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Crohn's Disease Forum » Your Story » Praise God from whom all blessings flow


05-08-2014, 01:31 AM   #1
fordmar85
 
Join Date: May 2014
Location: East Prairie, Missouri
Praise God from whom all blessings flow

This morning, well yesterday now, I finally had the opportunity to get to a GI.

My story starts back in June of 2010, I had been married for 3 months when out of no where I started to have extreme pain in my RLQ, but I am a pastor and that week was Bible School so I decided that I was too busy to go to the hospital. I toughed it out and preached my younger sister's wedding two weeks later, still having not gone to the hospital. Then 2 weeks later I was blessed to still be around to take my High School students to a Teen convention. During this whole time I was losing weight, in severe waxing and waning pain in my RLQ and back, vomiting often and constant diarrhea.

Finally my wife talked me into going to the hospital as I crawled up the steps to our bed room. 8 hours later I left the hospital with a diagnosis, community acquired C. Diff. 30 minutes later as we sat at breakfast the hospital called me to come back and be rechecked because the second reading of my CT was suspicious. 3 hours later, having still never seen a surgeon with a rock hard abdomen I was released with a confirmation of C. Diff.

After a month and two clear C Diff tests with the same pain and problems my wife forced me to go back to the ER, it had gotten bad enough she called my mother and a retired pastor friend to help her. That afternoon I was blessed to have a Doc that I worked with often attending to me, I volunteered on one of the Fire Departments he oversaw. Knowing me, he took more time and was determined to find the issue, EMS providers don't just come to the ER.

During that exam he pulled the CT from the month prior and saw inflammation, 2 minutes later I am getting pain meds and the surgeon shows up and diagnosis me with appendicitis. My first hospital stay was 14 days, halfway through I had a resectioning. After that they told me I was fine and life continued as normal, I still had Diarrhea but I assumed that was because of having a shorter colon and my PCP nor surgeon never seemed concerned.

Fast forward to July 2013, we had moved half way across the country less than a year before, our second child has just arrived and we are doing our best to love on our little ones. My In-laws had come to visit, and I love my in-laws, but I am just not feeling right. I end up laid up in bed chugging MOM hoping to clear this constipation and things end up better. That is, until they didn't I had progressively begun feeling worse through to late August. Then it hit me hard, I couldn't sit, stand, lay down or do anything to find comfort. I swore my bowel resectioning had come apart. It got so bad I called for an ambulance and scared my dispatcher because she could hear it in my voice.

The local ambulance here can not give pain meds for abdominal pain so I sent them home and had my wife take me to the ER. The ER started with morphine and shortly there after I had a CT done and they were pushing Dilaudid and a surgeon was coming in. I had a bowel abscess, 13 days, 4 JP drain and 2 failed interventional radiology drains later I am sent home still not knowing what the issue is.

Late September I had a colonoscopy and the words of doom hit me, Crohn's Disease.

Since then, due to not having insurance and waiting on the state to approve Medicaid, I have been limping along on sulfasalazine, which did not work, prednisone and hydrocodone. Until this passed morning when I finally am able to see the GI because the state finally came through, funny how it takes so long for the working man.

Things seem to be moving fasted and are scarier now, but they are moving. This coming morning I go in for an Upper GI and Small Bowel Series followed by blood work and TB test. My GI has said it seems like I have a Stricture and if that is the case I would have surgery again, but he wants me ready to start biologics ASAP.

The idea of going straight to the "big guns", as he put it, both concerns and comforts me. It concerns me because I want to have more options, I am not quite familiar with the meds on either way and it gives me concern that I am worse than I believed, but it comforts me in that he wants to manage this aggressively.

At this point my head is just spinning and I am trying to learn as much as I can.

I know my TB test will come back exposed, after 13 years on the ambulance that's no surprise, and that a chest x-ray will be the next step there as well as Hep B test since I can't locate my shot records. Otherwise at this point I am just having my head spin around me in circles.

But through all of this my wife has been my rock and my world, it is for her that I praise God the most.

Grace and Peace
Mark

Last edited by fordmar85; 05-08-2014 at 01:51 AM.
05-08-2014, 05:30 AM   #2
valleysangel92
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Hello and welcome to the forum

It sounds like you've had quite a journey, I'm glad you've now got a diagnosis and can start looking at proper treatment .

Do you mind me asking what your current symptoms are?

I understand how scary this is, it can get real serious real fast, and that can be a lot to get your head around. All crohns patients are different and as such, all IBD specialists have different approaches to treatments, some will start from the mildest medication, working up through the list until they find one that controls the symptoms with the fewest side effects. Others will start from the top and work their way down, they start with surgery or the most aggressive medications to try and bring the disease under fast control, when the patient is doing well enough, the dose may then be reduced or the medication changed for something less drastic.

Both approaches have merits and flaws, starting with milder medications means there are less risks of severe reactions and dangerous side effects, but it can mean the disease is harder to control completely, sometimes meaning that the patient is left with long term damage needing surgery. Starting with more powerful medication exposes the patient to greater risk of a reaction (serious side effects are still rare and you will be closely monitored so don't worry) but means that the disease is controlled faster, and therefore long term complications are less likely.

