking it and added Budesonide. One of the things I called about was my pancreas being tender and causing pain off and on. That is listed in the info that came with the meds as something to report to the doctor right away. Apparently they don't care. They blew it off and just want to medicate me more. I'm a little frustrated with this. If I felt better before any medication, and they claim they don't actually know what's wrong, then why throw spendy meds at the problem without trying food and environmental factors? I would like to start a family soon, but all this medical stuff is causing me to push it off even longer. I've already had to wait a few years more than I had planned.

Anyway, I thought I'd post my test results that I have for the year. I don't see chronic inflammation listed on the colonoscopy, but that's what they said to me and I'm pretty sure it was in the results letter they sent. Chronic ileitis is listed, but I don't know if that's the same thing or not.

August 20
Pathology report
Diagnosis
A: Duodenum, biopsy
1. small bowel mucosa without diagnostic abnormality
2. no histologic evidence of celiac disease or other enteropathy

B: Ileum, terminal, biopsy
1. nonspecific chronic active ileitis
2. no dysplasia or malignancy

C: Colon, random, biopsy
1. colonic mucosa with no diagnostic abnormalities
2. no evidence of active inflammatory bowel disease
3. no dysplasia

Comments
B: The biopsy shows a chronic ileitis without specific features, differential considerations include medication induced injury versus crohn's disease. The findings include a patchy distribution of inflammation, mild active inflammation, focal aphthous ulceration, mild crypt distortion, no pyloric metaplasia and no granulomatous inflammation.

Specimen/Gross description
Duodenum, biopsy:
A) Received are 4 pink-tan soft tissues averaging 2mm. Entirely submitted in toto in a single cassette.
Terminal, ileum, biopsy:
Received are 4 pink-tan soft tissues ranging from 2 to 3mm. Tissue is submitted in toto in a single cassette.
Colon, random, biopsy:
C) Received are multiple (approximately 8) tan-pink soft tissues averaging 2mm. Entirely submitted in toto in 1 cassette.

September 24
Pillcam Endoscopy Report
Procedure info & findings
There are multiple aphthous ulcers scattered throughout the small intestine, a few larger than other.

Summary & recommendations
This is a complete test. There are multiple aphthous ulcers scattered throughout the small intestine, a few larger than others. The findings are suspicious for crohn's disease, although if the patient has been taking NSAIDS, NSAID enteropathy remains a possibility.

June 26
Lactose Breath test
Normal

July 5
Immunoglobulin A, Qn, Serum Result 235 Unit mg/dl Range 80-450

October 10


Sedimentation Rate-Westergren Result 9 Unit mm/hr Range <20

April 23
Basic Metabolic Panel
sodium Result 139 Range 135-145
potassium Result 4.0 Range 3.5-5.0
chloride Result 105 Range 98-107
co2, total Result 25 Range 23-31
anion gap Result 9 Range 5-18
glucose Result 83 Range 65-100
calcium Result 9.3 Range 8.5-10.5
bun Result 9 Range 8-25
creatine Result 0.78 Range 0.57-1.11
bun/creat ration Result 12 Range 10-20
GFR if not african american Result >60 Range >60

IGA tissue transglutaminase AB Result <1.2 Standard range <4

June 1
C-reactive protein, quant Result <2.0 Range <5
TSH Result 3.87 Range 0.30-5.00
Hemoglobin Result 13.8 Range 12.0-16.0
Hematocrit Result 41.3 Range 33.0-51.0
MCV Result 96 Range 80-100
MCHC Result 33.4 Range 32.0-36.0
MCH Result 32.0 Range 26.0-34.0
RDW Result 13.9 Range 11.5-15.5
platelets Result 315 Range 140-440
neutrophils Results 46 Range 42-72
lymphs Results 45 Range 20-44
monocytes Results 4 Range 0-11
eos Results 2 Range 0-7
basos Results 1 Range <3
neutrophils (absolute) Results 2.2 Range 1.7-7.0
lymphs (absolute) Results 2.1 Range 0.9-2.9
monocytes (absolute) Results 0.2 Range <0.9
eos (absolute) Results 0.1 Range <0.5
basos (absolute) Results 0.0 Range <0.3
RBC Results 4.31 Range 4.00-5.20
WBC Results 4.8 Range 4.5-11.0

 

[David]

Thanks for posting that.

