Anyone else like me???

[inpain90]

Hi everyone,

My name is Emmie. i'm 22 years old. I apologise for the long thread but this is basically my story. I guess my aim in joining this forum is to...i don't know really, maybe just see if there are others like me, to obtain re-assurance that i am not just some medical freak show.
I've always had digestive issues as long as i can remember. Been told numerous times as a child that i had IBS on top of the lactose intolerance.
When i turned 12, i was very very ill and it wasn't until i was 15 that the doctors diagnosed me with endometriosis and interstitial cystitis. I had many surgeries and loads of medications. Obviously since they are both chronic illnesses and i never really had any relief.
When i was 19, my symptoms got much worse. the abdominal pain intensified. mainly on my RHS but also on my LHS. I was having diarrhea constantly, constipation, nausea after eating, vomiting usually followed. I lost 10 kgs, i was weak, tired all the time, my joints ached and so did my lower back. i experienced bloating after food, EXTREMELY painful bowel movements, painful passing of gas, muscular aches, migraines, dizziness and such. I am 22 now and my symptoms haven't abaited. i sometimes get 2-3 months of relief before the cycle starts all over again.
I have seen 5 gastroenterologists in the past 3 years. have done extensive tests. but nothing is showing up. my colonoscopy biopsies only showed mild active inflammation with few neutrophils scattered here and there.
I had a laparoscopy, had my inflammed appendix removed. I was told they found scar tissue, mostly on my gallbladder and fluid in my pelvis but all this seems normal to the specialist.
The only lead i have so far is gastroparesis, as i did a pillcam endoscopy and the pillcam remained in my stomach for 5 hours.
I've been told to go on the gastroparesis diet which is only liquid and vegetarian. I'm not minding it so much because eating red meat and chicken and such cause intense pain but it isn't a cure.
Noone is wanting to help me and doctors tend to use the word rare, unheard of around me making me feel like a freak. I've also been told to take anti-depressants...flippin unbelievable
I mean i wouldn't be trying so hard if i didn't really believe there is something not quite right with me. It's affecting so many aspects of my life and i don't know if i should still pursue it. try another specialist or do as they say and wait for something dramatic to happen.

Anyone out there like me??? i'm despairing and about to give up!

 

[Irene3]

Hello and welcome to the forum. Sounds like you've been through a lot. There are many undiagnosed ibd sufferers on here, and a sub forum just for that specifically. I don't personally know of either of the two chronic illnesses you were diagnosed with, or what your gi said he thinks is wrong with you, but no doubt there are many on the forum who have had such diagnosises, if their all ibd related. I personally, would go and see another gi. Getting a second opinion can only benefit you, especially if your other only option, is a liquid diet. Even if its the same diagnosis, at least you will feel that you should diet etc, as is best for whatever diagnosis. I don't know if inflammation is common with these other ibd issues, but crohns is inflammation in the bowel, so for your gi to say its normal to have some inflammation there, sounds strange. Unless it is common with these other diagnosis's. by what I've read on here though, so many people say that with one ibd issue, can come many others. With a variety of symptoms, so maybe ask for a referral to see another gi, have a colonoscopy, keep a food diary to show your gi, listing also no of bm per day, pain symptoms etc, and that may help. Best wishes with everything.

 

[dannysmom]

Hi and welcome. I think you will like the support we get on this forum. My son sounds like you. He has been sick for 4 years now ... fatigue, ab pain, diarrhea, joint pain, etc. ... mild non-specific chronic & active inflammation scattered throughout scopes .... AND his pillcam also remained in his stomach the entire time. A follow up gastic emptying study did come back normal though. Do any medications seem to help you? We have not found any but avoiding most foods and eating lightly helps my son most. (ie grilled chicken, mashed potatoes and carrots). I hope you can get some answers .... I understand how frustrating this must be.

 

[Cat-a-Tonic]

Hi Emmie, welcome. Don't give up - I know it's so frustrating and exhausting but you have to keep fighting. I'm undiagnosed myself and have been ill for 3 years, so I completely understand.

What tests have you had besides colonoscopy and pill cam? Have you had your blood work done recently (CRP, ESR, and vitamin levels)? As for the anti-depressants, what one and what dose were you told to take? Sometimes low doses of certain anti-depressants can help with pain & abdominal cramps. I am on Amitriptyline 25 mg - it only works as an anti-depressant at higher doses, but at doses between 10 and 25 mg it can help with tummy issues and also helps prevent migraines. I used to get migraines regularly and now I only get them rarely since being on Amitriptyline, although admittedly I don't think it's done much of anything for my tummy. So if it was something like that that you were prescribed, give it a chance and see if it helps any. If they gave you the anti-depressant because they think your health problems are all in your head, though, then I personally wouldn't take it and I would let my doctors know how insulting that is.