If it helps you to feel better about the treatments, just remember that the risks of untreated crohns are a lot higher than the risks of the meds, there are many people here who have had treatment with biologics and for a great number of those it has given them their lives back.
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-08-2014, 07:30 PM   #3
fordmar85
 
Join Date: May 2014
Location: East Prairie, Missouri
Currently I have severe RLQ pain along with constipation and frequent gas.

Today I had my Upper GI and Small Bowel Series. I also received a call shortly after getting home from my GI, he told me "you have gotten much more complicated than yesterday." It seems I have a number of fistulas in my bowels that were found during today's tests.

Now I am scheduled for a CT with contrast tomorrow and my GI is contacting the regional specialist, about 2.5 hours away.

I was told that with the fistulas if they give me the Crohn's meds and it does what it should the fistulas would be corrected, which would cause me a bowel obstruction, so now things get interesting.
05-08-2014, 07:44 PM   #4
Farmwife
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Hi and welcome.
Thank you for sharing your story. I'm sorry for all you've been though but am very touch by your faith in the Lord.
My dear Grace is five and although your journeys have been different she also has a long road ahead.
I just wanted to add the she is on Humira, MTX and pred. As worried as I am about the side effects of these "big guns", I worry more about untreated Crohn's.
The side effect scare me beyond belief but that's when I truly let the good Lord take over that part.
As of now Grace is having no side effects that would stop her from taking it. We have upped the dose of the Humira and mtx in hopes of it working better, faster.

I pray you find the right medicine and are on the road to recovery soon.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
05-08-2014, 08:18 PM   #5
nogutsnoglory
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Currently I have severe RLQ pain along with constipation and frequent gas.

Today I had my Upper GI and Small Bowel Series. I also received a call shortly after getting home from my GI, he told me "you have gotten much more complicated than yesterday." It seems I have a number of fistulas in my bowels that were found during today's tests.

Now I am scheduled for a CT with contrast tomorrow and my GI is contacting the regional specialist, about 2.5 hours away.

I was told that with the fistulas if they give me the Crohn's meds and it does what it should the fistulas would be corrected, which would cause me a bowel obstruction, so now things get interesting.
Remicade is supposed to be the most studied and proven drug against fistulas. The crohns meds helping your fistula wouldn't create an obstruction though, these drugs can help you to avoid developing inflammation or scar tissue that could lead to an obstruction. God bless and best of luck to you.
05-08-2014, 08:36 PM   #6
fordmar85
 
Join Date: May 2014
Location: East Prairie, Missouri
Remicade is supposed to be the most studied and proven drug against fistulas. The crohns meds helping your fistula wouldn't create an obstruction though, these drugs can help you to avoid developing inflammation or scar tissue that could lead to an obstruction. God bless and best of luck to you.
The way I understood my GI today, I already have scar tissue that the fistulas are bypassing. I know from my last colonoscopy (September) that I was so swollen and scarred that they could not place the camera the whole way through my colon.

What I took him to mean may not have been the way I communicated it here. It seems the fistulas are what are keeping my bowels moving right now so my GI fears that if he corrects those with medication I will have an obstructed bowel, rather than the meds causing a bowel obstruction.
05-08-2014, 08:46 PM   #7
nogutsnoglory
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Interesting. Are you saying your fistulas are going through your scarred intestines? If that's the case which would be a first for me to hear but not impossible it might actually serve you well to keep the fistulas there as long as they don't cause problems. Some do live with fistulas for years, they really are only an issue if they connect to other organs, drain or become infected. Otherwise if a fistula just loops between intestine they can be harmless.
05-08-2014, 11:35 PM   #8
DustyKat
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Hi fordmar85 and

I am so sorry to hear of what you have been and are now going through.

Okay…I see what the surgeon is saying…

The small bowel, although much narrower in gauge than the large bowel, is considerably longer at approximately 7 metres. For the small bowel to fit into the abdominal cavity it folds back on itself as you can see in this image…



…you will also see that your issue is located down where the appendix is in the ileum.

A fistula is an abnormal opening between to surfaces/organs. Scar tissue means you have had inflammation present for quite some time. Scar tissue is hard and inflexible and causes narrowing in the bowel which can lead to obstruction. Since inflammation is a part of the scarring process it also means that the inflamed area of bowel presses against another area of healthy bowel causing it to then become inflamed and they ‘stick’ together. As inflammation persists abnormal passages open up (fistula’s). As the scar tissue also builds and obstructs the normal flow of faeces pressure means the faeces will find alternate ways to move forward and that will be via the next best opening, the fistula’s. So what the surgeon is fearful of is closing the fistula’s via medication may well lead to a bowel obstruction, and your understanding of that is correct.

It has been shown that Remicade can lead to very fast healing and in doing so can create scar tissue as a part of that rapid healing process.

Good luck with the next test and I hope you soon have clear answers and direction.

Dusty. xxx
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