Struggling to get treatment

[Tamesis]

Hi everyone,
I am a 27 year old female, living in B.C., Canada.

I have been suffering with constant abdominal pain for the past three months, to the point that i am unable to work. The best way i can explain my pain is that it feels as though my insides are swollen beyond belief, and at times i worry my stomach may explode. I am constantly nauseated, and am also experiencing pretty bad reflux. My stools go between liquid and rock hard, and seem to be very thin. I am having trouble sleeping, and often wake up in the middle of the night drenched in sweat, although do not appear to have a fever.

My family physician has done ultrasounds, and tested me for an ulcer, blood tests, all of which i am told have come back normal. I see a gastroenterologist on Monday, but feel that if he does not have any idea of what is wrong i might lose it. I have been started on antidepressants because i am simply not coping with my situation well at all (i was married a month before all this started...It has not been the newlywed bliss we expected.) I have also been taking Tylenol3's for pain, along with gravol for the nausea, probiotics, a multivitamin, and nexium for the reflux. I have been to the emergency room many times with uncontrolled pain, which the treat with morphine and send me on my way. the most recent time, i was given an abdominal CT, which i have not yet gotten results from.

Anyways, i guess i'm just looking for some support, and maybe suggestions on things to ask the Dr. on Monday, and if my symptoms seem to fall in with anyone elses. I have a strong family history of bowel problems, my mother has Crohns and my grandmother has Ulceritive Colitis, and i truly feel that it is something along those lines. I am also very fearful that i will be told it is IBS and i just have to learn to live with it. Any coping strategies would be greatly appretiated.

Thanks for letting me vent,
Pam

:depressed:

 

[Peaches]

:welcome: Tamesis!!! I was diagnosed about a year and a half after I was married - so I understand the stress and strain that can cause. I'm sorry you are having to go through that!

Somehow I just have every confidence that if your GI you have been referred to is good - they will find out what your issues are and help you get them going in the right direction. Seeing that you have this family history - you may indeed have an IBD. It may take a colonoscopy and a few other tests to get it settled for you, but hopefully they can do this quickly and get you some real relief.

It is super important to try and reduce your stress. I'm sure you are having lots of that right now - but try and reduce it as much as possible as this may help your symptoms. And if you are diagnosed with an IBD - ask your GI if it would be possible to get a consult with a dietician. You can also search the food section here on the forum and get lots of good information as well.

In the meantime - maybe give your tummy a break and try to do low residue foods or maybe Ensure or Boost for a few days and see if that helps with your symptoms at all. So sorry you are having this struggle - let us know if you have any more questions and good luck on Monday!

 

[Crohn's 35]

Hi Pam, I too am from Canada, northern Ontario. My family also has a history of IBS and most of my siblings have some form of it. I do understand your frustrations and I have had all the symptoms you have had. I was baffling all the doctors in the clinic because I wasnt the typical "IBS" symptoms. White counts w up but no fever, then fever but normal white count. Many tests and the only way I got fully dx after a year of hell and 40 lbs loss, was a scope from the mouth to the intestine with a barium follow through. The narrowing was pretty severe and that is what causes pain. I would hope your Gi will schedule a Colonscopy asap. Write down all your symptoms, and tell him or her of your bm's they tell the story. I do not bleed so it was a hard dx. Tell help with the pain until your appt, I would drink ensure and give your bowels a rest and could reduce the pain.

Please let us know what happens after your Gi appt, welcome to the forum, you will get lots of help here and glad you found us, a whopper of information here!

Hang in there!

 

[shazamataz]

Welcome Pam! Sounds like a rough road right now. Just keep pushing until you get some answers and treatment. Seems quite likely that it may be IBD if it runs in the family - silly question but do the doctors know this?

 

[Tamesis]

Thank you so much everyone for your support. in a sense, it's nice to know there are others that have experienced the same trouble getting treatment. My doctor does know that there is IBD in the family, but because my blood work is all normal, he thinks it is IBS. don't get me wrong, i don't want to have one of these diseases, however there is very littlel treatment for IBS, we've already tried them, and obviously what's going on here is not going away on it's own.

 

[Pirate]

Tamesis, there are a lot of us out here and we all have gone through this scenerio before getting DX. It is very frustrating not knowing, but remember that whatever it is they will find it. In the mean time just hang around with us old Crohnies and we'll teach ya a thing or two. Just beware cause some of these other old Crohnies have a habit of teaching things that shouldn't be taught to youngsters. LOL

How is your husband handling all this? Let him know that we do have a support section and we as Crohnies can help him be able to help you.

Oh, by the way. Welcome to the forum.

 

[mwb3779]

Welcome to the forums. I truly hope you don't have UC or CD. Once you get scoped they'll have a better idea of what's going on. Sounds like CD but like I said I truly hope it isn't. It took 6 different drs and a 2 week hospital visit to dx me. Good luck with everything.

 

[Tan]

Hi Pam, totally hear where your coming from it can be very frustrating and despressing trying to get answers, hopefully your new GI will work wonders and figure out what is going on. I for one had all the symptoms you are experiencing, its lovely isn't it! I also got vomiting tho on top of the nausea. Blood work doesn't mean much as my bloods have always come back normal my inflammation markers haven't changed even tho they found heaps of ulcers in my small intestines when they preformed a colonoscopy and small bowel study, my doctor said some times that happens. It is hard to see the light at the end of the tunnel when you are so sick I know I just wanted to curl up and die but when my GI finally told me yes you have Crohns this is how we are going to tackle it I just felt like I had won the lotto.. ha..ha.. not because I had be dx with an incurable disease but just felt so good to finally be able to put a label on my illness and to not think well maybe it is all in my head! Good luck and keep us posted on how you go.

 

[Tamesis]

That's exactly what it comes down to....having my symptoms justified. I feel like everyone is judging the fact that i'm not working from a bit of stomach pain....if people have not experienced pain for every minute for three months straight, they can't even begin to understand, i think. I just really want to know what, so we can figure out how to make it better.

I am going to bring my Mom to my appt. next week, reading through some peoples' stories i think that will be a good idea. She has also been through all this, and can really relate to all of my symtoms, and myabe will be able to help me explain things properly.

thanks again for all the support, today is the first day i've felt there's some sort of hope in a long time...i'm so glad i found this place! LOL

 

[D Bergy]

Look into Low Dose Naltrexone as a treatment, if you are found to have UC or some other related intestinal disease.

Several threads here on it already, and when it works, which is most of the time, it can really change things for the better.

A few people here are already using it. I have used it for over two years and have no current symptoms.

http://www.lowdosenaltrexone.org/

Dan