Nervous.... actually, TERRIFIED.

[annie12]

Hello,

Yesterday evening I finally got to see a consultant gastroenterologist about my symptoms over the past 5 months or so.

To give you a little background, in 2007 I was diagnosed with a very rare autoimmune disorder of the thyroid whereby the serum the thyroid sectreted put me in full blown anaphylactic shock on far too many occasions IMO. It took 8 long months to get referred to a consultant immunologist, which then took another 2 years to get it under control (with the use of immunosuppressents - cyclosporin/Neoral) Side effects of the illness and treatment shot me from 197lbs to 273lbs in roughly 10 months. Took another year to get back to 215lbs so I still have a bit to go. A small relapse last year put be back on meds but was weaned off and have been clear since Feb 2011.

Life was going good then til this past summer- blood, bad pain, the feeling of practically defecating myself if i didnt get to a toilet quick enough, made me realise that there was something wrong. Went to my doctor about it in Sept and was referred to a consultant that I was not covered for under my insurance so had to wait another 5 weeks, which brings me to last night.

Went over everything with her and she maintains I more than likely have Crohns colitis and has me booked in for an urgent colonoscopy on Tuesday. I am absolutely terrified. My aunt has just battled bowel cancer and that is what keeps playing through my head. I am hoping it turns out to be nothing but I would think its pretty doubtful at this stage seeing as doc mentioned it makes sense its another auto-immune situation which can often happen if you get one.

I stupidly went looking on the internet today to find out information and ended up crying in fear for half an hour and then I can across this forum. I am hoping I will get real life advice. One of my main concerns is the medication side effects. I am getting married next year and obviously want to have children in the future but the fact I was on high tech meds for so long is reducing my chances of conceiving. Is this going to happen again? I would love any advice and support thats out there.

Thanks

 

[Carrie630]

Try not to be too scared, the colonoscopy usually goes smoothly without pain. (some people do have pain, but the majority do not have pain or anxiety once the drugs go in.) It is common to be diagnosed with more than auto-immune disorder over time. There are quite a few women on this board who have had children while being treated for Crohn's so the diagnosis and drugs are not 100% definitely going to make you infertile. I'm sure you already expected to need to plan baby-making so it shouldn't change much. There are other types of colitis besides Crohn's that you could have as well, not all are auto-immune.

good luck with your colonoscopy!

 

[annie12]

Try not to be too scared, the colonoscopy usually goes smoothly without pain. (some people do have pain, but the majority do not have pain or anxiety once the drugs go in.) It is common to be diagnosed with more than auto-immune disorder over time. There are quite a few women on this board who have had children while being treated for Crohn's so the diagnosis and drugs are not 100% definitely going to make you infertile. I'm sure you already expected to need to plan baby-making so it shouldn't change much. There are other types of colitis besides Crohn's that you could have as well, not all are auto-immune.

good luck with your colonoscopy!

Thanks Carrie630 - I know I am jumping the gun with the nervousness, just can't help it.uke_r: !!

 

[Carrie630]

I totally understand, I was terrified for my upper endoscopy! I think I was more scared for that than I was when I had back surgery.

 

[xJillx]

Hi Annie and welcome! Beware of the internet! When I was first diagnosed, I freaked myself out by reading horror story after horror story. Don't do that to yourself.

If you have Crohn's, hopefully you'll respond well to treatment and your illness will not impact your daily life. There are many forum members who have families, full time jobs, travel, study, etc. Will it be challenging? Yes, at times, it will be. But with good doctors and the right treatment, you should be fine. And try not to stress over the different treatment options. Just take it one step at a time. Right now, focus on your upcoming tests.

Good luck!

 

[Jessi]

Annie, welcome to the family. :hug:

I understand that fear. We all have gone through it. You're not alone. I just wanted to let you know that my colonoscopy was actually very relaxing, thanks to being drugged up. I was happy and loopy. I was completely out during the procedure, and felt no pain afterwards. The only part I didn't like was the prep drink before the scope. Yuck!! But you'll be okay. And we're all here for you.

Keep us posted, and welcome again.

 

[Carrie630]

speaking of prep drinks, I thin miralax is the best if you get a choice.

 

[bjeffrey]

Hi Annie..

Welcome and I agree with the postings before me. A colonoscopy is not a bad procedure and it is a great diagnostic tool. The med they give you...is the best sleep med..you will feel nothing...but a few pings and pangs where they do biopsies of tissues for a diagnosis.

