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Feeling alot better!!


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Old 04-03-2006, 01:34 AM   #1
Sharon76
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Feeling alot better!!

Hi, it's me again

Well i just thought i would let people know what ive been doing to control my illness and hopefully it will help others.

Well it is highly likely i have crohns disease, but i have been really ill for the past 9 months as it has been undiagnosed and not treated (still undiagnosed but highly likely it is crohns) therefore crohn sufferers can imagine the pain and state i was in as it was getting worse. I ahve had a flare up that has lasted for 9 motnhs untreated and this is why i have been hospitalised twice with bowel obstructions!!!

Since thursday i decided to try and get on top of this instead of relying on doctors. So i researched crohns and the diet during flare ups and decided to follow it.

I have been eating very little fibre, stayed away from all fruit and veg and red meat, minimised my dairy intake and since ive been doing this my joint aches, fatigue, nauseous, pain, cramping and lack of energy has almost disappeared! I know it isnt the healthiest diet, but according to the research ive been doing during flare ups it is important to avoid these foods and gradually introduce them once it is under control.

Ive been eating fish, white rice, white bread, chicken, no fibre cereal plus other things. I cant believe how much i have been able to eat without pain or without having to go into hospital. It is brilliant!!!!

I am almost at the point of being medically anorexic due to the weight loss caused by this illness and i am alot happier because i know that the weight will come back on now i am managing to control it alot more.

When i was in hospital they were shoving food down me which in fact was making me tens times worse and the pain unbearable, they didnt think to change my diet and because of this i was on morphine for the pain. I have not had to take the opiates for 3 days and it is great!!


Anyway considering the bad health, horrendous pain, useless doctors and severly malnourished i am pleased i have managed to get this far and when i see my doc on the 11th april i can say " sod you i started to get it under control myself "



 
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Old 04-03-2006, 03:08 AM   #2
clill_IU
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Re: Feeling alot better!!

question about your crohn's.......I've been having a lot of stomach problems, but my bowels appear to be working ok...is crohn's still a possibility? If you want to see my symptoms, read the post on functional dyspepsia.

Thanks for any help,

chris

 
Old 04-03-2006, 03:25 AM   #3
Sharon76
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Re: Feeling alot better!!

Hi

Some people with crohn's their bowel can still function almost fine, as what my doc told me. I dont really struggle witht eh bowel problems that come with crohns, i struggle with all the other symptoms.

Really loose stools endless times each day is common with crohns, but like i was told everyone doesnt need to have all the common symptoms of crohns, they can just have some of them.

My main problme started with bouts of severe weight loss for no reason, then i would gain the weight again, but then the stomach problems started with horrendous pain and i started having bowel obstructions and my samll bowel twisting, which apparently can happen if the bowel has narrowed due to crohns.


my classic symptoms started as

weight loss
bit of stomach ache
fatigue
nauseous
low blood pressure
anemia
mood swings
unable to sleep

then the symptoms got worse and more complicated problems started for me, i was hospitalised twice in a period of 8 weeks for 2 weeks in total becuase of it.

My barium enema of the large bowel came back normal, ultrasound was normal, gastrograph follow through came back as my small bowel being very slow and sluggish but the small bowel enema i had is showing up with some narrowing of my small bowel.

Maybe it is worth asking to get your small bowel looked at, have you had blood work done???

 
Old 04-03-2006, 05:45 AM   #4
clill_IU
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Re: Feeling alot better!!

When you say that you were losing weight for no apparent reason, does this mean that you had absolutely no other symptoms like nausea, stomach ache, etc, and just lost weight? I have had weight loss, but I've been very anxious and my stomach has been under a lot of stress, hence the weight loss. also, I can't eat as much.

I don't have intolerable pain, I just have a nagging dull pain in my upper stomach followed with difficulty in swallowing. Also I get frequent sore throats and tinny taste in my mouth....like Gerd.