Have you taken a lot of NSAIDs in the past? This would be stuff like Advil, Motrin, Naproxen, etc.

With your symptoms and the biopsy results, I'd think Crohn's Disease. Your labs don't back that up at all, but it's not unheard of for people with Crohn's to have normal labs.

I'm paging Aussie and Dustykat as they know a heck of a lot more than me on this stuff.

 

[David]

As for the Pentasa making things worse, in addition to the pancreatic pain, what, if any symptoms got worse?

 

[Hobbes650]

It's wierd that your gi doc said it's not presenting itself like Crohns when your biopsy says there is chronic ileitis. Ileitis is a term you don't hear much anymore, and that's what Crohn's disease used to be called. Sometimes the hardest part is getting the right diagnosis, so I hope you get this all figured out soon!

 

[maggiesimpson]

David,

I used NSAIDs regularly for about a year 12 years ago. I don't think I took a ton. Maybe a max of 4 advil or similar 4-5 days a week to get through work. I was put on high doses of ibuprofin a few times since for work related injuries, but I usually didn't stick with it for more than a week or two. It never seemed to help. None of them ever did, so I gave up on them. I may as well have been taking sugar pills. :ytongue:

My symptoms on Pentasa were a little confusing for a while because I was told to make so many changes around the same time. I started on it shortly after going g-free again. An allergist the GI doc sent me to had me quit dairy and juice for 1 month. I was suppose to quit drinking pop, too, but I was so tired I was afraid I'd fall asleep on my drive home from work. Pop is the ONLY thing that seems to help in that situation, so I still drink it. Shame on me. I also was right in the middle of making changes with my thyroid meds. I went from a two pill combo back to just one. I assumed that the dose was too low, but found out I am right at my ideal level with it.

That means that this insane fatigue is likely related to Pentasa because I don't see how cutting out dairy would do that. There has been no change in the amount of pop I drink, either, so I don't think that has anything to do with it. So, there is the fatigue that is making it hard for me to get anything done. My bm's were predictable for the most part before this. I'd always go in the AM regardless of whether I worked overnight or slept a normal night. Anywhere from 1-5 movements in a two hour period. Stools were also really soft and volumous (sp?). Now they are more formed and look funny. I guess the best way to describe it is they are still fairly soft, just sort of have some shape to them, and look almost like they have fringe all over. Bms happen anytime, and any number of times. I cannot plan on them anymore. No more working around them.

I constantly have an upset stomach, plus the pain behind it. I assume it's my pancreas, but what do I know? I am achey. Muscles are tight. I have knots around my shoulders that I cannot break down no matter how hard I try. I also have unusual muscle weakness. My job is really physical, and I am struggling with it lately. One more thing came up, but I don't care to go into much detail on it. I don't know for sure if it's related or not, but I do not normally have femanine issues. I did read somewhere that that is a potential problem with the meds.

I look forward to your insights on the matter.

 

[David]

First, regarding the feminine issues, you may want to post in our private, women's only forum located here. You're welcome to post about it here, but many women prefer more privacy.

With that sort of NSAID use, I don't think it's NSAID induced colitis.

Have you by chance had your vitamin B12, vitamin D, and magnesium levels tested?

 

[Aussie]

Hi David and Maggie,

There's a fair bit of information there, in summary, Maggie, you have a few years of gut symptoms with ileal biopsies showing crypt architectural distortion and multiple small bowel ulcers on capsule endoscopy, and you haven't been on NSAIDs for 11 years. All pointing towards small bowel Crohn's.

The key results here are your biopsies and capsule endoscopy.

Ileitis is a general term for inflammation of your ileum (2nd half of your small bowel). When looking at the histology (microscopic view) you might see non-specific inflammation, ie. Increased inflammatory cells, this can be caused by a number of things. However, the crypt architecture should be normal in all causes of inflammation with the exception of inflammatory bowel disease, which causes crypt architectural distortion - really important finding!

In regards to capsule endoscopy, it is normal to have a small number of apthous ulcers (perhaps 5 or less, although some think upto 10 still a normal finding). Sounds like you probably have more than that. Again pointing to Crohns.

