Okies, I need some guidance/ideas of whats going on here . . . .
I'm totally sick of how I feel at the moment, yet nobody seems to want to do anything with any urgency . . .
I've had a diagnosis for 10 years, it started as indeterminate colitis, then UC, I've had diagnoses of Crohns, Crohns Colitis and Proctitis, we know theres IBD. I've been in flare now for 14 months, give or take the odd 'good' day. I've had 3 hospital spells, 3 lots of IV steroid, coutless oral steroids and finally started Aza 9 weeks ago. Frankly, I am no better, I would actually argue I'm worse now than 9 weeks ago.
This is where it gets graphic . . . .
First thing every morning I produce 'jellyfish', the snotty bleeding balls that fall out. Some days I'm lucky and only have 2-3 before I go to work, others not so. I ALWAYS wake in the morning with urgency. More recently I've been waking in the night for them too.
I'm going to the bathroom 15-20 times a day, I don't do diarrhoea tho, I do small rabbit poo sized soft lumps, usually floaters. They are always coated in red, if I'm unlucky there are black clots in there too. Theres also one hell of a lot of snot comes out.
The last few days I've had brown snot, like the colour of dried blood. This is new.
I have pain, the dull IBD type, but also stabbing pain both upper right and upper left. I've been getting a strange 'pulling' feeling when I walk too, kinda in my groin area, it feels like I can't stretch. I also get massive but momentary pain when I sit down.
I'm having trouble passing things. I was taught many many years ago how to 'feel' for internal hemmies, and have done so fairly regularly since (don't want to go to my GI and to the extent of having prep to find a hemmie) . . . sometimes when I can't pass I find if I insert a finger it all comes out, like it couldn't find its own way . . . I get really gassy and sometimes it's the only way to release it without toxic warfare in public bathrooms! But I have noticed, my rectum feels odd. It used to be fairly spacious, now theres a narrow channel straight upwards, a big lump where space used to be and then the normal exit to my colon. This has worried me quite a lot . . . .
Also, I'm a girl, had an implant in 3 months ago and have been bleeding ever since-varying quantities.
I saw my GI 3 weeks ago, this was before I found the lump, and I asked for a scope-I've never been scoped PRIOR to meds . . . they give me pred then scope when I'm better and find nothing, surprisingly
So I figured a scope when ill would be good. He said no and gave me budesonide. I saw my GP a few days later and explained, he agrees, I should scrap the budesonide and he asked the GI for a scope. Today I recieve full body prep, which means I'm getting a colonoscopy. This is good news. But truly, I'm terrified. If they find bad inflam, I know I'll be put on inflix. This I can take. If they don't, the GI said we're going down the intestinal endometriosis route. But what about this lump?? I don't know that it's abnormal, I do know that it's different to normal for me
I'm struggling to get through days at work AGAIN, I'm so tired, but I guess my body is fighting and I'm not sleeping great. I'm really NOT loving my job at the moment and long to get out, but with my body as it is, it's so dangerous to walk away from an employer that pays me sick . . . I'm just being totally held back by this. Add to that the number of accidents I've had, where I just don't make it. Today I changed clinics for work and had to go via home for new pants. Went on a first date and pooped before I got there . . .
Sorry about the length of that . . . any advice?? Anything I can do? Please don't say 'see your GI' I am, 29th for a scope. Anything before then?
Thanks muchly! xxx
I'm totally sick of how I feel at the moment, yet nobody seems to want to do anything with any urgency . . .
I've had a diagnosis for 10 years, it started as indeterminate colitis, then UC, I've had diagnoses of Crohns, Crohns Colitis and Proctitis, we know theres IBD. I've been in flare now for 14 months, give or take the odd 'good' day. I've had 3 hospital spells, 3 lots of IV steroid, coutless oral steroids and finally started Aza 9 weeks ago. Frankly, I am no better, I would actually argue I'm worse now than 9 weeks ago.
This is where it gets graphic . . . .
First thing every morning I produce 'jellyfish', the snotty bleeding balls that fall out. Some days I'm lucky and only have 2-3 before I go to work, others not so. I ALWAYS wake in the morning with urgency. More recently I've been waking in the night for them too.
I'm going to the bathroom 15-20 times a day, I don't do diarrhoea tho, I do small rabbit poo sized soft lumps, usually floaters. They are always coated in red, if I'm unlucky there are black clots in there too. Theres also one hell of a lot of snot comes out.
The last few days I've had brown snot, like the colour of dried blood. This is new.
I have pain, the dull IBD type, but also stabbing pain both upper right and upper left. I've been getting a strange 'pulling' feeling when I walk too, kinda in my groin area, it feels like I can't stretch. I also get massive but momentary pain when I sit down.
I'm having trouble passing things. I was taught many many years ago how to 'feel' for internal hemmies, and have done so fairly regularly since (don't want to go to my GI and to the extent of having prep to find a hemmie) . . . sometimes when I can't pass I find if I insert a finger it all comes out, like it couldn't find its own way . . . I get really gassy and sometimes it's the only way to release it without toxic warfare in public bathrooms! But I have noticed, my rectum feels odd. It used to be fairly spacious, now theres a narrow channel straight upwards, a big lump where space used to be and then the normal exit to my colon. This has worried me quite a lot . . . .
Also, I'm a girl, had an implant in 3 months ago and have been bleeding ever since-varying quantities.
I saw my GI 3 weeks ago, this was before I found the lump, and I asked for a scope-I've never been scoped PRIOR to meds . . . they give me pred then scope when I'm better and find nothing, surprisingly
So I figured a scope when ill would be good. He said no and gave me budesonide. I saw my GP a few days later and explained, he agrees, I should scrap the budesonide and he asked the GI for a scope. Today I recieve full body prep, which means I'm getting a colonoscopy. This is good news. But truly, I'm terrified. If they find bad inflam, I know I'll be put on inflix. This I can take. If they don't, the GI said we're going down the intestinal endometriosis route. But what about this lump?? I don't know that it's abnormal, I do know that it's different to normal for me I'm struggling to get through days at work AGAIN, I'm so tired, but I guess my body is fighting and I'm not sleeping great. I'm really NOT loving my job at the moment and long to get out, but with my body as it is, it's so dangerous to walk away from an employer that pays me sick . . . I'm just being totally held back by this. Add to that the number of accidents I've had, where I just don't make it. Today I changed clinics for work and had to go via home for new pants. Went on a first date and pooped before I got there . . .
Sorry about the length of that . . . any advice?? Anything I can do? Please don't say 'see your GI' I am, 29th for a scope. Anything before then?
Thanks muchly! xxx
