Anyone with Crohn's?

[VinhThiMom]

I'm so confused. I was diagnosed in 2003 with Crohn's disease. It was a classic case and ulcerations and bleeding all in my ileum (end of small/beginning of large intestines). Biopsy confirmed it. I was on medication for about 6 months then slowly started weaning off. I've been med-free and in remission for 6 years.

Until 3 weeks ago. I started having the symptoms again (mainly, diarrhea-2-6x/day, every single day). The pain started about a week ago and got fairly constant the past few days. I've been nauseous and not eating much, but what I do eat (no matter what it is) goes straight through me.

I had a colonoscopy today (yeah, last night's prep was fun :twitch:) and it showed NO sign of Crohn's. They can see the ileum with a scope, so if it's there, it's microscopic this time. They took several biopsies to check for that. It could also have moved to my small intestines, which they can't see with a scope.

Now my GI thinks it may just be IBS. Is it normal with IBS to have diarrhea that consistently (no matter WHAT I eat) and often, with no 'normal' days? And to be tired all the time, nauseous, losing weight (I'm TRYING to lose weight, but 15 pounds in 3 weeks is faster than normal), hair coming out by the handfuls? Does it sound like IBS? There are other tests they can do (small-bowel follow-through with barium, CT scan, pill cam) but they can be costly.

If the biopsies come back normal, should I just accept that it's IBS and deal with it? IF it's Crohn's, it will only get worse without medication and could lead to bowel resections, hospitalizations, etc. But if it's just IBS, i don't want to spend hundreds or thousands in copays for all these tests (today alone was $200 and I'm sure I'll get more bills from the lab from all those biopsies).

Basically, has anyone with IBS had it this severe/constant? Has anyone with Crohn's had it this 'mild' and no visual sign of it?

[cammiesue]

I have crohn's but I've always had visual signs when I've been having symptoms - so I can't really help you.

[Picklesnapper]

Oh goodness, I'm sorry. I don't have any advice. Just didn't want to read and not post at least a :hugs: I hope you get it figured out soon!

[addiesmommy]

I've had both diagnosis....Crohn's and IBS. Crohn's being the most recent. The whole thing is so completely frustrating. I get a different diagnosis after every colonoscopy. I've taken meds and not. I don't notice that much difference. The only thing that makes any difference is watching my diet and knowing my trigger foods.

BTW, I think I'm the only person in the history of Crohn's that doesn't lose weight. Sucks.

[z&c'smom]

:hugs: I do'nt have either but my sister recently was diagnosed with IBS. For her, it was horrendous (sp?) stomach pain and diarrhea for days, like you said, everything would go right through her and severe nausea and then she would be ok for a couple of days and then she wouldn't have a BM for days (causing more pain and nausea. It would usually start right after she ate something. The pain was so bad for her she went to the ER on more than on occasion before she was diagnosed.

Anyway, if you think it may be IBS, I would do a total elimination diet for at least a month. It's also called the caveman diet (you can find tons of info online about what you should avoid eating). My sister has done this and all of her symptoms are gone. She found out she is sensitive to, diary, soy (ALL soy, so anything with soy lectithin in it, she can't eat), shellfish, wheat and is severly allergic to nuts (which we have known since she was little). She said it's not hard to avoid those foods when she knows what they do to her though.

Good luck! :hugs: PM me if you have any questions!

[cammiesue]

I've had both diagnosis....Crohn's and IBS. Crohn's being the most recent. The whole thing is so completely frustrating. I get a different diagnosis after every colonoscopy. I've taken meds and not. I don't notice that much difference. The only thing that makes any difference is watching my diet and knowing my trigger foods.

BTW, I think I'm the only person in the history of Crohn's that doesn't lose weight. Sucks.

Nope me too - although my weight gain is probably more due to hormones then anything, and that I can't eat many raw veggies or anything with to much fiber - but junk food doesn't bother me at all.

[VinhThiMom]

Laura-I didn't lose weight the first time. When the crohn's is in the large intestines, most of the nutrients are absorbed in the small, so it doesn't affect nutrition. Only when the crohn's is in the small is when you lose weight. And I just had a lightbulb moment. I'm losing weight this time, so maybe it IS in my small.

Courtney-thanks. I'm sorry for your sister, but it's good to know someone else suffers from IBS like I do, if that's what it is. I've heard of SCD (specific carbohydrate diet) working well for lots of crohnies, so I may give that a shot. I know in my last flare, all I could eat was pasta. Combine that with steroids, and poof-90 pounds gained in 11 months. I've been working on losing it and hired a personal trainer and nutritionist who put me on an all-protein diet. Protein is harder to digest, and I think that's what triggered it. I've been off that for a week, but still losing weight and still sick. I may try the elimination diet, though. It's worth a shot!

