Do I have Crohns?

[FatiguedFemale]

Sorry if my story is long. This is my first time on this site.

I'm a 30 year old female, mother of two.

10 years ago I had raging diarrhea for months. I lost countless pounds and looked like a skeleton. The GI I went to did a colonoscopy and found no abnormalities. He deemed me healthy and disease free. After a while, I did get better, but it was followed with a LONG bout of constipation. Only fleet would give me relief and it was a full day commitment each time as I would have to be on the toilet all day.

I switched GI doctors and the new one did more testing. Through barium X-ray, he found some issues with moving stool and suggested surgery. I panicked. I saw myself as a 20 year old with a colostomy bag and never returned to the doctor. I watched what I ate very carefully and was semi healthy for the next 8 years or so.

Now, I have severe constipation again. Along with many other symptoms. The only thing I can come up with is Crohns from researching.
For the past year and a half I've had Mrsa lesions approximately 20 times. Right now I don't have an active sore but my joints hurt, I get headaches, especially outside in the heat, I am so tired I can barely get out of bed some days. I do have constipation but not as bad as it was 10 years ago. If I take enough magnesium I get coffee ground stool. My stomach is always uncomfortable, in pain and/or bloated.
I've fixing things through a naturopathic doc, but nothing seems to help.
My appt with the gi isn't for another couple of weeks, and I made the appt months ago. I'm very frustrated, but I would like to see the same GI that did the X-ray. Also, stool testing showed high "alpha anti-chymotrypsin" which supposedly means inflammation in small intestines. My corneas are also swollen and I have not been able to wear my contacts for months. I also consistently have a fever of 99.5. I normally run in the 97 range. I don't get chills just sweats, especially at night.
Do you think this is Crohns? I'm miserable. Any advice would be appreciated.

 

[Lady Organic]

its possible. crohns can indeed bring systemic inflammation during a flare so other extra-intestinal physical parts can be inflammed. Joints and eyes manifestations are common. Personnaly If i had any fever along with all the other symptoms you mention and couldnt contact my GI, I'd go to the ER. Im not shy to go to the ER when something is really wrong. but only you know if you can tolerate this a few more weeks. best wishes.

 

[sidney75]

it's definitely possible, but it could also be something else. Maybe an appointment with an internal medicine specialist or family doctor while you wait for gi. At least to get some blood work going in the meantime (maybe some ANA level checks?). I'm dealing with very similar situation, the worst part is feeling so tired and always having a fever when there's no quick fix for it. I stay out of the sun as much as possible because it makes everything one hundred times worse. Goo luck!

 

[FatiguedFemale]

Do I have crohns?

Sorry if my story is long. This is my first time on this site.

I'm a 30 year old female, mother of two.

10 years ago I had raging diarrhea for months. I lost countless pounds and looked like a skeleton. The GI I went to did a colonoscopy and found no abnormalities. He deemed me healthy and disease free. After a while, I did get better, but it was followed with a LONG bout of constipation. Only fleet would give me relief and it was a full day commitment each time as I would have to be on the toilet all day.

I switched GI doctors and the new one did more testing. Through barium X-ray, he found some issues with moving stool and suggested surgery. I panicked. I saw myself as a 20 year old with a colostomy bag and never returned to the doctor. I watched what I ate very carefully and was semi healthy for the next 8 years or so.

Now, I have severe constipation again. Along with many other symptoms. The only thing I can come up with is Crohns from researching.
For the past year and a half I've had Mrsa lesions approximately 20 times. Right now I don't have an active sore but my joints hurt, I get headaches, especially outside in the heat, I am so tired I can barely get out of bed some days. I do have constipation but not as bad as it was 10 years ago. If I take enough magnesium I get coffee ground stool. My stomach is always uncomfortable, in pain and/or bloated.
I've fixing things through a naturopathic doc, but nothing seems to help.
My appt with the gi isn't for another couple of weeks, and I made the appt months ago. I'm very frustrated, but I would like to see the same GI that did the X-ray. Also, stool testing showed high "alpha anti-chymotrypsin" which supposedly means inflammation in small intestines. My corneas are also swollen and I have not been able to wear my contacts for months. I also consistently have a fever of 99.5. I normally run in the 97 range. I don't get chills just sweats, especially at night.
Do you think this is Crohns? I'm miserable. Any advice would be appreciated.

