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New here and looking for advice/support

First off, I'd like to say hello. Over the last couple of weeks I've been visiting this forum at least twice a day, reading various posts and replies. I decided to join to hopefully take part in some discussions, as well as offer some of my own advice and support. However, I feel in need of asking for some beforehand.

My story up until now...

I was diagnosed with Crohn's about two months after my 7th birthday. I'll be 29 this year and I've felt like I've done okay with this disease thus far. I say that, because at 16 I met with a GI whose only words to me were to have my entire colon removed. Up until that point in my life, my Crohn's was under control (at least I thought it was). I never realized that my ankles swelling up at different times from when I was 10 until I was about 16 was actually due to a complication of the disease, known as Erythema Nodosum. I had been to countless doctors, none of whom could provide me with any answers. I wasn't experiencing any typical Crohn's symptoms, so I had no other information to give when I went to see someone new other than the fact that one or both of my ankles were swollen, and in terrible pain. Eventually at the age of 16 I started to have diarrhea (upwards of 45-50 times a day, though the higher it got, the more it was just pure blood coming out). I didn't want to leave the house and had to drop out of school. That was when I saw the GI doctor who told me that only by having my entire colon removed could I lead a normal life. At 16 I refused such a prognosis. I went to see a different GI doctor who actually wound up telling me that my ankle swelling was in fact Erythema Nodosum and that it was a sign that my Crohn's was not under control. She referred me to a colleague of her's who specialized in alternate treatment methods vs. surgery. He told me about a variety of medications and the risks associated with them. We eventually settled on attacking the disease with a combination of Imuran and Remicade. I thought I had found a great GI doctor, but after only one infusion of Remicade with no result, he wanted to stop my treatment plan. After having a colonoscopy done by him and having him nearly kill me in the process. He had me sign paperwork to have extra biopsies done to help with Crohn's research, which I declined because I was already scheduled to have 15 done. After I had the anesthesia administered and was nearly asleep, he sent in an assistant who had me sign the paperwork which I just previously said no to. They performed between 30 to 37 biopsies on me, and afterwards I had a fever of 104.5 and was throwing up blood. Needless to say, I never went back to this GI doctor again. I went to my family doctor to see if there was any other GI's he could recommend that were close by. I told him I wanted to continue with the Imuran and Remicade, upon which my family doctor asked why it was being stopped after just one dose. When I told him, he had a look on his face as if to say, "Where did this guy get his medical license?!" He informed me that it could take up to eight infusions before actually seeing any kind of results. With my family doctor writing the prescriptions for the meds, I achieved remission. Sadly, it was short lived. He referred me to a local GI doctor who insisted I have a colonoscopy to confirm remission status. I was wary and asked, "Won't having to drink that stuff that flushes my colon out and sticking a camera up there just aggravate the condition?" He looked at me as if I had just spoken in tongues and assured me everything would be fine. I would've liked to punch him in the face because he made everything so much worse due to that colonoscopy (including damaging my my sphincter, which a GI at Johns Hopkins told me was beyond repair or self-healing and was the reason that unless I was sitting down and/or holding onto something, I would be unable to stop a bowel movement before finding a restroom).

I'm going to fast forward to May of last year. I had bronchitis (which I should point out that I was diagnosed with Asthma when I was five and never outgrew it). I was put on Prednisone and an antibiotic, but for the life of me I can't remember what. I've been off and on with the Prednisone since being diagnosed with Asthma, but it never really seemed to help my Crohn's all that much. I held off on taking it and just took the antibiotic to start and after a few days, my Crohn's was nearly non-existent. Three years earlier I had lost a lot of weight due to it and was down under 195lbs. (and I'm 6' 5"). Now I can say I actually feel slightly overweight at 235lbs.

Then a couple of weeks ago I caught the dreaded stomach flu. It wasn't as bad as I thought it was going to be (thankfully I didn't vomit), but since then my Crohn's hasn't been great. A week after the stomach flu I had terrible pain after eating at a restaurant that I visit quite often. Someone else had the other half of my meal and said it didn't sit well with them, but they didn't experience anything like what I did. I've had trapped air/gas before and know how bad the pain can get. Trying different positions to get comfortable in bed was proving futile. Whenever I would roll over on my left side, the pain would halt, but I felt like I was going to throw up. When I switched to my back or right side, the urge to vomit would pass, but the pain would return. At this point I became very scared that I perhaps had a bowel obstruction or perforation. As stupid as it sounds, I have a huge phobia of hospitals, despite being in them a lot. I didn't want to have to go there only to have them tell me it was just what I originally thought it of being, and having them give me a couple Gas X pills. So instead, I went downstairs and found some that were still good to take and did so. About five hours later my pain started to subside and I was able to sleep. When I awoke however, my right side had rebound tenderness. I wanted to wait a couple of days and see if it cleared up on its own, which thankfully it did.

