HealingWell
Search Close Search
☰

crohns now? so confused, need help

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/27/2011 12:55 AM (GMT 0)
Hi everyone,

I have been having really bad pains in my stomach, right below my ribs. It was so bad i had to go to the er again. I was admitted and stayed for a few days. I went to my Gi doc today for an endoscopy and the partial colonoscopy. In the hospital i had a c-scan done and it just showed my colitis and nothing more, my labs are all fine. When i was hospitalized in feb i had an endoscopy and colonoscopy done as well, which showed some gastric ulcers and my usual Uc that turned into pancolitis.

Here is where im confused. So my doctor says I believe u have Crohns! We found some stomach ulcers and your uc is still active. He thinks crohns caused me to have these stomach ulcers. But I've had about 4 colonoscopies since 05 and no1 picked up on this? So currently im on the Humira injections for my uc but the box actually says its a crohns kit. They send me home with instructions to take nexium 2x a day, liada and eat carbs!

So now i dont know what to eat or do! I want to do the scd diet because i read alot of people had relief from it. But who do i listen to? what diet to follow? do i have crohns? What am i going to go thru with crohns that i havent gone through already??

some1 please help.

thanks 

Posted 4/27/2011 2:02 AM (GMT 0)
Tats, I'm on the same boat with you. The whole time I thought I had UC. From 13 years old until this past February at 20 years old. I developed a fistula which is usually linked to Crohn's. So it's very common to have your diagnosis changed from UC to Crohn's.

Also, with the Humira injections, it's the same thing. It was marketed for Crohn's, but it's widely used for UC too. That labeling on the box has nothing to do with what you have. The main difference between Crohn's and UC is the parts of the digestive system it affects. UC is strictly confined to the colon. Crohn's on the other hand can affect your digestive system from the mouth all the way to the anus. It really all depends. Then there's Crohn's Colitis which is Crohn's that is confined to the colon, but can produce fistuals and perianal disease. This is what I have.

I know it's not nice to receive news like this. Hopefully the humira will work for you. Best of luck my friend.
Posted 4/27/2011 2:20 AM (GMT 0)
This is what I'm scared of. I was ok with just having uc even some stomach ulcers, but I'm not ok with crohns. What is a fistula? I mean I googled it but I just don't get any of it. How did you know you had/have it? Do u follow a special diet? And to be diagnosed @ age 13 must have been just horrible. What were your symptoms?
Posted 4/27/2011 2:32 AM (GMT 0)
Trust me, you'll know if you have a fistula. They're very painful if they abscess. I doubt you have one. A perianal fistula is a tunnel connected to your anus that goes to a part of your skin near the anus. If you have just some ulceration in the stomach that is considered crohn's. It's not as bad as it sounds though. If your small intestine and your esophagus aren't affected, it won't be much different that UC. The humira should help get it in control.

Well, it certainly wasn't fun being diagnosed at 13 years old. I was deprived of my childhood at times and I've been on so many different medicines. I'm still struggling with it today, but I don't let it take over my life. Yeah, It's not fun, but I'm thankful for the rest of my health. I just keep pushing myself every single day and I keep a smile on my face. I have no option, I can't give up. You'll be alright tats. I know the path seems narrow now, but you'll come out stronger. Hang in there. There's always a solution to a problem. It may not seem like it, but you'll see.
Posted 4/27/2011 2:59 AM (GMT 0)
Thanks Bosnianboy. Ur giving me some hope, and I def need it. I have 2 small children that I haven't been able to take care of an entire week because of the pain. I'm just worried about the future and now. :(, like what else can develop along side crohns.
Posted 4/27/2011 7:50 AM (GMT 0)
Ughhh, I thought I was in the clear with this pain but I guess not :(. The pain is back and now I can't sleep or do anything. Did any1 have this kind of pain right below the ribs?
Posted 4/27/2011 11:35 AM (GMT 0)
Some1 please tell me when this pain will go away.
Posted 4/27/2011 12:57 PM (GMT 0)
I'm definitely not telling you to defy your docs orders, but I will say that my experience with my own GI is that he doesn't know as much as I would like him to. It's my body and if a different diet works better I do it because I know my GI is only human and mainly only knows about drugs and surgeries, not food or natural treatments that work.
Right now I'm having more luck with brief fasting (24 hrs) than anything else, but that's something I don't recommend unless you really know what you're doing because though a 24 hour fast probably wouldn't hurt a normal person it could be different with a crohn's or UC sufferer, I just don't know. Longer fasts can definitely be dangerous so they should be supervised or assisted by someone qualified.
Posted 4/27/2011 1:00 PM (GMT 0)
Yes, my doc def doesn't have a clue! So he is sending me to an ibd specialist. I don't know anything anymore. Like how do u take care of 2 small kids with so much pain? I wish I had a clue.
Posted 4/27/2011 1:11 PM (GMT 0)
I'm also really scared because when I read peoples sigs they have a lot of other things going on. I just want to know if the other problems happened b4 or after being dx with crohns. How did every1 find out they have so and so? And will this eventually happen to every1 with crohns?
Posted 4/27/2011 1:18 PM (GMT 0)
Tats....breathe.....If you have Crohns, much like UC, be assured it is not a death sentence. There will be ups and downs with the disease, but once you find the right treatment things will improve.

If your pain is so severe why not go to the ER and find out whats going on? No need to sit at home and suffer. What you are feeling is probably referred pain, meaning pain coming from another area. I often have pain in the upper right quadrant, but mine hits there because of surgeries I have had. Also, could you possibly be having a gallbladder attack?? Maybe its best if you do go to the ER, better safe than sorry.