There are clinics in the country like Envita, that can conclusively tell you if you have Crohn's....I can't believe they had you in the hospital for two weeks, and didn't say anything to you. That must have been awful. I don't know if you suffer from anxiety disorder, but if you do, I would look into this. your mind can completely shut down your digestive system.

As for myself, I think mine are stress related. BUT, I will take your advice and check for anemia and have my small bowel looked at.

 
Old 04-03-2006, 05:53 AM   #5
Angela22F
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Re: Feeling alot better!!

Well I am so glad to hear you are feeling better!!! Congrats!!!! It's about time ! And "sod you" is a nice way to word it, I can think of a better way !!

It's funny how much the little things can make a difference. I wonder what your consultant will say when you told him what a difference a diet change made! hehe! It is not the healthiest diet, but hey, you're feeling better, and once you are better you can re-introduce all the good stuff . Have you heard anymore on surgery?

I actually had a good day yesterday (the first in over a darn year!!!!), I was like, hmmm, maybe I am starting to get better. LOL, yeah right, I feel horrible again this morn.


Angela

 
Old 04-03-2006, 06:05 AM   #6
Sharon76
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Re: Feeling alot better!!

Hi Clil

I was losing weight with no other symptoms, the rest of my problems came after the weight loss had started, at the time i thought " this is great im in my very late twenties and im wearing clothes to fit teenage girls" after having 3 children!!!!! silly i know, but at the time i was pleased, now i just want to put weight on, im now 30 and can wear clothes that fit a 13-14 yr old girl!

Too be honest i have not really suffered from anxiety problems, used to be a complete stresshead as i work for the nhs in the uk, in the medical profession so i was very busy and constantly on the go but then i learnt to control my stress levels.

When you say you struggle swallowing at times, do you ever aspirate????



Hi Angela

Glad you had a good day at least once!!!!! by chance what did you eat the day before you felt good???

The change in diet alone wont help the crohns, if it is that for sure, i will need meds and because my small bowel has narrowed i will need that section removed. But at least i think i may have found something that is helping me abit more than the doctors. Not heard anything yet about surgery, got my appointment next week to officially find out if it is crohns and if i will be having surgery. But i have a strong feeling that the answer will be yes to both of them.

I had a bout of vomiting this morning for some strange reason, felt completely fine, but started vomiting!! And no im not pregnant

 
Old 04-03-2006, 07:30 AM   #7
Angela22F
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Re: Feeling alot better!!

Hi Sharon.... are you sure bout not being pg?? :P lol My fiance relates all my problems to that. I'm like look, I am not am elephant, so therefore I am not pregnant - I would be about 2 years pregnant now! lol what a belly that would be eh? And thats only since he's known me, I have been progressively getting worse for quite a few years now.

Let's see... The day previous too, I never had much to eat really. I had a rice cake with a small amt of peanut butter for breakfast/dinner ( I don't eat breakfast really, but it was my first thing for the day) and for supper I had some plain grilled chicken. I also spent some time outside in the sun with my daughter, just kinda watching her and getting fresh air, which I think honestly helped me alot. Eatting is quite the darn task

So you're doing the low residue/fibre diet? Are you taking any supplements then for fibre? I'm so confused on that. As my doctor is not familiar with fibre benefits/detriments, and the pharmacist does not recommend it, but everyone I talk to (minus those two) talk about how I should be supplementing. I actually bought a supplement, but it says right on the package not to take it if you have IBD - Crohn's or Colitis!

I've stopped researching stuff, my brain is on overload right now. And with my brain fog, it's only causing me more frustration lol. I'm just going to stick with what I have, and keep coming here for support and to help people as I have been helped on here I see my doctor tomorrow, although it is a possibility he will get my results today, so maybe I'll stop in there on my way home and see.

Again, I wish you luck, and am very glad you are feeling better. After almost a year, I think it's only fair At least now you're on the road to recovery, might take awhile longer, but hey we all gotta start somewhere.

Keep us posted

Angela

Last edited by Angela22F; 04-03-2006 at 07:33 AM.