Which brings me to now. I'm having regular bowel movements (though today was an off day where I had about four, two of which were green, but that's passed). Typically I only have about two. My right side however just feels...odd. There really isn't any pain so to speak (though between my last two ribs hurts if I touch it, but I'm not sure if that's related in any way to the Crohn's). My hip has been hurting and feels like there's pressure on it. Normally when I see my chiropractor and get adjusted everything goes back to normal. I haven't been to see him yet, but I've been reading things on the internet. Which is never good. A few months ago I had myself convinced I had lung cancer. I've read about rare conditions with Crohn's that can cause pain in the hip. I feel pressure of sorts along my right side, but more towards my back. I immediately told myself that I had a blockage or perforation. I read about what an obstruction feels like from some of the members on here and it almost sounded like what I had the night I believe I had trapped air/gas, but never ending until going to a hospital.

I have been to eight different GI doctor's, seven of which made my Crohn's 10 times worse after having them take care of me. The only one who helped me moved. I've been on (but long since discontinued) Azulfidine, Donnatal, Entocort, Imuran, and Remicade. Currently for the Crohn's I take a low dose of Symax and have been trying some natural methods (such as peppermint oil capsules) to help with it. I know I need to see a proper GI doctor and I'm looking for one who can not only help me, but is also someone I trust and won't make me feel worse.

I came here for some advice though as to what this odd pressure like feeling can be. I'm not sure if it's any type of muscle that runs along one's side and perhaps I'm just psyching myself out. I should also note that I have Borderline Personality Disorder. I'm currently on Seroquel for that, but in the process of finding a new therapist. The reason I put that I'm in need of support is slightly different. I have a tendency to self-harm (though the Seroquel has curbed that about 90%). With the Crohn's how it is though and having a million things run through my mind with the what-if's, tonight was a sort of breaking point. I had no one to talk to and it was either come here and join this community, or SI. I chose to come here instead.

So...there you have it. I feel the need to apologize, because I feel like I typed WAY too much, but I also needed to. I thank whoever takes the time to read this and reply.
 
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Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum.

You sure have been through a lot and I am sorry to hear that you have had such poor care from some of your docs :( With regards to the pressure you feel towards your back does it kind of feel like you have mild backache at all? Was it a GI doc who prescribed the Symax? I take it the other meds were stopped because you were doing better or was it because they were ineffective? You may also like to have a look at our doctor review section to see if there is any info on someone in your area.

AB
xx
 
WOW, you have been through alot for sure. Welcome to the forum. I know you will find the support you want here.

See ya around.

Jim (Pops)
 
Thank you both Angrybird and Jim.

To answer your questions Angrybird, my family doctor was the one who prescribed the Symax. Only at my request though. I had read about it and asked two family members who are nurses, as well as my pharmacist for their opinion on the drug. As for the backache, kind of. I feel a tiny twinge every now and again. I'm kind of accustomed to having pain all over (don't think I mentioned it in my original post, but I also have RSD, which is more localized to my knees). Anymore when I read things, I'm not sure if I actually have the pain or if it's my brain mimicking it, because I psych myself out so much.

The most I can say for right now is that towards my hip I feel pressure, and it does feel like it goes around to the back of the hip. Almost as if my belt is too tight (though right now I'm in my PJ pants, which are very loose). There is a pain/soreness in my last two ribs on the right side, but only when I touch it. There is a muscle that I've been told is very tense and hard as a rock in my back that runs just below the ribcage. It doesn't hurt, but it feels weird. Almost like someone made a small incision and inserted a gel pack just below the skin (that has been going on since October). I also have a slight pressure and very, very mild pain on the right side of my stomach, between my ribcage and hip, but more towards my navel.

I can hear my gut making sounds from time to time. Like I said before as well, I'm having regular bowel movements and I do pass gas.
 
They are a mix, but the solid portions are very soft. Some of the time though it is fully formed with zero water.

*EDIT*

I thought it would be a good idea to take my temperature, and it's normal (98.8).
 
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I went twice already today, but could the possibility of there being some constipation somewhere exist? If so, any thoughts on what to do? I've drank prune juice before to help with constipation, it's just hard to get down, but that's because I don't like the taste.
 

Angrybird

Moderator
Location
Hertfordshire
It may be worth going onto a bland, low residue diet and see if this helps. How are you getting on with finding a GI to see so this can be looked into for you?
 
I've actually gotten three different GI doctor recommendations over the last couple of days from various people. I'll be contacting one of them that I looked up for an appointment during the week. :thumright:

The pain and pressure seem to be subsiding slightly more and more as the days go by, but I'm definitely still going to be making an appointment to have a doctor see what's what.
 
Wow thats quite a story ....I'm sorry you've had such bad experiences with GI's and that up to now they havent been able to help you. I hope your appointment next week goes well so that they can start you perhaps on some different meds to help alleviate your symptoms..

Xx

Yanet
 
I have an appointment for this Saturday. Hoping this guy is someone who I can look forward to calling my GI doctor from now on.
 
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