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What do you guys think? Looking for opinions.

Hello. I would like to ask fellow forum members what they think about what I have experienced and what I should do. Sorry about it being so long but wanted to be thorough. I'm male mid 30's good overall health, diet and activity (not a health nut but I don't eat beef or pork, candy or fast food, etc. and I do a minimum of one physical activity a day).
When I was around 18 or so I developed duodenal ulcers, negative for H pylori. Took prilosec, prevacid and propulsid for a while then 100% better no recurrences. My stomach is very strong now no issues.
About 1998 I started having abdominal pain. Nothing happened as a precursor just came out of nowhere. Ended up having a perforated colon and sepsis. Colon resection of about a foot, no issues with post op, regained normal function. About a month later I got a small external fistula in my anal region, got it cleaned out and healed up no issues.
So for the next ten years or so I was doing fine, no medications and minimal issues. Sometimes I would have a slight pain in my rlq that felt like a small rough spot in my digestion and a bm would usually relieve it. I always assumed it was probably just a slight constriction from where they re-attached the colon. And every year or so I would have a 24 hour episode where I would get a real bad stomach ache that felt like my digestion stopped, but it didn't feel like it ever involved my lower GI. Vomiting all stomach contents down to the bile at the bottom would almost instantly relieve the issue like nothing happened. That occurred maybe 5-10 times over the course of 10 years and stopped happening completely a few years back.
So now that brings me to the most recent issues. About a year or two ago I started having minimal generalized abdominal pain that moved around and came and went but wasn't any big deal. It also started to seem like I couldn't empty out well sometimes. Like I would start to dump then almost like a valve would close and nothing more would come out. Then a few hours later the rest would come out. This would not occur all the time. Most of the time I would eliminate fine. Lately it has been starting to occur more often though. I have never had constipation and very rarely have I had diarhhea. I always have a bm every day with the very rare exception of maybe skipping one day. But the bm changes form, sometimes in the same day. Sometimes it will be totally normal, then loose stool, then long compact. Sometimes all in the same day.
In addition, I have been having episodes every month or two where out of nowhere I develop middle abdominal pain and nausea. I'll start the day fine then within a few hours I feel bad. It kind of feels like a partial SBO that happens because my lower gi tightens up and feels swollen (not distended, just tight and swollen feeling), then that works it's way up. I'll vomit if I try to even drink water. So I'll feel extremely lethargic and spend a day in bed, then within a day or two later I'm fine. Sometimes a fever will accompany it, sometimes no fever. A couple times the pain was bad enough I considered going to the hospital, but they would just give me pain meds and an NG. I just went NPO on my own until the symptoms passed.
So, what I did because I was having these symptoms was go to a Gastoenterologist I know to get checked out. Started with a blood test and did an O&P to check for parasites as that was a real possibility due to lots of third world travel, negative. Did a colonoscopy and endoscopy and nothing abnormal was seen. Also did CT with contrast and for the most part looked fine. Doctor said he might have seen a small amount of inflammation in the ileum but that's it. So he prescribed me budesonide, which I did not take for months because I really don't like most drugs. Once I had a recurrence I started the budesonide and finished it all. It did not make any change at all. I also started seeing a natural medicine doctor who I know from experience is real and just started drinking herbal tea with the goal of basically making me flow more freely. I also had acupuncture when I had my last episode and it definitely made a difference and stopped the pain just a few hours later.
So, I think that's enough info for now. What do you think? It very well could be crohn's but my symptoms are so all over the board. My bottom goal is just to have a more freely flowing digestion system. That seems to be the base of my episodes. Thanks for taking the time to read this.
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

Just to confirm did the docs ever look into what caused the perforation and fistula? Do you notice whether specific foods set off episodes with the tum? Are you due to go back to see the GI doc at all and did they give any type of explanation for the inflammation found and do you know whether any biopsies were taken during the scope you had? I would also query whether something like a pill cam can be done to check higher up the GI tract to confirm whether the problem lies there or not. Also in the months you were given the Budesonide and not take it did the tum get worse or stay the same? What dosage of this did you take for this?

AB
xx
 
Just to confirm did the docs ever look into what caused the perforation and fistula?

There was never any confirmation of what caused the perforation from the pathology, possibility of crohn's but no verification. Everything was inflamed and a mess by the time I went to the ER (went to an urgent care and they were idiots)I don't know how you would confirm what causes a fistula but it was opened up and let heal, no abscess.

Do you notice whether specific foods set off episodes with the tum?

I am extremely conscious of analyzing the symptoms and trying to find similarities with foods and reactions but there is no relationship as far as I can tell. There has been no common denominator with food and sometimes I won't have eaten for over 12 hours before it happens, and I'll have had a normal bm within that time too. Only thing with food is after I eat sometimes the peristalsis feels tight so I get soreness as it moves through sometimes.

Are you due to go back to see the GI doc at all and did they give any type of explanation for the inflammation found and do you know whether any biopsies were taken during the scope you had?

I already had a follow up from the procedures that was last year. I have a follow up with the doc in a few days due to the increased frequency of symptoms. Guaranteed he will want to just throw a medication at me but we'll see. No biopsies were done during scopy or if there were they were normal. There were no problem areas visualized during scopy. With CT and contrast doc stated literally "little" and "possible" inflamation in ileum but that was kind of vague. I'll confirm details with doc when I go.

I would also query whether something like a pill cam can be done to check higher up the GI tract to confirm whether the problem lies there or not.
Also in the months you were given the Budesonide and not take it did the tum get worse or stay the same?

Don't recall the budesonide dose. I went for a few months after being given the prescription with no symptoms and I started taking it when I did have symptoms. And it's not really my stomache it's my lower GI. I think the stomache only gets effected when the lower GI tightens up then it backs up. I have only been experiencing the current symptoms for about 1-2 years and I will have months with no symptoms.
 

Angrybird

Moderator
Location
Hertfordshire
I would definetly push to get more testing done when you have the follow appt, I would also ask the doc if they can give any type of clue as to why they think you had the previous perforation and fistula - surely these are indicators that something has been going on. Please keep us updated on how you get on.
 
SO...had a full abdominal MRI w/ oral and iv contrast and there appeared to be be thickening of certain areas of my small intestine, but no active inflammation, and a possible fistula between loops. Also did full blood tests and only thing not WNL was a little bit low B12, so I've been taking B12 pills and gonna do the once a week nasal spray too. For the first few months of this year I was getting the abdominal pain and nausea about once every month, but I've been good for a while now. Still mainly unformed loose stools, no diarrhea and no constipation. The GI doc wants me to get on 6MP, but I do not see the point if the damage was from a while ago and I do not have current inflammation.
 
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