- Joined
- Jun 25, 2015
- Messages
- 1
Hi. I'm very perplexed and would like a general idea of what it feels like to have Crohn's. Ten years ago I was diagnosed with lupus SLE. I had been sick for quite some time and had already come to the conclusion that that's what I had so when the doctor finally had the blood work to prove it I was relieved. Since then, I have come to understand my disease; how to manage it and anticipate its demonic ways, how to work with it and not fight and most importantly, how to live comfortably in my own body at peace with careful, patient knowledge I have attained in the compatibility of my body to cooperate. Then, there's this ...
About four years ago I started experiencing tremendous amounts of mucus and uncontrollable urges which had me running to bathrooms all over the world. The bathroom issue was becoming an issue but not so much so that it interfered with every moment of my life. I attributed it to stress, age, lactose intolerance, bad stomach, Gastro issues etc. There were periods where I was quite nervous then long stretches where it was only an occasional pain in the ass (ha ha). About a year ago we switched into: constant problem & daily attention needed. I was extremely bloated, always felt like I was going to burst and I began, what I call, "leaking." Not to be gross, but this means literal leaking of mucus with small amounts of blood and feces. For the most part it was controllable and I developed a habit of literally plugging things up so that I would have advanced warning. (.....)
Obviously got to the doctor and told me I had proctitis after a colonoscopy. Actually, he told me I had Crohn's at first, then he mentioned the proctitis and that it was very minor and only setting a very small portion of my anus. Oddly enough, the computerized printout generated when he does the colonoscopies also said something about Crohn's, but he later leaning on the diagnosis of Crohn's made quite clear he only diagnosed me with proctitis and that it was a small and relatively minor issue. He gave me suppositories and said I'd be fine. Well suppository did nothing at all except and another substance to the leaking. Went back told him this so I wanted to try Lialda as had no effect with the suppositories. I suspect he thinks I was lying or not using medication as directed. Took the Lialda - same non-results.
Things got worse. My lupus doctor, who had me on CellCept three times a day made a decision for me to stop taking CellCept for a time as it seemed it was no longer effective. For sometime I had been experiencing increasingly debilitating body aches and pains and active disease issues. (Turns out it was my fibromyalgia that was the main cause of all that but who knew at the time?) When I stopped taking the CellCept I had an immediate response it - devastating. Soon thereafter I thought I was getting a stomach virus, queasy even threw up once and then feel better.
The following week repeat of the same thing. I coincidently had a G.I. appointment, told the doctor what was going on I mentioned I had been throwing up more often now, but felt quite fine in between throw up sessions. Is that the only time I didn't throw up is when I had to use the bathroom. It seems (...) that I had the flu that I'd be better in a week.
A week later I was severely dehydrated, in agonizing pain every time I had to use the bathroom, was unable to use the bathroom or pass any stool with the exception of something that looks much like spaetzl and the frequency with which I was throwing up and pooping at the same time was constant. I also felt a sharp pain in my lower abdomen on the left side which coincided in agony with the moments I have to go to the bathroom. I literally felt as if there was a blockage.
Next day sigmoid (Half assed colonoscopy?) and he determined Crohn's due to "sparing" which conveniently allowed for the previous diagnosis of only proctitis. Okay, but here's the kicker ... I am now being told that I never had lupus, that this Crohn's is quite similar and that my Lupus medications – one of which was Imuran early on – has kept his condition at bay and semi manageable all these years and stopping CellCept kicked things in to high gear. In time I can accept this, probably. But what I'm having a great difficulty with is having to make a decision on taking Humira posthaste.
What do you all think - those who have this disease? I mean, logically I understand that Crohn's is much easier to pinpoint and diagnose as there are actual medical doctory type tests, data etc.nto back up such findings unlike lupus which is the all powerful, greatly elusive Master of Destruction. I'm told by several people some of them even doctors these two diseases do not exist together. That said there are plenty people all over the world who have both according to chat rooms and with people support groups such as this one.
Please pardon my language but I have one question to ask: WTF?
Any and all commentary is appreciated. I am at the beginning of yet another journey in my life and I need information. My gut (another pun, sorry, I am an English teacher) tells me I have both diseases, the Crohn's is real, it has been for some time, it needs to be addressed, but it's complicated. A lot of conflicting information particularly with Lupus and some of the methods used for (...)? cause lupus syndrome. You know, because things couldn't get any more complicated right?