[formunkyfrommommy]

my sil has it really bad and has for 12 years...seems like all the pain she had they couldnt contribute to chrohns but it sounds like yours.....she is losing her hair too....almost completely bald:(.....they went on and on that it wasnt the crohns that there was something else and it turns out after a second opinion that it was crohns flare-up related and she had to have immediate surgery to remove parts of her lower intestine.....personally i would say see a specialist or get a second opinion because crohns and auto immune issues can accompany a myriad of symptoms and problems

[VinhThiMom]

Cammie-exactly. The bad foods are fine-but raw veggies and high fiber stuff hurts! I had zucchini for dinner tonight, but cooked it until it was soggy. I'm still in pain, though. Nothing seems to sit well with me anymore. *sigh
~~~~~~~
Jessica-I've heard so many stories like that. People go so long undiagnosed and end up with bowel resections. I think I heard somewhere that 80% of crohn's patients end up with at least one bowel resection at some point. Terrifies me. Not as much as prednisone, though. I would take surgery over that.
~~~~~~~
Oh, and I've had on-and-off joint pain over the past 3 weeks, which is a common extra-intestinal symptom of Crohn's (just my hips, though). I'm just worried it's going to go on too long and get past the point of no return. :(

[formunkyfrommommy]

it was after they knew she had crohns....just last year actually....i think a lot of the time with crohns regular dr's dont know much and they dont know how many symptoms it can encompass unfortunately....her dr made her feel like a hypochondriac....then low and behold she had to have surgery

[ouchienurse]

I had pretty severe IBS pretty much my whole life, even as a kid. I tried everything and nothing worked. I finally got the books "eat right for your blood type" and "live right for you blood type" I started the diet and was almost immediatley better. I still have touble if I get stressed or have another illness going on but for the most part I am fine.

[VinhThiMom]

Well, the biopsies came back positive for crohn's, so I started on apriso and dicyclomine yesterday. Hopefully they will get it under control soon.

[Ms.Maggie]

I have crohns, and have been on a crap ton of meds, from roids to chemo.
Let me know if you ever want to chat. PM me I also have yahoo and AIM
I am open about everything so if you need open and honest chat let me know.
Hugs Mama


(this is for anyone with poop issues who needs or wants a chat)

[bearista]

The other symptoms you are describing sounds like a Thyroid problem (hair shedding, joint pain, weight concerns (either way), indigestion, fatigue.

Even though you know Crohns is an issue for you, I think it would be worth having your Thyroid checked :hugs: :hugs:

[cammiesue]

Well, the biopsies came back positive for crohn's, so I started on apriso and dicyclomine yesterday. Hopefully they will get it under control soon.

sorry you had a flare up, but glad you know what it is. Hopefully the meds will help!

I have been on prendisone - not so bad really.
~~~~~~~
oh the prendisone comment was in referance to an earlier post you made :)

[CynthiaRose]

I have Crohn's. I refuse to take the meds though as they make me feel ill and I am breastfeeding and don't want to risk it. I find that stress really makes the symptoms worse. I have only had the 1 colonoscopy I was supposed to have one after having Crimson but chose not to.

[addiesmommy]

I have Crohn's. I refuse to take the meds though as they make me feel ill and I am breastfeeding and don't want to risk it. I find that stress really makes the symptoms worse. I have only had the 1 colonoscopy I was supposed to have one after having Crimson but chose not to.

I completely agree. I'm having a bad flare up right now and it's because im totally stressed out. :sigh:

[eapoosmama]

I don't have Crohn's and have had that confirmed by the heads of Gastro from two major facilities here in Pittsburgh Along with 2 surgeons. Thank God.

However I have the wicked sister Ulcerative Colitis. Let me note that UC is only in the Large Intestines and you can lose weight very quickly with it being only in the intestines too.

I would have the complete Thyroid panel checked also, not just the TSH.

If I recall all of my small bowel followthroughs were about the same cost as all my colonoscopy and Ileoscopy's.

I had UC for 18 months -- stress was a huge factor to my critical emergency surgery. I was in the hosptial being treated with IV steroids and I began to bleed out. I lost my large bowel and had a Ileoanal Anastomosis J Pouch constructed.

I also had an ileous and a bowel obstruction and had to be resectioned again.

Being Sectioned is a major surgery, but it is not nearly as bad as a total Colectomy and reconstruction. Careful what you wish for -- it is not a 1st choice, but definitely a last course of action surgery. My recovery time was 9 months. My quality of life is better.

I will also note that someone else here has taken a lead in their disease by food choices. I don't think I can express my happiness about this.

I started working with acupuncture for IBS/Crohn's/UC and for me recently Pouchitis.
Working with the Dr. I also began to make huge shifts in my diet. NOONE of all my mainstream medical Drs. ever told me about goat milk -- only my Chinese Med Dr.
If I could offer one suggestion. Loose your Cow milk diet completely. There are many many other choices out their available Hemp, Rice, Almond, Cashew, Goat, Sheep Milk products. Soy is iffy for several reasons and I would not use it as a complete substitution. Cows milk has a much bigger fat molecular structure and is very hard on the human gut. Goats milk is smaller fat molecule and easier for people to digest. It opened up a whole new world of options for me.
PROBIOTICS -- balancing your gut is going to offer you relief. I take 20-40 Billion Probiotics per day. I take www.megafoods.com (http://www.megafoods.com) brand and the item is called www.megaflora.com (http://www.megaflora.com). It is not cheap but it helps my intestines greatly. Taking at night is the best as it allows it to work while the gut in more in a resting mode. Dont forget your PREBIOTIC foods. ie: Bananas, oatmeal, granola in your yogurt. You can goole prebiotic foods to get a better idea how simple foods how balance the gut.
If you can eat mushrooms -- there are several varieties that are very supporting to the autoimmune system. I eat Shitake. I also Drink Dandelion Root in tea to help support my autoimmune system as well as treat my ovarian cysts and help my kidney function for osteopenia another disorder you should be in the know about since you have Crohn's. My disorder and mal absorbtion issues has decreased my bone density greatly that I am not on a preventative level to keep it from progressing.

Stress is the first things that needs be lightened though if your to feel better and heal to a better place -- its a must, if ignored it can get much worse than you are now.

There are many alternative treatments to help along the way. I don't necessarily use them exclusively as I am not willing to let an infection get ahead of me but I do work natural approaches really hard in my diet, treatments with the acupuncture and at least three times a month at the Chiropractor -- it all keeps me out of the hospital and off the antibiotics and or worse.

Just some thoughts and experiences.

Start your google searches -- you have much more control in this disease than you realize. Good luck.
~~~~~~~
I don't have Crohn's and have had that confirmed by the heads of Gastro from two major facilities here in Pittsburgh Along with 2 surgeons. Thank God.

However I have the wicked sister Ulcerative Colitis. Let me note that UC is only in the Large Intestines and you can lose weight very quickly with it being only in the intestines too.

I would have the complete Thyroid panel checked also, not just the TSH.

If I recall all of my small bowel followthroughs were about the same cost as all my colonoscopy and Ileoscopy's.

I had UC for 18 months -- stress was a huge factor to my critical emergency surgery. I was in the hosptial being treated with IV steroids and I began to bleed out. I lost my large bowel and had a Ileoanal Anastomosis J Pouch constructed.

I also had an ileous and a bowel obstruction and had to be resectioned again.

Being Sectioned is a major surgery, but it is not nearly as bad as a total Colectomy and reconstruction. Careful what you wish for -- it is not a 1st choice, but definitely a last course of action surgery. My recovery time was 9 months. My quality of life is better.

I will also note that someone else here has taken a lead in their disease by food choices. I don't think I can express my happiness about this.

I started working with acupuncture for IBS/Crohn's/UC and for me recently Pouchitis.
Working with the Dr. I also began to make huge shifts in my diet. NOONE of all my mainstream medical Drs. ever told me about goat milk -- only my Chinese Med Dr.
If I could offer one suggestion. Loose your Cow milk diet completely. There are many many other choices out their available Hemp, Rice, Almond, Cashew, Goat, Sheep Milk products. Soy is iffy for several reasons and I would not use it as a complete substitution. Cows milk has a much bigger fat molecular structure and is very hard on the human gut. Goats milk is smaller fat molecule and easier for people to digest. It opened up a whole new world of options for me.
PROBIOTICS -- balancing your gut is going to offer you relief. I take 20-40 Billion Probiotics per day. I take www.megafoods.com (http://www.megafoods.com) brand and the item is called www.megaflora.com (http://www.megaflora.com). It is not cheap but it helps my intestines greatly. Taking at night is the best as it allows it to work while the gut in more in a resting mode. Dont forget your PREBIOTIC foods. ie: Bananas, oatmeal, granola in your yogurt. You can goole prebiotic foods to get a better idea how simple foods how balance the gut.
If you can eat mushrooms -- there are several varieties that are very supporting to the autoimmune system. I eat ~POOP~ake. I also Drink Dandelion Root in tea to help support my autoimmune system as well as treat my ovarian cysts and help my kidney function for osteopenia another disorder you should be in the know about since you have Crohn's. My disorder and mal absorbtion issues has decreased my bone density greatly that I am not on a preventative level to keep it from progressing.

Stress is the first things that needs be lightened though if your to feel better and heal to a better place -- its a must, if ignored it can get much worse than you are now.

There are many alternative treatments to help along the way. I don't necessarily use them exclusively as I am not willing to let an infection get ahead of me but I do work natural approaches really hard in my diet, treatments with the acupuncture and at least three times a month at the Chiropractor -- it all keeps me out of the hospital and off the antibiotics and or worse.

Just some thoughts and experiences.

Start your google searches -- you have much more control in this disease than you realize. Good luck.

oh, and Lavender I drink Lavender and Yarrow in my tea. For auto immune as well as Lavender is a natural antibiotic for the intestines and helps it heal.

[jenniferjunniper]

I don't have Crohn's and have had that confirmed by the heads of Gastro from two major facilities here in Pittsburgh Along with 2 surgeons. Thank God.

However I have the wicked sister Ulcerative Colitis. Let me note that UC is only in the Large Intestines and you can lose weight very quickly with it being only in the intestines too.

I would have the complete Thyroid panel checked also, not just the TSH.

If I recall all of my small bowel followthroughs were about the same cost as all my colonoscopy and Ileoscopy's.

I had UC for 18 months -- stress was a huge factor to my critical emergency surgery. I was in the hosptial being treated with IV steroids and I began to bleed out. I lost my large bowel and had a Ileoanal Anastomosis J Pouch constructed.

I also had an ileous and a bowel obstruction and had to be resectioned again.

Being Sectioned is a major surgery, but it is not nearly as bad as a total Colectomy and reconstruction. Careful what you wish for -- it is not a 1st choice, but definitely a last course of action surgery. My recovery time was 9 months. My quality of life is better.

I will also note that someone else here has taken a lead in their disease by food choices. I don't think I can express my happiness about this.

I started working with acupuncture for IBS/Crohn's/UC and for me recently Pouchitis.
Working with the Dr. I also began to make huge shifts in my diet. NOONE of all my mainstream medical Drs. ever told me about goat milk -- only my Chinese Med Dr.
If I could offer one suggestion. Loose your Cow milk diet completely. There are many many other choices out their available Hemp, Rice, Almond, Cashew, Goat, Sheep Milk products. Soy is iffy for several reasons and I would not use it as a complete substitution. Cows milk has a much bigger fat molecular structure and is very hard on the human gut. Goats milk is smaller fat molecule and easier for people to digest. It opened up a whole new world of options for me.
PROBIOTICS -- balancing your gut is going to offer you relief. I take 20-40 Billion Probiotics per day. I take www.megafoods.com (http://www.megafoods.com) brand and the item is called www.megaflora.com (http://www.megaflora.com). It is not cheap but it helps my intestines greatly. Taking at night is the best as it allows it to work while the gut in more in a resting mode. Dont forget your PREBIOTIC foods. ie: Bananas, oatmeal, granola in your yogurt. You can goole prebiotic foods to get a better idea how simple foods how balance the gut.
If you can eat mushrooms -- there are several varieties that are very supporting to the autoimmune system. I eat ~POOP~ake. I also Drink Dandelion Root in tea to help support my autoimmune system as well as treat my ovarian cysts and help my kidney function for osteopenia another disorder you should be in the know about since you have Crohn's. My disorder and mal absorbtion issues has decreased my bone density greatly that I am not on a preventative level to keep it from progressing.

Stress is the first things that needs be lightened though if your to feel better and heal to a better place -- its a must, if ignored it can get much worse than you are now.

There are many alternative treatments to help along the way. I don't necessarily use them exclusively as I am not willing to let an infection get ahead of me but I do work natural approaches really hard in my diet, treatments with the acupuncture and at least three times a month at the Chiropractor -- it all keeps me out of the hospital and off the antibiotics and or worse.

Just some thoughts and experiences.

Start your google searches -- you have much more control in this disease than you realize. Good luck.
~~~~~~~


oh, and Lavender I drink Lavender and Yarrow in my tea. For auto immune as well as Lavender is a natural antibiotic for the intestines and helps it heal.




My DH suffers from UC. He is rarely in remission, and it is frustrating, because the meds he takes, caused azoospermia, and so when we are TTC he has to stop them cold turkey, until we are pregnant which takes us a while. It is difficult. He also lost a lot of weight, he is 6'5" and before he was diagnosed he weighed 160 lbs. He was so skinny. Now with treatment he weighs about 185, which is much better. I will have to talk to him about the goats milk. He is a dairy feind!! But this may help, thanks for sharing.

[eapoosmama]

My DH suffers from UC. He is rarely in remission, and it is frustrating, because the meds he takes, caused azoospermia, and so when we are TTC he has to stop them cold turkey, until we are pregnant which takes us a while. It is difficult. He also lost a lot of weight, he is 6'5" and before he was diagnosed he weighed 160 lbs. He was so skinny. Now with treatment he weighs about 185, which is much better. I will have to talk to him about the goats milk. He is a dairy feind!! But this may help, thanks for sharing.

Your welcome. It takes some getting used to but it has been a pretty good transition for me.
Having UC or Crohn's or Pouchitis, we are all candidates for Osteo disease -- calcium is really important as well as Vit D.