I AM SO SCARED....................

by Mia
(Queens, New York)

Hello, I am 35 years old and just found out a few weeks ago that I possibly have crohn's disease. After having 8 children and having to deal with Anxiety disorder and Panic attacks (after my father passing away over 10 years ago) I finally felt like I was able to go back to college to get my nursing degree.

I started school over a year ago in the fall and at the same time I started having diareaha. I didnt think to much of it because I thought I was just nervous about going back to school in my 30's and plus like I mentioned I have anxiety. Well, it never stopped and then there were times when there would be blood with the diareah that would sometimes last up to 2 weeks (but it would seem to only happen when I was under a lot of stress). I tried to ignore everything being that I am very scared to find out something is wrong with me. I never had bad stomach pains or fever or anything else for the 1st year (just the constant diareah). Well, these last few months it appeared to be getting worse and I would just live my life around what I was going through. I couldnt eat anything if I was leaving the house because it started getting so bad that as soon as I ate I would have to doing a running dash to the bathroom. I dont even think the food would digest. I started feeling really uncomfortable wearing jeans because it would hurt or feel uncomfortable around the belt area.

Well, Im trying to make a long story short expecially because I have a question. Anyway, I finally went to see a doctor and they ran blood test and stool samples. My blood work looked good and they didnt see parisites (sorry for any mispelled words). Well, a week later I started running a fever. I went to the doctor and they felt a mass on my right lower stomach and sent me over to the emergency room for a CT scan because it was a friday and they didnt think we should wait untill Monday.

While I was in the emergency room drinking contrast for my CT scan I had to unfortunatly witness a man pass away which freaked me out and put me into a full blown anxiety attack. I did the CT scan and the doctor came to me and told me that they needed me to stay because my colon was very inflamed. I was in the hospital on two different antibiotics and Asacol. They didnt let me eat ANYTHING for 9 days and had some stuff going through the IV that was feeding me. I had so many doctors telling me so many different things that my head was spinning. I finally went home after 9 days and they just told me to eat a regular diet (which to me was strange because I hadnt ate in so long). I dont think the inflamation was fully down and I was suprised my doctor told me to eat what ever I want. Well, I wasnt eating to much because I was scared but just this saturday (dec. 22nd) I decided I wanted some fried chicken and french fries from the chinese resturant (which Im not sure if it was a good idea). I was also doing a lot of cleaning and playing with the kids (which is more then I've done in months).

Unfortunatly, that night I started feeling pain in my pelvic area but I thought it was just gas because it was like sharp shooting pains going back and forth. I went to sleep and at 2:57 a.m. woke up running a low fever. That started on Sunday morning and it is now Friday December 28th and I am still running a fever. The highest that I have known it to go to is 100.8 . During the day my temp is about 99.4-100.1 but at night it goes up and nobody will tell me why. I saw my primary care doctor and she doesnt understand and then I went to the GI clinic yesturday where they scheduled me for a colonoscopy for Jan. 23rd. He told me to stay on the Asacol (3 pills 3 times a day) and to discontinue the Flagel because I had been on it for almost a month (but my primary care doctor wanted me to stay on it and these two work together). I am just so confused, scared, and frustrated.

I am so sorry for such a long story but if anyone could tell me if it normal to continue to run a fever because of the inflamation in the colon I would really love to know whats going on. The GI doctor also doesnt want to start any new medications untill after the colonoscopy is done.

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NEW UPDATE-From Mia NEW
by: Anonymous

