• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Im back

Its been quite awhile since i posted.
As i had abruptly disappeared without a clear case as to what was wrong with me.
I had two lovely gents trying to help me through it, and i left it on the idea that i had a gallstone? I believe thats how i left it.

Well after months of thinking that, that ended up not being the case(remained dormant). In fact, my stomach issues over just the past two years have evolved tremendously, dozens of times, and not one time was i in the hospital (maybe 2 years ago, but memory fades). Of course i recently had a cat scan, i do still have appointments nd such that i regularly frequent. However, the issue lies in -how many times the stomach situation changes for me, and it makes me look... Well, crazy.

At the moment i have, what i believe is constipation now. Yes, after all of that i have been left with constipation. Of course it is not that simple. As the last 3 months i desperately tried to see my gastro about a possible abscess that i felt, somewhere different this time. He even said that he saw 'liquid'(from the ctscan results)-in the message he left with my grandmom (my grandmom is old nd she mis-translates messages all the time though).
Long story short, im not hung up on that idea now, as my main concern is fishing out this gooky excrement. Im just trying my best to drink alot and not add to any remaining issues. I just feel horrible, as im in constant pain and cant eat again, after i recently lost+regained 20 pounds, twice, spring season as i contended with -the issues of months prior. I just dont understand how one week i had diarhea, then the next im constipated. It does not make sense.
 
Last edited:

Scipio

Well-known member
Location
San Diego
I just dont understand how one week i had diarhea, then the next im constipated. It does not make sense.
That happens all the time with IBS-M (mixed) also called IBS-A (alternating) as in alternating between diarrhea and constipation. Has your doc assessed you for that?
 
  • Like
Reactions: mo7
That happens all the time with IBS-M (mixed) also called IBS-A (alternating) as in alternating between diarrhea and constipation. Has your doc assessed you for that?
Thank you for reply.. Wow, ive never heard of that.. I dont believe ive been tested for that, not to my knowledge. Usually i tell him how i havent had issues passing stool, nd usually experience a so&so pain... So i believe it would be a recent occurence...
I have been trying to get ahold of the doctor, as he is always busy. What im crossing my fingers for, is that im able to drink alot and pull water into the stool, and have it become 'passable stool', once again, cause im not getting much movement -to allow me to pass one- atm. Ive had something like this happen before, nd i had to... Well, make mess, so to speak, to get it out lol... I think u can draw to conclusion, but like... Iuno this is quite unusual. I need to look into IBS-M, IBS-A, that sounds interesting... I'm diagnosed with Crohns atm and have been on humira for several years, but it hasnt been working as well as it should be.
 
Last edited:
"If you don't eat enough you're not getting enough food AND fiber and you're going to have less insulin coming from the pancreas. This lack of insulin leads to water loss which is necessary for a soft stool. If you lose water you won't have water to mix the food with the stool, it will get hard, and you'll get constipated."

I was seeing if there was any way i could leave a personal document on my hospitals site records, that all doctors could view, like update-history. As i did stay for 7hrs. I had to run due to an anxiety attack.
It was a fortuitous leave though, as i passed a giant bm, cleared myself out, and can start accounting from the point of what i ate yesterday. So i will continue to keep things documented from this thread.
 
Last edited:
Long segment of stricture in the terminal ileum with imaging findings of active inflammation. Upstream small bowel dilatation. There is also involvement of the cecum and the appendix. Inflammatory mass in the right lower quadrant adjacent to the ascending colon with tiny locule of air. Possible fistulous communication between the inflamed terminal ileum and the appendix...

I highlighted this record of mine from a month ago, as it shows "me" from a point where I had similar issues. My current plan is to really get on this relentless inflammation, but it seems to aggrivate/spur activity all around when anything passes a certain area.
I can do it, if I really get ahold of my stress levels. I will need external help if the inflammation becomes overpowering.
 

Scipio

Well-known member
Location
San Diego
Long segment of stricture in the terminal ileum with imaging findings of active inflammation. Upstream small bowel dilatation. There is also involvement of the cecum and the appendix. Inflammatory mass in the right lower quadrant adjacent to the ascending colon with tiny locule of air. Possible fistulous communication between the inflamed terminal ileum and the appendix...