A Great website for Knowledge is National Digestive Diseases
Information Clearinghouse (NDDIC), http://digestive.niddk.nih.gov/ddise...s/crohns/#what

Treatments can be as simple as changing your diet, like i did with Elaine Gottschall who wrote http://www.breakingtheviciouscycle.info/
Her diet changed the course of my disease by putting me in clinical remission.
I have made slight modifications to her diet, although I still prepare 90% of my meals at home. I do my best not to eat any processed foods. What you put in is what you are going to put out. So once or twice a month I fast a day, having only clear liquids. I learned sometimes its best not to make your digestion work and to give it "Bowel Rest".

And if you have to take meds for anything, may i recommend http://www.askapatient.com/rateyourmedicine.asp It is a helpful portal where people write their firsthand comments about meds.

Hang in there, don't very stress..
jeffrey

 

[tinkerbella]

Hi Annie,

Like Jessi, Jill and Carrie have said you're not alone and please try not to worry about the colonoscopy. It's actually really good that you're being investigated, rather than left worrying about what's going on. Hopefully it'll give you a clear diagnosis and with the appropriate treatment you'll soon be feeling better. In terms of treatment yes there are all sorts, each with different severity, obviously it's something you need to discuss with your consultant, but although it might perhaps delay pregnancy (as you shouldn't get pregnant while on some medications, or while unwell), it certainly doesn't mean you won't be able to concieve or carry a baby. I've got two healthy boys after years of medications, including some of the less usual and immuno-suppresants.
I really hope this helps
Angela x

 

[lookame]

Hey. I have also been searching for answers on the front of conceiving. I am about to be 25 on Christmas Day and in my opinon to young to become sterile. My disease is classified as moderatly severe. After a year of battling the symptoms, being on heavy dose steroids then a mix of lialda, 6mp ect we're looking into heavier drugs(remicaid). With that said my GI knows I'd like to be able to conceive and only once has he mentioned that I might have trouble conceiving and that was with a total colectomy(probably because of the scar tissue) so on that front you should be ok. The trouble though is if you have crohns or UC or crohns colitis(mostly referred to as crohns disease located in the colon--its VERY RARE for a person to have both diseases though I know theres is one person on here who does have both) you will be on medicine for the rest of your life. This was a hard adjustment for me considering I hate taking pills of any sort(it's has since been remidied and I take them daily).

The best thing you can do for yourself right now is get used to the fact that you may have a disease and read up as much as you can beforehand. At this stage I feel it'll be difficult to say you won't come out of your colonoscopy without some sort of diagnosis or hint of a diagnosis however with crohns since it is patchy and affects certain areas of the digestive track your biopsies my come back negitive. This doesn;t mean you don;t have it, it may mean that they just biopsied the wrong area. Crohns also has a cobblestoned appearance so if they spot that then it's true crohns.

My biposies and serology 7 blood test came back as crohns disease but has an appearance of UC so my doc has been having trouble actually stating which it is. I often have conflicting statments on the matter as well lol. Good luck

 

[lookame]

BTW the worse part of the colonscopy is the prep. It tastes like sea water so take a big gulp of that then some sprite or other liquid to wash the nasty taste out of your mouth. I had a prep in the hospital which they didn;t allowme to drink anything but water and it made me vomet couldnt get that taste out of my mouth

 

[bjeffrey]

Lookame...

I have both Colitis and Ileitis. Humira is natural made and better accepted by the body than remicade. I tried remicade and the side effects outweighed the benefit so I switched to humira. We have important choices to make regarding the treatment of our disease and not just cause the doctor says so.

I listed some great resources to help, i hopes...

 

[chrisnsteph1022]

Lookame...

I have both Colitis and Ileitis.

That's still Crohn's. It just means it's in your colon and ileum. That's how mine is, too.

 

[annie12]

Thank you everyone.

Last night was a very bad night for me- severe pain and bleeding. I had to go to bed at 7pm but managed to sleep for the first time in weeks for a good 5 hours. Was up again during the night and just made it on time.
Same story this morning. Its just as well the colonoscopy is on Tuesday - at least I will know for sure.

bjeffery- thank you for the link. I would love to be able to control this by diet so will definitely look into this.

 

[bjeffrey]

The colonoscopy prep will CLEAN you out, so when you get home, monitor your diet and notice if there are any discomfort due to the food you are consuming. best wishes.

 

[tinkerbella]

crohns or UC or crohns colitis(mostly referred to as crohns disease located in the colon--its VERY RARE for a person to have both diseases though I know theres is one person on here who does have both

i also have both! x

 

[annie12]

Can I just say for the record - bowel preparation should be a form of torture. I think I am dying!! Vile.

That is all.

 

[crunch]

annie, if it helps - I think the prep was the worst bit for me.. was seriously stressing about it, but the prep WAS the worst bit, that and having a needle in the back of my hand, but I'm not good with needles...

fingers crossed for you tomorrow and as bjeffrey said, keep track of what you eat...