Best test would be faecal calprotectin - if high, you've essentially clinched the diagnosis (if you need more proof).

By the way, active Crohns can cause some tiredness, although some of your symptoms do sound typical of a food allergy, which can also cause a profound tiredness. Has your allergist tested you for food allergies, other than gluten?

Best wishes.

 

[maggiesimpson]

Thank you so much! David, I am still learning my way around the forum. That's great that there's a women's section. I don't think I've seen that on the other forums I go to.

I have not had any nutrients tested, but I am creating a list to bring with for my next appointment. Wouldn't a digestive problem be cause to order those tests? It surprises me that I've gotten this far and not a single doctor has thought to check. The allergist put me back on multivitamins under the premis that I'm not absorbing enough from my food. It would be nice to know whether or not I really need to be taking them. My goal this year was to get all my nutrients from my food and eliminate the need for a vitamins.

Aussie, the allergist didn't want to test for food allergies because he feels it's a waste of time. He sort of persuaded me to not get that done, but I am going to request it anyway when I see him again. He thinks that if you are allergic, it will be obvious, and if any food bothers you, then you should avoid it. He said there was no way to test for intolerances except to eliminate them and see how you feel. I get it, but it still would have been nice to get the allergy tests done at the same time I had the environmental ones.

I appreciate all the feedback from everyone and all of the suggestions. I continue to add to my requests and info that I will bring to my next appointment. If he doesn't work with me, I will start shopping for a new doc.

Thanks, everyone. Have a great weekend/holiday!

 

[Wooddy]

Hello Maggie,

It looks to me, like the doctors are ordering the wrong labs because there is nothing wrong with the ones that we were looking at. You had mentioned that your muscles are tight and in knots have you mentioned this to any doctor? Has any doctor ordered a test for CPK enzymes or addressed this complaint? How about your bilirubin, direct vs. indirect?

I gathered from your symptoms that there is definitely something unusual going on but the labs the doctors ordered either indicate that they don't know what they are looking for, or that they or are too jaded to take care of you as they would their own daughter. I don’t want to sound like a cynic but I think that it’s good to be your own advocate, you really have to be if you want answers. I have found a lot of support from this forum as well as a myriad of knowledge that has helped me understand more about medicine and how it relates to actual people.

You had mentioned a number of things but I would like to point out one particular problem that might tie somethings together.

It's interesting that you say your blood sugar has been consistently low at times. I think is warrants further investigation. The ultimate job of your body is to supply you (at the very least your brain) with energy [glucose]. Your body has redundant systems in place to make sure this happens because glucose is its primary source of energy. A dizzying network of interdependent metabolic processes in your body are constantly monitoring, and compensating for any insufficiencies in codependent systems that ultimately lead to glucose control. Metabolically speaking, if there is less glucose in floating around in your blood your body is going to respond differently than if you had high blood glucose levels. This is because your body has different priorities when there is not enough glucose, enough glucose, or even or too much glucose. In other words, if you consistently have lower glucose levels it might make conditions more favorable for certain proteins to function over others which ultimately tip the scale and influence metabolism in one direction over another -- all the while your body is trying to juggle of this and compensate in order to maintain homeostasis. Known as the glucose effect, this process is where everything that is right and wrong with your body begins and ends. Ok well, that’s all I know about that part, so if that was helpful, then great! If not, please fill us in when you get some more answers. It gets pretty complicated after that, and more information is needed to proceed. My opinion/advice is to keep looking for a new doctor until you can trust one that cares for you and is supportive.

I wish I would have known about this forum a long time ago, I just joined a few months ago. I don’t want to come off like the mayor but everyone has made me feel so welcome here, I feel as if this forum is home. I hope you will find the support you need here as well as find some answers about how to deal with your issues. This is not only a great place to vent your frustrations, but it’s also a good place to be silly with people that are struggling through similar challenges. Good luck, and welcome to the forum from one of the new dogs!

 

[David]

Maggie,

It's amazing how often vitamin and mineral deficiencies aren't tested for.

Aussie (they really know their stuff) provided a lot of great info and makes me lean towards Crohn's even more. They bring up a great point of requesting fecal calprotectin if you haven't had it done.