So... What do you think? How do you feel about Humira? I'm a chickenshit with shots and I seriously doubt my ability to maintain medication protocol especially at this moment in time when I really feel like the medication is worse than the bite. Thoughts? Feelings? Comments?
In gratitude - etc90
About four years ago I started experiencing tremendous amounts of mucus and uncontrollable urges which had me running to bathrooms all over the world. The bathroom issue was becoming an issue but not so much so that it interfered with every moment of my life. I attributed it to stress, age, lactose intolerance, bad stomach, Gastro issues etc. There were periods where I was quite nervous then long stretches where it was only an occasional pain in the ass (ha ha). About a year ago we switched into: constant problem & daily attention needed. I was extremely bloated, always felt like I was going to burst and I began, what I call, "leaking." Not to be gross, but this means literal leaking of mucus with small amounts of blood and feces. For the most part it was controllable and I developed a habit of literally plugging things up so that I would have advanced warning. (.....)
Obviously got to the doctor and told me I had proctitis after a colonoscopy. Actually, he told me I had Crohn's at first, then he mentioned the proctitis and that it was very minor and only setting a very small portion of my anus. Oddly enough, the computerized printout generated when he does the colonoscopies also said something about Crohn's, but he later leaning on the diagnosis of Crohn's made quite clear he only diagnosed me with proctitis and that it was a small and relatively minor issue. He gave me suppositories and said I'd be fine. Well suppository did nothing at all except and another substance to the leaking. Went back told him this so I wanted to try Lialda as had no effect with the suppositories. I suspect he thinks I was lying or not using medication as directed. Took the Lialda - same non-results.
Things got worse. My lupus doctor, who had me on CellCept three times a day made a decision for me to stop taking CellCept for a time as it seemed it was no longer effective. For sometime I had been experiencing increasingly debilitating body aches and pains and active disease issues. (Turns out it was my fibromyalgia that was the main cause of all that but who knew at the time?) When I stopped taking the CellCept I had an immediate response it - devastating. Soon thereafter I thought I was getting a stomach virus, queasy even threw up once and then feel better.
The following week repeat of the same thing. I coincidently had a G.I. appointment, told the doctor what was going on I mentioned I had been throwing up more often now, but felt quite fine in between throw up sessions. Is that the only time I didn't throw up is when I had to use the bathroom. It seems (...) that I had the flu that I'd be better in a week.
A week later I was severely dehydrated, in agonizing pain every time I had to use the bathroom, was unable to use the bathroom or pass any stool with the exception of something that looks much like spaetzl and the frequency with which I was throwing up and pooping at the same time was constant. I also felt a sharp pain in my lower abdomen on the left side which coincided in agony with the moments I have to go to the bathroom. I literally felt as if there was a blockage.
Next day sigmoid (Half assed colonoscopy?) and he determined Crohn's due to "sparing" which conveniently allowed for the previous diagnosis of only proctitis. Okay, but here's the kicker ... I am now being told that I never had lupus, that this Crohn's is quite similar and that my Lupus medications – one of which was Imuran early on – has kept his condition at bay and semi manageable all these years and stopping CellCept kicked things in to high gear. In time I can accept this, probably. But what I'm having a great difficulty with is having to make a decision on taking Humira posthaste.
What do you all think - those who have this disease? I mean, logically I understand that Crohn's is much easier to pinpoint and diagnose as there are actual medical doctory type tests, data etc.nto back up such findings unlike lupus which is the all powerful, greatly elusive Master of Destruction. I'm told by several people some of them even doctors these two diseases do not exist together. That said there are plenty people all over the world who have both according to chat rooms and with people support groups such as this one.
Please pardon my language but I have one question to ask: WTF?
Any and all commentary is appreciated. I am at the beginning of yet another journey in my life and I need information. My gut (another pun, sorry, I am an English teacher) tells me I have both diseases, the Crohn's is real, it has been for some time, it needs to be addressed, but it's complicated. A lot of conflicting information particularly with Lupus and some of the methods used for (...)? cause lupus syndrome. You know, because things couldn't get any more complicated right?
So... What do you think? How do you feel about Humira? I'm a chickenshit with shots and I seriously doubt my ability to maintain medication protocol especially at this moment in time when I really feel like the medication is worse than the bite. Thoughts? Feelings? Comments?
In gratitude - etc90
Last edited by a moderator:
