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Hi! I was diagnosed with IBD in 2005. At the time, I became very sick with pain, diarrhea, weight loss, and hair loss. My father had Crohns, so my doctor suspected this and put me on Asacol and referred me to a GI specialist. I was sick for more than three months before the Asacol regimen began working. The GI doctor wanted to put me in the hospital, but I refused since my husband was active duty Navy at the time and I had a 2 yo and 10 yo at home. I recall curling up on the couch in so much pain, in the wee hours of the morning, so I could moan and nobody would hear me. I had many tests colonoscopy, endoscopy, ultrasounds, follow through, etc. This GI doctor diagnosed me with UC.

A new duty station, for three years and my IBD is being controlled with the maintenance dose of Asacol. Another colonoscopy in 2010, diagnosed me with Crohn's,instead of UC, with suggested continued maintenance dose. I could resume colonoscopy at 5 year intervals.

Three years later, my husband is retired from the military, i have just completed 2 years of graduate school, 1 child is in college and another beginning middle school, and I'm in a flare. About a year ago, I began feeling fatigued and dizzy at the end of my 2nd semester of graduate school and went to the doctor. My thyroid was not functioning properly, so I assumed it was that. I completed my 2nd year of graduate school and graduated in May with hopes of continuing my education even further. I told my doctor I still do not feel good, please check me again and he suggested I go to GI again. I did this and now have been diagnosed with a stricture, through a colonoscopy, yet my Crohn's has not been horrible, at least not like 2005, but I am tired, dizzy, forgetful, my hair is falling out again (not as bad as 2005 though) and now I'm anxious, because who knows when these feelings will hit me. It's like it comes on all of a sudden.

I'm now on the active dose of Lialda and I have been referred to a colorectal surgeon and I am likely electing to have the stricture resected. Since the surgery has been suggested, my medication is not being changed, since, according to my GI doctor, I'll only be putting off the inevitable, which might become urgent.

The good news is I'm not going to move again, so my doctor will be my doctor for many years, I found this forum and have been utilizing the low residue diet I found on here. Considering the experiences I have read in this forum, the education I receive from my GI doctor, and researching recommendations through evidence based literature, I am finding comfort in making this decision.

I do wish my thyroid levels were the problem, but I'm thankful my Crohn's is not horrible and so far my inflammation isn't malignant. It is why I have chosen to consider the surgery, because not being able to traverse the stricture leaves doubt. Thank to all of you for your posts and I appreciate this forum was created! It's awesome!
 

valleysangel92

Moderator
Staff member
Hello, welcome to the forum :). I'm glad you've found us :).

How are your symptoms at the moment? How are you feeling about the potential surgery? I know it can be very daunting, but if there is scarring or extreme inflamation, surgery may be the only thing that will help and you may other wise end up in a vicious cycle or as an emergency patient. It is far better to have planned, elective surgery in a calm situation than to have a rupture and be rushed in.

I recently had a hemicolectomy and found it to be a far easier experience than I'd thought it would, so i hope you will find the same.
 
Hi! Thanks for the welcome! I'm nervous about the surgery. My symptoms aren't as horrible as the 1st long-term flare, but there are new symptoms such as dizziness. Yes, I think I should do this in a calm way. I have no idea what some of the terms are on here, but I'm sure it won't be long till I'm up to speed. Is a resection a hemicolectomy?

Donna
 

valleysangel92

Moderator
Staff member
Im glad your symptoms arent as bad as they first were :). The calm way is always the better way with these things. Sorry about that, when we say resection we mean removal and reconnection of part of the intestines. Hemi is partial, colecomy is colon, so i had a partial removal of the colon. Glad you asked :).
 
Welcome to the forum! I am new as well... Was your husband active duty AF? If so are you getting medical treatment from the military hospital? I am currently AD and it seems like a unique challenge to handle Crohns with mil doctors....
 
My husband was active duty Navy. In Norfolk, VA, my first diagnosis, I was seen by a civilian. In Pensacola, I was seen at the military hospital, but no longer flaring, but GI did a final study prior to me moving. I am seen at the military hospital here SAMMC formerly BAMC and really like the care I'm getting. My GI doc is my doctor for this and I see him always. He is working with the surgeon and will follow me closely for the surgery too. I think it's because there is such a large medical base (civilian and military) here, I'm more comfortable. Where are you stationed now?
 
TrumpetGuy, That is where I was diagnosed, but by a civilian GI doctor. He was in Newport News off 17, if I remember correctly. I used to love going to the Y in Yorktown just north of Langley. It sounds like the military doctors aren't understanding of your Crohn's. I couldn't imagine being active duty with this. Tough! Hang in there!
 
This thread got my attention because I too work for the military, but as a civilian, but work for the Army, so you know what I mean basically. I just got diagnosed with Crohn's, I can never spell it right,....lol...been sick for about a year, but a bit depressed today knowing I have to deal with this for life. I feel your pain, and enjoyed reading your story. Any suggestions of how you live with this?
 
Hi Mimzim - Sorry you are having troubles, but I hope surgery helps for you. Are you having any intestinal symptoms or pain from your stricture? I just ask because dizziness is not really a common symptom of a stricture and I worry that it may be something else causing your dizziness. I too have 2 strictures that I will be getting surgery on - my main symptom is severe pain when eating.

I made sure to get a few opinions before deciding on surgery - I went for a consult at the Cleveland Clinic. I probably waited too long to decide, as I am now waiting for surgery because I go so sick that my body was not prepared for it (finally scheduled for Sept. 11!), but it really was the last thing I wanted. Good luck with whatever you choose!!
 
Hi Jessy! Like you, I didn't think Crohn's when taking to my doctor regarding my dizziness. Initially, I thought the dizziness was because of my thyroid levels being high, but that was corrected and I still felt tired and at times dizzy. I don't have pain that I would have, if I were not on Lialda. In 2005, the pain was excruciating and my GI told me with any signs increase my Asacol (now using Lialda). My dose was increased to prevent worsenung symptoms when my blood tests revealed I had inflammation. Turns out dizziness can be related to Crohn's, since I've recently done a lot more research, including reading the research here. As well, other people in the forum describe dizziness also. It is likely due to malabsorption and hormonal issues, because digestion and absorption are not optimal, due to inflammation, but that's the layman in me talking.

Yes, I have a stricture and have seen the pathological evidence and I do not want emergency surgery. Evidence reveals strictures are not resolvable through medication. If I were a new patient and in a city that not part of medical research, I might not be as comfortable as I am, but fortunately working with my doctors I feel confident the right decision will be made.

It looks like you and I have had Crohn's the same amount of time and I'm anticipating my surgery will be in September also. I hope your surgery goes well. Let me know how you are.
 
It does sound like we are in the same boat, we can be recovery buddies! My surgery has just recently been scheduled for September 11th. It will be a resection and strictureplasty. I am so ready for it to be over with, this summer has been a tough on with lots of pain and hospitalizations.

Will they be able to do your surgery laproscopically? Mine will be open due to the severity (which was disappointing at first, but I have accepted it). I can see how you dizziness can be related to your CD as a secondary symptom to malabsorption and the other issues you mentioned, so hopefully this is the fix for you and leads to a long remission. Good luck, and keep us posted! I will do the same. :)
 
I will keep you updated Jessy. I have my surgery consult the day you are having surgery, so I will be thinking of you. I hope all goes well and your recovery is smooth. Let's keep in touch.
 
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