Crohns Disease- My story

My name is Shelby Bowman, Im 21 years old. I was just recently diagnosed with Crohns Disease. This has been the worst last couple of months to get used to. And I am still dealing with it day in and day out it seems. It all started in the Middle of January. Ive always had stomach problems where when I ate my stomach ALWAYS hurt afterwards, which was hell for me. But I also thought it was my GERD that I was also diagnosed with as a kid. But as I was saying, in January ive had a steady low grade fever, and a couple nights with a very high fever for like a week straight. I would go to work feeling so sick, and then come home and do nothing but sleep. Which was very odd for me. So one night I decided to go to the Immediate care center, because my doctors wasn't open due to the fact that it was around 8 PM. They seen me, ran test. And the doctor came back and claimed it was the "flu" but the flu test they had ran on me came back negative. Which was weird, I've never had a flu test come back negative and me actually HAVE the flu. So I didn't even pay attention to her diagnoses, that was a waste of 35$, So I scheduled an apt with my family doctor later that week, I was running fevers, fatigue, throwing up, constipated, the whole nine yards. I actually thought I may have been pregnant at the time. Days past, then one day I had such a HORRIBLE stomach pain, I bent over in tears and was literally laying in the fetal position at my work (I work at a daycare) I couldn't wait, I knew there was something wrong with me. So my father came and picked me up from work and we went to the ER. They got me back, placed an IV in my hand and I remember the relief. They had given me Dilated. I was finally able to relax, and feel NO pain. I was so happy. Then after that they made me drink the nasty contrast and took a CT scan. They also took blood, seen my white count was up, so they knew something was going on and then they seen swelling of my illeium, so of course, right then and there they admitted me. A entire WEEK went by of test, blood work, etc. They never really gave me an actual diagnoses and IDK why! But they sent me home after 8 days in the hospital. I went to a gastro doctor and they took blood, and he asked me how I was feeling etc. I still was hurting, I knew there was something wrong still! and couldn't believe they couldn't find out the problem! So when my blood work came back, what do you know. My white count was high AGAIN. So me and my mom just went to the hospital on our own with out my gastro doctor giving me the orders to. This was on February 8, 2013. Went through triage once again, then the IV, then the pain meds, then everything again in a pattern. One thing was different . My CT scan came back worse this time. I had water in my Pelvis. And what do you know, from my recent colonoscopy that they had done two weeks prior shown that I def had Crohns disease, and my intestines basically "blew up" (Ulcers) So I was scheduled for Emergency Surgery the next morning. I was SO scared, I've never had surgery before and I was in so much pain. They did my surgery (Small Bowel Resection) And took out alllll the infected parts in my intestines. The ended up taking out 12 inches of my small intestines, and 4 inches of my colon. I had the tube going up my nose, into my belly, the oxygen tube in my nose, catheter, the whole nine yards. It was the worst experience I've ever had. Recovery was horrible in the hospital, I had gotten MRSA during my surgery. Showers were a nightmare, I was up there mostly by myself until my fiancé got off work at night. And walking was so hard to do. But I managed to get through it. Now im going to try and shorten my story some, I already have left out some details! lol. But Im TRYING to go into remission, I still haven't managed to do so quite yet. I switched GI doctors, and I like the one im with way more now. Since my surgery, about 7 weeks after, it came back. My GI doctor said he didn't think they gotten the whole infection out when they did my surgery. He said my case is probably one of the most aggressive cases of Crohns he has ever seen. Since my surgery ive had a small bowel follow through, which showed narrowing in my colon. A Colonoscopy, and the scope where they go down your throat as well. And I counted in the pictures they took a good 11-13 ulcers just sitting on my intestines, which makes me very nervous. I also have started on Remicade, that is the only medicine I am on right at this time. But it still seems like my Crohns is trying to fight through that as well. Im about to be on my Week 6 of the "Start up period" for my Remicade. Then I will be going every 8 weeks. My last episode was Sunday morning around 6AM. I still have frequent diarrhea almost every day (is this normal?) And also my last episode I woke up with watery bowels, and throwing up. It wasn't too pleasant. But im still confused on why my stomach is STILL bloated on one side of my stomach compared to the other. But im still overall bloated, and I still feel pain from time to time. What should I look out for? Can anyone give me any tips? Signs? Etc. Will I have to have another resection done in my life time? Why do I still have watery bowels, throwing up, pain in the lower (my) right hand side of my abdomen?

oh yeah with Remicade, it seems like ive gained weight like 10 lbs. Normal or not? (Current: 123) Is it the Remicade, or the disease?

Im the only one in my family that has Crohns, its supposed to be handed down, but im the first. That is why I am here. Me and my family are ALL new to this. So help please if you all can! Thank you for reading!


Looking forward to yalls reply!:thumright:

Hi Shelby,
How unfortunate that you are going through this. Yes, even after surgery many people still experience the symptoms that Crohn's can cause, especially if they are still seeing lesions on your intestines. From what others have said, the medication can take a few months to really start working for you, so it may just be a waiting game. Typically with Crohn's, people tend to lose weight due to eating less and receiving less nutrients due to malabsorption. Many people with Crohn's are the first in their families to have it, so don't feel abnormal because of that.

Have you checked into any of the recommended diets for Crohn's sufferers? The elimination diet or the SCD diet may be of some help to you. Eliminating all of the foods which trigger or worsen your symptoms may be a good place to start and offer you some relief.

I'm sorry you have had to go through all of this. It's unfair but I think this disease makes us stronger willed individuals.

Surgery can take a toll on the body and it can take a while to fully recover. As for the watery stools... I have only had diarrhea since resection. Have you had work down on the ileum? Sometimes medication like questran can help when diarrhea is being caused by removing that area.

