New member - unsolved mistery of possible Crohn's

Hello to all!

I am new here. So I would like to say hello to all!

I have been reading this forum for a while now.

I have milion of questions to ask. I would appreciate If someone would give me any advice, any comment,
any word. I would be most gratreful for your time!

I came from Europe, but I hope you do not mind If I do not tell anything else. I apologize for some broken
words, english is not my native language.

Short wersion of my experiences with possible Crohn's would be:

I ve been start losing weight in last months of 2009. From 2009 till now I have lost 22 lbs. I'm 5.67 feet (175 cm) tall and now have 137 lbs (62 kg). In my best days I had 160 lbs! Otherwise was always more thin, than well builded.

I have had short period of D in august 2009, and my biggest attact till now in sptember 2009 (one night).
At that night I had stomack spasms, lasting all night. I have been sweatting all night also. No D at that night.

No D otherwise, normal stool mostly, otherwise I am having Consp. sometimes. In stool sometimes I see undigested food, but form time to time. At that time stool is also yellow, not brown. So digestion is poor at that moments?

Procedure for Crohn's began. In short:
Asthma in childhood, (autoimmune???) some depression
- many blood tests: after second attact CRP < 3, leukocytes 14 , other normal, hemoglobin 142
- ultra sound of stomack, everything normal jul 2010
- gastroscopy: bulbitis D2, no bacteria in stomach in aug. 2010
-SBFT: possible narowing in terminal ileum 2 inch long, posible inflamation (?) in okt 2010
- colonoscopy 2x: first time polyp remowed, second 2 samples from terminal ileum: hyperplastic lymphoid follicles (inflamation????),
no visible sign of Crohn's of colon or terminal ileum in jan 2011
- capsule endoscopy everything normal, nonarowing, no inflamation, no ulcers in small intestine in april 2011
- MRI with double contrast: no extra fluid formations, no narrowing, no wall thickening, no inflamation, no fistula, everything normal in jun 2011

Doctors conclusion: NO Crohn's. Attack did not develop since sept. 2010. It's in your head! Aha! https://www.healingwell.com/community/emoticons/rolleyes.gif

BUT:
- I have been loosing weight, sometimes I have spike fever from 98 F to 99 F, I have had a couple of night
sweats. From time to time I feel heat in my body: mostly in heand, scalp and back. Sometimes I have D once or twice,
stool otherwise is normal, digested and colored brown. Sometimes (no food connection) is clay color, undigested food in,
conspitaded, some brown mucus over stool
Until now, knock on wood! no pain, can eat all food, but I do not.

ADDED on sept. 30th, 2011:

....

- for a month or so after first attack had pain in muscles, fatigue, had few mounth sores and once eye inflammation lasting one day. Could all be coincidence or who knows. After I took multivits, things went away.

- Thyroid is normal. Have had lung xray, heart cheched, liver and all internal organs (by blood or ultrasound)

....

- Biggest concern now: huge continous weight lose, spike fevers, Crohn's in back, sillent run?

- Self precaution: Food: no gluten since jun 2011 (gastro said), no milk, some fermented diary, cheese, no sugar, no trans fat, little red meat
: natural medication: Boswellia Serata, 3x 300 /day, spoon of olive oil with bee propolis, 2-3/day, zinc, Q10, vit B,
omega 3 (fish and suplements) vit C 250 mg/1/day, magnesium citrate 300 mg/day, previous vit D3, and E. Fish, white meat, vegetable cooked and some fresh, turkey, chicken, rice, rice cakes, ... More relaxed, but concerned a lot.

What next? Wait like a duck for life to hit into stomack? Natural medicine? Psyho? LDN? Nobody wants to give me blood
tests or genetic tests, nor stool tests.

I would appreciate every word of wisdom. I am grateful in advance! If I would be able to help anyone, with
my readings from net on this diseasse, I will.

Thank you again!

YP9

Post Edited (YP9) : 9/30/2011 4:25:25 AM (GMT-6)

If the doctor says that you do not have IBD (Crohn's or ulcerative colitis), then maybe you have IBS. Soluble fiber such as psyllium or metamucil might help, as well as probiotics. I believe that Lactobacillus acidophilus is for IBS but probably any probiotic will help.

Peppermint oil is famous for calming IBS symptoms. But maybe you don't have IBS. Some of your symptoms are yellow stool and undigested food so that could be anything.

Hi YP9.

I think your doctors are probably right about no Crohn's. Which is great news for you, if they're right!
98F is actually normal, 99 is barely a fever, and stool changes colour for everyone.

You have lost 22 pounds in 2 years? Have you been more active in the last couple of years or changed your diet? Stopped drinking or eating sugary stuff, wheat, fried foods or even McDonalds?

Most people with Crohn's lose weight because they have bouts of diarrhea every day for days or weeks or months at a time, or if they cannot eat much.

If you are having a lot of diarrhea or constipation episodes for days at a time or if you think something is still wrong, then see another doc.

I agree that some members here are quite knowledgeable, but, we're not doctors and diagnosing is against forum rules. Sorry!

Best wishes!

Thank you Roni and gumby44.

Thank you for welcome!

First I apologize, Roni: I wasn't intend to get diagnose from members, I know rules. Just a word of wisdom, opinion, etc.

I have seen best spec. gastro for Crohn's in my country and I have been at 4 doctors, all gastro spec. All of them united: No Crohn's symptoms. I am healthy, then. Well for a month I was on Salofalk. No use. Now everything is blamed to my personality. It is in your head! :)

I do not have D, only sometimes. Yes, 22 pounds is a lot of weight to lose. If you belevie me: this week I lost
4.4 lbs! Yesterday I eat 1000 kcl from liquid medical food (my percaution), which Crohn's patients do, plus
about 6 bananas (500kcl), plate of risota (0.44 lbs/250 kcl), small coocked fish (100 kcl), rice plates, about 200 kcl, some cheese, 100 kcl, well about 2200 kcl together. No use of. Today I'm even lighter! Ups! I am becoming walking skeleton. My god - I can't belive that actually I wrote that ...


Gumby44: You have Crohn's in small intestine, how are you dealing with weight? Do you lose it? I know that if Crohn's is slowing down with medication and there is no D, weight can be put on. How do you maintain weight? Liquid food? Well, narowing - was not exact: wall showed bigger? All other did not show thar. MRI shoud.

My theory: Crohn's of TI in silent run, callories goes for inflamation, small intestine not absorbing nutrients correct.
D is to come or not. Pain and all that later. What do you think?

Thank you both!

Hello!

Tara28, thank you very much for your answer! I appreciate any word.

Yes, I have mucus ocasionaly, with conspitation. Gastro said that is pretty normal to have conspitation and some mucus.

Malabsorbtion, I agree, you seem to be right. It is tough to find out, since no one wants me to have another test. I have just read that average use of callories for internal organs, for body just to functionate is some 1400 to 1600 kcl for person. It depends on many thinghs, well.

Malabsorbtion could be from many things: liver, bile, enzymes or small intestine not absorbing - my theory. It is hard to be a doc to your self. :(

Tara28, thank you!

You pepole are great! And I have sincere wish that we would meet on some other forum and discouss about something else than health problems! You have real and hard health problems.

Have read about Prochymal - hope that it will work out and as soon as possible. Or other drugs that are under end of trial periods. There are however many of them and an decade of TNF blockers is in sunset. Molecule drugs arise, but I do not know what they brings. Less or more side effects? Hope more gentle effect!

Hello, Nanners!

Thank you for welcome!

Have read about you alot. Hope you feel better now since last hosp. stay!

I have eat bananas only yesterday. That much. Digestion now is pretty normal, in last days. But weight lose is terrible!
I also hope it is not Crohn's. But it is sneaky diseasse, as many of you know better than I. So you are right - we can not know. I can't.

Thank you Nanners! We writte down. Wish you all the best if worst comes!

YP9

cindywchrones said...
Flares can come and go..I understand your comment about feeling like a sitting duck waiting for the next flare up...I know there is a lot of talk on here about maintenance drugs if you are just currently out of a flare and do have CD..I was weight loss city before predisone--then 60-70 pounds of weight gain..It sounds like the doctor did prescribe a noninflammatory diet..At my worst, I definetly was suffering from loss of weight and malabsorption. IBS, CD, Celiac, and food allergies all can have symptoms that overlap. I would get a second opinion with all the tests you have had in the past. My main concern before I was diagnosed with CD is that I had cancer so I do understand your fears..Many doctors have different treatment ideas with CD..I agree with Gumby44--your ileuim problems are not normal for IBS..CD is so different from person to person..

Cindy

Hello!

Thank you Cindy for your answer!

You seem to have same problems that I have. Weight lose, some fever and nothing to show about. Yet! My TI is like that: some inflamation seen by overreactive lymphoid folicles, no Crohn's signs yet. Funny is that SBFT showed something in TI within 2 inches - wall getting stronger. But MRI showed nothing! How? Is not MRI better exam, more sophisticated? Or?

I feel your fear, Cindy about cancer! I have same fear as you do! Where is your Crohn's located? Sorry, havent read all of your posts. How do you maintain your diseasse?

And forgot: I have last exam, last paper where gastro said: Everythink OK. In case of another attack, direct to ER to blood exam and ray of abdomen. Funny, isn't it? Unconvincable. But none wants to give me bloodexam now. Or genetic tests. Sigh!

I had seek for 4 opinions! So I am just a sitting duck ... :(

I respect him deeply and a lot. He is top here.

Thank you again!

My history was IBS at 16 then IBD unspecified, to CD in my early thirties..I am 41 now..I got very sick at 33, and I have just been on predisone only the last three years and just started back on Nexium..From 2004-2008, I was on all kinds of medication nothing natural. We moved around with my husband's job so I ended up with different doctors with different philosophies. My current doctor is an autoimmune specialist. My CD was out of control 2004-2008, My CD was in my mouth, esophagus, stomach, and upper small intestines. I had the extras of kidney stones, gall stones, migraines, joint pain, female problems, and auto immune early menopause and gland issues. I was unable to tolerate food from 04-06 very well. I was given all kinds of drugs that I reacted to. I have had some good medical care and some not so good! I am now experimenting with the diet removing Gluten, and my doctor want me to lay off the increase of fruits and veggies I implemented..My disease has been pretty much been undercontrol the last 2-3 years with predisone with a 60-70 weight gain where I was not overweight before. I have had to take a round of flagyl/cipro a few times the last couple years. I recently went into a flare I feel but my doctor seems to think it is more a reaction to what I have been eating and an infection. The thing about CD is you can flare at anytime to any degree. Tests can show different results at different times..Doctors do not just give out this DX without alot of supporting evidence which can be frustrating to people who actually are suffering with this DD..Cindy

Roni said...
YP9, Maybe you should get your thyroid checked. It can affect weight, bowel function, sweating, hormones, etc.

Hello!

I forgot to mention some tests, It remember now. My thyroid is normal. I wish that would be the asnwer, truly and hopefuly, Roni! Checked by blood, and was normal.

cindywchrones said...
My history was IBS at 16 then IBD unspecified, to CD in my early thirties..I am 41 now..I got very sick at 33, and I have just been on predisone only the last three years and just started back on Nexium..From 2004-2008, I was on all kinds of medication nothing natural. We moved around with my husband's job so I ended up with different doctors with different philosophies. My current doctor is an autoimmune specialist. My CD was out of control 2004-2008, My CD was in my mouth, esophagus, stomach, and upper small intestines. I had the extras of kidney stones, gall stones, migraines, joint pain, female problems, and auto immune early menopause and gland issues. I was unable to tolerate food from 04-06 very well. I was given all kinds of drugs that I reacted to. I have had some good medical care and some not so good! I am now experimenting with the diet removing Gluten, and my doctor want me to lay off the increase of fruits and veggies I implemented..My disease has been pretty much been undercontrol the last 2-3 years with predisone with a 60-70 weight gain where I was not overweight before. I have had to take a round of flagyl/cipro a few times the last couple years. I recently went into a flare I feel but my doctor seems to think it is more a reaction to what I have been eating and an infection. The thing about CD is you can flare at anytime to any degree. Tests can show different results at different times..Doctors do not just give out this DX without alot of supporting evidence which can be frustrating to people who actually are suffering with this DD..Cindy

Hello!

Thank you for your story!

My first answer is: How in the world could you coped with all that? Survived? Find a light in all of that? Your sentences scared me and I just now think: It could not happen to me. Sometimes I got to low point of my mood thinking what in the world can happen to a man, to me, to anyone. I still do not even belive that I am on this forum writting about my problems - that I actualy live that. crap!

I removed gluten in may this year. And milk, just some cheese, fermented stuff.

I totally agree with you. A lot of evidence is needed. I have tried myself. I know if I have this C, I can flare any time.
It is hard to write, hard to live with. I do not have any idea how it would be.

Do you drink milk? Ever been to liquid diet? LDN?

I hope your better contition will last. Write you!

Thank you for your answer!

I'm on remicade every 8 weeks, Pentasa 2 grams/day, omeprazole for GERD...I was on azathioprine for a year and a half and eventually replaced that with the remicade. Remicade is the only med I think that has kept me relatively stable for the past year and a half. At around 5-6 weeks I notice sores in my mouth and throat and more tummy probs; if I'm late getting the infusion (remicade), by a week or so, I'm pretty miserable.
'You are nowhere near needing Remicade, but that's just my regimen as of now. Earlier in my disease I was on tons more meds just to figure out what would work. Anyway, I'm a registered nurse as well, if there's anything i can help with, just ask!

jenngrl81 said...
I'm on remicade every 8 weeks, Pentasa 2 grams/day, omeprazole for GERD...I was on azathioprine for a year and a half and eventually replaced that with the remicade. Remicade is the only med I think that has kept me relatively stable for the past year and a half. At around 5-6 weeks I notice sores in my mouth and throat and more tummy probs; if I'm late getting the infusion (remicade), by a week or so, I'm pretty miserable.
'You are nowhere near needing Remicade, but that's just my regimen as of now. Earlier in my disease I was on tons more meds just to figure out what would work. Anyway, I'm a registered nurse as well, if there's anything i can help with, just ask!

Hello!

First thank you for answer. I am glad you are trained nurse and I will ask you thinghs and be very glad for your support. Probably best on private, since no medical advice here is alowed.

I am sorry you have this diseasse and we could talk about something else. Do you work? I mean how do you work if you are so ill at 5, 6 week?

Have you ever tried LDN? As for now I personally think that is one of best medicines to balance immune system. If it works. I was considering to try by myself. Problem is i cant fint doctor po perscribe it. Internet and overcounter things I do not trust.

What do you think about LDN? And thought that Remicade and other bio drugs should be first against Crohn's.

Thank you!

So sorry you are having such trouble...since I wasn't diagnosed by blood tests, I know there's several threads on here dedicated to blood tests that help identify Crohn's markers. A sed rate is a very general/generic test that determines if there's inflammation somewhere in the body. Mine was very high; also, if there's internal bleeding, your RBC's and iron level would be low. Give that thread a look....it's helpful.