 

[Weeble]

The only advice that I can offer is go see someone. Just because you may need an operation doesn't mean to say you will need to have all of your bowel removed! I have crohn's and there's no talk of operations at this stage, some people have had a little removed and are managing fine. So please - instead of stressing (which only makes things worse) go see someone. Good luck

 

[FatiguedFemale]

I know that now but as a 20 year old I was thinking worst case scenario. I'm actually kind of excited to get started with the GI and hopefully have the operation done. I'm very ready to start feeling better.
I am nervous about the recovery. I have two small children (5 and 2). I'm not quite sure how well I will be able to care for them. Any thoughts on recovery? How long before I would be able to function adequately as a mom?

I'll do the surgery (if he still wants to) in the summer and since I'm a teacher I at least don't have to worry about getting back to work for several weeks.

I'm just praying this is what will make me feel better, not just in my gut but all over.

 

[FatiguedFemale]

Sidney, my naturopath is sending me to lots of labs. Hopefully they are the right ones. She seems to think all of my issues are from SIBO, but I think I have sibo because of motility issues in the small intestine. When bacteria sits too long in the small intestine it leads to bacterial overgrowth.
I hope yours turns out okay. I'd be interested to hear what your diagnoses is! Sounds like we might have the same thing.

 

[FatiguedFemale]

Sidney, my naturopath is sending me to lots of labs. Hopefully they are the right ones. She seems to think all of my issues are from SIBO, but I think I have sibo because of motility issues in the small intestine. When bacteria sits too long in the small intestine it leads to bacterial overgrowth.
I hope yours turns out okay. I'd be interested to hear what your diagnoses is! Sounds like we might have the same thing.

 

[UnXmas]

It doesn't sound like you have typical Crohn's symptoms. What in particular makes you think you could have Crohn's?

What kind of surgery was suggested? Sorry if I've not understood your post correctly, but do you mean you now want the surgery that was suggested years ago? Or has surgery now been brought up again? It seems unusual for a doctor to suggest surgery without a clear diagnosis. Recovery time obviously depends on the type of surgery. If it does come to that, I got a permanent stoma in my twenties and don't regret the surgery at all.

If you do have motility problems in the small intestine, I can't see how they're going to be resolved with surgery. Sorry, I'm just a bit confused by your post! Or am I just missing something?!

Something is clearly wrong and you need treatment, but you need a much clearer idea of what is wrong to be able to know the treatment you will need.

 

[sidney75]

Hi Fatigued,
I have gastroparesis, and I'm sure I have intestinal motility issues as well. I have very little intestinal flora and have constant constipation problems so SIBO could very well be something I'm dealing with. I also have water contamination issues at my house (chemicals) so it's hard for Doctor's to figure out what is causing what. Have CT enterography tomorrow so I'm hoping to find out more about what kind of damage i have in my intestines and see if I can get a formal diagnosis. I'll let you know how that goes.

 

[scot865]

hey, go and see a gi, make sure you get the big 4. Scoped, small bowel series/follow through, CT scan, and a MRI, cover your bases. As someone that ran away from doctors like you for many years, all i did was complicate the ability to be diagnosed and even admitted to the hospital. My body has grown a natural ability to hide infections in ym blood work. SSo much so that the reason i stopped running from doctors, was my kidney stopped working due to going septic from 7 abscesses, and an amount of fistula that was classified as, "we couldnt tell what was what anymore. In the scans/ barium small bowel series, my whole inside was almost universally white. The big boys at harvard saved my life. I ran because like you i was to get the bag for life. Now i never get fevers, blood work almost always remains low to perfect, even when i am passing out nothing shows up. I created a monster that is very hard for doctors to swallow. And none of them are quite sure how to deal with it or accept that someone could for almost 10 years avoid doctors with "hundreds" of fistula and 7 full blown abscesses 2 strictures and a blockage. Thank god you had all those fistula is what they said. You dont hear that often. Moral to story dont run from the docs. Seriously. Seriously. Seriously. While i might be living proof your body will adapt to constant infection, i also no longer respond to any antibiotics. Not good. It was just very hard for me to accept as i lost so much intestine from 5 to 23, i had hopes for cloning and so did my docs back then. Suggesting to a 23 year old to get a permanent central line and removing your rectum is kinda a no turn back. Im not saying what happend to me wioll happen to you. I'm saying please stay with your docs.