 
Old 04-03-2006, 07:05 PM   #8
itsme0928
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Re: Feeling alot better!!

Quote:
Originally Posted by Sharon76
Hi, it's me again

Well i just thought i would let people know what ive been doing to control my illness and hopefully it will help others.

Well it is highly likely i have crohns disease, but i have been really ill for the past 9 months as it has been undiagnosed and not treated (still undiagnosed but highly likely it is crohns) therefore crohn sufferers can imagine the pain and state i was in as it was getting worse. I ahve had a flare up that has lasted for 9 motnhs untreated and this is why i have been hospitalised twice with bowel obstructions!!!

Since thursday i decided to try and get on top of this instead of relying on doctors. So i researched crohns and the diet during flare ups and decided to follow it.

I have been eating very little fibre, stayed away from all fruit and veg and red meat, minimised my dairy intake and since ive been doing this my joint aches, fatigue, nauseous, pain, cramping and lack of energy has almost disappeared! I know it isnt the healthiest diet, but according to the research ive been doing during flare ups it is important to avoid these foods and gradually introduce them once it is under control.

Ive been eating fish, white rice, white bread, chicken, no fibre cereal plus other things. I cant believe how much i have been able to eat without pain or without having to go into hospital. It is brilliant!!!!

I am almost at the point of being medically anorexic due to the weight loss caused by this illness and i am alot happier because i know that the weight will come back on now i am managing to control it alot more.

When i was in hospital they were shoving food down me which in fact was making me tens times worse and the pain unbearable, they didnt think to change my diet and because of this i was on morphine for the pain. I have not had to take the opiates for 3 days and it is great!!


Anyway considering the bad health, horrendous pain, useless doctors and severly malnourished i am pleased i have managed to get this far and when i see my doc on the 11th april i can say " sod you i started to get it under control myself "


Glad to hear the diet is working for you!

Have you had a Colonoscopy yet? That is how they diagnose Crohns Disease. I know a few people with Crohns, and this is exactly how they were diagnosed.

Good luck to you!

 
Old 04-03-2006, 11:40 PM   #9
Sharon76
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Re: Feeling alot better!!

Hi, thanks

No, no colonoscopy as it is not always needed due to being able to have crohns anywhere from the mouth to the large bowel.

Ive had other tests of my large bowel done and they have all come back fine, its the tests on my small bowel that have come back weird, so it looks like thats where the crohns is in me.

 
Old 04-04-2006, 05:01 PM   #10
itsme0928
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Re: Feeling alot better!!

Quote:
Originally Posted by Sharon76
Hi, thanks

No, no colonoscopy as it is not always needed due to being able to have crohns anywhere from the mouth to the large bowel.

Ive had other tests of my large bowel done and they have all come back fine, its the tests on my small bowel that have come back weird, so it looks like thats where the crohns is in me.
Did you have a small bowel follow through?

 
Old 04-04-2006, 11:49 PM   #11
Sharon76
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Re: Feeling alot better!!

Hi

yes i have had a small bowel follow through plus a gastro graph which is similar to the follow through and my problem is just with my small bowel.

My large bowel is fine, no problems, only have problems with my large bowel when my small bowel stops working

 
Old 04-05-2006, 01:25 AM   #12
itsme0928
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Re: Feeling alot better!!

Quote:
Originally Posted by Sharon76
Hi

yes i have had a small bowel follow through plus a gastro graph which is similar to the follow through and my problem is just with my small bowel.

My large bowel is fine, no problems, only have problems with my large bowel when my small bowel stops working
If you don't mind my asking, what did those tests show?

 
Old 04-05-2006, 01:45 AM   #13
Sharon76
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Re: Feeling alot better!!

I dont mind at all, if it will help others then great or even if it is just out of interest.

The gasto graph was done while i was in hospital with a twisted bowel....... the results of this showed my small bowel was extremely sluggish and a kinda stopping and starting movement instead of a continuos flow. It also showed two dilated loops.

the small bowel follow through showed narrowing of my small bowel close to the ileum and it took 7 hours for the barium to reach that point of my ileum, again due to it being extremely sluggish.

Therefore when it flares up like this i have to go nil by mouth to prevent further pain and complications

Basically the outcome is that my small bowel is not functioning properly and due to previous obstructions and twists it is highly likely due to that part being diseased with crohn's.

 
Old 04-05-2006, 02:00 AM   #14
clill_IU
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Wink Re: Feeling alot better!!

Sharon,

I'm not so sure about Crohn's....you seem to be really bent on it, yet it is extremely rare. Everything that I've read about Crohn's indicates that weight loss only accompanies, either a decrease in appetite or diarrhea...you had neither of these during your weight loss period.

However, if you do have Crohn's, which I hope you do not, you might try reading about some of the newer treatments out there....one involving a parasite called "helminths". Although the research is still preliminary, and I'm not an expert, researchers have found that this little guy has either sent people's crohn's into permanent remission or have greatly reduced the number of flareups. It is not capable of reproducing in the body, but doses of the specimen's eggs over the course of the year have greatly improved people's lives. Something to think about...IF you have Crohn's

We have become a society that is so obsessed with cleanliness, that some believe we are destroying "good" bacteria and parasites. Crohn's, MS, and other autoimmune disorders are practically unheard of in Third World countries, where people's guts have a myriad of parasites and bacteria.

Well, good luck to you. I'm sure you don't have Crohn's

 
Old 04-05-2006, 02:27 AM   #15
Sharon76
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Re: Feeling alot better!!

After researching crohns and from what my consultants have said this is how it is.........

The weight loss started of no accord, then the loss of appetite came and nauseous that ended up with me dry retching half the time

My complete history started with pain on my right side, first thought it was gallbladder problems, came back normal.

then anemia and severe vitamin deficiencies, along with this came pain worse than labour, then came the vomiting, on and off. I started to suffer from raised liver enzymes and low blood pressure, which was connected to the anemia. My small bowel was that badly inflamed it ws putting pressure on my other organs close by, wa put on a course of anti biotics, to try and reduce it and was nil by mouth for 7 days

The pain then started to spread across my abdomen and this is when other complications set in. My small bowel has narrowed, and this has been suggested that the causecould be down to crohns as this is what happens if a person has the disease and it isnt controlled.


And as my doctor said symptoms are just symptoms and everybody reacts differently to them, and it is common for websites to only post the most common forms of symptoms and omit the rarer ones, which makes sense. Not everybody with crohns has to have the same symptoms, not everyone has to have diahera ( spelling ) I have other advance symptoms of which can suggest to crohns that has been badly managed, but i dont post these symptoms as they are too personal and i would rather leave it that way.But some people may be able to have a good guess at these or have knowledge due the experience they have had.

But. all of my problems can be related to crohns if it is left untreated. Which can also lead to being hospitalised, which has what has happened to myself.


There is no other possible explanation for a bowel to twist, this can only happen if a person has had previous abdomen surgery, adhesions as informed by my consultant. At one point it was thought i had a volvus of the bowel but this has now been ruled out. Crohns isnt as rare as it used to be , approximately 1 in 544 people have crohns

I hope it isnt crohns, but going from experience, endless research and hospital appointments its looking highly likely it is. I dont like the idea of having a life long illness


Also the senior contusltant who done my last test, stated that dilated loops were present around the narrowed part near the ileum and this is the most common part to be affected in crohns.

So, it isnt a case of being hell bent on the idea its the fact that i have researched endless bowel disorders, digestive problems and anything else i can think of but this is the only thing i can relate to and some of my consultants.



In previous posts i have not listed all my symptoms as i have only listed symptoms that are relevant at the time so maybe this is what has caused confusion, for example if someone has asked me a question about something i will answer it but not expand fully if it isnt needed, after all we only post what we want to post.

Last edited by Sharon76; 04-05-2006 at 02:51 AM.

 
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