And no, diet won't "cure" you if it is IBD, as there is no cure. But certain diets have been known to sometimes induce remission - enteral nutrition is one that comes to mind. Others have had good luck with SCD (specific carbohydrate diet) as well. Have a look around the diet section of the forum for more info on those.

Welcome again, and good luck on your diagnostic journey. You're not alone!

 

[Niks]

Hi

My daughter has been through 'gynae problems' at aged 15 and up, had her perfectly healthy appendix out, had 2 keyhole surgeries to look at ovaries, last one showed 'inflamed bowel'. Symptoms died down for a while. She has then at 18 had bleeding. Her colonoscopy showed 'inflamed bowel' She was given Pred suppositories. The bleeding died down, but as soon as these stopped she started bleeding again and had severe abdo pain and some vomiting, which then ended up with her vomiting everything, including fluids (Nov last year).

She has had lost 2 stone in weight. She has had endosopy, attempted barium meal, this didn't go through her system and got stuck in her stomach! Xrays and scans. We have been through, proctitis, colitis and crohn's diagnosis, which has all been taken away and now coeliacs.

She is on a strict gluten free diet and is not getting any better! As soon as her Pred gets below 20mg she becomes very sick again. She has been hospitalised since November 5 times now. Last week she was vomiting blood clots! Her IBD specialist has now said that the pred is not treating any inflamation and to wean right off it. He has given her stronger laxatives as he feels she gets obstructed, causing the sickness.

He has even suggested that 'the thought of food' makes her sick!!!! This is so frustrating, she is in pain constantly, her bloodwork always comes back okay and when on pred all her camera tests come back clear too. She has not eaten anything with gluten in since mid December.

She often vomits within minutes of eating, and she is getting very distressed that no one seems to know what is wrong with her.

She is now 19 and has very similar story!! Thinking of you, I know how horrible this all is and so frustrating.

Take care xxx

 

[Teejay]

Hi everyone,

My name is Emmie. i'm 22 years old. I apologise for the long thread but this is basically my story. I guess my aim in joining this forum is to...i don't know really, maybe just see if there are others like me, to obtain re-assurance that i am not just some medical freak show.
I've always had digestive issues as long as i can remember. Been told numerous times as a child that i had IBS on top of the lactose intolerance.
When i turned 12, i was very very ill and it wasn't until i was 15 that the doctors diagnosed me with endometriosis and interstitial cystitis. I had many surgeries and loads of medications. Obviously since they are both chronic illnesses and i never really had any relief.
When i was 19, my symptoms got much worse. the abdominal pain intensified. mainly on my RHS but also on my LHS. I was having diarrhea constantly, constipation, nausea after eating, vomiting usually followed. I lost 10 kgs, i was weak, tired all the time, my joints ached and so did my lower back. i experienced bloating after food, EXTREMELY painful bowel movements, painful passing of gas, muscular aches, migraines, dizziness and such. I am 22 now and my symptoms haven't abaited. i sometimes get 2-3 months of relief before the cycle starts all over again.
I have seen 5 gastroenterologists in the past 3 years. have done extensive tests. but nothing is showing up. my colonoscopy biopsies only showed mild active inflammation with few neutrophils scattered here and there.
I had a laparoscopy, had my inflammed appendix removed. I was told they found scar tissue, mostly on my gallbladder and fluid in my pelvis but all this seems normal to the specialist.
The only lead i have so far is gastroparesis, as i did a pillcam endoscopy and the pillcam remained in my stomach for 5 hours.
I've been told to go on the gastroparesis diet which is only liquid and vegetarian. I'm not minding it so much because eating red meat and chicken and such cause intense pain but it isn't a cure.
Noone is wanting to help me and doctors tend to use the word rare, unheard of around me making me feel like a freak. I've also been told to take anti-depressants...flippin unbelievable
I mean i wouldn't be trying so hard if i didn't really believe there is something not quite right with me. It's affecting so many aspects of my life and i don't know if i should still pursue it. try another specialist or do as they say and wait for something dramatic to happen.

Anyone out there like me??? i'm despairing and about to give up!

Hi Emmie
So sorry to hear that like me you too are suffering, I have been in constant pain for 11 years now and each year the flare ups get progressivley worse. I have every sympton there is for Crohn's disease but still they will not give me a label. I have had MRI Scans which showed nothing, my barium meal showed a narrowing in the terminal ileum, I have bacterial overgrowth, constant alternating diarohea and constipation, have lost over a stone in weight.

I don't even look like I have a stomach anymore where I am so thin. I had a exploratory laparoscopy in November which apparently showed that I have a very long colon and it has all been pulled to the right hand side of my pelvis. The surgeon and consultant are now talking about removing part of my bowel instead of trying the easier option of Crohn's meds.

This must be one of the hardest things to get diagnosed! Keep trying and don't give up, I am still having to fight 11 years on, I am actually off of work today after having been in so much pain over the weekend, am due to see doctor again this afternoon for what though I do not know.