Hello Everyone,
Wow, I was just reading back at what I wrote from years ago. I wanted to give a update as to what has happened over the years, as much as I can remember. Well, I found out that I defiently have Crohn's Disease. I starting losing so much weight to the point my doctor said my body had no more fat left, I lost 56 pounds and people assumed I was on drugs. I was so weak my legs would shake if I stood up too long. The GI doctors was very against starting me on steroids and kept pushing a medication called Remicaid which is given by IV every 8 weeks. I was so scared that it took me a couple of years and too much weight loss that I prayed and went to see the GI doctors to let them know I was ready to start the medication. It's very expensive so there was some paperwork that had to go through and I believe it took about a month and in the fall of 2010 I received my first loading dose. I remember being so scared that I was having severe anxiety but the nurses was so nice and I made it through that 1st dose with no complications. I remember I was actually starting to feel better that day and as the days went on I couldn't believe I waited so long to start. I believe the 2nd loading dose was in 2 weeks and if I'm correct the 3rd loading dose was 4 weeks after that. I made it through the loading doses and to be honest felt like I had my life back. By the 3rd loading dose I gained 34 pound that was much needed.
Then to make a long story short I found out I was pregnant on Valentine's Day of 2011. I was so scared because I finally felt so much better and didn't know if it was safe to carry a baby while having Crohn's disease and if I would have to stop the Remicaid. After a team of doctors and specialist we spoke to we found out it would be safe to continue with the pregnancy and Remicaid but they would discontinue it at my 7th month of pregnancy and I would start back up after delivery.
Well the pregnancy went awesome and I think I was in full remission. I was eating everything and actually forgot I had Crohn's. I know my husband and I had no more plans of having children since we already had 8 but I feel she saved my life and is such a blessing. She turned out being the biggest baby I had weighing in at almost 8 pounds and I just turned 38 weeks pregnant the day I had her. There was no complications with the pregnancy or the delivery and she is healthy and just turned 3 years old on October 15th and is attending pre school :-).
The only bad thing is pretty much right after delivery and being moved to my room I started using the bathroom more then I wanted or expected and it was a reminder that I did have Crohn's Disease. I had to wait a few weeks after delivery to get my infusion and it wasn't working which was very disappointing. I went to see the GI doctor after the 2nd infusion didn't work and they weighed me and decided they needed to increase the dose because I did gain weight. I'm now up to 800mg every 7 weeks. With the increase I have had to be careful because of my immune system and I've had shingles (a mild case but it was scary), I keep developing rashes under my armpits and the doctor really has no clue what it is. I'm suppose to go see the dermatologist but unfortunately haven't made the appointment yet.
I had a colonoscopy and endoscopy about 8 months ago and it showed some inflammation or scare tissue in the ilium where the Crohn's started and there were some polyps in my stomach that they removed. They did a biopsy all through my colon to check it even though they said everything looked good. Results came back showing some inflammation in the colon and nothing to be concerned about with the polyps in my stomach. They didn't change anything regarding medication and still just on the Remicaid. Oh, and one thing I forgot to mention is before starting the Remicaid in 2010 I found out I had anal Fistula and have had a seton placed there. I believe it was suppose to be removed since its been there since the beginning of 2010 but I don't want it removed because I'm so worried about it building up and having to get it cut open so I have chose to keep it there and it doesn't bother me at all.
One thing that I do notice through this journey is that stress plays a big factor on Crohn's disease.
Well, I just wanted to give my update and hope it can help others because I know when I would research Crohn's disease I would only see such scary stories but someone told me that the people that are feeling good isn't really writing about it on the computer, they are out living their life.
*UPDATE*
by: Mia

Hello

I would just like to start off by once again thanking everyone who has wrote me. I feel I am getting worse and my GI doctor is an idiot. I have lost about 20 pounds in the last few months because almost EVERYTHING I eat makes me have severe diareah (sorry for to much information). It is getting so bad that all I do is drink water and gaterade and not eat. I am so hungry and cant take it anymore. The worse part of it is that things I was eating before that wasnt bothering me is becoming a problem now too. I haven't had any fevers or stomach pains but I get severe diareah when I eat something. I don't know what is going on anymore. I am getting very scared. I am very week and tired from all the diareah. I have children and I still have to cook for them and I feel like Im going to cry because I am so hungry. Im getting so frustrated that I feel like eating a nice big meal and then taking some diareah mediction but Im scared I will only make things worse. Has anyone ever just ate and then took diareah medication to stop the diareah? The doctor gave me a presciption for a diareah medication but he didn't explain to me if I can eat and take it all the time or if it was just for when its bad for no reason. Im also a little scared to take the medication because it says it dries up your system and you have to drink a lot of fluids. I took it one time and slept all day which wasnt a good thing because i have to take care of my kids. I bought some fish oil with omega 3 (300 mg.)from GNC because I read about it helping people but havent started it yet because I dont know how much to take. Does anyone recomend this? If so how much should I take? Thank you for any advice.
Keep your chin up
by: Chris

Hi I've had Crohns for 31 years and a Colostomy I went back to work after 3 months and carried on working with no pain for 16years. My temp does go up and down due to the crohns imflamation I like you thought I couldn't eat certain things but I decided I was going to eat what ever I wanted I love tomatoes, corn, peas even curries if I fancy it i'll eat it. Just 10months ago my Crohns flared up again just had 3 colonoscopies but i'm not giving up the foods I love. Try to keep your chin up.