I highlighted this record of mine from a month ago, as it shows "me" from a point where I had similar issues. My current plan is to really get on this relentless inflammation, but it seems to aggrivate/spur activity all around when anything passes a certain area.
I can do it, if I really get ahold of my stress levels. I will need external help if the inflammation becomes overpowering.
That excerpt from the medical report sounds serious enough that the inflammation may already be overpowering. The possibility of fistula is especially concerning. You may well need something stronger than a reduction in stress levels (i.e. strong medication) to get the upper hand with this condition.
 
That excerpt from the medical report sounds serious enough that the inflammation may already be overpowering. The possibility of fistula is especially concerning. You may well need something stronger than a reduction in stress levels (i.e. strong medication) to get the upper hand with this condition.
I agree with you, as it does feel pretty gnarly pain wise nd everything...
Thank you for looking that over, as i needed an outside opinion/human interaction.
I am doing liquids today and thinking over my options. I gave my doctor a letter that says how i feel now that ive passed the BM.
The next thing is to get an MRI. I believe that was next on the agenda.
I was /?able to eat 3 eggs benedicts (no ham) yesterday.... Able as in, suffered through the pain. Damn did they taste great though...
If i can atleast poop/flush those out, atleast i will know i am still going. If not, the blockage and 'bad area' have really taken over.
 
Update after MRI/+ Question, regarding what i can do...

"....There is a complex fistula with tethering of multiple loops of bowel in the right lower quadrant, involvement several loops of distal ileum, sigmoid colon, and likely the appendix. There is associated bowel wall thickening and enhancement of the involved loops compatible with active Crohns. Seen is a 2.7 cm gas-containing inflammatory mass posterior to a loop of distal ileum involved with the fistula."

This does jive with how it feels as food passes it.
My question is, what can i do about this? Im very nervous in facing the possibility of remicade/infusion, as i have severe anxiety being in hospital for even an hour/2 hours... I mean, maybe I could do an hour, but still it builds up over time and i cannot stop myself from getting impatient.
There must be an alternative, right?
 
Last edited:

my little penguin

Moderator
Staff member
So there are injectable biologics
Such as humira,cimiza ,Stelara
Which can be given at home
No hospital required

my kiddo was on humira for over 5 years
And now has been on Stelara for over 5 years
No issues
Can you talk to your therapist about your concerns ??
 
  • Like
Reactions: mo7
So there are injectable biologics
Such as humira,cimiza ,Stelara
Which can be given at home
No hospital required

my kiddo was on humira for over 5 years
And now has been on Stelara for over 5 years
No issues
Can you talk to your therapist about your concerns ??
Yes I've currently been discussing my issues with therapist. We are trying to work out a solution, although I'm unsure how to resolve such things mentally, tho time will tell....
O wow, *Cimzia, *Stelara i never heard of those, i'll have to look into it. That's great, Definitely sounds like somethin... I'm nervous i'll need surgery for this fistula situation, although to be honest, my gastro has yet mention anything of the sort.. My mom has had 3 or 4 surgeries for her Crohns dilemmas, ive only ever had an abscess drained, which was a very simple process. Surgery makes me nervous, altho i suppose im just goin' w/ the flow for now. Thank you.
 
Last edited:
In the US at least
Remicade etc….can be done in your home with infusion from a home health nurse
So no actual hospital visit
O wow i didnt know that... I am likely to consider that, absolutely as i am much more comforted, relaxed, etc at home..
I was approved for avsola which i suppose is the same as remicade in that regard... I will ask my gastro about this, thanks.
 
I'm DEEP into this, when it comes to 24 7 grueling, lethargic, exhausting, pulling on my mind to wrap around either -> "its the acid pains!... its the cramping pains!!"...
... and what to do about.... how to go about eating... how to manage the torment.

And so i waited 5 months to get on a new biologic, Avsola... My 1st infusion (at home mind you) just happened a couple days ago... i felt like it helped. I felt like it was a contribution I need, in the overall process of things i have needed to go on...

I'm monitoring this thing to death. It's all i can do. I'm very weak and vulnerable. But i feel confident. My digestion is very poor. Its like, carrying a large boulder for 10 hours down the shaft, just to shimmy a small portion/morsel down my intestine. Its this dang fistula(what i call the bad area) that tends to hold things up... And its changed position many times -as being acclimated to different positions would heal one area, and inflame another.

Thats my life rn... Im digging DEEP like i said. I sometimes have one good moment in the morning, and Im trying to exploit that. But it is tough let me tell you.
 
Top