I hope you start feeling better soon. Hugs!
Posted 4/27/2011 1:59 PM (GMT 0)
I was just in the er, they admitted me wed and I was discharged saturday. My labs were all fine, the catscan just showed my colitis activity but nothing else. They were just giving me pain killers and anti-nausea and no1 can tell me what's going on or y, or what to do. My doc did the sig and endoscopy and he found some stomach ulcers and my active colitis. So since he doesn't know what else to say, he says I think u might have crohns. "What r the possibilities that u have crohns?". I'm like I don't know your the doctor. They did a scope n colonoscopy in februaury n said I have gastric ulcers n colitis, nothing about crohns. So I'm frustrated, the ibd specialist he recommended doesn't take my insurance. Ughhhhh, I'm hungry, scared to eat, don't know what to do. I keep taking pain killers n they only work for so long. I wish there was a holisitic doctor around me or some kind of miracle worker.
Posted 4/27/2011 2:09 PM (GMT 0)
Tats, if you have Crohn's or UC, the treatments are really the same. From my point of view, getting away from UC and to Crohn's during my early years of IBD simply meant that my risk of colon cancer went down.

If you haven't had a fistula you are likely to never have a fistula. It seems there are two kinds of Crohn's disease activity - some people have fistulizing disease, and some have stricturing disease. I suppose it is possible that if you had a very tight stricture and/or blockage, a fistula could form in anyone. But I think you will find after reading here for a bit that some of us have fistulas and some do not.

I had inflammation in the stomach and esophagus and the best treatment was taking a ppi for a few years. It took a while to get the upper gastric pain to go away. I had to have a balloon dilation of a stricture in my esophagus.
Posted 4/27/2011 2:25 PM (GMT 0)
I'm going to check the report exactly n tell u what n where these ulcers r located.
Posted 4/27/2011 6:27 PM (GMT 0)
So I've officially broken down into tears and just give up. I don't know what else to do.
Posted 4/27/2011 6:50 PM (GMT 0)
tats being diagnosed with Crohns isn't the end of the world. Hun I have lived with this disease for over 36 years. I have 3 grown adult daughters all born after my diagnosis, a wonderful husband, been at the same job for over 21 years.

I tell you this to give you some hope. As I said before, there is life with this disease once you find the right treatment for "you". So hang on, the answers will be provided by your doctor when he gets all the results together.
Posted 4/27/2011 7:00 PM (GMT 0)
Thanks Nanners. It's just so hard, I took a walk with my boyfriend and 3yr old and had to watch them and the rest of the world enjoy any kind of food outside, while I was starving and couldn't eat till I got home to eat some home made chicken soup. I don't know what to eat, I'm afraid if I eat the wrong thing will it cause my crohns to get worse, cause more ulcers, put me back in the hospital? I get my 1yr old back from her grandma today and my 3 year old I got back yesterday. I can hardly keep up. I am confused in what to feed my kids now. I have so many questions and every1 says they r supporting me but when some1 brings home mcds or eats pizza in front of my face I just break down.

I want to live a normal life, but how can I achieve this? What kind of job would hire me, I'm in the hospital at least twice a month for a week.

What do u eat nanners? How did u cope? How do u do it?
Posted 4/27/2011 7:21 PM (GMT 0)
What you eat will not make your ulcers worse, or your inflammation increase, or other bad things. You will eventually figure out what foods give you the least amount of indigestion/gas/bloating. It is the medications you take that control the inflammatory response. Go ahead and eat what you want.  EDITED to say I agree with Nanners about the low residue diet for when you're flaring - simpler foods (low fiber) will make it easier for your inflamed bowel, but it won't get you better.  Medicine does that.

There are many who choose diet controls to help manage their disease. I for one do not do this - I already have a pretty limited diet due to personal choices and cannot imagine trying to restrict it further while feeding my husband and children. Those who live by these diets feel they help. You may decide eventually to make that choice, too, but for now you should relax and simply focus on getting rest and the right medicines and feeling better.
Posted 4/27/2011 7:26 PM (GMT 0)
Well I am currently in remission, but when flaring I followed a low residue diet. You can google the diet and get some food ideas. I now still with a modified low residue diet, and what I mean by that is I still follow the low residue diet, but have added back in some things I now can tolerate. Don't worry you will be able to eat other foods once your flare is under control. Its just rough right now. I would try to stick with things like your homemade chicken soup etc. Just remember easy to chew, easy to digest. By the way, even in remission I can't eat McDonalds. Not sure most of can. Something in McDonalds oil or something just doesn't agree with me.

And don't be so hard on yourself about your kids. Little ones are pretty resiliant. You can rest on the couch and just let them play with their toys or whatever while you watch over them. Or put on a movie if they like those. Or how about laying on the bed with them and reading to them. Within time you will become quite good at entertaining them, even when you don't feel well. We have lots of newer mommies on the forum. May I suggest you make a post for coping strategies with small children. I am sure some of the other mom's will have some good ideas for you to entertain (distract them:). Hugs!
Posted 4/28/2011 12:08 PM (GMT 0)
Thanks ladies. Nanners my children have way too much energy. They r pass the stage of sitting to read, watching a movie, etc.

I woke up @ 3am with this horrible pain and took a percoset and it only helped me for 2 hrs. I'm laying down suffering right now. When will this end. Ughhh so frustrating.
✚ New Topic ✚ Reply