Community Forum

My Story (Nightmare)

 Reply posted for jibim.

Hi JIB.  First of all let me say I was very surprised to read that you were awake for most of your colonoscopy!  Ive had around eight of them over a five year period, and never, never, was I awake to experience a thing.  Thank goodness!

Ive had the 5ASA class drugs, immunosuppresants, prednisone and a couple of other steroid drugs, which most havent worked.  If they did if was for a very short time, as my body adjusted to the medicine, making it impossible for the medicine to work.

Unfortunately, I stay flared up a lot!  Even after my initial surgery my remission lasted only six weeks.  :(  And also, I wholeheartedly agree that stress plays a big factor, at least for me.  And as for food....I eat pretty much whatever I want whenever I want, except for a lot of vegetables (Im an incredibly picky eater).

Since December Ive been through two colonoscopys, an EGD, numerous blood tests, a small bowel follow through (and Im being scheduled for another as of this upcoming Monday- dont you just love insurance companies? 

After that's done I have to get a capsule endoscopy.... I mentioned these just to show how big a part of my time and such are spent trying to get my Crohn's back in remission, and to see where all it is located, for now.

I had surgery back in October of 2003.  I will say its been quite an experience....one I hope my children never experience.  If you ever want to talk I can be reached @:  littlered@cutey.com

Id love to talk to someone else regarding their experiences.  It helps me to feel less alone, and sometimes makes me feel better to share my emotional burden in regards to my Crohns.   How does it make you feel?  And what other questions do you have?  I dont know if I'll be of any help, but I'll do my best.

Hope you have a great week.  :)

 Reply posted for becs8181.

 I too am on Remicade and Imuran and trying to become pregnant again.  I miscarried with the first pregnancy on Remicade and Imuran in May and we are still trying.  It's hard to tell if the miscarriage was due to the meds or nature.  I would like to hear from others who have been on at least Remicade while pregnant.  I have severe Crohn's and my doctor strongly recommends not stopping any treatment.  I was thinking of at least stopping the Remicade.  A few years back I was on Remicade and it began to not work.  After a few surgeries and such, I am back on it again and it seems to be working again.

 Reply posted for Sarah.

 Vitamin B12 is absorbed in the ileum which is frequently affected by Crohns disease.  A pretty good introduction to Vitamin B12 is available at wikipedia : http://en.wikipedia.org/wiki/Vitamin_B12

According to

Replacement therapy for vitamin B12 deficiency: comparison between the sublingual and oral route.

(available at : http://www.pubmedcentral.nih.gov/articlerender.fcgi?tool=pubmed&pubmedid=14616423 )
either sublingual or oral supplements of B12 are effective in correcting B12 deficiencies.

Nasal B12 is available also.

If you have problems with the ileum, you might try the sublingual or nasal.  

Make sure youre getting folic acid,  iron,  calcium,  vitamin D and protein.  Getting it through fresh food is best, but few doctors will object to modest use of store bought supplements.

Most people suffer thinner hair after age 20 or so, so dont panic, especially if your brother is que ball bald at age 30.  Genetics may be destiny, but exercise, eating right and not stressing too much will make you healthier.

 

 Reply posted for dani.

 I just received my 2nd dose of Remicade last week. Basically, you go into out-patient and they set you up in a room and the actual infusion takes about 2 hours. The first one I got I was there for about 4 hours because they explain everything to you and I had a lot of questions also, so I was there longer. Before they start they take vitals and give you benedryl and tylenol - Itchiness and headache are side effects. Then they start the infusion at a low dose and increase it every 15 minutes. I didn't experience any side effects while there, except for being very tired from the bendryl. It went by pretty quickly - I just watched a few episodes of the Golden Girls and Frasier and before I knew it, it's over!

After the first dose, I did get heavy chest pain and nausea when I got home. It lasted about 30 minutes and then went away. I'm starting to get my symptoms ofcolitis back though because I'm down to only 10mg of pred a day as opposed to 60mg which is what i started on. I hope I start to take to the remicade.

Good luck with your daughter!

 Reply posted for jibim.

 If he didnt suddate you to do the colonoscopy then I would find another GI doctor because mine would never ever do that. Thats wrong in so many ways. My first GI doctor told me there was no hope for me and that i was going to have to just live with the pain the rest of my life and at the age of 18 that was not an acceptable answer for me.

 Reply posted for spunkyfiregirl.

 Amen about some docs not understanding. My friend who has chronic fatigue had one who told her it wasn't a real disease, just in her head. Yeah, right. She's only had a bum thyroid for years. Needless to say she dropped that doctor like a hot potato and found a good one.

I never heard of Halflty before. The prep I had to drink tasted like soap, and upset my stomach.  It also came in this huge jug--I had no intention of drinking it all. I'm only 5'3", and didn't weigh more than 110 then. After that I decided I'd only drink what I could manage, and if the doc didn't like it , tough.

Yeah, if one doctor isn't doing you any good, there's better ones out there.

 

 Reply posted for jibim.

  That sounds so horrible!!!

My mother-in-law had a colonoscopy done just weeks before I had mine done... she complained from the bowl-prep, she had to drink some really nasty creaming gunk. Also she said she felt pressure during it but not pain.

So I was a little freaked. My doc said if they found blood in my stools they would have to do a colonoscopy. I told her not to find blood... but that didnt happen. I was cryin... so scared.

I started my bowl-prep, from that point I had better hopes. The kit I used was called Halflty, it tasted like cherry alkaselzer but without the bubbles. I picked Cherry, out of cherry, lime and orange. I really recommend that anyone haveing to have a bowl-prep to request this med... it works great.

Anyway, once they got started, wheeled me in, introduced the doc. I told him to be nice and passed out. I did not feel a thing.

I could be wrong but I seriously think that you need to find another doc.

I have changed doctors. I started with a doctor who I could not understand. My current doctor is so understanding and forward. He told me that the meds I was currently on were not helping and put me on the right meds and has given me hope. On my follow-up appointment I asked about over sleeping and depression.. I thought it might have something to do with my Iron but he checked my blood and said that it was not from that but from stress, which also triggers my IBS so that didnt help me... I feel like I am moving forward and living in less pain and less stress.

I am really sorry you are in so much pain. I know it sucks...I went months in pain before I met my current doc and got on the right track.

 Reply posted for jibim.

 

If the pain doesn't improve really soon, you should go to the hospital, the ER if you think you need to, and ask if you can get another GI doc, or at least a good internist. Don't put it off, if you're in this much pain.  I've been there, I know it's something that should be taken care of quickly.

Your GI doc doesn't sound too good if he gave you a colonoscopy without putting you under before starting. You should definitely find another GI doc, and tell them about how your previous one conducted the colonoscopy. If you need to, there's the "Find Physicians" tab on top of the webpage, it might help you find someone good in your area. If you find someone, don't waste time calling them, and tell them what's going on with you.

But whatever you do, do it soon.  Ask your husband to help if you can't, but just don't wait around.  I hope you'll let me know later how it goes, and I wish you luck.