 

[FatiguedFemale]

Thanks Scot. My blood work came back normal, but doc can feel issues in my abdomen. Went to a GI in my town and colonoscopies are scheduling over two months out! My general doctor gave me a referral to a larger city with less wait time. I'm a teacher and would like to do as much as possible before school starts again. Frustrating. I'm questioning my sanity.

 

[sidney75]

Hi Fatigued,
Hang in there. I completely empathize with the way you are feeling. As far as waiting months for a colonoscopy, if it is possible for you to go to another place sooner you should if you can find one in your insurance network. I also live in a small area and the general surgeon ended up doing mine because the GI department could not get me in. My CT Enterography came back normal this week which made me both happy and disappointed at the same time. The constipation and pain is still pretty bad, and the fevers still come every day. Not to mention, there is still no explanation as to why I had bowel obstructions, tons of inflammation in my colon and have Gastroparesis. I know I have colon motility issues as well. So now I wait to go Rheumatology. In this area every visit to rheumatology is a two month wait or more. I asked my GI about sibo and she said no because I do not have diarrhea. I asked her about my Pancreas and Gall Bladder, and she was not interested. She says my fevers are not GI related. The way I figure, I'll just trudge on the best I can until I end up back in the hospital when my wbc count shoots up again - that's what has happened the last two times. I have little hope that the rheumatologist will shed any light on whatever is going on - it depends on if my ANA levels go up again or not. In the meantime, I stay out of the sun, eat soft food, and take Advil because it's the only thing that works on my fevers. I'm considering a trip to Mayo after my wedding in September if I am still not getting anywhere. You're not insane, it's just a cumbersome, complex time and you are not alone!

 

[FatiguedFemale]

Sidney, thanks for sharing your history. It sounds very similar to mine. I tried to convince myself that all of this is in my head and proceeded to have a "normal" weekend. Bad idea. I'm extra tired now and have to make it through the week without my typical weekend recharge. Since this started I've been sleeping the majority of weekends, go to bed early, sleep in and take naps when my kids do. I generally feel better until Wednesday if I get enough sleep. The fevers are frustrating and getting worse as the weather heats up; we're supposed to hit 115 next week. Yikes!!!

 

[FatiguedFemale]

I went to see my naturiopath again and she said I just need more sleep. I told her all I do is sleep! My GP referred me to the GI in a larger city but even that has been a long process and am still waiting on an appointment.
I'm frustrated that I'm not the best I can be for my family or my students right now.
On top of it, I feel like I'm putting all of my eggs in the GI basket. If this ends up not being the reason for my illness I don't know what to do next.

 

[sidney75]

Hi Fatigued,
Sorry you are having such a hard time. Are you taking probiotics at all? I assume that is something your naturopath would have suggested. It's one thing I find that helps my energy level. I still get fevers daily but my overall energy level is higher and I have more mental clarity. My GP referred me to an internal medicine specialist who ran all of the bloodwork that showed some elevated ANA levels and some other autoimmune markers, which while I still do not have answers for but has opened up the scope of what they are looking at a bit. Of course, that appointment took a few months to get as well. You might want to ask for a referral to an internal medicine specialist to get that scheduled in case it's not strictly a GI problem. I'm surprised it's taking so long to get a colonoscopy as in my area that's basically all the GI department does is bulk colonoscopies several times a week. Keep advocating for yourself. It feels uncomfortable, and some Doctor's may make you feel like you are a pain, but it doesn't matter. You know your body and you know when something is wrong. Unfortunately the process to diagnosis for something like this is so long and you can feel helpless at times. Are you trying anything different with your diet? Have you been tested for mono, lyme disease? Just a few suggestions. Hopefully you have air conditioning. Sending you my best.

 

[sidney75]

Oh and a few other thoughts. If you have intestinal motility issues you likely are not getting nutrients your body needs. Even if you vitamin testing came back ok so are you supplementing your nutrition? I drink a boost every day. I also take a magnesium supplement to help with the constipation. And do you have access or copies of your blood work results? You can and should get them so you can take a look and do your own research, and know exactly what you have an have not been tested for so you can provide suggestions to your doctor and be informed. Especially as you branch out to different doctors.