Hi Shelby,

I'm also new to this forum and not native English speaking so my spelling and medical terms might be of poor quality Was about your age (24) when I was diagnosed with Crohns. I was a rather big guy with my 6"2 and weighing in at around 220 pounds. I was also very fit practicing Jujitsu and Kung Fu. In addition I worked as a building carpenter, had three wonderful children and life was good. However had some stomach pain that came and went. Under a period of high economical pressure, wife not willing to work and me working two jobs to make ends meet, my condition exploded into one of the worst nightmares. I had such horrific stomach pain that I laid in bed after most meals. Rapid fevers, vomiting and inflammations in the skin. After colonoscopy, gastroscopy, ultra sound they confirmed that i had Morbus Crohn's Disease. Bit of a blow for a young man, so I do understand that you are feeling down.

I was placed on diet such as hose through the nose and into my stomach with liquid already digested food, and all sorts of inflammatory medications, Imurel cell poison and Prednisolone steroids. Also heavy Flagyl cures and other antibiotics were tried. The worst part was that my doctor set me on the steroids (Prednisolone) for almost 7 years. The result almost killed me blowing blood vessels all over my body. I also ended up with huge amounts of artificial tissue in my guts having my thin column grow together in a big chunk of tissue and guts opening channels between column and thin column with explosions of infections. I was then thrown like you on the emergency operating table because I was peaking 240 pounds even though food didn't pass through my system. I was told it would take about two hours, but ended up with 11,5 hours and two shifts of surgery personnel. They cut out a 4,6 pound chunk and showed me pictures of it afterwards. Apparently they were pleased with their work, but I ended up with a stomach that was gutted from my lower belly to the chest cavity and a hospital infection that they refused to medicate. This resulted in all the stitches re-opening the inner cavity skin, the muscles and outer skin making parts of my stomach and guts peek out through a 6 inch open wound. Every time I ate food I had to push parts back in. Only the thin skin managed to shut itself with horrific deformations, but I had to use diapers onto the wound for over 12 months. They also took me off pain killers 3 days after the surgery, and while I tried to explain to them that I was falling apart they left me for 9 days without any medication or attention. If this was in America I would probably had a good case dragging them to court. Then on the 10'Th day two female doctors came to see me. I was starting to lose my sanity due to pain and had during the night dressed myself and tried to escape the hospital with a 4 inch bubble of infection in the lower part of the wound exploding onto my civil clothes and onto the floor. This caused a nurse that came in doing her night shift to sound the alarm. The doctor on guard duty was also called in and I sat with him for 45 minutes with him trying to convince me to stay. I said that I refused to get myself killed in this hospital..lol He then arranged for the two female doctors to come visit me the day after. They put on some sterile gloves and ran two fingers into the opening right under the chest cavity. They looked at each other and said that: Oh he has ripped open, we need to get him down to surgery right away...

So they dragged me into surgery at 6 PM, and when I woke up, they stitched me up with old fashioned needle and thread. Also put two thick wires in my chest cavity. After 3 days I was ripped open again, and they gave me up. I was sent home looking and feeling like meat in the wrong end of a grinder...after 12 months of diapers on my belly sucking up infections from the surgery I started some sort of recovery. Still had to plunge food back in when I ate any food.

I refused to see a single doctor for the next 9 years. I took a big scare from my experience. This resulted in shut down when my thin column stopped passing food through. I was back where I started with immense pain lying flat out most of the day. So last year I was back in hospital for surgery. This time I was without Prednisolone in my system so I had help building up hope that this would be the final surgery and that I would have a far better recovery. I will not explain how this went other than saying it ended up worse than the other...I have had 4 surgeries after that, and at least one good thing came out of it. The managed to close up most of my open wound and almost managed to sew some of my stomach muscles back together! 

Enough scary hospital stories, I am sure there are as many as there are people with Crohns diagnose.

So now for a somewhat more positive thing… LDN…few doctors recommend it, almost none will give us prescription for it, they will almost always try to place you on Remicade or other highly researched and tested medication, even cell poisoning is preferred before this “miracle medicine” is considered. After all they have been through approved methods and even though they have some rather serious side effects like raised risk of cancer and liver damage it seems like money talks before people. They have spent billions developing these medicines, but nobody want to touch the LDN because it’s a free patent and they will never get a refund for their investment if they choose to explore and test it meticulously. Here in Norway we get a Remicade shot worth between 4000 and 5000USD every second month instead of a 20USD a month treatment with LDN. I was on Remicade, and happily off it again. Also I’m in the startup phase of my LDN and my life is already about to change back to what it was 23 years ago (apart from all the gray hair and wrinkles of course). I hope LDN will do the same for you, and that more doctors around the world will stop thinking profit instead of healthcare.

But most important of all, stay positive through all your pain. We are only characters in this game called life. We are obligated to make the best out of the cards we are dealt, and no matter how we feel that this is highly unfair remember that there is always someone that is worse off (even though I admit that it’s difficult to believe at times) 

Hi Shelby and a warm welcome to the forum for you

I'm sorry that you have been diagnosed with Crohns and to find out too in such extreme ways, I imagine it was quite a shock to the system to have surgery and find out you had Crohns, my heart goes out to you. I was diagnosed 6 months ago and still feel like I'm coming to terms with it, I feel it is an awful lot to have to accept but there is no rush cos it's not going anywhere lol so I'm doing what was suggested to me and that's take it one day at a time.

By joining the forum you have already made a step in the right direction, there is so much information and help available and there is always someone to give a kind word . There is a sub-forum for spouses that your fiance might find helpful, it provides a different perspective on how the disease effects our loved ones, and you might be interested in the surgery sub-forum, it's possible that someone may be able to answer your queries there. I really hope that you find the help that you are looking for, take care and look after yourself, big hug to you. :ghug: