u/UnlockedIdiot

For those of you that have had a j pouch or colostomy when did that become a viable option for you? Did it improve your quality of life overall or make it worse?

Recently diagnosed in February initially with UC later changed to indeterminate colitis (AKA we don’t know yet if it’s crohns or UC). Have had 15 years of symptoms, 10+ scopes (upper and lower) with biopsies. Some come back normal, some show terminal ileum involvement, others showed large intestine involvement but with skipping and sparing of some areas, apthus ulcers in terminal ileum etc.

Since February I have gotten progressively worse. My hemoglobin and iron dropped enough that I need iron infusions now. My vitamin D, protein, calcium etc are all low.

We started Mesalamine in march. I had a bad skin reaction to it and had to stop. Started Entyvio in May. After the loading doses, no relief and a repeat calprotectin had nearly doubled. Stopped the entyvio and did a taper of budesonide with a prednisone taper. It offered some short term relief but symptoms came right back. Started Skyrizi two weeks ago. Too early to see anything from that. Currently on my third round of budesonide tapers.

I feel like I have no life anymore. I cannot leave the house or be more than a short walk from a bathroom. I have had several accidents just this week alone and have to sleep in an adult diaper just in case. I’m frustrated and concerned that the ongoing inflammation is doing damage. Every movement now has blood and mucus in it. Urgency is very bad. Pain is worse than before.

Is this normal? Does everyone go through this period of constant blood loss, incontinence and urgency? I also have lupus so that isn’t helping the inflammation much I’m sure.

Just looking for some reassurance that it isn’t just me I suppose. I’m only 37 and I can’t even go to the grocery store. I keep emesis (vomit) bags in the car for emergencies if I can’t reach a restroom and a spare change of clothes. This has changed my entire life.

I also have p-ANCA positivity with DNAse sensitivity, positive HLA B27, positive ASCA IgG AND ASCA IgA.

Recently diagnosed in February initially with UC later changed to indeterminate colitis (AKA we don’t know yet if it’s crohns or UC). Have had 15 years of symptoms, 10+ scopes (upper and lower) with biopsies. Some come back normal, some show terminal ileum involvement, others showed large intestine involvement but with skipping and sparing of some areas, apthus ulcers in terminal ileum etc.

Since February I have gotten progressively worse. My hemoglobin and iron dropped enough that I need iron infusions now. My vitamin D, protein, calcium etc are all low.

We started Mesalamine in march. I had a bad skin reaction to it and had to stop. Started Entyvio in May. After the loading doses, no relief and a repeat calprotectin had nearly doubled. Stopped the entyvio and did a taper of budesonide with a prednisone taper. It offered some short term relief but symptoms came right back. Started Skyrizi two weeks ago. Too early to see anything from that. Currently on my third round of budesonide tapers.

I feel like I have no life anymore. I cannot leave the house or be more than a short walk from a bathroom. I have had several accidents just this week alone and have to sleep in an adult diaper just in case. I’m frustrated and concerned that the ongoing inflammation is doing damage. Every movement now has blood and mucus in it. Urgency is very bad. Pain is worse than before.

Is this normal? Does everyone go through this period of constant blood loss, incontinence and urgency? I also have lupus so that isn’t helping the inflammation much I’m sure.

Just looking for some reassurance that it isn’t just me I suppose. I’m only 37 and I can’t even go to the grocery store. I keep emesis (vomit) bags in the car for emergencies if I can’t reach a restroom and a spare change of clothes. This has changed my entire life.

I also have p-ANCA positivity with DNAse sensitivity, positive HLA B27, positive ASCA IgG AND ASCA IgA.

Recently diagnosed in February initially with UC later changed to indeterminate colitis (AKA we don’t know yet if it’s crohns or UC). Have had 15 years of symptoms, 10+ scopes (upper and lower) with biopsies. Some come back normal, some show terminal ileum involvement, others showed large intestine involvement but with skipping and sparing of some areas, apthus ulcers in terminal ileum etc.

Since February I have gotten progressively worse. My hemoglobin and iron dropped enough that I need iron infusions now. My vitamin D, protein, calcium etc are all low.

We started Mesalamine in march. I had a bad skin reaction to it and had to stop. Started Entyvio in May. After the loading doses, no relief and a repeat calprotectin had nearly doubled. Stopped the entyvio and did a taper of budesonide with a prednisone taper. It offered some short term relief but symptoms came right back. Started Skyrizi two weeks ago. Too early to see anything from that. Currently on my third round of budesonide tapers.

I feel like I have no life anymore. I cannot leave the house or be more than a short walk from a bathroom. I have had several accidents just this week alone and have to sleep in an adult diaper just in case. I’m frustrated and concerned that the ongoing inflammation is doing damage. Every movement now has blood and mucus in it. Urgency is very bad. Pain is worse than before.

Is this normal? Does everyone go through this period of constant blood loss, incontinence and urgency? I also have lupus so that isn’t helping the inflammation much I’m sure.

Just looking for some reassurance that it isn’t just me I suppose. I’m only 37 and I can’t even go to the grocery store. I keep emesis (vomit) bags in the car for emergencies if I can’t reach a restroom and a spare change of clothes. This has changed my entire life.

I also have p-ANCA positivity with DNAse sensitivity, positive HLA B27, positive ASCA IgG AND ASCA IgA.

I first started having severe symptoms in February of this year but I have had ongoing GI issues (pain, mucus, blood, frequency) since 2011. I have seen 5 GI doctors in those 15 years and had 10 colonoscopies and EGDs with biopsies. I have had findings of terminal ileum erosion and ulceration, EoE, left sided colitis, and most recently diagnosed with indeterminate colitis in February of this year. I was started on mesalamine which caused a blistering rash so that was stopped and budesonide was started. I also started entyvio infusions roughly 6 weeks ago (my third loading dose is tomorrow).

My concern is that nothing has alleviated the bleeding, pain, urgency and incontinence. I am 37 years old and have had accidents in numerous places. I cannot leave the house for very long as I am not near a bathroom. I feel like a prisoner in my home tied to the throne. During this time my hemoglobin, MCH and MCHC has consistently dropped.

My GI doctor is impossible to get ahold of, once the budesonide ran out he didn’t want to give a refill stating that it didn’t work so he didn’t see the point medically, but there has to be something that can be done seeing as I’m trending towards anemia if I’m not there already.

Has anyone else been through this ringer? Any advice is greatly appreciated.

I first started having severe symptoms in February of this year but I have had ongoing GI issues (pain, mucus, blood, frequency) since 2011. I have seen 5 GI doctors in those 15 years and had 10 colonoscopies and EGDs with biopsies. I have had findings of terminal ileum erosion and ulceration, EoE, left sided colitis, and most recently diagnosed with indeterminate colitis in February of this year. I was started on mesalamine which caused a blistering rash so that was stopped and budesonide was started. I also started entyvio infusions roughly 6 weeks ago (my third loading dose is tomorrow).

My concern is that nothing has alleviated the bleeding, pain, urgency and incontinence. I am 37 years old and have had accidents in numerous places. I cannot leave the house for very long as I am not near a bathroom. I feel like a prisoner in my home tied to the throne. During this time my hemoglobin, MCH and MCHC has consistently dropped.

My GI doctor is impossible to get ahold of, once the budesonide ran out he didn’t want to give a refill stating that it didn’t work so he didn’t see the point medically, but there has to be something that can be done seeing as I’m trending towards anemia if I’m not there already.

Has anyone else been through this ringer? Any advice is greatly appreciated.

I had my first entyvio infusion on Thursday. Since then I have had muscle pain, bone pain (ankles, back and ribs) and awful headaches. I already have chronic migraines but these feel very different than my normal migraines. The pain is sharp and stabbing and doesn’t respond to my typical medicines I take for a migraine. I have my second loading dose in a week and a half. Has anyone else experienced this? Does it get better over time?

I had my first entyvio infusion on Thursday. Since then I have had muscle pain, bone pain (ankles, back and ribs) and awful headaches. I already have chronic migraines but these feel very different than my normal migraines. The pain is sharp and stabbing and doesn’t respond to my typical medicines I take for a migraine. I have my second loading dose in a week and a half. Has anyone else experienced this? Does it get better over time?