thickening of the illeum area
by: Anonymous

The thickening sounds like it is in the illeum area which is common for CROHN'S. I just had 18 inches of my colon removed in that area because it had thickened so much from preious inflamation that they were concerned with obstruction. Make sure you keep the inflamation under control to prevent more build up of scar tissue.
*UPDATE*
by: Mia

Hi everyone,

I would like to thank the people that left me a comment. Well, I cancelled my appointment for the colonoscopy (sorry if its spelt wrong) in January but I did finally do it in Feb. and it was not as bad as I thought. The GI doctor told me that he didnt see anything (except for a lot of hemroids, probably from having so many kids). He told me that the thicking on the right side was normal for some people and he didnt think it was crohn's and for me to stop taking the Asacol.

Well, he sent me for another test (almost like the upper GI series but it foucused just on the small bowel where it meets the large bowel). Unfortunally, that test showed a thicking in the area where the small bowl meet the large bowel. He told me to go back on the Asacol and he wanted it repeated in a couple of months, which will be next month.

I am so confused and frustrated at this point because the GI doctor really doesnt like for anyone to ask questions and basically to just listen closely to what he says. It is the 3rd time I have swithched doctors and I really hate to start over again. I just dont understand how after the colonoscopy he said he doesnt see any sign's of crohn's and then after the small bowel series he tell me to go back on the Asacol and he thinks its a very mild case of crohn's. I'm still worried about the thicking in my large bowel that he said was normal before doing the small bowel test.

The only medication he has me on is Asacol and I guess Im o.k. with it but it sure makes me have a lot of gas when I take it. I still have very soft bowel movements. I havent had a formed one in so long that I dont even remember how it feels.

I'm just so scared because I dont know if this is something that is going to get worse. I read how people are in so much pain and I havent experienced that and Im wondering am I going to eventually get to that point.

Im not eating ANYMORE fried foods at all. Every now and then I might get a cheeseburger with the kids from McDonalds because I was so tired of just eating chicken. I just dont know what to do or what to expect. I am so scared.....
fever
by: cindy

I have had Crohn's for 26 years and I often run low grade fevers now & then. You made need to be on Prednisone for a few weeks? Get plenty of rest and try to drink gatorade if you can get it down. I am on Asacol now and have taken it off and on over the years. It works pretty good for me but it feels like I am wasting them when they come out in the potty still intact.I know some of them are disolving. I also take Entocort, Purinethol, protonix. This combination has been working for me. Need folic acid which I try to get in a multivitamin. Try to eat light for a few days to give the colon a rest.
fever is normal
by: Anonymous

Having a fever with the inflamation is normal and it does make sense not to start anything new until your colonoscopy. Colonoscopies aren't fun, but well worth the info the Dr. will get. Stick with your GI doc's advice on meds- they have special training, whereas your primary care doc doesn't. I know it is frustrating- but the diagnosis process takes time.
*Update*
by: Mia

Hi, well the fever finally went away a day after writng my first post (The fever lasted for about 5-6 days). I was doing a lot of reading on this site about what other people eat and what they have been through. Although I am still very scared about having this disease the site helped me. I went to my primary care doctor and asked her to write me a prescription for ensure (which she did and my insurance paid for it after an authorization). I have read that a lot of people stay on a soft diet and drink ensure's when they are having a flare up. Well, I drink the ensure a couple of times a day and made a big pot of potatoes, chicken, and carrots (almost like a stew) and was eating that for a few days. In the morning I have a couple of waffles and a strawberry ensure. I am just so scared of what to eat and what I cant eat.

Does anyone have any advice about what to eat? I know I cant eat anything with seeds, nuts, and a lot of vegetables that I love like corn, peas, etc. I love salad (cucumbers, tomatoes, etc.) and now I am so sad that I cant eat everything I love anymore. In the last few weeks since I was in the hospital I have lost 11 pounds and I dont want to lose any more weight. Am I allowed to eat beef? I would love to make some meat sauce with pasta or have a cheeseburger from McDonalds with the kids or make a nice steak. I am just so scared after reading other peoples stories.

I havent recieved any feedback after posting my 1st story so I am really hopeing that someone can please respond to this one and maybe the 1st one also. I really would love to get any advice or hear some kind of good news from somebody out there. Please..........

Thank You

P.S. I hate to give to much information but I wanted to know if the soft bowel movements ever stop? I havent had a formed bowel movement in so long I dont even remember what it feels like. Is this going to be like this forever?

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