I'm brand new to all of this and unsure of lingo so forgive me if any of this is hard to understand.
I was just diagnosed last month after stomach cramps brought me to urgent care on Oct 30th. Urgent care sent me to the ER thinking it was for sure my appendix. ER did blood work and immediately asked if I had ever heard of crohn's. That was the beginning of what has been the worst time of my life.
I was admitted into the hospital to do more testing. A CT scan and a colonoscopy followed over the next four days. I was told the CT scan showed crohn's but that I would need to follow up with the GI doctor to find the results of the colonoscopy. I was started on antibiotics and steroids and sent home. Several days later I had my follow up with my GI. I walk in thinking I was about to officially receive my diagnosis. My doctor informs me that the biopsy came back negative for crohn's and that I needed to start tapering off the steroids and we would need to do more testing to try to figure out what was going on with me. I was in more shock that she was telling me that I didn't have it than if she would've told me that I did.
I left her office and went for lab/blood work. She scheduled an x-ray for the following Tuesday. At this x-ray I had to drink something called barium, a thick white milk shake looking stuff that was really heavy. I drank it with no issues and had the x-ray done. During the x-ray the doctor pointed to the monitor and said this is classic crohn's. Obviously I had no idea what I was looking at but I believed him. When I left, the only instructions given to me were to drink plenty of liquids.
In the days following the x-ray my pain changed. It was different and ohh so much worse. Completely unbearable. I also had not used the restroom since drinking the barium. I knew the two were related so I called the GI doctor's office for advice on how to get the stuff out of me and a refill on pain medicine. The nurse told me to get an enemas or suppository. On Friday thats what I did. After the enema I immediately felt better. That only lasted about 30 minutes and the pain returned. I worked through the weekend buckled over my desk taking pain meds every hour until my next day off on Tuesday (Nov 22) when I drove myself to the ER.
I was admitted into the hospital again. There was a CT scan done again that showed an abscess. The doctor said there was a rupture that my body walled off which created an abscess. The next day a drain was put into my right lower abdomen with a bag attached that would need to be flushed with saline 2 times daily. After it was installed I was transferred by ambulance to a hospital about an hour away. I was told the new hospital was better equipped for the surgery that I would need to have.
The next morning, at the new hospital, I met the doctor who would be doing the surgery. I was told that I would have a rather large incision on my stomach where they would go in to remove a part of my small intestine and a part of my large intestine (where the inflammation and abscess were located). They weren't going to reconnect the two but instead install a bag on my abdomen and in 3 months time, after my insides had healed, they would remove and reconnect everything. Here I am, an otherwise healthy 30 year old with no medical history who went to urgent care with some stomach cramps, hearing the plans to butcher my belly not once but twice over the course of 3 plus months. Terrified is an understatement.
Several days went by and my doctor returned with a new plan. I had been put on IV nutrition called TPN through a PICC line that he said I was responding well to. (I came into the hospital extremely malnourished since I was hardly eating with all the pain.) He said he would watch my labs over the next few days and if everything looked okay that I may be able to go home with my PICC line and TPN to continue to get stronger. I wouldn't be able to eat anything, giving my guts a chance to reduce inflammation so the TPN would be my only source of "food". If everything went as planned I would then only need one surgery, which would happen in just a couple weeks, and I would not need the colostomy since he would then be able to reconnect everything in the first surgery.
And that is kinda where I am now...
I'm home, on TPN IV 20 hours of my day, and trying to take it easy to be stronger for surgery. I have labs and an appointment with the doctor/surgeon on Friday. If everything goes well in that appointment I will have the surgery on the following Tuesday (Dec 13th).
I'm so brand new to all of this and super scared. I'm very nervous knowing that I will lose part of my large intestine. I'm terrified that I will have a 'weak spot' in my stomach that will forever cause me issues. I've never been so hungry in my life and it doesn't look like I'll be biting into anything for a while still which doesn't help with my sanity a bit. I've tried researching the 'type' of surgery I'll be having and there doesn't seem to be one that involves the small and large intestine. I'm up to my eyeballs in unanswered questions, so many that I have a hard time picking one to ask first.
Up until the last 30 days I have never had any real symptoms and I have no family history.
If anyone has any advice, what to expects after surgery, tips or tricks I would appreciate it sooooo much!
I was just diagnosed last month after stomach cramps brought me to urgent care on Oct 30th. Urgent care sent me to the ER thinking it was for sure my appendix. ER did blood work and immediately asked if I had ever heard of crohn's. That was the beginning of what has been the worst time of my life.
I was admitted into the hospital to do more testing. A CT scan and a colonoscopy followed over the next four days. I was told the CT scan showed crohn's but that I would need to follow up with the GI doctor to find the results of the colonoscopy. I was started on antibiotics and steroids and sent home. Several days later I had my follow up with my GI. I walk in thinking I was about to officially receive my diagnosis. My doctor informs me that the biopsy came back negative for crohn's and that I needed to start tapering off the steroids and we would need to do more testing to try to figure out what was going on with me. I was in more shock that she was telling me that I didn't have it than if she would've told me that I did.
I left her office and went for lab/blood work. She scheduled an x-ray for the following Tuesday. At this x-ray I had to drink something called barium, a thick white milk shake looking stuff that was really heavy. I drank it with no issues and had the x-ray done. During the x-ray the doctor pointed to the monitor and said this is classic crohn's. Obviously I had no idea what I was looking at but I believed him. When I left, the only instructions given to me were to drink plenty of liquids.
In the days following the x-ray my pain changed. It was different and ohh so much worse. Completely unbearable. I also had not used the restroom since drinking the barium. I knew the two were related so I called the GI doctor's office for advice on how to get the stuff out of me and a refill on pain medicine. The nurse told me to get an enemas or suppository. On Friday thats what I did. After the enema I immediately felt better. That only lasted about 30 minutes and the pain returned. I worked through the weekend buckled over my desk taking pain meds every hour until my next day off on Tuesday (Nov 22) when I drove myself to the ER.
I was admitted into the hospital again. There was a CT scan done again that showed an abscess. The doctor said there was a rupture that my body walled off which created an abscess. The next day a drain was put into my right lower abdomen with a bag attached that would need to be flushed with saline 2 times daily. After it was installed I was transferred by ambulance to a hospital about an hour away. I was told the new hospital was better equipped for the surgery that I would need to have.
The next morning, at the new hospital, I met the doctor who would be doing the surgery. I was told that I would have a rather large incision on my stomach where they would go in to remove a part of my small intestine and a part of my large intestine (where the inflammation and abscess were located). They weren't going to reconnect the two but instead install a bag on my abdomen and in 3 months time, after my insides had healed, they would remove and reconnect everything. Here I am, an otherwise healthy 30 year old with no medical history who went to urgent care with some stomach cramps, hearing the plans to butcher my belly not once but twice over the course of 3 plus months. Terrified is an understatement.
Several days went by and my doctor returned with a new plan. I had been put on IV nutrition called TPN through a PICC line that he said I was responding well to. (I came into the hospital extremely malnourished since I was hardly eating with all the pain.) He said he would watch my labs over the next few days and if everything looked okay that I may be able to go home with my PICC line and TPN to continue to get stronger. I wouldn't be able to eat anything, giving my guts a chance to reduce inflammation so the TPN would be my only source of "food". If everything went as planned I would then only need one surgery, which would happen in just a couple weeks, and I would not need the colostomy since he would then be able to reconnect everything in the first surgery.
And that is kinda where I am now...
I'm home, on TPN IV 20 hours of my day, and trying to take it easy to be stronger for surgery. I have labs and an appointment with the doctor/surgeon on Friday. If everything goes well in that appointment I will have the surgery on the following Tuesday (Dec 13th).
I'm so brand new to all of this and super scared. I'm very nervous knowing that I will lose part of my large intestine. I'm terrified that I will have a 'weak spot' in my stomach that will forever cause me issues. I've never been so hungry in my life and it doesn't look like I'll be biting into anything for a while still which doesn't help with my sanity a bit. I've tried researching the 'type' of surgery I'll be having and there doesn't seem to be one that involves the small and large intestine. I'm up to my eyeballs in unanswered questions, so many that I have a hard time picking one to ask first.
Up until the last 30 days I have never had any real symptoms and I have no family history.
If anyone has any advice, what to expects after surgery, tips or tricks I would appreciate it sooooo much!
